Pallium India » Newsletter

April 2012

palliumindia — Mon, 30 Apr 2012 12:35:03 +0000

Dear Friends,

Here is an update on morphine sales from the Government Opium and Alkaloid Works, the only manufacturer of morphine powder in the country. All of it is used in the country (India exports raw opium) and so this should reflect the consumption trend of morphine in the country.

The peaks in 2000 and 2001 was because of the huge quantity bought by the Government for free distribution to the regional cancer centers (RCCs). We know that most of it was never used. The 2007 peak was a compensatory rise caused by interruptions in supply in the previous two years, and thus was artificial.

Despite these confounding factors, the fact remains that in the past four years, the consumption of morphine in the country has been stable, not rising. This is indeed worrying!

Smiles Like This Give Meaning to Our Lives

From The Hindu April 20,2012 - Comfort zone for children with debilitating diseases:

Three-year-old Diya laughed delightfully as Sithara, her physician, tickled her.

‘Again,’ she demanded, holding out her hands. As peals of her laughter rang out, the happiness and relief on her mother’s face was palpable.

Two months ago, little Diya could not sit up or even lift her hands because myopathy had weakened her skeletal muscles. Today, she sits up on her mother’s lap to play with toys, thanks to the efforts at pain management and continued physiotherapy.

Read the rest of the report by C Maya in The Hindu

It is only a few months since the palliative care service started at S.A.T Hospital in Government Medical College, Trivandrum, but already it is becoming an important part of our lives in Pallium India.

We thank Dr Elizabeth (Superintendent), Dr Lalitha Kailas (Head of Pediatrics), Dr Mohammed Kunju (Head of Pediatric Neurology), Dr Kalpana, Dr Hariprasad and everyone else at S.A.T Hospital for giving us the privilege of working with them.

The Kids Gave Us More Than They Got From Us

The Kids Collective (Kuttikkoottam) is formed of more than 150 children whose education Pallium India supports.

They are all children from families where the breadwinner died or is paralyzed; they did not have a lot of brightness in their lives.

Some of our volunteers – Brigadier Oommen, Rema Ramparasad, Leela Devi, Mr Sen and others – felt that they need more than books and school fees and thus was born the Kids’ Collective.

During three days of the summer vacation, 37 of the kids got together for a summer camp where they could learn and play and have a bit of fun. Two days in JMM Center and one day of outing to the zoo and planetarium.

And what amazing talents they displayed! Painters, writers, public speakers – the group had them all. They certainly gave us a treat.

We thank Dr Richa Sood and Dr Amit Sood from the Mayo clinic whose contribution was enough for the conduct of the summer camp. There were many other donations – all that is going to a fund for the continued support from the children. As we write this, a career guidance program for selected children is under way!

Thank you very much donors and thank you JMM Study Center for providing the facilities.

Another Step Forward: MD (Palliative Medicine) at Mumbai

Dr. Mary Ann Muckaden, founder of the Department of Palliative Medicine at Tata Memorial Cancer Centre, Mumbai, writes to inform us about their new MD (Palliative Medicine) course:

I am very pleased to inform you that the Tata Memorial Centre has been given the conditional permission to start the first course from the academic session 2012-2013.

Culmination of a lot of hard work by all of us , both here at Tata’s and by the experts who were part of the committee.

I must here acknowledge the efforts of Dr Kailash Sharma, Director, Academics, TMC who has also worked very hard on this.

Hope there are more centres to follow; after 10 years of hard work we should have at least 10 centres in 3 years

Congratulations Dr Mary Ann and team!

“Compassion in Action” Brings Together Many in Palliative Care

A few simple words–or even just a silent, supportive presence – can do so much to bring peace to the seriously ill and dying.

This was the essential message of the “Compassion in Action” Conference, held at Santa Clara University in Santa Clara, California, USA on March 30, 2012. The theme of the one-day event was “Providing ‘The Best Care Possible’ Through the End of Life.”

Organized by Hospice of the Valley and Santa Clara University Department of Counseling Psychology, it featured top tier speakers and drew a sold out crowd of professionals and volunteers from the palliative care and hospice fields.

Pallium India-USA, which was a sponsor of the event, provided information to participants about culturally sensitive hospice volunteering, advance care planning, and the situation in India.

Kersi Daruwalla, a longtime hospice volunteer who has recently joined Pallium India-USA, was a stalwart at the table, as were volunteers Zarina Kaji and Sunshine Mugrabi. Kersi had this to say:

This is a type of conference I recommend all of us can attend from time to time. It revitalizes every cell in your body, and helps you understand how simple life and relationships can be. Yet, it is up to us to make this happen.

I can sum this experience up in the following words: It feels good to be a human, caring for another human.

Always Good

“Nothing that I did in medical school prepared me for what I do now, at least in terms of Palliative Medicine.”

So writes Donal Kevin Gordon MD in “What I Do and Why I Do It: A Palliative Perspective”, published in the Journal of Palliative Medicine blog.

He describes his work in ways that are both heartening and heart rending – highlighting the emotional challenges and sometimes intense family dynamics he encounters. At the end of the day, he often needs an hour sitting in silence in his living room.

His own personal story is striking as well.

He became a doctor late in life, not entering medical school until the age of 49. Prior to that, he was a professional writer, penning books for major publishers.

Why did he become a doctor? And why palliative medicine?

“Life, in fact, was my only preparation for both,

My mother, dead at 49 of breast cancer; my father, dead at 66, himself of pancreatic cancer; me, my bride, then of only months, then suddenly helping me to raise my 11-year-old brother.

And don’t ask me to tell you about my father’s brothers, lost in their 20s, accidents both;

his mother, dead of cancer in her 40s;

her own mother, killed even younger;

yes, by cancer.”

We come to this work for many different reasons, and even–such as in this case–at different points in our lives.

But as he puts it, the doing of the work is:

“… always good… Always rewarding.

And always, considering with whom I work, in good, very good, company.”

National Healthcare Decisions Day Marked

Pallium India-USA plans to join thousands of Americans across the country for National Healthcare Decisions Day on April 16 2012, which brings to the forefront the need to make one’s future healthcare decisions known to family, friends and healthcare providers.

The group will give a formal presentation about how to develop an Advance Healthcare Directive on April 22 at the India Community Center in Milpitas, CA – Learn more and register here.

Advance Healthcare Directives are instructions for your medical decisions if you are not able to speak for yourself. The program is meant to inspire, educate, and empower the community to take charge of its medical care at a crucial time in one’s life.

The San Jose Mercury News coverage of the issue is well worth a read, part of a larger series on the “Cost of Dying,” from reporter Lisa M. Krieger. This piece gets to the heart of why an Advance Healthcare Directive is such an important document:

Cost of Dying: planning for a good death, from advance directive to talking with your family

Bill Newman has seen his share of hospitals. That’s why he plans to never go back.‘If I fall over, just let me go. No 911 guys with paddles. No bells and whistles,’ said the 87-year-old retired high school teacher and double bypass survivor.

[…] Modern medicine prolongs our lives in ways once thought unimaginable. But increasingly, we dwindle into frailty, disease and dementia, ill-prepared for the day when treatment fails us. We can do better, if we make a conscious choice.”

Read the full article at SJ Mercury News…

Pallium India-USA’s mission includes educating the community about the crucial need to put one’s wishes on paper so as to ensure the best quality end of life care.

WHO Includes Palliative Care as Indicator of Control of Non-Communicable Diseases

The World Health Organization is evolving global strategy for control of non-communicable diseases. Several international organizations have been working together to include access to palliative care as an important component of the program.

I am glad to report that Pallium India has had its share in persuading the Government of India to support the move, particularly with advocacy by the Pallium India trustee Dr Shalini Vallabhan.

Within the WHO’s recently published consultation document, “A Comprehensive Global Monitoring Framework Including Indicators and a Set of Voluntary Global Targets for The Prevention and Control of Noncommunicabale Diseases,” the following statement appears on page 10 (PDF):

Table 2: Core indicators for NCD surveillance

National Health Systems Response

Access to palliative care assessed by morphine-equivalent consumption of strong opioid analgesics (excluding methadone) per death from cancer

We all know that this statement is not perfect.

For one thing, morphine consumption is an imperfect indicator of access to palliative care; but we also realize that there is no totally satisfactory indicator.
We are particularly unhappy that the access to palliative care has been needlessly linked to cancer. We worry that with this sentence, the WHO may be unintentionally conveying to member countries that palliative care is meant only for cancer.

However, we also realize that it has been a huge achievement to have gone thus far and any change in that wording at this stage will be almost impossible.

WHO asks all member countries to respond to this with their comments by April 19. There will be a certain maximum number of indicators and it will need several countries’ support to ensure that the current recommendation will stay in the final form of the document.

This is the time when we must use all our contacts with the Department of Health to persuade them to strongly argue to keep the recommendation in.

Weighing the Evidence on Morphine

Scientific evidence can be misleading if it’s not put into the proper perspective.

A recent classic example: The fear generated when some animal studies showed that morphine may have adverse effects in people with cancer.

Board members from the International Association for Hospice and Palliative Care (IAHPC) weighed the evidence and gave it some context – please read:

Do opioids influence cancer growth? The IAHPC perspective

In it, the authors Lukas Radbruch, MR Rajagopal (Pallium India chairman), Liliana De Lima, Eduardo Bruera, David Currow, Roberto Wenk, Jim Cleary, Carla Ripamonti and Michael I Bennett, members of the research and scientific committee of the IAHPC point out that recent studies linking opioids to cancer could be misunderstood:

“Two new studies and a commentary published in the April edition of the journal Anesthesiology report a link between opioid drugs used to relieve pain in postoperative and chronic cancer patients and cancer growth and spread.

A press release from the University of Chicago argues that this adds to the growing body of evidence that opioids can stimulate the growth and spread of cancer cells.”

The article concludes:

“The controversy on the published research data indicates that the effect of opioids on cancer growth and spread is rather small – a borderline effect.

The available evidence might also be used as a plea to use opioids regularly, not only for short periods of time, and in effective (high) dosages.

Even if future studies demonstrate that opioids promote cancer growth and spread, this negative effect is far outweighed by the positive effects of adequate relief of suffering.

Unalleviated pain, with its stress response and its adverse effects on energy, appetite and on general well-being would be a far more significant problem, and might also lead to significant comorbidity and shorter survival.”

Please leave your comments on the blog…

Summit on Breast Health Includes Palliative Care

We are glad to note that palliative and end-of-life care got its place in the Global Summit on Breast Health.

Ms Julia Chase, writing on behalf of Breast Health Global Initiative (BHGI), informs us about the event in October:

Global Summit on International Breast Health
October 3-5, 2012, Vienna

The GLOBAL SUMMIT on INTERNATIONAL BREAST HEALTH: Guidelines for International Breast Health and Cancer Control – Supportive Care and Quality of Life, will be convened by the Breast Health Global Initiative (BHGI), in co-operation with the International Atomic Energy Agency (IAEA), Programme of Action for Cancer Therapy (PACT) of the United Nations, October 3-5, 2012, VIENNA, AUSTRIA.

The Summit will provide a unique open-registration event in the international health community to enhance knowledge of breast health care delivery in low- and middle-income countries (LMCs) from the perspective of Early Disease, Late Disease and End-of-life & Palliative Care.

Scientifically peer-reviewed Guidelines for International Breast Health and Cancer Control – Supportive Care and Quality of Life will result from the 2012 summit, as important and rare medical tools, that will also serve to highlight neglected QOL and palliation issues through mixed-method implementation science research.

The Breast Health Global Initiative (BHGI) is co-sponsored by Fred Hutchinson Cancer Research Center and Susan G. Komen for the Cure®.

For updated information and meeting registration for the Global Summit on International Breast Health, go to www.bhgi.info, or email jchase@fhcrc.org. For sponsorship inquiries, organizations should contact Leslie Sullivan, BHGI Managing Director, lsulliva@fhcrc.org, 206-667-2545.

Call for Applications: IASP Trainee Fellowships

Pain researchers take note!

The International Association for the Study of Pain (IASP) is taking applications for two trainee fellowships, with grants of US$50,000-$100,000 for up to two consecutive years.

Application Deadline: May 15, 2012

Information about the two grants, as provided by the IASP:

2012 IASP John J. Bonica Trainee Fellowship

Award: This fellowship offers a stipend of up to US$50,000 per year for 2 consecutive years (up to a total of US$100,000).

Purpose: Established in 1998 in memory of IASP’s founder, the John J. Bonica Trainee Fellowship supports training in various aspects of pain research to a trainee who is in an early stage of his or her career.

Eligibility: To be considered for this fellowship, mentors and trainees must have been members of IASP for at least one year before applying.

APPLY HERE…

2012 IASP International Trainee Fellowship funded by the Scan|Design Foundation BY INGER & JENS BRUUN

Award: This fellowship offers a stipend of up to US$50,000 for one year of training.

Purpose: Established in 2006, this fellowship supports training in pain research.

Eligibility: To be considered for this fellowship, mentors and trainees must have been members of IASP for at least one year before applying.

APPLY HERE…

April 2012 Issue of Sahayatra Malayalam Newsletter

We are happy to announce that the April 2012 issue of SAHAYATRA, our monthly Malayalam newsletter, is now available for download here…

Awarding-winning LIFE Before Death Series continues…

The “LIFE Before Death” series of short movies continue to be released, one every week. They are not only very informative to the public; but also make powerful advocacy material for the palliative care community.

Here are the 5 films released this month:

Thank you, Mike Hill and team of Moonshine Movies and thank you, Lien foundation,International Association for the Study of Pain, The Mayday Fund, the Union for International Cancer Control and The Institute for Palliative Medicine at San Diego Hospice International Programs. For more information and to view the entire series, visit the Life Before Death website…

PARTING SHOT

“Top 5 regrets of the dying” a perennial favorite

Since it was published on February 1 an article in the UK Guardian headlined “Top five regrets of the dying” has consistently been among the top 10 most viewed Life and Style section articles. In fact, for a long period of time, that article was the #1 most read.

The article is based on a blog by a palliative care nurse, Bronnie Ware, called Inspiration and Chai. Having nursed many patients through their last days, she was able to summarize the five most common regrets they experienced, which were as follows:

I wish I’d had the courage to live a life true to myself, not the life others expected of me.
I wish I hadn’t worked so hard.
I wish I’d had the courage to express my feelings.
I wish I had stayed in touch with my friends.
I wish that I had let myself be happier

What is truly striking here is the immense popularity of this article. The UK Guardian tells us that the Life and Style section of the paper gets nearly three million (2.97) unique visitors a month. Clearly, it was read and discussed in many households across Britain and around the world.

This should give those of us in the healthcare profession great hope, and also a certain amount of pause. Many physicians, nurses, and social workers work from the basic assumption that the average person doesn’t want to hear anything about death. That thinking or talking about death is too frightening for them. But perhaps this assumption is wrong.

Could it be that doctors are more afraid to think and talk about death than the layman? Many readers of the UK Guardian appear ready and willing to consider their lives in light of the inevitable end that will arrive. They may even want to take steps to actively plan for their own death. So perhaps it is our own discomfort with raising the subject that needs to be addressed. Here’s hoping this opens the way to more, and more honest and direct, conversation about death.

As always, we are deeply grateful for your support, and we invite your responses to any and all that you have read here.

Don’t forget to sign the Morphine Manifesto!

photo by: Libertas Academica

March 2012

palliumindia — Wed, 28 Mar 2012 17:22:59 +0000

Dear Friends,

A few days back we had sent you our special issue of newsletter announcing designation of Pallium India’s Trivandrum Institute of Palliative Sciences (TIPS) as a World Health Organization Collaborating Centre (WHOCC) for Training and Policy on Access to Pain Relief.

A few of us were discussing the almost-too-fast growth of TIPS since its birth in 2006 and during this discussion gave ourselves these three promises, which we want to share with you.

We promised to ourselves that we shall not be complacent; but will recognize the responsibility (and the privilege) that has been bestowed upon us as agents of change for the person in pain and suffering.
We pledged that we shall recognize the contribution of each member of the team and value it, for do we not recognize that no one person can whistle a symphony and that it takes a whole orchestra to play it?
Above all, we renewed our commitment to our organization’s core value: we shall never, ever, permit our organization to grow bigger than the people we are privileged to serve.

To everyone who has supported us and nurtured our organization during its childhood: THANK YOU VERY MUCH.

IAHPC Traveling Scholarship Program Taking Applications

The International Association for Hospice and Palliative Care (IAHPC) has announced it will grant ten scholarships from the IAHPC Traveling Scholarship Program.

The money is to help support the travel of palliative care workers in developing countries to the 7th World Research Congress of the European Association for Palliative Care (EAPC). The Research Congress of EAPC will take place in Trondheim, Norway, June 7-9, 2012.

Application Deadline: March 31, 2012.

Apply online at the IAHPC website…

Applicants must be living in a developing country, be active members of IAHPC, and actively working in palliative care. Applications from physicians, nurses, psychologists and other disciplines are welcome. (Applicants can also join IAHPC on the site.)
Preference will be given to individuals who have not received an IAHPC grant in the past three years with accepted poster or oral presentations in the Congress.
EAPC will give discounted registration fees to individuals from developing countries. Winners of the scholarships will benefit from this discount.
Required will be proof of acceptance of the poster or oral presentation, along with a copy of the applicant’s current CV. Selected individuals are also eligible to receive a discounted registration fee from the Congress.

Results will be announced by early April. Click here for additional information about the EAPC Congress.

Cardiff University Offers Scholarships in Palliative Care

Exciting News! The Cardiff University MSc/Diploma in Palliative Medicine is now accepting applications for its distance learning scholarship program.

Application Deadline: May 31, 2012

The University has between ten and 20 Commonwealth Scholarships to support students in India and surrounding Commonwealth countries to undertake the degree. Last year, the University successfully recruited 18 students from India who are currently studying the first year of the course. The classes take place at Karunashraya Hospice, Bangalore, India.

Download the flyer: Cardiff University Diploma -MSc Scholarships 2012 (pdf)

Apply here: Commonwealth Scholarship & MSc Course

According to Julie Rowlands, Macmillan Clinical Nurse Specialist Palliative Care and Honorary Lecturer at Cardiff University, who sent us the announcement,

“they are an excellent cohort of mainly senior doctors from a wide geographical area. Their aim is to disseminate the knowledge they gain to improve palliative care provision in their regions.”

Here is some information about the program:

A wonderful scholarship opportunity is available for doctors and nurses in India and neighbouring Commonwealth Countries to develop their palliative care knowledge and gain a well recognised qualification from an established course (originated over 20 years ago).
With Palliative Medicine becoming a specialty in India these scholarships are timely for doctors wishing to pursue this branch of medicine. The course would also stand doctors in good stead for completing an MD in palliative medicine.
Our team are committed to supporting palliative care in India and in 2007 Cardiff University signed a formal Memorandum of Understanding with the Bangalore Hospice Trust to consolidate our partnership.
The Diploma in Palliative Medicine teaches best practice in pain management, symptom control, ethics, understanding and applying research evidence and effective communication skills as well as the psychological and social care aspects of patients with life limiting disease.
This exciting distance learning programme allows clinicians to study palliative care in the context of their own clinical practice. The MSc dissertation supports you in undertaking a unique piece of palliative care research.
Our Indian students have identified that completing the course has increased their knowledge and skills and allowed them to develop services and educate more effectively.

A Very Special Summer Camp

Palliative care is a personal kind of care.

It is provided in the home whenever possible. This means that the team gets to know the family, becoming part of their support system. It wasn’t long before we realized that children are highly affected when their parents become ill with cancer or other life-limiting diseases.

Keeping this is mind, we are organizing a 3-day summer camp for children age 12-18 with parents who have had life-limiting diseases. The event will take place from the 19th to 21st of April 2012 in JMM study center, Mannanthala, Trivandrum, Kerala.

The organizers will provide personality development training, creative activities, entertainment and one day of outing to museum and planetarium. It will provide the kinds of activities that allow the children a precious opportunity to leave all their grievances behind for a few days and enjoy themselves.

Pallium India currently provides educational support for 150 children. Beyond financial aid for education, we also aim to see these young people grow up as responsible, confident individuals with good self-esteem.

Read one of the children’s stories below. (Note: names are changed for confidentiality.)

Let me introduce you to Archana, a bubbly 12-year-old who loves singing film songs and playing with her friends. Like other children of her age she used to go to school and dreamt of acquiring enough education to support her family one day.

Everything changed when her father Rajappan, 43, was diagnosed with cancer. A daily wage earner, he could no longer support his family, let alone find enough money for his treatment.

Poverty forced Archana to drop out of school. As it turned out, this was just the beginning of her troubles. Neighbours who were supportive in the beginning started turning up less often. Even her playmates in the neighborhood stopped talking to her due to misconceptions and myths regarding cancer.

Within a few months what seemed like a promising future for this school girl turned out to be a murky tunnel with no light at the other end.

Pallium India stepped in and provided funds for both Archana and her sister so that they could stay in school. The organization also assessed the home situation, and purchased a sewing machine for the family so that they could earn money from home.

In all, ways to help them to blossom into the little flowers they were born to be.

Palliative Care Refresher Course Offers Much Needed Support

Pallium India’s six week course in Palliative Medicine has become popular among palliative care physicians.

But more often than not, when they return to their respective institutions they find they feel isolated and lacking support.

Other physicians around them may deem the person-centered approach we teach strange or unacceptable. So too the disclosure of diagnosis, use of opioids or other key end-of-life care concepts are often out of sync with the mainstream.

Doctors who complete the course may also have little opportunity to seek help to cope with problems that crop up, or to update their knowledge.

In light of this, Pallium India conceived the idea of regular refresher courses as one of the means of developing a support system for these physicians and for their palliative care units.

The two-day refresher course on the 17th and 18th of March 2012 was conducted with the support from Indo-American Cancer Association (IACA) and JivDaya Foundation (JDF). IACA provided financial support. By conducting the course back-to-back with the JDF Alumni meeting on 16 March, we could avoid duplication of travel costs of several participants.

The faculty comprised of Dr Odette Spruyt, Dr V Nandini, Dr Sushma Bhatnagar, Dr Anjum Joad, Dr Charu Singh (Course coordinator) and Dr M.R.Rajagopal.

All the sessions were designed to be interactive. Presentations were generally limited to 20 minutes, with plenty of time for Q&A and experiential exercises. Here is some of the feedback we received:

“Very useful, refreshing, motivating, stimulating”

“Important forum to clear doubts”

“My practice will become polished, efficient and more evidence based”

“Interaction with other palliative care physicians has helped as I’ve learnt how others manage patients. It has improved my confidence level”

We thank IACA for funding the project, JDF for its support, CanKids for providing the venue and facilities and Dr Odette Spruyt and colleagues who funded their own travel and other expenses.

IAHPC Develops List of Essential Practices in Palliative Care

Press Release from the International Association for Hospice and Palliative Care (IAHPC):

The International Association for Hospice and Palliative Care develops a List of Essential Practices in Palliative Care (download)

(Houston TX) – In a project which included the participation of individuals and representatives of pain and palliative care organizations, the International Association for Hospice and Palliative Care (IAHPC) recently developed a list of essential practices in palliative care.

Under the framework of the “essential” concept, the IAHPC decided to work in different projects aimed to identify the “essential” components for palliative care. This list of Essential Practices follows the IAHPC List of Essential Medicines in Palliative Care developed in 2007 and the Opioid Essential Prescription Package developed in 2011.

The list of essential practices in palliative care for health workers working in primary care includes those practices aimed at meeting the most prevalent physical, social, psychological and spiritual needs of palliative care patients and their families.

To work on this proposal, IAHPC formed a working group which included board members of IAHPC and external advisors from the field. The working group developed a plan of action and methodology which included a Delphi process among 425 health practitioners, primary care providers, and palliative care experts from 63 different countries around the globe, and a ranking survey with representatives from 45 international palliative care and pain relief organizations.

– Read the full press release here…

Our USA arm, Pallium India-USA continues to be active and busy…

A Meaningful Game

Many of us think we know how we want to live our lives. But how many have sat down and discussed how we’d like our lives to end?

The Go Wish card game is a powerful tool that we have recently discovered and used. It is a thought-provoking and helpful way to bring out one’s core personal values for end of life care that we wish to receive. Here is the description of the game from the web site:

Go Wish gives you an easy, even entertaining way to talk about what is most important to you. The cards help you find words to talk about what is important if you were to be living a life that may be shortened by serious illness.

Playing the game with your relatives or best friends can help you learn how you can best comfort your loved ones when they need you most.

Each deck has 36 cards. Thirty-five of the cards describe things that people often say are important when they are very sick or dying.

The cards describe how people want to be treated, who they want near them, and what matters to them.

One card is a ‘wild card.’ You can use this card to stand for something you want that isn’t on any of the other cards.

This past November, Pallium India-USA met to try out using this important tool. We wanted to find out about our own end of life plans and questions, as well as to discover the best ways to serve the community as hospice volunteers and advisers on end of life planning.

Ms Cindy Safe, Executive Director of the Coda Alliance, a community-based, not-for-profit organization that helps individuals and their families plan and prepare for the concluding passages of life led the activity. It took place at member Saroj Pathak’s house in Los Altos Hills, CA.

Very interesting discussions followed. For the participants, who are involved in the field as Pallium India-USA volunteers, and for many of us, also as healthcare professionals, it was an eye-opening experience. We were surprised to learn, for example, how a phrase like “maintain my dignity” held different meanings for different people.

A worthwhile activity, and we highly recommend Ms Safe and the Go Wish game to anyone as a way to begin opening up and talking about this important topic.

PLAY ONLINE! Try the Go Wish Game here…

Breaking Down Barriers to Advance Care Planning

What are your wishes for the end of your life?

This is not always an easy topic to raise. Fear, unease, and denial are common responses. Even for those who have already been diagnosed with a serious or life limiting disease, committing the plans to paper is often emotionally challenging.

Pallium India-USA has made it its mission to educate the Indian community living in the USA about how to embark on this kind of advance care planning. They take a culturally sensitive approach that is working well as they reach out to the community.

Pictured from left to right: Saroj Pathak, Jayashree Desale, Mira Nagrani, Zarina Kaji, Madhu Khanna, Dr Raji Ayyar, Dr Jerina Kapoor

On March 21, 2012, Pallium India-USA gave a presentation to the Seniors at the India Community Center in Cupertino, California. The talk was greatly appreciated by the many seniors in the community who turned out for the presentation.

The event started with an introduction by Dr Jerina Kapoor, chair of the organization, about Pallium India-USA’s mission and the significance of Advance Health Care Directives in our lives.

A packed house at the India Community Center

Dr Raji Ayyar, an oncologist, then gave a powerful presentation on the details of Advance Health Care Directives, enriched with examples from her own professional and personal life.

Pallium India-USA volunteer Ms Zarina Kaji then took time to explain to the audience about the organization’s Hospice Volunteer Program.

To cap it off, participants took home copies of a user-friendly California Advance Health Care Directive form.

In all, time well spent for both the presenters and audience members.

IN OTHER NEWS

50/50: A Must See Film

You cannot afford to miss the feature film “50/50” directed by Jonathan Levine.

Inspired by a true story, the film shows you a 27 year old man given a 50% chance of cure – a story of cancer, its treatment and human relationships:

The insensitive, jargon-filled disclosure of the diagnosis;
the patient’s predictable reactions (predictable to everyone except the doctor);
the artificial touch by the psychologist who is trying hard to keep therapeutic distance (she also has the agenda of including this case history in her dissertation! So familiar!);
the camaraderie among patients, and…
the broken relationships and evolution of new meaningful bonds.

This film is a must-see for everyone in medical and related professions. Our friends at SevenPonds Blog have a well-written review that you might also want to read:

“The movie is at once a comedy, a drama, and a romance – you’ll laugh one second and cry the next, and leave ultimately satisfied…”

The director tries hard to keep us happy in the end. The disease gets cured, the cancer survivor and the psychologist get united, and presumably, are supposed to live happily ever after.

Well, may be, Jonathan Levine will bring out another film some day about the struggles of the cancer survivor, especially in a country like India.

50/50 official website
Watch more clips here, available now on DVD or rent the full film on Youtube.

More Attention on Access to Pain Relief as a Human Right…

Nigeria Improves Access to Pain Relief

We were very pleased to hear last week from Meg O’Brien, Ph.D., director of the Global Access to Pain Relief Initiative (GAPRI) of its collaboration with the Nigerian Ministry of Health.

We were even more heartened to see that the story has now been picked up by the New York Times, in an article headlined “Nigeria to Import Morphine in Pain Relief Initiative”by health reporter Donald G. McNeil, Jr. Meg sent us this information:

… the Honourable Minister of Health of Nigeria, Prof. C.O. Onyebuchi Chukwu, held a press conference at the Abuja Sheraton hotel to announce a new collaboration with the Global Access to Pain Relief Initiative (GAPRI) to make essential pain relief available for Nigerians who need it.

The first step in the effort was the initiation of an emergency procurement of 26 kg of morphine by the government. Since only 1 kg has been procured since 2007 and Nigeria has the largest unmet need for pain relief in Sub-Saharan Africa, this represents an important first step to changing the landscape of access to pain relief both in Nigeria and in the region.

The Minister of Health earlier this month signed an agreement with GAPRI to provide technical assistance to the government as well as provide a full-time staff member who will serve as the Special Assistant to the Director of the Food and Drug Services Department on Access to Pain Relief.

This progress is a direct result of lobbying by the national Cancer Control Programme and support from the Center for Palliative Care, Nigeria, the Hospice and Palliative Care Association of Nigeria, the African Palliative Care Association, and Hospice Africa Uganda.

GAPRI’s involvement would not have been possible without the support of these organizations, and particularly, Prof. Isaac Adewole and Prof. Olaitan Soyannwo, who invited us in and helped us to plan the technical proposal.

The press release from the Hon. Minister is available here: http://www.uicc.org/programmes/nigeria-announces-collaboration-gapri-improve-access-essential-pain-medicines

Congratulations to all who were involved in this major achievement.

Global Pain Crisis on CBS News

The media coverage of the global pain crisis appears to have truly hit the tipping point.

In a segment aired on March 11, “A world of pain,” CBS News in the USA discussed the pressing need for access to pain relief in the developing world.

The segment was developed with the research done by a group of University of British Columbia students in partnership with Al Jazeera. You may have already heard about their documentary, Freedom From Pain.

CBS News anchor Bob Simon spoke with Human Rights Watch Senior Researcher, Diederik Lohman, a tireless advocate for pain relief and palliative care in the developing world, who provided much needed context on how the pain crisis began and what needs to be done to ensure that no one suffers unnecessarily.

“When we started working on this, I was actually struck by the parallels you see in the testimony you get from your traditional torture victim and someone who has cancer pain that is not relieved.And so what you see is that your typical torture victim will sign a confession and the torture ends. The patient with pain doesn’t have that option.”

The news piece also includes a map of the world that shows the stark contrast between wealthy countries and poorer ones, in terms of their access to morphine for medical use. (@1m28s)

There are further interviews with palliative care leaders such as Dr. Anne Merriman and Dr. Mhoira Leng, and some heart wrenching but powerful stories of the hope that pain relief has brought to patients in Africa.

We congratulate the students at University of British Columbia, along with HRW and the others in the segment, for so clearly demonstrating to a US audience that pain relief is a basic human right.

Jivdaya Foundation’s Palliative Care Efforts Grow by Leaps and Bounds

JivDaya Foundation (JDF) based in Dallas, Texas, USA was founded by Dr Vinay Jain and his wife. The foundation got into palliative care work in India in 2010 and started supporting three organizations. In 2011, the list grew to about a dozen new ones. Great progress indeed, and we send our congratulations to Dr Vinay Jain and team.

JDF held its annual review meeting in Hotel Mapple Emerald, New Delhi on 16 March 2012. Representatives from all JDF-supported centers and potential collaborators got together to share experiences and to make plans for future. This turned to be a good opportunity for many working in the field to connect in person and learn from one another.

Dr Vinay Jain does a great deal towards strengthening organizations for the long haul. JDF assists palliative care teams treating cancer patients by funding salaries of essential staff and by facilitating a system of documentation. Pallium India’s Trivandrum Institute of Palliative Sciences (TIPS) is one of the recipients of JDF’s assistance.

Thank you very much Dr Vinay Jain and team!

Image: JivDaya Foundation web site

Awarding-winning LIFE Before Death Series continues…

Here are the 4 films released in March:

PARTING SHOT

Does Anger Have a Place in Our Work?

Many of us have come to see anger as a negative emotion. But, can it have any positive effect? Let us tell you how the question came up.

Dr Robert Twycross is the palliative care guru of India. He taught almost all the first generation palliative care physicians in India and through them, the subsequent generation. (See the writeup about our Bruce Davis Training Centre to see how his pioneering work continues to inspire.)

He has retired now, but came back to India and took part in the annual conference of the Indian Association of Palliative Care (IAPCON 2012) organized by Dr Arundhati Chakraborty, held in Kolkata last month. In a moving event, his students gave him a plaque of honor. We strongly recommend that you take half an hour to see and to listen to his entire lecture – CLICK HERE TO WATCH THE LECTURE ON OUR BLOG…

If you can’t spare half an hour (we pity you!) here are some gems from his talk:

1. You need to be angry. Do you not have enough to be angry about?

99% of the needy in India do not have access to pain relief;

Most of some 300 odd medical colleges in the country (except for some five or six) fail to teach pain management and palliative care.

These facts alone may make “anger in compassion” well up in you, forcing you in to action. If so, let that anger be a catalyst for change!

2. It’s time to redefine what constitutes a medical emergency.
It should include, for example, someone with a limited life span who has not had a good night’s sleep in three months.

3. Miminise formality, maximise humanity.
The bigger your organization becomes, the more formal it becomes. It takes effort to retain humanity.

Dr Twycross ended his lecture by quoting Pallium India newsletter of March 2009. He asked all the young people in the audience to take down the quote, put it on a plaque and to keep it on their wall:

“We should not permit the growth and routinization of palliative care to take away its soul. It will be a happy day when palliative care reaches most of the needy in the country; but it will be a sad, sad day, if in the process palliative care comes to be delivered just with the brain, and the ‘eyes of the heart’ do not open any more!”

As always, we are deeply grateful for your support, and we invite your responses to any and all that you have read here.

Don’t forget to sign the Morphine Manifesto!

February 2012

palliumindia — Mon, 27 Feb 2012 11:25:23 +0000

Dear Friends,

For all of you who have been faithful supporters of the palliative care movement, we now have cause for celebration.

Over the past few weeks, the global pain crisis has hit the mainstream. People are talking about it on the radio, on TV, in newspapers, and across the Internet on blogs and social networks. They are recognizing that we need to do more, much more, to ensure that everyone on earth has access to pain relief and quality palliative care when and if they need it.

The impetus? The release of the feature film “LIFE Before Death” on the 1st of February in Singapore, and the numerous screenings which followed all over the globe.

The film’s honest and accessible look at pain management and end-of-life questions struck an emotional chord with audiences around the world.

The film, and the meetings and connections it created, has led to new initiatives and partnerships.

“LIFE Before Death” Hits Home with Audiences

The documentary “LIFE Before Death” continues to wow audiences around the globe, with its unflinching, emotionally accessible look at the need for palliative care. This past weekend, it screened in the capital city of Australia, Canberra, at Parliament House Australia.

Over 200 people attended the nearly sold out showing. Palliative Care Australia rolled out an actual red carpet for the event, and hosted a pre-screening party. The Hon Mark Butler, Minister for Ageing and Mental Health, introduced the film and then stayed to watch the film, which deeply moved him.

Luminaries from palliative care and cancer were in attendance. Dr Scott Blackwell, David Hill and Dr Yvonne Luxford all spoke on the issue prior to the screening.

There were several ministers in the audience along with doctors, nurses, patient advocates, pharmaceutical industry reps, NGO reps and bureaucrats as well as general audience. Two senators leading the inquiry into palliative care spoke to the audience following the screening.

The film was screened with a high level of audience interaction: laughs, gasps and tears. When the credits rolled, the audience was initially silent … and then erupted with applause.

After the screening, directors Sue Collins and Mike Hill fielded a lively Q&A session. Mike writes to us in an email:

“I made a point of wearing the Stop the Pain tee shirt and about 10 people asked me if they could get one after the screening. Someone even asked me to take it off on the spot and give it to them when I was going to the bathroom.”

Our warmest congratulations to Mike, Sue, and all the others who made this remarkable film and video series.

The level of awareness of this crucial issue is growing by leaps and bounds thanks to their efforts.

BUY THE DVD & HOST A SCREENING!

Recognition At Last: Palliative Care is Finally Having Its Day

Across the global media over the past week–from Singapore to India to Kenya–there is talk of the need for appropriate pain care.

The spark? The release of the documentary film “LIFE Before Death,” and numerous screenings on World Cancer Day, February 4.

The response has truly been awe inspiring. We have been impressed not only with the number of newspaper articles, blog posts, and other items, but also with the high quality of coverage of this pressing issue.

For example, The Straits Times of Singapore ran an article in their Sunday edition, “Doctor’s pain relief mission for terminally ill” (subscription req’d), that provided a solid context to help people understand the crucial need for this type of medicine.

The Times of India had a piece, “Helping face death in dignity“ (subscription req’d), that provided a compelling history of the movement for palliative care in India, with a focus on Pallium India. The article sums up the progress that has been made:

“The Kerala model of palliative care has begun to spread the wings elsewhere in the country. Small movements have been successful in states like Andhra Pradesh, Uttar Pradesh, West Bengal, Bihar and Mizoram. Pallium India which has already set up a palliative care centre in Hyderabad is on the process of setting up full-fledged centres in the northern states also.”

Meanwhile, the New Indian Express gave positive coverage of the Morphine Manifesto, which now has over 2,300 signatures, and growing.

The Sydney Morning Herald in Australia ran a piece that picked up on the fact that the film “Life Before Death” is narrated by the well-known actor David Suchet, best known for his portrayal of the inimitable Hercule Poirot in the Agatha Christie mystery series. The headline reads “Poirot and the battle with pain,” and shows a picture of Suchet in his signature role, complete with waxed moustache and arched eyebrows. The article tackles the issue in a way that is both accessible to the general public and hard-hitting. It reads, in part:

“The absence of pain medication, especially morphine-style drugs, in the developing world has been a result of the focus on ‘cure rather than care’, poor health systems but also regulations against narcotics use.

Melbourne filmmakers Mike Hill and Sue Collins, say there is zero public understanding that the solution to the ‘appalling’ problem of untreated pain is simple – morphine is inexpensive and easy to administer.

‘I think it is one of the least recognised global health issues,’ Hill told the Herald yesterday.”

Thanks to this film and the many hands that went into disseminating its message, the issue is now on the media’s radar at a never-before-seen level.

The next step, of course, is to ensure that this spate of coverage isn’t lost as the next “big thing” grabs the press’s attention.

For those who are committed to seeing things through, there is much work to do, and much to be glad about.

“Stop the Pain” Promotion in Singapore

You can’t have missed the “Stop the Pain” banner at the top of the site, which takes you to our special Stop the Pain donation page.

To coincide with the premiere of the LIFE Before Death feature film and World Cancer Day, the Lien foundation organised a wonderful initiative in Singapore. 70 volunteers took to the streets of the City to distribute more than 20,000 syringe-shaped pens and information about the crisis in untreated pain. This from the Gabriel at Lien:

On 1 Feb, we have volunteers in Singapore to distribute pens with an insert, which says:

“Go to palliumindia.org and find out how just US$20 can provide a month’s pain relief to patients at the remarkable Pallium India – an organisation that’s changing the way people view palliative care.”

This will also be provided on the media releases.”

Why not donate? Remember, just US$20 = one month of pain relief.

We’ve also been given the wonderful news that in addition to the donations from supporters in Singapore, the Lien Foundation has pledged US$100,000 to Pallium India. Half of the funds will go to buying pain relief medicine for the poor and the other half to train doctors and nurses in pain treatment.

Thank you Lien Foundation, Volunteers and Donors!

Watch the interview with Assoc Prof Cynthia Goh and Dr Rajagopal on Channel News Asia’s AMLive on our blog…
News report in TODAY: The need for better pain management

World Cancer Day 4 February 2012

February 4th was the day that united the world in the fight against cancer through raising awareness, educating the public, and lobbying for change. It is only by every person, organisation, and government, individually doing their part, that the world will be able to reduce the global cancer burden. So get involved and do something this World Cancer Day – because Together it is possible!

JOIN MORE THAN 2,300 SUPPORTERS!

Thank You, Lien Foundation

The Lien Foundation in Singapore, the main player behind the now-famous “LIFE Before Death” movie, is going to support Pallium India in its efforts to promote development of Palliative Care in India.

A memorandum of understanding to this effect was signed on February 16, 2012 at Singapore’s Changi airport by Mr Lee Poh Wah, the radical philanthropist & chief functionary of the Lien Foundation, and Pallium India’s Dr Rajagopal.

Mr Poh Wah will soon be visiting India to see our work first-hand.

Thank you, Lien Foundation and Poh Wah. We look forward to Welcoming you to Trivandrum and our work together.

Awarding-winning LIFE Before Death Series continues…

The “Life Before Death” series of short movies continue to be released, one every week. They are not only very informative to the public; but also make powerful advocacy material for the palliative care community. Here are the two most films:

JOIN MORE THAN 2,300 SUPPORTERS!

Morphine is one of the world’s least expensive, most effective pain medications. Yet millions across the developing world and beyond are denied access to it. If you haven’t already, please do sign the Morphine Manifesto. And here are some more items of interest on the topic:

MORPHINE: The Essential Medicine!
Shattering Myths About Morphine
Shining a Light on Pain Relief
We also spotted this piece in the New York Times: A Motorcycle, MORPHINE and a Hospice.

FROM PALLIUM INDIA-USA…

Our USA arm, Pallium India-USA has been very busy of late raising funds and awareness for Pallium India’s work in India, along with developing programs to serve the Indian community in the USA that is in need of culturally sensitive guidance and care around end-of-life issues.

The group hosted a Special Event in Silicon Valley last month that drew a large crowd of Silicon Valley engineers, healthcare workers, and others who care about the issues. Dr. M.R. Rajagopal, chairman, gave an engaging and emotionally hard hitting talk that led to a lively discussion. The event was covered in the US newspaper, IndiaWest.

The San Jose Mercury News has been covering end-of-life issues on a wide ranging scale

IN OTHER NEWS

American Society of Clinical Oncology Recommends Palliative Care

Here is a clear recommendation from the American Society of Clinical Oncology:

“…substantial evidence demonstrates that palliative care—when combined with standard cancer care or as the main focus of care—leads to better patient and caregiver outcomes”

This provisional clinical opinion is based on seven randomised controlled studies.

The article emphasizes that palliative care should not be misconstrued as only “end of life care”.

“It is the Panel’s expert consensus that combined standard oncology care and palliative care should be considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden.”

Read in full: American Society of Clinical Oncology Provisional Clinical Opinion: The Integration of Palliative Care into Standard Oncology Care

Empowering Palliative Care Leaders

What an amazing initiative!

23 chosen leaders from 11 countries got together at The Institute for Palliative Medicine in San Diego, California, USA with 10 mentors and several coaches, from 5 to 13 February 2012.

The brain child of Dr Kathleen Foley and Ms Mary Callaway of Open Society Foundations, and developed and run by Dr Frank Ferris of San Diego and team, the Leadership Development Initiative (LDI) is a novel two year program.

The leaders do not learn palliative care here; they have had plenty of that already. At San Diego, they develop leadership skills, an obviously essential part of training of any pioneer.

With four leaders and one mentor from India – the Indian flag was prominent!

Watch a video on the Leadership Development Initiative (LDI) on our blog…

Bruce Davis Award Conferred

The winner of the Bruce Davis Gold Medal in Palliative Medicine has been announced!

Dr Sherley Christobel Louis, a postgraduate student of radiotherapy at Bangalore Medical College and Research Institute won the award for 2011 after she placed at the top in a special exam for the award. The Hindu reports:

Medical student wins Bruce Davis award

Sherley Christobel Louis, a postgraduate student of radiotherapy at Bangalore Medical College and Research Institute, has won the Bruce Davis Gold Medal Award for 2011 after she came first in the national-level Bruce Davis Gold Medal Examination. This was announced here on Friday by a spokesperson for the Institute of Palliative Medicine.

The examination for young doctors is conducted by the Kozhikode-headquartered Institute of Palliative Medicine, a World Health Organisation collaboration centre. The award, being given since 2004, had been instituted in memory of philanthropist Bruce Davis. It carries a purse of Rs.25,000 and a certificate. It would be presented to Dr. Sherley at the 19thinternational congress of the Indian Association of Palliative Care in Kolkota in February.

The news is also covered on the Palliative Care India blog.

Congratulations Sherley!

Bruce Davis, who provided the funding for the prestigious Rs.25,000 award for the gold medal, is a longtime supporter of palliative care in India. He funded the construction of the Institute of Palliative Medicine at Calicut, and is supporting Pallium India and several palliative care centers in India.

Pallium India have named our recently constructed training centre at our headquarters in Trivandrum after Mr. Davis.

Palliative Care PhD Opportunity in the UK

Rev. Hamilton Inbadas, a friend of Pallium India who currently is doing his PhD at the University of Nottingham, UK, sends us this information for the benefit of anyone who may be interested.

The Nottingham Life Cycle PhD Studentships in Palliative and End of Life Care

We are interested in applicants who can contribute to the development of an exciting and innovative portfolio of research and scholarly activity, with a particular focus on improving palliative and end of life care (including education) in ‘resource poor contexts’ in UK or non-UK contexts.

Full details and application information here…

Application Deadline: 28 February 2012

Nepal’s Dr Bishnu Dutta Paudel Bags Prestigious Award!

Pallium India came across Dr Bishnu Dutta Paudel first during the International Pain Policy Fellowship program at Madison-Wisconsin.

Dr Bishnu is an oncologist with keen interest in palliative care from Kathmandu. We have been greatly appreciative of the way in which Dr Bishnu tackled the opioid availability issue in Nepal and worked with the Government to establish a system for uninterrupted availability of morphine in Nepal.

We are glad to report that Dr Bishnu became the first winner of the Palliative Care Award for South Asian Countries, newly established by Cancer Aid Society (CAidS). The award is the brain child of CAidS’ dynamic chief functionary, Mr Piyush Gupta, and carries a purse of Rs. 100,000.

Dr Bishnu Dutta Paudel happened to be attending the Leadership Development Initiative at San Diego on the day the award was given out at the Annual Conference of the Indian Association of Palliative Care at Kolkata. His wife received the award on his behalf.

Congratulations, Bishnu!

Watch an interview with Dr. Bishnu Dutta Paudel of Nepal, Dr. Eva Rossina Duarte of Guatemala, and Ms. Karen Ryan of Madison, WI, USA discussing the International Pain Policy Fellowship and the work that they are doing in their respective countries on our blog…

Sri Padmnabha Theatre’s Blockbuster Generosity

On some convenient day you go to an ISO-certified movie house in Trivandrum city and watch a movie. OK, you enjoy the movie, but can you by any stretch of imagination think of that act helping someone in pain?

Well, this is true!

Mr Gireesh Chandran, managing director of Sri Padmanabha Theatre in Trivandrum City, has announced that from February 7, 2012 (their 40th anniversary!):

1% of profits from ticket sales will go to Pallium India to help poor patients.

Thank you Mr Gireesh and all who made this possible! All of us at Pallium India are grateful to you.

Some have called Sri Padmanabha: “A cinema hall always ahead of its time” – WE AGREE!

New Indian Express report: Watch film; aid palliative care

February 2012 Issues of Sahayatra Malayalam Newsletter

We are happy to announce that the February 2012 issue of SAHAYATRA, our monthly Malayalam newsletter, is now available for download here…

Time to Face the Pain

A man on vacation fractures his knee cap. The hospital has no opioids to relieve his pain. A couple of days of agony later, he is stopped at the airport on his way home. They would not let him fly because he was in too much pain!

This happened to Dr Josh Ruxin, Columbia University development expert and founder of Rwanda Works, he writes about it in the New York Times asking about palliative care:

Time to Face the Pain

Last year in Mexico, just a couple of days into my vacation, I fractured my kneecap. In the emergency room, through pain so severe I found myself yelling at all helpful parties around me, particularly my wife, the doctors noted that they did not have painkillers to send home with me. “WHAT!?” I screamed. “No oxycodone, hydrocodone, nothing?” They explained that Mexico’s drug laws had grown so strict due to the actions of the narcotraficantes that pain meds were tough to come by (and only provided to patients who had been admitted to the hospital).

Two days later at the airport, the gate agent for American Airlines nearly refused to let me fly because she could see how much pain I was in and thought I might force the plane to make an emergency landing. After much haranguing I was finally allowed to board and made it back home for surgery and painkillers. But this incident compelled me to look at the state of pain management in developing countries.

It is clear that we live in a world where inequities of healthcare are paramount: there are millions dying of AIDS in Sub-Saharan Africa for want of drug therapy, while expensive surgeries for cancer, heart disease, or even to repair an injury like mine is out of reach for the world’s poor.

But what of the inexpensive palliative measures for those experiencing pain? I don’t have to dig very deep in my memory to pull up countless images of people I’ve witnessed in excruciating, seemingly never-ending agony. In Cambodia I came across a man who had lost half of his arm clearing mines, and hours later at a health clinic, he still hadn’t received so much as a Tylenol.

Read the rest of this article here…

Commenting on the article, Alierias from Airville, Pennsylvania says:

“My heart bleeds for those who don’t have that option”

Dear Alierias, thank you for your compassion. Your heart is going to be very busy. It is going to have to bleed for an unbelievable 5 billions – 80% of the global population that have no access to effective pain relief.

What make it worse, are the opportunists who try to cash in on the pain, making sure that cheap effective opioids are not available, but that very expensive ones are.

Watch out for the “Morphine Manifesto” that global organizations are bringing out together on World Cancer Day, the 4th of February 2012, demanding access to simple inexpensive opioids before making expensive alternatives available.

In the meantime, dear Josh Ruxin, Alierias and all others who have that spark inside them demanding justice for those in pain, please keep the fire in your belly burning. We in developing countries need your help.

Thank you Meg O’Brien of Global Access to Pain Relief Initiative (GAPRI) for bringing this to our attention.

Painful Inequities: Palliative Care in Developing Countries, a NEJM article

What kind of world do we we live in? Purely due to misapprehensions, ignorance and callousness, we force people into a living hell!

Artur, a man in pain from advanced cancer is denied pain relieving medicines and now lives with a bottle of liquor and a gun beneath his pillow!

When Artur, a former KGB agent in Ukraine, developed prostate cancer that metastasized to his bones, his pain grew so intense that he moved hours away from his family so they would not witness his suffering.

“I don’t want them to see me cry,” he said.

Lacking access to the opioid regimens that we in the United States depend on to treat the pain accompanying end-stage prostate cancer, Artur turned to what he had available: a bottle of liquor and a gun beneath his pillow.

The article in New England Journal of Medicine (N Engl J Med 2012; 366:199-201) by Dr Daniela Lamas MD and Lisa Rosenbaum MD lucidly brings out the “painful equities” pertaining to palliative care in developing countries.

It brings out some positives and negatives in the Indian scene too – the complicated narcotics control system in the country as well as its recent simplification in some states.

The article quotes Meg O’Brien, who directs the Global Access to Pain Relief Initiative (GAPRI),

“There isn’t a single government that couldn’t procure morphine if they wanted it,”

The article concludes with the statement,

“With the recent United Nations conference on noncommunicable disease, the world has opened its eyes to the growing burden of cancer.

Closing the gap in cancer care will depend on marshaling limited resources toward disease-specific approaches to treatment and prevention.

Pain, of course, has no pink ribbon and no celebrity survivor. But layering pain treatment onto any evolving health care system, no matter the disease, is as reachable a goal as any.”

Refresher Course in Palliative Medicine

Pallium India, with support from JivDaya Foundation and Indo-American Cancer Association (IACA), is organizing a 2-day ‘Refresher Course in Palliative Medicine’ in New Delhi.

Dates: March 17 – 18, 2012

It is intended for practicing palliative care physicians for updating their knowledge and skills with stress on recent developments in this field. The areas that would be covered during this course include,

discussions on difficult pain management
difficult clinical situations like delirium
role and scope of palliative sedation
dealing with our limitations

Other issues and areas that will be covered: organizing palliative care units, media advocacy and self learning thru e-resources. Faculty includes Dr Odette Spruyt, Dr Sushma Bhatnagar, Dr V Nandini , Dr Anjum Khan Joad, Dr Charu Singh and Dr M.R.Rajagopal. The proposed venue will be CanKids‘ Training Center at J-161 A, Gautam Nagar, Near Green Park Metro Station, New Delhi.

Registration fee for the Course is Rs.1,000. Registration is free for centers funded by JDF and IACA and for centers supported by Pallium India. Those interested may apply with a draft made out to “Pallium India” payable at Trivandrum and sent to:

Mr V.Jayprakashan, CEO, Pallium India
S10, Vrindavan Housing Colony, Opposite Traffic Police Station, Pattom, Trivandrum – 695 004, Kerala, India
Email: info@palliumindia.org

PARTING SHOT

Much of the activity of the last few months has been one of global connection among those in the palliative care field. One key question that has come up in meetings is “with all the small hospices and palliative care organizations struggling to survive around the world, how much can and should we support one another?”

The answer, we believe, is that work that any of us does in one corner of the world reverberates in a positive way in another.

We can and must reach out to one another. Just as you would not walk by a person who has fallen down on the side of the road, so too you wouldn’t turn your back on a cry for pain relief, even if that cry came from halfway around the world. Simply by extending your hand, you lift up many.

As always, we are deeply grateful for your support, and we invite your responses to any and all that you have read here.

Don’t forget to sign the Morphine Manifesto!

January 2012

palliumindia — Wed, 25 Jan 2012 11:04:10 +0000

Dear Friends,

Is There a Caste System Among Diseases?

Power groups achieve a lot by advocacy and by collective bargaining. There are any number of organizations fighting for people with cancer or with HIV. Government programs in many countries support their treatment.

But if you have the bad luck to have an uncommon disease? Like Rahmath with systemic sclerosis, whom we blogged about a while back, no one wants you!

The USA’s National Institutes of Health (NIH) lists more than 6000 such uncommon diseases, and there are millions of people with such diseases.

At least that used to be the case… We are very very happy indeed to hear about the National Organization for Rare Diseases (NORD) in USA. Pallium India’s friend Dianne Gray, who lost her son to such a disease, is involved with this organization. A report from thesurvivorsclub.org, below.

May NORD lead to global action!

Rare disorder inspires Dianne Gray to become involved and help other families

Dianne Gray’ son Austin was 4 years old when he lost his vision and started falling. He was subsequently diagnosed with neurodegenerative brain iron accumulation, a rare disease which eventually killed him at the age of 14. However, the family’s often frustrating struggle to provide him with comfort and relief has spurred Gray to help other families dealing with un-researched conditions, according to ABC News.

Recalling the obstacles she and Austin faced in order to obtain the right diagnosis, treatment and support, Gray told the news provider about the helplessness she felt when doctors were not able to treat her son, or even alleviate his pain.

That is what inspired her to become involved with the National Organization for Rare Diseases (NORD), which sponsored the second annual National Rare Disease Day last Sunday.

NORD serves as a liaison for researchers and families coping with rare diseases, offering patient assistance programs and networking opportunities. It also collects donations as funding is among the most important obstacles to fighting these types of disorders.

According to the National Institutes of Health, there are more than 6,000 rare diseases affecting approximately 25 million Americans.

Read Dianne’s interview with ABC News here…

How many million stories of suffering would that work out to?

It is sad to see that there is often discrimination in the name of a diagnosis even in palliative care!

TIPS Clinical Service is Moving!

The clinical services of Trivandrum Institute of Palliative Sciences (TIPS), the outpatient and inpatient clinics and headquarters of the home visit program, have just moved from S.U.T. Specialty Hospital (Pattom) to:

S.U.T Royal Hospital, Kochulloor, Trivandrum, Kerala 695011
Phone: +91 9387296889

The move was unavoidable. Any inconvenience caused to our patients, families and visitors is sincerely regretted.

Our office and training center continue to be in the old location namely, S-10, Vrindavan Gardens, Pattom, Trivandrum 695004.

New CEO for Pallium India

We are glad to report that a volunteer-trustee of Pallium India, V Jayaprakasan has taken over as the Chief Executive Officer of Pallium India.

Dr V Jayaprakasan (right) is a retired Professor and Dean of Veterinary Sciences of the Kerala Agricultural University.

He came across palliative care when his dear wife Sushama got cancer of the pancreas. She is no more now, and his work in Palliative Care is the Taj Mahal that Jayaprakasan (JP as he is fondly called by the team) has built for the departed Sushama.

Welcome, JP, and thank you for all that you are doing for people in pain and suffering.

Palliative Care Comes to Agartala, Tripura State

We bring you good news!

Palliative care reaches yet another virgin state in India.

Under the dynamic leadership of Dr Gautam Majumdar in Agartala in the state of Tripura, the Regional Cancer Center now has palliative care.

It is one of the eight palliative care centers that Pallium India has had the privilege of catalyzing in the last few years in eight different North and North-East Indian states.

Agartala is one of the projects funded jointly by Savitri Waney Trust, Farida and Yusuf Hamied Foundation and Bruce Davis Trust.

A doctor-nurse team, Ms Rita Saha (nurse) and Dr Batan Janapathy underwent Six Weeks’ Certificate Course at TIPS, Trivandrum. Within one month of finishing the training program, they have already started home visits!

Congratulations, Dr Majumdar, Dr Janapthy and Ms Saha.

Out of Pocket (OOP) Health Care Spending in India

In these days of discussion about improving access to pain relief and palliative care in India, and in all developing countries, it is important to understand the background reality that most health care costs need to be out-of-pocket (OOP): there is no social security system or insurance system paying for health care.

In a Times of India Special Report, On Life Support, Subodh Varma brings up some important facts about out of pocket (OOP) expenses:

Economic theory would dictate that people would not buy goods or services that are too costly for them.

This may apply to chocolates and deodorants but healthcare cannot be dealt with in this way.

When somebody falls sick, the family will be forced to seek medical attention even if it means destroying their meagre budget.

along with some jaw-dropping statistics. In India:

personal expenditure on health care is 75%, vs. 12-13% in UK & USA.
public expenditure on health care stagnated at around 1% of GDP.
catastrophic OOP spending pushed 39–million people into poverty.
20% of sicknesses go untreated due to lack of money to see a doctor.
there are 5,583 persons per rural hospital bed (Ministry of Health’s Central Bureau of Health Intelligence (CBHI))

What the article does not say is how inappropriately much of the money is spent, and how palliative care could ensure that the meagre resources are spent appropriately and that suffering is mitigated at low cost!

Read the full article: On Life Support

Varma also quotes from the International Labour Organization‘s (ILO) World Social Security Report 2010/11

Avoiding Inappropriate Health Care with Advance Directives

An article in the Los Angeles Times, “Having to think about the unthinkable“, discussing advance healthcare directives assumes greater significance since we recently blogged about “inappropriate care“.

An advance healthcare directive allows someone to: “authorise a loved one or someone else to have power of attorney — or serve as your agent — to make healthcare decisions for you if you’re unable.”

The article begins with a quote from Dr. Neil S. Wenger, Director of UCLA’s Health System Ethics Center:

“I could show you case after case, I could bet you million-to-1 odds these patients would not want to be in this situation.”

He was talking about patients in critical condition who are “attached to machines, being kept alive” in hospitals, many of them suffering.

The answer, the author goes on to say, lies in people leaving advance directives.

It is not too soon for us to start doing it in India!

Thanks to Ms Sunshine Mugrabi for bringing this to our attention.

LA Times columnist, Steve Lopez, has many more interesting columns in his “Matters of life & death” series.

December 2011 & January 2012 Issues of Sahayatra Malayalam Newsletter

We are happy to announce that the December 2011 & January 2012 issues of SAHAYATRA, our monthly Malayalam newsletter, is now available for download here…

Another Award for Pallium India – Thank You Senior Citizens!

What a divine way to celebrate Christmas!

The Senior Citizens Association of Thiruvananthapuram celebrated Christmas by giving – to “Buds“, a school at Venganoor for mentally challenged children, to a home for destitute women and so on.

They gave their annual PMCMM Award to Pallium India – a Certificate of Honour and a cash award.

Senior Citizens Association, all of us at Pallium India are immensely grateful to you for this recognition and encouragement.

Thank you very much, and a very Happy New Year to all of you!

What Do the Elderly Suffer From?

Dr Supten Sarbadhikari invites your attention to a study conducted in Tamil Nadu and Kerala about the problems of the elderly. Reported in The Hindu, New Delhi edition:

Joint pain ails the elderly in Tamil Nadu; hypertension in Kerala

AARTI DHAR – THE HINDU - NEW DELHI, December 29, 2011

The commonest self-reported morbidity among the elderly in Tamil Nadu is chronic joint pain, while in neighbouring Kerala hypertension is highly prevalent, according to a new study conducted in the two States.

Over 57 per cent of senior citizens in Kerala suffer from hypertension and 32 from diabetes. The figures for Tamil Nadu are 20 and 14 per cent.

“The elderly are an important segment of our population. They have played a key role in shaping the future of the young India. Their share is expected to be at 12.4 per cent by 2026 [as per the Central Statistical Organisation's Situation analysis of the Elderly in India, 2011].” Therefore, it is essential “to make special provisions for the health care of the elderly and, in particular, offer treatment and diagnostic services for the management of non-communicable diseases. Also, it is essential to immediately initiate screening of people over 50 for key non-communicable diseases and simultaneously start health education for the ageing population,” says K. P. Rajendran, team leader of the research study.

The study was undertaken to validate the improvement brought about by projects run by HelpAge India and Cordaid (Catholic Organisation for Relief and Development Aid). It was done by the capacity-building organisation Four X 4 Consulting with support from the Institute of Palliative Medicine, Kozhikode, Kerala, and the Manakula Vinayagar Medical College and Hospital, Puducherry, covering 1,800 families in Tamil Nadu and 450 families in Kerala by random sampling.

In Tamil Nadu, the commonest self-reported chronic morbidities among the elderly were joint pain (61.3 per cent), eye and ear problems (38.4 per cent), hypertension (20.7 per cent), diabetes (13.9 per cent), heart diseases (4.4 per cent), respiratory illness (2.9 per cent), stroke (1.2 per cent) and mental illness (0.6 per cent).

In Kerala, 71.6 per cent of the elderly had at least one of the chronic morbidities at the time of survey with hypertension topping the list (57.3 per cent), followed by joint pain ( 37.5 per cent), diabetes and ear/eye problems (32 per cent each), heart disease (17.1 per cent) and asthma (11.4 per cent).

In Tamil Nadu, most of the chronically-ill elderly people (46.5 per cent) accessed government health care services and 31.4 per cent went to private hospitals. Five per cent accessed health care offered by village-based clinics of the HelpAge programme, while 15.2 per cent took no treatment. Utilisation of the Indian systems of medicine was less than 1.5 per cent on average.

In Kerala surprisingly most of the elderly received treatment from private hospitals (55.8 per cent) and 34.6 per cent from government hospitals. Five per cent adopted the Indian systems and 2.4 per cent did not take any treatment.

The study covered four domains of quality of life — physical health, psychological health, social relationships and environment.

Interesting that in Tamil Nadu, the majority of the elderly sought help from the Government agencies while Keralites seemed to seek private hospitals?

Why? Do Keralites have more money? Or is the Government’s health system better in Tamil Nadu than in Kerala?

The Hindu: Need for Palliative Care Stressed

From the Hyderabad, Andhra Pradesh edition of The Hindu, 6 January 2012:

Need for palliative care stressed

Roughly, there are two lakh cancer patients needing palliative care in State

There are countless number of patients, suffering from incurable ailments, in the capital and elsewhere who endure pain in silence. Such patients and their families are not aware of the applications of palliative care in controlling the pain and in the process lead a quality life, until it lasts.

Families also struggle to accept the fact that the terminally ill patients do not need a ‘cure’ but instead need palliative care to heal the pain. “There is a need for specialised palliative care departments in hospitals. It is not just cancer, patients due to other ailments like HIV, muscular dystrophy, dementia, end-stage and heart problems need pain relief. We are unnecessarily allowing them to endure pain in silence,” says executive member, Pain Relief and Palliative Care Society (PRPCS), Dr. Rohina R. Gupta.To drive home the virtues of palliative care and also to highlight the plight of terminally ill patients, the society is screening a documentary ‘Life Before Death’. The screening of the documentary will coincide with World Cancer Day, which is in the first week of February.

Palliative care is aimed at providing the patients with pain and symptom relief, spiritual and social support till the end of life. “Roughly, there are two lakh cancer patients needing palliative care in the State. This is in addition to patients suffering from other incurable diseases. Of them, only one per cent have access to morphine, which is a pain reliever and the rest just suffer in silence,” Dr. Rohina said.

Like many cancer hospitals, community cancer centres for HIV positive persons, secondary and primary health centres do not have palliative care departments. Such facilities do not have the necessary medications, including morphine, or trained health care workers.

“There is a need for develop State and national-level palliative care policies and strategies. Community-based and institution-based palliative cure is the need of the hour,” Dr. Rohina pointed out.The movie ‘Life Before Death’ is a multi-award winning documentary series that showcases the journey of health care professionals in 11 countries and their attempts to help terminal patients who desperately need palliative care. The documentary ‘Life Before Death’ comprises a feature film, 50 short films and a television documentary.Persons interested in contributing to palliative care can contact: 94916-66688

What Should Medicine Do When It Can’t Save Your Life?

“Our medical system is excellent at trying to stave off death with eight-thousand-dollar-a-month chemotherapy, three-thousand-dollar-a-day intensive care, five-thousand-dollar-an-hour surgery. But, ultimately, death comes, and no one is good at knowing when to stop”

Says Atul Gawande in the New Yorker of August 2, 2010.

But do not think that this is one of those articles that blindly advises against aggressive curative treatment. It is not.

Atul Gawande argues forcibly for a balance. And for the evidence in favor of combining life-prolonging treatment with palliative care.

“A two-year study of this “concurrent care” program found that enrolled patients were much more likely to use hospice: the figure leaped from twenty-six per cent to seventy per cent.

That was no surprise, since they weren’t forced to give up anything.

The surprising result was that they did give up things. They visited the emergency room almost half as often as the control patients did. Their use of hospitals and I.C.U.s dropped by more than two-thirds. Over-all costs fell by almost a quarter.”

Read the full article here and Dr Michael Minton’s comments in a previous blog post.

Top 5 Regrets of the Dying

Blogger Kelly Oxford quotes a nurse who wrote on the “Arise India forum“:

“For many years I worked in palliative care. My patients were those who had gone home to die.

Some incredibly special times were shared. I was with them for the last three to twelve weeks of their lives. People grow a lot when they are faced with their own mortality.

I learnt never to underestimate someone’s capacity for growth. Some changes were phenomenal. Each experienced a variety of emotions, as expected, denial, fear, anger, remorse, more denial and eventually acceptance.

Every single patient found their peace before they departed though, every one of them.

When questioned about any regrets they had or anything they would do differently, common themes surfaced again and again.

Here are the most common five:

I wish I’d had the courage to live a life true to myself, not the life others expected of me.
This was the most common regret of all. When people realise that their life is almost over and look back clearly on it, it is easy to see how many dreams have gone unfulfilled. Most people had not honoured even a half of their dreams and had to die knowing that it was due to choices they had made, or not made.It is very important to try and honour at least some of your dreams along the way. From the moment that you lose your health, it is too late. Health brings a freedom very few realise, until they no longer have it.

I wish I didn’t work so hard.
This came from every male patient that I nursed. They missed their children’s youth and their partner’s companionship. Women also spoke of this regret. But as most were from an older generation, many of the female patients had not been breadwinners. All of the men I nursed deeply regretted spending so much of their lives on the treadmill of a work existence.By simplifying your lifestyle and making conscious choices along the way, it is possible to not need the income that you think you do. And by creating more space in your life, you become happier and more open to new opportunities, ones more suited to your new lifestyle.

I wish I’d had the courage to express my feelings.
Many people suppressed their feelings in order to keep peace with others. As a result, they settled for a mediocre existence and never became who they were truly capable of becoming. Many developed illnesses relating to the bitterness and resentment they carried as a result.We cannot control the reactions of others. However, although people may initially react when you change the way you are by speaking honestly, in the end it raises the relationship to a whole new and healthier level. Either that or it releases the unhealthy relationship from your life. Either way, you win.

I wish I had stayed in touch with my friends.
Often they would not truly realise the full benefits of old friends until their dying weeks and it was not always possible to track them down. Many had become so caught up in their own lives that they had let golden friendships slip by over the years. There were many deep regrets about not giving friendships the time and effort that they deserved. Everyone misses their friends when they are dying.It is common for anyone in a busy lifestyle to let friendships slip. But when you are faced with your approaching death, the physical details of life fall away. People do want to get their financial affairs in order if possible. But it is not money or status that holds the true importance for them. They want to get things in order more for the benefit of those they love. Usually though, they are too ill and weary to ever manage this task. It is all comes down to love and relationships in the end. That is all that remains in the final weeks, love and relationships.

I wish that I had let myself be happier.
This is a surprisingly common one. Many did not realise until the end that happiness is a choice. They had stayed stuck in old patterns and habits. The so-called ‘comfort’ of familiarity overflowed into their emotions, as well as their physical lives. Fear of change had them pretending to others, and to their selves, that they were content. When deep within, they longed to laugh properly and have silliness in their life again.When you are on your deathbed, what others think of you is a long way from your mind. How wonderful to be able to let go and smile again, long before you are dying.

When you are on your deathbed, what others think of you is a long way from your mind. How wonderful to be able to let go and smile again, long before you are dying”.

More Good News from Guatemala!

Dr Eva Duarte MD, Chief of Palliative Medicine and Symptom Control Department at National Cancer Institute of Guatemala, writes to share a piece of good news for all those interested in palliative care in developing countries:

The Guatemalan Government published yesterday in the official newspaper Diario de Centroamerica the Agreement of Constitution of the National Commission of Palliative Care of Guatemala, with a wide representative body of institutions.

For us, it is definitely the best gift to start the year!

Our Government will change on January 14th, and we are so glad that they decided establish this Ministry Agreement so we can continue to work with the new team.

LIFE Before Death #NEWS

Have you missed normal weekly short films from the “LIFE Before Death” series over Christmas and New Year?

Don’t worry, you haven’t missed a thing!

The team behind the series have paused the release schedule to focus on the upcoming premiere of the “LIFE Before Death” feature film’s official release on 01 February 2012.

Pallium India hears excellent reports about it from those who saw a preview at the Leadership Development Initiative at San Diego.

The man behind this advocacy initiative, Mike HIll, requests you to consider

Hosting a Screening – over 100 screenings in over 30 countries have now been confirmed. Pallium India will be screening the film on Feb 3 in Trivandrum.
Issuing a Press Release linking your activities with the release of the film (templates available)
Encouraging others to host or attend a screening
Providing him with Calls-To-Action that can be included on the project website that allow individuals to Do Something about the issue (ie Donate, Volunteer, Advocate etc)
Posting the Trailer to your website or Facebook page with an announcement about the upcoming release

As a pointer, please see the report in The Hindu: Need for palliative care stressed

If you’ve missed previous episodes, catch up on the LIFE Before Death website…

“Palliative”: Why So Taboo?

The word “palliative” seems to be taboo all over the world! For a long time, no one knew what the word “palliative” meant. When finally people start hearing about it, yet it is so misunderstood.

Read the following by Dr Kohar Jones… The man was a fighter, but that does not mean that he needed to be persuaded to fight against a windmill! His doctor realises with some regret that he should have encouraged the patient to take on a worthwhile fight:

The positive effects of palliative care on quality of life

“I’ve been a fighter all my life,” said my new patient, a middle aged man with thinning hair, a worried wife, and a dismal prognosis. He had worked all his life as a plumber with no health insurance. When he was healthy, it was okay. But now he was sick.

I was meeting him for the first time in the community health center where I work as a family physician, tending to all the health needs of a community, from birth to grave. One week earlier, he had gone to the local community hospital when he could no longer swallow. The emergency room doctors admitted him for a complete workup. Inside the hospital they found a tumor in his esophagus, and two in his lungs, one in each lobe of his liver, as well as in his adrenal glands.

Metastatic cancer, spread throughout his body.

The private oncologist who covered the for-profit community hospital where he had received his diagnosis would not see a man in his office who had no insurance. The oncologist directed the patient to me, expecting me to make urgent appointments with the oncologists at Cook County Hospital, Chicago’s county-financed public safety net system for the uninsured. They would provide top quality care, but it takes months for appointments to make it through the referral system, even when they are marked urgent.

“The oncologist told me you would help me,” he said.

Read the rest of this piece at KevinMD.com…

Sad State of Palliative Care in Maharashtra

An article in “Mid-Day” highlights the need for improved palliative care facilities in the state of Maharashtra and brings to attention the contrast between Kerala which has more than 170 palliative centers and Maharashtra which has only three!

The article, “Till the end…”, describes the efforts that the palliative care leaders, Dr M.A Muckaden, Dr Manjhiri Dighe and others are making to bring in a palliative care policy in the state and also to improve palliative care education to professionals.

The Maharashtra Health Minister, Suresh Shetty, responds:

The decision of a policy has to be taken by the Medical Education department.

As far as making palliative care a compulsory part of the medical curriculum is concerned, we have forwarded it to the Directorate of Medical Education in Nashik.

The decision has to come from there.

A lot more advocacy is needed, obviously!

Union Cabinet Approves National Policy on Narcotic Drugs & Psychotropic Substances (NDPS)

The Union Cabinet on Thursday approved the National Policy on Narcotic Drugs and Psychotropic Substances (NDPS) drafted by the Ministry of Finance, Department of Revenue.

We are glad to note that the policy specifically mentions the need for making opioids available for palliative care.

It is also learnt that the cabinet has also decided to go ahead with privatization of manufacture of poppy concentrate from poppy straw. This has so far been the monopoly of the Government.

Cabinet approves National Policy on Narcotic Drugs and Psychotropic Substances

New Delhi, Jan 12 (ANI): The Union Cabinet on Thursday approved the National Policy on Narcotic Drugs and Psychotropic Substances (NDPS) drafted by the Ministry of Finance, Department of Revenue, in consultation with the concerned Ministries and Agencies of Government of India and the State Governments.

The salient features of the policy are as follows:

The policy recommends production of Concentrate of Poppy Straw (CPS) in India by a company or body corporate. This would enable India to retain its status of a traditional supplier of Opiate Raw Material (ORM) to the rest of world, while remaining competitive.

The consumption of poppy straw by addicts will be gradually reduced and finally stopped in a time frame decided by the States.

On the illicit cultivation of poppy and cannabis, the policy emphasizes use of satellite imageries for detection of illicit crop and its subsequent eradication and development of alternate means of livelihood in respect of cultivators in pockets of traditional illicit cultivation.

The private sector may be allowed production of alkaloids from opium. At present alkaloids from opium are produced only in Government Opium and Alkaloid Factories (GOAFs).

Non-intrusive methods of regulating the manufacture, trade and use of such psychotropic substances will be introduced,

Emphasis will be laid on adequate access to morphine and other opioids necessary for palliative care, a strategy to address street peddlers of drugs, periodic surveys of drug abuse to gauge the extent, pattern and nature of drug abuse in the country, recognition of de-addiction centers.

There will be a time bound plan of action, detailing the steps to be taken by different Ministries/ Departments/ agencies, in response to the recommendations of the International Narcotics Control Board.

The policy attempts to curb the menace of drug abuse and contains provisions for treatment, rehabilitation and social re-integration of victims of drug abuse. Implementation of the provisions of the policy will lead to reduction of crime, improvement in public health and uplifting of the social milieu.

The NDPS Policy will serve as a guide to various Ministries and organizations and re-assert India’s commitment to combat the drug menace in a holistic manner.

There are four broad aspects of narcotic drugs and psychotropic substances:

administration of the NDPS Act and Rules framed there under

legal production, manufacturing, trade and use of narcotic drugs and psychotropic substances for medical and scientific uses

drug (Illicit) supply reduction

drug (Illicit) demand reduction

Ranbaxy Public Health Award to Pallium India’s Dr Rajagopal

This year’s Ranbaxy Public Health Award goes to Pallium India’s chairman, Dr M.R. Rajagopal.

Previous winners of the award include,

Mr. S.R. Rao, former Commissioner of Surat
for his contribution to the cleaning of the town in the aftermath of plague in 1990s and for setting up systems which will keep the town clean.
Justice K. Narayana Kurup, Former Acting Chief Justice and Judge, High Court of Madras
in recognition of his outstanding contributions on wide ranging issues of societal concern and especially his relentless crusade against tobacco.
Prof. K. Srinath Reddy, President, Public Health Foundation of India
in recognition of his contribution towards promotion of health, prevention of cardiovascular and other chronic diseases and for his role in championing tobacco control.

The Award Presentation Ceremony will be on February 27, 2012 at the Jawaharlal Auditorium, All India Institute of Medical Sciences, New Delhi.

Indian Rural Medical Degree (MBBS) Abandoned?

We’ve just learnt that the much-awaited Indian Rural MBBS, which we had blogged about in October 2010, has been abandoned.

The MBBS will be replaced by a 3-1/2 year course leading to a BSc in Community Health Care.

The graduates are expected to serve at the sub-centres as a link between the nursing auxiliaries/public health nurses and the doctor at the Primary Health Center.

Let Us Rejoice: No Polio in the Last Year!

13th of January is a very special day. Two years back, in 2010, India was the country with the largest incidence of poliomyelitis in the world.

On the 13th of January 2012, India completes one year without a single report of wild poliomyelitis!

Tremendous achievement indeed!

Apologies for bringing in unpleasant thoughts to celebration time. But do let us spend a moment to think how India will treat the survivors from previous years!

IAPCON 2012: Preconference CME – UPDATE

Dr. Sanghamitra Bora from Cancer Centre Welfare Home & Research Institute, Kolkata has sent us a detailed programme for the Preconference CME to be held at IAPCON 2012.

View on their website or download the pdf here.

Recognition for Palliative Care: Award to Alpha Pain Clinic

Alpha Pain Clinic, founded by Mr K.M. Noordeen, is to be this year’s recipient of the “Chirayinkeezh Ansar Memorial Award“.

Chosen by Abu Dhabi Malayali Samajam, the award is in recognition of Alpha Pain Clinic’s social work among people in pain and suffering.

The award scroll and the purse of Rs. 100,000 will be received by Mr Noordeen in Abu Dhabi.

Congratulations Alpha!

Young Minds “Meet the Scientist” in Kolkata

Dr. Sanghamitra Bora from Thakurpukur Cancer Center and Research Institute, Kolkata, writes to say,

I was one of the panelists in “Meet the Scientist” program in Eastern India Science Fair at Kolkata.

It was good to be with young students of 4th to 12th. There were about 250 young children and you won’t believe, they came up with such beautiful questions.

One sixth standard student asked me: “Is there a relation between science and religion? And what is it?”.

Another question was: “Do you mean to say that you have been defeated by cancer once it has been declared incurable?”

Many of them took my number and shared their experiences while dealing with cancer patients who were their relatives.

Congratulations, Dr Sanghamitra.

No doubt, advocacy would be most worthwhile when we work with young minds.

PARTING SHOT

Inappropriate Intensive Care

Systems develop as solutions to problems, but once developed, they have a tendency to fall into a rut and go on even when perceived to have flaws.

Sometimes even to become part of the problem.

Intensive care in the context of incurable diseases is a case in point.

What is the purpose of intensive care?

It is aimed at Intensive monitoring and Intensive therapy so that individual organ dysfunctions are identified early and corrected and lives are saved. Which is a great thing to achieve when the life is indeed salvageable and when the salvaged life is of reasonable quality.

Unfortunately, medical science, by and large, seems to have failed to restrain this facility with the result that even people who are obviously dying of incurable diseases are subjected to isolation in intensive care units where there is no difference between day and night, where they are imprisoned by monitors and devices with a tube in every orifice, where they die after prolonged suffering, devoid of human contact.

A study published by Ruth D Piers and colleagues in the Journal of American Medical Association (JAMA. 2011;306:2694-2703, 2725-2726) found that 27% of respondents (doctors and nurses working in intensive care units) perceived inappropriate care happening in at least one patient under their care on a particular day.

And in 89% of such cases, patients received inappropriately “too much” care.

But the system goes on, regardless.

Better protect yourself with “advanced care directives”!

December 2011

palliumindia — Tue, 13 Dec 2011 06:58:47 +0000

Dear Friends,

We bring you good news! Palliative care reaches yet another virgin state in India.

Under the dynamic leadership of Dr Gautam Majumdar in Agartala in the state of Tripura, the Regional Cancer Center now has palliative care.

It is one of the eight palliative care centers that Pallium India has had the privilege of catalyzing in the last few years in eight different North and North-East Indian states.

Agartala is one of the projects funded jointly by Savitri Waney Trust, Farida and Yusuf Hamied Foundation and Bruce Davis Trust.

Congratulations, Dr Majumdar, Dr Janapthy and Ms Saha.

Major Step Forward for Pediatric Palliative Care

Thursday, the 8th of December 2012 was a special day for Trivandrum Institute of Palliative Sciences (TIPS), the flagship of Pallium India.

In collaboration with the Department of Pediatrics in S.A.T Hospital at the Government Medical College, Trivandrum, and the Indian Academy of Pediatrics (Trivandrum branch), we started a trial run of a weekly Pediatric Palliative Care Clinic based at S.A.T Hospital.

Dr Lalitha Kailas (Head of Pediatrics), Dr Elizabeth (Superintendent of S.A.T Hospital), Dr Mohammed Kunju, (Head of Pediatric Neurology and President of Indian Academy of Pediatrics) give leadership to the program, while Dr Kalpana and Dr Hariprasad will be directly in charge of patient care from the part of the Government Institution.

The Pallium India team will be led by Dr Sithara Raman, the pediatrician in the Pallium India team.

It is a privilege to work with children. We are glad we have the opportunity.

International Journal of Palliative Nursing Awards 2012

International Journal of Palliative Nursing and MacMillan Cancer Support, are delighted to announce The International Journal of Palliative Nursing Awards 2012, one of the most prestigious events for nurses and allied health professionals working in the field of palliative care.

These awards, now in their seventh successive year, are organised by MA Healthcare, in association with the International Journal of Palliative Nursing and recognise the individual commitment and achievements of palliative nursing professionals.

Entries are invited from individuals, members of a team or you may nominate a colleague to enter one of the seven major categories.

The finalists of each category will be invited to an evening gala dinner and awards ceremony at a prestigious London venue on 29 March 2012.

Further information which includes the criteria and details of the categories are available on our website at http://www.ijpn.co.uk/awards.shtml where you can submit your applications online.

Closing date for entries is 16th December 2011.

Conquer Cancer Foundation Fellowship 2012 – APPLY NOW!

Mary Callaway at Open Society Foundation informs us of an interesting long-term fellowship opportunity:

Dear Colleagues

This may be an excellent opportunity for our palliative care oncologists to get additional training. Although it doesn’t mention palliative care per se, it doesn’t exclude it so it may be worth responding to.

If nothing else, applications from our colleagues will draw attention to palliative care for cancer patients. I urge you to forward this announcement to our palliative care oncologists working in oncology hospitals in your countries.

Many thanks, Mary

Long-term International Fellowship (LIFe)

The one or two year Long-term International Fellowship (LIFe) provides early-career oncologists from low and middle income countries the opportunity to advance their medical education by:

Observing a clinical oncology practice in an academic center
Participating in clinical training and research opportunities with their mentor
Attending the 2012 American Society of Clinical Oncology (ASCO) Annual Meeting

APPLY NOW: Full details and application form available at Conquer Cancer Foundation…

IASP Developing Countries Project

An Initiative for Improving Pain Education

Apply now for grant applications for the IASP Developing Countries Project: Initiative for Improving Pain Education.

These educational support grants address the need for essential and improved education about pain and its treatment in developing countries, for members of all health-care disciplines, taking into account specific local needs. Multiple grants are available, each for up to US$10,000.

Who is Eligible?

Members of IASP for at least one year.
The principal organizer must be based in a developing country – see the list of eligible countries

Application Deadline: February 15, 2012

Find complete award information, eligibility requirements, and application instructions on the IASP website:

www.iasp-pain.org/Grants/DCProject

14th World Congress on Pain, Milan 2012: Call for Abstracts!

The International Association for the Study of Pain (IASP) is now accepting poster abstracts to be considered for presentation at the 14th World Congress on Pain to be held at the Milan Convention Centre, August 27-31, 2012.

Individuals can access the Call for Abstracts and submission guidelines on the Congress website: www.iasp-pain.org/Milan

To be considered, each abstract must be:

sponsored by an IASP member,
presented in English – the official language of the Congress, and
submitted via our online submission system.

Deadline for submission: February 6, 2012

Financial Aid Available!

Financial aid is available to applicants from developing or currency-restricted countries and trainees from developed countries. IASP strongly encourage applicants to submit an abstract to the Congress.

Visit the website for full information, financial aid guidelines and to submit your online application: www.iasp-pain.org/Milan

Awarding-winning LIFE Before Death Series continues…

Here are the 3 films released in November & December:

For more information and to view the entire series, visit the Life Before Death website…

Organize Your Own “LIFE Before Death” Screening!

Mike Hill and Sue Collins of Moonshine Agencies, who produced the 50 LIFE Before Death short films, will be releasing a feature film (81 minutes) next year.

The World Premiere will be in Singapore on 2 February 2012.

Palliative care enthusiasts in most countries are organizing screening of the film for the public between that day and February 4th, which is World Cancer Day.

In Trivandrum, Pallium India plan to host a screening on February 3rd at the Museum Hall in the heart of Trivandrum.

We strongly urge you to take this opportunity for advocacy and possibly for fund-raising, by arranging a screening of the film in your locality.

Moonshine Agencies offer to provide you with the DVD, find full details about hosting a screening on their website…

To Tell or Not to Tell, That is the Question

It is a very frequent occurrence for any palliative service in India to come across patients who come with no clear idea of prognosis and at times, even of diagnosis. Often even dying patients are told,

.. we shall resume chemotherapy when you are stronger.

Palliative care teams then have the difficult task not only of disclosing the prognosis, but also of helping them to cope with the feeling of rejection.

But what would really be the better choice – a patient informed of imminent death, or someone blissfully unaware of it?

A report based on a study conducted in Sweden and published in “Journal of Clinical Oncology” – comprising 1091 patients, each in informed and uninformed groups – showed that

“providing information of imminent death to a patient with cancer at the end of life does not seem to increase pain or anxiety, but it does seem to be associated with improved care and to increase the likelihood of fulfilling the principles of a good death.”

Read the report here: Information of Imminent Death or Not: Does It Make a Difference?

Neuropathic Pain Redefined

The International Association for Study of Pain, the most authoritative organization in the filed of pain management, has revised the definition of Neuropathic pain. The new definition is:

Pain caused by a lesion or disease of the somatosensory system.

IASP offers the following footnote to the definition:

Neuropathic pain is a clinical description (and not a diagnosis) which requires a demonstrable lesion or a disease that satisfies established neurological diagnostic criteria.

The term lesion is commonly used when diagnostic investigations (e.g. imaging, neurophysiology, biopsies, lab tests) reveal an abnormality or when there was obvious trauma.

The term disease is commonly used when the underlying cause of the lesion is known (e.g. stroke, vasculitis, diabetes mellitus, genetic abnormality).

Somatosensory refers to information about the body per se including visceral organs, rather than information about the external world (e.g., vision, hearing, or olfaction).

The presence of symptoms or signs (e.g., touch-evoked pain) alone does not justify the use of the term neuropathic. Some disease entities, such as trigeminal neuralgia, are currently defined by their clinical presentation rather than by objective diagnostic testing.

Other diagnoses such as postherpetic neuralgia are normally based upon the history.

It is common when investigating neuropathic pain that diagnostic testing may yield inconclusive or even inconsistent data.

In such instances, clinical judgment is required to reduce the totality of findings in a patient into one putative diagnosis or concise group of diagnoses.

The previous definition by IASP (1994) had read:

Pain initiated or caused by a primary lesion, dysfunction or transitory perturbation of the peripheral or central nervous system.

The new definition takes away the word “dysfunction”.

In their editorial commentary, “A new definition of neuropathic pain” in Pain, 152 (2011) 2204-2205, Dr Troels S Jensen and colleagues explain why…

“Clinicians with neurological training and background have found it difficult to accept conditions in which symptoms and signs were not reflected in abnormal neuropathophysiology”

The new definition also specifies “somatosensory system” instead of the earlier more vague “nervous system”.
-

Vitamin Supplements Associated with Increased Risk for Death

Dr M Narendranathan, Gastroenterologist, writes:

Vitamin supplements associated with increased risk for death.

New findings from Iowa Women’s Health Study, published in October 2011, showed very few benefits if any of vitamin or mineral supplements. In fact, there was a suggestion of some risk associated with several of them.

The study followed more than 38,000 women, with an average age of 62, for up to 22 years. There were more than 15,000 deaths during the follow-up period. Vitamin B6, folic acid, iron, magnesium, and zinc were associated with about a 3%-6% increased risk for death, whereas copper was associated with an 18.0% increased risk for total mortality when compared with corresponding nonuse. In contrast, use of calcium was inversely related to risk for death

In her commentary on this study, Jo-Ann Manson, MD, said,

“This report serves as a cautionary tale about the potential risks related to dietary supplements and makes the point that more is not necessarily better. In the United States, about 50% of adults are currently taking 1 or more dietary supplements, and it is a $20-plus billion annual industry. But are consumers really getting value for the money spent?”

Arch Intern Med. 2011;171:1625-1633,1633-1634.

Nominations for IAHPC Board of Directors – DEADLINE EXTENDED

A message from Liliana De Lima at IAHPC:

The International Association for Hospice & Palliative Care (IAHPC) is proud to announce a public call for nominations to 6 seats in the IAHPC Board of Directors.

IAHPC members are invited to nominate health professionals actively working in hospice and palliative care with demonstrated interest in the development of international palliative care initiatives and issues.

Criteria for nominees

Nominees may be located in any country, have academic backgrounds and must fulfill the following criteria:

Have been active members of IAHPC for at least 3 (three) consecutive years at the time of nomination.

Have demonstrated work and commitment in palliative/hospice care in his/her field.

Currently holding or having held a position within a teaching hospital, university or palliative care organization.

Have demonstrated willingness to participate and work in the board activities including working groups and task forces.

Have demonstrated interest in international palliative and hospice care issues

Be able to communicate effectively in English.

Candidates must have access to the Internet and hold an active e-mail account.

Criteria for nominators

Be an active member of IAHPC at the time of nomination

Nomination rules

Nominators may nominate one candidate only.

Nominations have to be done by submitting a nomination form. To request a form contact Ms. Ana Restrepo at admin@iahpc.com

Please submit a copy of a current CV of the nominee

Deadline for nominations is ~~November 30, 2011~~ December 15, 2011

We invite members to participate in this important process by nominating a candidate. Individuals who are not members and wish to also participate, may join through our website by clicking here.

After the nomination, candidates may be contacted by the governance committee for additional information.

The term of the new members will begin on January 1, 2012 and will end December 31, 2014. The new directors will be elected by a vote of the current Directors and will be announced in December 2011.

We look forward to your participation in this process and to the nomination of candidates.

Governance Committee, IAHPC Board of Directors
(Original announcement)

November 2011 Issue of Sahayatra Malayalam Newsletter

We are happy to announce that the November 2011 issue of SAHAYATRA, our monthly Malayalam newsletter, is now available for download here…

Things are Not Very Different Between Kota Kinabalu and India!

The woman lay semiconscious with brain cancer.

The husband hovered over her – jobless now because he has to stay home to care for the wife.

The teenage daughter looked a bit lost – she works long hours in a restaurant, and really looked tired.

The crowded room with appliances, like a commode and a wheel chair, did not seem to fit in at all with any ordinary pattern of life – all seemed so familiar.

The care team – nurse Jess was in charge of this patient – did such precious work, ensuring her comfort, answering questions and reassuring the family.

The scene could so well have been from India – the ramshackle tin cottage, the ugliness of disease-induced poverty in sharp contrast with the scenic natural beauty, the care and love provided by the palliative care team – everything.

Pallium India was participating in a two day workshop in Kota Kinabalu, Malaysia – a combination of an introductory course for new doctors coming into the field, and refresher for the veterans.

It was organized by Palliative Care Association Kota Kinabalu under the leadership of Dr Ranjit Mathew Oommen and Dr Molly. It gave us the opportunity to see the Palliative Care Unit in the Government hospital headed by Dr Chitra Rajendran and to join the team on home visits led by Dr Joseph Ninan.

Congratulations on what you have achieved, Palliative Care Association!

The impact that your work makes was obvious in people’s faces, in the enthusiasm of the team, in the nature of the press reports and in what we heard of your advocacy efforts and of your fund-raising programs with participation of celebrities!

Submit Your Palliative Care Training Program

Dr E Divakaran, Director, Institute of Palliative Care, Thrissur proposes to present various palliative care training programs in the country at the forthcoming annual conference of Indian Association of Palliative Care at Kolkata on 10-12 February, 2012.

He requests information on all training programs in India.

Please oblige by submitting details using the online form – Deadline: 31 December 2011

SUBMIT NOW »

It will help your institution by attracting candidates and more importantly, it will help candidates seeking training.

PARTING SHOT

RN Diane Lebeau, from Canada, says in the 29th Life Before Death video, “End of LIfe Nursing”:

“The nurse is always carrying the plan.

For sure, the physician and the team look at the plan together, but the nurse carries it.

She brings it at the bedside,”

Indeed. That is the way it should be.

And that is something that we in India (and in many developing countries) need to think deeply about.

Is Palliative Care Nursing adequately developed? Or at least enough to keep pace with the doctors in Palliative Care?

Some time back, when we organized a refresher course for doctors, Ms Harmala Gupta questioned it, she asked:

“Why only for doctors?”

Why indeed? We continue to do it only for doctors too often.

Perhaps the real reason is that we are comfortable with doing it for doctors and do not have the capacity to do it adequately for nurses – despite all that Gilly Burn, the late Val Hunkin, Raelee Jensen and many others did in this country.

This is certainly food for thought. What all do we need to do to develop Palliative Care Nursing adequately?

November 2011

palliumindia — Sun, 20 Nov 2011 16:02:13 +0000

Imagine… someone has been diagnosed with a terminal illness. Most friends stop calling. Eventually one calls to say,

“I pray for you every day.”

In an article that appeared in The Guardian, the patient then asks,

“Every day? … Does your compassionate God not tell you that he’s heard your prayers before, to stop repeating yourself, get up off your knees, pick up the phone and talk to me instead?”

When the article appeared on Pallium India blog, Dr Nagesh Simha, President of Indian Association of Palliative Care, called it a “brilliant and thought-provoking piece”

We agree. Please read on…

“I dont know what to say”

When people find that a friend has been afflicted with a fatal disease, most keep away. It is not that they do not care; more often than not, it is just plain fear.

They do not know what to say if they visit. Therefore it is easier to keep away. They seldom have any idea of the pain and rejection that the patient will feel.

In The Guardian’s “What I’m really thinking” series, a terminally ill person speaks out:

What I’m really thinking: the terminally ill patient
‘I can count my real friends on the two fingers that I’d like to raise to the rest of them’

Since I was diagnosed as terminally ill this summer, friends have rapidly disappeared. I can count my real friends on the two fingers that I’d like to raise to the rest of them. It’s hard being friends with someone who’s dying, I know – I’ve been in that role myself – but it’s harder being the person saddened by the lame excuses for not making contact.

These all begin with, “I’m sorry I haven’t been in touch, but…” A text from a “friend” of many years told me she’s been “busy, busy, busy”; another has been so tired after gardening she hasn’t been able to email. Another doesn’t know what to say. Well, how about talking about work, kids, partners, politics, weather, what’s on TV – like we used to?

Then there’s, “But I pray for you every day.” Every day? Does your compassionate God not tell you that he’s heard your prayers before, to stop repeating yourself, get up off your knees, pick up the phone and talk to me instead?

I listen to the excuses and say I understand, but I don’t. The two people who have been friends don’t do anything different. They just carry on visiting and having a laugh; they keep the emails coming and share their news with me, even when I’m not well enough to reply. Do those who’ve made the excuses believe what they say, or will they, for my funeral, suddenly find the time to attend, weep and say how much they miss me?

All those friends who do not call (because they dont know what to say) perhaps could be helped by a bit of education – like reading this article.

We have for too long been a death–denying society that articles like this, or discussions on the matter, are such rare events!

Bruce Davis Training Centre Inaugurated

We have been so used to working in cramped quarters at Trivandrum Institute of Palliative Sciences (TIPS), that the availability of some space (albeit rented) for our Training Center is such a great luxury. Now there is some comfortable space to work in – when the volunteers come for their training programs, or when doctors, nurses and other professionals come for their six weeks’ courses. (We have six such courses in a year).

And we thought it befitting to name the center after Mr Bruce Davis. He funded the construction of the Institute of Palliative Medicine at Calicut, and is supporting us as well as several palliative care centers in India. He provided the funding for the “Bruce Davis Gold Medal” in Palliative Medicine for young doctors.

Bruce is a great human being who does not like to be in the lime light, few know him for his great contributions to Palliative Medicine in India, Hong Kong, UK and elsewhere. Sorry, Bruce, for putting up all this before the world to read, but we thought it important that contributions like yours are better known. They would so inspire others!

The Worshipful Mayor of Trivandrum, Ms K. Chandrika lit the traditional lamp at 5.30pm on Tuesday 01 November 2011, thus declaring the training center open. Dr Vijayakumar, Professor of Community Medicine at Trivandrum Medical College, Dr M. Balakrishnan from S.U.T Hospital, Sri Vijayakumran Nair, founder of Rajeswari Foundation, Dr George Varghese from Ebenezer Palliative Care Center and Justice Hariharan Nair were among the dignitaries who attended the event.

New Indian Express and The Hindu came out with reports on the function, read them below. The one in the New Indian Express showed a picture of “Cuckoo”, the boat that Bruce Davis and his wife had for 32 years. Sale of the boat had enabled funding the furnishing of the training Center.

A foreigner’s noble gesture to alleviate pain

New Indian Express, THIRUVANANTHAPURAM: What was once a boat that sailed in the seas of the West, has now become a training centre for doctors and nurses in palliative care, in the capital city. ‘Cuckoo’, the sailing boat that belonged to UK businessman Bruce Davis and his wife for over 32 years, was sold and the proceeds donated to city-based NGO Pallium India for setting up a training centre.

“Over the years, I have developed an enormous admiration for the palliative work done in Kerala and the interest and caring attitude shown by literally thousands of volunteers who are associated with this work,” said the limelight-shy Bruce Davis in an e-mail. This former businessman from Cornwall, in UK, had lost both his father and mother to cancer. Bruce Davis and his family members then set up a charitable trust for work related to pain relief for cancer patients.

“Our medical education is focused on imparting knowledge and skills, the head and the hands. What is often missing is the heart, or the attitude. We aim to integrate all three at the training centre,” said Dr M R Rajagopal, chairman of Pallium India.

Incidentally it was this trust that financed the Institute of Palliative Medicine in Kozhikode, after Bruce Davis came to know of the remarkable work being done there through Dr Robert Twycross from UK, who was in India to attend some workshops. Later Bruce Davis got involved with the hospitals at Vellore and Guwahati too.

“With palliative care attaining the form of a movement in the state, many health professionals, not just from other parts of the country but even from countries across the world, especially South-East Asia, used to visit us to learn and get trained. We never had even a proper workspace for them,” said Dr Rajagopal, who has named the centre after the philanthropist as Bruce Davis Training Centre.

A significant chunk of the training at the centre will be on communication, listening to the patient and the family, understanding their problems and not just the disease, and giving a person-centered care, attending to the psychological, social and spiritual problems of the patients.

Apart from this, the course covers the ethics of care, classification, assessment and management of pain, use of pain-killers, opioid pharmacology, opioid responsiveness, adverse effects, interventions in pain management and so on.

And the man who loved sailing, but sold the ‘Cuckoo’ for the cancer patients in the state wrote:”I have been honoured by working with the workers there. I will continue to do what I can as long as I am physically able.”

Pallium-training

The Hindu, THIRUVANANTHAPURAM: Pallium India, which has been spearheading the palliative care movement in Kerala, has opened the first formal Palliative Care Training Centre in the city.

The training centre has been named Bruce Davis Training Centre, in honour of Bruce Davis, head of a UK-based charity trust, who has been a benefactor of the palliative care movement in India for over a decade now.

The training centre was inaugurated by the Mayor, K. Chandrika, here on Tuesday.

“The Medical Council of India had taken a decision in December last to begin MD course in Palliative Medicine. While this is a positive development, it could be a while before this gets to the implementation stage. The new training centre is Pallium India’s effort towards encouraging professional education in palliative medicine, the chairman of Pallium India,” M. R. Rajagopal, said.

“We have decided to name our centre after Bruce Davis, out of our affection for this individual, who has been personally involved in the palliative care work of Pallium India and has remained a source of great inspiration and strength for us,” Dr. Rajagopal said.

Bruce Davies had set up his charitable trust in the UK in 1967 and was working in the area of cancer care. By the 1980s, the work done by the Trust had spread nationally into a most effective force for the relief of pain, both physical and mental, for cancer patients and others suffering from terminal illnesses.

Following the great improvement of cancer care in the UK, the Trust decided to use the expertise that they had gained in the home environment for the betterment of cancer care services in other countries where such services were almost nil.

The Bruce Davis’ Trust’s association with the palliative movement in Kerala began in the late 1990s when one of the Nurse Consultants of the Trust visited Kozhikode. Since then, the Trust has been supporting all activities related to the palliative movement in Kerala financially as well by way of rendering training to nurses and volunteers.

The new training centre set up by Pallium India is intended as a national-level centre to train doctors and nurses and to empower NGO initiatives in the area of palliative care because formal training facilities in palliative medicine is next to nothing in the entire country.

The six-weeks’ course which has been planned by Pallium India now will devote one-third of the training programme towards pain management while another one-third will deal with how psychological and social support should be extended to patients as well as addressing issues of rehabilitation.

“How should a doctor `listen’ to his patient? Learning to listen to a patient and to respond to him/her is something that a doctor working in this field should train himself for,” Dr. Rajagopal said.

Handling the medical complications of various illnesses, how to start a palliative care service are also dealt with in the programme. [..]

Cancer Aid Society Palliative Care Award 2011: Apply or Nominate Now!

India’s Cancer Aid Society (CAIDS) invites applications and nomination for the CAIDS Palliative Care Award 2011.

Closing Date: 12 noon (IST) 30th November 2011

CAIDS is an Indian NGO working Nationwide since 1987 on Palliative Care, Advocacy, Tobacco Control, Cancer and Non Communicable Diseases Prevention and Control.

The award winner will be presented with a plaque and a prize of Rs.100,000 in February 2012 at the 19th International Conference of the Indian Association of Palliative Care, Kolkata.

APPLY ONLINE HERE…

Applications and nominations are open to:

Doctors, Paramedical Staff and Social Workers
with demonstrative leadership in the field of Palliative Care for the Cancer Patients
from India, Bangladesh, Bhutan, Nepal, Pakistan, Afganistan and Sri Lanka

Application should be made online along with the references and verifiable evidence (through media and pictures) in order to identify the leadership of the applicants or nominee. Closing Date: 12 noon (IST) 30th November 2011

Awarding-winning LIFE Before Death Series continues…

The “Life Before Death” series of short movies continue to be released one every week.

They are not only very informative to the public; but also make powerful advocacy material for the palliative care community.

Here are the 7 films released in October and November:

For more information and to view the entire series, visit the Life Before Death website…

Showering Light into Darkness

Sometimes, when the day is bleak, and there seems to be only darkness, callousness and cruelty all around you, there comes a ray of sunshine.

Holy Angels’ School, Nanthancode, Trivandrum brought on such a bit of light into one family’s life – a follow up action on our blog post ‘What is it Like to be a 13-year-old with Cerebral Palsy in India?‘

Here’s a report on the Holy Angels’ action, from Indian Express:

Showering light into darkness
THIRUVANANTHAPURAM – Oct 25, 2011

Anyone who visits the 13-year-old spastic child Arun G Raj – confined to a leaky brick-walled room – would realise how blessed they are. So it was for the 15 students of the Holy Angels’ School, who saw him at Panathura on Monday.

The students and teachers of the Holy Angels’ School had decided to help this teenager, who cannot walk, stand or even sit without help, after reading an article titled ‘Care From a Mother’s Heart’ published in the City Express on September 16.

The students, motivated by their principal Sr Linis Noronha, started a campaign on the ‘Joy of Giving’ week, collecting little donations to help Arun in some way or the other. They interacted with the NGO Pallium India, to decide on the best way to help out Arun’s family.

Little acts of kindness finally heaped into a massive Rs 76,500, almost the amount that the building engineers said would be needed for renovating the little shack which belonged to Arun’s aunt, Suprabha.

A widow herself, Suprabha has been giving shelter to Arun and his mother Ajitha ever since Arun’s father died.

Not only will these students be able to replace the leaky roof, but the money can also light up the little house where Arun lives. Until now, the nights were jet black; for, they could not electrify the house with the leaky roof. Electricity might also mean that the life of little Arun can be made happier with music, because Arun shows a keen interest to the different sounds he hears.

The dismantling of the roof, concreting and electrification is estimated to cost Rs 80,000. Plastering and changing window shutters would need a little more money.

Ajitha, Suprabha and the volunteers of Pallium India hope that the light lit by the youngsters would be carried on by others in the society.

October 2011 Issue of Sahayatra Malayalam Newsletter

We are happy to announce that the October 2011 issue of SAHAYATRA, our monthly Malayalam newsletter, is now available for download here…

An Uneasy Peep Into Tomorrow

A report in The Guardian’s Datablog brings our attention to the latest statistics on the causes of death in England and Wales.

Behind the falling death rates, maybe we can see the cheering face of improved health care?

The data is so reassuring that the article states,

.. whatever we may worry about, this is one of the safest times to be alive, ever.

But really? The statistics also shows that deaths from Dementia and Alzheimer’s are rising. Steeply.

“Safe times” to be alive for many years with dementia?

The article defends the current state of things,

Essentially, other causes of death are going down – and people have to die of something!

Food for thought!

One Month Certificate Course in Palliative Care at MNJ, Hyderabad

An invitation from MNJ Institute of Oncology & Regional Cancer Centre, Hyderabad to the One Month Certificate Course in Palliative Care for Doctors, Nurses, Social Workers and Volunteers.

Course dates: 5th – 10th December 2011

This one month course will be conducted by MNJ Institute of Oncology in collaboration with INCTR and Pallium India.

This is an opportunity to learn managing chronic pain, difficult symptoms, difficult issues around end of life care and communication skill training.

Dr. Gillian Flyes, Ms. Ann Syme and Ms. Zahra Lalani from British Columbian Cancer Agency (BCCA) will be the External Faculty for the course.

Download course information and application form here…

For more information, contact R Vineela: mnj.palliative@gmail.com or call 09177238901

What is an Amusement Train Doing in a Hospital?

Here is a small train that whistles through the sprawling 16-acre cancer hospital, Cancer Centre Welfare Home & Research Institute (CCWHRI) at Thakurpukur, Kolkata.

CCWHRI was created by a great visionary, the late Dr Saroj Gupta, and is currently managed by his sons, Mr Anjan Gupta (an architect) and Dr Arnab Gupta (a surgical oncologist).

Many may consider this train, or the fountain in the children’s ward a luxury, but the message that they give to anyone who walks in to the hospital is,

“We care for you as a person”

People with cancer already have the disease and treatment (with all their psychosocial implications) to grapple with. Why must they also be in a grey, bleak environment?

Even if all hospitals do not have amusement trains and fountains, at least we can learn from them enough to think not only of disease and treatment but also of the windows and the trees?

Simply wheeling someone out in the evening to be among some greenery and flowers may do a lot of good to the human spirit!

Laughing at Death: A Great Lesson in Acceptance!

Here’s another story from The Guardian, the story of a father and son laughing over a stroke, then cancer and eventually death!

Jason Cook: My dad’s death was one big joke
Stand-up comedian Jason Cook always delved into his family life for inspiration, so when his father had a stroke he turned it into an award-winning show. Then, a year later, his dad died of cancer – but that didn’t mean the laughs had to stop

Dad was diagnosed with cancer in 2008, and one of the first things he said to my mum was “Well, that’s Jason’s next Edinburgh show sorted then.” He wasn’t far wrong. My 2007 Edinburgh Fringe comedy show, My Confessions, had documented his stroke and recovery and my 2008 show Joy talked about his cancer diagnosis and death. The truth is that my dad and I had written most of the show together. He was and is my inspiration.

My father, Tony Cook, was born in the Tyneside shipyard town of Hebburn, where we lived. He was a big, broad-shouldered fellow, with huge forearms and thick hands and the kindest eyes anyone has ever seen in a human being. They were eyes that always had a twinkle in them, so when you were talking to him you always thought that he might take you out to do something impish.

I followed Dad into the merchant navy at the age of 19. We became easy workmates and drinking buddies. Towards the end of his career, he became a consultant for the company and joined the same ship I was sailing on but was not a ranking officer, so I was technically senior to him on board. It never affected our closeness.

Read the full story on The Guardian website…

Visit Jason Cook’s website for more on his work…

Nominations for IAHPC Board of Directors

A message from Liliana De Lima at IAHPC:

The International Association for Hospice & Palliative Care (IAHPC) is proud to announce a public call for nominations to 6 seats in the IAHPC Board of Directors.

IAHPC members are invited to nominate health professionals actively working in hospice and palliative care with demonstrated interest in the development of international palliative care initiatives and issues.

Criteria for nominees

Nominees may be located in any country, have academic backgrounds and must fulfill the following criteria:

Have been active members of IAHPC for at least 3 (three) consecutive years at the time of nomination.

Have demonstrated work and commitment in palliative/hospice care in his/her field.

Currently holding or having held a position within a teaching hospital, university or palliative care organization.

Have demonstrated willingness to participate and work in the board activities including working groups and task forces.

Have demonstrated interest in international palliative and hospice care issues

Be able to communicate effectively in English.

Candidates must have access to the Internet and hold an active e-mail account.

Criteria for nominators

Be an active member of IAHPC at the time of nomination

Nomination rules

Nominators may nominate one candidate only.

Nominations have to be done by submitting a nomination form. To request a form contact Ms. Ana Restrepo at admin@iahpc.com

Please submit a copy of a current CV of the nominee

Deadline for nominations is November 30, 2011.

We invite members to participate in this important process by nominating a candidate. Individuals who are not members and wish to also participate, may join through our website by clicking here.

After the nomination, candidates may be contacted by the governance committee for additional information.

The term of the new members will begin on January 1, 2012 and will end December 31, 2014. The new directors will be elected by a vote of the current Directors and will be announced in December 2011.

We look forward to your participation in this process and to the nomination of candidates.

Governance Committee, IAHPC Board of Directors
(Original announcement)

URGENT: Pediatric Palliative Care Physician Needed in Delhi

Ms Poonam Bagai, chairman of Cankids, writes from Delhi calling for a pediatric palliative care physician for a project assignment of 3-6 months.

We have a place for them to stay, and language will not be a problem because the rest of the team is Hindi-speaking.

Cankids can pay Rs. 45,000 a month and if someone is willing to stay longer, that is welcome too.

Please see the attached information for details and please transmit this to anyone you think may be interested.

Children are in pain!

Download a PDF with full information…

Where is the Bystander?

Do you know what a bystander is?

It is an Indian phenomenon.

A relative who endlessly stands by anyone who is admitted to hospital. By definition, he/she is not expected to sit down, let alone lie down. Most hospitals will not permit more than one of the species to be with the patient, and that person will always be busy.

This dreadful title is another way of depersonalising a human being, and the medical system is hardly aware of the implied insult.

Nazeem Beegum, a Dubai-based journalist, posted the following on Facebook – an excerpt from a manuscript:

“Where is Sainaba’s bystander?”

Each time nurses used the word bystander, I wished them to address me as Sainaba’s daughter.

But they never cared for my feelings.

And why should they? They are seeing hundreds of bystanders each day.But why dont they at least think they too will be called as a bystander by someone, someday?

They repeatedly called me bystander before the doctor even though thay made friendship with me. I wondered why they want to punish me for nothing.

After all, how long I can be called in the presence of my mother as her daughter!

If I was in my usual self, I would have picked up a quarrel with them for not showing mercy towards all those bystanders who care their dear ones.

But as the situation was not meant for creating ugly situations in front of an ailing mother, I gulped down all my frustration without a complaint and rushed to them waiting for their next word like a lifeless rock.

I still dont understand why our hospitals call a person who cares their dear ones as bystander? Why dont they use the word carer instead of bystander?

Will someone answer, please? Nazeem is waiting.

Follow Nazeem on her blog, Twitter @nancynazeem & Facebook

REMINDER: IAPC 2012 Conference in Kolkata

NEW: View flyer or download pdf

From Dr. Nagesh Simha, President, Indian Association of Palliative Care:

I am delighted to inform you that the 19th International Conference of the IAPC will be held in Kolkata, 10-12 February 2012.

The theme is “Education, Training and Research in Palliative Care”.

Abstract submission deadline: 31 November 2011

Registration fees:

Doctors: Member, INR 2,000 / Non-member, INR 3,000

Post graduates: INR 1,500

Nurses & Volunteers: INR 1,000

Spouse/children: INR 1,500

Full details & registration forms are available at the IAPC Kolkata 2012 website…

What’s Common Between Palliative Care in Kerala and Malaysia?

Pallium India had the privilege of attending a planning meeting organized by the Division of Palliative Care of Malaysia’s Ministry of Health in Kuala Lumpur, 8-9 November 2011.

The division is headed by Dr Richard Lim, who, in the 1990s, had come as a young doctor to spend time with palliative care workers in Kerala.

The partnership between Government and Non-Government Organizations adopted by Kerala’s palliative care policy came up in discussion at the meeting.

With the blessings of Dr Azmi Shapie, the Health Ministry’s Director of Medical Development, the meeting decided to develop the framework for an action plan for Malaysia.

The meeting, as well as the progress in Malaysia would offer useful lessons for us in India, especially considering that even after a quarter of century of palliative care in India: 99% of our population has no access to it.

Malaysia is way ahead of India in access to palliative care, though the state of Kerala might be an exception.

Related: Malaysian MOH ‘Palliative Care Services Operational Policy‘ (pdf) & Oct 2010: Malaysia’s Pain Management Guidelines

PARTING SHOT

Would you mind very much if we end this newsletter with a quote that is not strictly palliative care material?

Well, why not? Is there any law which states that palliative care people must always talk palliative care?

We got the following gem from Dr Shakti Kumar Gupta of the National Initiative in Patient Safety (NIPS).

“When someone pays you a compliment, never interrupt. Wait till the person finishes, smile and say, “Tell me more”.

October 2011

palliumindia — Sat, 22 Oct 2011 14:16:05 +0000

Dear Friends,

When we celebrated (yes, celebrated, not just observed) World hospice and Palliative Care Day on the 8th of October at Trivandrum, it lead us to a decision for the future.

What we did this time was the sort of thing to do on that day in future. Fund-raising is needed, no doubt, but this is ESSENTIAL.

But wait a minute. More about this towards the end of this newsletter. First, see the announcement about Bruce Davis Medal. If you know any budding doctors who have completed their MBBS in India between 2006 and 2011, please convey this to them. There is not much time left!

Bruce Davis Gold Medal in Palliative Medicine 2011 – Apply now

Application Deadline: Tuesday, 1st November 2011

Mr Bruce Davis from Cornwall, UK, has been a supporter of palliative care efforts in India for a decade and a half. He has instituted a Gold Medal in Palliative Medicine for young doctors.

Dr E Divakaran, Chairman, Board of Examiners invites applications from doctors who appear(ed) for final M.B.B.S examination between 31.12.2006 and 31.12.2011 from any Medical College in India.

The detailed call for applications, application form, list of resources and the screening test are available here:

Download BDGM 2011 application form… (pdf)

PLEASE NOTE: Completed applications must reach Calicut before Tuesday, 1st November 2011

“Life Before Death” wins Accolade Award

Hearty Congratulations to Mike Hill, Sue and the team at Australia’s Moonshine Movies for winning an “Award of Merit” from the Accolade Competition for their LIFE Before Death series – even before the official release!

The Accolade is unique; it is an awards competition, not a traditional film festival. Awards go to those filmmakers, television producers, videographers and new media creators who produce fresh, standout productions. It is a showcase for cinematic gems and unique voices and recognises producers, established and emerging, who demonstrate exceptional achievement in craft and creativity.

The Pain and Palliative Care community all over the world is grateful to everyone at LIFE Before Death and Moonshine Movies for this great achievement in advocacy for the cause.

We’ve been posting each release from the 50-part LIFE Before Death series on our blog, the most recent being No.23 “Ripple Effect”. With more than half the series yet to be released the films have already been watched an amazing 31,000 times on YouTube!

If you’ve missed previous episodes, catch up on the LIFE Before Death website…

Silent and Thoughtful Act by the Indian Cancer Society

Ms Jyotsna Govil from Indian Cancer Society, Delhi, writes:

Indian Cancer Society has made a Cancer Awareness Film for the Deaf, using Indian Sign Language.

There is much excitement in the Deaf community here, as they finally understand what we take as simple information.

The film was released on 16 October at the Cancer Sahyog (Emotional Support) Seminar on Familial Cancers.

This Seminar was held at PHD Chamber of Commerce Auditorium between 9am-1.30pm. The entire proceedings were interpreted in ISL by qualified interpreters.

We hope to reach out to an hitherto unreached audience!

Find out how to sign “Cancer”, and many other words, in Indian Sign Language

Global Mapping of Palliative Care Provisions

“42% of the world’s countries have no palliative care services”

A quote from the Worldwide Palliative Care Alliance (WPCA) 2011 update of the global mapping of palliative care provision.

In 2006, Professor David Clark and Dr Michael Wright from the International Observatory on End of Life Care (IOELC) presented a report (pdf) that measured palliative care development in all countries of the world and classified them according to levels of palliative care development.

The IOELC 2006 report used a four-part typology:

No known hospice-palliative care activity (Group 1 Countries)
Capacity building activity (Group 2 Countries)
Localised hospice-palliative care provision (Group 3 Countries)
Countries where hospice-palliative care services were reaching a measure of integration with the mainstream healthcare system

The mapping exercise has been repeated in 2011 with some new criteria.

Within the typology, changes have been made to the criteria for level of palliative care development in groups 3 and 4 and these have been subdivided to produce two additional levels of categorisation: Groups 3a, 3b and Groups 4a, 4b.

India has been upgraded from Group 2 to Group 3b. This shows progress from “Isolated provision” to “Generalised provision” characterised by:

the development of palliative care activism in a number of locations with the growth of local support in those areas
multiple sources of funding
the availability of morphine
a number of hospice-palliative care services from a community of providers that are independent of the healthcare system
the provision of some training and education initiatives by the hospice organisations.

We should rejoice!

The growth is definite and more widespread, though we wish the change was more visible in terms of opioid consumption or some such indication of significant rise in the percentage of needy population accessing palliative care.

Links

WPCA Report: “Mapping levels of palliative care development: a global update 2011″ (pdf)
Indian Association of Palliative Care press release (pdf)
The Hindu: Study calls for more palliative care facilities

What Does the Word “CANCER” Mean to You?

It may mean many things including pain, but most of you would not immediately think of abandonment by the husband, of children being orphaned, or of living with not only the pain of cancer, but also the pain of rejection, feeling of worthlessness and total despair.

Amidst all the sadness, is it not heartening to see that someone cares?

The Assistant Sub-Inspector of Police, Mr Vijayraj, found Vasantha and brought her to us – giving us the privilege of doing what little we could to ease her suffering.

C. Maya reports in The Hindu on World Palliative Care Day:

For some respite from the pain

Vasantha is just 37. But as she lies on the hospital bed, floating in and out of consciousness, she looks a hundred years old.

Painkillers coursing through her system sustain her through the day, giving her some relief from the unrelenting pain of cancer. But the anguish she goes through, just looking at her two young girls by her bedside, cannot be dulled by a shot of morphine.

Vasantha’s physically challenged sister, her sole caretaker, is helpless every time Vasantha cries over the fate of her children. Vasantha was brought to the palliative care clinic run by Pallium India at SUT Hospital four days ago by Vijayaraj, a palliative care volunteer. He found her at her house in Keezhattoor, Kattakkada, doubled over and writhing in pain. With pain relief and care, she is at least able to sit up and talk now. “All we can do now is to assure her that her two girls – aged 15 and 13 years – will be in safe hands,” says Vijayaraj, an ASI at AR Camp, Nandavanam.

Vasantha had been diagnosed with breast cancer four years ago and she had undergone mastectomy (breast removal) at the Regional Cancer Centre. By the time she came back from the hospital, her husband had abandoned her for another woman. With only an ailing father and a physically challenged sister at home, her hopes died fast.

“She used to go for manual labour and take good care of us. She kept her pain to herself and sent the children away to a charity hostel,” Vasantha’s sister says. She refused treatment because there was no money or support.

“I was fed up. I stopped taking the medicines because they gave me severe stomach upsets and mouth ulcers. I knew I was dying but nothing had prepared me for the pain that will kill me a little day by day,” Vasantha says.

Her children, brought to visit her by a neighbour, looked bewildered. Seeing their mother at peace had given them the tiny hope that she will come home soon.

“It is a sad, sad story and one that we cannot rewrite, however much we would like to. But then, this is the story of every patient we see,” says Dr. Sithara, at Pallium India.

“Think of the others whom we may not see at all, dying painful deaths in some dark corner. How can we, as a civilised community, just stand aside and shun all responsibility? Palliative care is not just about helping one die painlessly but about giving a helping hand to the devastated family to stand up and continue living. A government cannot do that always, but each one of us can,” M.R. Rajagopal, the chairman of Pallium India, says.

UPDATE: We are sorry to report that Vasantha died two days after the report appeared in the newspaper. Our social workers are following up about her daughters.

Cancer Aid Society Palliative Care Award 2011: Apply or nominate now.

India’s Cancer Aid Society (CAIDS) invites applications and nomination for the CAIDS Palliative Care Award 2011.

Closing Date: 12 noon (IST) 30th November 2011

CAIDS is an Indian NGO working Nationwide since 1987 on Palliative Care, Advocacy, Tobacco Control, Cancer and Non Communicable Diseases Prevention and Control.

The award winner will be presented with a plaque and a prize of Rs.100,000 in February 2012 at the 19th International Conference of the Indian Association of Palliative Care, Kolkata.

APPLY ONLINE HERE…

Applications and nominations are open to:

Doctors, Paramedical Staff and Social Workers
with demonstrative leadership in the field of Palliative Care for the Cancer Patients
from India, Bangladesh, Bhutan, Nepal, Pakistan, Afganistan and Sri Lanka

With a Gesture, They Proclaimed, “We Are With You”!

Pallium India’s Trivandrum Institute of Palliative Sciences (TIPS), has, for several years, had the pleasure of working with Kerala State Institute of Health & Family Welfare at Thycaud, Trivandrum.

When they rang up to say they would bring some visitors from Rajasthan, it appeared to be another routine visit.

We welcomed this group of 20 doctors from State Institute of Health and Family Welfare, Jaipur, Rajasthan and talked to them briefly about palliative care and what is being done in Kerala. The team was led by the Director of the Institute, Prof Akhilesh Bhargava.

They had traveled the previous night, and had had a long day, yet there was some enthusiastic discussion and then we were ready to call it a day.

And then we found them huddled in a group and having some private conversation. They were delving into their own pockets and making a collection. In five minutes, a handsome donation was handed over to us.

Thank you, Dr Bhargava and team!

We know that you yourself are doing some very very important work in Rajasthan – and that you are not even funded by your Government!

All strength to your hands and we hope to work with you in future.

Notes From a Dragon Mom

A heartfelt piece published in the New York Times by a mother whose son will die by age three.

Emily and Ronan’s story shows, from an emotional standpoint, why palliative care is such a basic human need and right:

Notes From a Dragon Mom

Santa Fe, New Mexico.

MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him.

I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state. He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?

Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.

Parenting advice is, by its nature, future-directed. I know. I read all the parenting magazines. During my pregnancy, I devoured every parenting guide I could find. My husband and I thought about a lot of questions they raised: will breast-feeding enhance his brain function? Will music class improve his cognitive skills? Will the right preschool help him get into the right college? I made lists. I planned and plotted and hoped. Future, future, future.

Read more on our blog…

Death does not have to be painful

“Death, even when it seems inevitable, doesn’t have to be painful”.

This is the conclusion in The Peaceful Way Out, an article by Nazeem Beegum on palliative care. Published last month in Panorama Magazine, part of Dubai’s English-language newspaper The Gulf Today.

The author writes based on her experiences during her mother’s treatment for cancer, describes the message of palliative care and goes on even to related concepts that are not usually talked about like ‘Palliative Sedation’.

Thank you Nazeem! The more the people writing about pain management and palliative care, the less the pain in this world.

Advocacy is indeed the need of the day.

Read the full article on our blog or download a PDF.

September 2011 Issue of Sahayatra Malayalam Newsletter

We are happy to announce that the September 2011 issue of SAHAYATRA, our monthly Malayalam newsletter, is now available for download here…

World Palliative Care Day 2011 – “Snehasanthwana Samgamam”: Together in Love and Care

Pallium India, together with National and District government authorities, organized a get-together for patients in and around Trivandrum, Kerala, particularly those who are bed-bound round the year – a day full of fun, laughter and entertainment.

The event gave our patients and people from the community the opportunity to interact, empathise and join hands to further the cause of palliative care.

There will be a discussion with officials from the Kerala Social Security Mission on the different schemes and benefits available to patients.

Volunteer artistes will come together to sing to celebrate Voices for Hospices, followed by a magic show to entertain the audience. The patients along with their families will be then taken on an outing to the Museum.

Watch a special message from Kerala’s Chief Minister, Sri Oommen Chandy on our blog…

“a small note I made on what I witnessed on World Palliative Care Day,” from palliative care volunteer, Bindu Nair.

8th October was World Palliative Care Day. I happened to attend the programme arranged by Pallium India at Salvation Army Youth Center, Kowdiar, Trivandrum, Kerala.

When I got there, I saw the volunteers helping handicapped patients to climb down from the bus, with so much care.

I was so much moved and happy to see so many people who were ready to help the needy around them.

Their selfless gestures overwhelmed me. I am glad that in this world of corruption and selfishness, there are people who are generous enough to help others and understand the pain of their fellow beings. I thanked Almighty for making me a part of them.

The programme was as follows,

The chief Guest was Mr.Chandramauli, Airport Director of Trivandrum International Airport.

An interactive session with patients & their families followed.

A skit and songs by students of Mar Baselios Engineering College.

Food for all.

Songs by some of the patients also.

An outing to the Museum.

On the whole it was a very satisfying experience at the end of the day. People should have such experiences to make them humble & admit that GOD IS GREAT.

PARTING SHOT

The ultimate lesson in giving

Prakash came in with a donation for Pallium India on the occasion of his father-in-law’s death anniversary. His wife, Bindu, had wished it. And had died six days after her father.

Bindu had been under Pallium India’s care for quite some time. Life was not easy for her especially towards the end.

Yet, during those last few days, she had intimated her desire not only for this donation, but also for something most people would not do.

Bindu did not want her body cremated, but wanted it donated to a Medical College so that medical students could dissect it and learn anatomy. She wrote down her desire and intimated it to Prakash, who was determined to fulfill her wish.

But it was not easy. Traditions and rituals stood in the way. Many relatives found it hard to accept the situation.

Fortunately for Prakash, an uncle took a firm stand and declared, “Her desire WILL be fulfilled”.

Prakash went through the formalities and handed over her body to Alleppey Medical College.

Bindu, thank you for this lesson in giving. We bow to your memory.

Prakash is now an informal consultant on the formalities for anyone who wants to do the same thing for themselves or a loved one.

September 2011

palliumindia — Fri, 30 Sep 2011 08:07:43 +0000

We Waited a Long Time for This Day!

For Trivandrum Institute of Palliative Sciences (TIPS), the flagship of Pallium India, the 5th of September was a special and joyous day.

The Palliative Care Clinic at Government Medical College, Trivandrum, was formally inaugurated on that day by the Hon. Minister for Health, Mr Adoor Prakash.

Many dignitaries including the Director of Medical Education and the Deputy Director of Health Services attended. Even more remarkable was the fact that the hall was full despite the medical students being on a week’s holiday! With that sort of enthusiasm for the project, we are bound to succeed.

The clinic has been on a trial run for a few months now, but it is official now!

It is run by the department of Community Medicine (led by Dr Vijayakumar) with the support of Pallium India. A doctor, a nurse, a social worker and volunteers from Pallium India attend the clinic which functions three days a week – Monday, Wednesday and Friday. Three doctors from the department of Community Medicine have already completed palliative care training at TIPS and more of them plan to follow.

This is a large hospital where mostly poor people go to, and there is a vast sea of suffering there.

Thank you Jiv Daya Foundation, for your generous support to Pallium India for the project!

“Snehasanthwana Samgamam”: Coming Together in Love and Care

Pallium India, together with National and District government authorities, is organizing a get-together for patients in and around Trivandrum, Kerala, particularly those who are bed-bound round the year – a day full of fun, laughter and entertainment.

We hope that the event will give our patients and people from the community the opportunity to interact, empathise and join hands to further the cause of palliative care.

There will be a discussion with officials from the Kerala Social Security Mission on the different schemes and benefits available to patients.

PLEASE JOIN US!

Those who can, please join us on World Palliative Care Day for this uplifting event!

When? 9am–5pm Saturday 8th October 2011
Where? Salvation Army Youth Hall, Kuravankonam, Trivandrum – MAP

If you can’t make it to Trivandrum, there are plenty of events around the World, look for your nearest location here…

Union Health Minister Mentions Palliative Care at UN General Assembly

The Union Health and Family Welfare Minister Shri Ghulam Nabi Azad, while addressing the High-level Meeting of the United Nations General Assembly on the Prevention and Control of Non-Communicable Diseases which began on 19th September 2011 at New York, made a special mention of palliative care as one of the strategies for controlling Non-Communicable Diseases (NCDs).

He mentioned that by 2012, 100 district hospitals in the country would have palliative care facilities.

Shri Ghulam Nabi Azad informed that alarmed by the rising incidence of the non-communicable diseases and its impact on the health care delivery, a national summit was held in India subsequent to the Global Health Ministerial Conference on Healthy Lifestyles and Non-communicable Disease Control in Moscow in April 2011.

“Besides the Delhi Call for Action from the national meet, we now also have 10 key messages from the recently held WHO South-East Asia Regional meeting at Jaipur in India”, he added.

The Union Health Minister emphasized that Non Communicable Diseases are not only a health issue but also a development issue as they impact productivity and also impoverish the society due to high health expenditures. Therefore, the Government of India has launched a “National Programme for Prevention & Control of Cancer, Diabetes, Cardio Vascular Diseases (CVDs) and Stroke (NPCDCS)” and the “National Programme for Health Care of Elderly (NPHCE)”. This has been taken up for implementation as a pilot project covering 150 million population in 100 inaccessible and most backward districts during the current financial year (2011-2012) at a cost of 275 million USD.

The program includes several components such as: Establishment of Non-Communicable Diseases (NCD) clinics at 100 district hospitals and 700 Community Health Centers (CHCs) for diagnosis and management of Cardiovascular Diseases (CVD), Diabetes & Stroke and Cardiac Care Unit in district hospitals; ensuring availability of life saving drugs – wherein an additional 1,250 USD will be provided to each district hospital in 100 districts; For early detection of cancer common diagnostic services are being provided at these 100 district hospitals. Provision is also being made for basic surgery, chemotherapy and palliative care at these hospitals; For supporting Chemotherapy, drugs will be provided in these 100 district hospitals for 10,000 patients at the cost of 25 million USD; In addition, 65 centres are being strengthened as Tertiary Cancer Centres (TCCs) to provide comprehensive cancer care services at a cost of 1.5 million USD each.

Read the full press release here: Shri Azad Leads High Level Delegation to United Nations Assembly on Prevention And Control of Non-Communicable Diseases

Telemedicine, a New Endeavour with HP India

Hewlett Packard India, under its Corporate Social Responsibility Program (CSR) has taken a decision to join hands with Pallium India in supporting its continuing endeavour to bring palliative care to those in pain and despair.

HP’s objective is to support Pallium India with innovative technology solutions to multiply its ability to reach out to the community at large in providing palliative care. HP India and Pallium India have signed an memorandum of understanding (MOU) through which HP will be providing Information and information and communications technology (ICT) based solutions, static as well as mobile to maximize its capabilities by introducing ‘Virtual Health’ concepts which will be fully funded by HP India.

Virtual Health and Telemedicine facilities can bridge a lot of gaps and imbalances in doctor patient ratio in rural area.

Virtual health is all set to become a reality starting with EMR (Electronic medical records) which will effectively reduce paper work by digitizing medical records like lab reports, diagnostic images and reports, medication and inter department communication.

The mobile telemedicine unit will be of great service to the patients. The unit will have all the digital medical equipment necessary to bring quality health care to the patients door step.

What is more laudable is that HP’s health division is handing over the equipment free of cost to Pallium India, the ultimate result being the immeasurable relief to the helpless suffering patients who have no where else to turn to.

Health for Older People

When our team goes out on home visits, every single day we are confronted by the plight of the elderly in our society. Globalization and nuclear family system having destroyed the support system that existed in the last generation, the elderly are too often left with no one to attend to their health or their well being.

The problem of course is not specific to India, but holds true for most of low and middle income countries. Mr Diederik Lohman of Human Rights Watch writes to inform us about the call for action by Navanetham Pillay, UN high commissioner on human rights who specifically refers to the need for palliative care for older persons.

Governments Must Make Health Of Older People A Priority, Says Un Rights Chief – New York, Sep 16 2011

With the number of people aged over 60 expected to reach 2 billion by 2050, or more than a fifth of the total global population, discrimination against old persons should rank among the most pressing policy issues for governments and societies, the United Nations human rights chief said today.

“Regrettably, prejudice against and stigmatization of older persons [known as ageism] are consistently reported everywhere in the world,” High Commissioner for Human Rights Navi Pillay told the UN Human Rights Council’s panel on the right to health of older persons, citing discrimination based on age in areas as vital as social protection policies, employment laws, and access to public services.

“Its intimate link with the right to health has particular relevance. Health lies at the heart of all human rights issues when we age. Research shows that health tops older persons’ issues of concern. Problems such as lack of adequate diagnosis or treatment, lack of trained staff or home-based services, or difficulties to access reliable health information are often cited.”

She cited a report on ageing by Secretary-General Ban Ki-moon to the General Assembly highlighting the fact that age often defines whether someone is allowed access to medicines, treatment, devices or long-term care. Many older people say that their age alone is handled as a disease and that they are often dismissed without proper diagnosis.

Ms. Pillay underscored the lack of adequate services, facilities and care, or their prohibitive costs, with estimates showing that only one in five persons aged 60 or more has a pension. Without a pension, older persons may well be confronted with poverty, while stress about the affordability of health services leads to or is compounded by unattended chronic diseases, malnutrition and lower standards of living, she noted.

“A social protection system is crucial, and States are required to allocate sufficient resources and facilities to cope with these demands now and to prepare for the future. The unique requirements of older persons must be incorporated in national health systems, especially in low- and middle-income countries.”

She said tackling the lack of specialized services such as residential centres, home care programmes and geriatric services, age-friendly primary health care, and palliative care must be a priority.

“Adequate access to palliative care is essential to ensure that these people can live, and ultimately die, with dignity,” she declared.

What is it Like to be a 13-year-old with Cerebral Palsy in India?

And what is it like to be his single parent when the boy is unable to walk, stand or even sit up without support?

The single parent who can no longer earn a living because there is no one else to look after the boy?

Please take a minute to read an article from the New Indian Express of 16 September 2011:

Care from a mother’s heart

Could it be sheer coincidence that we came across a 13-year-old spastic child Arun G Raj at Panathura, near Kovalam, and perhaps the most personal book by Arun Shourie on his spastic child, the same day?

The answer eludes us, but seeing Arun and his absolutely devoted mother Ajitha leaves us with the same question Shourie asked – ‘Does He know a mother’s heart?’, the title of his book.

Confined to a brick-walled room, that is so dark that one has to squint to see the twisted body of a teenager on the floor, Arun looks up at the light streaming in through the open window. Then suddenly you realise that he was responding to a crow crying on the tree outside. The crow stops and he loses interest.

His lips move, but you don’t hear a thing.

Read the full article at Express Buzz…

To add to what Reema Narendran says in the article, the boy needed to see his doctor regularly to keep his convulsions under control and for the myriad ailments that he is subject to. He could have free consultations in the Government Hospital, but with his condition being what it is, it was impossible for them to handle the hours of waiting in the crowded hospital corridor that would be necessary.

A kind pediatrician offered to see him at her residence free of cost in the evenings, and that was such a relief for Arun’s mother; but then Government of Kerala banned private practice by doctors in Government service, and the pediatrician no longer wanted to risk being seen seeing patients at home.

Fortunately, at this time, Pallium India’s TIPS found him and started giving him home visits.

Now our doctor, usually the pediatrician in our team, visits him periodically. We provide him not only his diapers, but also all his medicines free of cost and a monthly food kit.

But, how many tens of thousands of children and families like him are denied any care in our country?

An Indian Book on Palliative Care

But, not just another book on Palliative Care!

Dr Dinesh Chandra Goswami, the palliative care pioneer from Guwahati Pain and Palliative Care Society, Assam, India, has published a book, “Palliative Cancer Care: Our perspective”.

And before anyone says to oneself, “Oh, yet another book on palliative care?”, let me add that this book is special.

It is special because it has such strong roots in India. It certainly draws on what the West has learnt and taught on palliative care, but has a solid foundation built on experiences on Indian soil.

Looking at it superficially, you will notice that the book is bilingual – with English as well as an Assamese version.

When you look deeper, you will also find an all-pervading air of spirituality. I am sure many would find the sections on Yoga and Self-Awareness interesting.

This is not a textbook on Palliative Care. It is a collection of essays from the author, translated into English by his wife Mandira Sarma.

Published by Lakshmi Prakashan, Mathura Nagar, Guwahati, 781 006, India. Contact Dr Goswami at: goswamidcg [at] gmail.com

- This news was also published in the IAHPC’s September newsletter

Share to Care News

Here in Trivandrum, Kerala, we have just finished celebrating Onam, the harvest festival in Kerala. It is a time of family reunions and celebration, with sumptuous feasts on banana leaves and gifts of new clothes to the near and dear.

Soon after Onam, we got a visitor, Dr S. Valsala Devi, a Professor of Pathology, one of the many who had signed up for our “Share to Care” program.

Every Onam, my three sons bring me gifts of new clothes. Too many! This time I told them, if you want to give me some gift for Onam, give it for “Share to Care”

And here is the money!

Thank you Dr Valsala Devi for this thoughtful gift!

“Share to Care” is the program that we launched three months ago, where well-wishers sign up to share something for the needy when they celebrate something like a birthday or a festival or when they observe a loved one’s death anniversary.

We already have more than 100 people who have signed up for “Share to Care”. Would you care to? It would take only 3 minutes of your time.

Please go to: http://palliumindia.org/SharetoCare

New Edition of the Palliative Care Formulary

Dr Michael Minton from UK writes to tell us about the new 4th edition of the Palliative Care Formulary (4e).

Over the last 13 years the Palliative Care Formulary has been the definitive source of reference for the drugs we use in palliative and hospice care, published in the UK and edited by Drs Robert Twycross and Andrew Wilcock.

They and the editorial team have just updated and expanded the formulary, the 4th edition will be available from the 1st October 2011. Press release at palliativedrugs.com, buy online at PalliativeBooks.com for a pre-publication 10% discount.

If Pallium India may add:

Even with the pre-publication discount, the price of £45/Rs3,300/$72 is a lot for resource-poor countries.

If any of our well-wishers would like to gift the book to us, it will be more than welcome!

We shall keep the first copy for the training center at Trivandrum and send any additional copies to other training centers in India that we are associated with.

EAPC Opioid Guidelines for Cancer Pain

The European Association of Palliative Care (EAPC) are updating their guidelines on opioids for cancer pain.

As part of this review they have undertaken 22 systematic reviews of topics relating to opioid treatment in cancer pain. These are published in the journal Palliative Medicine July 2011 vol. 25 no. 5389-390 (pubmed).

While they do highlight the limits of research in this field, they do provide the most up to date and comprehensive review of what we know about the use and side effects of opioids.

The EPCRC project to revise the European Association for Palliative Care (EAPC) guidelines on the use of opioids for cancer pain

In this special issue of Palliative Medicine, systematic reviews contributing to the development of the revised European Association for Palliative Care (EAPC) guidelines on opioid analgesics for the management of cancer pain are published. This brief comment tries to put this quite unique collection of coordinated articles in the context of the overall guidelines project and to help readers to make the best use of them.

The European Association for Palliative Care (EAPC) guidelines on opioid analgesics for the management of cancer pain were published in 1996 and 2001 and were seen as an evolution of the World Health Organization (WHO) recommendations, developing in detail the role of opioids in the analgesic ladder. The impact of WHO and EAPC guidelines on clinical practice and patient outcomes has never been demonstrated empirically, but it is likely that they had a profound influence.

Full text here… (subscription required)

Thanks to Dr Michael Minton for sending this news

District Level Palliative Care in Andhra Pradesh

In 2006, the Regional cancer center at MNJ Institute of Oncology (MNJIO), Hyderabad joined hands with International Network for Cancer Treatment and Research (INCTR) and Pallium India to start a palliative care training center.

We had recently reported to you the success of this center in starting a pediatric palliative care fellowship as well as in working with the Government to simplify narcotic regulations in the state and to sanction a full-fledged department of Palliative Medicine at MNJIO.

Now advocacy by MNJIO’s Palliative Care Training Center has had another success! The Government has plans to make palliative care available at District level.

Read the report in The Hindu: “Plans to launch palliative care programme in districts”

Global war on drugs denies morphine to patients

We recently blogged about a documentary, “Freedom from Pain”, on the need for pain relief created by a group of students at the University of British Columbia School of Journalism. The documentary was broadcast by Al Jazeera, watch it here…

The work, and with it the pain problem in the World, is receiving more international attention. Most recently, in Canada’s Vancouver Sun, examples from India, Uganda and Ukraine are quoted and special mention of the positive movement in Kerala:

Global war on drugs denies morphine to patients: UBC study

A study by University of B.C. journalism students says the global war on illicit drugs is preventing patients suffering terminal illnesses in some countries from having sufficient access to morphine to control their pain.

The year-long study done by the UBC Graduate School of Journalism involved teams travelling to India, Ukraine and Uganda to see how those countries manage pain.

The results of The Pain Project can be found at www.internationalreporting.org/pain.

The report was released in advance of a United Nations conference in New York this week on the global challenges of treating cancer and other diseases.

Prof. Peter Klein, UBC’s acting graduate-school director, said that unlike many global health problems, pain treatment is not about money or lack of drugs, as morphine costs pennies per dose and is easy to manufacture.

He said bureaucratic hurdles and the chilling effect of the war on drugs were the main obstacles to morphine access in some countries.

“The story of global morphine shortages is one of those issues that both the media and the medical community has overlooked,” said Klein.

He said he became interested in pursuing the story after talking with a member of Doctors Without Borders who’d found a lack of morphine in a number of countries he’d visited.

“For instance in India, which is the largest supplier of medical morphine in the world, it’s virtually unavailable in most parts of the country except for one state [Kerala],” said Klein.

Klein said some countries, such as India, had over-reacted to UN regulations regarding access to opiates — an unintended result of the war on drugs.

Uganda was chosen an example of a third-world success story on how the issue could be overcome, while Ukraine was a case study in the problems caused by too much bureaucracy in cancer care.

The website offers videos from each country showing how patients there struggle with pain.

One shows a former Ukrainian KGB officer dying of prostate cancer who sleeps with a gun under his pillow “in case the pain becomes unbearable” while another shows an Indian doctor frustrated with drug laws who mixes readily available analgesics to ease the pain of his cancer patients.

A third shows a Ugandan nurse who led a movement to reform that country’s drug laws around morphine distribution and palliative care.

Good News from Guatemala!

Here is a piece of good news from the Developing World. The palliative care pioneer from Guatemala, Eva Rossina Duarte, writes to say:

I’m happy to let you know that, on Sept 21st we will start our first Palliative Care Specialization Study for Physicians at University of San Carlos, the public university in Guatemala.

I’m in the academic commission that organized it, I’ll be one of the professors and also a student.

In this first cohort, 25 Faculty of Medicine Professors will be invited to participate in order to start a palliative care network in public “school hospitals”, and in future introduce palliative care into doctors’ Medical careers.

We’ll invite also physicians that are working in Palliative Care already to recognize their practice.

We wish Eva and her colleagues at Universidad de San Carlos de Guatemala the best for this important study!

LIFE Before Death Series continues…

The “Life Before Death” series of short movies continue to be released one every week. They are not only very informative to the public; but also make powerful advocacy material for the palliative care community. Here are the 5 films released in September:

#20: Finding a Balance

#19: Fight for the Right

#18: A Little Goes A Long Way

#17: Pain in China

#16: Chronic Pain

For more information and to view the entire series, visit the Life Before Death website…

The “D” Word

From the Widow’s Voice (“We write about widowhood as we live it. Together we examine the good, the bad, and the ugly parts of life as a widowed person.”) blog:

the “d” word

In preparation for my son’s first day of Kindergarten today, I attended an interview with his teacher yesterday. It mostly entailed questions of, “Can he tie his shoes?”, “Does he feel shy in new situations?” and “Can he wipe his own bottom?”

At the end of our little meeting, his teacher asked about his special interests. I listed off his favourite play things (Lego, cars, his bike), the things he likes to do with his friends (swim, play hide-n-seek, jump on a trampoline) and his favoured topics of conversation (monster trucks, chickens and death).

His teacher stared at me for a moment after the latter item. “Oh…,” she replied, “What does he say when he talks about death?”

“He often ponders over what it feels like or what you see when you die. Sometimes he wonders when he or I will die,” I told her in a tone that suggested this was common-place and not really worth a huge amount of detail.

She listened with a faint look of concern on her face. This look turned soft as she asked, “Do you think he would benefit from speaking to our school counsellor?”

I suppose with the fact that this, death, is such a common topic in our house it hadn’t occurred to me that this type of conversation might be cause for concern at his school. I thought for a moment about her suggestion. An avalanche of thoughts tumbled around in my brain, “Is it bad that he talks about death? But I want him to feel comfortable talking about his concerns! Are other parents going to be upset when their child quotes my son’s occasional morbid thinking? I can’t guarantee that he will even say anything to other children. Are his questions abnormal? This IS normal to him!”

Read the rest of this enlightening blog post at Widow’s Voice…

August 2011 Issue of Sahayatra Malayalam Newsletter

We are happy to announce that the August 2011 issue of SAHAYATRA, our monthly Malayalam newsletter, is now available for download here…

IAHPC Membership Recognition – Win an iPad!

If you are not a member of the International Association for Hospice and Palliative Care, please consider becoming one.

They have a graded membership fee structure which makes it affordable even for people from poorer countries. Traveling scholarships for training anywhere in the world form an important opportunity for members. In addition come many fringe benefits.

Please see the announcement about the IAHPC:

IAHPC Membership Recognition Contest

We are delighted to announce that the IAHPC have designated October as our Members’ Recognition Month in order to build awareness and understanding of the vital function that our members play in the advancement of our mission as well as to formally acknowledge their support.

IAHPC will be giving a prize in the following two categories…

1. Recognizing Loyalty

Goal: to maintain the loyalty of members by giving a prize among those individual and institution(s) who keep their membership active.

2. Increasing Membership

Goal: to increase the number of members by giving a prize to the current member who brings the highest number of new or renewed members.

Enter here: http://www.hospicecare.com/contest

New Partnership with Child Family Health International

We are glad to report that Pallium India has entered into a new alliance with Child Family Health International (CFHI) for a cultural immersion program.

CFHI was started by Ms Evaleen Jones when she was a young student. It has grown to a very successful organization, and Pallium India is proud to be associated with CFHI, thanks to the introduction by Dr Jerina Kapoor, founder of Pallium India-USA.

Recently, two representatives from CFHI, Mr Steve Schmidbauer and Ms Hema Pandey spent a few days with us in Trivandrum before rushing off on their numerous projects in various parts of India.

They have reported on their visit at the CFHI blog, here’s an excerpt:

A Day in the Life – Implementing Palliative Care in India

As we drove into some of the poorest communities in Southern India, Dr. Raj and his team, a nurse, a social worker, and a driver went about their routine. Patient files are reviewed as we travel in the van. The size of the patient files is notable. After Dr. Raj read the file a bit, he begins to tell us the context of the family we are about to see.

We get a succinct yet thorough description of the family composition and history. The level of detail is impressive and we even had a few questions about the family that Dr. Raj answered from the record. I asked him when he last saw the family and he said that this was his first visit to them.

There are three other teams conducting home visits and so the family has been seen by the other teams in the past. It is amazing to see the level of detail that is recorded from the home visit. From these notes, other services from nutrition, to physical therapy, to social work are provided –all driven initially from the teams’ weekly or fortnightly visits.

Read the full report here…

Thank you, Steve and Hema!

Pallipedia and Pallium India

Pallipedia is an initiative of the International Association for Hospice and Palliative Care (IAHPC) – a palliative care “dictionary” edited by IAHPC’s chairman Dr Roberto Wenk and its executive director Ms Liliana DeLima.

For the last few months, Pallium India has been working with IAHPC, contributing as many as 15 words a week.

Read more at IBN Live “Pallium India emerges a major contributor” and in the September 2011 IAHPC news.

Would you like to contribute?

Please help us in our effort to give clarity to phrases and concepts, please write to us…

Rahmath Lives On in Memories and More!

Sunshine Mugrabi, from California, visited Pallium India’s Trivandrum Institute of Palliative Sciences (TIPS) in early 2011 where she met a patient who touched her heart. Her name was Rahmath and suffered from an advanced incurable illness.

Sadly, Rahmath died recently at TIPS. Rahmath was a humble person, poorest of the poor in material wealth, yet when she died, obituaries came in from many parts of the world! (see the comments here)

Earlier this month Sunshine just gave a talk at the San Francisco End of Life Coalition. As a follow up she was interviewed by the SevenPonds blog, where Sunshine talked about Rahmath. Here are some quotes:

“The thing that was so amazing about her was that she was always smiling. I can’t think of her face without thinking of her smile and her beautiful shining eyes.”

“She was calm, even though it seemed as if she had more hardships that any person should have. She had had a very, very challenging life. And somehow she took it in this spirit.”

“I feel like her smile is with me for the rest of my life. I was incredibly sad, but it was also bittersweet.”

“Death is the most profound experience you’re going to have, besides birth.”

Please read the full interview at SevenPonds:

A Legacy of Compassion: How my time spent with those dying in India affected me

Parting shot

Rahmath’s story does not end there! Sunitha, her daughter, called us the other day.

She says she wants to do something for her mother’s memory. Something that will help others. She has nothing to give; so she wants to pledge her eyes and her organs on her death. She seeks our help to get this done!

Do you know this feeling, when one feels so very small and humbled?

Truly, words fail!

August 2011

palliumindia — Mon, 29 Aug 2011 12:52:06 +0000

Heartening Action by Government of India

Our July newsletter had started with a call to action regarding Non-Communicable Diseases (NCDs). We had attached Pallium India’s letter to the Ministry of Health and requested you all to write to your respective Governments with similar “asks”.

In preparation for next month’s UN Summit on NCDs, the Indian Government’s Ministry of Health & Family Welfare and WHO India organized a 2-day National Summit on Noncommunicable Diseases, August 23-24, in New Delhi (press release). More than 200 delegates from various fields related to NCDs attended the meeting (programme).

During the inaugural function Mr RK Srivastava, Director General of Health Services, mentioned palliative care as one of the target areas of his department.

Minister for Health & Family Welfare, Mr Ghulam Nabi Azad, announced his ministry’s plans to launch home visit program for bed-bound patients in 100 districts in the country.

Our collective action is bearing fruit!

Good News About Our Efforts at the UN NCD Summit

Thank you for the support!

Following Pallium India’s efforts to boost Palliative Care Advocacy at the United Nations High-level Meeting on noncommunicable disease prevention and control in September, Mr. Acquino Vimal, First Secretary, Permanent Mission of India to the UN emails us to reassure us that they:

… were able to put 7 references to palliative care in the document. Now let us see how the EU and other developed countries view our position and what actually gets into the final document.

Those who have not written about it yet, please do it now!

Attached please find the letters – please feel free to download and use the attachments.

Letter to Ambassdor HS Puri (.pdf)
Final letter for PC Colleagues (.docx)

Health is Wealth?

“The poor man’s lack of health is industry’s wealth!”

Mr Suresh thaliyaril, a palliative care volunteer and organizer from D.Nip Care in Delhi wrote to Pallium India to ask,

A patient is getting Letrozole 2.5, the cost of 30 tablets:

“Letroz 2.5″ from Sun Pharmaceuticals, more than Rs.800

“Letrozole 2.5″ from Cipla: around Rs. 150

Is there any difference in the quality of these tablets? Which is better?

The patient needs the tablets on a long term basis. Kindly advise.

We unhesitatingly advised Mr Suresh Thaliyaril to go for the cheaper brand, which too is from a reputed company. A difference of more than 500%!

Our search for a possible reason for this disparity did not lead us to an answer, but took us to some other interesting news reports:

“Illegal promotion of Letrozole in India” – from 2003 alleging that the drug which was approved only for cancer was being illegally marketed for promoting fertility among Indian women (letter written by the editor of MIMS India)
“Sun Pharma’s letrozole under DTAB lens” – A report from DNA (Daily News & Analysis) which says that the then Drugs Controller General of India in 2007 authorised sale of Letrozole by Sun Pharmaceuticals for infertility and that Central Government’s Drugs Technical Advisory Board (which is investigating drugs which are banned globally but permitted for sale in India) will go into this too.
A price list from Medline India which shows that there is yet another brand, Femara, which costs Rs. 5,445 for 30 tablets – 36 times more than Cipla!

Mr Suresh Thaliyaril, we salute your humanity which made you go into the cost of the drug and its impact on the patient and family. You have a lesson to teach the medical fraternity!

LIFE Before Death Series continues…

For more information and to view the entire series, visit the Life Before Death website…

The Brain Drain

Writing in The Australian newspaper, Linda Kristjanson, Vice Chancellor of Australia’s New Swinburne University, Professor of Palliative Care Nursing and researcher, quotes from US President Barack Obama’s State of the Union address to the US Congress:

“Why do we train international students in our education system to advanced degree level, and then send them home to compete against us?

We should encourage them to stay in the US [..] to run research labs and build new businesses”

Read the full opinion piece: “Why overseas postgrads should be encouraged to stay”

That raises an important question that we in India should ask ourselves:

Why do we in India – at an enormous expense that should have gone in to welfare of our own suffering people – train doctors, nurses, engineers and other professionals so that Western countries are given a work force? Ultimately, at our poor country’s cost.

At least for those who are willing to return to our country and serve our people, does our system encourage them by providing opportunities? Or do we discourage them with our red tape and unfriendly bureaucracy?

Another Freedom Struggle!

Weep for the anguish of cigarette manufacturers who are being deprived of their freedom to kill others with their product.

The tobacco industry is spreading its wings and reaching out to more young lives that they want to destroy. But, this time the US Government is standing in their way by requiring “larger, more prominent cigarette health warnings on all cigarette packaging and advertisements”.

The warnings must be printed on the entire top half of the packaging, on back and front sides. Tobacco firms argue the plan violates their constitutional right to free speech and are now suing the US Food and Drug Administration over mandatory graphic warnings.

Important Step Forward in Andhra Pradesh

In 2006, the International Network for Cancer Treatment and Research (INCTR), American Cancer Society, Pallium India and MNJ Institute of Oncology (MNJIO) in Hyderabad joined hands to create a Palliative Care Training Institute at MNJIO.

The Institute made remarkable progress including amendment of the narcotic regulations of the state of Andhra Pradesh and starting of a Pediatric Palliative Care Fellowship course.

And, as one more giant step forward, they have now been successful in working with the Government of Andhra Pradesh which created a full-fledged Department of Palliative Medicine at MNJIO.

This is the sort of thing that we all have always wanted – integration of Palliative Care into the Government’s health care system.

Congratulations, MNJ team and partners!

One Month Certificate Course in Palliative Care MNJIO, Hyderabad

The Department of Palliative Medicine at MNJ Institute of Oncology & Regional Cancer Centre (MNJIO&RCC) invites applications for the One Month Certificate Course in Palliative Care for Doctors, Nurses and Social Workers.

Course Dates: September 5 – October 1, 2011

This one month course will be conducted by MNJ Institute of Oncology in collaboration with INCTR and Pallium India.

Download course information and application form here…

For more information, contact R Vineela: mnj.palliative@gmail.com or call 09177238901

Kenya’s National Cancer Control Strategy & Palliative Care

Dr Zipporah Ali from Kenya writes to share with us Kenya’s National Cancer Control Strategy (NCCS), which has a clear plan for palliative care.

Kenya is the 11th country to agree an NCCS with inclusion of palliative care and pain treatment. The palliative care section of Kenya’s NCCS document (pdf, pg19) reads:

2.6.4 Palliative care and pain relief

Palliative care should be provided from the time of diagnosis of the life limiting illness. Effective palliative care services should be integrated into the existing healthcare system at all levels of care including home based care.

These should be adapted to the specific cultural, social and economic setting. Palliative care should be strategically linked to cancer prevention, early detection and treatment services.

Strategy

Enhancing palliative care including pain relief

Objective

To improve quality of life of cancer patients and their families.

Interventions

Integrate palliative care services into the national health services.

Advocate for legislation and policies that support palliative care.

Develop and implement national palliative care guidelines.

Develop curricula and training materials for palliative care.

Develop an essential palliative care drug list and integrate it into the national essential drug list.

Build capacity for the health care providers and care givers on palliative care.

Conduct awareness campaigns on palliative care targeting policy makers, public, media, health care personnel and regulators.

Strengthen community and home-based palliative care services including establishment of nutritional support services for cancer patients.

Establish social support services for cancer patients and provide palliative care services for groups with special needs, children and elderly.

Develop networks, partnerships and collaboration with local and international partners.

Congratulations Zippy and all involved! This holds promise not only for the suffering in Kenya, but encouraging for all in developing countries.

WHO Calls for Targeted Research on the Pharmacological Treatment of Persisting Pain in Children with Medical Illnesses

It is gratifying to note, from the latest World Health Organization’s Access and Control newsletter, that persistent pain in children is receiving international attention.

One of the most painful sights in many hospitals is that of children with cancer, HIV, burns or other accidents – all going through intolerable and needless pain.

WHO’s Research Agenda for the Treatment of Pain in Children

The World Health Organization aims to revise and publish an updated version of the 1998 guidelines Cancer Pain Relief and Palliative Care in Children (pdf) with an addition of other medical conditions with persisting pain: later this year, the WHO Guidelines on the Pharmacological Treatment of Persisting Pain in Children with Medical Illnesses will be published.

A part of this guideline entails WHO’s research agenda, which highlights critical research topics of paediatric pain treatment. The research agenda was recently published. The article calls on researchers to focus their studies on one of the proposed topics.

Download: WHO Calls for Targeted Research on the Pharmacological Treatment of Persisting Pain in Children with Medical Illnesses (pdf)

Research areas that need critical attention are: clinical studies on paracetamol, NSAIDs and opioid analgesics; clinical studies on adjuvant medicines (antidepressants, gabapentin, and ketamine) for neuropathic pain; safety and dosing of non-opioid and opioid analgesics in different age groups as well as dose conversion of opioids; and pain assessment tools for children.

In addition to the pharmacological research that is proposed in this WHO publication, we hope there will also be enough social research about getting the available science to reach the needy.

Is that not the major cause of unalleviated pain in the world – the failure of available knowledge to reach the needy?

End It All? Or Live With It, Meaningfully?

Only 10% of us will die a sudden death. At the end of life, 90% of us will go through a prolonged illness before the end comes.

Frightening? Two people who are not afraid to think about it are arguing the point out in the Minneapolis Star Tribune: “Suicide is not the answer to Lou Gehrig’s disease”.

The author, Bruce Kramer, quotes an article, “How to die with grace”, by Dudley Clendinen who has Amyotrophic Lateral Sclerosis (Lou Gehrig‘s disease). Clendinen has decided to kill himself before he loses the ability to do the deed. Not wanting to be:

a conscious but motionless, mute, withered, incontinent mummy of my former self.

Kramer then quotes David Brooks who wrote in the New York Times about Clendinen’s article bringing in the issue of cost of treatment – with the arrogance of a TAB (Temporarily able-bodied) person, as Kramer puts it. Brooks brings the argument down from the level of meaning of life, to the sordid question of money.

To Brooks, Kramer says:

Managing Lou (the disease) is expensive, but not managing it is immoral.

Bruce Kramer does not subscribe to either argument, he does not plan to end it all the Clendenin way, he means to find meaning in his life and in the course of disease and concludes:

Aging is the ultimate chronic disease. Each of us will have to learn its meaningful management. None of us has special knowledge

Young Effort, But What Great Effort!

Farhin, 10, and Farhan, 8, are primary school students in Sharjah, UAE. After they and their father, Dr Shafi, heard about the difficulties faced by Kunnamkulam Pain and Palliative Care Society (Thrissur District, Kerala) Farhin and Farhan decided to do something about it.

With their own brand of fund-raising – they could draw and paint – the boys sold their drawings and paintings to their school mates and raised an amazing Rs 300,000!

Farhin and Farhan, as I write this, I am proud to be a citizen in the same country as you. You have taught us grown-ups a lesson. And in the process, perhaps you have learnt a lesson too; how much pleasure can be derived from doing some good to less fortunate neighbours.

May that spark of greatness of spirit live in you all your lives.

Let Us Hope None of Us is Part of Any Malpractice

There is a worrying report by Al Jazeera’s Fault Lines series from Madhya Pradesh about unethical practices pertaining to drug trials by international pharma companies:

“Outsourced: Clinical trials overseas”: As US pharmaceutical companies move their operations abroad, India has become a testing ground for trial medicines. – Al Jazeera’s Fault Lines

The Palliative Care community in India has always stood for ethical medical practices. Let us hope that we become in no way any part of any exploitation of patients in the name of research.

But wait a minute. We are by no means condemning research in India – whether it is national or international. Pallium India does do its share of need-based research – mostly to do with social research on issues pertaining to palliative care.

As Jawaharlal Nehru said, because we are a poor country, we cannot afford not to do research. But we certainly condemn any exploitation of the poor and the illiterate in the name of research.

Text Messages for Improved Health Care: A Lesson in Advocacy?

BBC news highlights a study published in the Lancet showing that text messages sent to health care workers in Kenya improved adherence to malaria treatment regime from around 20% to 50%:

Health workers in the study were sent text messages twice a day, five days a week, for six months.

An example of the sort of sent was: “advise mother to finish all AL [artemether-lumefantrine] doses over three days even if the child feels better after two doses”.

At the beginning of the study, 20.5% of children were correctly managed, this increased to 49.6% after the six month study.

Is there a lesson here for the palliative care community in India which should recognize that poor advocacy has been its biggest weakness over the last decade and a half?

PARTING SHOT

One More of Us Passed Away

Rahmath died a couple of days back at the age of 53.

It is a good rule not to have favorites among patients. We should give them all our unconditional love and unconditional respect, whether they are smiling or crying, perpetually thankful or perpetually complaining, cheerful or grumpy.

But it was difficult not to give a special place to Rahmath in our hearts. Few people lived with so many adversities in life – very difficult family situation, poverty, and a cruel, unrelenting autoimmune disease (systemic sclerosis) which gave her unbearable pain in all four limbs and elsewhere.

She smiled through it all. She had little to give, but gave plenty – in smiles, expressions of gratitude and always, always, prayers. She would travel 225 kilometers each way in a five hour train ride for every consultation, and we could expect her never-failing call the next morning to reassure us that she got back home by midnight, yes, thank you, she is pain-free now. And then she would name every single member of our team whom she met the previous day and convey her thanks. And she would repeat, she would pray for every one of us, “That is the only thing I can do for you”.

She taught us fortitude. She smiled through suffering that few of us could possibly have lived through. Yet, when the suffering would become overbearing, her eyes would fill, as when she described how her two grandchildren who lived in an orphanage begged to be brought home to their mother during the summer vacation. Eventually, with some slight help from us, she and her daughter-in- law overcame the unbelievable barriers and it was such a joyous occasion for her when the children could be re-united with their mother.

Our guest from USA, Mrs Sunshine Mugrabi wrote about her:

Her smile is a wide as her face, accompanied by a bright twinkle in her bright blue-gray eyes. Her cracked teeth are spaced far apart. When she smiles it looks as if her entire being is infused by some wellspring of private joy. Pain cannot touch it, and in this, she touches everyone around her.”

During the last few days of her life, her suffering became intense. Dr Hyder Ali, Dr Susan Jaya Koshy and the rest of the team at Anwar Palliative Care Unit at Aluva took good care of her. But on the final day of her life, she insisted on coming back to us in Trivandrum. She traveled those 225 kilometers again in an ambulance, breathless, blue in all four limbs, and with a pain score of 10 out of 10. We feel so privileged to feel that we could give her some pain relief and peace during those last few hours.

Goodbye Rahmath. You gave us a lot and taught us a lot. Rest in peace.

July 2011

palliumindia — Sun, 31 Jul 2011 22:41:06 +0000

Dear Friends,

A Special Call to Action – Send a letter to highlight pain management for the United Nations NCD Summit Outcomes Document.

This September 19-20, Heads of State are meeting together at the United Nations (UN) Headquarters in New York City to discuss ways to prevent and control non-communicable diseases (NCDs). This meeting is a landmark event within global health and development.

This week, countries’ Permanent UN Mission Offices, working alongside Ministries of Health and External Affairs, are in the final stage of negotiation for the UN NCD Summit Outcomes Document. The summit outcomes document will provide a strategic framework for countries and global donors to follow when allocating resources to address NCDs. Pallium India supports the overall NCD Alliance efforts and we are working with the Indian UN Permanent Mission office to ensure that the pain and palliative care message is made strongly and clearly. We simply can’t afford for pain management and palliative care to be watered-down or worse, not mentioned specifically in the final document.

Pallium India sent the attached letter with detailed palliative care language for the UN NCD Summit document.

We request you to download the letter we sent, freely use the text from the letter, personalize it, and then email and fax the letter to the individual country’s UN Mission Office and ministry of health. If you are agreeable, please keep the 4 “asks” intact (from the letter) so that we’re all asking for the same thing. If possible, also email/fax the attached pdf that provides our Priority Pain and Palliative Care Language for the UN Summit. I hope you will be able to catalyse this with as many countries as possible.

Pallium India-USA Wins an Award!

We had reported to you about the Sevathon on 17 July. Now we are glad to bring to you this piece of good news.

At a post–Sevathon function at the India Community Center, Pallium India-USA won the award for the best Newbie organization that made the biggest impact.

Congratulations, Dr Jerina Kapoor and team! Well done!

Share to Care: Judith & John Smith’s 40th Wedding Anniversary

Judith and John Smith will be celebrating their 40th wedding anniversary next month; guess who get the gifts? They have written to their friends to help them celebrate the happy event by donating to Pallium India!

Judith and John’s pledge to Share to Care is enhanced by teaming up with the UK’s Shoe Zone Trust so that Gift Aid can be applied to their friends’ donations. You can read Judith’s letter below.

What a kind and marvelous thought, Judith and John. We are so grateful to you and your friends! THANK YOU!

Judith and John Smith’s Ruby Wedding Celebrations

I am a nurse specialist in palliative care currently working in education in a hospice in Leicestershire. My association with palliative care in Kerala started in 2004, when I spent 5 months at the Institute of Palliative Medicine in Calicut.

My main role was teaching the nurses on the six week Palliative Care Introductory Course. I fell in love with India and have returned three times to teach and get to know this wonderful place and the lovely people in Kerala.

The need for palliative care education is great as there is so much suffering which needs alleviating. Millions of patients live and die in great agony that could easily be prevented. Pain relief from morphine is not always easy to access and many people are still dying in pain in India. The professionals caring for dying patients are so keen to learn and their enthusiasm, dedication and capacity to improve care is really impressive.

The charity Pallium India works out of Trivandrum and it was here that I spent three weeks on my last trip to India, where I was again teaching nurses on the Introduction to Palliative Care course.

£18.74 will pay for a patient’s palliative care needs for ten days so as you can see a little goes an awfully long way!

For this reason, John and I have asked our family and friends who are coming to help us celebrate our 40 years of marriage in August to donate to Pallium India rather than give us any gifts.

The best gift we can get is to see some improvement in the care given to those suffering in their last days by the dedicated staff in Trivandrum.

Congratulations, Kavya

We congratulate Ms Kavya G Nath from Kottayam district in Kerala for her distinguished success in her Secondary School Leaving Certificate (SSLC) examination with 98% marks. Kavya wrote to Pallium India,

My father’s death five years had destroyed my family in every sense. I cannot describe the comfort that we got from the support and love that you had extended to my family. I cannot thank you enough.

Kavya wants to become a doctor. She will now have two years of “plus two” before she can attend an entrance examination to secure a seat for her medical studies.

And friends, we shall together support her in her choice of profession, if that is what she still wants to do at the end of these two years. Pallium India’s program is to continue support for education till the students’ studies have come to a natural conclusion and the person has started to earn.

At the “Share to Care” function on the 20th of June at Trivandrum, Kavya received a memento, a merit certificate and a cash award.

Congratulations, Kavya! Pallium India is privileged to have the opportunity to walk with your family.

Graseby Syringe Driver Exchange Programme

Australia’s phase-out of Graseby syringe drivers, with the introduction of alternatives, will mean that a significant number of these syringe drivers will have no use within the country.

A new initiative by the Asia Pacific Hospice Network (APHN) and Palliative Care Australia (PCA) aims to redistribute these useful devices to palliative care services in the Asia/Asia Pacific region.

Download application form here…

If your palliative care institution or service is an APHN Organisational Member, then you are eligible to apply. Successful applicants will be connected to a donor service in Australia by PCA.

Little Drops of Water Make the Mighty Ocean

It does not matter whether you approach this proverb as a physical fact or as a philosophical statement. Alan and Val Phillips have given us a visible demonstration of the principle.

Recently, the Reserve Bank of India decided to withdraw small denomination coins of 25 paise or less. One could take the coins to the bank and encash them before a certain deadline, but friends, most of us would not bother, right?

Alan and Val did something different. They had containers placed in many places where people were asked to drop their small denomination coins. Recently, they brought all the coins to us – quite a sackful!

We took it to the bank and got more than Rs1,300. That is not a small amount for us. It takes care of the palliative care expenses of a patient for about 10 days!

Alan reminds us that the members of the Rotary Club (Suburban) of Trivandrum and the foreigners living in and around Kovalam helped. Thank you all, dear friends.

Val and Alan have given us a lesson on the need to be innovative and, above all, shown that they care. THANK YOU!

If Val and Alan have inspired you, don’t forget to pledge to our “Share to Care” programme…

APHC at Penang

The Asia Pacific Hospice and Palliative Care Network (APHN) had its biennial conference at Penang from 14-17 July 2011 in partnership with Malaysian Hospice Council.

Everyone was all praise for the excellent organization under the leadership of Dato Dr D Devaraj. The theme of the conference was “Palliative Care in Mainstream Medicine”.

While palliative care is very well-developed in some countries in the region, it is virtually non-existent in many countries of the region and we hope this conference and the continued work of APHN will help to improve the situation.

APHN will continue to work under the leadership of its chairman Dr Cynthia Goh, the honorary secretary Dr Ednin Hamzah. Professor Tetsuo Kashiwagi from Japan and Dr M.R.Rajagopal from India will be the co-chairs.

The next Asia Pacific Hospice Conference will be held in Taipei, Taiwan in 2013.

CanKids – Pallium India Training Workshop on Pediatric Palliative Care Counseling

CanKids…KidsCan in New Delhi organized a two day workshop on Pediatric Palliative Care Counseling on 15-16 July 2011.

Pallium India’s Senior Medical Social Worker Ms Aneeja Mariam Joseph from Trivandrum Institute of Palliative Sciences, Dr Anjay Babu of CanKids and Ms Shalini Narayan from Fortis Hospital were key speakers at the program.

There were 45 attendees! Congratulations, CanKids team!

CanKids organized its 3rd Pediatric Palliative Care Workshop specifically focusing on counseling & communication in New Delhi, on the 15rd & 16th July, 2011.

This 3rd workshop was a step ahead towards improving our services specifically focusing on Pediatric Palliative counseling & communication to build a greater knowledge of current psychological care practices with a special focus on ways to promote the psychological well-being of child cancer patients and their families in Indian setting.

Through this workshop, we explored the challenges most relevant to working with cancer-affected children in distress.

The workshop was provided by experts like Ms. Aneeja Joseph (main speaker), MSW from Pallium India, Dr. Anjay B. Cankids Pediatric Palliative care physician, and Guest speaker Ms.Shalini Narayan, Psychologist, Fortis Hospital. It was attended by 45 participants (approx.) from different organisations like CanKids, DNip Care, GCCI, Holy family hospital and other individuals.

The primary topics of discussion and highlights of the workshop were:

Understanding what palliative care is all about: “It’s not about dying, It’s about helping children and families to live to their fullest while facing complex medical conditions” or “Adding life to days rather than adding days to life”

The concept of Pain and incorporating counseling in pain management “Pain is under-reported, under recognised and often under-treated, but We Can Change These”

How to disclose/break the bad news for “how you tell it makes a lot of difference”

Bereavement Care – how to deal with it & do’s and don’ts.

Also sessions on when to reach the experts/hand over the case, Self care – “Look Within Yourself” or burnout were much sort after and appreciated by the attendees.

The workshop was a huge success and a great learning experience for all the attendees as one of our participant from DNip care provided us his feedback saying “It was an excellent experience, while I learnt the basic facts about preparing/equipping the care givers or volunteers to take care of the patients.”

Download PDF with more pictures

Documentary: Freedom from Pain

“Freedom from Pain” is a documentary from students at the University of British Columbia School of Journalism, in partnership with Al Jazeera.

The documentary includes scenes filmed at Pallium India and aired internationally on Al Jazeera’s People & Power series last week. Watch on our website…

University of British Columbia documentary shows hidden human rights crisis of medical pain

For much of the Western world, physical pain ends with a simple pill. Yet more than half the world’s countries have little to no access to morphine, the gold standard for treating medical pain.

Freedom from Pain shines a light on this under-reported story. “For a victim of police torture, they will usually sign a confession and the torture stops,” says Diederik Lohman of Human Rights Watch in the film. “For someone who has cancer pain, that torturous experience continues for weeks, and sometimes months on end.”

Unlike so many global health problems, pain treatment is not about money or a lack of drugs, since morphine costs pennies per dose and is easily made. The treatment of pain is complicated by many factors, including drug laws, bureaucratic rigidity and commercial disincentives.

In India, the first stop in the film and the world’s largest grower of medicinal poppy for developed countries, there are severe restrictions to the use of morphine domestically. In 27 out of 28 states in India, narcotics laws are so strict that doctors fear prescribing it, and patients literally scream for relief. Drug companies have little incentive to manufacture morphine for the domestic market because of reporting requirements and small profit margins.

In the Ukraine, the film reveals that access to pain medication is halted by outdated, Soviet-style bureaucracy, arbitrary limits on doses, and a lack of oral morphine. As a result, many patients experience prolonged bouts of untreated pain, particularly in rural areas. In the Ukraine, we learn that Artur, a former decorated KGB colonel suffering from prostate cancer, sleeps with a gun under his pillow – his only way out, should he decide his pain is too great.

Nadia, a single mother living in Kiev, tells of the anguish of living with a son in constant pain. Vlad, her son, was diagnosed with terminal cancer and sent home from the hospital with nothing but the meagre government dose of pain killers. Nadia recounts how his agony grew to the point where he once attempted suicide, nearly throwing himself from a fourth story window. It would be another three long years of mother and son battling with severe pain until Vlad died.

Until the Ukrainian leadership acts to remove the barriers to palliative care, it falls to defiant individuals like Sergey Psiurnyk, a modern-day Robin Hood, to ensure that suffering people get the morphine they need.
Riding with Psiurnyk as he makes his rounds, he says he risks years in jail to collect morphine from sick people who do not need it and deliver it to people who do.

Overall, Freedom from Pain reveals that bureaucratic hurdles, and the chilling effect of the global war on drugs, are the main impediments to a pain free world. Patients will continue to suffer until global bodies actively work with countries to exclude medical morphine from the war on drugs, and change the blunt drug laws that curtail access to legitimate medical opiates worldwide. Uri Fedotov, the executive director of the United Nations Office of Drugs and Crime, admits in the film that the war on drugs is cutting people off from pain medication, but offers little in the way of concrete proposals for changing the status quo.

Lohman points out that inertia may be the greatest obstacle to improving access to morphine, and that pressure brought by doctors and human rights activists is critical to getting pain medication to the people who need it. That is what happened in Uganda, the final stop in the film. Dr Jack Jagwe, who served in that war-torn country’s health ministry in the 1990s, worked closely with foreign doctors and the international community to put into writing that every citizen there should have the right to palliative care – a first in Africa.

Uganda also changed its laws to allow nurses in rural areas to prescribe morphine – another first. Today, they visit people in pain and administer liquid morphine without any doctor’s involvement. Uganda is seen as a potential model for pain treatment, but most improvements around the world have been small and localised, resulting from the efforts of “enterprising entrepreneurs” like Dr M. R. Rajagopal, a pioneer of palliative care. In India, medical morphine is readily accessible only in the small state of Kerala because of his unceasing efforts.

With the help of his colleagues and the cooperation of the state drug controller, Rajagopal led the push to create a streamlined operating procedure for morphine licensing in Kerala. Now patients in desperate need of pain drugs have access and doctors do not fear strict penalties. Rajagopal, who has helped create a model for the rest of India, says what is desperately needed is “systematic evaluation of the problem … in the developing world, and an action plan aimed at overcoming it”.

19th International Conference of the IAPC will be held in Kolkata

From Dr. Nagesh Simha, President, Indian Association of Palliative Care:

I am delighted to inform you that the 19th International Conference of the IAPC will be held in Kolkata, 10-12 February 2012.

The theme is “Education, Training and Research in Palliative Care”.

Registration deadline: 31 July 2011

Abstract submission deadline: 31 November 2011

Registration fees (50% reduced rates before 31 July 2011):

Doctors: Member, INR 2,000 / Non-member, INR 3,000

Post graduates: INR 1,500

Nurses & Volunteers: INR 1,000

Spouse/children: INR 1,500

Full details & registration forms are available at the IAPC Kolkata 2012 website…

LIFE Before Death Series continues

We’ll be posting the series on our website each week. For more information visit the Life Before Death website…

25 Documents You Need Before You Die

Useful guide by Saabira Chaudhuri in the Wall Street Journal. The article covers areas such as wills, proof of ownership, bank accounts, health-care, life insurance, retirement, marriage documents and why you should prepare a “Death Dossier”:

The 25 Documents You Need Before You Die

It isn’t enough simply to sign a bunch of papers establishing an estate plan and other end-of-life instructions. You also have to make your heirs aware of them and leave the documents where they can find them.

[..] The financial consequences of failing to keep your documents in order can be significant. According to the National Association of Unclaimed Property Administrators, state treasurers currently hold US$32.9 billion in unclaimed bank accounts and other assets.

Most experts recommend creating a comprehensive folder of documents that family members can access in case of an emergency, so they aren’t left scrambling to find and organize a hodgepodge of disparate bank accounts, insurance policies and brokerage accounts.

Read the full article here…

Update: There’s a followup article, “Read This Before You Die“

Are You Prepared?

In the United States today, a quarter to a half of all deaths take place in health care facilities. Numerous studies have documented critical deficits in the medical care of the dying; it has been found to be unnecessarily prolonged, painful, expensive, and emotionally burdensome to both patients and their families. Yet, not enough people make the proper preparations to protect themselves. One easy way is to prepare and Advance Healthcare Directive. This is a legal document that makes your wishes known if you were ever to become incapacitated and unable to make crucial healthcare decisions for yourself.

This month, Pallium India-USA members were trained in how to bring this awareness and knowledge to the community. It was given July 20, by Jeanne Wun, Outreach Director of our partner Hospice of the Valley. In this informative and lively interactive session, we learned how to best talk to the community about this sometimes sensitive issue. Ultimately, it is about each person having a say in perhaps the most important medical decision they might make in his or her life. We now plan a speakers bureau so that we are able to talk in various languages to the community, thus ensuring no one is left unprotected.

International Palliative Care Network Poster Exhibition 2011

Palliative Care Network Community (PCNC) will host the International Palliative Care Network Poster Exhibition 2011.

Participation is free and all Palliative Care Professionals are invited to submit to the online poster exhibition. Lead authors of all accepted posters will receive an e-certificate. The 1st, 2nd and 3rd awardees will receive US$500, US$300 and US$200, respectively. Best poster from Africa will be awarded $300, sponsored by FHSSA.

Submission deadline is August 31, 2011. For details of this year’s competition, please visit: www.palliativecarenetwork.com

Institutions, Organizations and Commercial vendors are invited to create virtual booths for free. For details, please contact posters2011@palliativecarenetwork.com by August 10, 2011.

Pallium India’s Dr Sithara Raman and Dr Suraj had won the third prize last year, view it on our site…

Guess what they did with the prize money? Yes, you guessed right. The money went to Pallium India for buying medicines for free patients.

Bursaries in Palliative Care for Africa

This is heartening. The International Association for Hospice and Palliative Care (IAHPC) calls for applications for a bursary scheme to support palliative care in sub-Saharan Africa. This program is made possible thanks to a grant from the Diana Princess of Wales Memorial Fund‘s Palliative Care Initiative.

Individuals living and working in Ethiopia, Kenya, Malawi, Rwanda, South Africa, Tanzania, Uganda, Zambia and Zimbabwe are eligible to apply.

Bursaries will be awarded in two categories:

Postgraduate qualification courses in palliative care: Courses need tobe in institutions which are government accredited and academically affiliated and for post graduate level leading to a certified and government recognized formal degree (ie Distance Learning Diplomas, MSc/MPhil).
Research courses: On basic research and methodology, including study design, statistical tools, statistical analysis and applicability, writing grant applications for research and preparing a paper for publication in peer-reviewed journals.

Applications must be received three (3) months in advance of the course starting date. Preference will be given to individuals applying for courses based in Africa. Applicants may only apply for one of the two bursaries.

To learn more about the criteria, description of the bursaries and how to apply, visit IAHPC website…

The Diana Princess of Wales Memorial Fund’s Palliative Care Initiative is “committed to spending up to £10 million to promote the scale-up of palliative care in sub-Saharan Africa. The desired outcome is that palliative care is accepted as an essential part of, and integrated into, the care and treatment of people with HIV/AIDS, cancer and other life-limiting illnesses.”

On the Shores of Ganga Prem

A report from Pallium India’s Senior Administrator, Dr. C Mohanan:

On the Shores of Ganga Prem

Pallium India staff may remember Sicily Sebastian who came for Cerificate Course in Palliative Nursing from Ganga Prem Hospice (GPH) a year ago.

It was during a private visit to Rishikesh recently that I met her with her husband Sebastian who workwise is Pallium India’s Chandran in GPH. When Sicily was asked to go for the training, it seems, she like many others protested – “I know all nursing; why another training now?” And now she says “I knew nothing; given a chance, I will go again”

The idea of this hospice was conceived and implemented by Dr Ajay Dewan of the Rajiv Gandhi Cancer Institute, New Delhi, who is also the Medical Director of the GPH. The GPH is now working in old partly defunct hospital in Rishikesh, the holy town of so many ashrams and temples. An English lady, now an Indian citizen based in Uttar Kashi, popularly known as ‘Nani Ma’ is running the day to day operations. Near Rishikesh, they have already bought a piece of land and plan to have a building of their own in the near future.

Though christened a hospice, only home visits and monthly cancer camps are taking place now. The main block for full fledged activities is the difficulty to get a full time doctor. But the encouraging thing is that home visits have increased from just one patient to 29 in one year. Each patient is seen up to twice a week. Conceding to their request, I joined the team and visited a few patients in Haridwar, Rishikesh and Dehradun and attended their camps as well. Patients and relatives by and large are satisfied. A medical team visiting and offering consolation and distributing free medicines is a new experience for them.

A monthly camp is conducted at GPH in Rishikesh for cancer detection and for treatment guidance. 60 to 90 patients attend these camps. In a special camp in Dehradun on 24th June Oncology surgeons from Apollo Hospital and Rajiv Gandhi Cancer Institute examined the patients and prescribed treatment. About 70 patients attended the camp. The need for a palliative care physician was felt in the camps.

I had discussions with a few members of the GPH team about their immediate problems and future course of action. Mr Anil Gupta, a soft spoken humble computer engineer is the manager who coordinates activities in Rishikesh. Ms Pooja based in Delhi is a good PRO who gets a lot of free medicines and accessories for the home visit team. She is also in charge of their e-news letter.

Despite their limitations , they are doing some excellent work in this field. However they are yet to venture into areas like awareness programs, volunteers training, link centres, educational support for children, rehabilitation programs etc. Though confined to cancer patients at present, they may have to enlarge the field to include other patients suffering from incurable and debilitating diseases.

GPH is the first palliative care venture in Uttarakhand state. As such they have to prepare themselves to guide future palliative care units in the state. I understand they are capable of mobilising enough funds and personnel and with proper planning and guidance they can surely become the flagship of all palliative care services in the state.

I wish them well,
Dr. C Mohanan
Senior Administrator, Pallium India

UK Report: ‘Stunning inequities’ in end-of-life care

The UK’s Palliative Care Funding Review, commissioned by the new Coalition Government, was published this month. The report has been received well by health charities, an open letter was published in The Guardian: Crucial chance to improve palliative care

The report estimates that thousands of people in the UK miss out on palliative care each year. The report also highlights the inequity within the UK using figures from one primary care trust that spent approximately £186 per death while another spent £6,213.

The Right Care and Support for Everyone

In the report, we recommend the introduction of the first per-patient funding system for palliative care in the NHS. Our proposals include the development of a palliative care tariff based on need, a funding system which incentivises good outcomes for patients, irrespective of time and setting, and providing incentives for commissioning integrated care packages which stimulate community services.
The review’s recommendations have three key aims:

To create a fair and transparent funding system

To deliver better outcomes for patients

To provide better value for the NHS

Download the full report here… (pdf)

Press coverage

BBC Radio, TODAY programme: “Absolutely no clarity’ on end-of-life care”
BBC interviews a father: “He died where he wanted to be”
The Independent: “New end-of-life funding plan ‘fair’”

Quality & Equity

The findings in the report might come as a surprise to some, especially if you recall the July 2010 Economist Intelligence Unit report on quality of care, where the UK was praised for have “one of the best systems for end of life care”. See our blog post: Quality of Death: Ranking End-of-Life Care Across the World

Parting Shot

“We were so deeply in debt. I knocked on many doors, but none opened. We have no one whom we could call our own. I wondered whether there was really a God. I decided to end my life. That day you lent a helping hand. My three children still have their mother because of you. I do not know how to thank you.”

The writer is a palliative care volunteer, the wife of a bed-bound man with Motor Neuron Disease. But what made the woman turn to thoughts of suicide was not the disease, or the disease-related suffering of the family. It was a debt-trap. They were managing to live in their ramshackle hut when the local self-Government institution (the Panchayat) gave them a grant for building a proper house. As almost invariably happens, the construction costs escalated way out of the budget. There seems to be no way they can get out of the trap; and they now will lose not only the new unfinished home, but also whatever they already had. How will they live?

Our organization cannot afford to pay off debts incurred by our patients and families. But here was a desperate situation and a few of us delved into our own not-so-full pockets and raised some money to tide them over the immediate threat of eviction. But this is just one of so many families who are in this plight, for whom financial aid or loans from the Government simply open the door to a deep financial chasm.

The improving financial position of local self-government institutions in India causes this paradoxical suffering all too often. There is not enough social research to identify the elements of the problem and to seek solutions. Indiscriminate aid so often worsens the situation.

Pallium India » Newsletter

April 2012

Dear Friends,

Despite these confounding factors, the fact remains that in the past four years, the consumption of morphine in the country has been stable, not rising. This is indeed worrying!

We thank Dr Elizabeth (Superintendent), Dr Lalitha Kailas (Head of Pediatrics), Dr Mohammed Kunju (Head of Pediatric Neurology), Dr Kalpana, Dr Hariprasad and everyone else at S.A.T Hospital for giving us the privilege of working with them.

The Kids Collective (Kuttikkoottam) is formed of more than 150 children whose education Pallium India supports.

Thank you very much donors and thank you JMM Study Center for providing the facilities.

Congratulations Dr Mary Ann and team!

A few simple words–or even just a silent, supportive presence – can do so much to bring peace to the seriously ill and dying.

Pallium India-USA, which was a sponsor of the event, provided information to participants about culturally sensitive hospice volunteering, advance care planning, and the situation in India.

“Nothing that I did in medical school prepared me for what I do now, at least in terms of Palliative Medicine.”

His own personal story is striking as well.

Why did he become a doctor? And why palliative medicine?

We come to this work for many different reasons, and even–such as in this case–at different points in our lives.

“… always good… Always rewarding.

And always, considering with whom I work, in good, very good, company.”

The group will give a formal presentation about how to develop an Advance Healthcare Directive on April 22 at the India Community Center in Milpitas, CA – Learn more and register here.

Pallium India-USA’s mission includes educating the community about the crucial need to put one’s wishes on paper so as to ensure the best quality end of life care.

We all know that this statement is not perfect.

This is the time when we must use all our contacts with the Department of Health to persuade them to strongly argue to keep the recommendation in.

Scientific evidence can be misleading if it’s not put into the proper perspective.

We are glad to note that palliative and end-of-life care got its place in the Global Summit on Breast Health.

Global Summit on International Breast Health October 3-5, 2012, Vienna

Pain researchers take note!

Application Deadline: May 15, 2012

Awarding-winning LIFE Before Death Series continues…

PARTING SHOT

As always, we are deeply grateful for your support, and we invite your responses to any and all that you have read here.

Don’t forget to sign the Morphine Manifesto!

March 2012

Dear Friends,

A few days back we had sent you our special issue of newsletter announcing designation of Pallium India’s Trivandrum Institute of Palliative Sciences (TIPS) as a World Health Organization Collaborating Centre (WHOCC) for Training and Policy on Access to Pain Relief.

To everyone who has supported us and nurtured our organization during its childhood: THANK YOU VERY MUCH.

The International Association for Hospice and Palliative Care (IAHPC) has announced it will grant ten scholarships from the IAHPC Traveling Scholarship Program.

Application Deadline: March 31, 2012.

Apply online at the IAHPC website…

Exciting News! The Cardiff University MSc/Diploma in Palliative Medicine is now accepting applications for its distance learning scholarship program.

Application Deadline: May 31, 2012

Download the flyer: Cardiff University Diploma -MSc Scholarships 2012 (pdf)

Apply here: Commonwealth Scholarship & MSc Course

Palliative care is a personal kind of care.

In all, ways to help them to blossom into the little flowers they were born to be.

Pallium India’s six week course in Palliative Medicine has become popular among palliative care physicians.

But more often than not, when they return to their respective institutions they find they feel isolated and lacking support.

We thank IACA for funding the project, JDF for its support, CanKids for providing the venue and facilities and Dr Odette Spruyt and colleagues who funded their own travel and other expenses.

The International Association for Hospice and Palliative Care develops a List of Essential Practices in Palliative Care (download)

Our USA arm, Pallium India-USA continues to be active and busy…

Many of us think we know how we want to live our lives. But how many have sat down and discussed how we’d like our lives to end?

A worthwhile activity, and we highly recommend Ms Safe and the Go Wish game to anyone as a way to begin opening up and talking about this important topic.

What are your wishes for the end of your life?

In all, time well spent for both the presenters and audience members.

IN OTHER NEWS

Well, may be, Jonathan Levine will bring out another film some day about the struggles of the cancer survivor, especially in a country like India.

More Attention on Access to Pain Relief as a Human Right…

We were very pleased to hear last week from Meg O’Brien, Ph.D., director of the Global Access to Pain Relief Initiative (GAPRI) of its collaboration with the Nigerian Ministry of Health.

Congratulations to all who were involved in this major achievement.

The media coverage of the global pain crisis appears to have truly hit the tipping point.

We congratulate the students at University of British Columbia, along with HRW and the others in the segment, for so clearly demonstrating to a US audience that pain relief is a basic human right.

Thank you very much Dr Vinay Jain and team!

Awarding-winning LIFE Before Death Series continues…

PARTING SHOT

Many of us have come to see anger as a negative emotion. But, can it have any positive effect? Let us tell you how the question came up.

As always, we are deeply grateful for your support, and we invite your responses to any and all that you have read here.

Don’t forget to sign the Morphine Manifesto!

February 2012

Dear Friends,

For all of you who have been faithful supporters of the palliative care movement, we now have cause for celebration.

The film’s honest and accessible look at pain management and end-of-life questions struck an emotional chord with audiences around the world.

The film, and the meetings and connections it created, has led to new initiatives and partnerships.

The film was screened with a high level of audience interaction: laughs, gasps and tears. When the credits rolled, the audience was initially silent … and then erupted with applause.

Our warmest congratulations to Mike, Sue, and all the others who made this remarkable film and video series.

The level of awareness of this crucial issue is growing by leaps and bounds thanks to their efforts.

For those who are committed to seeing things through, there is much work to do, and much to be glad about.

Why not donate? Remember, just US$20 = one month of pain relief.

Thank you Lien Foundation, Volunteers and Donors!

Thank you, Lien Foundation and Poh Wah. We look forward to Welcoming you to Trivandrum and our work together.

Awarding-winning LIFE Before Death Series continues…

FROM PALLIUM INDIA-USA…

IN OTHER NEWS

“…substantial evidence demonstrates that palliative care—when combined with standard cancer care or as the main focus of care—leads to better patient and caregiver outcomes”

Global Summit on International Breast Health
October 3-5, 2012, Vienna