March 2012 Newsletter

2012 March 28
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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.

  1. 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.
  2. 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?
  3. 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.

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…

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 4 films released in March:

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

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!

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