On Saturday, January 28, Pallium India-USA and the community of Silicon Valley, California were honored with a special guest.

Pallium India chairman Dr. M.R. Rajagopal gave a talk to a full house at the private home of Dr. Jyoti Lulla, a well known and respected Saratoga physician and community member.

The event, organized by Pallium India-USA, was well attended by many physicians, healthcare workers, Silicon Valley executives and engineers, and others who wished to learn more about the work Pallium is doing in India.

Pallium India-USA Volunteers

Dr. Jerina Kapoor, chair of Pallium India-USA introduced Dr. Rajagopal.

Dr. Rajagopal’s hard hitting and at times emotionally intense talk took on the serious problem of suffering and pain relief in India.

He told two stories: one of a poor woman, Sangeeta, whose mother was dying of cancer. Her own future was foreclosed on as a result of the impoverishment created by the absence of an adequate medical and social system. The second story was of a wealthy man, Mr. Das, who nonetheless was traumatized by his doctors’ insistence he undergo needless life-extending treatments.

Dr. Rajagopal challenged the audience to think about and plan for their own future.

“Most of us won’t have the good fortune of an instant death,” he said. “The majority will have a prolonged decline.”

A lively and passionate discussion followed his presentation. The quality of the talk was a sure sign that positive change is possible when it comes to caring for the seriously ill and dying around the globe.

In all a very successful event.

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.

The next six weeks’ certificate courses in palliative medicine, palliative nursing and palliative care instead of starting as usual on the first Monday of the month, will start on 16 May 2011 and will end on 25 June 2011.

The subsequent course, as scheduled, will start on Monday, the 4th of July.

Those who wish to apply for the courses, please apply using the application forms here:

palliumindia.org/courses/

Palliative Care Toolkit Training Programme, SGPGI, Lucknow

It was led by Dr Mhoira Leng, the director of the international organisation Cairdeas International and the palliative care team at SGPGI consisting of Dr Shakeel Ahmad, Dr Sanjay Dhiraaj and palliative care nurse Alice among others. The group also had interactive sessions with medical personnel from nearby medical colleges.

Around 20 people were trained in 5 days and more than 40 were sensitised to the compelling need for palliative care services in the region. Significant coverage in the media ensured that more and more people who need such services but had no prior knowledge of this form of treatment will now be able to access it.

We are also happy that the team has been able to increase their home care services in the last few months.

Download a PDF of press clippings about the training programme - articles printed in English and Hindi.

Komandy, Kyrgyz Republic

It was deeply satisfying to come across Dr Nargiza Dadahanova‘s kind words of appreciation in our blog, about the work we are doing.

She has shared with us her experiences in the area of cancer treatment in her country. We would like our readers to have an inside view of the state of affairs in palliative care and treatment in a resource poor country like hers, the Kyrgyz Republic:

Dr Nargiza Dadahanova

I am the founder of the Sante Foundation in Kyrgyz Republic. I am an oncologist and working in the National Oncology Center.

Due to the lack of financial resources and means to provide for a psychiatrist position in the center, the work load of the oncologists is increasing. Therefore, the idea of establishing a foundation for providing cancer patients with oncological and psychiatric help was initiated.

During the last year, psychiatrists of our foundation provided psychological help to cancer patients who were treated in the Mammology Center and in the Palliative Care ward in the National Oncology Center.

In the course of our work, we face a number of problems:

• Total lack of the specialists in the area of palliative care and also lack of an informational resource center where we can find information about palliative care in Russian or in Kyrgyz languages.
• On the legislation level, there is no article about palliative care in the law on cancer care.
• Because of lack of awareness among people about symptoms of oncological diseases and their detection and also because of low living standards in the country, in 47% of cases patients apply to the oncology center at the III – IV stage of disease.
• Lack of updated, reliable statistical data about cancer cases.
• The problem of providing complex, valuable help to such category of patients is not raised and discussed among population and on the governmental level and patients and their relatives stay isolated in this problem.

As of now, we have undertaken the following steps:

• We have visited the Public Fund Revival, met with their representatives and attended several seminars that were conducted by representatives of the Cestadomu organization Jona Valjentova and Jindriska Prokopova.
• After these seminars, we have started to work on a strategy of development of palliative care in Kyrgyzstan and the creation of a multi-disciplinary team.
• Psychiatrists of our fund have begun to provide psychological help to patients in the palliative care ward of the National Oncology center.
• We are working towards opening a unit for treatment of chronic pain for cancer patients.
• We have also started working with the local Ministry of Health on including an additional article about palliative care into the law on cancer care.

Nargiza: we are glad that our blog reached you and inspired you to share your experience with us. Thank you!

We invite our readers in similar circumstances to use this as a platform for showcasing their problems and solutions so that every one can benefit from the fount of collective experience. Contact us via the website or leave comments below…

Admission is now open for the following six weeks certificate courses at Trivandrum Institute of Palliative Sciences.

• CCPPM for doctors
• CCPN for nurses
• CCPC for those who are not doctors or nurses, but with an interest in palliative care and those have passed 12th standard and acquired any degree,diploma or fellowship in any subject.

Those who wish to apply for the course starting on the first Monday of July (5 July) or subsequent alternate months, please apply using the application forms here:

http://palliumindia.org/courses/

SPOTLIGHT…

Stepping Out…Beyond The Window…

Eleven families got together at TIPS (Trivandrum Institute of Palliative Sciences) on May 16th, 2010.

Families of 11 special people who are all paraplegic. Most have been confined to their beds till Pallium India reached them.

The palliative care organizations in their own areas (we call them our Iink centers) arranged for their transport.
The major objectives for arranging such a meet were:

• To get them out of their four walls. This trip symbolised a major step forward in their struggle for independence.
• To build a forum for them so that they form their own support system.
• To explore greater opportunities for vocational rehabilitation for thousands like them
• To have some fun (The day ended with an hour of spell-binding magic presented by Magic Academy, Kochi.)

They had inspiring stories to share …stories of real life…of courage, acceptance, perseverance and optimism against backdrops of tragedy, rejection, despair, apathy and insensitivity of the society they live in, brightened at times by little rays of light and hope…the essential humanity of man.

Four years ago, as he was preparing himself for his law studies, 20 year old Gokul was involved in a car crash which left him a paraplegic. After agonising years of trying to put his shattered life together, he went back to his Law Academy, this time, on a wheel chair. There were many steps to negotiate to get to the classroom. He met the head of the institution. Could they construct a ramp so that he and another student similarly disabled could get to their classes? Not only was the request turned down, it was also insinuated that his presence in the institution was emotionally distressing for his fellow students.

Many such stories of official insensitivity and social neglect and apathy came to light …but, there were also glimpses of beacons of light and hope. A young man whose own family rejected him was cared for as their own by his wife’s parents and siblings. Another had surrendered himself entirely to God Almighty and thanked Him for preserving his life. And there was Vijayaraj, who writes poetry holding a pen between his palms, because he had lost the use of his fingers. He sang an invocation that he himself had written and composed.

What was strangely fascinating about these special people was that almost all of them had such happy faces. And the show-stopper was Preetha who could never stop giggling even as she described the arduous journey uphill for about 200 meters the team which carried her and her wheel-chair had to undertake, to reach a path from where she could use her wheel chair.

Ever-smiling Preetha handing over a flower which she has made to the Chief Guest Shri M Ayyappan

She had got through to the Chief Minister at one of his phone-in programs on television and asked for a path from her house to the road on which she could travel by wheel chair. She was instructed to file an application with the local administration. However, the office wanted her to appear in person; it was not their concern that she could not walk. But Preetha was not disheartened. She heard about palliative care on the radio and eventually found the palliative care volunteer Lijo. Palliative care relieved her of her central pain. Lijo provided her with raw materials with which she could make dolls, plastic flowers and bead necklaces with her hands. She proudly displayed her wares at the meet and everything was sold out. She went back with a large order for more.

The group decided to have an organization of their own and left with an action plan for the future.

Congratulations Mr Sunaj, Dr Baburaj, and Dr Shibu and the rest of the team for initiating the program and for carrying it through so successfully. And our special thanks to our long time friend and well wisher Mr Bruce Davis from UK, who is supporting us in numerous ways with his encouragement and funding the physiotherapy project.

Sometimes, all it needs is a helping hand to raise someone and help him walk back to the road of life.

STAFF CLUB…

Alarm Bells About Chemicals and Cancer

photo credit: BrittneyBush

The US President’s cancer panel is reported to have made the following recommendations, according to a report in the New York Times

• Particularly when pregnant and when children are small, choose foods, toys and garden products with fewer endocrine disruptors or other toxins. (Information about products is at cosmeticsdatabase.com or healthystuff.org)
• For those whose jobs may expose them to chemicals, remove shoes when entering the house and wash work clothes separately from the rest of the laundry.
• Filter drinking water.
• Store water in glass or stainless steel containers, or in plastics that don’t contain BPA or phthalates (chemicals used to soften plastics). Microwave food in ceramic or glass containers.
• Give preference to food grown without pesticides, chemical fertilizers and growth hormones. Avoid meats that are cooked well-done.
• Check radon levels in your home. Radon is a natural source of radiation linked to cancer.

A Deadly White Dust

Woman filtering asbestos

Melody Kemp from the Society for Environmental Journalism writes about how Western countries banned asbestos and how then the industry shifted its focus to developing countries.

In 2006, she says, India imported 360,000 tonnes of asbestos.  And in 2008, India – along with Pakistan, Canada and Russia – rejected the banning of chrysotile asbestos mandated under the Rotterdam Convention on Prior Informed Consent.

Asbestos-related diseases cause a very painful and slow death.  She points out how vast the suffering is and how even palliative care is not available to the sufferers.  She writes:

The pain of mesothelioma and other asbestos-related diseases can be agonising and requires another white powder – morphine – to provide relief. Ironically many of the countries where asbestos disease is rife, such as India, have a shortfall in the supply of legally scheduled opiates. There is no shortfall in asbestos.

Read the full report: http://www.chinadialogue.net/article/show/single/en/3600

Part one of the report here: http://www.chinadialogue.net/article/show/single/en/3597-A-deadly-white-dust-1-

Indian Express: Weekend Visits

The Indian Express has come out with a news item about some palliative care activity in New Delhi.

The North of India has so little palliative care and any new activity is such good news!

Every weekend, volunteers of DNipCare, a palliative care group, visit people in pain. They don’t claim a cure, only a little comfort.

What are you doing this Sunday? Would you like to drive up to a hospice, next door to Safdarjung Hospital, and meet Rajesh Bhakt, a 19-year-old terminally ill cancer patient?

Read more at Indian Express…

Free Resource: PalliativeDrugs.com

With the cost of textbooks and journals remaining what it is, this is a precious site that provides essential independent information for health professionals worldwide about drugs used in palliative and hospice care.

The content is based on the UK Palliative Care Formulary (PCF, 3rd edition) which was Highly Commended in the British Medical Association 2008 book competition. It includes details about unlicensed (unlabeled) indications and routes, and the administration of multiple drugs by continuous subcutaneous infusion.

To access the site, it is necessary to register:

• Click on ‘To register for access..’ to create your own username and password.
• They will ask you to provide contact and other details, including your registration number with a professional body like the Medical, Nursing or Pharmacy Council of India.

PalliativeDrugs.com is a free-access resource. You can help them to remain that way by buying books published by PalliativeDrugs.com from their bookshop, e.g. Palliative Care Formulary, Hospice and Palliative Care Formulary USA, Symptom Management in Advanced Cancer, and by completing market research surveys when invited to do so from time to time.

Once registered, they recommend that you first read “Getting the most out of the PCF3“.

PROJECTS…

Hamrahi – APLI & Pallium India Joint Project

Hamrahi means fellow-traveler. Well, that is exactly what a group of Australian doctors plan to do – travel with us on the difficult journey that many of our patients have to go through.

Project Hamrahi is a collaborative venture between Pallium India and Australia Palliative Link International (APLI). (Thank you Dr Nirmala, for finding such an appropriate name for the project!)

The concept took birth at Perth, during the joint conference of Asia Pacific Hospice Network (APHN) and Palliative Care Australia (PCA).

Dr Odette Spruyt (a friend of Indian Palliative Care) from Peter MacCallum Cancer Center in Melbourne had given a talk based on her Indian experience, and several Australian doctors came forward to help. Discussions between Dr Odette Spruyt and Pallium India gave clarity to the idea.

Project Hamrahi is designed to fill a certain need. As it stands now, doctors and nurses get trained in palliative care for six weeks. Once they go back to their home towns, they are on their own to fight a thousand barriers, with negligible support.

Project Hamrahi envisages continued mentoring by one expert – hopefully matching one expert with one palliative care program on a long term basis.

In preparation for the project, a preliminary workshop has already been held in Melbourne.

ACCOLADES…

Lisa Pain & Palliative Care Society’s 10th Anniversary

On 01 May 2000, Mr David Joranson, director of the WHO Collaborating Center at Madison-Wisconsin, formally inaugurated the Lisa Pain and Palliative Care Society at Tiruvambady, a small town in the outskirts of Calicut.  Housed in a private hospital as its charitable arm, it was founded by the owner of the hospital, Dr P.M.Mathai.

In 2003, they started home visits and a few years back, an inpatient wing for palliative care was added.  The work involves both the hospital and the community and out of about 100 volunteers, about 20 attend to the work on a regular basis.

The institution celebrated its 10th anniversary on 01 May 2010.  The festivities started with a rally by school students, scouts & guides and volunteers followed by a public meeting.  The most noticeable feature was the joy and enthusiasm of the team of volunteers.  Their sense of achievement and fulfillment were obvious.

Best wishes Lisa PPCS!

Institutions like yours have a special place in development of palliative care in the country – that of integrating hospital based practice with community based work.

Indian Palliative Care Featured in APLI Newsletter

… see palliative care practised at the highest level with limited resources was inspirational.

The April issue of Australia Palliative Link International newsletter features mostly India.

Several authors write about their experiences in Trivandrum, Trichy and Delhi. In the issue:

• Developing collaborations with Pallium India and APLI – Dr Odette Spruyt
• Palliative Study Tour – Dr Anil Tandon
• Reflections on Trichy Palcon 2010 – Dr Sok Hui GOH
• Impressions of TIPS at Trivandrum – Dr Judith McEniery
• A student visit to TIPS – Teresa McEniery
• Mapping the CanSupport Journey – Harmala Gupta
• Palliative Care Snapshot – Dr Naveen Salin

If you are an Indian, it helps to see how others view this country.

If you are not, well, this may prepare you to understand our problems on the palliative care front a bit better.

Click here to download APLI’s April Newsletter…

STUDENTS CORNER…

Six Week Certificate Course at TIPS

Those who wish to apply for the course starting on the first Monday of July (5 July) or subsequent alternate months, please apply using the application forms here: palliumindia.org/courses

International Palliative Care Network Poster Exhibition 2010

Palliative Care Network Community (PCNC) will host the International Palliaitve Care Network Poster Exhibition-2010.

The top three posters will receive: 1st Prize : US $ 500 / 2nd Prize: US $ 300 / 3rd Prize : US $ 200

The lead authors of all accepted posters will receive an e-certificate. Lead authors of all outstanding posters wil receive an e-certificate with an honorable mention.

Participation is open to all palliative care professionals from across the globe.

Deadline for poster submission: 11:59 Eastern Time (USA), August 31,2010.

We look forward to your participation in yet another unique and innovative endeavor - click here for details…

PARTING SHOT…

Teresa McEniery, an Australian teenager, came to visit us. On her return, she wrote about her experiences in the APLI (Australia Palliative Link International) newsletter.

She says she came:

as an unconvinced and unmotivated prospective medical student, with the hope of gaining deeper insight into the reality of medical practice

She was touched by how

the palliative home visit team often sat with the patient and their family, talked with them, ate with them, and on occasion, cried with them

She says,

To see medicine practiced in such a different context, entirely stripped of the business-like character that is at risk of developing, and simply a case of human beings doing all that they can to help other human beings, was inspiring

and concludes,

If this is what medicine can be, then this is the work that I want to do.

Dear Teresa, thank you for your kind words about our team, but you also make a very important point about medical education. Seeing is believing. Medical students anywhere must be given an opportunity to see palliative care being practiced. Seeing it once or even for a few days may not change their practice all the time, but at least there will be the realization that medicine need not necessarily be all technology, and what genuine compassion can achieve is amazing.

STOP PRESS…

All of us heard with mind-numbing shock the news of the horrible air crash at Mangalore in South Karnataka on 22nd May in which 158 lives were lost.

8  survived miraculously, among whom 3 are in a critical state. In the midst of this terrible tragedy shines the  heriosm of the local population. They rushed to the site uncaring of the risk to their lives, improvising with available resources to work hand in hand with the official force.

Their service was invaluable; their humanity, incomparable. Such experiences exemplify the spirit of volunteerism that the Palliative Care Movement has brought to the surface in this country.

We salute these heroes.

• UPDATED with full quote and link to English translation of speech (via HRW)

President Pratibha Patil (r) with Delhi Chief Minister Sheila Diskhit.

Mrs Pratibha Patil, President of India, inaugurating the new Manav Sevarth Trust Action Cancer Hospital in West Delhi on March 2, highlighted the need for palliative care.

We believe this is the first time someone high up in the Central Government Machinery has acknowledged the need for palliative care, quote from Yahoo! News the President’s full speech:

Cancer patients require proper care. To lessen their unbearable pain, palliative centres should be established. Along with it, training programmes should be conducted for doctors and nurses. Their skills should be developed in such a way, that proper attention can be given to cancer patients, as they require considerable support and care. I hope the doctors, paramedical personnel and management of this hospital will fulfill their responsibilities with full commitment and dedication.

Unfortunately, late past presidents of India did not have access to palliative care and have indeed died in greater suffering than their fellow-Indians.

The task force‟s recommendations were published (de Graeff A, Dean M. J.Palliat.Med.2007 Feb;10(1):67-85) but were not accepted by the EAPC.

Now the board of the EAPC has published not guidelines, but a framework.

You can find the framework (Nathan Cherny and Lukas Radbruch) and an accompanying editorial (Katherine Hauser and Declan Walsh) in Palliative Medicine 2009 23(7).

“Refractory symptoms” are a cause of immense suffering to the patient and family and of considerable stress to professionals and other carers.

Despite the controversy surrounding the issue, palliative sedation does offer an ethical choice to a large number of people.