July 2011 Newsletter
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.
- Lettter to Health Minister Azad for PC partners (.doc)
- Priority Palliative Care Language for UN NCD Summit (.pdf)
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!
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!
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.
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.
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.
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…
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.
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.”
“Freedom from Pain” is a documentary from students at the University of British Columbia School of Journalism, in partnership with Al Jazeera.
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”.
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
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.
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.
We’ll be posting the series on our website each week. For more information visit the Life Before Death website…
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”:
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.
- Update: There’s a followup article, “Read This Before You Die“
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.
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 firstname.lastname@example.org by August 10, 2011.
Guess what they did with the prize money? Yes, you guessed right. The money went to Pallium India for buying medicines for free patients.
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.
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.”
- Frontline Palliative Care: Learning from the Kenyan Experience:
- Evaluation of Kitovu Mobile Palliative Care Service, Masaka, Uganda (pdf)
A report from Pallium India’s Senior Administrator, Dr. C Mohanan:
On the Shores of Ganga Prem
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
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.
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
- 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
“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.
We MUST together find a solution.
posted by palliumindia in Newsletter