May 2011 Newsletter
“The best portion of a good man’s life – his little, nameless, unremembered acts of kindness and love” – William Wordsworth
Pallium India’s Trivandrum Institute of Palliative Sciences (TIPS) wanted to add one more home visit team to cater to the increasing demand.
We were worried about finding the funds for this, when Professor Balachandran Nair, a cardiovascular surgeon and secretary of the Freemason (Lodge Trivandrum No.168) dropped in and offered us a vehicle.
Manna falling from Heaven! We understand that many members of Freemasons’ Club contributed liberally to make this happen.
A coalition of palliative care organizations including the Lien Foundation, International Association for Study of Pain (IASP), Institute of Palliative Medicine San Diego, The May Day Fund, and Union for International Cancer Control (UICC) have come together to produce a series of 50 short films – one to be released each week – free for public viewing. Mike Hill and team from Moonshine Movies in Australia have spent a couple of years of their lives to produce them.
OK, the problem is visible now. What are we going to do about it?
LIFE Before Death is a documentary project about the remarkable health professionals battling the sweeping epidemic of pain that threatens to condemn one in every ten of us to an agonizing and shameful death. Their tireless struggle pits them against unfeeling governments, dysfunctional bureaucracies, voracious corporations, over-zealous law enforcement agencies and, above all, the deep-seated attitudes of you and I.
Through the eyes of patients and their families we discover the inherent humanity that empowers the best of us to care for those beyond cure. We uncover hard truths about the torture occurring everyday in hospitals around the world but also of the immense hope that comes from those health care pioneers brave enough to accompany terminal patients on their inevitable journeys to gratifying end-of-life experiences filled with dignity, love and peace. This is a story of living well and dying better, making the most of every moment in our life before death.
Pallium India received the following from a friend, who wishes to remain anonymous – Thank You, Dear Friend!
Over the years people began to realise that florists were making a lot of money from people competing to show how much they loved the deceased person.
Nowadays, more and more people make donations to charity in memory of their loved ones, as they feel the money is more usefully used.
My mother died last week aged 96 years and in her memory I enclose a cheque, which I am sure Pallium India will find useful.
MNJ Institute of Oncology, in collaboration with International Network for Cancer Treatment and Research (INCTR) and Pallium India, invite applications for its one-year Integrated International Fellowship in Paediatric Palliative Care.
Last date to submit applications for the course is May 31.
The course commences on July 1. Candidates, with PG qualification in paediatrics, from the State will be preferred. Full details and application forms can be downloaded here: www.palliumindia.org/courses/ppc
There was a capacity crowd of 3,400 people in the world’s largest conference for entrepreneurs. Pallium generated a lot of interest among the high tech engineers.
Dr Jerina Kapoor, founder & president of Pallium India-USA, said:
Many attendees asked how they could be of help to the cause of Pallium, both in USA and India
It is all so heartening! Congratulations, Jerina and team. Your enthusiasm is infectious!
A new report, Uncontrolled Pain: Ukraine’s Obligation to Ensure Evidence-Based Palliative Care, from Human Rights Watch found that tens of thousands of patients with advanced cancer in Ukraine unnecessarily suffer from severe pain every year because they cannot get effective, safe, and inexpensive pain medications.
The report describes Ukrainian government policies that make it impossible for cancer patients living in rural areas to get essential pain medications. While most cancer patients in cities have access to some medications, the treatment they receive is inadequate and provides only limited relief. Download the full report here…
Vlad is suffering from incurable brain cancer. Despite his chronic pain, doctors in Ukraine are only able to prescribe minimal amounts of morphine due to bureaucratic restrictions. He is allowed only 50 mg of pain medicine per day. In another country, doctors would typically prescribe more than 2,000 mg for a patient like Vlad.
The Jiv Daya Foundation, based in Dallas, Texas, has become a major player in the palliative care scene in India.
They help with capacity building of many palliative care services in India, including Pallium India’s Trivandrum Institute of Palliative Sciences.
Please see Jiv Daya’s newsletter to hear about the workshop they conducted in Delhi, “1st Annual India Palliative Care Initiative Meeting”, in March 2011 and about their various activities:
“Easing pain and suffering” were common words at this year’s 1st Annual India Palliative Care Initiative Meeting, held on March 13 in Delhi. The Director’s Boardroom at the All India Institute of Medical Sciences was filled with many of the key players in Indian palliative care, brought from all across the country to discuss opportunities to enhance patient care and quality of life. Everyone present agreed on the importance of collaboration and pooling resources to make each center as effective as possible in caring for patients with advanced disease.
Dr. M. Rajagopal of Pallium India began the meeting by sharing a snapshot of the situation on the ground. Common challenges introduced by his presentation were access to morphine, lack of trained staff, and a lack of awareness of the need for palliative care.
Men and women as young as 18 years of age have to get their voice boxes, sections of wind-pipes, cheeks and tongues surgically removed as a result of their tobacco use.
You could save the life of a friend, or permanent scarring and suffering, by sharing Chew On This with as many people as possible.
Help me get back to my job at the cancer ward, rather than dealing with these entirely preventable tobacco-caused diseases.
Support the campaign & limit the devastating impact of tobacco by signing up at www.ChewOnThis.in
The Chew On This campaign is supported by World Lung Foundation, Indian Dental Association, Voluntary Health Association of India, Doctors For You, Voice of Victims, Tata Memorial Centre, Mouth Cancer Foundation, Salaam Bombay Foundation, Healis – Sekhsaria Institute for Public Health, ACT-India, Art of Living Foundation, Brahmakumari, Gayatri Pariwar, Rotary Ahmedabad, International Union Against Tuberculosis and Lung Disease (The Union) and other NGO and civil society organisations for a Tobacco Free India.
Death is feared by most, no doubt. Can it become a beautiful experience, the final expected opening of a door, the person turning back smiling to say farewell and quietly passing through?
Maybe it can, but as things stand now, even the mention of death makes some people angry. Then what reaction would the filming of a dying process elicit?
The second episode of the BBC’s new series, Inside the Human Body, will show the final breaths of an 84-year-old man dying from cancer. The Guardian reports on the controversy:
The BBC has braced for criticism after filming the dying moments of a terminally-ill man whose family agreed for the death to be captured on camera.
A BBC science series, Inside the Human Body, will show the final breath of 84-year-old Gerald as he dies at home surrounded by his family. The producers recognised the second episode of the series, which includes footage of the death, would anger some people, but said they wanted to tackle the difficult subject.
Presenter Michael Mosely told the Radio Times he believed the programme was justified and that it was important not to avoid “talking about death and, when it’s warranted, showing it”.
“There are those who feel that showing a human death on television is wrong, whatever the circumstances,” he said. “Although I respect this point of view I think there is a case to be made for filming a peaceful, natural death – a view shared by many who work closely with the dying.”
It would not be the first time the BBC has faced criticism for showing death on screen. Early this month it was accused of being a “cheerleader for assisted suicide” after filming the last moment of a man at a Dignitas clinic in Switzerland for a Terry Pratchett documentary. The programme, due to be broadcast on BBC 2 this summer, follows a 71-year-old man in the late stages of motor neurone disease. The fantasy novelist, a vocal supporter of euthanasia, stays at his bedside until he dies from a mixture of drugs taken to end his life.
Inside the Human Body will track the development of a life – from conception to the grave – and will feature the moment of conception, a baby’s first breath, the body’s development to adulthood, and the body’s defence mechanisms.
The second episode, which features Gerard’s death, will also look at a woman who has survived for 10 years eating nothing but crisps, a man who can hold his breath for nine minutes, and another who can swim in water so cold it would normally kill. The final part will examine what happens when the body gives up its fight for survival.
“We met many wonderful people while making the series, but Gerald was special. We were privileged to share, with his family, his last few weeks and the moment of his final breath,” said Moseley.
After approaching several hospices asking for permission to film, A hospice in Pembur, Kent, had put the programme makers in touch with Gerald because they felt it was “important that life-threatening illness and death is discussed and understood more in our society”.
Gerald, who had cancer, said he hoped filming his death would help others. “I don’t want to die, but pretty evidently unless some miracle happens, I ain’t gonna be here very long … I’m not frightened,” he said.
“I don’t believe that it’ll be just like cutting off some tape with some scissors, though it might be. But either way I have blind trust that I shall not disappear completely,” he said. He vowed to see the start of 2011, and died on 1 January, surrounded by family.
Mosley said: “The death of a loved one is a hugely significant moment in all our lives, but not something to be feared. I watched my own father die. Just before the end he decided to start singing. He sang for several minutes and then he stopped and he was gone. I’m so glad I was there and the time I spent with him before his death are among the many memories that I treasure.”
The episode of “Inside the Human Body” mentioned above was broadcast as planned, you can watch the section of the show on our blog…
Some media comment on the broadcast:
- The Telegraph: Why the BBC was right to air footage of a dying man
- The Independent: Television is not how to witness the passing of a life
- The Daily Mirror: Gerald becomes first person in Britain to die on national television
And, from The Guardian TV review:
It is not the kind of thing I would choose to watch every night, but the film was a genuinely moving, unsentimental portrait of an intimate moment and, compared with the daily dose of violent death we get on the news, it did more to make death seem less scary than any theologian has ever done. I can’t say I would choose to have my death filmed, but it was Gerald’s death and Gerald’s choice.
What do you think? Please leave your comments here…
The final article from a special feature in The Hindu Sunday Magazine, “Palliative Care in India”:
Dr. Nagesh Simha, President, Indian Association of Palliative Care, says caregivers need enormous patience and compassion…
When is palliative care necessary?
When any disease has gone beyond cure. The commonest cases are cancer, HIV-AIDS, end-stage kidney failure, end-stage cardiac failure, and neurological problems. Palliative care tries to improve quality of life in the last days.
Are treatment facilities in India adequate?
No. Currently, the number of centres offering palliative care in India is grossly inadequate. They cater to only one per cent of those needing it.
First, lack of awareness among the medical profession and the general public. Second, difficulty in obtaining morphine.
What qualities should a person giving palliative-care have?
Most important — compassion. Then, enormous patience. Finally, appropriate resources.
For a list (not comprehensive) of institutes offering palliative care in India, see: www.palliativecare.in
Read the other 4 parts on our blog:
- The Hindu: The Promise of Total Care
- The Hindu: Kerala Shows the Way
- The Hindu: A Caregiver’s Story
- The Hindu: For freedom from pain
- Download a PDF of the Magazine supplement (page 1 & 6)
Pioneered by Dr Odette Spruyt, the project organizes mentoring visits of at least a week each every year of an experienced palliative care specialist in Australia with a palliative care service in India, envisaging continued support. So far, the program has been a huge success.
The 30th of April saw a review meeting of the project held at Melbourne. The mentors came together for sharing experiences, and for identifying strengths and weaknesses of the project and making suggestions for future strategy.
Dr Rosalie Shaw, the former executive director of Asia Pacific Hospice Network (APHN) was present at the meeting and it was good for all participants to draw from her experience.
Pallium India thanks Dr Odette Spruyt and all mentors for their contribution of time and resources.
Judith McEniery, an Australian Palliative Medicine specialist from Ipswich, Queensland visited palliative care services in South India during 2009. In 2010 she came to Trivandrum for a brief time and became aware of Pallium India and the work supported by the Trust.
In lieu of the usual gift giving, they asked their wedding guests to support the work of Pallium India with a monetary donation. Judith spoke briefly of Pallium at their reception and said:
“It is a small but practical way that we can share and promote the development of much-needed Palliative Care services in India. I have felt a strong pull towards a connection with India for many years, and with Pallium, this has come to reality.
Kevin and I are delighted the money can be used to help patients directly, and indirectly through teaching and advocacy. We look forward to hearing of progress.”
On the 21st of April, Pallium India received the proceeds – a cheque for more than 1-lakh Rupees (~$2500), along with a personal donation from Judith and Kevin of more than Rs. 40,000.
What a wonderful gesture! Thank you all donors, and may your union be blessed, Judith and Kevin!
It used a mix of several learning methods. There were lectures, interactive discussions, group discussions and actual visit to patients in Siriraj Pain Clinic.
During the final feedback, rather predictably, there was the opinion that the experience shared by real patients was powerful. But equally significant was the observation by a participant that they found group work more beneficial than most other sessions.
Most medical education in India (and in most developing countries) is didactic. Palliative care education in the country has been bolder and has been by and large innovative. Group work and role plays are often used and prove to be of great value.
But are we innovative enough? Do we at times slip back to old and habitual ways? This feedback is a gentle reminder that we can do better.
posted by palliumindia in Newsletter