Suma (not her real name) was a 26 year old postgraduate diploma holder in computer science, but had been unable to go to work because she had to care for her mother in their precarious thatched hut, perched on a strip of land that, according to Government records, did not belong to them.
Suma had given up her life to look after the mother. If there was a support system to help care for people like her mother, Suma could have had a good career, built a life and still looked after her mother. But it was not to be. The medical system bled the family and forced them into abject poverty. Neighbours found the mother dead, with Suma hanging right above her.
We palliative care workers are too often overwhelmed by stories like this. We reach them too late, or when we do, our support is nowhere near enough. And, not infrequently, we are forced to reject people who need us most, because they live too far away or simply because their social or other problems are beyond our ability to solve. Some of us burn out, unable to cope with the suffering. Some of us go on, because so many of you out there wish us well and support us.
This Christmas season, we share our pain with all of you for feeling so impotent that we were not able to support Suma and her mother enough.
Suma, you lived a brave and meaningful life while it lasted. We pray for your forgiveness for not being supportive enough.
One of the greatest failures of the Indian palliative care scene is poor integration into routine health care.
The little palliative care that is in the country, is too often limited to end of life situations, so that patients often have to go through a lot of suffering during months or years of potentially curative treatment. But things are changing, though slowly.
Rajiv Gandhi Cancer Centre at New Delhi has been having a home visit program for a long time and is now seriously considering integration of palliative care into their routine services.
(Dr Dewan addressing the workshop, above.)
As a first step, on December 10th 2010, they organised a one-day workshop on palliative care, which Pallium India had the privilege of participating in.
Mrs Jyotsna Govil, one of the founders, and Dr Dewan, Medical Director, were the chief organizers.
Their enthusiasm was infectious, and we look forward to working with them on their noble mission.
21-23 January, 2011 at India International Centre, New Delhi
- To introduce the principles of palliative care to a multi-disciplinary group of doctors, nurses, counselors, social workers and volunteers
- To equip participants with knowledge and skills to improve pain and symptom control of patients under their care at home, hospital or hospice
- To enable participants to improve their communication skills and handle difficult issues, such as breaking bad news and coping with loss and grief
- To demonstrate the need and viability of multi-disciplinary team approach in providing palliative care to patients
The course is a concentrated, multidisciplinary introduction to the growing specialty of palliative care. Although the focus is on patients with advanced cancer, the principles discussed are applicable to the care of all patients with life-limiting illnesses. It is a practical structured course aiming to tackle the subject of palliative care in the Indian context. Besides expert trainers from CanSupport and Institute Rotary Cancer Hospital, AIIMS, the faculty will consist of national and international experts in palliative care. (Delhi Medical Council accreditation of 19 CME hours)
Course Fee: Rs. 1000/-
Last date for registration: 10 January 2011 (Limited Seats)
CanKids 2nd Capacity Building Workshop for Pediatric Cancer Support Services & Pediatric Palliative Care – 14-17th December 2010, New Delhi, India
- Dr Anjay Babu Sadasivan, CanKids Pediatric Palliative Care Physician & Palliative care consultant – GCCI, New Delhi
- Dr. Amita Mahajan, Senior consultant & Pediatric Oncologist – Apollo Hospital & CanKids Vice president, Technical
- Dr Sindhu Nair, Oncologist and Palliative Care Physician, Global Cancer Concern India
- and the CanKids Training Team
The International Association for Study of Pain (IASP) had organized a “Global Pain Summit” on 3 October 2010 at Montreal, Canada. The chairman of Pallium India was a member of its steering committee.
The summit had announced “The Montreal Declaration“, which has now been accepted by the IASP council. Essentially, the document declares access to pain relief as a human right, and spells out the components of that right.
Please support the cause by signing it.
It will take only a minute of your time!
Pallium India-USA was invited to participate in a Health and Wellness Fair at the Jain Center of Northern California, in Milpitas on 13th November 2010. The event was organised jointly with the South Asian Heart Center.
The topic was Palliative Care and Advance Health Care Directives for the US based South Asian population.
Quite a lot of people expressed interest with two pages of our guestbook filled with names of people who want to know more about Pallium India – many of them want to consider volunteering.
Many thanks, you wonderful people. Expect an email from us soon!
Ms Wei-Yee from Asia Pacific Hospice Network (APHN), writing on behalf of APHN Chair Dr Cynthia Goh:
The course fee for selected candidates from India will be at a subsidised rate of USD2,000.
The course application form and funding information can be downloaded from the APHN website…
Wei-Yee goes on to say that additional funding is also possible from Help the Hospices.
If you have questions, plesae contact Wei-Yee by email: email@example.com
See our previous blog entry on: APHN Diploma Of Palliative Care / Graduate Certificate In Palliative Care
Dr Frank Ferris has informed us of a wonderful scholarship opportunity open to physicians from developing countries, offered by The Foundation of Children’s Hospitals and Clinics of Minnesota and Children’s Institute for Pain and Palliative Care (CIPPC).
Dr Ferris says, “Dr. Friedrichsdorf and his team are very committed to advancing pediatric palliative care in low and moderate resource countries.”
APPLICATION DEADLINE: JANUARY 15, 2011
Scholarships to applicants from developing countries for the Pediatric Pain Master Class, Minneapolis, MN, USA (June 11-17, 2011) plus a one-week clinical practicum (June 6-9, 2011) with the Pain and Palliative Care team. [PDF]
Funded by The Foundation of Children’s Hospitals and Clinics of Minnesota, the Children’s Institute for Pain and Palliative Care (CIPPC) is offering two competitive scholarships for physicians from developing countries currently working in the field of pediatric pain and/or palliative care.
The recipients of this scholarship will be selected based on leadership abilities, commitment to moving the field of pediatric pain and palliative care forward, and attending to underserved pediatric populations. The goal of this scholarship program is to identify medical professionals who are in a position to improve acute and chronic pain management for children both in their institution and beyond (region or country).
This 2-week International Scholarship includes:
- Airfare to and from Minneapolis/St. Paul
- Hotel accommodation and meals
- 1-week practicum with the Pain & Palliative Care Team at Children’s Hospitals and Clinics of Minnesota (June 6-9, 2011)
- 100% course tuition for the Pediatric Pain Master Class, Minneapolis, MN, USA (June 11-17, 2011)
- Ongoing mentorship
The DEMOS report, Dying for Change, finds that two out of three Britishers would prefer to die at home, but actually 60% of them die in hospital today. And that is in a country in which the concept of palliative care was born and bred and which is in the forefront in the international palliative care scene.
The report mentions that UK needs 500 billion pounds a year to provide sufficient support at home. Is that not a lot of money? It sure is, but think of the huge amount of money it will save from needless hospital costs!
The institutionalised ways we cope with dying do not align with how most people aspire to die. Most people want to die with family and friends nearby, cared for, free from pain, with medical support available when needed. Yet most people will die in hospitals and care homes, often cut off from friends and family, dependent on systems and procedures that feel impersonal, over which they have little control and which too often offer them little dignity. We spend large sums of taxpayer’s money – at least £20 billion a year – on services that leave too many people feeling confused, frustrated and distressed too much of the time.
The UK should be able to provide people with better ways to die. The pamphlet argues for improvements to existing services: making end of life advance care plans the norm; training more in the medical profession in palliative care; and more greatly integrating the care services provided by the public, private and voluntary sectors. It also suggests radical innovations: a new infrastructure of home hospices, the creation of a compassionate care benefit and a properly trained volunteer support network providing palliative care – a perfect opportunity for the Big Society. The challenge is to help people to achieve what is most important to them at the end of life. Dying for Change describes how that challenge can be overcome.
When we consider developing countries like India, even if the health care system does not care about the feelings of dying people and their families, it should at least consider the reduction in health care costs!
From the DNipCare blog:
Shri Ghulam Nabi Azad, Honourable Union Minister for Health & Family Welfare appreciated DNipCare by his jotting down in the Visitor’s book, “I am extremely happy the way DNipCare is providing home to home service. I wish the organization best of luck”.
It is the first time in the history of India International Trade Fair that Palliative Care concept has been given a chance to propagate to the masses. We are grateful to the Ministry of Health & Family Welfare and also to all our wellwishers who encouraged us in our mission for the ailing patients.
Congratulations, DNipCare! And thank you Mr Suresh Thaliyaril for sending the information to us.
- We’ve blogged about DNipCare before: Indian Express: Weekend Visits
Dear All, Happy to inform you that Institute of Palliative Medicine has been designated as a World Health Organization Collaborating Center (WHOCC) in Palliative Care. IPM becomes the fifth WHOCC in Palliative Care in the World and the first one in the Developing world. We hope that this important designation to a center in India can be used to strengthen the evolving national palliative care initiative in the country.
Dr Suresh Kumar
Director, WHO Collaborating Center for Community Participation in Palliative Care and Long Term Care
Do you see a scar going round the neck?
That scar should be on our collective conscience.
“Ramesh” (not his real name) is just 25. The industrialization of our brave new India drove him from his agricultural land in rural Karnataka and made him a truck driver. When he got pain in his tummy and eventually was given a diagnosis of HIV, that world rejected him. Pain, HIV and the rejection together forced him to try to hang himself. “I did not succeed even in that,” he says ruefully.
How many thousands of desperate men in every state in India are like him, in pain and suffering, rejected by the medical system and the society?
“Ramesh” is one of a small minority of people with HIV and pain who get care and pain relief. He has been taken in by Asha Jyoti, a care centre run by “Samraksha” in Kushtagi, Northern Karnataka.
Over the last two months Pallium India has been collaborating with Samraksha to bring in routine pain assessment and symptom control as part of the routine care at Asha Jyoti.
There is a long way to go yet at Asha Jyoti, but a good beginning has been made, and an amazingly sincere team is doing a wonderful job.
But how long will it be before pain relief and palliative care become essential components of HIV care in India?
The issue of opioid availability is such a huge concern for palliative care people that all their antennae go up when they hear the word ‘poppy’.
Set on the Gangetic plains and the wide ocean during the days of the British Raj, it is indeed a masterpiece. Read it and it will take you inside the Opium and Alkaloid Factory in Ghazipur. And the poppy is indeed a major character in the book,
Like all the gifts that Nature gives us – fire, water and the rest – it [opium] demands to be used with the greatest care and caution.
Wise words indeed. We palliative care people in the developing world particularly need to remember this. In our enthusiasm to improve access to opioids, do we sometimes forget to ensure that it is stored, dispensed and monitored with caution?
One of the fundamental ethical principles of medical practice is “Justice” – the fair allocation of available resources. So, should the National Health Service of UK offer Avastin, a drug that can possibly prolong survival in cancer?
When the National Institute for Clinical Excellence (NICE) announced that it would not approve funding for Avastin, it set off a predictable firestorm of protests from concerned groups.
The Guardian points out that a rational discussion should take into consideration a recent report in the New England Journal of Medicine which showed that early access to palliative care improved survival by as much as three months in people with lung cancer.
It also showed that access to early palliative care increases the likelihood of people getting precisely what they want out of their final months and reduces suffering, depression and burden on their family at the same time enabling them to live longer.
Interesting, is it not, that despite this evidence, there are people to fight for Avastin, but not for the much less expensive option of early access to palliative care!
Pallium India is honoured to partner with American Cancer Society (ACS) in disseminating an excellent resource on cancer “prevention to palliation with an additional focus on their caregivers”.
The material, created by an expert ACS team of medical editors from India and the US under the guidance of a National Advisory Board (India), falls into two categories:
- KEEP YOURSELF HEALTHY
A series of documents about healthy behaviours and prevention & early detection for breast, cervix, and oral cancers and
- IF YOU HAVE CANCER
Documents addressing common issues such as side affects, pain, lab tests, etc. that patients and their caregivers are concerned about when undergoing cancer treatment.
The PDF files are available in English, Hindi and Gujarati. Please share them with your colleagues, friends and family.
If you have taken a good look at the WHO’s definition of palliative care, you would recollect that it includes “prevention of suffering”.
Why should we wait till a cancer has progressed to the incurable stage and then only provide tender loving care? Let us do what we can to prevent suffering.
The 2009 edition of the Oxford Textbook of Palliative Medicine says,
… a study in rural Kerala, South India, of those below the poverty line, the main reason for the poverty in nearly 30 percent of cases was the cost of medical treatment.
Well, India does not seem to have monopoly on the matter. The UK’s Independent newspaper reports in “Counting the cost of a drugs revolution” that Western medicines are making China’s ancient medical practices increasingly redundant, but their high price tag is also pushing millions further into poverty.
Cheryl Eckl shares her poignant story in “A Beautiful Death – Facing the Future with Peace”, her book on facing death, grief and loss with confidence, peace and grace,
In 2004 I was living a dream. I had been married to Stephen, the love of my life, for 14 years. But when he was diagnosed with terminal cancer, I suddenly found myself on an unexpected and unwelcome journey with no road map.
At first I did my best to keep him alive, to preserve our life together, to give us more time to love each other. When it became horribly clear that he was not going to make it, I had to change my focus from his survival to easing his pain and helping him through the dying process as authentically as he had lived.
A Beautiful Death is our story of love and loss, of learning and letting go, of my doing absolutely all I was capable of for the one I loved. And of believing that, while nothing could save him, everything I did could contribute to a better end.
I wrote this book to explain to myself what happened so I could bear to go on with my life alone. And I wrote it for you as proof that not only can you handle whatever challenges life sends you, but you can also become more present to life’s joys in the process.
Dying is something we will all do in this life, and it is likely to be difficult; but what matters is who we are being while we’re doing it. Stephen taught me that and that’s the story I fashioned from the journals I had kept during our 18 years together.
Throughout Stephen’s illness, I found that reading about how other people faced death gave me courage and confidence that I could walk up to that final doorway with my beloved. I hope that reading A Beautiful Death does the same for you.
- Cheryl offers plenty of helpful advice on her blog…
Here is a letter from a parent who suffered prolonged pain and finally loss of a child – to any parent whose child has been given a difficult diagnosis or who has lost a child. The writer is Ms Dianne Gray of Elisabeth Kübler Ross Foundation.
First, my most sincere condolences on the diagnosis of your child.
Second, hold on to your to hat, your heart, your mind, and most of all, get ready for the ride of your life.
You will no longer see life as expendable, and you will never be able to go back to a time when the candles of a birthday cake mean looking forward with hope or with an eager anticipation of joyous beginnings.
I know because, like you, I was once the parent of a child who was newly diagnosed with an incurable disease. The most honest advice I can give is this: Let the dishes pile up in the sink (though mold is just plain gross) and let the fresh air in, because there is no time like the present to enjoy your child’s laughter and smell his or her skin. Kick your shoes off, eat popcorn in bed, then have a good hard cry. First for your child, then for yourself.
Honestly, not only is your child’s life ending, but your lifetime dreams have just been “put to sail”, so to speak. Feel sorry for yourself, because you deserve it. Then get up, and make the most of the incredible life lesson that you have just received. It’s called, “Life is Short.” You will never, ever, take a day or an hour with your child or any other loved one, for granted again.
Trust me, there are millions of drugs sold every day to people who are filled with a life lacking gratitude or an appreciation for those around them. You will not be in line for those, though at times you will feel like you need some sort of pharmaceutical assistance to get through the day. Shockingly, you probably will not need them because your drive to protect and love your child will act as a drug itself.
Most important, listen to your gut, your intuition. You know what I’m talking about. Some of you already knew before you were told by your child’s physician, that you were in deep, deep “doo-doo” as they say, when it came to the topic of your child’s health. On those days when you look into your child’s eyes, and you “know” something is wrong, listen. No one knows your child as well as you do. You have probably been “connected” way before the moment of his/her diagnosis, so trust your intuition and take seriously your role as your child’s advocate, mouthpiece, and protector.
Finally, remember that you are loved by a community that is by far larger than you can possibly imagine at this moment. The “club” of parents who have had sick kids is many and we are mighty. We may not carry on our backs a placard that says “mother of dying or dead child”, but we are there and we love you though we don’t know you. We are in line at the grocery store and the mall. We are in the elevator, at the gas station, and on airplanes sitting next to you. We ache for you and somehow, we know of your unspeakable burden.
Reach out for help sometimes when it seems completely ridiculous or terrifying to do so. You never know who will standing beside you. It may even be me.
Blessings as you continue your journey,
As We Close Out 2010…
No matter how much we read about suffering or watch other people suffering, it is only when we ourselves suffer that we know what pain is.
This Christmas season, let us take a pledge to be sensitive to the suffering of others.
Life does not require us to make good, it asks only that we give our best at each level of experience.