When we celebrated (yes, celebrated, not just observed) World hospice and Palliative Care Day on the 8th of October at Trivandrum, it lead us to a decision for the future.
What we did this time was the sort of thing to do on that day in future. Fund-raising is needed, no doubt, but this is ESSENTIAL.
But wait a minute. More about this towards the end of this newsletter. First, see the announcement about Bruce Davis Medal. If you know any budding doctors who have completed their MBBS in India between 2006 and 2011, please convey this to them. There is not much time left!
Application Deadline: Tuesday, 1st November 2011
Mr Bruce Davis from Cornwall, UK, has been a supporter of palliative care efforts in India for a decade and a half. He has instituted a Gold Medal in Palliative Medicine for young doctors.
Dr E Divakaran, Chairman, Board of Examiners invites applications from doctors who appear(ed) for final M.B.B.S examination between 31.12.2006 and 31.12.2011 from any Medical College in India.
The detailed call for applications, application form, list of resources and the screening test are available here:
PLEASE NOTE: Completed applications must reach Calicut before Tuesday, 1st November 2011
Hearty Congratulations to Mike Hill, Sue and the team at Australia’s Moonshine Movies for winning an “Award of Merit” from the Accolade Competition for their LIFE Before Death series – even before the official release!
The Accolade is unique; it is an awards competition, not a traditional film festival. Awards go to those filmmakers, television producers, videographers and new media creators who produce fresh, standout productions. It is a showcase for cinematic gems and unique voices and recognises producers, established and emerging, who demonstrate exceptional achievement in craft and creativity.
The Pain and Palliative Care community all over the world is grateful to everyone at LIFE Before Death and Moonshine Movies for this great achievement in advocacy for the cause.
We’ve been posting each release from the 50-part LIFE Before Death series on our blog, the most recent being No.23 “Ripple Effect”. With more than half the series yet to be released the films have already been watched an amazing 31,000 times on YouTube!
Ms Jyotsna Govil from Indian Cancer Society, Delhi, writes:
There is much excitement in the Deaf community here, as they finally understand what we take as simple information.
The film was released on 16 October at the Cancer Sahyog (Emotional Support) Seminar on Familial Cancers.
We hope to reach out to an hitherto unreached audience!
“42% of the world’s countries have no palliative care services”
In 2006, Professor David Clark and Dr Michael Wright from the International Observatory on End of Life Care (IOELC) presented a report (pdf) that measured palliative care development in all countries of the world and classified them according to levels of palliative care development.
The IOELC 2006 report used a four-part typology:
- No known hospice-palliative care activity (Group 1 Countries)
- Capacity building activity (Group 2 Countries)
- Localised hospice-palliative care provision (Group 3 Countries)
- Countries where hospice-palliative care services were reaching a measure of integration with the mainstream healthcare system
The mapping exercise has been repeated in 2011 with some new criteria.
Within the typology, changes have been made to the criteria for level of palliative care development in groups 3 and 4 and these have been subdivided to produce two additional levels of categorisation: Groups 3a, 3b and Groups 4a, 4b.
India has been upgraded from Group 2 to Group 3b. This shows progress from “Isolated provision” to “Generalised provision” characterised by:
- the development of palliative care activism in a number of locations with the growth of local support in those areas
- multiple sources of funding
- the availability of morphine
- a number of hospice-palliative care services from a community of providers that are independent of the healthcare system
- the provision of some training and education initiatives by the hospice organisations.
We should rejoice!
The growth is definite and more widespread, though we wish the change was more visible in terms of opioid consumption or some such indication of significant rise in the percentage of needy population accessing palliative care.
- WPCA Report: “Mapping levels of palliative care development: a global update 2011” (pdf)
- Indian Association of Palliative Care press release (pdf)
- The Hindu: Study calls for more palliative care facilities
It may mean many things including pain, but most of you would not immediately think of abandonment by the husband, of children being orphaned, or of living with not only the pain of cancer, but also the pain of rejection, feeling of worthlessness and total despair.
Amidst all the sadness, is it not heartening to see that someone cares?
The Assistant Sub-Inspector of Police, Mr Vijayraj, found Vasantha and brought her to us – giving us the privilege of doing what little we could to ease her suffering.
C. Maya reports in The Hindu on World Palliative Care Day:
Vasantha is just 37. But as she lies on the hospital bed, floating in and out of consciousness, she looks a hundred years old.
Painkillers coursing through her system sustain her through the day, giving her some relief from the unrelenting pain of cancer. But the anguish she goes through, just looking at her two young girls by her bedside, cannot be dulled by a shot of morphine.
Vasantha’s physically challenged sister, her sole caretaker, is helpless every time Vasantha cries over the fate of her children. Vasantha was brought to the palliative care clinic run by Pallium India at SUT Hospital four days ago by Vijayaraj, a palliative care volunteer. He found her at her house in Keezhattoor, Kattakkada, doubled over and writhing in pain. With pain relief and care, she is at least able to sit up and talk now. “All we can do now is to assure her that her two girls – aged 15 and 13 years – will be in safe hands,” says Vijayaraj, an ASI at AR Camp, Nandavanam.
Vasantha had been diagnosed with breast cancer four years ago and she had undergone mastectomy (breast removal) at the Regional Cancer Centre. By the time she came back from the hospital, her husband had abandoned her for another woman. With only an ailing father and a physically challenged sister at home, her hopes died fast.
“She used to go for manual labour and take good care of us. She kept her pain to herself and sent the children away to a charity hostel,” Vasantha’s sister says. She refused treatment because there was no money or support.
“I was fed up. I stopped taking the medicines because they gave me severe stomach upsets and mouth ulcers. I knew I was dying but nothing had prepared me for the pain that will kill me a little day by day,” Vasantha says.
Her children, brought to visit her by a neighbour, looked bewildered. Seeing their mother at peace had given them the tiny hope that she will come home soon.
“It is a sad, sad story and one that we cannot rewrite, however much we would like to. But then, this is the story of every patient we see,” says Dr. Sithara, at Pallium India.
“Think of the others whom we may not see at all, dying painful deaths in some dark corner. How can we, as a civilised community, just stand aside and shun all responsibility? Palliative care is not just about helping one die painlessly but about giving a helping hand to the devastated family to stand up and continue living. A government cannot do that always, but each one of us can,” M.R. Rajagopal, the chairman of Pallium India, says.
UPDATE: We are sorry to report that Vasantha died two days after the report appeared in the newspaper. Our social workers are following up about her daughters.
India’s Cancer Aid Society (CAIDS) invites applications and nomination for the CAIDS Palliative Care Award 2011.
Closing Date: 12 noon (IST) 30th November 2011
CAIDS is an Indian NGO working Nationwide since 1987 on Palliative Care, Advocacy, Tobacco Control, Cancer and Non Communicable Diseases Prevention and Control.
The award winner will be presented with a plaque and a prize of Rs.100,000 in February 2012 at the 19th International Conference of the Indian Association of Palliative Care, Kolkata.
Applications and nominations are open to:
- Doctors, Paramedical Staff and Social Workers
- with demonstrative leadership in the field of Palliative Care for the Cancer Patients
- from India, Bangladesh, Bhutan, Nepal, Pakistan, Afganistan and Sri Lanka
Application should be made online along with the references and verifiable evidence (through media and pictures) in order to identify the leadership of the applicants or nominee. Closing Date: 12 noon (IST) 30th November 2011
When they rang up to say they would bring some visitors from Rajasthan, it appeared to be another routine visit.
We welcomed this group of 20 doctors from State Institute of Health and Family Welfare, Jaipur, Rajasthan and talked to them briefly about palliative care and what is being done in Kerala. The team was led by the Director of the Institute, Prof Akhilesh Bhargava.
They had traveled the previous night, and had had a long day, yet there was some enthusiastic discussion and then we were ready to call it a day.
And then we found them huddled in a group and having some private conversation. They were delving into their own pockets and making a collection. In five minutes, a handsome donation was handed over to us.
Thank you, Dr Bhargava and team!
We know that you yourself are doing some very very important work in Rajasthan – and that you are not even funded by your Government!
All strength to your hands and we hope to work with you in future.
A heartfelt piece published in the New York Times by a mother whose son will die by age three.
Emily and Ronan’s story shows, from an emotional standpoint, why palliative care is such a basic human need and right:
Santa Fe, New Mexico.
MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him.
I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state. He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?
Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.
Parenting advice is, by its nature, future-directed. I know. I read all the parenting magazines. During my pregnancy, I devoured every parenting guide I could find. My husband and I thought about a lot of questions they raised: will breast-feeding enhance his brain function? Will music class improve his cognitive skills? Will the right preschool help him get into the right college? I made lists. I planned and plotted and hoped. Future, future, future.
“Death, even when it seems inevitable, doesn’t have to be painful”.
The author writes based on her experiences during her mother’s treatment for cancer, describes the message of palliative care and goes on even to related concepts that are not usually talked about like ‘Palliative Sedation’.
Thank you Nazeem! The more the people writing about pain management and palliative care, the less the pain in this world.
Advocacy is indeed the need of the day.
Pallium India, together with National and District government authorities, organized a get-together for patients in and around Trivandrum, Kerala, particularly those who are bed-bound round the year – a day full of fun, laughter and entertainment.
The event gave our patients and people from the community the opportunity to interact, empathise and join hands to further the cause of palliative care.
There will be a discussion with officials from the Kerala Social Security Mission on the different schemes and benefits available to patients.
Volunteer artistes will come together to sing to celebrate Voices for Hospices, followed by a magic show to entertain the audience. The patients along with their families will be then taken on an outing to the Museum.
“a small note I made on what I witnessed on World Palliative Care Day,” from palliative care volunteer, Bindu Nair.
8th October was World Palliative Care Day. I happened to attend the programme arranged by Pallium India at Salvation Army Youth Center, Kowdiar, Trivandrum, Kerala.
When I got there, I saw the volunteers helping handicapped patients to climb down from the bus, with so much care.
I was so much moved and happy to see so many people who were ready to help the needy around them.
Their selfless gestures overwhelmed me. I am glad that in this world of corruption and selfishness, there are people who are generous enough to help others and understand the pain of their fellow beings. I thanked Almighty for making me a part of them.
The programme was as follows,
- The chief Guest was Mr.Chandramauli, Airport Director of Trivandrum International Airport.
- An interactive session with patients & their families followed.
- A skit and songs by students of Mar Baselios Engineering College.
- Food for all.
- Songs by some of the patients also.
- An outing to the Museum.
On the whole it was a very satisfying experience at the end of the day. People should have such experiences to make them humble & admit that GOD IS GREAT.
Prakash came in with a donation for Pallium India on the occasion of his father-in-law’s death anniversary. His wife, Bindu, had wished it. And had died six days after her father.
Bindu had been under Pallium India’s care for quite some time. Life was not easy for her especially towards the end.
Yet, during those last few days, she had intimated her desire not only for this donation, but also for something most people would not do.
Bindu did not want her body cremated, but wanted it donated to a Medical College so that medical students could dissect it and learn anatomy. She wrote down her desire and intimated it to Prakash, who was determined to fulfill her wish.
But it was not easy. Traditions and rituals stood in the way. Many relatives found it hard to accept the situation.
Fortunately for Prakash, an uncle took a firm stand and declared, “Her desire WILL be fulfilled”.
Prakash went through the formalities and handed over her body to Alleppey Medical College.
Bindu, thank you for this lesson in giving. We bow to your memory.
Prakash is now an informal consultant on the formalities for anyone who wants to do the same thing for themselves or a loved one.