At this moment, over a million people in India are in unimaginable pain. We refuse to look the other way. We choose to hear the cry, and to do what we can.
Please join us. Your help is needed.

Balance is key to palliative care

2017 January 17

“The layman doesn’t know that pain relief or other symptom control is possible, leave alone psycho-socio-spiritual support. And what is worse, the majority of medical professionals themselves do not know what palliative care is. It is still not taught to medical and nursing students.”

Dr M R Rajagopal, Chairman of Pallium India, is quoted in an article titled Redefining Palliative care published in Health Care Executive published on January 9, 2017. He continues, “There is misconception that palliative care is associated with end of life care and is not recognised as a continuous disease management process.”

Dr Rajagopal explains what motivates him and other palliative care enthusiasts: “What keeps the thousands of palliative care workers in India going is the enormous satisfaction that we get out of the difference that we make. Like the man who comes begging for pain relief is able to smile later and gets to complete any unfinished business or a family is saved from social and emotional destruction.”

Read the complete article Redefining Palliative Care.

Palliative Care in India comes of age

2017 January 16

We do declare; palliative care has come of age in India.

Are we rash in making such a statement, when palliative care is reaching only one percent of the needy? Well, we have evidence. This picture is one.

For the last quarter of a century, palliative care was the topic only in palliative care conferences. For the first time, another body has made it the theme of their conference – the theme of the National Bioethics Conference held at Pune from 13-15 January, 2017 organized by the Indian Journal of Medical Ethics, and the Forum for Medical Ethics Society was “Healing and dying with dignity: Ethical issues in palliative care, end-of-life care and euthanasia”.

There were 350 people in the audience, which included very famous personalities like Dr Binayak Sen, the winner of the Jonathan Mann award, Dr Soumya Swaminathan, the Director of Indian Council of Medical Research, to name but two.

20 different organizations co-hosted the conference, the notable among which were the Indian Society of Critical Care Medicine, Indian Academy of Neurology and Indian Association of Palliative Care.

Pallium India’s chairman, Dr M R Rajagopal, was felicitated at the opening ceremony. He also gave an inaugural address along with two dignitaries, Vidyatai Bal, the founder of Nari Samata Manch, and Syed Adibul Hasan Rizvi from Pakistan, winner of the 1998 Magsaysay award.

Pallium India also facilitated a workshop on the marginalised in palliative care and took part in two other workshops – one on strategies in palliative care and the other, a pre-conference workshop on 12th January. The poster presented by Dr Sreedevi Warrier, “She is all I have” about ethical dilemmas attracted attention and so did the presentation on “Consent, assent and confidentiality issues in studies on institutionalised adolescence” presented by Pallium India’s Project Officer, Sumitha T. S.

Though the confusion in the minds of many associating palliative care with only end of life care, still seemed rampant, the overarching message running through the conference was one of integration of palliative care into health care as a whole.

Pallium India team left the conference venue more than satisfied with high hopes for the future.

Thank you, everyone at IJME and FMES.

“Palliative care: transforming care beyond cure” seminar on January 18th

2017 January 10

Department of vocational studies of St Teresa’s College, Ernakulam is organising a One Day Seminar entitled “Palliative care: transforming care beyond cure” on 18th January 2017. The seminar is intended for UG/PG level nursing, MSW, Science students, Faculty members, Palliative care volunteers.

Posters showcasing services and information to palliative caregivers like ethical issues, symptom management, beliefs, psycho / social / spiritual support, long term care, pain management are invited.

Venue: Seminar Hall, Arts Block, St Teresa’s College, Ernakulam.

 

Insulting the disabled can land one in jail

2017 January 6

According to the Rights of Persons with Disabilities Act, 2016, which was passed by both houses of the Parliament in the winter session of 2016, insulting, intimidating or assaulting the disabled can land one in jail.

As per this new law, the following acts will become punishable with imprisonment for a period of six months to five years with a fine:

  • intentionally insults or intimidates with intent to humiliate a person with disability in any place within public view;
  • assaults or uses force to any person with disability with intent to dishonour him or outrage the modesty of a woman with disability;
  • having the actual charge or control over a person with disability voluntarily or knowingly denies food or fluids to him or her;
  • being in a position to dominate the will of a child or woman with disability and uses that position to exploit her sexually;
  • voluntarily injures, damages or interferes with the use of any limb or sense or any supporting device of a person with disability;
  • performs, conducts or directs any medical procedure to be performed on a woman with disability which leads to or is likely to lead to termination of pregnancy without her express consent, except in cases where medical procedure for termination of pregnancy is done in severe cases of disability and with the opinion of a registered medical practitioner and also with the consent of the guardian of the woman with disability.

The detailed law can be read at: Insulting The ‘Disabled’ Is An Offence: Rights Of Persons With Disabilities Act, 2016 Comes Into Force

Here is the link to the gazette notification: http://www.disabilityaffairs.gov.in/upload/uploadfiles/files/RPWD%20ACT%202016.pdf

Thank you, Justice M R Hariharan Nair (Pallium India’s legal advisor), for directing us to this news.

The incredible story of B J Miller and Randy Sloan

2017 January 5

Dr M. R. Rajagopal, Chairman of Pallium India, writes:

I first came across Dr B. J. Miller a few months ago, when I listened to his TED talk titled “What really matters at the end of life”.

“What a remarkable man,” I thought, “and what an incredible story!”

Anyone who has seen the video cannot miss the fact that B J Miller is a triple amputee. When he was in college, B J Miller lost three of his limbs as the consequence of a whim to climb on the roof of a train. He was electrocuted. The doctors had to remove both his legs, just below the knee, and one arm.

Over the next few months, he continued to live with his three stumps, struggling to not yield to the isolation surrounding him, and discovering ways to keep himself connected with the world. The day he learned not to cover his stumps any more, he says, was his day of independence. He realised that the “exquisitely engineered artificial limbs” were something to be proud of.

He went to medical school and discovered palliative care. To me, it seems so evident that a doctor who has travelled such a journey would be so much more able than one like myself, to identify with his patients and to relieve their suffering.

Dr Miller is featured in a recent article in the New York Times titled “One Man’s Quest to Change the Way We Die“.

The article follows Dr Miller’s life from the time of his accident to being the executive director of a small, pioneering hospice in San Francisco called the Zen Hospice Project, and introduces Randy Sloan, a young tech who had volunteered to take up the challenge of retrofitting a bike for B J Miller. Sloan later became Dr Miller’s patient.

There were two islands of happiness where I wanted to stand up and shout “Hurray!”. The first was when Miller narrated how a nurse, totally illegally, brought in a snow ball for him while he was isolated in a sterile burns unit. That snow ball, he felt, connected him with the universe, which, entirely from a point of view of safety, the hospital was trying to keep out, not quite recognising how totally disconnected with everything he was in there.

The second was the dinner that Randy Sloan and his father shared, just 36 hours before the former died.

But let me not get ahead of the story. Do read the article in the New York Times.