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.
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A welcome verdict; and a few concerns

2018 March 11

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

The judgement of the Supreme Court pertaining to validity of “advance medical directives” is reassuring. It reiterates the value of life, not only in its length but also in quality, accepting death as the inevitable consequence of life and ensuring some preservation of dignity to its very end.

It is sad to see that the confusion regarding the use of the word “euthanasia” still persists. The word euthanasia refers to an act with the intention of ending a life. How can “allowing natural death” be given the name euthanasia even if we use the prefix ‘passive’? The Indian Council of Medical Research is due to come out with the definition of terms relating to end-of-life care on Monday, 12 March 2018. Let us hope that it ends the confusion, once and for all.

Every life has to end some day. When I near the end of the road, most material things cease to be important. My degrees, my car, my bank balance, all will be useless for me. The only thing that would still be valuable is the love that I give and the love that I receive. The human touch, the kiss on the forehead, some loving words of farewell, they will be all-important. Those are precisely the priceless things that would be denied to me in a cold sterile intensive care unit.

I personally have already prepared a document expressing my wish not to be subjected to aggressive medical interventions when facing an incurable terminal illness with serious suffering. With today’s Supreme Court judgement, my wishes will become valid and legally binding on the medical profession. This means that when the time comes, I now have a chance to go with some dignity, hopefully with some of my loved ones by my side instead of being subjected to inhumane, aggressive, futile treatment. To make this possible, I should have access to palliative care so that my pain, breathlessness or any other suffering can be relieved, my fears or anxiety can be alleviated and that I can be in some peace socially and spiritually too. Just as Canada passed a legislation in 2017 making palliative care a mandatory right, we need to ensure access to palliative care.

It is certainly necessary to put in protective measures to prevent abuse of the provision for advance medical directives. At one look, the procedure prescribed by the Supreme Court appears to be too complicated. When I am in agonizing suffering on a ventilator in a hospital, the hospital board will have to meet, study all documents and arrive at a decision. They then have to inform the collector. Let us hope that he will be free and able to act on that day. He sets up a board which studies the documents and arrives at a decision. How many days will that take? Then the decision goes to the magistrate who has to personally visit the patient and then issue the required order. How long will that take? And all this while, I shall be in that cold intensive care unit in agonizing suffering.

Thought processes in this matter seem to be limited by the sensational cases like that of the late Aruna Shanbaug. But this is not only about the occasional person who goes into vegetative state and stays alive for a long time. This is about thousands of people with terminal illnesses who go on ventilators in tertiary hospitals every day. This can potentially apply to all of the 8.2 million people who die in India every year who can afford to go to tertiary hospitals with facilities for artificial ventilation.

The draft of the proposed law “for protection of terminally ill patients and medical practitioners” is still pending with the government. When it is eventually passed by the Parliament, let us hope a citizen-friendly law emerges.

Also Read:

Palliative care cannot be ignored in context of passive euthanasia verdict

Patients Have The Right To Have Their Advanced Medical Directives Honoured – PatientsEngage

Dr Stephen Connor appointed to WHO working group

2018 March 9

We are glad to report that Dr Stephen Connor, the head of Worldwide Palliative Care Alliance and a friend and benefactor of Indian palliative care, has been appointed to the WHO civil society working group ahead of the forthcoming High Level Meeting. You can see details of the group here:

Dear Stephen, we cannot think of many people who could be better advocates for those in pain and suffering. All strength to your hands.

IAPCON 2018, New Delhi

2018 February 27

Pallium India’s Chairman, Dr M. R. Rajagopal, writes:

The growth of palliative care in India was clearly made visible at the International conference of the Indian Association of Palliative Care (IAPCON2018) from 23 to 25 February 2018 at All India Institute of Medical Sciences (AIIMS), New Delhi, preceded by two days of pre-conference workshops. Truly, a great academy feast, conducted with commitment and good time management. Congratulations to the organising team led by Professor Sushma Bhatnagar. She seemed to be everywhere all at the same time!

(Photo: Pallium India team at IAPCON2018)

Mission Chai: Chai with Compassion!

2018 February 27

Would it not be good to start the morning with a cup of nice hot tea?

Perhaps it would be even more appreciated when one is battling a disease in the unfamiliar environment of a hospital. It is not just the tea; perhaps it is also the warm feeling that someone cares.

Mrs & Mr. Rakesh Nayyar and their friends have been serving chai and biscuits for 600 to 700 patients and their family members at Kidwai Institute of Oncology, Bengaluru, since 15 August 2015. They call their program “Mission Chai”. Chai with compassion!

In the picture you see them with Professor Dr Linge Gowda (right), the director of Kidwai Institute of Oncology, a Regional Cancer Centre. He is also a Palliative care physician, we are proud to say.

Our respects to you, Mrs & Mr Nayyar and friends.

Gilly Burn and friends:

2018 February 26

Palliative care pioneer and Pallium India’s long-time supporter Gilly Burn brought a tour of 12 palliative care nurses and one retired physician to Pallium India’s institute at Trivandrum (TIPS) to learn more about the innovative strategies used to deliver palliative care in a environment where access to opioids have been relatively recently introduced.

The group went on home visits and attended team rounds on the inpatient unit. They met with Dr Rajagopal, Chairman of Pallium India, for a robust question and answer period afterwards. Their heartfelt commitment to the mission of Pallium India was clear from the supplies that they donated for the bereavement summer camp for children.

Thank you, Gilly and the international palliative care supporters. It means a great deal that you stopped by!