Negotiating the right to live with dignity

Renu Sud Sinha

Sometime in the last few decades, death and dying quietly moved out of homes and reached hospitals. Not just life, but death too became medicalised.

In a land where the ‘soul never dies’, accepting death, dying and grief became elusive. While death has always been a crucial component of the cycle of life, the Constitution only enshrined the Right to Life under Article 21. It took Aruna Shanbaug’s 38-year ordeal for the law of the land to acknowledge in 2011 that Right to Life was also inclusive of the ‘right to die with dignity’. Though Shanbaug never benefited from the case, it sparked off a debate on the need for passive euthanasia for terminally-ill patients.

Acting on another PIL, in March 2018, a Constitution Bench of the Supreme Court delivered a judgment that paved the way for critically-ill patients to seek death by executing a living will or an advanced medical directive (AMD). However, the guidelines and the procedures laid down by the court made it difficult for implementation of this directive.

Last month, the apex court simplified this process by modifying the guidelines, making the ‘right to die with dignity’ less bureaucratic and hence more accessible.

The 2018 judgment hindered more than it helped, says Dr Rajesh Pande, HoD, critical care, BLK-Max Super Speciality Hospital, New Delhi. He is also the general secretary of the Indian Society of Critical Care Medicine (ISCCM). It was on an ISCCM application in 2019 that the apex court has revised its judgment.

“Nobody ever came forward. There was zero action but many repercussions. Earlier, doctors had been discussing these issues with families as part of the quality initiative for end-of-life care as the law was silent on it. Most major hospitals had a senior nurse and administrator or an ICU team to make families aware about their end-of-life-care options. But after the 2018 judgment, the legal cells of the hospitals totally advised against it.”

The recent judgment, therefore, comes as a welcome step, particularly for those working in the field of palliative care, an interdisciplinary approach that aims at improving the quality of life of both the terminally-ill patients by managing their pain and suffering as well as their caregivers. Dr Roop Gursahani, consultant neurologist, PD Hinduja Hospital, Mumbai, who was part of the medical panel advising the Supreme Court in the Aruna Shanbaug case, says, “Hopefully, things will change fast now. We will be able to work with this judgment to build public awareness.”

Most end-of-life activists who have been working in this field call it a step in the right direction. Critical care specialist and pulmonologist Dr RK Mani, who is also the former president of ISCCM, has been pursuing this cause for over 20 years now. He says the responsibility now lies with the doctors to create and spread awareness. “Death literacy is quite poor in India and other low-income Asian countries. It is slowly increasing globally. It’s time we adopt it aggressively as India has a substantially ageing population with all possible diseases. The government has also recognised the need for palliative care, incorporating it in the National Health Policy 2017.”

Called the father of palliative care in India, Kerala-based Padma Shri awardee Dr MR Rajagopal has been working for 30 years to integrate palliative care across medical health institutions in India.

“In India, at least 70 per cent of patients die in the ICUs. It is gross injustice. What most doctors have learnt and seen in the last 30 years is to concentrate on keeping the heart beating. This attitude in healthcare management has to change.”

For this to happen, it is necessary to impart the right kind of communication skills so that there is an equal patient-doctor relationship rather than the typical paternal kind, says Dr Mani. “The curriculum has to change accordingly where medical students are taught how to care and not just cure as well as arming them with the necessary communication skills.”

Dr Minni Arora is a palliative care specialist with Chandigarh Hospice and Palliative Care Services, a project of the Indian Red Cross Society in collaboration with the Department of Radiotherapy and Oncology, PGI, Chandigarh. Initially, what was just a short-term job became a life-long commitment for her. In the past 22 years, Dr Arora has been a witness to changing communication. “Before the hospice started, terminal cancer patients and their caregivers were often told ‘Ghar le jao, sewa kar lo’ (take them home and serve them well). But ‘how to do it’ was never explained. The hospice was a result of that. Now, the doctors, patients and their families are much more receptive when options change from cure to care.”

A beginning has been made as the Medical Council of India (MCI) has included palliative care in the undergraduate curriculum as part of its new AETCOM (Attitude, Ethics and Communication) module. The Indian Nursing Council has also integrated palliative care in the UG nursing curriculum.

For those already invested in the system, these communication skills are part of their responsibility. “These conversations have been happening in a niche way in the private sector where 80 per cent of healthcare already happens. But soon, these conversations will percolate and become mainstream,” adds Dr Mani.

Doctors have to take the responsibility to keep these conversations going and create public awareness at multiple levels, says Dr Gursahani. “The medical fraternity also has to accept that the patient is the bigger partner and need to tell the truth to families and patients when cure options run out.” People, too, have to understand that it is not just their right but duty to take responsibility of their own last stage, says the neurologist, who has already made an AMD.

This modified judgment has evoked a mixed reaction among the medical fraternity. While most are calling these revised guidelines a good start, some like Dr Rajagopal feel these are still unworkable and a law is needed. The SC in its judgment has already recommended framing a legislation.

“These guidelines are quite basic. A legislation will have the capacity to provide details and scenarios to give clarity to doctors,” says Dr Dhvani Mehta, co-founder of Vidhi Centre for Legal Policy, New Delhi. She was part of the legal team that assisted senior advocate Arvind Datar, who argued the case on behalf of the ISCCM. “Right now, the judgment is restricted to the terminally-ill and addresses withholding or withdrawal of life-sustaining treatment in a limited manner. In the coming times, there may be a debate around active euthanasia or medically-assisted deaths. Currently, none of the judgments addresses such issues. A law will have much more scope and can address finer points like who can qualify as next of kin in case there is no next of kin,” adds Mehta.

“A detailed law is needed to safeguard the medical community so that a doctor is not held liable for negligence,” concurs Datar.

So, what’s the way forward? “As every human is a stakeholder, everyone should make a living will and have open discussions in the family,” says Dr Rajagopal. Datar, who has made several recommendations, many of which were accepted by the court, agrees. “People should take advantage of the judgment and make a living will,” says the lawyer, who is also going to make one himself.

Advance medical directive

Living will or Advance Medical Directive is a legal document in which a person, when in sound mind and good health, may record his wish that he should not be kept alive with the help of ventilators, if doctors, at any stage of his life, opine that he cannot be kept alive without a life support system.

Guidelines: Then and now

• A judicial magistrate had to attest or countersign a living will.
• In case treatment was to be withheld or withdrawn, the hospital had to constitute a primary medical board with at least four experts from general medicine, cardiology, neurology, nephrology, oncology, psychiatry with an overall experience of 20 years.
• There was no outer time limit for treatment withdrawal.
• In case the primary board recommended ending the treatment, a secondary board had to be constituted by the District Collector, having the Chief Medical Officer besides three other specialists.
• Now, a notary or gazetted officer can attest the living will.
• The hospital can constitute a primary medical board with only three doctors, including the treating doctor and two more specialists with five years’ experience. The board will decide within 48 hours on withdrawal of treatment.
• The hospital must immediately form a secondary board with one expert nominated by the CMO and two more doctors.