Tuesday, April 16, 2024

Living on Your Terms

The pandemic had exposed all of us to our own mortality. The severe mental stress that many people are experiencing is leading to those under financial and mental strain taking their own lives. Taking control of one’s life and death will be looked at with what the law permits.

By Shaan Katari Libby

The last two years—with numbers of the dead being the very first thing we hear on the news—has meant that we have all had to accept our own mortality. “Carpe diem” or “seize the day” literally means we should live each day as if it was our last, and this from a lawyer’s perspective, also means one should have everything in place—in case it really is our last day. I was brought up on Murphy’s Law and this pandemic has reinforced this. I wrote my first will as a teenager, and have of late been writing wills for people of various ages. I find younger adults are now getting their affairs in order—not because they have been diagnosed with a terminal disease— but just because they are recognizing that at the end of the day we are all terminal.

End of life wishes tend to include the desire to ensure loved ones are taken care of, and that they don’t have to make tough decisions on their own, that things are set out for them making a difficult time just that little bit easier. People also seem to want to have a degree of control over their own deaths by having an “advanced plan” or “death plan” also known as a “living will”  in case of incapacitation. These often include advice from the family physician as to what the likely weaknesses might be for each patient and family is made aware in advance what the patients’ wishes are. As Dr. Anjana (Dr. Mohan’s Diabetes Centre) says: “More and more families are learning to understand patients’ wishes now. Of course depends a lot on family dynamics”. Wishes include thoughts on palliative care, wishes to donate one’s body for its organs, donating one’s body for science (possible via an agreement with any local medical college who will gladly accept a cadaver of any age), and so on.

Thiswhole area is vast,and there is so much one needs to think about and be aware of.The ideas surrounding taking control of one’s life and death will be looked at here and what the law permits. Terms like suicide, euthanasia, and mercy killing are often raised. Suicide is the intentional taking of one’s own life. This is a drastic step by a severely stressed or depressed person. India has on average 400 suicides a day at present…not something we are proud of, and somehow as a society we need to tackle this problem.

There is actually a continuing conflict between Section 309 of the Indian Penal Code (IPC) that criminalises suicide and the Mental Healthcare Act, 2017 (MHCA), which bars prosecution of a person trying to take their own life under severe mental stress. The Law Commission has twice recommended the repeal of IPC Section 309.  Slightly different is physician-assisted suicide (PAS) where a medical professional assists a patient to end his/her own life, often due to an incurable disease or extreme situations, and this is also illegal in India.

Euthanasia is intentionally causing a person’s death in order to relieve their pain and suffering. There are two broad categories—passive and active euthanasia. Passive euthanasia is where terminally ill patients have treatment withdrawn upon request—for instance the ventilator or feeding pipes are removed, pain relief that also could have the side effect of shortening life may be given. This is practiced in India—legally as of 2011. As Dr.Vijit Cherian (Head of Cardiology, MIOT) clarified, pain medication can be given but it can be challenging to procure opioids outside of oncology centres. Dr.Anjanareiterates that while you are allowed to use pain meds for palliative care there are regulations around use and only on prescription.

In the case of Naresh MarotraoSakhre vs Union of India (1994), J. Lodha took a strong stance against euthanasia calling it: “…nothing but homicide whatever the circumstances…”However, the Aruna Shanbaug case (2011) resulted in a clear direction. The case involved a nurse, who was strangled and sodomized by a sweeper, deprived of oxygen, and left in a vegetative state, kept alive by a feeding tube. Her friend Pinki Virani, a social activist, filed a petition in the Supreme Court arguing that the “continued existence of Aruna is in violation of her right to live in dignity”. The Court rejected the plea but issued a set of broad guidelines legalising passive euthanasia in India. She died of pneumonia after 42 years in a coma.

According to the guidelines, passive euthanasia involves the withdrawing of treatment or food that would allow the patient to live while active euthanasia, includes the administration of lethal compounds. The latter form of euthanasia is illegal in India.

In 2018,the Supreme Court passed another order in the case of Common Cause vs Union of India(2005).Here, the right to die with dignity was once again recognized, passive euthanasia legalized and permission was given to withdraw the life support system of those who are terminally ill and in a life-long coma.  Along with this, the Court also provided the concept of “living wills”. A living will is a document that allows a person to make decisions in advance with regard to what course of treatment he or she wants in case they get seriously ill in the future and become unable to make decisions. Dr.Anjana says: “A Do not Resuscitate (DNR) wish can be and usually is respected. But in  India we are bound by certain laws which do not allow us to switch off ventilators, etc.” Dr.Sharon Krishna Rau (Surgical gastroenterologist) agrees: “Once there is a signed DNR all hospitals and Doctors follow”.

The reference here to ventilators is to the fact that euthanasia although technically legal in India is currently laborious requiring two witnesses, authentication by a judicial magistrate,two medical boards and a collector. One could argue that this defeats the whole purpose which is to end suffering. The worry is clearly misuse of euthanasia. As for whether euthanasia should become easier to administer: Dr Cherianfeels euthanasia can easily be abused due to a lack of adequate regulatory bodies. Dr.Anjana is of a similar view: “In our country hard to say. Better not to legalise it I feel.” Dr.Rekha Cherian (Consultant Radiologist, Medall) also feels it would be abused.

“Mercy-killing” is different and illegal—it refers to active, involuntary or non-voluntary, other-administered euthanasia.  In other words, someone kills a patient without their explicit consent to end the patient’s suffering. 

There are many arguments both for and against euthanasia and PAS. Arguments for are centred around ending suffering and respecting wishes, and those against are that euthanasia is seen as murder and doctors aren’t always capable of recognizing when someone is fit to make the decision plus their Hippocratic Oath is to care not harm. “Death with dignity” is a movement of people who simply don’t want to go through a long dying process.

The legality of euthanasia varies depending on the country. As of November 2021, euthanasia is legal in Belgium, Canada, Colombia,Luxembourg, the Netherlands, New Zealand, Spain and several states of Australia. Before euthanasia become practicable in India, there existed the possibility of signing a Leaving Against Medical Advice (LAMA) which transferred from the physician to the patient the full responsibility for the discontinuation of therapies. 

Physician-assisted suicide is legal in Switzerland so long as the doctor has nothing to gain. In the UK, people often make an advance plan (akin to a living will) or appoint a proxy under the Mental Capacity Act 2005.  In India, Dr.Cherian says some patients do plan, others don’t.

I asked these doctor friends whether death has effectively been hijacked and medicalised to the point where patients are always subjected to a stressful end or is there the option for a patient to go home to die surrounded by those who love them? Dr.Cherian says physicians do give the option of home treatment and terminal care. Commercial model hospitals, however, would push physicians to prolong treatment. Dr.Sharon Krishna Rau says: “Most of us do give the option but it’s very tough on the family to watch the end at home.” Dr.Anjana feels it depends alot on circumstances but people have chosen to go home for a peaceful end.

The UK has a volunteer scheme called Compassionate Carers, where people will go and visit, and help out with terminally ill patients. We don’t yet have such a system. Dr. Rekha Cherianand Dr.Krishna Rau feel this is vitally needed. Dr.Rau does stay for a few hours with her patients, but not many do that. Dr.Rekha explains this is mostly handled by the family in India.“However the family may not always be the best people to handle this. A volunteer group helping out with this would be good.”Another thing one has read is that in the UK families are taught terminal illness caregiver training such that they are brought onto the team and can even administer an injection if needed. This kind of training is also given in India, says Dr.Rekha Cherian, and this is good to hear. 

At the end of the day, the message is: we need to forget the taboos, and talk openly about death. We don’t need to have these difficult conversations often but we do need to do them early and let our loved ones know what we want. We also need to get Powers of attorney in place so that our next of kin can take legal decisions in our place should we be incapacitated. We should write these “living wills” in addition to the traditional wills. They might instruct loved ones to not resuscitate or to prolong life as much as possible. 

Basically, to protect our loved ones, we all need to be really organised and get our affairs in order—have a few tough evenings, discuss every last thing with our family so that they understand exactly what we want done should we be incapacitated or worse tomorrow!  Having discussed it, always commit it to paper with two witnesses for good measure. Then ensure people that need to have copies, and get on with the business of living!

—The writer is a barrister-at-law, Honourable Society of Lincoln’s Inn, UK, and a leading advocate in Chennai. With research assistance by Jumanah Kader


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