Time to die with dignity

While the right to live is a given, guaranteed by the Constitution and the legal system, we are still wary of allowing people the right to die a dignified death, especially for terminally ill patients. It’s time we begin moving towards a more humane environment where patients and families decide on their End Of Life Care plan.

Aruna Shanbaug was a smart and sassy 28-year-old nurse at KEM Hospital, Mumbai, engaged to be married to a young neurosurgeon in training. In 1973, a brutal sexual assault and strangulation left her permanently brain damaged. For the next 42 years, she could only breathe and swallow, a condition called the persistent vegetative state (PVS). Sometime in 2010, even her swallowing failed and she needed a feeding tube. In 2011, the Supreme Court of India examined the plea filed by social activist Pinki Virani, asking for her to be allowed to die.

Earlier this year, an Odisha villager, conscious and in full senses but with all four limbs paralysed and with no family to care for him, decided he had had enough, after being bedridden for over 15 years. His petition to the President of India asking to be put to death caught the public eye.

Both these cases are linked by the term “euthanasia”. In Shanbaug’s case this would have meant removing her feeding tube. The Odisha villager was asking to be killed, presumably by a lethal injection.

Euthanasia is a term derived from ancient Greek and means a good death. Towards the end of the First World War, as Germany faced imminent defeat and starvation, German authorities decided to get rid of “useless mouths”, killing dependent patients in asylums by neglect and starvation. They called this “passive euthanasia“ and this abominable euphemism was the beginning of a slippery moral slope.

Between the First and the Second World Wars, a public debate in impoverished Germany discussed active euthanasia. When the Nazis came to power, they actually began putting it into effect — intellectually challenged and paralysed patients were selected by compliant doctors. In fact, the gas chambers of the Jewish holocaust were first tried out on 70,000 such unfortunates. Given this evil baggage, euthanasia is not a preferred term for the complex ethical and medical decisions that are required at the end of human life. We can euthanise animals, not sentient human beings.

Modern medicine recognises patient autonomy as the basic principle of biomedical ethics. It governs patient-doctor relationships in all aspects, including for instance, participation in clinical trials or choices of medical treatment at all stages of life. When the patient cannot exercise her autonomy and choose her own best interests, it is essential to identify surrogates who can do so: Family or designated non-relatives.

So, how does this work?

In many countries patients have the right to spell out their choices for accepting or refusing life-sustaining treatment when terminal illness is diagnosed. They can also identify who (health care power-of-attorney) will make these decisions, together with their doctors, in unclear situations. Some people do this even when they are in good health as Michelle and Barack Obama did during his presidency. These orders only become operative when the patient is unconscious or can no longer make his/her own choices.

These documents are called living wills or advance care plans and many samples are available on the net. Five Wishes is probably the most famous. They are important since modern medical technology can keep bodies alive for long periods even when this is obviously futile. And if there is no one in charge, the default medical option is to do everything possible for cure and to save life. Unfortunately, living wills and health care power of attorney are not legally valid in India. Even though our Constitution gives us political liberty, the Indian legal system has still not managed to extend this to personal autonomy.

In Shanbaug’s case, Justice Markandey Katju accepted that her surrogates were the nurses who had looked after her for over 40 years, and they did not want to withdraw care. She finally passed away in May 2015. PVS is a rare and stable situation where courts can be involved. But these decisions have to be made daily for seriously ill and unstable patients. A point of no return may be reached when further treatment is futile.

Ventilators can be disconnected after adequate discussion and documentation. Done right, this gives everybody clarity and closure. But without a legal framework, this can become a minefield for doctors who are always worried about being challenged by relatives who turn up after the event. India lacks a clear, practical and legally sound process for both living wills and medical futility resolution.

The Odisha villager’s situation exists because the Indian government, at all levels, has abandoned its duty of providing basic healthcare to all citizens. Among the services that are usually missing, is palliative care (PC) a new medical discipline, which looks at relief rather than cure. It is especially important in the last years of life when the focus has to change to the quality rather than the duration of survival. By its very nature, this is not a profitable service that we can look on the private sector to provide and hence it has remained minuscule in India. Kerala is the only state with a community-run but government supported, palliative care network but it too is focused largely on cancer.

All doctors need to be aware of the basic principles of End of Life Care (EOLC) and PC. These are largely absent from medical curricula. Our training focuses only on cure and not the care that is necessary when cure is not possible. Making training in EOLC/PC widely available is a low-tech, low-cost and high impact intervention. Medical associations are coming together to see that this happens and governments need to come forward and support this. But the most important task is to tackle the public stigma around any discussions on death, which seems to be common in other Asian societies as well. The last Japanese emperor, Hirohito, died without knowing that he had cancer.

A good death needs foreknowledge and acceptance. In those countries where EOLC and PC are natural parts of the medical system, discussions with your doctors and trained counsellors begin as soon as terminal illness is identified. The road ahead is spelt out with as much clarity as is possible. Symptoms such as pain, incontinence, depression etc., are managed by PC professionals. Goodbyes, forgiveness and emotional closures with family and loved ones can then happen. Without these a peaceful passing is usually not possible.

The aim is for natural death to occur at home or in surroundings of one’s choice, with minimal or no discomfort and in the midst of loved ones. Some countries have progressed further and permit physician-assisted death/suicide if palliative care no longer suffices.

This usually arises from a citizen-led consensus and needs both a legal system that can handle complex and ethically challenging decisions and a strong sense of respect for the rule of law among all concerned. For India, this is still a bridge too far.

Three Objectives

• Need for public discussion and the naturalisation of death.
• Empowered medical and paramedical professionals trained to provide End Of Life Care/Palliative Care.
• A legal framework to put patients and families in charge of their ends of days.

Santhara
It’s a religious practice among the Jain community for a person to fast unto death. The Rajasthan High Court ruled that the practice should be treated as attempted suicide, which is punishable under law.

Common Beliefs

• Many consider death as a taboo subject.
• Unbearable suffering also has its value.
• Physician assisted death is against the will of God.
• Shows disrespect towards the sanctity of life.

Time to Act

• After the Aruna Shanbaug case, a draft on EOLC was submitted to the Centre but no legislation has been passed.
• Bihar’s Asha Devi and Mukesh Kumar, a farmer, have asked the state to permit mercy killing of their two sons who suffer from muscular dystrophy.

(Dr Roop Gursahani is a Consultant Neurologist at P.D. Hinduja Hospital, Mumbai. He was part of the medical panel advising the Supreme Court in the Aruna Shanbaug case. He is a member of the steering committee of End-of-life-care in India Task Force (ELICIT))