A 27-member international expert panel warned on Monday that too many people worldwide were dying a “bad death” because families and doctors were overwhelmingly concentrating on postponing death even when inevitable, causing considerable suffering.

Advances in medical science and technology, the proliferation of nuclear families, and the growth of private healthcare in India have contributed to the over-reliance on medical interventions close to the end of life, says M.R. Rajagopal, a palliative care specialist in Thiruvananthapuram and member of the panel, The Lancet Commission on the Value of Death.

The commission published its report on Monday in The Lancet, an international medical journal.

In this interview to The Telegraph, Dr Rajagopal, chair of Pallium India, a non-government organisation promoting palliative and end-of-life care, explains the need for change and the routes towards it.

Q: The Lancet Commission has used the term “bad death” — what exactly does that mean?

Rajagopal: Close to the end of life, when we know that a patient is beyond medical help, nothing can be more horrible or traumatic for the patient and the family than having the patient isolated in an intensive care unit, connected to tubes and medical instruments, and surrounded only by masked doctors and nurses. During these last days or hours, families may get to visit the patient only for a few minutes a day only to watch the patient suffering and in indignity.

This is not how it should be. The last days or hours should be the time the patient and family members spend with each other, exchange words and hugs.

We see bad deaths because a lot of the focus is on using medical tools to block the physiological processes that will lead to death — even when we know death is inevitable.

Q: What is the alternative? Can there be a “good death”?

Rajagopal: In such circumstances, death has to be recognised as inevitable and end-of-life care should be centred on the person, offering relief from pain or other physical symptoms and psychological support.

Such end-of-life care should enable patients to die at their choice of place, whether home or hospital, and to receive appropriate palliative care that would help the patient achieve a peaceful, comfortable and dignified life until death.

Q: Among India’s annual deaths, what proportion receives such appropriate palliative care?

Rajagopal: We believe that only about four per cent of the eligible patients receive appropriate palliative support at some point and for some period during the course of the illness. The proportion that receives such support from the point of eligibility through the process of dying is smaller.

Q: The Lancet Commission urges actions by communities and the medical profession. How have the two contributed to this state of affairs?

Rajagopal: Over the past one or two generations, societies have distanced themselves from the concept of death. Nuclear households have contributed to this change. Deaths aren’t always visible. And death is also not discussed easily: it is viewed as something that has to be defeated, although we know that is not always possible.

Because of the lack of adequate discussions, even when patients face terminal illness, families shop for doctors or hospitals. Caring for the dying should involve infusing meaning into the time left. Whether it is weeks or days, patients and families should use the time to accept the circumstances and use it for what they wish to do. It could be anything — having an outing at a fast-food restaurant or spending time with children or repairing broken relationships. Anything.

Q: And what should be the role of the medical profession in this process?

Rajagopal: An Indian Council of Medical Research document on palliative care, released in 2018, summarises the role of healthcare providers: it is to mitigate suffering. The task of the healthcare providers is to cure sometimes, to relieve often, and to comfort always. There should be no deviation from this principle when a disease is incurable and death is imminent.

Healthcare providers have the duty to improve the quality of life through life and through the dying process. Unfortunately, this is not always practised. Advances in medical technology allow us to prolong the end-of-life phase of dying patients even when it involves intense suffering.

And such opportunities have suited the private healthcare sector. Prolonging life is not bad — but the quality of life has to be reasonable.

Q: Do you see opportunities for change?

Rajagopal: Yes, there is recognition of the need for change — worldwide and within India. The Lancet Commission itself illustrates this. It has brought together experts from health and social science, economics, theology and other fields and proposed recommendations to policymakers, governments, civil society and the healthcare sector.

In India, too, some leading doctors, including some practising in the private sector, are trying to influence medical practice into rendering appropriate end-of-life care. The Medical Council of India introduced end-of-life care into the medical college curriculum in 2019. The process has started but it could go faster.

In India, an estimated 3.9 million deaths — a third of the annual count — involve serious health-related suffering and impaired quality of life.