Book review

Being Mortal: What matters is not how we live but how we die

Writer and surgeon Atul Gawande’s book about medical care in life’s final years asks that we demand more of our doctors.

As a student of medicine, Atul Gawande read a paper by medical ethicists Ezekiel and Linda Emanuel about the kinds of relationships a young clinician can have with his patients. There is the traditional paternalistic kind in which Dr Knows Best makes the critical decisions for his patients and demands obedience. There is the kind in which Dr Informative lays out all the facts and treatment options, and his patients make the decisions about the risks they’re willing to take. Finally, there is the interpretive kind in which the doctor shares information but also has to figure out what his patients want ‒ what their worries and priorities are, what is most important to them ‒ and ensure that decision-making is shared.

When Gawande re-read this essay years later as a practicing surgeon, he realised he was always most comfortable as Dr Informative. In a way, his new book, Being Mortal: Medicine and What Matters in the End charts his evolution from Dr Informative to Dr Interpretive as he lives through his father’s terminal illness. The book’s ambition is greater though ‒ to look at the systems of care available to the elderly and the terminally ill and ask how we want to live when we know we’re going to die.

His father's tumour

It’s a terrifying question for anyone to grapple with, especially someone whose father has a rare, incurable tumour growing inside his spine that threatens to make him quadriplegic. But Gawande Senior’s empathetic surgeon understands his patient’s fears about the loss of physical autonomy, and they arrive at a course of treatment jointly based on the patient’s goals for the rest of his life.

The surgery they plan goes off well but the radiation therapy that follows is unsuccessful. Once, after a fall that leaves him immobilised for hours, Gawande’s father calls his son, helpless with fear. Gawande then decides to have “the hard conversation” with his dad, taking a cue from palliative care specialists who do this on a regular basis with their patients.

The son asks the father: What trade-offs are you willing to make to stop what is happening to you? The father responds: Anything, death even, but not crippling quadriplegia. This guides his treatment, which eventually becomes hospice care at home; by this time he is wheelchair-bound. “[My father] found that in the narrow space of possibility that his awful tumor had left for him there was still room to live,” Gawande writes. This without the terrible side-effects of radiation or chemotherapy and with the help of a nurse and pain medications, that is, with the least amount of suffering.

Authoring the rest of life

A different kind of care, no, a different kind of medicine should make this possible, Gawande insists. Life is not a lottery ticket that doctors can help their patients win by trying all the treatments possible. They must instead help their patients find a medical solution which allows them to be the authors of the rest of lives, however dismal the circumstances.

In Gawande’s own story and those of his patients are lessons in empathy, not only for doctors but for patients and their families too. In a country like India, where doctors are thought of as demi-gods, can we expect such nuance and self-reflexivity? Well, I certainly think we shouldn’t limit our expectations.

Apart from doctor-patient relationships, Being Mortal is also about the institutions of care that exist for those at the ends of their lives. Gawande traces a history of elder care in the States, from old-age homes or “almshouses” in the first half of the twentieth century to hospitals and penitentiary-like nursing homes today. He profiles happier alternatives like assisted living facilities ‒ intermediates between living on your own and in nursing homes ‒ where elders can find privacy and autonomy as well as medical care, even for severe debilities.

Care for the elderly

While reading the book, I couldn’t help but wonder about our own systems of care for the elderly. Surely, the joint family system has nurtured many in their old age and Gawande speaks nostalgically of his own grandfather who lived till 110 surrounded by different generations of his loving family in a Maharashtrian village. With the joint family in India slowly disintegrating, one can safely say that the circumstances in which the elderly live have changed.

According to the National Family Heath Survey (NFHS-2, 1999-2000), approximately 89% of elders in India live with their families, which include spouses, children, children’s spouses and grandchildren. However, an article in the Global Journal of Medicine and Public Health says that increased mobility of people from rural to urban areas has contributed to the scattering of joint families and as a result, the draining of the family’s common financial pool. This has affected elder care and cases of elder abuse are on the rise.

Gawande draws a grim picture of precisely one such eventuality. On a visit to a charity-run old-age home in a slum in south Delhi, he sees residents who are poor, have mild to severe debilities, and have been dumped there by retirement homes or hospitals because they can’t pay the bills. One man was abandoned in the hospital by his well-to-do family after a series of strokes and paralysis. Perhaps bearing the cost of his treatment for two-and-a-half months was too much to ask.

While the affluent can afford to put up their old parents in care facilities that are now gaining acceptance, what of the urban and rural poor who cannot rely on public healthcare like their counterparts in the industrialised world? Many are forced to work despite poor health in their old age, says S Irudaya Rajan, a scholar on ageing in India. NFHS-2 puts the number at 63% of males and 58% of females above the age of 60, and 22% of males and 17% of females above the age of 80. The reason? “The lack of proper social security safety nets and high levels of poverty.”

Apart from these economic disparities, there are geographical ones too, the most prominent one being the urban-rural divide. There is a huge gap in the kind of geriatric care one can get in urban areas as compared to rural ones. Most geriatric care centres are only in tertiary hospitals in urban areas, and elders most often end up being seen by doctors trained in internal medicine. In a country where the extended family‒ the emotional and financial backbone of the aged ‒ is crumbling and the government spends only about 1 per cent of its GDP on public health, where must the ageing population turn?

If there’s one fundamental thing that Being Mortal tells us, it is that we must demand a healthcare system that is empathetic to our needs. While Gawande’s aim is to critique his own profession’s attitude towards the elderly and the terminally ill, he also deliberates on what he and his fellow doctors can do to make the care they provide better. We, in our turn, can learn how to more sensitively deal with our ageing parents or be better doctors and nurses. We can remind ourselves, as Gawande reminds doctors, that despite all the advancements in medicine, ensuring survival shouldn’t be the only goal. What matters in the end is not how we die but how we live.

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