What Book to Read?

Being Mortal (2014) is a blend of memoir, research and comment, with a number of case studies which Gawande uses to make his point. The book’s subtitle, Illness, Medicine and What Happens in the End is a useful summary of the contents of the book but doesn’t give any clue to the emotional weight it carries, dealing as it does with death – which in this context is inevitably a reminder of one’s own death.

Gawande bases the book partly on his own experience as a surgeon. He says he learned little about aging or death in his medical course; learning how to deal with the problems of old age and dying had to be learnt first by experience and then by personal research. Thus he also draws on his experience as a son, and son-in-law. His parents, both medical doctors, migrated to America from India, so he never knew his grandparents. The first old person he really came to know was his wife’s grandmother, Alice. Over the course of the book, both Alice and his father get sick and die. This lived experience on his part adds considerable emotional depth to what otherwise might have been a colder, technical discussion.

Gawande is concerned with two related issues: the institutionalisation of the aged, and the medicalisation of death. He understands why families are no longer willing or able to look after their aging relatives, and indeed why aging relatives often seek independence from their children. But he abhors the regimentation many institutions impose on old people, supposedly for their own safety but often for institutional convenience; it saps purpose and hope from old people’s lives. Through several case studies, including that of Alice, he looks at some of the attempts to humanise institutions or find alternatives to institutional care, such as assisted living facilities. This latter was an attempt to meet the needs of old people for independence, rather than subjecting them to regimentation, even if it kept them safe. Though initially successful, he admits that with the proliferation of assisted living facilities, the concept has been weakened, and regimentation, being cheaper, has crept back in.

But no matter how independent old people are able to be, there comes a time when illness, or failing health due to old age, shunt us into the medical system. Where once people died at home, without much medical intervention, they now (at least in the Western world) mostly die in hospital after sometimes lengthy medical intervention has run its course. At what point is hospital necessary? And more importantly, how should doctors treat people who are near death but not yet terminal? This is perhaps even more of a problem for younger people with terminal diseases than for older people, as one of Gawande’s case studies shows. He argues that doctors are trained to solve medical problems, so favour treatment options which may prolong life, even if they reduce quality of life. He considers that medical professionals are very good at offering options for treatment, but very bad at explaining to patients and their families the options for not treating. He acknowledges it can be very difficult to decide when treatment does not offer reasonable hope. Even when patients have specified they don’t want to be resuscitated, the decision to withdraw treatment can be difficult and relatives often press doctors for further procedures against the patient’s wishes, such is the faith in medical science.

While he does not suggest there are easy solutions to such dilemmas, Gawande, from his own experience and research, advocates home hospice care for people who are terminally ill. Hospice care – called palliative care in Australia –  involves provision of pain relief or other medication to ease suffering, but not usually other forms of treatment. But the first step is to find out what the patient really wants, which in turn involves talking about their death. What is important to them? Is being with family and friends more important than living a little longer in hospital? Gawande touches briefly on euthanasia, which is legal in three American states, concluding that while people are comforted by knowing it is available, few use it. He clearly prefers the home hospice alternative, and studies have shown that people may in fact live longer using it than they would have in hospital. His case studies, however, including that of his father, show that no option works smoothly, without pain to the patient or their relatives and friends.

I noted that all the case studies Gawande uses are of people with loving families or concerned friends. Spouses are willing to help their terminally ill partners with daily routines and to make accommodations to all their needs. But what of those without such support of whom there must be many? Furthermore, few people can afford to pay for the personal home care old and frail people require. Institutional care may be their only option. It is not clear in the book how care or treatment is paid for. Most of the forms of care Gawande describes are private, though some appear to be state-subsidised. Indeed, how Gawande has dealt with funding is the only issue on which his book disappointed me. He does acknowledge that being well off means being able to afford better care both in terms of accommodation and medical treatment. But the vast discrepancy in health care between the rich and the poor in America is not discussed, and nor is the growing disparity between the life expectancy of rich and poor Americans.

Gawande’s plea that we think about our own deaths, and discuss our wishes with family and friends is relevant to everyone. But it is particularly relevant to older people like me. I found Gawande’s perfectly correct insistence that old people get ill and die a bit depressing, though challenging. Would what seems like common sense – that quality of life and imminent death are preferable to longer life but extended suffering – look the same when the choice has to be made? But there is also hope in the book that we can retain our right to choose the best death possible.

You can read more about Gawande’s writing, surgery and research here on his web-site.