In search of a good death

By Mark Wakefield

Ronnie's Funeral
Much to take care of before we reach our funeral.

Book review: Being Mortal, by Atul Gawande.

I’ve just finished reading Atul Gawande’s Being Mortal. I should declare an interest here, facing as I do my 60th birthday this year and having a close relative undergoing treatment for cancer. It is a sobering, important book that is shocking in its critique of the medical profession’s approach to death, made all the more powerful by the author being Professor of Surgery at Harvard Medical School.

Gawande’s chief concern is with the “medicalisation” of death, a process that identifies death as the great enemy to be denied at every turn, regardless of the cost to the patient. So prevalent is this attitude that, as Gawande makes clear, it’s the patients who are as desperate to deny the inevitability of death as their doctors.

Gawande is eloquent and moving in his account of what is lost when death is medicalised:

“Technological society has forgotten what scholars call ‘the dying role’ and its importance to people as life approaches its end. People want to share memories, pass on wisdoms and keepsakes, settle relationships, establish their legacies, make peace with God, and ensure that those who are left behind will be okay. They want to end their stories on their own terms. This role is, as observers argue, one of life’s most important, for both the dying and those left behind. And if it is, the way we deny people this role, out of obtuseness and neglect, is a cause for everlasting shame. Over and over, we in medicine inflict deep gouges at the end of people’s lives and then stand oblivious to the harm done.”

The book is rich in case study, one of the most moving being that of Gawande’s own father who died of cancer after some very distressing episodes. Gawande is admirably honest about how he too has been guilty of needlessly prolonging life and causing preventable suffering in the process. He characterises doctors as generally being of two kinds, the authoritative expert who effectively tells the patient what treatment they should undergo, and the informant, who treats the patient more as a consumer by outlining all the different options available to them and inviting them to choose. As he says, the latter sounds superficially more attractive, the problem with it being that patients aren’t experts and are therefore generally baffled by the choices offered them. Underlying both broad approaches though, is the assumption that it is in the patient’s interest for their death to be thwarted for as long as possible. Gatawande’s critique of modern medicine carries strong echoes of Iain McGilchrist’s divided brain thesis which charts the triumph of the left brain’s tendency to focus on the individual and specific over that of the right brain which grasps the whole picture.

Through bitter experience and sober reflection, Gawande arrived at a third way, that of effectively facilitating the patient in decision-making. To those of us in the coaching profession, this approach sounds extraordinarily familiar. It proceeds on the basis of asking some simple, open questions such as: “What is your understanding of your current situation; what are your biggest fears and concerns; what goals are most important to you now; and what are the trade-offs you are willing to make and what ones are you not?” By listening carefully to the patient, the coaching doctor (if I may term her that) can then support the patient in making the choices that are right for them. The impact of such an approach as demonstrated in the book can amount to a dramatic improvement in end of life care and the achievement of that goal that we must all wish for – a “good” death.

What is striking about the approach proposed and practised by Gawande is its sheer simplicity. For all the horrors of medicalised death that he documents, one feels that this problem is surely fixable.

The book’s account of the “care” offered to the frail elderly – those who are not facing immediately life-threatening illness but who require round the clock care on account of physical and/or mental infirmity – is still more shocking. As Bill Thomas, one of the heroes of Gatawande’s book observes, the approach to the elderly in such circumstances is to confuse care with “treatment” – in other words to treat nothing more than symptoms with drugs, scans or other “interventions” rather than ask what might promote a measure of independence and make life comfortable, even enjoyable for them. The result, in the nursing home at which Bill Thomas found himself Medical Director at the age of 31, was a place devoid of spirit and energy. The sense of death about the place struck him as being in such stark contrast with the abundance of life on the small holding that he ran with his wife, that he embarked on a bold experiment. By the end of it the home featured one hundred parakeets, four dogs, two cats, a colony of rabbits, and a flock of laying hens. There were hundreds of indoor plants and a thriving flower and vegetable garden.

The effect on the residents was dramatic. All this life provided a focus for the residents and a new sense of purpose – dogs needed walking, animals needed feeding, the garden needed tending. Even those residents with the most severe forms of dementia, such that they had lost any grip on what was going on, seemed to enjoy a new lease of life. A comparison with conventionally run nursing homes showed that Thomas’ home required half the number of drugs and that deaths fell by 15%.

It comes as no surprise that Thomas was, and remains, an outsider. An unruly student from a humble background, he excelled at his undistinguished college sufficiently to get into Harvard Medical School. No seeker of fame and fortune for all his academic achievement, he decided to work with the elderly in part because it afforded him more time for his wife and small holding, which he runs on the principles of self-sufficiency. His strong sense of purpose and accompanying values gave him the energy and commitment to overcome both initial resistance on the part of nursing home staff and major regulatory obstacles.

As my colleague, Martin Vogel, observed in a recent blog post, the managerialist creed that dominates both the public and private sectors can only be countered by organisations aligning themselves with the values of those that work for them, rather than vice-versa. Inspiring as Bill Thomas’ story is, it’s hard not to conclude that, if change is to come about in the medical profession as much as in business, we will need a radically different approach to running organisations. As Frederic Laloux has cogently argued, this should put a measure of real power and autonomy in the hands of as many people as possible.

Image courtesy Felipe Neves.