ICON’s Dr David Eedes reviews the fascinating new book by Atul Gawande that delves into some of medicines most difficult ethical questions – including the dangers of confusing care with treatment in end-of-life patients.
In Being Mortal, he interweaves the stories of patients, friends and family with the reality that over the last 50 years more people are living into old age and often without the support of the traditional extended family and community. This combination has resulted in increasing numbers of the elderly spending their last days in hospitals and ICUs geared to treat and keep people alive.
Modern medicine is primed to fix even that which is unfixable: we mortals fear debility and death. In an attempt to extend life at all costs, unnecessary suffering is inflicted and personal finances and healthcare budgets are being crippled. As Gawande says, “We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really, it is larger than that. It is to enable well-being.”
Chapters dealing with ‘The Independent Self’, ‘Things Fall Apart’, ‘Dependence’ and ‘Assistance‘, among others, are beautifully illustrated and leavened by stories of the people he has known personally or professionally. Sara’s story of an ageing father who gradually, but inexorably, begins to lose his ability to manage alone, her struggles taking care of him, his frustration at the loss of his independence and faculties, and the path from assisted living, to nursing home, to full care is one that will be familiar to many.
The role of nursing homes, assisted living and hospice care for managing the ageing and terminally ill is well covered. The fact that nursing homes ‘just don’t feel like home’ inspired the concept of assisted or integrated living in the late 70s in the US. Gawande shows that their initial noble goals – the alleviation of boredom, loneliness and isolation and the feeling of helplessness – are soon overtaken by political correctness, the fear of litigation and greed.
In the chapter, ‘A Better Life’ Gawande explores some interesting studies where, using simple measures: three square meals a day, reporting falls and adjusting medications dramatically reduced the amount of time the elderly spent in hospital, thereby improving the quality of the last period of their lives. These interventions are not the revenue generator that actively treating patients is, and so has meant that the fields of gerontology and geriatric medicine in the US are unpopular, underfunded and understaffed. “Those of us in medicine don’t help, for we often regard the patient on the downhill as uninteresting, unless he or she has a discrete problem we can fix.”
Even though there have been a number of clinical trials showing that stopping futile treatments in cancer patients when previous lines of treatment have failed, together with the early institution of palliative care, results in patients who live both a better quality and, more surprisingly, a longer life. That this is not something frequently discussed with our patient’s shows what happens when we confuse care with treatment.
The chapter titled ‘Hard Conversations’ cuts to the heart of this matter and is an important primer for all of us in the healthcare profession. Here, the author deals with those candid discussions that are difficult for both patient and caregiver alike, but crucial to ensuring that illusions are removed and achievable goals are looked at realistically and compassionately. If this discussion is left too late, it often results in our patients and their families being unprepared and left feeling short-changed at the end. The book gives some excellent pointers for negotiating this crucial interaction.
Surveys have shown that patients with serious illnesses are concerned about more than just prolonging their lives. Their priorities include avoiding suffering, mental alertness, improving relationships with family and friends, not being a burden and feeling that their lives have not been a waste of time. “Endings matter,” says Gawande. The current system of high-tech medical care is failing our patients in meeting these needs, and the cost of this failure is enormous, not just financially, but also in the unnecessary suffering caused. This poses the question: how can we rebuild the current healthcare system to help our patients achieve what they believe is important to them? It is beyond the remit of this book to answer this complex question, but Gawande does give a personal account of how, by researching this book, his approach to patients changed.
He movingly charts his own journey from being an ‘informative’ to an ‘interpretive’ doctor: from one who merely enumerates treatment options, often when this risks doing harm with little hope of benefit, to one who assists patients in managing the latter stages of their lives in a way that is meaningful to them. This interpretive approach does require spending the time to learn what the patient’s goals are, understanding what risks and trade-offs they are prepared to accept in exchange for their independence, comfort and dignity, and then assisting them in realising this. “I never expected that among the most meaningful experiences I’d have as a doctor – and, really, as a human being – would come from helping others deal with what medicine cannot do, as well as what it can,” he writes.
Gawande briefly discusses euthanasia or assisted suicide. His arguments are difficult to follow with confusing vacillations, indicating how difficult this subject is for many of us. “The debate is about what mistakes we fear most — the mistake of prolonging suffering or the mistake of shortening valued life,” he says. In his critique of the end-of-life policy in Holland, he questions the reason that so many Dutch people seek assisted suicide and asks whether it is “a measure of failure. Our ultimate goal, after all, is not a good death but a good life to the very end.” Cicely Saunders, the physician-nurse founder of hospice care in the 1950s, repeatedly asserted: “Last days need not be lost days.” He wonders whether the slow development of Dutch palliative care is a cause or an effect of their assisted death programme. He later contradicts himself to some extent by saying that he is ‘pro-choice’.
In the last chapter titled ‘Courage’ Gawande looks at our personal responsibility in planning ahead for our inevitable ageing and death. He points out the courage it takes both to confront this reality as well as to act on it. The truth is that if we do not do it, it will be left to others to take those decisions on our behalf and with that the last vestige of our independence. It is up to us to ensure our last days are more comfortable and meaningful. As this thought-provoking book shows, it is our dignity and humanity that matter in the end.
 Temel J.S, Greer J.A, Muzikansky A, Gallagher E.R. Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer. N Engl J Med 2010;363:733-42.
Publisher: Wellcome Collection
Number of pages: 282 pp.
Book price: R251