Being Mortal: illness, medicine, and what matters in the end.
Profile. 2014
We are all going to die. Hopefully, we will live a long and healthy life first. But the fear is always of a slow, lingering, undignified death. In this deeply moving and thought-provoking book, physician Gawande demonstrates why modern medicine is not set up to cope with the inevitability of death.
Much medicine is about heroic acts that, through strict treatment regimes, violent surgery and toxic drugs, make us better, after we have suffered through the warfare between illness and cure. Death is failure. But people who are nevertheless dying will not get better: medicine offers only the debilitating warfare, with no peaceful recovery after. All pain, no gain. Only failure.
Is there an alternative to the standard end-of-life route of incarceration in a nursing home, made subject to loss of independence and an infantalising regime of “doctor knows best”, accompanied by ever more violent interventions, culminating in dying in a sterile hospital bed while attached to tubes and beeping machines?
Gawande describes his discovery of this alternative: patient-centric palliative care, carefully discovering what the patient wants from their remaining time, and ensuring they get that: time at home, time with family, time to enjoy what time is left, medical care appropriate to that, and, if it is what is wanted, further interventions.
And the consequences of this approach, of providing the patients what they want, of not insisting on providing the fullest medical interventions possible, are possibly counter-intuitive:
[pp177-8] A landmark 2010 study from the Massachusetts General Hospital had even more startling findings. The researchers randomly assigned 151 patients with stage IV lung cancer ... to one of two possible approaches to treatment. Half received usual oncology care. The other half received usual oncology care plus parallel visits with a palliative care specialist. .... The ones in the study discussed with the patients their goals and priorities for if and when their condition worsened. The result: those who saw a palliative care specialist stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives—and they lived 25 percent longer. In other words, our decision making in medicine has failed so spectacularly that we have reached the point of actively inflicting harm on patients rather than confronting the subject of mortality.
[p192] Scholars have posited three stages of medical development that countries go through, paralleling their economic development. In the first stage, when a country is in extreme poverty, most deaths occur in the home because people don’t have access to professional diagnosis and treatment. In the second stage, when a country’s economy develops and its people transition to higher income levels, the greater resources make medical capabilities more widely available. People turn to health care systems when they are ill. At the end of life, they often die in the hospital instead of the home. In the third stage, as a country’s income climbs to the highest levels, people have the means to become concerned about the quality of their lives, even in sickness, and deaths at home actually rise again.
Some may be concerned that allowing people to choose not to undergo medical procedures might lead to people feeling they have to choose this route so as “not to be a burden”. But many of the people Gawande spoke to who had chosen to go the route of more interventions, had done so not because they wanted to, but because of pressure from their families who, understandably, didn’t want them to die.
This is an important book that should be read by all people involved in delivering medical care, all involved in medical policy, and all who will one day be at the end of their own lives.
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