Atul Gawande, surgeon, author and public health researcher, in his recent book Being Mortal: Medicine and What Matters in the End, argues that the reluctance to honestly examine the experience of aging and dying has increased the harm we inflict on people and deny them the basic comforts they most need. “Lacking a coherent view of how people might live successfully all the way to their very end, we have allowed our fates to be controlled by the imperatives of medicine, technology, and strangers.”
Addressing our present day veneration of the independent self he writes that it “takes no account of the reality of what happens in life: sooner or later, independence will become impossible. Serious illness or infirmity will strike. It is as inevitable as sunset. And then a new question arises: If independence is what we live for, what do we do when it can no longer be sustained?”
He claims that the problem with medicine is that they have no view of what makes life significant. Yet it is the medical professionals who largely define how we live in our waning days. We have put our fates in the hands of people valued more for their technical prowess than for their understanding of human needs. We need more than safety and protection in our old age. We need a life of worth and purpose.
In the United States 25 percent of all Medicare spending is for the 5 percent of patients who are in their final year of life, and most of that money goes for care in their last couple of months that is of little apparent benefit. Most patients are unprepared for death and are reluctant to accept that they have a terminal condition. Heroic measures in intensive care units cause a substantially worse quality of life in the last week than for those who received no such interventions. Technological medical care has failed to meet the priorities of dying patients beyond prolonging life.
Dying used to be accepted without fear or self-pity or hope for anything more than the forgiveness of God. Spiritual guides provided families with prayers and questions for the dying. Last words were important. These days death comes after a long medical struggle for technology can sustain our organs until we are well past the point of awareness and coherence. He promotes patients being asked to indicate their answers to four crucial questions:
- Do you want to be resuscitated if your heart stops?
- Do you want aggressive treatments such as intubation and mechanical ventilation?
- Do you want antibiotics?
- Do you want tube or intravenous feeding if you can’t eat on your own?
Palliative care specialists approach end of life care differently from most doctors who try to determine what people want – whether they want chemo or not, whether they want to be resuscitated or not, whether they want hospice or not. They focus on laying out the fact, but that is a mistake. The most important task is to help people negotiate the overwhelming anxiety – about death, suffering, loved ones, finances. Arriving at an acceptance of one’s mortality and a clear understanding of the limits of medicine is a process. Hospice can provide more helpful support than hospitals.
Most patients and their families are filled with doubt and fear and desperation. Some are deluded by the fantasy of what medical science can achieve. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come.
At least two kinds of courage are required in aging and sickness. The first is the courage to confront the reality of mortality – the courage to seek out the truth of what is to be feared and what is to be hoped. The second kind of courage is to act on the truth we find.
In his Epilogue Dr. Gawande writes, “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. And well-being is about the reasons one wishes to be alive. Those reasons matter not just at the end of life, or when debility comes, but all along the way. Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same: What is your understanding of the situation and its potential outcomes? What are your fears and what are your hopes? What are the trade-offs you are willing to make and not willing to make? And what is the course of action that best serves this understanding.”
Sometimes it is better, as he illustrates through his case studies, to do nothing or the minimum because further treatment can make matters worse and cause more harm than help.