Being Mortal: Medicine and What Matters in the End
by Atul Gawande, M.D.
This book is about aging with autonomy and dying with dignity.
“The waning days of our lives are given over to treatments that addle our brains and sap our bodies for a sliver’s chance of benefit. They are spent in institutions—nursing homes and intensive care units—where regimented, anonymous routines cut us of from all the things that matter to us in life. Our reluctance to honestly examine the experience of aging and dying has increased the harm we inflict on people and denied them the basic comforts they most need… What if there are better approaches, right in front of your eyes, waiting to be recognized?”
Aging with Autonomy
“The Three Plagues of nursing home existence: boredom, loneliness, and helplessness.” Bill Thomas, medical director of Chase Memorial Nursing Home, wanted to change the atmosphere from that of an institution to a home by bringing in dogs, cats, and birds for the residents to care for. “Researchers studied the effects of this program over two years, comparing a variety of measures for Chase’s residents with those of residents at another nursing home nearby. Their study found that the number of prescriptions required per resident fell to half that of the control nursing home. Psychotropic drugs for agitation, like Haldol, decreased in particular. The total drug costs fell to just 38 percent of the comparison facility. Deaths fell 15 percent.”
Assisted living offers a middle ground between a nursing home and living alone. One such community called NewBridge “was divided into smaller pods housing no more than sixteen people. Each pod was called a ‘household’ and was meant to function like one. The rooms were all private, and they were built around a common living area with a dining room, kitchen, and activity room—like a home… Research has found that in units with fewer than twenty people there tends to be less anxiety and depression, more socializing and friendship, an increased sense of safety, and more interaction with staff—even in cases when residents have developed dementia. But there was more to the design than just size. The households were built specifically to avoid the feel of a clinical setting.”
Dying with Dignity
“People with serious illness have priorities besides simply prolonging their lives. Surveys find that their top concerns include avoiding suffering, strengthening relationships with family and friends, being mentally aware, not being a burden on others, and achieving a sense that their life is complete. Our system of technological medical care has utterly failed to meet these needs… The question therefore is… how we can build a health care system that will actually help people achieve what’s most important to them at the end of their lives.”
“The difference between standard medical care and hospice is not the difference between treating and doing nothing… The difference is in the priorities. In ordinary medicine, the goal is to extend life. We’ll sacrifice the quality of your existence now—by performing surgery, providing chemotherapy, putting you in intensive care—for the chance of gaining time later. Hospice deploys nurses, doctors, chaplains, and social workers to help people with a fatal illness have the fullest possible lives right now.”
Dr. Gawande explains the value of palliative care. In 2010 researchers at Massachusetts General Hospital studied patients with stage IV lung cancer. The control group received the usual oncology care. “The other half received usual oncology care plus parallel visits with a palliative care specialist. These are specialists in preventing and relieving the suffering of patients… 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.”
Palliative care specialist Susan Block explains, “‘A large part of the task is helping people negotiate the overwhelming anxiety—anxiety about death, anxiety about suffering, anxiety about loved ones, anxiety about finances,’ she explained. ‘There are many worries and real terrors.’”
In the early 1990s in La Crosse, Wisconsin, “local medical leaders headed a systematic campaign to get medical people and patients to discuss end-of-life wishes. Within a few years, it become routine for all patients admitted to a hospital, nursing home, or assisted living facility to sit down with someone experienced in these conversations and complete a multiple-choice form that boiled down to four crucial questions. At this moment in your life, the form asked:
- 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?
By 1996, 85 percent of La Crosse residents who died had a written advanced directive like this… The discussion, not the list, was what mattered most. Discussion had brought La Crosse’s end-of-life costs down to half the national average.”
“We’ve created a multitrillion-dollar edifice for dispensing the medical equivalent of lottery tickets—and have only the rudiments of a system to prepare patients for the near certainty that those tickets will not win… More than 40 percent of oncologists admit to offering treatments that they believe are unlikely to work.”
“Our every impulse is to fight, to die with chemo in our veins or a tube in our throats or fresh sutures in our flesh. The fact that we may be shortening or worsening the time we have left hardly seems to register. We imagine that we can wait until the doctors tell us that there is nothing more we can do. But rarely is there nothing more that doctors can do. They can give toxic drugs of unknown efficacy, operate to try to remove part of the tumor, put in a feeding tube if a person can’t eat: there’s always something. We want these choices. But that doesn’t mean we are eager to make the choice ourselves. Instead, most often, we make no choice at all. We fall back on the default, and the default is: Do Something. Fix Something. Is there any way out of this?”
“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, observers argue, among 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 cause for everlasting shame.”
Gawande, Atul. Being Mortal: Medicine and What Matters in the End. New York: Metropolitan Books, 2014. Buy from Amazon.com.