…About Death and Dying. This is the challenge laid down by Atul Gawande in his latest book, On Being Mortal. Gawande wants individuals, physicians and the health care industry to engage in a serious discussion about the ways in which we deal with human mortality and the ways in which old assumptions and timidity lead us to make harmful choices. His primary objective is in assisting all of us to develop a realistic approach to our mortality and to better understand the rather complex decisions about when and how to sustain our lives through marvelous medical technologies. He believes that the focus of the individual, working with family and a medical team, should be on improving the quality of the life that remains, a result that may be achieved by rejecting rather than madly pursuing dubious cures and expensive treatments that produce only short term results. He wants us to accept limits, both of the recuperative powers of the body and the efficacy of medical technology.
He’s mindful that as a nation we spend one quarter of our health dollars sustaining life for 5% of the population, often during the last two or three months of individual life. A fairer distribution of finite resources, especially at a time when the American population is getting older, may well result in healthier and wiser young people who will be less demanding of the system as they age.
Gawande is a public health researcher whose articles frequently appear in The New Yorker. His work is thought provoking. For instance, in “The Hot Spotters,” a 2011 article, he examined how public health officials in Camden, New Jersey responded to the discovery that 1% of the city’s population accounted for 33% of the city’s medical bills. Their targeted, coordinated approach to the city’s neediest citizens resulted in fewer costly emergency room visits and better health outcomes.
Gawande is also a surgeon at Women’s and Brigham Hospital in Boston and a professor at Harvard Medical School. He’s the son of a doctor who was born in rural India and came to the US for medical school, eventually establishing a practice as a urologist in Athens, Ohio. He fully realizes that the extended family support that his 100 year old Indian grandfather received is a far cry from the conditions of most modern American families. More than half of the senior citizens in this country live alone, often without immediate family in close proximity. This remarkable change in the fortunes of his family is matched by the revolution in drugs and technologies, one that he has witnessed from the time that he entered medical school in the mid-80s. Prior to mid-20th century contracting a virus or having a bad fall might result in imminent death, often before the age of 50; today these same episodes are seen as minor setbacks in a life that may well last beyond 80. The arc of most lives today is not marked by one precipitous fall but rather by a series of graduated downward steps.
In reading Gawande, one cannot help but think about the attention, or lack thereof, that we have given to our old age and the days and weeks before our deaths. Gawande is not the first one to say that a youth-worshipping American culture avoids or denies the inevitability of death. As a result, terminally-ill individuals are ill-prepared for end of life decisions. Although we include “do not resuscitate” provisions into our wills, we hardly ever think more deeply about how we and our families might insure that we can die on our own terms, with dignity and autonomy. When the crisis comes, well-intentioned family members, choosing to sustain life at whatever cost, often act against the intentions of their loved ones who may be in too much pain to think clearly.
The same dilemmas about end-of-life mark the early detection of potentially life-ending diseases like cancer. Gawande, a wonderful storyteller, uses the approach to his father’s cancer as an example of wise decision making. Diagnosed with an impossible to excise tumor on his upper spine, his father, in full consultation with wife and son, makes a decision not to have an operation, despite the advice of a noted specialist to do so. The decision proves to be a good one: it takes another four years for the debilitating effects of the cancer to appear. His fine motor skills compromised, he ends his career as surgeon and throws himself into his work for Rotary International. He is elected the Director General of the state and spends his time driving around speaking to the chapters. Through the support of his wife and a team of caretakers, he lives long enough to see his son deliver the Commencement Address at Ohio University in his home town. The last section of the book is a moving account of the last days of his father’s life.
The father’s life is an example of his adaptability, but it’s also a case study how an individual and his family strive to provide a meaningful and purposeful final months and years. The sensitive physician son, observing the productive bedside manner of adept gerontologists, assists his father in determining what is of value to him. In another case study that Gawande reports on, the individual expresses simple needs: what is of value to him is the ability to eat ice cream and watch football on TV. These expressions of individual desire should be the starting point for a care program. Better one year enjoying simple pleasures and the company of friends and family than three years of pain inflicted not only by the breakdown of the body but also by the agonies which accompany surgeries and medications, some of which are only marginally successful.
Despite an aging population, fewer physicians are going into gerontology which is associated with a smaller paycheck than other specialtist and with a difficult and demanding clientele. Gawande turns his attention to the army of specialists (oncologists, gastroenterologists, cardiologists) to get them to think about embracing a different model of practice. He classifies physicians into three categories: the authoritative, the informative, and the interpretive. The heroic, authoritative physicians prescribe treatments that they know will work and expect the patient to obediently follow the advice. Most follow into the second category: they “objectively” present loads of information and multiple options and let the frequently confused patient and family to make a decision. Gawande believes that this approach, though preferable to the authoritative, still leaves something to be desired. The third approach, the interpretive, requires physicians to spend time to learn about what the patient most fears, desires, and values and to use this information to create collaboratively the best treatment plan that will insure dignity and create a sense of autonomy.
Gawande is not just interested in our approach to aging and death in the final months. He writes knowledgeably about the revolution in our approach to “the retirement years,” and the transitions from independent living to assisted living to nursing care. Good nutrition, workplace safety rules, and sophisticated medicines have increased longevity to a point unimaginable 100 years ago. While a small percentage of the population at the turn of the last century lived into their 80s, those that did were at the mercy of their families and, if the family couldn’t respond, were sent off to “almshouses.” Social Security, a product of the Great Depression, helped ease the transition into old age. But it was the articulation of the idea of the continuum of care for the elderly that has made a profound difference. It’s hard to imagine as we drive around the suburbs and see an assisted living facility every few miles that these familiar places on the landscape have only existed for a little more than 25 years.
Gawande provides numerous examples of “best practices” in our approach to living once the children are gone and maintaining a home becomes too difficult. He’s painfully aware that there are many places that just warehouse the aging and infirmed. These are the institutions that in their desire for safety, predictability, efficiency, and profit, restrict the freedom of the residences, bending all to a uniform treatment plan. Fortunately there are other places, some of which are “franchise” operations, which elevate their client’s desire for meaning and purposefulness above these other goals. One founder of a community in upstate New York has opened the placed to animals; the dogs and cats and even birds are sources of joy, companionship, and responsibility for the residents. Another group has rejected the long corridor building design in favor of pods in which no more than 15 or 20 residents eat and recreate.
The advent of hospice care has also made a difference in the lives of many. Hospice has reversed the 20th century trend where more and more individuals died in hospitals rather than at home. Gawande has great admiration for the hospice worker who provides palliative care and coordinates the services of physicians and social workers. My mother was diagnosed with pancreatic cancer in June of 1995 and died six months later, the usual time span from discovery to death. She rejected a chemotherapy regiment that might have extended her life another few months. Over the last month she had hospice care and, with the help of the specialist and her children, was able to administer the morphine that reduced her pain. Though hardly a pain-free death, it was the best passage-to-death possible, and I became an advocate for hospice.
Gawande is encouraged by an experiment that produced better health outcomes at a smaller price. In the study one group was provided both hospice care and hospital care. The 2nd group did not have complementary hospice care. It turned out that those with the hospice option used fewer hospital-based services than the second group, resulting in greater over-all savings. In On Being Mortal and many of his other reflections on the state of US medicine, Gawande’s mission is to bring these successful experiments to the attention of the general public and the medical community, hoping they will be duplicated across the country.
This is a book that should be of interest to all mortal Americans (and that means all of us). If the number of gerontologists remains the same while the number of elderly increases as a percentage of the population, all of us, whether 25 or 85, may have to become our own gerontologists. On Being Mortal pushes us in that direction.