When Atul Gawande’s father became seriously ill, the family was hardly short of medical knowledge. Father and son were surgeons; Gawande’s mother was a pediatrician. Yet an oncologist’s list of eight treatment options left them uncertain about what to do. Recalling the consultation in an interview about the book, Gawande described a problem their qualifications had not solved: what would these options actually mean for his father’s life?
That is a more unsettling difficulty than simply not understanding the medicine. If three doctors can struggle to choose, supplying more information cannot be the whole answer. How much time a treatment might buy matters enormously. So does what that time would be like, and whether it would leave room for anything the patient still hoped to do.
Published in 2014, Being Mortal combines a surgeon’s investigation of aging and care with his experience as a son. It does not remain at the deathbed. Gawande visits care facilities and listens to older people, relatives, and caregivers, asking why someone can receive attentive care while losing almost every say in the shape of a day.
He includes himself among those who need to answer. In the introduction, he recalls reading Tolstoy’s The Death of Ivan Ilyich in medical school. The students thought they would never be as indifferent to a patient’s fears as the doctors in the story. They worried about acquiring clinical competence; kindness seemed something they already possessed. Working with patients would expose the distance between meaning well and knowing how to help someone who was dying.
Who should make the decision?
A doctor who decides for a patient may overlook what the patient wants. But is it enough to explain the options and then say that the choice is theirs? Gawande encountered the limits of that approach both at work and in his family. People seek more than a packet of information. They also want help understanding where the different choices might lead.
The possible benefits, the burdens, and the remaining uncertainties all need to be explained as clearly as possible. Suppose, for instance, that a patient’s overriding hope is to attend their child’s wedding. Time in hospital and the prospects of recovery now bear on a particular occasion, not just an abstract outcome. The same treatment information raises different questions when it enters different lives.
Gawande’s father wanted to remain in touch with friends and family, keep his mind clear, and spend as much time as he could at home. He underwent surgery and radiation therapy and later received hospice care. His story does not fit the reassuring formula in which a person accepts death and therefore stops seeking treatment. He had accepted substantial intervention. As his condition changed, the family had to keep asking whether the available care could still protect something he valued.
Even the familiar promise to do everything possible needs some explanation. A doctor may mean continuing the search for another treatment. An adult child may mean avoiding the regret of having done too little. The patient may be most afraid of never going home again. These people can love one another and still be trying to secure different things. Unless those differences become part of the conversation, considerable effort may take them in incompatible directions.
Listening, however, cannot be a way of steering everyone toward the same answer. Some people accept serious risks for a chance of living longer. Others place more weight on comfort and time with those close to them. Reading a book about the end of life should not persuade us that the second choice is necessarily wiser or more courageous. Doctors need to understand patients’ wishes while explaining what medicine can and cannot offer. Replacing medical paternalism with a supposedly enlightened attitude toward death would still mean deciding for someone else.
Having something to care about
The habit of arranging other people’s lives reaches well beyond major treatment decisions. In a nursing home, getting up, eating, and having some private space can all depend on institutional rules. Coordinating care is unavoidable. But if coordination leaves residents with nothing except a timetable to obey, being looked after can become an endless wait for the next instruction.
Gawande describes changes introduced by the physician Bill Thomas at a nursing home in upstate New York. Activities were already available, yet Thomas thought the place lacked life. He brought in plants, cats, dogs, and birds. Some residents began tending plants or naming birds; others wanted to take a dog for a walk. People accustomed to receiving care had something they could care about and take part in themselves.
It is easy to turn this into a heartwarming story about pets cheering up older people. There is another distinction worth noticing, though. Attending an activity is not quite the same as having something on your mind. Once a session ends, staff can put its materials away. A plant you are tending continues to grow. Checking it tomorrow may seem a small matter to someone else, but it gives you a reason of your own to return.
That does not mean every nursing home should acquire animals and plants, or that every resident needs a useful job. Some people are afraid of dogs. Some dislike bustle. Others simply want to sit quietly. If a new program requires everyone to participate enthusiastically, an institution may merely have exchanged one obligation for another: yesterday the resident had to be compliant; today they have to be cheerful and productive. There may be no more room for the person in either arrangement.
Nor can safety be dismissed. When an older person falls, the injury is theirs, but relatives and caregivers also bear worry and additional work. Staff may hesitate to relax a rule because they will be held responsible if something goes wrong. It is unfair to call every such concern an appetite for control. The difficulty is that risk must be taken seriously without making risk reduction an automatic reason to end the discussion.
An Amazon reader posting as Pamela J.H. supports the book’s direction while raising an important question: in asking what people value, might we quietly begin telling them what they ought to value? Someone may accept a degree of risk to keep a familiar way of life. Someone else, especially after an accident, may actively prefer more protection. Respecting choice has to accommodate both wishes, including a person’s right to change their mind.
Making a piano lesson possible
Keeping hold of a familiar life may depend on skilled care. One of the people Gawande writes about was a piano teacher who, with that help, found her way back to her students.
Peggy Bachelder taught Gawande’s daughter and had advanced cancer. In a later interview, he returned to the experience recounted in his book. After she went home on hospice, a nurse helped arrange everyday care and manage pain and other symptoms. As things became more manageable, she wanted to teach again. His daughter resumed lessons for a time, and there was eventually a recital.
Making those lessons possible required more than encouragement. Care had to keep the pain bearable while helping her remain alert enough to teach; the arrangements for daily living mattered too. Professional knowledge had not withdrawn. It was being used in the service of something she still wanted to do. The student was having a piano lesson. The teacher was also sustaining a connection with a world she knew.
Hospice does not mean removing all medical care, and it is not euthanasia. Professionals continue to relieve suffering and support patients and families. Palliative care, the broader field, need not wait until the final days of life and can be provided alongside treatment directed at the disease. To describe all of this as merely waiting because nothing more can be done is to miss how much care can still accomplish when a cure is no longer possible.
The piano teacher’s story matters because those lessons meant something to her, not because she worked while ill and left other people with more to remember. The distinction is essential. Another person may no longer want to work or receive visitors, preferring less pain and quiet company. That is not an inferior way to live. Producing an inspiring final chapter is never a patient’s duty.
What good intentions cannot provide
One strength of Being Mortal is its ability to bring large questions about life and death into particular lives. It takes readers into difficult conversations and reveals the fears beneath apparently irreconcilable family disagreements. A doctor admitting that he did not know how to speak, or a son acknowledging his own uncertainty, offers something more useful than hindsight’s verdict on who was right.
But the more moving a story becomes, the more important it is to ask what made it possible. The piano teacher’s return to teaching depended on professional care. Someone hoping to remain at home may need help with ordinary routines and sudden emergencies. When relatives live far away, or cannot leave their jobs, discovering a person’s wishes and fulfilling them can be very different achievements.
This is one concern raised in the reader reviews consulted for this introduction. On Goodreads, Debbie wanted fuller attention to costs and insurance. On Amazon, a reader posting as Dr. Mary Gresham discussed the need for more care options for older people who have no relatives able to look after them. A few individual reviews cannot establish a consensus. They do, however, identify a useful limit: a book that helps people begin a conversation does not thereby provide an answer for every family’s circumstances.
Many of these accounts take place in the United States. Their institutions, services, and payment arrangements cannot simply be transferred elsewhere. Readers can use the book to think afresh about their own situation without being expected to reproduce its outcomes. Access to professional help, the division of care work, and the possibility of rest for caregivers all affect whether a wish can be fulfilled. Where those conditions are missing, repeated appeals for greater patience may do little beyond adding guilt.
Reading the book will not necessarily make death less frightening, either. Debbie says she had hoped for reassurance but came away more anxious. Other readers who encountered it while accompanying a relative through illness found it helpful. Both responses make sense. One person gains language for a situation already unfolding; another begins to see, in painful detail, what might lie ahead. The book offers substantial questions about aging and care, not a guarantee of comfort.
The mainland Chinese title, The Best Farewell, should therefore not be understood as a standard that every family must meet. People can remain frightened. They can reconsider. Relatives can talk things through repeatedly and still feel overwhelmed when the moment arrives. Readers need not use the book to reproach themselves for decisions already made.
What is worth carrying forward is a more modest possibility. While there is time to ask, a conversation need not concern only the next treatment. It can also ask what this particular person has been thinking about, hoping for, or missing. Sometimes the answer helps with a major decision; sometimes it makes today a little more bearable. If the person’s health or circumstances change, the question can be asked again. We cannot arrange another person’s last days in advance. We can try to ensure that needing help does not also mean losing every chance to say how they want to live.