The goal is not to have a good death. The goal is to have as good a life as possible all the way to the very end.
—Atul Gawande, MD, MPH
“I learned a lot of things in medical school, but mortality wasn’t one of them,” writes Atul Gawande, MD, MPH, in his new book on the medicalization of aging and dying, Being Mortal: Medicine and What Matters in the End (Metropolitan Books, 2014). In the book, Dr. Gawande critiques the American medical system and shows how it is so focused on battling death, that when a patient dies, it is viewed as a failure rather than a normal occurrence of life. In addition, he describes his own inadequacy in confronting the subject of death with his patients.
“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. 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,” writes Dr. Gawande.
Being Mortal includes detailed accounts of the experiences of the ill and dying, including the story of Dr. Gawande’s father, Atmaram Gawande, MD, who had an inoperable cervical spinal cord tumor but remained determined to live life as fully as possible all the way to the end. (A review of Being Mortal was published in the December 1, 2014, issue of The ASCO Post [volume 5, issue 19] and is available online at www.ascopost.com.)
Dr. Gawande is a surgeon at Brigham and Women’s Hospital, Professor in the Department of Health Policy and Management at the Harvard School of Public Health, and Professor in the Department of Surgery at Harvard Medical School. He is also a staff writer for The New Yorker magazine and the author of three other best-selling books: Complications: A Surgeon’s Notes on an Imperfect Science (Metropolitan Books, 2002), Better: A Surgeon’s Notes on Performance (Picador, 2007), and The Checklist Manifesto: How to Get Things Right (Metropolitan Books, 2009).
In a wide-ranging interview with The ASCO Post, Dr. Gawande talked about how his research for Being Mortal led to changes in his medical practice, the controversy of physician-assisted suicide, and the definition of a good death.
We Often Miss the Big Picture
You have said that you weren’t always effective in situations in which you had no more reasonable treatments to offer your terminally ill cancer patients and that you didn’t know how to break bad news to patients. What have you learned since researching Being Mortal?
I realized that we in medicine haven’t fully recognized that people have priorities besides just living longer. Their priorities might be to remain cognitively intact or to spend more time at home vs in the hospital or even just to be able to take care of their dog. We are so used to focusing on what we consider our technical successes—do we extend life and survival, do we reduce complications—that we often miss the big picture.
Another thing I learned is that the most effective way to find out what people’s priorities and goals are for the end of their lives is simply to ask them. And, according to data from studies of patients with advanced cancer, we have those discussions less than one-third of the time.
There are a lot of different reasons why we aren’t having those discussions—anxiety, lack of training, financial incentives—but patients who have those conversations with their physicians and have them earlier in their illness do better. They do better in making decisions about when to shift from simply trying to extend time to trying to preserve quality of life.
Ironically, by forgoing aggressive treatment at a certain stage, these patients are also more likely to live longer. I think the evidence is accumulating that although we are extremely good at making sure that we’re technically well prepared—in my case, as a surgeon—we are not nearly as effective at recognizing that developing effective communication skills for patients can take just as much training and practice.
Matching Priorities to Medical Options
How has the information you discovered changed the way you practice medicine and interact with dying patients?
I think the biggest lessons I learned are how to communicate better and that it is okay to have these difficult conversations with patients, even though they can be very emotional. I learned that the aims and goals of those conversations are very different from the way I understood them.
I thought that I needed to bring across as much information as I could for patients about the facts of their disease and the risks and benefits of the various pathways available. But in fact, what people are looking for is an understanding of how to match their priorities and concerns to the medical options that we have available. And those priorities change as circumstances change. So it is not sufficient just to be informative. We have to learn what matters most to patients in their lives—what they wouldn’t want to sacrifice—and be willing to offer and recommend choices that give them their best chances of preserving what matters to them as they approach the end of their lives.
Listening More, Talking Less
Now the critical part that was the most difficult for me to incorporate into my practice was to be more effective at listening. One palliative care physician told me that a marker of an effective conversation with a patient is that the physician talks less than half the time. Once I started paying attention, I found that I was talking 90% of the time. To talk less and come to better decisions with patients, I needed to ask questions more effectively.
I’ve picked up some basic questions that have been very useful in my clinic. For example, what is your understanding of where you are with your health or condition; what are your fears and worries for the future; what are your goals if your time is short; and what are the outcomes that are unacceptable to you? And then I’m using the answers to guide us toward a decision.
I found out how important asking these types of questions were with my father, who had an astrocytoma in his brain stem and spinal cord. When his symptoms began worsening, I asked him those exact questions. And it opened a discussion that made clear what level of function and outcome was still worth fighting for to him and what levels were not. That became terribly important as his condition progressed, and we had to make a series of choices about surgery, radiation, chemotherapy, and hospice.
Priorities Change as Conditions Change
One thing we learned was that we had to have the conversation repeatedly. As conditions change, priorities change. His top priority at first was to preserve his ability to do surgery. Later, as he developed signs of quadriplegia and pain that ended his practice, his priorities changed again, and the goals of his therapies changed. It wasn’t just an end-of-life conversation we were having. It was a conversation about what his evolving goals and priorities were for his care. Those conversations are something that all patients need to have with their physicians and family—well before the end is upon them.
Missing Parts of Medical Training
In Being Mortal, you show how the medical system is so focused on preventing death, when a patient dies, it is viewed as a failure instead of a normal occurrence of life. How can this perception be changed? Should there be a greater emphasis in medical training on preserving the highest quality of life a patient can have rather than prolonging life at all costs?
There are a variety of things about quality-of-life care and aging we don’t learn during training, and some of that needs to be taught in medical school and some of it needs to be taught in residency and fellowship and some even afterward. One of the gaps is in understanding the science of aging and frailty and what actually happens to people as we grow old. That includes some basic issues like falls—when do people develop risk for serious falls; what are the risk factors and signs; what are the known ways to reduce those risks? This knowledge is well established and very important but barely taught. Geriatric and palliative knowledge and skill are not well incorporated into our residency, fellowship, or specialty training.
The other missing part is teaching how to put a plan in place to deal with the evolving trajectory of a patient with a serious illness. We seem to know that crisis will some day come and are never prepared for it. Patients arrive at the end stage of what I’ve come to call the ODTAA syndrome—when One Damn Thing After Another starts to go wrong. When we do our first round of chemotherapy, radiation, or surgery, and things go well, it’s natural to hope that this is the way it will continue to go, but that’s not the same as having a plan for what happens if the situation takes a turn for the worse.
When we are onto second- or third-line therapy, we need to make it normal and routine to discuss patients’ goals and priorities for the possibility that their health worsens. And we need to bring the family into the conversation, because two-thirds of patients at the end stage of illness have to rely on somebody else to make decisions for them. Simply making conversations about a patient’s goals and priorities a normal part of medical care takes the terror out of asking these questions. They become a normal part of the visit.
Sign of Health System Failure
On November 1, Brittany Maynard, 29, diagnosed with stage IV glioblastoma multiforme, underwent physician-assisted suicide to avoid the pain and loss of control she feared would happen if the disease took its natural course. Do you support physician-assisted suicide?
I have complex views on this subject. On the most basic level, I think if people have unbearable suffering, I would be in favor of their having the option of assisted death. In the approach that has been taken in states like Washington and Oregon, where physician-assisted death is legal and carefully vetted to ensure that treatable conditions like depression aren’t being missed, less than 1% of the population chooses this option, and half of the people who get the prescription filled don’t end up using it, because often they are just relieved to know that they have an option if the suffering becomes so terrible.
That said, I feel like Brittany Maynard’s death was a sign of the health system’s failure. We should be deploying our capabilities, our knowledge, and our discovery to assure a Brittany Maynard that she can count on her caregivers to ensure care that would prevent her from having to face unbearable pain and suffering.
The fact that she could not count on this is a sign of our system’s failure. The goal is not to have a good death. The goal is to have as good a life as possible all the way to the very end. And I think there are many instances when the reason people are experiencing unbearable suffering is because we have not adequately treated their pain or misery. Or it may be because we have failed to present them with the kinds of priorities and options that might be available to them to make the best of the limited time they have.
Many people who enter hospice care experience great relief from the realization that there is some chance for making positive use of the time they have left. And we often send them to hospice care way too late for the approach to reap such benefits for patients.
As Good a Life as Possible
What is your definition of a good death?
I’m skeptical about the idea of a good death. I describe several deaths in Being Mortal, and it’s not always dignified and it’s not always pretty. What I’m interested in is that even in a very narrow space, where a patient isn’t getting better and his/her life is very constricted, there is still the possibility of having as good a life as possible all the way to the end.
My father eventually became quadriparetic from his astrocytoma. He was in pain and suffering difficult consequences from radiation therapy that had not been successful, and yet we were able to identify priorities to sustain his quality of life. He eventually decided to forgo chemotherapy, because the cost to his life was greater than the intended benefit.
He and his caregivers focused on reducing his falls, which rebuilt his strength. They tuned his medications to more effectively relieve his pain and anxieties. We worked to assure he still had the capacity, as long as possible, to connect and communicate with the people he loved. He had dinner parties, and he e-mailed. Skype was a lifeline, and tuning his medication so he could be coherent enough to talk every day with family back in India was important to him. In the end, he lived for 4 months without chemotherapy and many of the side effects he had been experiencing.
I don’t know if he had a good death, but he had a life he felt worth living during the remaining time he had. And I knew that because we asked him about what mattered to him most.
The main thing, it seemed to me, is that we ask about peoples’ priorities not just as they come to the end of their life, but as they face difficult choices earlier in the course of their disease to determine what sacrifices they are willing to make in their care and what sacrifices they are not willing to make. ■
Disclosure: Dr. Gawande has received royalties from numerous publishers for his writing, including from Being Mortal.