A few years ago, I read a newspaper article about a 65 year old physician who died climbing Mt. Everest. My first reaction was “how wonderful”, not THAT he died, but HOW he died — doing something he enjoyed and presumably at his physical and mental peak. I would wish that kind of death for myself and for the people close to me. Another preferred option would be to live to a ripe old age with mental faculties intact, continuing to be independent, and dying in one’s sleep. Of course, most of us will not be “lucky” enough to leave this world that way, but will instead have a decline in mental or physical abilities or both, becoming more dependent on others. Or, we will have serious, debilitating and possibly painful illness, including cancer.
Dr. Gawande writes about coming to terms with the mortality of his friends, family members and patients and about the failure of the medical system to understand how to help people live with dignity until the end and without unnecessary suffering, especially once it becomes clear that there is nothing more that medicine has to offer. I found myself reading this book eagerly for the perspective it imparts to those of us who are caring for elderly family members and for the wisdom it imparts to those of us who are physicians trying to have difficult discussions with patients and family members regarding what is important to them and how likely it is that they will pull out of this most recent setback.
The book is divided into two parts. The first discusses aging — the slow decline and factors that make it hard for people to care for themselves as they age. He discusses the origins and limitations of nursing homes and assisted living facilities and the approach of geriatricians, who try to maintain fitness and independence for their patients, knowing that there is no “cure” for aging. He discusses recent studies which have shown that the elderly live more contentedly and remain more engaged if they have some autonomy over their environment or have some greater purpose or usefulness, such as taking care of pets or plants, or continue to be able to do things that they enjoy. For various reasons, including efficiency and liability issues, many institutions favor safety and regulation over dignity, choice and freedom. Dr. Gawande profiles people who are trying to change the model of care for the elderly so that it is more individualized and they are less marginalized. He also tackles the difficulties that people face as they try to, or need to, care for their loved ones at home. This can be financially, physically and emotionally difficult and there is often very little support.
In the second part, Gawande describes decision-making for those with incurable illnesses, especially cancer. This was eye-opening for me. Our model of medicine, from the 20th century, is that we have all of this technology and we keep using it until we run out of things to do. There is always one more test or one more treatment. Very rarely do we discuss the tradeoffs in terms of quality of life. We also are not very specific as to the quantity of life that we are offering in exchange for some very difficult and possibly painful treatments. This is not malicious on the part of doctors. We are trained to fix. Sometimes I try to remember that doctors existed for centuries before they could actually do much for patients. They were there for comfort and support and experience as much as for treatment. That part of medicine has been overshadowed by technology and we have not been trained to have the difficult discussions.
This book made me realize that the important question is not “how long does the patient have to live?” the answer to which is not always clear, but “what does the patient want out of the rest of his or her life – what’s important?” Gawande illustrates how hard it is to discuss these things, for a combination of reasons, from the doctors, the patients and the family’s point of view, but also how necessary it is. He notes that families who have had discussions and have been able to give their family members an end that is concordant with their wishes and is not traumatic, are less likely to suffer depression and stress after the death. He also discusses the field of palliative care, where a palliative care team will help keep a patient comfortable and address the patient’s desires and concerns even while the rest of the team may be prescribing treatments (i.e., chemotherapy). Patients tend to live longer and more comfortably in hospice care or palliative care.
Gawande’s book is very moving, as he gives us detailed stories of patients, especially of his father, who eventually died of cancer. But Gawande was able to help his father and mother maintain quality of life and make decisions about what was important to them and that could be a goal for all of us. As he says, “If to be human is to be limited, then the role of caring professions and institutions—from surgeons to nursing homes—ought to be aiding people in their struggle with those limits. Sometimes we can offer a cure, sometimes only a salve, sometimes not even that. But whatever we can offer, our interventions, and the risks and sacrifices they entail, are justified only if they serve the larger aims of a person’s life. When we forget that, the suffering we inflict can be barbaric. When we remember it the good we do can be breathtaking.”