“Being Mortal” is a book I needed to read. It’s beautifully and poignantly written by Atul Gawande, a surgeon at Brigham and Women’s Hospital in Boston, where I spent several months in 2005/6 being treated for and cured of Burkitt Lymphoma. I first became aware of Gawande from the articles he’d written for the New Yorker magazine, but this is the first book of his that I’ve read. He writes with great compassion about the end of life of several of his patients, including that of his own father. He revisits the ancient Ars Moriendi updating it for the modern secular age. Gawande observes that advances in medicine and social organization have not kept pace with the art of dying. He points out that we accept death once it’s over, but it’s the period leading up to death that we find it difficult to deal with. Gawande has long been a proponent of including the patient in medical care and decision making, and here he extends that responsibility to the family. He recognizes that, all too often, doctors can give the impression that their superior knowledge and experience make them solely responsible for making decisions about treatment. This assumes that the doctor’s only job is to prolong life, but although that may be the doctor’s most important job, it is not the only one. Patients also need to retain agency over their lives, and to be able to take care of things important to them. All too often the family is caught between the two: should they listen to the doctor who has experience of treating many patients, or to the patient who is the only one who can say what matters to them. The patient knows that they only have a diminishing amount of time left to them, and may prefer to spend those days in familiar surroundings, with minimal pain, doing things that they care about. The patient may not wish to face the prospect of being subject to painful testing, invasive procedures, and spending time in the ICU; a prospect that  only postpones the ultimate. Even if patients escape this indignity, they may find themselves consigned to long-term care nursing homes. Often this is done for the benefit of a family that, for whatever reason, is unable to take on the responsibility of caring for the individual in their home. Here again there is a conflict between the interests of the caregiver and the patient. The caregiver may feel that they have to provide safe and consistent care, be it waking up the patient at set times for blood draws and taking vitals, dispensing regular doses of medication at set times during the day, and providing a controlled diet for breakfast, lunch, and dinner. Such a program is unlikely to be what the patient wants. Patients, while recognizing that they can’t do just what they did when younger, may still want to do things the caregiver won’t allow. This might include things such as sneaking the odd cigarette and cocktail! Caregivers would be correct in deeming that they are not in the best interests of the patient, but is the caregiver the only one who can decide that? Cannot the patient be allowed to shoulder some of the risk if doing so makes them happy?

Most people who have attended high school in the US, or its equivalent in the UK, will have learned about Maslow’s Hierarchy of Needs, having Self Actualization at its pinnacle. Gawande takes issue with this characterization of human needs as being applicable to everyone. It might be appropriate as a goal for high school students with their lives ahead of them, but for folks at the end of their lives they’ve probably done as much self-actualization as they need. They may be ready to look beyond the self and connect with something greater. As we age, we have more years behind us than ahead of us. We may feel the need to savor the past, atone for past transgressions, and share with others what they’ve learned along the way.

In a section on “Death with Dignity’ Gawande quotes the Stephen Jay Gould, the distinguished evolutionist from his 1985 essay “The Median isn’t the Message.” A few years earlier, in 1982, Gould had been given a diagnosis of Peritoneal Mesothelioma, a rare form of abdominal cancer, and given a life expectancy of 8 months. He actually died, 20 years later, of lung cancer, an entirely different illness. Gould writes:

“It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity. Of course I agree with the preacher of Ecclesiastes that there is a time to love and a time to die – and when my skein runs out I hope to face the end calmly and in my own way. For most situations, however, I prefer the more martial view that death is the ultimate enemy – and I find nothing reproachable in those who rage mightily against the dying of the light.”

Gould’s case may be exceptional, but Gawande is concerned about the rise of the “Death with Dignity” movement, fearing that it may become the default option for the convenience of family and society when other options exist, including adult communities in the early stages of decline, or hospice towards the end. He recognizes that there are cases where it may be the best option, but questions the significant growth in rates of assisted suicide, currently  around 5% in Canada’s Quebec province and the Netherlands. Ultimately, Gawande comes down on the side of Hospice and Palliative Care (HPM). It is sobering to learn that HPM was only recognized as a specialty by the American Board of Medical Specialties in 2008, lagging the UK by more than 20 years who recognized it as a medical specialty in 1987. But it is also encouraging to learn that palliative care programs in US hospitals with 50 or more beds have increased from 20% in 2000 to 84% in 2022. A search of my health insurance’s website returned 59 HPM specialists in my geographic area.

For all this, addressing the complex issues surrounding the end of life is not easy. There is significant room for policy development in this area, and it is to be hoped that policy makers will read this book, understand it, and find the will to act upon its recommendations.