Being Mortal: Medicine and What Matters in the End

“. . . for all of us who inevitably face the time when we will be making our own decisions regarding end-of-life issues and/or decisions for our loved ones.”

Atul Gawande MD has recently contributed another title to the collected body of literature regarding the two critical issues of aging and end of life issues. This physician is honest and straightforward, using examples from his practice and his own family. He demonstrates that when it comes to loved ones, a) we do not have all of the answers, and b) we tend to fall into our established patterns of either providing the answers for patients and/or excluding them from the decision making.

The book is divided into two separate areas: the first, issues related to aging and how elderly people either cede or have their autonomy taken away by well-meaning children and /or restrictions of the facilities in which they ultimately reside. Dr. Gawande uses various case studies of individuals who started aging vitally and gracefully until some critical juncture (ie injury, dementia) where they must give up living on their own.  In sum, few of these places take on the feel of “home.” What follows is the slow demise of the individual’s “soul;” however, there are models which offer hope, and these are provided.

All aspects of the author’s premises are well documented, with extensive notes following. He points out that as recently as 1945, most deaths occurred in the home; in the 1980s only 17 percent did. In the process, the medical profession soared in finding ways to heal and fix problems, but ignored quality of life and well-being issues: “The job of any doctor . . . is to support quality of life, by which is meant two things: as much freedom from the ravages of disease as possible and the retention of enough function for active engagement in the world.” Priorities shift from prolonging life to strengthening relationships with family and friends, being mentally aware, not being a burden on others, and achieving a sense that their life is complete.

The author cites Tolstoy’s Ivan Illyich as an example of a dying person who realizes his days are limited. “His ambition and vanity disappear. He simply wants comfort and companionship.”

Even today, most terminal cancer patients report (according to the author) having no discussion with their doctors about their goals for end-of-life care; however, the third that did were far less likely to undergo CPR or be put on a ventilator or end up in the ICU. 

These discussions yielded patients who were far more likely to die at peace and in control of their situation and to spare their family anguish. The author credits not only hospice care, but also palliative care (which is not just “comfort measures” but a medical specialty in which practitioners help patients to decide when to stop chemotherapy, enter hospice); these services can run concurrently. Oddly enough, many of these patients live 25 percent longer. Multiple studies have yielded results of this nature.

Dr. Gawande deftly illustrates that we have come a long way from the days of the essential Kubler-Ross model of death and dying, yet we have miles to go, especially within the medical community.

He cites the example of Gunderson Hospital in LaCrosse, WI, where every patient is questioned regarding his preferences regarding resuscitation, intubation, ventilation, antibiotics,  tube feedings. Physicians admit that this has made their job easier, even with patients who are not considered terminal.

“Our responsibility in medicine is to deal with human beings as they are. People only die once. They have no experience to draw on. They need doctors and nurses who are willing to have hard discussions and say what they have seen, who will help people prepare for what is to come and escape a warehoused oblivion that few really want.”

Napkin Notes by Garth Callaghan is another timely title being released at the same time. The author, a man with kidney cancer, sends his daughter to school with a “napkin note” in her lunch, to let her know how much she is loved. He determines to provide these notes to the time of her graduation from high school, even if he should not live that long. 

This is a touching example of a cancer patient who has identified what is really important to him. He follows through along with—and in spite of—medical intervention.

Neither hospice nor palliative care are new concepts on the horizon of medical care, yet Dr. Gawande’s astute presentation of an argument in favor of patient wellbeing is food for thought—not just for those in the medical profession but for all of us who inevitably face the time when we will be making our own decisions regarding end-of-life issues and/or decisions for our loved ones.