Being Mortal: Decisions, Hospice and Life at the End of Life

Smarter Medical Decision Making When Anything Feels Possible and Hope (Still) Springs Eternal

Reading Atul Gawande’s latest work, “Being Mortal: Medicine and What Matters in the End” is no easy task. At moments touching and others heart wrenching (reader alert — keep tissues handy), at its core the message is simple, almost obvious: organized medicine is not well adapted for everyday, and utterly predicable, end of life conundrums. For friends, family members, much less the individual whose life is near passing, this has significant “user experience” implications. The surgeon-author provides some suggestions.

Many years ago a friend’s wife, also a doctor, lent me her copy of the late Sherwin Nuland’s award winning book “How We Die: Reflections on Life’s Final Chapter.” Similar to Gawande, Nuland wrote about his experiences of watching others pass. Before the age of institutionalized dying, when the experience was much more visceral for a wider audience, more of us had a front row seat to life’s final act. We grew up knowing what to expect.

Nearly a quarter century later, Gawande proves a worthy successor to Nuland. Providing the reader a history of how hospitals came of age after WWII (’46 Burton Act, plus drugs that worked), as well as how “poorhouses” disappeared (occupants shifted to hospitals, later nursing homes), the author explains why most of health care is configured around an organizing principle of “fixing.” Gawande writes, “I am in a profession that has succeeded because of its ability to fix. If your problem is fixable, we know just what to do. But if it’s not?”

As anyone who has been on the business end of a surgeon’s scalpel can tell you, myself included, this is not the worst outcome. Even so, the author spends little ink extolling modern scientific accomplishments. Rather Gawande focuses on the other situation, as that is where the care giving community finds itself in transition.

The author writes, we should not “addle our brains and sap our bodies for a sliver’s chance of benefit.” Instead, we as a society and medical industry should recognize there are many times when the risk associated with the fixing, or even our reduced capacity after a “successful” medical fix, may not be worth the status quo.

Applying a concept from Daniel Kahneman’s immensely popular “Thinking, Fast and Slow,” Gawande explains the “Peak-End Rule” for considering end of life choices. Should I endure a long painful surgery and recovery process to gain perhaps 12 more months, while tied to essential, life maintaining equipment? Or should I enjoy a peaceful, more alert three months to live out life as I choose?

As the author writes:

“For human beings, life is meaningful because it is a story. A story has a sense of a whole, and its arc is determined by the significant moments, the ones where something happens. Measurement of people’s minute-by-minute levels of pleasure and pain miss this fundamental aspect of human existence…in stories, endings matter.”

This story ending should help guide us. We should use it to help solve for the personal, “experiential bottom” below which we refuse to suffer the daily indignities associated with a medically promoted fix. It is because health culture is biased towards action, built around the long tail of clinical outcomes, a new model of patient-provider engagement is required.

Our personal objective, Gawande states, should be to obtain a sense of peace, a medical path that enables our lives to be made complete. To do this we each must come to terms with what matters most, and confirm our intentions are followed (it is true, having daughters helps in this regard). An increasingly popular path is choosing to forgo the often debilitating fixes associated with small probability, rejuvenating outcomes, and instead electing to pass in one’s home, in relative pain free comfort surrounded by loved ones.

Enter the hospice professionals, on who Gawande heaps much praise. He cites numerous studies which show not simply reduced end of life costs and pain, but somewhat paradoxically, extended life. As he puts the observation, “almost Zen: you live longer only when you stop trying to live longer.”

However, and make no mistake, death is the enemy. And because the enemy has superior forces, Gawande writes, “eventually, it wins.” So instead of fighting a medical war of “total annihilation,” he asks we reframe the objective:

Just because we can, should we?

Often the answer is “no.” And, fortunately, clinical strategy is shifting. Gawande writes of transitioning away from institutionalized aging to a more shared decision making protocol. Better communication with patient and family, and even some responsibility shifting, will achieve higher end of life, “story” outcomes.

No one doubts questions of mortality, whether institutionally threaded or not, are hard to discuss. Further, medical advancements have created the paradox of choice. Yet, as the author makes clear, one must decide and, ultimately, someone will. In this environment, as any Boy Scout can tell you, it is better to “Be Prepared.” With the aid of Gawande’s latest bestseller, increasingly we are.

Thanks for reading. Comments and suggestions for other topics welcome.

HSA Coach. Health is Wealth(TM).

For more reads on science and health, click here and here.

Our personal health document storage and health savings account (HSA) educational app is now available. App Store here. Google Play here.