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Friday, June 26, 2015

Review: Being Mortal: Medicine and What Matters in the End

Being Mortal is Atul Gawande's book about end-of-life care. It discusses the history of end-of-life care, and how the current nursing home environment came about, not as a natural evolution of the poor houses of the past, but as an extension of the hospital. This explains the inherent conflict between providing good care leading to happier tenants, and satisfying safety requirements and reducing risk.

What's interesting by far about the book is it's criticism of nursing home care: fundamentally, eliminating risk is anthetical to happiness in a tenant/patient. By eliminating the possibility of the patient doing what he wants when he wants to, the patient is infantilized, and ironically, the result is poorer outcomes, in addition to the reduced quality of life the regimented approach ensues.

The alternatives are considerably different: various assisted-living philosophies attempt to ensure the tenant's independence while reducing risk by ensuring staff is on hand as called upon, rather than being intrusive. The problem is that all it took was a few bad apples and regulatory apparatus will then take over and ensure that safety is the highest priority, rather than patient happiness.

Gawande ties it all together with his own experience as a practitioner: he describes several patients, and touchingly, his own father's death (not even neglecting the detail of acquiring the Giardia parasite while scattering his father's ashes on the Ganges) By doing so, he reveals something important: it's critical to have the important conversations up front: how heroic do you want the interventions to be, and what's acceptable as an outcome (and by corollary, what's not!). For instance, there's an example of a patient whose father said, "As long as I can watch football on TV, I'm good." which surprised the heck out of his daughter.

The book is sadly lacking in statistics, as well as detailed cost analysis. It does, however, mention several important details: hospice care, for instance, is intended to optimize the day to day life, rather than potential recovery as opposed to the standard heroic life-extension attempts today. However, it turns out that hospice care usually also leads to as long or longer lifespan as a result: it turns out that if your day to day life isn't hell, you actually live longer even if heroic medical interventions aren't exerted:

The result: those who saw a palliative care specialist stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives— and they lived 25 percent longer. In other words, our decision making in medicine has failed so spectacularly that we have reached the point of actively inflicting harm on patients rather than confronting the subject of mortality. If end-of-life discussions were an experimental drug, the FDA would approve it.(Kindle Loc. 2504-7)
By far the biggest problem, it appears, is that medical professionals have to be able, trained, and willing to have these difficult discussions with patients. In one example, Gawande observes a physician saying, "Well, a good outcome for this patient as a result of this procedure would be an additional year or two." At the same, time, the patient was thinking in terms of getting an additional decade or two of life for the same procedure. Without a thorough and honest exploration of what each option means, it is no wonder that so many patients get railroaded into heroic interventions at the expense of quality of life and time spent with their loved ones:

People die only once. They have no experience to draw on. They need doctors and nurses who are willing to have the 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.(Kindle Loc. 2655-57)
  In any case, despite my mild criticism of the book above, this has so far been the best book I've read all year. If you have aging parents or are yourself aging, this book is a must-read. Highly Recommended.

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