A Book For Our Time

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Photo Credit: Katy Butler

The medical profession has developed extraordinary expertise that allows people to live much longer, much healthier lives. However, these advances, especially when used on the elderly, can extend the length, but not the quality, of that life, creating ethical, financial and emotional challenges for the physicians, the elderly patients and their families.

Katy Butler’s new book, Knocking on Heaven’s Door, The Path to a Better  Way of Death, provides a first hand look at one family’s struggle with these challenges. Her father, a former college professor, suffered a major stroke that left him with significant and increasing debility. In the year following his stroke, he received a pace maker to boost a slow heart rate. Over the course of the next six years, her father developed severe dementia and needed assistance in all areas of daily life. He complained that he was “living too long”. Caring for her father took an increasing emotional and physical toll on her mother.

Ms. Butler concluded that the pace maker was preventing her father from having a dignified, natural death. As she and her mother struggled to address their concerns with the physicians treating her father, she came to realize that her family had not understood the possible long term, unintended consequences of the routine implantation of the pace maker. She also learned that the medical profession’s focus on treatment was increasingly not aligned with her family’s deepening despair over the suffering of both parents.

In contrast to her father’s experience, when Ms. Butler’s mother was diagnosed with a serious heart condition, she delayed deciding on surgery until she had researched the outcomes of the procedure among the elderly. She learned that over half of older people who had the surgery died in the hospital or were discharged to nursing homes. She concluded that she did not want to risk this possibility, and she decided against the surgery. Her heart condition worsened, and she died after a relatively brief illness in hospice care.

Ms. Butler, who is a science journalist by training, not only takes the reader through the ordeal of her family, but provides information on palliative care, the Medicare payment structure that favors medical procedures over talk (discussion about treatment options and end of life preferences), and concepts of “slow” versus “fast” medicine.

Ms. Butler’s book, which started as an article in the New York Times, has been met with both critical acclaim and controversy. It hones in on the concerns of a growing number of elderly patients and their families who want to avoid a lingering death in a state of significant impairment. It speaks to the need to expand the concept of informed consent to include the likelihood of adverse impact on functionality and quality of life over time.  For people whose personal philosophies or religious beliefs favor life over all other considerations, this book will be troubling. However, for people who worry about living without quality of life and for the physicians who treat them, this book is a must read.

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