One major benefit of being semi-retired is that I have more time to “read” audio books each day while I walk and exercise. This is given me the opportunity to catch up on books I have long wanted to read (e.g. Steinbeck’s East of Eden) as well as more current titles.
I recently read a book that I’d like to recommend to other elder law attorneys as well as Physicians and anyone who is interested in aging and mortality. The book is
Being Mortal: Medicine and What Matters in the End by Atul Gawande.
In this book Dr. Gawande explores the attitude of physicians and patients toward aging and death. If this sounds like a dreary reading experience, it is not. Dr. Gawande is a storyteller. His narrative of his experiences and the evolution of his views on what is important at the end of life is illustrated by stories drawn from the lives of his patients and his own family. Their stories turn this serious discussion into a compelling read.
The book recounts the development of Dr. Gawande’s attitude toward medical interventions at the end of life. He begins as a young surgeon who follows an informational approach to advising his patients about end of life treatment options. He would give them all the medical information he could, including discussion of aggressive treatment options that had virtually no realistic potential for success. He would then ask the patient to choose. Without further guidance patients tend to choose to keep fighting for a chance at a cure (10 more years) through aggressive but futile treatment rather than choosing to accept the reality of mortality. Over time Dr. Gawande came to realize that his unguided informational approach overwhelmed his patients and led to the infliction of treatments that increased suffering and loss while having virtually no hope of improving or extending the patient’s life.
Through his experiences with his patients and family members, Dr. Gawande evolved to a more realistic and compassionate approach to counseling and treating patients with terminal conditions. He now focuses on listening to his patients to try to appreciate their priorities and figure out how medicine can help them attain their goals.
In his view, society and medicine do not have a good track record at helping people through the end of their lives. Dr Gawande overviews the history of the way our society has treated our frail elderly and dying – from the poor houses of a century past to more recent institutional oriented care in hospitals and nursing homes that he feels are too focused on patient safety rather than a meaningful existence. He tells the stories of pioneers who have sought to change the model in nursing home care (the Eden Alternative), assisted living, palliative care and hospice.
These innovators asked a fundamental question: How do we give meaning to the last round of life for our dying and their families. Dr. Gawande suggest that our emphasis on a medical-curative approach often robs our frail and dying of the opportunity to find meaning in their remaining days.
According to Gawande the Medical profession often makes the mistake of fighting for a longer life rather than for a better life – a life that has meaning and richness for the terminally ill. An overly medical approach can impoverish the end of life and cause useless suffering. It can even shorten the patient’s remaining time.
We teach our physicians how to treat their end of life patients by providing drugs and procedures rather than how to care for them. Caring involves listening and observing and determining the patient’s priorities. What makes the patient’s life worth living? How important is it for the patient to avoid suffering, spend time in valued activities, or attend that daughter’s wedding? Will a potential intervention interfere with the patient’s priorities or lead to avoidable suffering? Our medical orientation is to do everything possible to extend life, not to ask what can we do to help the patient have their best possible day now given the limitations of their aging bodies and the waning of their lives.
Change is coming, but only slowly. It is true that more people are dying in hospice care. But Geriatrics is relatively low paid and lacking in prestige. And political polarization stands in the way of changing our approach to end of life. It was incredibly difficult just to get doctor/patient discussions about end of life authorized by Medicare. It was caught up in an irrational political controversy about “death panels” And in Pennsylvania we have struggled to pass legislation to provide education and training about Physician Orders regarding Life Sustaining Treatment (POLST). We are afraid of death and it shows. But death is part of being mortal.
It is hard to disagree with Gawande’s conclusion that we have over-medicalized and stripped meaning from aging and dying. As care providers, aging professionals and advocates we need to do a better job of listening to our patients and allowing them to write their own story’s last chapter. Gawande’s Being Mortal provides a strong argument for change