Being Mortal: Medicine and What Matters in the End

Find in catalogIn Being Mortal, Atul Gawande, who is a practicing surgeon and incredible storyteller, calls for such philosophical change in health care that it not limit itself just to survival but also includes the overall well-being of the patient. This book, of which I highly recommend as an “everyone should read,” is an eye opening examination on better living alongside aging and illness.

Gawande uses his father’s own story to dive into many concepts of sharing medical decisions and thinking about what matters in a society that values independence when independence becomes a difficult thing to achieve. For his father, who is also a surgeon, it all started with tingling fingers and some neck pain. As symptoms grew in severity, he learned their origins existed in a tumor that was slowly taking over his spinal cord. By sharing this story we encounter questions that frequently speak to serious life and medical situations. At what point does one choose a risky operation? At what point would the disease cause enough disability to justify the risk of greater disability or even death trying to fight it? After speaking to a neurosurgeon that saw his father’s questions came from worrying about risking his strength, sensation, and mobility for the sake of treatment of uncertain benefit putting off surgery for years as his symptoms slowly progressed rather than taking a big risk with a surgery that could take all that away was the best call for him. In a search for finding the answers to these questions and others like it, Atul introduces the idea of modern doctors being more interpretive, rather than paternalistic or informative- helping patients and family members determine their priorities and help them figure out the best way to achieve them. For all the involvement doctors have during what Atul refers to as the “waning days,” they are mostly focused on the disease and fighting it. Here is an opportunity to not only treat a disease but also focus on a person’s functional abilities and priorities. He shares what he learned from a palliative care doctor about the policy of “ask, tell, ask,” when having difficult prognosis talks. With that in mind, physicians would be able to ask what patients wanted to hear, answer them, and then ask them what they understood. The book covers the different options for senior living- the evolution of multigenerational households to nursing homes and assisted living centers. Multigenerational households were the norm for the majority of our history though our society now days prizes the independence from such complex situations. Nursing homes primary focus is on the safety of its residents combined with the needs of a functioning institution which often makes these places less than ideal for everyone that values keeping a sense of independence, freedom, and control in their lives. These short coming were the inspiration behind assisted living centers for Keren Brown Wilson in the 1980s. She wanted to create a place where elder individuals could experience the freedom and autonomy everyone desires regardless of physical limitations. Having witnessed her own mother’s stroke at a young age and her journey through nursing homes, Keren opened a 112 residential complex, where despite significant disabilities, all rented their own full apartments where they also had access to assistance at all times. And while there was some concern on whether such freedoms and independence would risk the residents health and safety numerous studies found the opposite. The program was an incredible successful, showing not only resident’s health was maintained but also showed there was a significant increase in physical and cognitive function. However, as the term assisted living spread its high ideals did not always go with it. And eventually most cases of assisted living became just another step on the continuum of care that was little better than the nursing homes they were meant to replace. In the last part of the book the extremes that medicine will to treat at all costs is discussed. He says “people with serious illness have priorities besides simply prolonging their lives. If your problem is fixable, we know just what to do. But what if it’s not? The fact that we have had no adequate answers to this question is troubling and has caused callousness, inhumanity and extraordinary suffering.”

Gawande also promotes the end-of-life medicine of hospice care. This mode of care I knew even less about than the others, admitting that the knowledge bar wasn’t extremely high to begin with. Gawande puts this one in a new light for me; with great perspective he tells stories of hospice workers diligently working with patients and their families to make it possible to carry out a meaningful life that was shaped by the person living it. Talking about being mortal brings to the surface our biological constraints. And how despite all these limits of flesh and genetics how there is such potential for a fully meaningful and remarkable life. We can all learn and make medicine more about enabling wellbeing. And how enabling wellbeing is about keeping in mind the reasons why we are alive rather than just being alive.

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