I was driven to read Atul Gawande’s compelling book for the first time shortly after its publication in 2014. My sister, Anne, was halfway through her awful struggle against an incurable and in fact untreatable bone marrow cancer. As the designated problem-solver and fixer in the family, I was faced with something I couldn’t fix, and that caused me great distress.
Terminal illnesses like cancer and the natural diseases of old age pose difficult questions for doctors, patients and families. Which treatments are worth pursuing and which are merely going to destroy quality of life? How to find the grace to accept? How to die at peace and with dignity?
In “Being Mortal,” Gawande guides us smoothly and with compassion toward the conversations that families and doctors must have with elders and those in terminal illness in order to promote and protect quality of life. He shows us that rather than subject them to endless procedures and incarceration in a soulless facility, we can help our family members to live their fullest lives. He does this by drawing us into the stories of his own family members and the patients he has met along the way. He introduces us to the people who rebelled against the institutions where older people were warehoused to free up hospital beds.
In the last several decades we have failed our graduating medical students by encouraging them to view aging as a medical condition. Physicians faced with aging patients concentrate on what they can fix, such as replacing joints and installing stents, rather than approaching the older adult as a whole person and finding out what is most important to them. As Gawande says, “This is the consequence of a society that deals with the final phase of the human life cycle by trying not to think about it.”
When we’re young, most of us have a lot of freedom. We can live as we please, play by our own rules, and have no one interfering in our decisions. As one of the leaders of a fitness and balance class for older adults, I listen with great empathy as classmates openly grieve about the gradual loss of flexibility and ease of movement and the appearance of new aches and pains. What is hardest for those of us in our 60s and 70s to accept is that it’s not going to get any better. This is the story of the rest of our lives.
In the good old days, one or more of the children would stay in the family home to care for their parents as they aged. That gave the parents at least the illusion of independence and being in control of their own lives because they were still in their own homes. Now it is more common for parents to move in with one of the adult children in their well-established home. This creates a whole different dynamic for all involved, with the parents feeling like children and the children feeling invaded.
In older age, as in youth, we want to keep our autonomy while feeling that our lives have purpose and worth. Even as complete independence becomes impossible, we don’t want to give up the activities and pleasures we have valued for years or the dreams we have not yet achieved. As we try to accept the new limitations imposed by our bodies and minds we still want to maintain as much independence as possible at every stage.
While this book is mostly focused on those living through the inevitable losses and declines of old age, it is equally relevant for younger people dealing with debilitating and terminal conditions and for their loved ones who must watch.
We must think seriously about what is most important to us in life, and to share those values with our friends, family and doctors, while also doing what we can to make life in our less able and active times as rewarding as possible. I am grateful to Gawande for writing this lovely book and reminding me that aging and death are a normal part of life to be accepted and embraced.
On Memorial Day 2015, Anne died peacefully at home, under hospice care, with her sisters and her daughter beside her. We sang her home and toasted her with good whisky. It was the best death we could give her.
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