by Paul R. Strickland
"The battle of being mortal is the battle to maintain the integrity of one's life - to avoid becoming so diminished or dissipated or subjugated that who are becomes disconnected from who you were or who you want to be."
My wife and I recently visited our daughter and her husband and our seven-month-old grandson in Burlington, Vermont. In one of our discussions, our son-in-law, Patrick, said they were considering some remodeling of their home. He asked if we had thought about where my wife and I might live if we needed to be closer to medical resources or if we were not able to live independently any longer. Might we ever consider living in Burlington and if so, should that factor into his remodel project?
Patrick's questions coupled with some planned remodeling of our house in Robbinston made us realize how little thinking or planning we had done about end-of-life issues. The possibility of needing to think about accessibility issues and possible contingencies if either my wife or I was living alone brought up realities that we have avoided thinking about. Questions about revising or updating wills, updating advanced directives, where we would want to be buried, burial services, how we wanted to live our last days when that time came and other what-if scenarios when our health or memory was deteriorating were all reminders that we had chosen as Scarlett O'Hara to "think about that tomorrow."
A few years back when my mother-in-law was nearing the end of her life journey, we read, as a family, Being Mortal: Medicine and What Matters in the End by Dr. Atul Gawande. I recently decided to take it off the shelf and reread it from the perspective of my own life. As a hospice volunteer, I am certainly aware of the issues raised in the book, but they look considerably different when viewing them through my own personal lens.
I am convinced that for anyone interested in hospice and end-of-life issues Dr. Gawande's book is required reading. His straightforward, compassionate approach to death strives to honor a person's dignity at end of life while allowing someone to maintain a quality of life that as much as possible allows control over who they are. My wife and I have found it to be an excellent resource as we consider our journey and our place in the world.
Gawande explains that, as a medical student, he was never really taught to help patients cope with death - only how to save lives. He writes that while medicine allows people to live longer and better, it turns aging and death into medical processes. Gawande aims to explore how the experience of aging and dying has changed, and how it might be improved.
He discusses how modern medicine has allowed people to recover from various illnesses, infections, and injuries that used to be a death sentence. Even incurable cancers are now treatable. But medicine has also changed the way people think about old age, viewing aging as a failure or weakness rather than a normal process. Because aging is an uncomfortable topic, people avoid it, but this has created problems, as well. Most people don't save enough for retirement even though people are living much longer.
At one point in the book, Gawande focuses on an elderly couple living in a retirement home. When they are both in their 80s, the wife's health deteriorates and she breaks both legs, causing her to be moved to a nursing home unit in their retirement community. But seeing how the staff treats her like a rag doll rather than a person as they dress and bathe her, her husband Felix asks to return to their home so they can have more control over their situation. Four days after Bella's casts come off, she dies, and Felix is heartened by the fact that she got to spend her final days in her own home.
One part of the book follows Lou Sanders and his daughter Shelly. When Lou's health declines and he can no longer live alone, he moves in with Shelly. But he is frustrated with his lack of control over food, the television, and when he can see friends. Similarly, Shelly feels the very real burden of having to care for her father on top of caring for a family and having a job. One of the obvious end-of-life challenges that many face is how to increase people's autonomy without sacrificing their health and how to give people the freedom to choose how to live their lives and make them feel they still have a place in the world.
Gawande discusses the topic of doctors' failure to understand their terminal patients' needs. He brings up the example of a 34-year-old patient diagnosed with advanced stage IV lung cancer. Her oncologist prescribes a variety of chemotherapy options. The patient undergoes four rounds of chemotherapy, none of which improve her tumors - but the chemo does lead her to have a suppressed immune system. Because of this, her lungs are compromised and her breathing becomes labored. Despite her protests that she does not want to die in the hospital the constant pursuit of treatment leads her to pass away in the hospital as a result of pneumonia.
Hospice care focuses on alleviating suffering and helping people take advantage of the time they have left, and it is an alternative to traditional treatments and surgeries. Gawande illustrates how hospice care not only improves people's well-being but often it helps people live longer than traditional medicine.
Gawande highlights the importance of discussing a person's priorities for the end of their life. At times, a person might prioritize their quality of life and well-being over the possibility of longer survival.
Gawande concludes by reiterating that when it comes to aging, illness, and dying, everyone should understand their hopes, fears, and trade-offs, and every doctor should help patients have these conversations. Though discussing death is difficult, helping people in their final phase of life has been Gawande's most fulfilling experience.
"Our ultimate goal, after all, is not a good death but a good life to the very end."
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