That Good Night: Life and Medicine in the Eleventh Hour
Sunita Puri (Viking, 2019)
Hospitals began to offer palliative care in the 1980's, but the American Board of Medical Specialties only recognized it as a subspecialty in 2006. Five years later, when Sunita Puri elected it as her specialty, her parents had doubts. "'Why not do something more useful, like cardiology or intensive care? You can use those skills all around the world, but you can't do that with this... what is it called again?'" Her mother is an anesthesiologist, which was, in her day, a bold career choice; what's more, as an immigrant from India, she had survived much riskier choices than that; but she urged her daughter toward a more traditional path.
Palliative care does represent a departure from the way doctors are generally trained to think. They spend three years of medical school and at least three years of further training learning what to do about patients who are ill: try to make them well. Adjust the medication, excise the lesion, support the breathing, cure the disease. If the patient is mortally ill, it's all the more urgent: call for the crash cart, restart the heart.
Such intensive treatments are often uncomfortable, if not downright miserable. Palliative care disrupts that progression by taking a different perspective. The term 'palliative' refers to care directed at keeping patients comfortable, and preventing suffering. 'Hospice' refers to such care at the end of a patient's life, when further treatments of disease may be stopped altogether.
Hospice and palliative specialists usually work in teams, which may include social workers, chaplains, and nurses as well as doctors, and they want to ask a different set of questions: is a longer life better if it involves substantial suffering, or loss of dignity? What constitutes, for a particular person, a good quality of life? What might the dying person need to say, or do, before they're ready to go? It's easy to see why medical school is not good preparation for these situations: they take time, and they admit of scary outcomes. With or without treatment, three out of three people die.
In appropriately anonymized case studies, Dr. Puri traces her own progress in learning to lead these conversations. Gentleness does not mean mushiness: "I was learning that honesty sometimes took the form of measured, compact declarative sentences. I had to be Ernest Hemingway. And this sometimes felt brutal, the exact opposite of compassionate. But the honesty was the compassion."
In some cases, the patient is the most ready to have these conversations, because they alone know just how sick and tired they are. Family members have their own work to do, to make ready to let a loved one go. Often, they have unrealistic expectations. If life were like television, nearly everybody would get well and go home. The hospice team stands by, saying, "I wish that for you, too. But what would your loved one want, if that doesn't happen?"
Dr. Puri would also like to dispel the tendency of other doctors to see her as the Angel of Death. Putting a patient into hospice care is not 'giving up', or 'doing nothing.' It's treating pain and discomfort, and tending to people at a spiritually significant time in their lives.
Some problems that people have follow them right to the edge of the grave. Poverty, in particular: "Fully experiencing the benefits of home hospice requires resources that hospice actually cannot provide: Money to afford caregivers, particularly in the absence of involved family members. A nearby pharmacy that stocks opiate medications for severe pain. Insurance that covers long stretches in nursing homes for people whose families may not be able to care for them. Without these luxuries, which some may take for granted, dying at home can be even more full of chaos and suffering than dying in a hospital."
I hope this book will prompt reflection, and conversation, both at the community level–how would we ideally address those care-giving needs?–and in our own families, and our own hearts. May we all be granted a safe refuge, and a holy rest, and peace at the last.
Any Good Books, August, 2021
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