In the last several years, there have been many wonderful books about how we navigate dying. This interest coincides with a movement toward questioning the current use of technology up against an individual’s desire to have some control at the end of life. We are needing to slow down and listen to what people want. We are needing to rethink the idea that everyone wants everything modern medicine has to offer. This new territory is Palliative Medicine, a medical specialty at the intersection of medical interventions and end of life care
What is palliative care?
What is palliative care? As defined by the Center to Advance Palliative Care, it is specialized medical care for people with serious illness, focused on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family. It is appropriate at any age and at any stage in a serious illness. It is an important and evolving concept but still is not routinely available or routinely offered to patients.
That Good Night: Life and Medicine in the Eleventh Hour describes how we step into this intersection gracefully. The author, Dr. Sunita Puri, is an assistant professor of clinical medicine at the University of Southern California and the medical director of palliative medicine at Keck Hospital and the Norris Comprehensive Cancer Center in Los Angeles. This book is the story of Dr. Puri’s journey to palliative medicine; she takes us along.
Often patients have never heard of palliative care….
As a young physician, Dr. Puri struggled to find the right words about end of life conversations and had to learn at the bedside. We are in the room as she speaks to patients. “You are forced to a place of extreme intimacy, talking to them about the lives they have led up to this point, their fears and regrets, the people they love, the ways they have made sense of loss earlier in their lives, and how they are making sense of loss now. You remind yourself to listen carefully and to choose your words carefully.” Often patients have never heard of palliative care and they consider hospice care as giving up. They carry loss, grief, anger, fear, sadness, regret. These strong emotions can make us want to leave the room. “It isn’t your job to erase or justify all of their suffering, but rather to see it, not ignore it. To ease it when you can. And to be there as they move through it…”
“Your patients are showing you that dying is still living.”
We travel with Dr. Puri from the hospital to the clinic to home visits. About home visits she says: “Dying hasn’t bestowed upon them the meaning of life or turned them into embodiments of enlightenment; dying is simply a continuation of living this messy, temporary life, humanly and imperfectly.” She laments the failures of home care. Why will the healthcare system pay for last ditch chemotherapy or dialysis for a dying patient but not for one trained caregiver to help them remain comfortable at home? She witnesses the wisdom and dignity and strength patients exhibit as they make peace with life as part of the dying process. She tells herself: “Your patients are showing you that dying is still living.”
She weaves throughout her book stories about her Indian immigrant parents and especially the strong influence of her mother, an anesthesiologist who managed to raise two children in a stable, very spiritual Hindu home in Los Angeles. As a result, Dr. Puri is not afraid to talk about God and the soul with patients. She expresses a view of death as a spiritual, sacred passage, not a medical failure. She asks: “What if we regarded death with reverence instead of fear? What if we could learn to appreciate what we have now, in the midst of life, knowing that it is all a temporary gift? What if doctors realized that they cannot fix everything, but only slow down rather than cure most chronic illnesses? What if doctors learned how to identify and talk about suffering and dignity while still in medical school? What if they learned how to discuss medicine’s offerings and its limits?”
Conversations around palliative care are where we can come to rest between technology and our desire for peaceful death. When doctors can improve at approaching their patients with vulnerability, honesty, trust and compassion, it will be possible for us to conduct our end of life time, and die as we choose, with dignity, without suffering. This is the gift that palliative care has to offer. It brings humanity back into medical care. Dr. Puri has given us the instruction as well the courage to use our words wisely. Our words and actions around end of life care are at the heart of the revolution that is taking place.
At End of Life Choices California, we have trained volunteers available to provide information and personal support about all end of life options, advance care planning, palliative and hospice care, and California’s End of Life Option Act. For more information about our services, please browse our website or contact us.
Judith Schnack, MSN, RN, FNP is a Client Advocate Volunteer with End of Life Choices California
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