Palliative care has been misunderstood on multiple levels. Is it hospice? Is it death panels? Is it a fancy term to provide cheap care? Is it about rationing care? Or is it truly the fuzzy wuzzy of medicine?
The Center to Advance Palliative Care in the U.S .urges professionals across the board to describe palliative care, and the medical subspecialty of palliative medicine, as specialized medical care for people living with a serious illness. It focuses on providing relief from the symptoms and stress of a serious illness with the goal of improving the quality of life for the patient and the family. Palliative care is provided by a team of doctors, nurses, social workers and others who work together with the patient’s other doctors to provide an extra layer of support. It is appropriate at any age and stage of an illness, and can be provided together with curative medicine.
When I met Steven he was in significant pain from bony metastatic disease. His initial palliative care clinic visits were focused on aggressive symptom management so that his pain would be well-controlled and he could continue with chemotherapy. As his disease continued to progress through cancer treatment, we started talking about what was most important to him. At 75 years old, he wanted to marry his girlfriend. Ellen. He wanted to continue with as much cancer treatment as he could tolerate. Steven and Ellen had been high school sweethearts who went their separate ways after graduation. They had eventually married different people and had children; but after their spouses passed away they reconnected on their high school Facebook reunion page more than 50 years later. Ellen would accompany Steven on his palliative care clinic visits to take notes and ask questions. She managed his medications and moved in to help him at home.
Multiple lines of chemotherapy continued to fail Steven. With a burst of energy, Steven and Ella got married in-between cycles of chemotherapy, and had a quiet honeymoon by the beach. We had to adjust Steven’s medications to give him better pain control and treat his anorexia, anxiety and insomnia. Our conversations during his palliative care visits started evolving into how we should be preparing for the end of life. Steven wanted to make sure his medical care did not deplete their finances. He wanted to be home when he passed away. Most importantly, he wanted to make sure that Ellen had the support she needed through those difficult times. After discussions with his oncologist, Steven opted to stop cancer treatment and involved hospice at home. I visited Steven at home before he passed away. Ella shared with me a box of letters she had sent Steven when they were in high school. He had kept every letter she had sent more than 50 years ago, and had carefully tied them all up with a frayed ribbon. Just like the movies, but better, because this was real life.
Is palliative care truly the fuzzy wuzzy of medicine then? Palliative care’s focus is not just the illness, but also the person and the family living through the illness. Palliative care sees the person beyond the disease. It sees Steven, who loved life and loved Ella, and who just happened to have cancer. It makes sure that the care that the patient receives is aligned closely with what matters most to them. It empowers patients to live as well as they can for as long as they can, by managing their symptoms aggressively and assisting with the challenges of transitions in care and adapting to new normals. It has been effective in improving outcomes for patients. And so if all this means that palliative care is the fuzzy wuzzy of medicine--then we’ll take it.
Stories mentioned above were shared with permission from the patients and their families. Names have been changed to protect their privacy.
Aileen Soriano-Pisaturo MD is the Director of Palliative Care Services at Kent Hospital in Warwick, Rhode Island and is Associate Professor of Medicine, Clinician Educator at The Warren Alpert School of Medicine, Brown University. She is a graduate of the University of the Philippines College of Medicine and is Pinoy proud! firstname.lastname@example.org