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Why I like palliative care
Most will agree that palliative care is an important part of good oncology patient care, especially when things don’t go well. Most will also agree that inpatient and outpatient palliative care services can help to advise or provide this care. These services, and the palliative care specialists who often staff them, are becoming more commonplace and more accepted. It wasn’t long ago that a palliative care specialist wryly told me that her service was viewed by some in the hospital as the “death doctors,” though the discipline continues to overcome this stigma.
I was asked to comment on my own experience with palliative care services, and this caused me to reflect upon my evolving relationship with the specialty over the last several years.
When I was a medical student, palliative care seemed an exotic discipline manned by compelling personalities. Most of clinical medicine was unfamiliar to me at that time, and the language and mechanics of palliative care — unfamiliar drugs and delivery methods, calculations to titrate and convert large narcotic doses, the intricacies of the DNR order and discussion — were as foreign as anything else. The practitioners identified as palliative care providers were among the most loved in the hospital. One’s name badge was filled with gold stars from grateful patients and families. Another practitioner was my general medicine attending, who remains a friend and mentor to this day. In general though, the discipline seemed mysterious at the time.
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Palliative care rotation in residency
In residency, palliative care became another clinical skill set that I wanted to master. I was lucky to be in a program where my senior residents and attendings were heroes. Their thoroughness, competence and compassion were widely emulated by interns, who tried hard to live up to their examples. The sense of responsibility for patients that each physician in the chain of command took upon himself or herself was absolute and complete, at all hours of the day or night; each of us felt that we could and would do anything and everything for our patients.
I wanted to be an expert palliative care doctor, just as I wanted to be an expert nephrologist and cardiologist and gastroenterologist and every other specialty within internal medicine and pediatrics in order to be the most complete doctor for my patients that I possibly could. But providing good palliative care wasn’t easy. I remember rotating through the palliative care service with one of the field’s true experts, and talking one afternoon with a woman dying of ovarian cancer. I asked her about her nausea and anxiety, talked with her about her family, and empathized as best I could. Outside the room, my attending provided gentle but appropriate constructive feedback, pointing out ways in which I could have been more specific or inquisitive or insightful or present for that patient. I wanted to be good at this and worked hard to achieve competency.
New perspective
As an oncology fellow, palliative care is everything it was before, but it has taken on a new dimension for me now — it is a refuge. Providing good oncology care is hard, as everyone knows, because cancer is difficult to treat. Curable cancers require expertly delivered, intensive therapy to achieve success. Incurable disease requires similar skill in maneuvering cancer treatment modalities to prolong life. The discussions in cancer center disease treatment groups, or multidisciplinary tumor board conferences, or beyond the walls through cooperative clinical trial groups or professional society meetings all focus on the nature and arrangement of therapeutic strategies to improve DFS or PFS or OS. Even for patients off trials, the question that usually comes up is “What comes next?” or “What other treatments can we offer?”
Working with a palliative care service, or providing oncology care “in a palliative mode” on the other hand, provides the opportunity to focus entirely on relieving suffering and being present for patients. The emphasis changes from fighting a disease to providing comfort for a person. Paradoxically, though the goal is no longer cure or prolongation of life, providing this kind of care can feel extremely satisfying. Maybe this is because the skills required — the listening, the responding to concerns, the providing relief from physical, psychological or existential suffering — feel like what doctoring is supposed to be. On an inpatient palliative care consult service, in the midst of a frenetic hospital environment where physicians run in and out of rooms to order and check labs and tests and write discharge summaries, the activities mandated by the palliative care consult service — staying longer, sitting down and actually talking with patients and families — can feel very satisfying too.
Firsthand experience
When the patients in need of palliative care are one’s own, this can be emotionally wrenching. Did I do everything I could? Is there another treatment I should have offered? I remember a patient of mine with metastatic breast cancer who recently died. At one point in her care, consistent with her wishes, I provided a referral to hospice and switched to a primarily palliative mode. She had received three lines of treatment up to that point. This raised some eyebrows among my colleagues, since the number of patients with metastatic breast cancer in current practice who can “tolerate” five lines of treatment or more continues to increase. Nonetheless, after my patient’s death I received a letter from her sister, telling me that she had died comfortably and thanking me for allowing her to die with dignity.
There is an obvious response to all of these reflections. Good oncologists should always consider and provide good supportive and palliative care for their patients. An emphasis on the patient, and not the disease, should always be the primary focus of care. Inpatient physicians should always stay longer, sit down and talk with their patients and families. And we should always work with our patients to know when enough active treatment is enough and when the proportion of care that is palliative should significantly increase. Yet, I am still troubled. Why does providing good palliative care feel like a refuge to me now in ways that it didn’t before? And why are there so many palliative care physicians who no longer primarily treat cancer? Could the structural and institutional organization of our cancer care delivery system, and the incentives therein, present subtle barriers to the ability of good oncologists to deliver good palliative care throughout the disease continuum?
I am grateful for the palliative care movement and for the availability of expert providers who can help us to provide this kind of care for our patients who need it. I’ve spent a few paragraphs reflecting a bit about what palliative care has meant to me in my growth as a doctor. What does it mean to you? And what does it mean to our patients?
William Wood, MD, MPH, is a second-year Hematology and Oncology Fellow at the University of North Carolina at Chapel Hill and a member of the HemOnc Today Editorial Board.