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
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.
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.
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
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.