“Death was always a part of my life. … I still think I have probably a huge fear of death — I suspect that’s partly what drew me into this field.” — Study participant
Many palliative care clinicians were drawn to their specialty because death entered their lives at an early age, according to a recent study. "The population in this study are people who are involved with death by and large through a vocational choice, and are comfortable with death and dying," said its lead author, Shane Sinclair, PhD.
This probably is not true of most oncologists, who presumably choose their specialty intending to cure people of cancer, not to help them while they die because of it. How many oncologists find their experience with death and dying "a unique opportunity ... to discover meaning in life through the lessons of their patients, and an opportunity to incorporate these teachings in their own lives," as the study says of palliative care specialists? Nonetheless, for anyone who cares routinely for people who will soon die, the report by Sinclair et al ("Impact of death and dying on the personal lives and practices of palliative and hospice care professionals," available in full text for free at the Canadian Medical Association Journal website) would make interesting reading.
A literature search suggests that the study that Sinclair carried out in Canada is the first rigorous research into how palliative care specialists cope with having death as the central feature of their job description. Most studies about end-of-life care have focused on the experience of patients and their relatives or caregivers. Relatively few have dealt with the professionals, and most of these are anecdotal or limited to single institutions. They tend to state postulates rather than findings.
Ethnography of Palliative Care
Sinclair has acted as the Margaret Mead of palliative care, interviewing and surveying 6 key opinion leaders in death and dying and 24 clinicians across Canada and in a hospice in Calgary, as well as simply observing their daily work. He reports that they find their work difficult but "largely positive."
Although he has worked for 3 years at the Tom Baker Cancer Centre in Calgary, Alberta, Sinclair wouldn't speculate much about oncologists, whom he hasn't studied. "In a sense we don't see a lot of death and dying in cancer centers," he said. "Patients are either transitioned to a palliative care setting or to a hospice."
However, although the issue of death and dying is not "at the forefront," he added, "it plays a prominent role in practice and the way care is delivered." As many others have pointed out, he remarked that oncology is a culture of hope within which death does not fit comfortably. Ever since The War on Cancer we've had the metaphor of battle (targets, long fights, survivors), but there's the ever present "subtext" of patients who live on with incurable cancer, he added.
As yet, no ethnography of oncology informs an understanding of how oncologists deal with the reality of death. The existing literature on the question offers mere glimpses.
In 2003, Frank Meyskens and his coauthors wrote in the Journal of Clinical Oncology about the "tidal wave" that hits the oncologist with every successive dire prognosis. "Although physicians often successfully execute their duty of support to patients and families, they commonly have little time to process their own sorrow about their patients' death and suffering," their article said. "Instead, more often than not, the extra time spent being a compassionate provider to the last patient has left them 30 minutes late for another needy patient."
Oncologists generally strive to do well and are "hyper-responsible," observed Massachusetts General Hospital oncologists in a 2005 article on coping with a patient's impending death, which they subtitled "How Far is Too Close?" As they put it, dealing with a dying patient becomes yet another risk-benefit analysis: Growing too close to any patient with cancer risks entangling yourself with grief later, but distancing yourself to avoid that grief risks leaving the patient isolated.
A Predominant Factor in Burnout
Many studies cite the demand of coping with death as the predominant factor in burnout among oncologists. According to a cross-sectional study of attending physicians, residents, and interns published in 2003, the death of a patient appears to strike particularly hard at female doctors, those in training, and physicians who have had a long relationship with the person who died.
Unfortunately, this long relationship is part of the reality of oncology. Many patients are going to return to the hopeful oncologist years later, to be given a bad prognosis. This pattern of loss after longstanding relationships with patients may make oncologists particularly vulnerable to distress at their death, speculate a group of palliative care specialists in a 2009 article in JAMA.
They cite two international studies showing that oncologists experience more stress than palliative care specialists. The article is useful in providing specific self-care advice for alleviating compassion fatigue and grief about patients. Being connected to a support network is a "key to survival," they say, and the article describes self-awareness practices that can ease the distress.
Although the publication of Sinclair's study caused a "buzz" where he works, he said, this is probably unrelated to the current initiative to improve the integration of end-of-life care into the Calgary cancer center, including setting policies for conducting conversations about advanced care planning. Recent studies have shown that patients have less distress if these conversations take place earlier in their disease.
Of course, talking about impending death is another source of stress for oncologists. A recent survey at the inpatient cancer care center at Virginia Commonwealth University found that only 7% of newly admitted patients had discussed advance care planning with their oncologists. Only 23% of patients had wanted to talk to the oncologist about it anyway, but about half said that if the conversation had to take place, they wanted it to be with their oncologist.
Sinclair spoke at length about the need to integrate end-of-life care earlier into regular cancer treatment, which may be more feasible in the setting of Canada's universal health care system. As oncologists seem to have more distress than the palliative care specialists who deal directly with death and dying, he added, such an integration might help them as well as their patients.
"Palliative care specialists have been in the landscape of death and dying longer than oncologists," Sinclair said. "They've picked up some skills that oncology care professionals can all learn from."
There is further information on this topic at an ASCO website about end-of-life care issues. The National Cancer Institute also offers Education in Palliative and End-of-Life Care for Oncology, a CD-ROM training course on end-of-life care for all kinds of providers in cancer treatment.