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Camilla Zimmermann
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IASLC Pre-Conference School of Nursing (ID 3)
- Event: LALCA 2019
- Type: Invited Speaker Session
- Track:
- Presentations: 1
- Moderators:
- Coordinates: 10/17/2019, 09:00 - 15:30, Castillo A 5-6
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PC3.15 - Stigma Around Palliative Care Why This Exists and How to Manage (ID 40)
09:00 - 15:30 | Author(s): Camilla Zimmermann
- Abstract
It has been shown that early involvement of palliative care improves outcomes for patients with advanced cancer as well as for their caregivers. Several trials, systematic reviews and meta-analyses have demonstrated benefits in quality of life, symptom control, mood, and satisfaction with care. However, palliative care services tend to be involved only in the last weeks of life. One possible reason for this reluctance to engage with palliative care is the stigma that is often associated with it, and the misunderstanding among healthcare workers and the public that palliative care is equivalent to end-of-life care. We conducted several studies investigating the opinions of oncologists, palliative care physicians, patients, caregivers and the public about palliative care in general and early palliative care in particular. Our overall aim was to investigate possible reasons for the lack of referral or late referral to palliative care in order to inform policy and practice in this regard.
We conducted a large qualitative study, in which we interviewed 71 patients with advanced cancer and their caregivers who had been randomized (or not) to receive early palliative care in a previous cluster randomized trial. A total of 48 patients (26 intervention, 22 control) and 23 caregivers (14 intervention, 9 control) completed interviews; we assessed their attitudes and perceptions about palliative care using a grounded theory methodology. We also conducted several surveys. The first was a national survey of oncologists (n=603, response rate 72%) regarding their referral practices to palliative care. We then conducted another survey, this time of palliative care physicians (n=531, response rate 71%) to assess their attitudes toward early palliative care and their readiness to provide this care. Both surveys were administered both online (by email) and by regular mail. Most recently, we conducted a large online survey of the Canadian public (n=1518) regarding their knowledge and attitudes related to palliative care. This last survey was distributed by MD Analytics, a healthcare research firm.
In the grounded theory study, participants in both trials arms associated palliative care with death, hopelessness, dependency and end-of-life comfort care. Participants stated that they feared and avoided palliative care, and that their perceptions often originated from interactions with health care professionals or from the media. During the trial, the impression of palliative care for intervention group participants changed to one of "ongoing care" that improved their "quality of living" but they still felt that the term palliative care carried a stigma. Intervention group participants emphasized the need for education by health care professionals on the meaning of palliative care; a vocal subgroup called for the renaming of palliative care, though they had no suggestion for a name.
In the survey of oncologists, 84% stated that they referred patients usually/always, but most referred late in the disease course. Forty-four percent agreed that patients had negative perceptions of palliative care. One third would refer earlier to palliative care if it was renamed supportive care. Predictors of earlier referral included satisfaction with palliative care service availability, acceptance of the palliative care service of patients on chemotherapy, and completing a rotation in palliative care.
In the survey of palliative care physicians, more than 90% supported early palliative care referral, but only half had resources to deliver it, and only 20% received early referrals. Those with adequate resources were more likely to be family physicians (p=0.02) and to work on teams (p=0.03). Those receiving early referrals were less likely to agree that patients should stop chemotherapy before referral (p?=?0.009). Although 60% agreed that patients perceive the term "palliative care" negatively, only 21% of palliative care specialists supported renaming the specialty.
In the survey of the Canadian public, 59% stated they did not know, prior to reading the World Health Organization (WHO) definition, that palliative care could be involved early in the course of illness, and 45% did not know palliative care could be provided together with other treatments aimed at prolonging life. Eighty-nine percent felt the WHO palliative care definition helped them to better understand what palliative care is, and 91% believed that Canadians should be made aware that palliative care can be included early in the course of a patients illness. Only 15% of participants thought that a change in name of palliative care would increase their willingness to engage with palliative care if they were diagnosed with a serious illness.
The stigma around palliative care is mainly due to the association of palliative care with end-of-life care, and is perpetuated by late referral practices. Reasons for this late referral pattern may include factors at the level of the patient and family (e.g. lack of understanding of palliative care), the oncologist (e.g. lack of education in palliative care), and the palliative care team (e.g. lack of availability or prohibitive referral criteria). In order to reduce stigmatization of palliative care and to promote early access to palliative care for patients with cancer, several changes are suggested. Oncologists would benefit from palliative care training during their residency programs, which could promote integration with palliative care specialists and improve understanding of the relevance of palliative care early in the disease. Palliative care physicians would benefit from reviewing their referral criteria, and from collaboration with primary care teams to enable more timely provision of palliative care. Lastly, a coordinated effort needs to be made to educate the public about palliative care and its relevance early in the disease course. Although renaming of palliative care services could be considered on an individual basis, only a minority of oncologists, palliative care physicians and members of the public thought that renaming palliative care would be helpful.
