See also page E217 and www.cmaj.ca/lookup/doi/10.1503/cmaj.151171, and page 707 and www.cmaj.ca/lookup/doi/10.1503/cmaj.160547
Early palliative care for patients with advanced cancer was shown to improve quality of life, symptom management and satisfaction with care in three major randomized controlled trials (RCTs).1–3 These findings prompted the inclusion of palliative care in clinical practice guidelines for patients with advanced cancer.4,5 Unfortunately, late referrals to palliative care and hospice services limit these potential benefits for patients and their caregivers.
In a linked study, Zimmermann and colleagues6 provide further evidence that negative perceptions of palliative care represent a potential barrier to early palliative care in the setting of advanced cancer. Using a sample of participants in a previous RCT of palliative care,3 the authors conducted qualitative interviews with patients and their caregivers from both the palliative care intervention group and standard oncology care control group.
This qualitative study reported several important findings. First, both groups described negative initial impressions of palliative care. However, the intervention group described a shift toward a more positive view through their experience of palliative care. Their experiences of palliative care practitioners partnering with patients, caregivers and oncologists to enhance quality of life and address physical and psychosocial distress reframed their concept of palliative care. Notably, the term “palliative care” was viewed as stigmatizing by both groups, whereas the alternative name “supportive care” was viewed more favourably by those patients and caregivers receiving palliative care.
The negative connotation of palliative care should not be surprising. Too often palliative care has been associated with death and dying, a loss of control or abandoning of hope. The term supportive care has generally been regarded more favourably. In a randomized trial of language used to describe palliative care services, the term supportive care was associated with more favourable impressions and a better understanding of services for patients with advanced cancer.7 Similarly, oncology health care professionals preferred the name supportive care and considered the negative connotations associated with palliative care as a barrier to referral.8 In response to these findings, some palliative care programs chose to rebrand themselves as supportive care services.9
The interviews in the current study by Zimmerman and colleagues6 also show that patients and caregivers view health care professionals as having an important role in explaining and recommending palliative care. Although changing the name to supportive care may help promote a more positive view of palliative care, stigma will persist if this type of care is recommended only as default treatment when curative or life-prolonging treatments are deemed ineffective or undesired.
A shift in oncology care is necessary to facilitate early, concurrent palliative care to maximize outcomes for patients with cancer. Instead of dichotomizing standard oncology care and palliative care, palliative care should start at the time of cancer diagnosis and continue across the spectrum of cancer care. The type and intensity of palliative care services are calibrated over time to meet the needs of the patient and caregivers, regardless of prognosis or cancer outcome.4,10
If palliative care is viewed as an essential evidence-based component of advanced disease management, then the benefits of palliative care support should be available and recommended to all patients and caregivers at every stage of their illness. Palliative care would no longer be chosen; it would simply be integrated into comprehensive oncology treatment that supports patients and caregivers by incorporating palliative care principles and services into all aspects of their care.
Key pointsEarly palliative care has been shown to improve quality of life, symptom management and satisfaction with care in patients with advanced cancer.
Stigma associated with the term palliative care may be a barrier to timely referral and deprives patients and caregivers of the full benefits of palliative care.
Although the term supportive care may be viewed more favourably, barriers to implementation of either supportive or palliative care can only be addressed by complete integration into routine oncology care.
Footnotes
Competing interests: None declared.
This article was solicited and has not been peer reviewed.