Advocacy Versus Avoidance

15 Aug 2018 1:58 PM | Brandon Davenport (Administrator)

Digest commentator: Andrea Feldstain, Ph.D. Candidate, University of Ottawa; Resident in Clinical Psychology, Alberta Health Services

The field of palliative care is advancing, developing, and innovating. In the past few decades, it has evolved from care at end-of-life to a practice seeking to relieve or prevent suffering as early as diagnosis. Palliative care can entail symptom control, improving quality of life, increasing engagement of patients in their own care, potentially extending life expectancy, and/or increasing comfort when dying. However, the integration of palliative care into the full cancer trajectory is still a work in progress, as exemplified in the selected article.

Wentlandt and colleagues (2014) examined the referral practices to palliative care of pediatric oncologists versus adult oncologists. To compare these two groups, the researchers surveyed the majority of Canadian medical, radiation, surgical, and pediatric oncologists. Topics discussed included the availability of specialized palliative care services (i.e., inpatient consultation, inpatient units, outpatient clinics), referral practices (e.g., timing of referrals, life expectancy at time of referral), and attitudes (e.g., referring to palliative care adds too many care providers, uncomfortable referring before end-of-life).

Their study provides some good news in that both pediatric oncologists and adult oncologists perceived excellent access to at least one form of specialized palliative care, with consultation being the most available and outpatient services being the least available. In addition, the majority of pediatric oncologists and adult oncologists reported they were comfortable referring patients to palliative care as early as at diagnosis (87% and 70%, respectively). Unfortunately, despite perceiving excellent access and confidence, the bad news is that this is not reflected in practice. Both pediatric oncologists (79%) and adult oncologists (84%) reported that the large majority of their palliative care referrals were for patients with uncontrolled symptoms and a life expectancy of 1 to 6 months. Approximately 90% of pediatric oncologists and adult oncologists reported they would refer patients with uncontrolled symptoms for a prognosis of less than 1 year but only 57% would refer for uncontrolled symptoms and a prognosis of greater than 1 year. Less than 1% reported having referred patients with a prognosis of greater than 1 year (0% pediatric oncologists; 0.6% adult oncologists). So, why is there this discrepancy between perceptions and practice?

Two possible explanations can be found in Wentlandt and colleagues’ (2014) Table 4. On one hand, they found that oncologists may believe they can provide palliative treatment themselves. On the other hand, they found some may avoid palliative care referrals because they believe their patients associate palliative care with impending death. The majority of pediatric oncologists (58%) reported that they would refer earlier if palliative care was renamed Supportive Care, while adult oncologists were equally split. This is unfortunate because (1) it robs patients/caregivers of the expertise of palliative care, (2) misconceptions of palliative care could be easily clarified with a discussion, and (3) delaying referrals until disease is terminal reinforces this misconception. Although pediatric oncologists and adult oncologists both seem aware of the evolving scope of palliative care practice and associated benefits, referral practices have yet to catch up. Echoing Wentlandt et al.’s (2014) suggestion, more education and advocacy is needed as this may be a more viable option than hiding behind a new name.

Article: Wentlandt, K., Krzyzanowska, M.K, Swami, N., Rodin, G., Le, L.W., Sung, L., & Zimmerman, C. (2014). Referral practices of pediatric oncologists to specialized palliative care. Support Care Cancer, 22, 2315-22. DOI: 10.1007/s00520-014-2203-6.

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