Barriers to goals of care discussions with patients with advanced cancer and their families: A multicenter survey of oncologists.

Abstract

15 Background: Early documentation of end-of-life (EOL) preferences in patients with advanced cancer is associated with less aggressive EOL care, however, several barriers to having these discussions exist. Evaluating practitioner-level barriers in the ambulatory oncology setting by adapting an existing survey from the critical care and internal medicine contexts was deemed important. Methods: The previously published “DECIDE” survey was modified to the ambulatory oncology setting and pilot tested. Surveys were then distributed to oncologists in Ontario, Canada via paper and secure online methods. The survey asked physicians to rank on a numerical scale the importance of various barriers to having EOL discussions with patients and their families. Trends were established using descriptive statistics. Analysis by respondent demographic was not completed due to small numbers. Results: A total of 30 out of 79 participants responded to the survey, for a response rate of 38%. Respondents generally ranked patient and family related barriers highest. For instance, patient difficulty accepting prognosis or indicating a desire to be “aggressive” was rated by 69% of respondents as an extremely or very important barrier to initiating EOL discussions. Sixty-three percent of respondents also rated patients’ inflated expectations of further cancer treatment benefit as a very or extremely important barrier to discontinuing active cancer-directed therapies. Patient or family refusal for referral was rated by 47% of respondents as a very or extremely important barrier to early palliative care referral. The majority ( > 85%) of respondents were very or extremely willing to initiate, lead, and finalize the EOL discussions with patients and their families. Conclusions: Oncologists in this study ranked patient and family related barriers to having EOL discussions above all other barriers. Further work is required to better understand such perceived barriers, and compare them to patient preferences and perceptions about EOL planning and cancer care at the end of life. Targeted interventions to address these barriers could then be developed.

Barriers to the early integration of palliative care in pediatric oncology in 11 Eurasian countries

“…18 Briefly, survey development was predicated on WHO guidelines, a review of the published literature, and synthesis of major findings assessing physician-perceived barriers to the integration of palliative care in LMICs. 2,9,13 The survey underwent iterative rounds of revisions for content and construct validity and cultural relevance. Survey items were serially tested by 2 panels of US and Eurasian palliative care experts, translated into Russian and Mongolian by bilingual native speakers, and pilot tested in all languages by physicians representative of provider specialties in the target survey population.…”

“…To date, the majority of literature has focused on barriers in high-income countries, centering around parent refusal and unrealistic expectations for cure, as well as physician education and attitudes, emotional labor, and prognostic uncertainty. [9][10][11][12] Provider fears or misperceptions often result in the late integration of palliative care after curative options are no longer available. 7,13 However, LMICs face an additional set of challenges to integrating palliative care into disease-directed treatment, encompassing structural barriers such as limited financial resources, health system infrastructure and capacity, and medical education for specialists and general providers.…”

“…However, financial, socioeconomic, and cultural barriers continue to delay the integration of palliative care for children with cancer. To date, the majority of literature has focused on barriers in high‐income countries, centering around parent refusal and unrealistic expectations for cure, as well as physician education and attitudes, emotional labor, and prognostic uncertainty 9‐12 . Provider fears or misperceptions often result in the late integration of palliative care after curative options are no longer available 7,13 .…”

Factors influencing the engagement of cancer patients with advance care planning: A scoping review

“…Given the complexity of care at the end of life (EOL) and the need to plan for such care in advance, advance care planning (ACP) is increasingly regarded as the best way to improve and optimise EOL care (Braun et al, ; Epstein, Volandes, & O'Reilly, ; Ethier, Paramsothy, You, Fowler, & Gandhi, ; O'Sullivan & Higginson, ; Sinuff et al, ; Wahid et al, ). Advance care planning refers to a patient's decisions about prospective health care, in consultation with family members and healthcare providers.…”

“…Further, ACP has been found to impact on preferred place of death, in that it facilitates a death at home (Wahid et al, ), which is relevant given the large proportion of terminally ill patients who, against their wish, die in a hospital setting (Swerissen & Duckett, ). Finally, it may help patients and healthcare providers in making difficult and preference‐based decisions around aggressive treatment or discontinuation of treatment (Ethier et al, ). In contrast, the absence of ACP facilitation is likely to contribute to poorer quality of death and dying (Braun et al, ).…”