Advance Care Planning Communication: Oncology Patients and Providers Voice their Perspectives

Abstract

Advance care planning helps to ensure that patients' end-of-life preferences are understood and discussed with providers. It is an important component of patient-centered care, particularly when patients are facing life-limiting illness. It also has ethical implications for providers, yet evidence suggests that these conversations are not always occurring, particularly in underserved populations. The aim of this study was to understand the challenges and personal beliefs regarding ACP through interviews with patients undergoing active cancer treatment and their oncology providers. This study took place at an urban, multispecialty cancer center in the mid-Atlantic region where approximately 1400 patients are treated each year. Findings revealed differences among both patients and providers in terms of their ACP knowledge, preferences, and practices. Overall, 70% of patients were familiar with advance directives (100% of White patients and 45.5% of Black patients), yet only 35% of them reported having completed one (55.6% of White patients and 18.2% of Black patients, although not statistically significant). Most providers (70%) held ACP conversations with patients with advanced illness only. They tended to make assumptions about the amount of information that patients desired and noted the significant challenges that were inherent with these types of conversations. Overall, ethical implications are inherent in ACP as patients are making medical decisions without always having necessary information. There are various reasons why providers may not supply information regarding potential outcomes and end-of-life planning and why patients may not request (or know to request) more medical information.

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

“…Of the 52 patients with recurrent disease who were undergoing active treatment for their recurrence, 38 patients (73.1%) knew about ACP. This is similar to Bires’ survey of 20 patients which found that 14 (70%) were aware of ACP (Bires et al, ). Pfirstinger noted that awareness of a form of ACP (in this case, the possibility of assigning a healthcare proxy) was low among new patients admitted to a haematology/oncology outpatient clinic (Pfirstinger et al, ).…”

“…Awareness of ACP was examined by four of the studies in this review (Bires et al, ; Brown et al, ; Carrion et al, ; Pfirstinger et al, ). Brown et al surveyed 110 cancer patients regarding their knowledge of a form of ACP and found that nearly a quarter (24.8%) of all patients had no knowledge of ACP (Brown et al, ).…”

“…Covidence identified 311 duplicates, resulting in 629 papers that were screened on title and abstract by all authors. A total of 73 were retrieved for full-text screening, of which eleven met all inclusion criteria (Balboni et al, 2013;Bires, Franklin, Nichols, & Cagle, 2018;Brown et al, 2016;Carrion, Nedjat-Haiem, Martinez-Tyson, & Castañeda, 2013;Garrido, Harrington, & Prigerson, 2014;Hanratty et al, 2013;Kurita et al, 2018;Loggers & Prigerson, 2014;Pfirstinger, Kattner, Edinger, Andreesen, & Vogelhuber, 2014;Sherman et al, 2017;Tang et al, 2014). Authors ES, OG, SM and SD were involved in the full-text screening.…”

“…A total of eleven studies were included in the current scoping review (Table 3; Balboni et al, 2013;Bires et al, 2018;Brown et al, 2016;Carrion et al, 2013;Garrido et al, 2014;Hanratty et al, 2013;Kurita et al, 2018;Loggers & Prigerson, 2014;Pfirstinger et al, 2014;Sherman et al, 2017;Tang et al, 2014). Eight of the eleven studies were conducted in the United States, all studies included patients with cancer, and the samples were mainly heterogeneous, in that patients with a variety of oncological diagnoses were included.…”

“…Ethnicity, race and culture were frequently described as important factors (Balboni et al, 2013;Bires et al, 2018;Carrion et al, 2013;Garrido et al, 2014;Kurita et al, 2018;Loggers & Prigerson, 2014;Sherman et al, 2017). White patients were more likely to be involved with ACP compared to patients with another ethnic background (mostly Latino or African American in the papers reviewed).…”