Views of advanced cancer patients, families, and oncologists on initiating and engaging in advance care planning: a qualitative study

Abstract

Background: Advance care planning (ACP) is a process by which patients reflect upon their goals, values and beliefs to allow them to make decisions about their future medical treatment that align with their goals and values, improving patient-centered care. Despite this, ACP is underutilized and is reported as one of the most difficult processes of oncology. Aims: To 1) explore patients’ and families’ understanding, experience and reflections on ACP, as well as what they need from their physicians during the process; 2) explore physicians’ views of ACP, including their experiences with initiating ACP and views on ACP training. Design and setting: Qualitative descriptive study in Nova Scotia, Canada with oncologists, advanced cancer out-patients and their family members. Methods: Semi-structured interviews with advanced cancer out-patients and their family members (n=4 patients, 4 family members) and oncologists (n=10) were conducted; each participant was recruited separately. Data were analyzed using constant comparative analysis, which entailed coding, categorizing, and identifying themes recurrent across the datasets. Results: Themes were identified from the patient / family and oncologist groups, four and five respectively. Themes from patients / families included: 1) positive attitudes towards ACP; 2) healthcare professionals (HCPs) lack an understanding of patients’ and families’ informational needs during the ACP process; 3) limited access to services and supports; and 4) poor communication between HCPs. Themes from oncologists included: 1) initiation of ACP discussions; 2) navigating patient-family dynamics; 3) limited formal training in ACP; 4) ACP requires a team approach; and 5) lack of coordinated systems hinders ACP. Conclusion: Stakeholders believe ACP for advanced cancer patients is important. Patients and families desire earlier and more in-depth discussion of ACP, additional services and supports, and improved communication between their HCPs. In the absence of formal training or guidance, oncologists have used clinical acumen to initiate ACP and a collaborative healthcare team approach.

Impact of advance care planning and end‐of‐life conversations on patients with cancer: An integrative review of literature

“…The literature supports the development of patient‐provider relationship with trust development, and patients felt respected and empowered due to the ACP discussions (Agarwal et al, 2020; Kumar et al, 2020; Michael et al, 2015; Toguri et al, 2020). There was conflicting evidence related to the care which was based on goals and receipt of care at the end‐of‐life (Bernacki et al, 2019; Tang et al, 2019; Yoo et al, 2020).…”

“…The data extracted from the reviewed studies are displayed in a methodological matrix (see Tables A1 and A2 in Appendix A). The sample size ranged from a minimum of four patients in a qualitative study (Toguri et al, 2020) done in Canada to a maximum of 644 patients in the descriptive quantitative study (Stegmann et al, 2020) conducted in the Netherlands, making a total of 112, 443 patients, and 217 oncology clinicians. See Table A1 for a summary of reviewed studies.…”

“…The study by Michael et al (2015) and Toguri et al (2020) provided insight into cancer patients' feelings of being empowered, valued, and respected by the ACP. Geerse et al (2019) conducted a qualitative study that analyzed the serious illness conversations through a structured conversation guide between oncology clinicians and their patients.…”

“…Toguri et al (2020) explored cancer patients and their families' understanding, experience, and reflection on ACP through their qualitative study in Canada. Although this study had a small sample of four patients and four family members (not family of same cancer patients) and 10 medical and radiation oncologists.…”

“…The advancing strength and clinical practice model were used to assess the methodological strength of the evidence (Melnyk & Fineout‐Overholt, 2019). The strength of evidence among the studies varied and is consistent with level II ( n = 4) randomized control trials (Bernacki et al, 2019; Epstein et al, 2018; Tang et al, 2019; Walczak et al, 2017), level III ( n = 2) non‐randomized control trial (Brohard, 2017; Rodenbach et al, 2017), level VI ( n = 2) descriptive studies (Stegmann et al, 2020; Yoo et al, 2020), ( n = 5) qualitative studies (Epstein et al, 2015; Geerse et al, 2019; Kumar et al, 2020; Paladino et al, 2020; Toguri et al, 2020), and ( n = 2) mixed method studies (Agarwal et al, 2020; Michael et al, 2015).…”