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. We sought 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. Methods This was a qualitative descriptive study in Nova Scotia, Canada with oncologists, advanced cancer out-patients and their family members. 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. Conclusions 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 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).…”

“…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…”

Impact of self-decision to stop cancer treatment on advanced genitourinary cancer patients

“…Regarding the problem with ACP, Toguri et al evaluated the oncologist's views on ACP and reported that many oncologists found difficulty in determining an appropriate time of initiating ACP. [ 33 ] It has also been reported that if ACP was initiated too early, the decisions would be ambiguous, and if it were too late, it would be difficult to perform ACP itself. [ 34 ] Although the presence or absence of ACP could not be evaluated in this study, there was a 6-fold difference in post-cancer treatment prognosis between the self-decision group and the family's decision group.…”

Role of the community nurse in supporting person-centred end of life care

“…While patients and families may recognise the importance of advance care planning, some may not feel comfortable initiating discussions about this with healthcare practitioners (Toguri et al 2020). The reasons for this discomfort may include the stigma around death and dying, religious beliefs, patient and family attitudes towards dying, different cultural beliefs among family members, family dynamics, and physical health issues such as confusion (Green et al 2015).…”