Views of advanced cancer patients, families, and oncologists on initiating and engaging in advance care planning: a qual
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RESEARCH ARTICLE
Open Access
Views of advanced cancer patients, families, and oncologists on initiating and engaging in advance care planning: a qualitative study J. T. Toguri1, L. Grant-Nunn2 and R. Urquhart3,4*
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 outpatients 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. Keywords: Cancer, Advance care planning, End of life, Qualitative
* Correspondence: [email protected] 3 Nova Scotia Health Authority, Halifax, Nova Scotia, Canada 4 Department of Community Health and Epidemiology, Dalhousie University, Room 8-032, Centennial Building, 1276 South Park Street, Halifax, Nova Scotia B3H 2Y9, Canada Full list of author information is available at the end of the article © The Author(s). 2020 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and t
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