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

L Grant-Nunn,J T Toguri,R Urquhart

doi:10.1186/s12904-020-00655-5

Abstract

BackgroundAdvance 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.MethodsThis 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.ResultsThemes 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.ConclusionsStakeholders 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.

Highlights

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
Advance care planning (ACP) is a process in which a patient reflects upon their goals, values and beliefs, allowing them to make decisions about their future medical treatments that align with their goals and values [1]
Due to its complicated nature and the involvement of multiple stakeholders, including patients, family members and medical staff, a systematic approach should be implemented during ACP discussions to ensure these conversations are initiated and that patients have a thorough understanding of their future care options [3]

Summary

Introduction

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. Advance care planning (ACP) is a process in which a patient reflects upon their goals, values and beliefs, allowing them to make decisions about their future medical treatments that align with their goals and values [1]. Family members of patients who have undergone ACP report decreased stress, anxiety and depression during the bereavement period [3] Despite these positive outcomes, less than 50% of elderly Canadian patients have engaged in ACP [5]. In the United States, from 2000 to 2012 there were no changes in the proportion of individuals who had engaged in EOL discussions, while there was an increase in patients who had defined a durable power of attorney [7] This highlights there has been little increase in the number of patients who have engaged in ACP over time, despite research demonstrating the beneficial outcomes of ACP for both patients and family members as highlighted above [3, 8]

Methods

Results

Conclusion