Abstract
BackgroundDespite the perceived ethical, personal and health service benefits of advance care planning (ACP), the extent to which older and seriously ill Australian inpatients have considered future health decisions remains uncertain. This study aimed to determine in a sample of older and seriously ill inpatients, the proportion who had: 1) engaged in four advance care planning (ACP) activities; 2) not engaged in ACP activities but wanted to; and 3) reasons why they had not engaged.MethodsCross-sectional face-to-face standardised interview survey with inpatients in a tertiary referral centre who were either: aged 80+ years; aged 55+ years with progressive chronic disease(s); or judged by treating clinicians as having a life expectancy of less than 12 months. Patients indicated whether they had engaged in four ACP activities: (1) appointed medical substitute-decision-maker(s), (2) recorded end-of-life wishes in an advance directive or care plan; and talked about their end-of-life wishes with their: (3) support persons and/or (4) doctors. Patients who had not engaged in activities were asked whether they wished this to occur and reasons why.ResultsOne hundred eighty-six inpatients consented to the study (80% of approached). Of these, 9% (n = 16) had engaged in four ACP activities; 27% (n = 50) had not engaged in any. Half (n = 94, 52%) had appointed a medical substitute-decision-maker, 27% (n = 50) had recorded wishes in an advance directive or care plan, 51% (n = 90) had talked about their end-of-life wishes with support persons and 27% (n = 48) had talked with their doctor. Patients who wanted to, but had not, engaged in the four ACP activities were unaware they could record wishes or appoint decision-makers, or indicated providers had not initiated conversations.ConclusionRelatively few inpatients had engaged in all four ACP activities. More inpatients had discussed end of life issues with family and appointed substitute decision makers, than completed written documents or talked with doctors. Community education and a more active role for community and hospital-based providers in supporting patients and families to collaboratively resolve end-of-life decisions may increase the probability wishes are known and followed.
Highlights
Despite the perceived ethical, personal and health service benefits of advance care planning (ACP), the extent to which older and seriously ill Australian inpatients have considered future health decisions remains uncertain
Much of the available data on Advance care planning (ACP) has been obtained in the United States of America (USA) over the past three and a half decades, with the reported prevalence of advance care directive ownership ranging from 26% to as high as 70% among those aged 65 years or over [9]
Engagement in four advance care planning (ACP) activities Figure 1 presents the number of ACP activities patients self-reported they had engaged in (i.e. talked about their end-of-life wishes with support person(s), talked about their end-of-life wishes with doctor, recorded wishes in an advance directive or care plan and/or appointed a medical substitute-decision-maker)
Summary
Personal and health service benefits of advance care planning (ACP), the extent to which older and seriously ill Australian inpatients have considered future health decisions remains uncertain. A systematic review reported that many frail and older people who would like to engage in advance care planning are not offered this opportunity [7]. Such discussions are often delayed until a person is imminently dying [8], even though an estimated 40% of people will lack capacity to participate in decisions in these circumstances. Overseas findings may not generalise to the Australian environment given differences in health care delivery and political and societal norms [2]
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