Advance Care Planning and Decision-Making in a Home-Based Primary Care Service in a Canadian Urban Centre

Abstract

BackgroundAdvance care planning (ACP) is a process that enables individuals to describe, in advance, the kind of health care they would want in the future, and has been shown to reduce hospital-based interventions at the end of life. Our goal was to describe the current state of ACP in a home-based primary care program for frail homebound older people in Vancouver, Canada. We did this by identifying four key elements that should be essential to ACP in this program: frailty stage, documentation of substitute decision-makers, and decision-making with regard to both resuscitation (i.e., do not resuscitate (DNR)) and hospitalization (i.e., do not hospitalize (DNH)). While these elements are an important part of the ACP process, they are often excluded from common practice.MethodsThis was a cross-sectional, observational study of data abstracted from 200 randomly selected patient electronic medical records between July 1 and September 30, 2017. We describe the association between demographic characteristics, comorbidities, and four key elements of ACP documentation and decision-making as documented in the clinical record using bivariate comparison, a logistic regression model and multiple logistic regression analysis.ResultsIn 73% (n=146) of the patient records, there was no explicit documentation of frailty stage. Sixty-four per cent had documentation of a substitute decision-maker. Of those who had their preferences documented, 90.6% (n=144/159) indicated a preference for DNR, and 23.6% (n=29/123) indicated a preference for DNH. In multiple regression modeling, a diagnosis of dementia and older age were associated with documentation of a DNR preference, adjusted odds ratio (AOR) = 4.79 (95% CI 1.37, 16.71) and AOR = 1.14 (95% CI 1.05, 1.24), respectively. Older age, male sex, and English identified as the main language spoken were associated with a DNH preference. AOR = 1.17 (95% CI 1.06, 1.28), AOR = 4.19 (95% CI 1.41, 12.42), and AOR = 3.42 (95% CI 1.14, 10.20), respectively.ConclusionsClinician documentation of some elements of ACP, such as identification of a substitute decision-maker and resuscitation status, have been widely adopted, while other elements that should be considered essential components of ACP, such as frailty staging and preferences around hospitalization, are infrequent and provide an opportunity for practice improvement initiatives. The significant association between language and ACP decisions suggests an important role for supporting cross-cultural fluency in the ACP process.

Disclosure and plan of care at end of life: Perspectives of people with intellectual disabilities and families in Ireland

“…Kastbom, Milberg and Karlsson (2019) and Huggins et al. (2019) reported similar findings, suggesting that service users who receive care consistent with their wishes and preferences are satisfied with their care.…”

Advance Care Planning for Seniors Diagnosed with Dementia: A Scoping Review of the Canadian Literature

“…The findings from this review demonstrate the usefulness of exploring how Canadian seniors living with dementia might be best enabled to partake in ACP, with the support of caregivers and HCPs alike. Importantly, our findings highlight the extent to which older Canadian adults have completed ACP or thought about their health care wishes in the event they became incapacitated (Bravo et al, 2003(Bravo et al, , 2011(Bravo et al, , 2017Brink et al, 2008;Cramer et al, 2001;Dyason et al, 2015;Garrett et al, 2008;Goodridge, 2010;Huggins et al, 2019;Jeznach et al, 2015;Nuhn et al, 2018;Tanuseputro et al, 2019). Although many individuals have thought about ACP or discussed their preferences informally, few have actually proceeded to formally documenting these wishes.…”

“…A total of 12 of the 29 sources (41%) discussed the extent to which Canadian seniors and their caregivers engaged in ACP in the event of decisional incapacity (Bravo, Dubois, & Pâquet, 2003; Bravo et al, 2011; Bravo, Sene, & Arcand, 2017; Brink, Smith, & Kitson, 2008; Cramer, Tuokko, & Evans, 2001; Dyason Simon, & Martin, 2015; Garrett, Tuokko, Stajduhar, Lindsay, & Buehler, 2008; Goodridge, 2010; Huggins et al, 2019; Jeznach, Tuokko, Garcia-Barrera, & Stajduhar, 2015; Nuhn et al, 2018; Tanuseputro et al, 2019). Four studies examined the extent to which older adults considered or had already engaged in ACP (Bravo et al, 2003, 2011; Cramer et al, 2001; Garrett et al, 2008).…”

The Association between Home Healthcare and Burdensome Transitions at the End-of-Life in People with Dementia: A 12-Year Nationwide Population-Based Cohort Study

“…HHC with longer duration, higher frequency, or that was provided continuously closer to the time of death may be factors indicating a better continuity of care (CoC) [ 34 ], and CoC is related to fewer hospitalisations and ER visits for people with dementia in the US Medicare system and a non-HHC population in Taiwan [ 35 , 36 ]. Continuous HHC may enhance the communication and relationship between patients, family members, and medical professionals and facilitate the ACP of substitute decision-makers and decision-making regarding do-not-resuscitation and do-not-hospitalise [ 21 , 37 , 38 ]. The obligated 24-h telephone support for clients in the Taiwanese HHC programme, which offers basic triage and care advice, may also contribute to the reduction of transitions [ 39 ].…”