Evidence of engagement with advance care planning for people affected by dementia in the United States

Abstract

Advance care planning (ACP) in its current form has been a key feature of the end-of-life policy context since the mid-1970s. Take-up of ACP varies dramatically across countries and over time. In the US, ACP is relatively well utilized, with evidence that as many as one-third of the adult population have prepared an advance directive (Yadav et al., 2017). Elsewhere the prevalence in usage of ACP forms of planning is lower. Research in Australia, for example, suggests just below 30% of older Australians had completed an ACP (Detering et al., 2019). Furthermore, in Canada around 20% of adults are said to have an ACP in written form (Teixeira et al., 2015). The prevalence of ACP also varies across conditions. A US survey of cancer patients highlighted stable trends in the use of "living wills" (Narang et al., 2015), while patients with renal disease tend to demonstrate lower usage (Luckett et al., 2014). With the global rise in the number of people affected by dementia expected to rise over the next 20 years, the debate about the provision of optimal palliative care and improved end-of-life experiences is being viewed as a critical area of concern and is focusing the minds of policy makers across the globe. There is some considerable evidence to suggest that ACP is beneficial to people with dementia in these endeavors (Robinson et al., 2011). There is evidence to suggest that when people with dementia use ACP, it reduces the risk of suboptimal care at the end of life, promotes early consideration of decisions to mediate the impact of reduced communication, as well as moderating the potential detrimental effect of multiple care setting transition (Bryant et al., 2019). Despite this, studies in the use of ACP centered on people with dementia also demonstrate variation in utilization. Some time ago, Garand et al. (2011) prospectively measured the use of ACP among a group of people with cognitive impairment over a 5-year period, noting that by the end of the study 39% of participants had completed some form of end-of-life planning, with younger participants being more likely to have done so. However, other studies demonstrate much lower levels of participation, sometimes as low as 8% (Lewis et al., 2015). It is gratifying then that Pettigrew et al. (2019) in their study of

The effect of a family-centered advance care planning intervention for persons with cognitive impairment and their family caregivers on end-of-life care discussions and decisions

“…There is a consensus among experts that ACP should be completed during the early stages of dementia, before an individual’s ability to consider the future is compromised [ 1 , 8 , 12 ]. Factors affecting the completion of ACP include personal characteristics such as education and age, and cultural factors such as ethnicity, social expectations, and EoL-care policies [ 13 ]. Not only is ACP low for PWCIs, but the percent of the population with mild to moderate cognitive impairment that has completed an AD in Western countries ranges from 9% [ 14 ] to 87% [ 4 ].…”