Advance Care Planning in Cognitively Impaired Older Adults

Jane deLima Thomas, MD; Sandra Sanchez-Reilly, MD, MSci; Rachelle Bernacki, MD, MS; Lynn O'Neill, MD; Laura J. Morrison, MD; Jennifer Kapo, MD; Vyjeyanthi S. Periyakoil, MD; Elise C. Carey, MD

Disclosures

J Am Geriatr Soc. 2018;66(8):1469-1474. 

In This Article

Abstract and Introduction

Abstract

Older adults with cognitive impairment face many healthcare challenges, chief among them participating in medical decision-making about their own health care. Advance care planning (ACP) is the process whereby individuals communicate their wishes for future care with their clinicians and surrogate decision-makers while they are still able to do so. ACP has been shown to improve important outcomes for individuals with cognitive impairment, but rates of ACP for these individuals are low because of individual-, clinician-, and system-related factors. Addressing ACP early in the illness trajectory can maximize the chances that people can participate meaningfully. This article recommends best practices for approaching ACP for older adults with cognitive impairment. The importance of providing anticipatory guidance and eliciting values to guide future care to create a shared framework between clinicians, individuals, and surrogate decision-makers is emphasized. It is recommended that ACP be approached as an iterative process to continue to honor and support people's wishes as cognitive impairment progresses and increasingly threatens independence and function. The article describes effective strategies for assessing decision-making capacity, identifying surrogate decision-makers, and using structured communication tools for ACP. It also provides guidelines for documentation and billing. Finally, special considerations for individuals with advanced dementia are described, including the use of artificial hydration and nutrition, decisions about site of care, and the role of hospice care.

Introduction

As Americans live longer, clinicians in the United States are caring for increasing numbers of older adults with cognitive impairment. In 2050, it is projected that the population aged 65 will be 83.7 million, double what is is currently,[1] and one large study estimated that 22.2% of Americans aged 71 and older have cognitive impairment without dementia.[2] Individuals with cognitive impairment face many healthcare challenges, chief among them participating in medical decision-making about their own health care.

Given the likelihood of further cognitive decline, it is important for individuals with cognitive impairment to communicate their wishes for future care with their families or surrogate decision-makers (surrogates) while they are still able to do so. This process is known as advance care planning (ACP), the purpose of which is to "help ensure that people receive medical care that is consistent with their values, goals and preferences during serious and chronic illness."[3] It has been demonstrated that ACP improves important outcomes for individuals with cognitive impairment, enabling them to plan for the future and communicate their wishes while also decreasing anxiety and reducing hospitalizations and tube feeding.[4]

Rates of ACP are low in individuals with cognitive impairment. In one study, only 39% had initiated ACP in the 5 years after diagnosis.[5] Challenges to ACP are well documented and include individual-, clinician-, and system-related factors.[6] In individuals with cognitive impairment, challenges in prognostication, assessing decision-making capacity, and working with surrogates further compounded these challenges (Figure 1). Consequently, conversations in which clinicians attempt to define a medical plan of care that reflects the individual's wishes and clinical realities often occur after the individual has lost his or her ability to participate meaningfully. It is therefore imperative that clinicians caring for individuals with cognitive impairment familiarize themselves with best practices for approaching ACP early in the disease trajectory (Table 1).

Figure 1.

Barriers to advance care planning (ACP) fall into 3 categories: individual-, clinician-, and system-related factors. Some barriers are common to everyone, and some are specific to individuals with cognitive impairment. HCP = health care proxy.

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