Preparation for End-of-Life Decision Making in Mild Alzheimer's Disease

Alzheimer’s disease and related dementias (ADRD) are leading causes of death and affect over 5 million people in the U.S.1 ADRD cannot be effectively prevented or cured. ADRD are progressive, and memory loss and impairment of reasoning and judgment are the main symptoms.2 For this reason, people in the early stages of ADRD are encouraged to engage in advance care planning (ACP) while they are still competent to appoint a surrogate decision maker and meaningfully participate in ACP discussions with the surrogate.3,4 Yet only a minority (39%) of older adults with early cognitive impairment engage in ACP following the diagnosis.5 What underlies the urgency of our proposed work is that it is very difficult, if not impossible and possibly unethical, to engage people in ACP once their cognitive impairment has progressed to an advanced stage. A failure to engage in ACP before the window of opportunity closes (i.e. loss of decision making capacity) has serious adverse consequences; family members are left to make decisions regarding care transition, tube feeding, and other life-sustaining treatment,6-8 driven by a culture of technological imperative to deliver aggressive or futile medical care to very frail older adults.9,10 The vast majority of family members of patients with ADRD report not being prepared for these difficult decisions,11-13 and they experience considerable negative mental health sequelae after they face end-of-life decision making.12-23 To address these gaps, we will adapt and pilot test an efficacious ACP intervention, SPIRIT (Sharing Patient’s Illness Representation to Increase Trust), with patients with mild AD and their surrogates (NIH Stage I behavioral intervention development24 in PAS-17-027) to promote open, honest discussions while such discussions about end-of-life care are possible. SPIRIT is a brief, scalable patient- and family-centered ACP intervention based on the Representational Approach to Patient Education25,26 with a goal to promote cognitive and emotional preparation for end-of-life decision making for patients with a serious or life-threatening illness and their surrogates. Typical ACP involves giving brief information to a patient and family with instructions on preparing an advance directive (e.g., a living will). This approach often entirely lacks an opportunity for in-depth discussion for the patient to share values and preferences and to help the surrogate understand his/her role in substituted decision making. In stark contrast, SPIRIT focuses on having both the patient and the surrogate fully understand end-of-life decision making in anticipation of a loss of decision-making capacity.