Preparation for End-of-Life Decision Making in Mild Alzheimer's Disease ABSTRACT Alzheimer's disease (AD) is a leading cause of death and affect over 5 million people in the U.S. AD cannot be effectively prevented or cured. For those with advanced AD, intensive or burdensome end-of-life care is common. Nearly 41% undergo at least one intensive intervention (e.g., tube feeding, mechanical ventilation) in the last 3 months of life, which may prolong life but not address quality of life or quality of dying. People in the early stages of AD 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. Yet only a minority of older adults with early cognitive impairment engage in ACP following the diagnosis. A failure to engage in ACP before the window of opportunity closes (i.e. before 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, often driven by a culture of technological imperative to deliver aggressive or futile medical care to very frail older adults. These family members experience considerable negative mental health sequelae after they face end-of-life decision making. 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 development) to promote open, honest discussions while such discussions about end-of-life care are possible. Our goal is to produce an effective and maximally implementable ACP intervention for patients with mild AD and their surrogates.
Specific Aim 1 is to adapt SPIRIT (in person) to target patients with mild AD and their surrogates through a process of modification-pretesting-refinement using stakeholders (patients, family caregivers, and clinicians) and experts, including adapting the delivery mode to interactive web-based videoconferencing (SPIRIT-remote).
Specific Aim 2 is, in a 3-group RCT with 120 patient-surrogate dyads, to evaluate the feasibility and acceptability of SPIRIT in-person and SPIRIT-remote, and their preliminary efficacy compared to usual care on preparedness outcomes for end-of-life decision making (dyad congruence on goals of care, patient decisional conflict, and surrogate decision-making confidence) shortly after the intervention. We will also evaluate whether SPIRIT-in person and SPIRIT-remote result in an embodiment of the patient's wishes by 1 year post intervention, and interview a sample of surrogates at 1 year to assess the perceived impact of the intervention conditions (secondary aims). Preliminary efficacy data will be analyzed using mixed effects regression models. Qualitative analysis will use content and thematic techniques. This Stage I behavioral intervention development trial of SPIRIT will generate novel insights to fill the critical void of knowledge regarding how to improve ACP for people with mild AD who will progress to an advanced stage of the disease in the foreseeable future.
The proposed study will adapt and pilot test an efficacious advance care planning interventions, SPIRIT (Sharing Patient?s Illness Representations to Increase Trust), with patients with mild Alzheimer?s Disease and their surrogates to promote open, honest discussions while such discussions about end-of-life care are possible.
| Song, Mi-Kyung; Ward, Sandra E; Hepburn, Kenneth et al. (2018) SPIRIT advance care planning intervention in early stage dementias: An NIH stage I behavioral intervention development trial. Contemp Clin Trials 71:55-62 |
