How to navigate EOL discussions with patients with dementia
EOL discussions with patients with dementia become even more complex and warrant specific discussion because one must consider the timing of such discussions, 2,28,29 the trajectory of the disease and how that affects the patient’s capacity for EOL conversations, and the critical importance of engaging caregivers/surrogate decision makers in these discussions. 2 ACP provides an opportunity for the physician, patient, and caregiver/surrogate to jointly explore the patient’s values, beliefs, and preferences for care through the EOL as the disease progresses and the patient’s decisional capacity declines.
Ensure meaningful participation with timing. EOL discussions should occur while the patient has the cognitive capacity to actively participate in the planning process. A National Institutes of Health stage I behavioral intervention development trial evaluated a structured psychoeducational intervention, known as SPIRIT (Sharing Patient’s Illness Representation to Increase Trust), that aimed to promote cognitive and emotional preparation for EOL decisions for patients and their surrogates.28 It was found to be effective in patients, including those with end-stage renal disease and advanced heart failure, and their surrogates.28 Preliminary results from the trial confirmed that people with mild-to-moderate dementia (recent Montreal Cognitive Assessment score ≥ 13) are able to participate meaningfully in EOL discussions and ACP.28
Song et al29 adapted SPIRIT for use with patients with dementia and conducted a feasibility study with 23 patient-surrogate dyads.The mixed-methods study involved an expert panel review of the adapted SPIRIT, followed by a randomized trial with qualitative interviews. All 23 patients with dementia, including 14 with moderate dementia, were able to articulate their values and EOL preferences somewhat or very coherently (91.3% inter-rater reliability).29 In addition, dyad care goal congruence (agreement between patient’s EOL preferences and surrogate’s understanding of those preferences) and surrogate decision-making confidence (comfort in performing as a surrogate) were high and patient decisional conflict (patient difficulty in weighing the benefits and burdens of life-sustaining treatments and decision-making) was low, both at baseline as well as post intervention.29 Although preparedness for EOL decision-making outcome measures did not change, people with dementia and their surrogates perceived SPIRIT to be beneficial, particularly in helping them be on the same page.29
The randomized trial portion of the study (phase 2) continues to recruit 120 patient-surrogate dyads. Patient and surrogate self-reported preparedness for EOL decision-making are the primary outcomes, measured at baseline and 2 to 3 days post intervention. The estimated study completion date is May 31, 2022.30
Evidence-based clinical guidance can improve the process. Following the Belgian Centre for Evidence-Based Medicine’s procedures as a sample methodology, Piers et al2 developed evidence-based clinical recommendations for providers to use in the practical application of ACP in their care of patients with dementia.The researchers searched the literature; developed recommendations based on the evidence obtained, as well as their collective expert opinion; and performed validation using expert and end-user feedback and peer review. The study resulted in 32 recommendations focused on 8 domains that ranged from the beginning of the process (preconditions for optimal implementation of ACP) to later stages (ACP when it is difficult/no longer possible to communicate).2Specific guidance for ACP in dementia care include the following:
- ACP initiation. Begin conversations around the time of diagnosis, continue them throughout ongoing care, and revisit them when changes occur in the patient’s health, financial, or residential status.
- ACP conversations. Use conversations to identify significant others in the patient’s life (potential caregivers and/or surrogate decision makers) and explore the patient’s awareness of the disease and its trajectory. Discuss the patient’s values and beliefs, as well as their fears about, and preferences for, future care and the EOL.
- Role of significant others in the ACP process. Involve a patient’s significant others early in the ACP process, educate them about the surrogate decision-maker role, assess their disease awareness, and inform them about the disease trajectory and anticipated EOL decisions. 2
Continue to: Incorporate and document patients' values and preferences with LEAD