Incorporate and document patients’ values and preferences with LEAD.Dassel et al31 developed the Life-planning in Early Alzheimer’s and Dementia (LEAD) tool, which is a validated dementia-focused EOL planning tool that can be used to promote discussion and document a patient’s care preferences and values within the context of their changing cognitive ability.Dassel et al31 used a 4-phase mixed-method design that included (1) focus groups of patients with early-stage dementia and family caregivers, (2) clinical utility evaluation by content experts, (3) instrument completion sampling to evaluate its psychometric properties, and (4) additional focus groups to inform how the instrument should be used by families and in clinical practice.Six scales with high internal consistency and high test-retest reliability were identified: 3 scales represented patient values (concern about being a burden, the importance of quality [vs length] of life, and the preference for autonomy in decision-making) and 3 scales represented patient preferences (use of life-prolonging measures, controlling the timing of death, and the location of EOL care).31
When having EOL discussions with patients with dementia, one needs to consider the timing of such discussions and the trajectory of the disease.
The LEAD Guide can be used as a self-assessment tool that is completed individually and then shared with the surrogate decision maker and health care provider.32 It also can be used to guide conversations with the surrogate and physician, as well as with trusted family and friends. Using this framework, family physicians can facilitate EOL planning with the patient and their surrogate that is based on the patient’s values and preferences for EOL care prior to, and in anticipation of, the patient’s loss of decisional capacity.31
Facilitate discussions that improve outcomes
Conversations about EOL care are taking on increased importance as the population ages and treatments advance. Understanding the concerns of patients and their surrogate decision makers, as well as the resources available to guide these difficult discussions (TABLE), will help family physicians conduct effective conversations that enhance care, reduce the burden on surrogate decision makers, and have a positive impact on many clinical outcomes.
CORRESPONDENCE Shirley Bodi, MD, 3000 Arlington Avenue, Department of Family Medicine, Dowling Hall, Suite 2200, University of Toledo College of Medicine and Life Sciences, Toledo, OH 43614; Shirley.Bodi2@utoledo.edu
