Phoenix Fellows and Grantees

Dr. Linda Lee

Enabling Compassionate Advance Care Planning in Dementia Care
MD, CCFP(COE), FCFP, MCLSC(FM)
Co-sponsor Organization
The Centre for Family Medicine, Family Health Team

Enabling Compassionate Advance Care Planning in Dementia Care

The objective of my project is to help front-line healthcare professionals to engage in timely, sensitive, person-centred Advance Care Planning (ACP) discussions and documentation for older adults with dementia and their care partners, ensuring healthcare decisions made near end-of-life reflect the individuals’ goals, values and preferences. Research suggests limited evidence to date for the effectiveness of ACP in persons with dementia in terms of ACP documentation and healthcare use, and studies suggest relatively few persons with dementia have ACP in place.  Meaningful discussions and documentation of preferences can help to reduce uncertainty and experience of emotional stress when the Substitute Decision Maker, frequently a family caregiver, is faced with complex decision-making on the person’s behalf near end-of-life. Knowledge of the person’s values and preferences can help to guide future health care decision-making, thereby potentially averting unwanted medical investigations and interventions that are of limited benefit near end of life and not aligned with the individual’s goals and values.  The aim of this project to create a practical approach for compassionate Advance Care Planning discussions with older adults living with dementia, for whom these discussions present unique challenges.  Significant factors include the need for discussions at earlier stages of the illness while persons still have the capacity to make decisions and express their preferences for health care treatments,  uncertain course of the condition with difficulty prognosticating the final phase of this terminal illness, and need for effective documentation that can meaningfully guide critical end-of-life decisions made on that person’s behalf, potentially many years into the future. With dissemination of this knowledge to front-line healthcare practitioners provincially and nationally, it is expected that this project will enable humane, person-centered care near end-of-life which is respectful of the individual’s preferences, values, and goals.