Author: Bianca Tétrault, Social Work Intern, McGill University, Montreal, Canada
Date of Publication: September 2021
Keywords: Dementia, Comfort care, Stuck points, End of life care decision making, social change, Compassionate understanding, Storytelling.
We remember things that create emotion. That is, we remember what we feel. This is exactly what happened to me when I had the chance to hear Dr Marcel Arcand, author of the Comfort Care at the End of Life Booklet, speak to healthcare workers and researchers in Montréal, Canada (May 2021).
Dr Arcand who practiced in nursing homes, encountered many families of nursing home residents with advanced dementia who were uncertain about what would be the best care for their loved one. Based on practice, research, and also personal experience, his co-authored booklet provides information about dementia and comfort care at the end of life. According to the National Institute on Aging, “comfort care is an essential part of medical care at the end of life. It is care that helps or soothes a person who is dying. The goals are to prevent or relieve suffering as much as possible and to improve quality of life while respecting the dying person’s wishes” . The Comfort Care Booklet is a core component of mySupport studie.
As a graduate student in the School of Social Work at McGill University, Canada, my journey into the world of dementia research and clinical gerontology is relatively new. However, my experience living with a loved one with dementia is years in the making. As Dr Arcand discussed end-of-life care in advanced dementia, I was transported back to the early days of my grandfather showing signs of memory loss, and the many emotions my family have felt since then.
Challenges communicating to families the importance of comfort care
Dr Arcand’s presentation opened with a rich discussion on the benefits and need for comfort care at the end-of-life, followed by an honest talk about the challenges that staff and family caregivers experience as they navigate advance care planning and end-of-life care needs. As the presentation unfolded, it was clear that staff felt a great burden helping families make decisions. One reiterated a line from Dr Arcand’s slides: “Although comfort care does not mean abandonment, many families think this to be true.” When participants began expressing, with heavy hearts, the struggles they counter engaging families “I can’t get the family to understand [the importance of comfort care]” and asking for guidance “the client is suffering- what do I do now?” I was struck by the realization that both families and staff become overwhelmed by the mass amount of emotions and information related to dementia care.
We all encounter stuck points (distressing doubts and concerns) as we strive to do ‘what is right’ for the person we are caring for. Dr Arcand explained that there are many reasons why families become stuck in the end-of-life care decision-making process. Being ‘stuck’ is often driven by feelings of abandonment, fear, grief, denial, sadness and much more. This sentiment rang true to me as I thought back to my grandmother’s struggles. For a long time, my grandmother felt embarrassed about my grandfather’s change in behaviours; concerned about what the neighbours would think, and how this diagnosis would affect his social standing. These feelings isolated her from others and kept her from accessing the supports that were waiting for her.
Supporting best interest care decision making
It is our responsibility to help families through this process as much as we can. As much as possible, we need to lean on each other for support. Dr Arcand stressed that until you are able to connect with a family and better understand what is making them stuck, moving the discussion about comfort care forward will be very difficult. To achieve connection, one must refrain from imposing values and beliefs about end-of-life care on others. For if we do, we risk pushing families away, making it harder to come to a collective agreement on care. This, however, is no small ask. Occasionally, we might have to change our focus and approach, and sometimes go against what we personally believe, to achieve a better connection with the family and to proceed to next steps.
Storytelling is about effecting positive social change. Through his writing and talks, Dr Arcand imparts that if clinicians, carers, and family members practice patience and compassionate understanding, we can navigate emotions and stuck points to provide appropriate end-of-life care for persons with dementia.
With time, my family eventually found their rhythm and the words to talk about the diagnosis and their emotions. We still experience ‘sore’ spots regarding my grandfather’s care, but my grandmother no longer hides the truth from the world and is better able to ask for help when needed. Time, patience, and compassionate understanding helped us arrive where we are today.
 National Institute on Aging. (2017, May 17). Providing Care and Comfort at the End of Life. https://www.nia.nih.gov/health/providing-comfort-end-life [accessed 18 Aug 2021]
Meet the author: Bianca Tétrault, Social Work Intern, McGill University, Montreal, Canada
Bianca is a Registered Social Worker with extensive clinical experience in the field of trauma care. While completing her graduate degree, her grandfather was diagnosed with dementia. This prompted Bianca to shift her area of educational focus to the field of aging and dementia care. Bianca has successfully submitted her Independent Study Project The Experiences of Non-Medical Community and Health Care Based Staff Administering Advance Care Planning with Persons with Dementia: Challenges, Opportunities and Solutions with the support of Project Lead and Associate Professor Dr Tamara Sussman.