Patient Engagement

Supporting the Physical and Mental Health of Bereaved Families

I have two projects that I am hoping to advance as part of my AMS Phoenix Fellowship. These are projects that I have been working on and thinking about for some time, but that really needed dedicated time to develop more fully.

The first project aims to improve care for patients and family members at the time of death and during bereavement. Many individuals experience symptoms of severe or complicated grief after the loss of a loved one, and this can have important consequences for their health. In Canada, there is currently no system to identify those who are suffering and offer them help and compassion. I was part of a team who recently published national practice guidelines for the withdrawal of life support, including support for family members. You can learn more about it here. We have also completed a national, multicentre, mixed-methods study of bereaved family members, looking at their experience with grief and willingness to receive support in the months following their loss. The next step is to analyze the findings of this study and plan a program of research aimed at addressing the needs of bereaved family members. Although the analysis is not yet complete, it is clear that we will need to use a combination of different interventions aimed at informational, emotional, and social needs. It is also clear that the overwhelming majority of frontline healthcare providers would want to participate in screening and supporting bereaved family members, if given adequate time and training.  One of my goals this year will be to harness the expertise of our research team and the broader critical care research community to plan interventions and obtain funding for pilot studies, with the ultimate goal of a large, multicentre study. In addition, we will work to develop educational material for frontline staff to better support bereaved family members.

The second project aims to develop better training and system supports for communication and decision-making for seriously ill patients. Although communication is an important priority for patients and their family members, it is often not prioritized in medical education. We have developed and demonstrated the effectiveness of communication training techniques (e.g. simulation) to promote compassionate and sensitive communication about goals of care and resuscitation. But we have learned that medical trainees do not always bring this learning to the bedside, and there are many aspects of medical culture that undermine the use of compassionate communication in the clinical environment.

Part of improving communication in the clinical environment involves assessing the quality of communication that takes place at the bedside. We recently developed and piloted a tablet based system to allow patients and family members to give communication feedback to trainees that care for them. In the coming year, we are hoping to integrate this tool with faculty development and system supports to help ensure that communication skills are routinely assessed (and improved!) in the clinical environment.

For both of these projects, the next steps are slow but important. These are challenging areas to work in; the published literature is full of negative studies and ineffective interventions. By thinking critically about the results we have to date, and being pragmatic about what we can expect to achieve, we can better plan the next steps. My hope it that my AMS Phoenix Fellowship will allow me the time and opportunity to do that.

About the author

Dr. James Downar

Dr. Downar, is a Critical and Palliative Care Physician with both the University Health Network and Sinai Health Systems. He is also an Associate Professor in the Department of Medicine at the University of Toronto

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