By Sharon Kaasalainen and Tamara Sussman
Many people have been faced with having to make critical decisions for family and friends who were at the end of their lives. This can create a great deal of stress and burden as family members try to navigate the social and health care systems and succumb to their own impending loss and grief.
A large proportion of these events occur in long-term care homes where almost a third of residents die every year. To compound the issue, families are often faced with making decisions for their loved ones who have lost the cognitive capacity, leaving families and friends struggling with stress and guilt while trying to do what they feel is best.
Our society doesn’t want to talk about aging and death because we are entrenched in a belief that quantity of years is always to be preferred over quality of life. This has largely been driven by advancements in life-prolonging technology and treatments.
So when should we forgo these treatments and transition to “comfort care” only? When should medical staff focus on quality of end-of-life care instead of trying to make the patient live ever-longer? How can we alleviate stress and guilt?
We all need to start the conversations about end-of life-wishes earlier.
In our ongoing research, we interviewed residents of long-term care facilities along with their family members and staff members at the facility, including personal support workers, nurses, social workers, dietary aides, recreational therapists and other support staff.
What we found was that even Canadians in advanced age with the most fragile health who reside in long-term care homes have significant difficulty talking with their families about their end-of-life wishes and preferences for future end-of-life care.
Our interviews reveal that residents who have moved into long-term care facilities often feel they’ve lost their voice and the autonomy to make decisions for themselves. They expect their families to make important decisions on their behalf.
Interestingly, families expect these decisions would be made by doctors based on previous discussions with the patient. Yet health and social care providers, we found, are frequently unsure about what conversations they are “allowed” to engage in with patients and family members. In long-term care specifically, this uncertainty about who and what healthcare providers can talk about often precludes timely and open conversations about preferences for care down the road.
Our research also found that long-term care residents often fear having end-of-life conversations because they don’t want to burden or depress family members — or because they don’t know exactly what to talk about: “I would like to have this conversation but I don’t think my family would” or “I don’t even know what I should be talking about,” are common sentiments.
Families likewise tell us, “I want to know everything but I’m not sure my parent wants to talk about this.”
Our work indicates that we need to engage both long-term care residents and their substitute decision makers early on, preferably even before they enter a long-term care home. If we had more discussions about our care wishes and preferences earlier, when there is time, opportunity and less pressure to do so, we could save our loved ones, who are often tasked with difficult decisions, a whole lot of anxiety and heartache.
So we worked with families and created strategies for them to have these conversations earlier. And we also created workbooks and pamphlets to help them discuss end-of-life care together.
The result has been anything but depressing.
In fact, most families report relief at having had the opportunity to have these discussions and learn what remains important to their loved ones in life and in death. Topics covered include everything from they type of music that they enjoy to financial planning and a preferred location of death.
A common reaction is “now I don’t have to guess.” Most also suggest they wished they had had these conversations earlier.
Our research has also found that such conversations are extremely beneficial for staff too because it provides them with reassurance and direction for supporting a “good life and a good death” for the residents and families that they come to know very well.
It’s time to break the awkward silences. Let’s get everyone talking.
Sharon Kaasalainen and Tamara Sussman are Canadian Frailty Network (CFN) Investigators and expert advisors with EvidenceNetwork.ca. Sharon is an Associate Professor with the School of Nursing and is an Associate member of the Department of Family Medicine at McMaster University. Tamara is an Associate Professor with the School of Social Work at McGill University.