By Sharon Kaasalainen
and Tamara Sussman
Many people must make critical decisions for family and friends who are at the end of their lives. This can create a great deal of stress and burden. They must navigate the social and healthcare systems while coping with their impending loss and grief.
A large proportion of these situations occur in long-term care homes, where almost a third of residents die every year.
In addition, people must often make decisions for loved ones who have lost cognitive capacity. Families and friends struggle 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 have an entrenched belief that quantity of years is always 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 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, their family and facility staff members, including personal support workers, nurses, social workers, dietary aides, recreational therapists and other support staff.
We found that even Canadians in advanced age with the most fragile health, living in long-term care homes, have significant difficulty talking with their families about their end-of-life wishes and preferences for end-of-life care.
Long-term care residents 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 will be made by doctors based on previous discussions with the patient. Yet health and social-care providers, we found, are frequently unsure what conversations they’re 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 we need to engage long-term care residents and their substitute decision makers early, 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, 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 to create strategies for them to have these conversations earlier. And we 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 these discussions and learning what’s important to their loved ones in life and death. Topics include everything from the type of music 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’d had these conversations earlier.
We also found that such conversations are extremely beneficial for care staff. It provides them with reassurance and direction for supporting a good life and a good death for the residents and families 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. 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.