Advance Care Planning: Impact & Access

Tamara Sussman wants to talk about advance care planning. Actually, though, she wants other people to start talking about it. Sussman is an Associate Professor in the School of Social Work at McGill University. For the past several years, her research, funded by the Canadian Frailty Network, has focused on increasing the use of, impact of, and access to advance care planning by older Canadians living with frailty.

What is advance care planning?

“Advance care planning is the opportunity to think about, talk about, and if desired document preferences for future care, which can include end-of-life care,” says Sussman. “And those preferences can be medical, but they can also be psycho-social, as in ‘I want my family around, or very involved in decision making.’ This sort of thing.”

Sussman will also flesh out her answer by telling this kind of story:

A senior, who we will call Mark, is nearing the end of his life. He knows this, and he is also very clear that he wants to die in his long-term care home, if possible with his family around him. The problem is that Mark has never told his family, long-term care staff, or his care providers about his desire. And so on a day when his health takes a turn for the worse, Mark is rushed to hospital where tests are run, procedures are attempted to no avail, and the last day of Mark’s life is filled with stress and panic. He dies alone in the hospital.

Sussman says stories like this happen all the time. She points to research indicating that as many as a third of hospitalized seniors who are seriously ill receive invasive treatments they don’t want before they die, because they have never talked to anyone about their wishes in this regard, and nobody has ever asked them. She says it’s time those conversations start happening.

“It’s both a process and a product. Advanced care planning encompasses taking some time to think yourself about what would be important to you should your health take a turn for the worse,” says Sussman. “And then, have you had a chance to talk about it? Does the family member, to the best of their abilities, if they were faced with making decisions, would they have some sense of what the frail older person would have wanted them to decide on?”

Sussman’s research focuses on adults who are frail in long-term care homes. Adults with frailty are particularly vulnerable to downturns in health, and one in five adults with frailty die every year in a long-term care home. What the researchers did was give their subjects a “workbook”, a pamphlet, really, that encourages and supports older adults in thinking about and understanding their own wishes with regard to how they want their end-of-life care to look, and then expressing those wishes to those closest to them.

“What we’re finding is that families in particular find it really helpful. Residents often assume that their families know what they want. But when these conversations happen, the families go, God, I didn’t know that. I didn’t think to ask that. And they appreciate being a bit more armed with some information that will help them, because it’s such a burden to have to make decisions like that.”

Sussman’s work is part of a broader research project that includes not only long-term care but hospital and primary care as well, and is funded by CFN. Dr. John Muscedere is the Scientific Director of the Canadian Frailty Network (CFN). He welcomes the research into advance care planning.

“People who are living with frailty are particularly vulnerable to the kinds of decline that can trigger the need for big decisions quickly. That is just a sad truth,” says Dr. Muscedere. “The other sad truth is that when you’re in palliative care is not when you want to have to decide what your palliative care is going to look like.”