Advance care planning encourages Albertans to think about their wishes for the future

Sep 22, 2017

Most of us don’t like to think about falling ill or dying, especially when we’re healthy. Researchers, however, say this is exactly when we need to think about how we want others to care for us in the event of illness, disease or disability.

About 70 per cent of people need some kind of decision made when they’re seriously unwell, but are unable to speak for themselves. This is because they’re too fatigued or overwhelmed, or because illness is affecting their ability to think or speak.Dr. Jessica Simon, head of the Division of Palliative Medicine at the University of Calgary (UCalgary)

Communicating our wishes to our loved ones while we’re healthy ensures they can speak for us. As a result, we’re more likely to receive healthcare that follows our individual values, beliefs, and preferences.

“It’s so important that we have these conversations with the people who know us best and can guide a healthcare team during an emergency,” Simon says. And even if we never lose the ability to speak for ourselves, thinking about our healthcare wishes now can help us make tough decisions later, Simon adds.

Having difficult conversations with loved ones now and documenting your wishes can also ease the burden on the people you care about: “We always say that advance care planning is a gift to friends and family,” Simon says. “It can strengthen our relationships as we get to know ourselves better and allow others to get to know us through a series of conversations about our healthcare wishes. And, since our perspective, values and wishes may change as we age, it’s important to revisit our advance care plan throughout our lives.”

Advance care planning and goals of care designations

Advance care planning describes the process of thinking about, talking about, and documenting your wishes for future healthcare, Simon says. Essentially, it asks, “Who would speak for me if I couldn’t speak for myself and what do I want that person to know about my hopes and fears for my health?”

In 2014, Alberta became the first province to have a province-wide advance care planning policy, encouraging healthcare providers to talk with patients to learn about their care preferences sooner.

Alberta has also introduced a medical order called the goals of care designation, which describes your healthcare wishes. Created in Calgary in 2008, this system has replaced “Do not resuscitate” orders to better guide the focus of a person’s healthcare. The designation can include a focus on medical care (interventions to cure or manage an illness), comfort care (pain management and other comforts during a life-limiting illness), or resuscitative care (attempting to prolong life with resuscitation and intensive care). Patients can carry their goals of care order, advance care plan and other documents such as their medication list and will in a Green Sleeve, a simple folder available from Alberta Health Services.

“It provides a nuanced way to take a person’s wishes and values, put them in the context of their medical illness and communicate to other healthcare providers in a rapid fashion,” Simon says.

“Alberta’s groundbreaking advance care planning work builds on its internationally recognized research”, says Dr. Neil Hagen, professor emeritus at UCalgary’s Cumming School of Medicine.

Unfortunately, a policy alone can’t guarantee widespread adoption of the practice. “It’s tough to implement because there are barriers,” he says. These can include lack of knowledge about advance care planning, confusion about how to go about it, anxiety around discussing illness or death, cultural values and much more.

Understanding the barriers

To better understand these barriers, Hagen and Simon are co-leading a research program together with Konrad Fassbender, a University of Alberta professor of both palliative care and health economics. The five-year research program is funded by Alberta Innovates and ultimately aims to engage more Albertans in advance care planning. Fassbender explains that the focus of the research is knowledge translation, which means the team is working in tandem with AHS: “By working together, there’s an opportunity to customize the research in order to maximize its value.”

A significant portion of the work has focused on understanding how Albertans and healthcare providers think about advance care planning. Hagen explains that while many people aren’t familiar with the term, most understand the general concept. In a telephone survey conducted in 2013, only 20 per cent of adult Albertans surveyed could define advance care planning, but 60 per cent had previously spoken with a family member about their preferences for resuscitation.

The team has also met with different populations of patients, healthcare providers, lawyers, cultural groups, faith communities and others across Alberta to understand attitudes around advance care planning and what people need to start talking. “What we’ve heard is that there’s a real interest in having these conversations,” Hagen says. The trouble is that most people are confused about how to go about it. Patients, for instance, often assume doctors will begin the conversation, while doctors worry if it’s appropriate for them to broach the topic. “There’s a Canadian politeness about it: who is going to break the ice and being overly concerned that someone is going to be offended,” he says.

Hagen and his colleagues are examining ways to make the conversations easier. Research findings suggest that healthcare providers might benefit from having a script or talking points to guide their discussions with patients.

The team also discovered that patients find informational videos (such as those available at meaningful when they are paired with discussions with their healthcare providers. With one year left in the program, the team is still coming up with recommendations. “What we’ve found is that there are many ways that we can do a better job of making these conversations happen,” Hagen says.

A cultural shift

Despite Alberta’s tapestry of different cultures and perspectives, the research shows that many of us share an appreciation for the value of planning ahead and a reluctance to talk about sickness and death. More Albertans will plan for their health when our culture shifts to become more comfortable talking about dying and death.

Advance care planning is fundamentally about giving patients control over their own care—a long-standing pillar of Alberta’s healthcare system.

Written by Caitlin Crawshaw (originally appeared in Apple Magazine, Fall 2017)