This could be your mother or your grandfather. Maybe someday, it will be you.
For more than 10 years, our team of health researchers, Canadian researchers at end-of-life network or CARENET, has been working to understand and improve palliative and end-of-life care in Canada.
We know that many older patients with serious illness want to maintain quality of life rather than prolong it. However, the use of aggressive life-sustaining technologies in this vulnerable population is common.
Instead of a peaceful end-of-life experience, they are receiving invasive medical treatments during their last days.
Too little, too late
A national, multi-year study involving seriously ill older Canadians revealed that even though 28 per cent of the participants stated a preference for “comfort care” (meaning no curative treatments), this was documented in only four per cent of their charts.
This discrepancy can lead to a poor end-of-life experience and an increase in family distress.
Why is this happening? Often, it comes down to a lack of communication. Even though studies have shown that seriously ill patients and families have identified end-of-life communication and decision-making as high priority targets for quality improvement, these conversations are typically “too little, too late and not great.”
The gap doesn’t just exist within the hospital setting. A 2014 Ipsos Reid survey revealed that 60 per cent of Canadians want their family doctor to talk to them about their preferences for care at the end of life, but only 26 per cent of primary-care physicians are comfortable having those discussions. Sixty-seven per cent of primary-care physicians said they need more resources and information.
These conversations are also rare in long-term care homes, even though death is commonplace in this setting.
It’s clear that we are failing to provide optimal care to older Canadians at the most vulnerable time of their lives.
A road map for conversations
A new three-year national study, called iCAN-ACP, aims to improve this situation by introducing and evaluating “advance care planning” tools. We hope this will result in more, earlier and better conversations between older adults, families and their health-care teams.
Advance care planning involves thinking about and communicating your preferences for care in a way that expresses your values. It also includes choosing someone to be your “substitute decision-maker,” someone who could speak for you and make decisions if you couldn’t speak for yourself.
The iCAN-ACP project, funded by the Canadian Frailty Network, has just been launched in long-term care homes, family doctors’ offices and hospitals across Canada, bringing together a team of 32 investigators from 16 universities, five international collaborators and 42 partner organizations.
The project will study conversation aids, including workbooks and interactive websites for older adults and their families, and conversation guides for health-care practitioners.
The “Serious illness conversation guide,” developed by colleagues from Ariadne Labs at Harvard Medical School, is an example of a conversation aid we will be studying. The guide gives practitioners a “road map” to having better and more person-centred conversations with patients who are facing serious illness, so that patients can receive care that is consistent with their goals.
We know from past research that advance-care planning can have a significant impact on end-of-life experiences for both patients and their families. But all too often, these conversations are not happening early or often enough.
iCAN-ACP will engage older Canadians living with frailty, and their families, as well as clinicians, health organizations and related patient associations — to evaluate several of these conversation aids.
Our goal is to identify valuable tools that will reduce unwanted treatments and ensure that patient voices are heard.