Quality of life vs. prolonged life

Quality of life vs. prolonged life

By Dr. John You, Internist, Hamilton Health Sciences and Associate Professor, McMaster University

Research shows that up to 70 per cent of seriously ill, hospitalized older Canadians are receiving invasive treatments that they don’t want.

This could be your mother or your grandfather. Maybe someday, it will be you.

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 experience, they are receiving unwanted invasive medical treatments, even 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 patient 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 communication and decision-making as high priority targets for quality improvement, conversations about what matters most to patients when they are faced with serious illness are typically “too little, too late, and not great.”

Conversations about what matters most to patients when they are faced with serious illness 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 during serious illness, 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 missing opportunities to have important conversations with older Canadians at the most vulnerable time of their lives.

A road map for conversations

We’re hoping to change this trend.

I’m leading a new three-year national study, called iCAN-ACP in collaboration with colleagues in CARENET, the Canadian Researchers at End of Life Network. The project aims to address these problems 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.

Our goal is to identify valuable tools that will reduce unwanted treatments and ensure that patient voices are heard.

The project will study conversation aids, including workbooks and interactive websites for older adults and their families, and conversation guides for health-care practitioners.

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.