Heart failure unknowns a roadblock to managing health

(Press-News.org) Al Brommeland found a true partner in his wife Florence. Through 57 years of marriage they've proved a formidable team, swinging and bowing at square dances, kicking up dust in their clogs, and now in their golden years, taking daily strolls side by side.

When Al started experiencing irregular heart rhythm 12 years ago, the couple worked together to stay healthy. It hasn't been easy, both in terms of symptoms—emergency doctors stopped and restarted Al's heart eight times over the years—or finding answers to their questions about how to best manage his illness, recently diagnosed as congestive heart failure.

"To me, it was anxious times," Al, 82, said of his frequent trips to emergency and the periods preceding when he waited for his heart beat to fall into rhythm. That meant a lot of time spent wondering what was going to happen next—at home or in emergency. "There was one case where we were in emergency for 11 hours—and that was in the waiting room."

According to University of Alberta research published in the journal Heart, patients with heart failure and their families often lack basic knowledge about the condition and how they should manage their care between doctor visits. A systematic review of 49 studies, involving more than 1,600 patients and their caregivers, showed that this lack of knowledge leads to confusion, delays in seeking help, and uncertainty about the long-term outlook and how to manage their own care.

Heart failure "decimates quality of life"

"Heart failure decimates people's quality of life more than any medical condition. It's Canada's most costly, silent epidemic," said Alex Clark, associate dean of research in the Faculty of Nursing and the study's lead author. "It's the main reason seniors end up in the ER. Essentially, the research is showing people with heart failure are not doing the right things to take care of themselves."

Part of the problem, Clark explained, is heart failure is not well understood by many patients or their families. Heart failure is not a heart attack, though the latter can cause the condition. Heart failure refers to an overall decline in function in which blood flow can't meet the body's demands, a condition that afflicts 500,000 Canadians.

Symptoms vary from fatigue and shortness of breath to difficulty concentrating or elevated blood pressure. Someone with stage four heart failure can't walk across a room without being out of breath or work or get a good night's rest, Clark explained.

For the Brommelands, Al's low energy in the evening means he can't square dance or clog anymore. Managing his condition means tracking medical visits, following a strict no-salt diet and taking up to 10 medications and supplements, along with daily weigh-ins and checks for swelling in the leg—often a warning sign of irregular heartbeats—and regular calls for advice from the Heart Function Clinic at the Mazankowski Alberta Heart Institute.

Florence credits the clinic for turning Al's health around, finding answers to replace confusion.

"He saw a cardiologist once a year for a while, but there was a period of time where it was even less regular," said Florence. "For me, it was such a relief to be part of the Heart Function Clinic where you could phone someone, talk to someone, and that person knew exactly what was going on and could help you."

Clark said Alberta is generally doing a good job in helping patients manage their health compared with parts of Europe or the United States, but more can be done to include family members in care decisions and integrate services between cardiologists, pharmacists, family physicians and primary care networks. Hospitals can't possibly accommodate everyone with heart failure, he added, noting 50 per cent of seniors discharged from hospital return within a year.

"We need to do better in terms of giving them more support closer to home; that's more responsive to how they manage their condition."

INFORMATION: Clark's research was funded by the Canadian Institutes of Health Research.