Care Delivery

Navigating the Healthcare Journey

When speaking about their experiences with heart failure, women spoke of navigating a health care system with issues of access to care and care delivery. Access to care is addressed in a separate summary [see our page on Access] and relates to how accessible heart health services and trained expert health care providers were, whether available locally, or not – and whether women had to travel somewhere else for care. In this summary about navigating care delivery, women spoke about their experiences of how they actually got care through healthcare providers, programs, services and/or different systems of care.

 

Care Delivery

In Barbara’s experience, care delivery within the Canadian system can appear rather random, with the types and quality of care dependent on who is treating them, where they live, and how different people present.

 

Consistency of Care

Women described care that was highly variable and inconsistent across settings, geography and across health care providers. Women who had heart conditions from a young age or were born with identified cardiac problems felt as though they had always had easy access to a specialized system that responded to their needs. Lori says “I’ve been very lucky and I think it’s just because I was born with heart disease and heart failure because we specifically have our own hospitals and our own doctors that specialize in our care.” Other women, who present to doctors or emergency departments with symptoms, struggle to access the same system of expert care. Even the way a woman arrives at the emergency will result in different care and treatment.

The difficulty accessing services in the community, in comparison to the hospital was addressed by one woman who was formerly a nurse.

 

Roles, Communication, and Coordination of Care

Sorting out who is in charge and making sure everyone is on the same page was an important issue for people who lived far away from their specialist teams. Often the role of coordinator falls to the family doctor who acts as a liaison between the specialists and can help women understand test results or provide education. Louise says her current “family doctor follows a lot. She gets copies of everything. And so she keeps me up to date.” However, her former family doctor “wanted nothing to do with the heart.” Other women talked about family doctors who are just not available enough to deliver prompt care.

When women didn’t live close to an urban centre, sometimes a local cardiologist assumed the coordinator role to liaise with the more expert team elsewhere. Women we spoke with told us they felt that the smooth integration of more expert care with local primary care providers resulted in more effective care for them as patients.

 

Virtual Care

Women experienced rapid changes in care delivery during the COVID-19 pandemic, when virtual methods of communicating and receiving care were introduced in some areas. To read more about the impact of COVID-19 on women’s experiences of heart failure, see our page on COVID Challenges. Some women were very positive about this shift to virtual care, using it to access treatments, share information and to communicate, but everyone we spoke to commented that in-person care was still essential.

But others we spoke with did not feel that virtual care or phone consults were satisfying. Sharon1 says “I’ve had some telephone consults, which are really not very satisfying both for you and the doctor.” Lillian said “I met with the cardiologist on the phone again, which is weird that a cardiologist never has to listen to your heart. But anyway, everything’s been on the phone.”

 

Integration of Care Across Teams and Levels of Care

Some women described gaps between the care they received in the community, versus acute care offered by the hospital. Some women were not followed up or seen regularly by their cardiologists or heart function clinics (perhaps complicated by COVID) and consequently experienced decreased heart function.

Anne1’s ejection fraction dropped by 10% over the years she was not monitored, however, she remained positive about her ICU and clinic care, calling it ‘spectacular’. She felt that once you are ‘on their books’, you have access to expert care.  

Other women spoke positively about remote monitoring of heart function, allowing them freedom to travel but also quicker, more responsive access to care when needed.

Trips to the emergency department is often part of the heart failure experience. From participant descriptions, it was not well integrated into their overall care process. Despite having long and complex health histories, emergency physicians often investigated and treated women without consulting their treating heart expert or listening to the patient.

 

Individual Healthcare Providers Can Make a Difference

Patients talked frequently about the huge positive difference that healthcare providers can make in their heart failure journeys. They appreciated nurses and doctors who understood how difficult it was to spend long periods of time in hospital and helped women to wash their hair or go out to a movie or have a night out with their husbands, for instance. Many women singled out the care they received in hospitals, either on cardiac floors or in ICUs as “wonderful”. Susan2 described her hospital nursing care team as “a real family”. Cathy appreciates her team, saying “You guys are angels. You are. Thank you for doing this. Thanks for your compassion. I can’t give you more advice than what you guys are already doing for me. Which is you guys, I have an amazing team.”

Physicians who were considered responsive by women we spoke with, listened to what women told them and treated them respectfully, making women feel more confident in their doctor’s care.

Women spoke negatively about the lack of available mental health supports or counselling offered by healthcare providers and programs, leaving them on their own to cope with devastating life changes.

Women that we spoke to with heart failure, underwent many tests and procedures that caused them physical pain. It seemed apparent that despite variation in how different people experience pain, that more attention could be focused on better pain management and sedation for this group.

Debbie tells a story about having her lung punctured during a pacemaker ‘upgrade’, done in a cardiac catheterization lab, without access to adequate sedation or pain control.

 

Patient Voice/Role on Team

When women spoke about their role on the team, there was a range of preferences. Some prefer to follow the physician as expert. Others like Jennifer want a voice on the team, saying “Who knows heart failure better than somebody who’s actually live with it?” Women commented that being knowledgeable about their condition and symptoms allows them to have more respected voices on their own team.