Experiences with the health care system: Interviews with Caregivers about Palliative Care in Canada

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People generally prefer to receive palliative care (PC) in their homes. However, Canada lacks a consistent way of collecting information about the quality of care in the community. Dr. Dawn Guthrie, from Wilfrid Laurier University, is leading a team of researchers and knowledge users to develop and test a set of quality indicators for community-based PC. This project is a three-year study funded by the Canadian Institutes of Health Research.  

As part of this large project, they conducted interviews and asked participants to openly express their experiences with PC so that the team could understand what good quality meant to them. They interviewed nine caregivers, one patient, and 11 decision makers from Yukon Territory, British Columbia, Alberta, Ontario, and Nova Scotia. In this brief article, they focus on the main topics that were discussed by the caregivers.  

All interviews are recorded and then transcribed word-for-word to capture everything that was said by the caregivers. Participants’ names are changed to protect their privacy. The team carefully analyzed the data to understand the main discussed, and the main topics are now grouped into “themes” which summarize the key points or ideas that are raised. Each theme is given a label to define what was being discussed by caregivers.  

The first key theme is called “The Caregiver as Anchor” and captures the idea that caregivers are essential for ensuring patients receive the necessary services from the health care system. Without the caregiver as an anchor, the patient might not receive the supports necessary to maintain their quality of life. Sam describes his role this way: 

As much as he [Carl, Sam’s husband] was having less of an anchor of life, the caregiver really sort of then becomes the only anchor. – Sam 

The second theme is called “Bewildering System.” Caregivers describe the health care system as complicated and failing to meet their expectations and needs, unless they are able to access someone who could advocate on their behalf.  Caregivers (and patients) expect a certain things from the system however, not all of these expectations are realized. Alice, a caregiver expresses it this way:  

I do think that it’s really important sitting down at the beginning and just talking about what they can do, what my expectations were, […] is it realistic? If not, what can we do, what’s out there, what’s available, you know? – Alice 

Caregivers feel that the palliative care coordinator is their best resource for information about where and how to access supportive resources. Adele and her husband Will express gratitude toward their PC coordinator: 

And I’ll be honest with you; [our palliative care coordinator] has been a tremendous advocate for me. She really has. – Adele 

 Among the resources caregivers and patients need to access are home health aides. When this support is provided, caregivers often feel some of their burden is lifted and a bit of their freedom is restored. For example, Norma describes a home care aide who supported her husband Henry: 

And oh, the care aide. What really helped our life a lot too, was in the last two years we got a care aide and the same care aide to come every time. And he was like an angel! He got to know Henry really well. Henry trusted him. Henry didn’t mind me leaving when he was with him. – Norma 

 The third theme that emerged from the research is called “Patient, Caregiver, and Family Centered Care.” Caregivers express a desire for the care to be tailored to the patient and their family’s needs and wishes. According to Theo, respecting a patient’s wishes is imperative:  

… the only thing I would compare it to birth. When you’re giving birth, you’re in control. You call the shots. And I think it’s your death, you call the shots. – Theo

By hearing the experiences of these caregivers, the team has learned a great deal about what they value. It is clear that continual and timely communication between caregivers and the health care system about wishes, goals, and care needs is essential to ensuring that the caregiver feels supported in their caregiving role. All of this important information will help as Dr. Dawn Guthrie and the leading a team of researchers and knowledge users develop key indicators to assess the quality of PC in the community. 

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