Perceptions of Caregivers Offer Insights into How to Improve End-of-life Care

Categories: Care, Education, Featured, Highlight, People & Places, and Research.

Caregivers are simply anyone who is personally caring for a family member or close friend with a serious health problem. They represent a key resource in the Canadian healthcare system that is often overlooked by the other players in the system. Their views and opinions on end-of-life care are particularly pertinent as they combine hands on experience providing care and support with an emotional bond to the person under their care or ‘patient’, for lack of a better word, whether it be a husband or wife, son or daughter, aunt or uncle or dear friend. What they think is important; what they feel equally so. This deep emotional connection is one of the elements that separate caregivers from professionals and system administrators.

The Health Care in Canada (HCIC) Survey has surveyed healthcare providers, managers and the adult public, including caregivers and non-caregivers nationally for the past 25 years. The conducted surveys aim to understand their perceptions of the system and indicate aspects that are working and those that need further action.

The survey is fodder for peer-reviewed papers, among them, “Canada’s Evolving Medicate: End of Life Care” in the Journal of Palliative Care (2020)1 , “Public and Professional Insights on End-of-Life Care: Results of the 2016 Health Care in Canada Survey” (Healthcare Quarterly, 2017)2 and “Contributions and Challenges of Non-Professional Patient Care: A Key Component of Contemporary Canadian Healthcare” in Healthcare Quarterly, 20153.

Results of the 2018 HCIC Survey revealed some differences and similarities between caregivers and their healthcare system counterparts. For example, when asked to indicate their levels of support for various options* to enhance end-of-life care, caregivers showed a significantly higher level of support above non-caregivers for enhanced hospice and palliative care (Figure 1). We intuit here that caregivers perceive a gap in care that others tend to overlook.

Figure 1. Responses when asked in the 2018 HCIC Survey: “Please consider each of the following options for end-of-life health care. Please indicate to what extent would you oppose or support each option using a scale from one to 10, where one means you would strongly oppose it and 10 means you strongly support it.” Strongly support = 9-10. Caregivers, n=275; Non-caregivers, n=1225.

Interestingly, while enhanced medically assisted death was the least strongly supported care option for both caregivers and non-caregivers (Figure 1), when asked to prioritize these same options going forward, both groups chose enhanced medically assisted death as their top priority for end-of-life care (32%, Figure 2). Between group differences were not significant with respect to priorities.

Figure 2. Responses when asked in the 2018 HCIC Survey: “In your personal opinion, which one of the following should be the top priority for end-of-life care in Canada going forward?” Caregivers, n=275; Non-caregivers, n=1225.

In summary, 3 in 4 caregivers in the 2018 HCIC survey strongly supported enhanced hospice palliative care as a way to enhance end-of-life healthcare, while one-third suggested enhanced medically assisted death may be a top priority going forward. Given the contributions caregivers make to the Canadian healthcare system, understanding and acting upon their perceptions and needs will ultimately lead to improved end-of-life care.

HCIC survey results and papers can be accessed on the Health Care in Canada Survey website at:

Authors: John Aylen, Joanna Nemis-White on behalf of the HCIC Knowledge Translation Committee

John Aylen, MA, is President, John Aylen Communications, Montréal, QC.  He is a member of the HCIC Knowledge Translation Committee.

Joanna Nemis-White, BSc, PMP, is Principal, Strive Health Management Consulting Inc., Halifax, NS.  She provides consultant support on behalf of Merck Canada to the HCIC survey initiative.


  1. MacPherson N, Montague T, Aylen J, Martin L, Gogovor A, Baxter S, Nemis-White J. 2020. Canada’s Evolving Medicare: End-of-Life Care.Journal of Palliative Care.
  2. Montague T, Nemis-White J, Aylen J, Ahmed S, Baxter S, Martin L, et al. Public and Professional Insights on End-of-Life Care: Results of the 2016 Health Care in Canada Survey. Healthcare Quarterly. 2017;20(2):18-22. doi:10.12927/hcq.2017.25222
  3. Montague T, Gogovor A, Ahmed S, Torr E, Aylen J, Marshall L, et al. Contributions and Challenges of Non-Professional Patient Care: A Key Component of Contemporary Canadian Healthcare.Healthcare Quarterly. 2015;18(3):18-22.doi:10.12927/hcq.2015.24436

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