Mary Lou Kelley1, Holly Prince2, Jin Ye Yeo3
1Professor Emeritus, School of Social Work, Lakehead University, Ottawa, Canada; 2Centre for Education and Research on Aging & Health, Lakehead University, Ontario, Canada; 3APM Editorial Office, AME Publishing Company
Correspondence to: Jin Ye Yeo. APM Editorial Office, AME Publishing Company. Email: apm@amepc.org
This interview can be cited as: Kelley ML, Prince H, Yeo JY. Readers’ Choice: Author Interview with Dr. Mary Lou Kelley and Dr. Holly Prince. Ann Palliat Med. 2025. Available from: https://apm.amegroups.org/post/view/readers-rsquo-choice-author-interview-with-dr-mary-lou-kelley-and-dr-holly-prince.
Expert introduction
Dr. Mary Lou Kelley (Figure 1) has been engaged in practice, teaching, and research in gerontology and palliative care since 1972. Her research used participatory action and community capacity development approaches to empower and support community members and front-line workers and create changes that improved end of life for people, their families, and communities. Major research contributions were in rural and First Nations communities and long-term care homes. Mary Lou was the recipient of the Canadian Hospice Palliative Care Association's 2011 Award of Excellence, the Queen’s Diamond Jubilee medal in 2012, and the Ontario Hospice Palliative Care Visionary Award 2015, in recognition of her contribution to Canadian palliative care practice, education, and research. After 35 years as a professor at Lakehead University, Thunder Bay, she retired in 2015. She and her husband relocated to Ottawa, where Mary Lou is an active volunteer with Compassionate Ottawa. Her current professional activities include being a co-investigator on a Health Canada-funded project to support long-term care homes nationally to implement the palliative approach to care.
Dr. Holly Prince (Figure 2) is an Anishinaabekwe and a member of Opwaaganisiniing in Northwestern Ontario, Canada. She has a Master’s in Social Work and a Ph.D. in Educational Studies. Holly’s research focuses on decolonial and Indigenist education, Indigenous health equity, the resurgence and re-activation of Indigenous Knowledge, and community-based research. She leads the Indigenous People's Health & Aging Division at the Centre for Education and Research on Aging & Health, Lakehead University. She has devoted the last 20 years to advancing the right of Indigenous peoples' access to culturally appropriate and equitable palliative care and has mobilized her efforts as a national champion of human rights and dignity for people preparing to journey back to the spirit world.
Their article, “Developing palliative care programs in Indigenous communities using participatory action research: a Canadian application of the public health approach to palliative care”, published in our journal, has received an outstanding readership and entered the journal’s Most Read Article List.
Figure 1 Dr. Mary Lou Kelley
Figure 2 Dr. Holly Prince
Interview
APM: Dr. Kelley, Dr. Prince, your careers have both been marked by a deep commitment to public health and Indigenous health. What first inspired each of you to pursue work in these areas?
Dr. Kelley: I grew up in Thunder Bay, northwestern Ontario, which was where I eventually met Holly. It is a large region (527,417 km2) with a significant population of Indigenous people (over 26%), many of whom live in rural and remote First Nation communities. My father was a family doctor, and my mother was a pharmacist. Healthcare was part of my family culture, and living amongst Indigenous people was normal for me. I began my career (1972) as a hospital social worker in Thunder Bay, mostly serving older adults and Indigenous people. I quickly became familiar with the challenges that Indigenous people face in accessing healthcare, including geographical, cultural, and language barriers. In 1980, I went on to teach Social Work and Gerontology at Lakehead University. From a life cycle perspective, aging naturally evolves into dying. Hence, my teaching and research evolved via a natural progression from aging to caregiving, dying, and living with grief and loss. Medically, the field of palliative care was still new in Canada, and most healthcare providers had little training. At Lakehead University (1992), we developed and offered a palliative care continuing education program for regional healthcare providers. This program continues to educate physicians, nurses, allied healthcare professionals, and hospice volunteers today. I remained very aware of the special concerns of Indigenous people accessing health services in general, and especially end-of-life care. I had many wonderful Indigenous students at Lakehead University. The most significant one for me was Holly. Holly walked into my office in 2003 as a graduate student in the School of Social Work. She told me that she wanted to study the experiences of Indigenous people at the end of life and with palliative care. I knew there was a great need and readiness for this work. And so, Holly and my journey began.
Dr. Prince: My experience is different, but the endpoint is the same. I was raised in a small, rural community in my traditional territory surrounding Animbiigoo Zaagi'igan (Lake Nipigon). I was the only person in my family at the time to pursue post-secondary education. I was unsure of what I was doing and whether I could complete my education, but I met many people along the journey who supported and guided me to continue with my education. Compared to Mary Lou, I was relatively new to academia and the healthcare system. In 2002, the year before I started my master’s, a friend of mine was diagnosed with cancer. Throughout the time that I was journeying with him through the healthcare system, nobody prepared me for what was happening. The words ‘death,’ ‘dying,’ ‘end-of-life,’ ‘palliative care,’ and ‘terminal’ were never mentioned. What I saw throughout the journey was cure: I saw chemotherapy, radiation, and traditional medicine being performed. The last time I saw him, he was sitting up on the hospital bed, and I was positive that he would return home soon. Two days later, he passed away. That was a challenging period of my life. I had many previous experiences caring for people who were sick and had witnessed the deaths of my family members. However, these experiences were different as they were with older people, and they did not involve sustained duration in the hospital with intimate contact with healthcare providers. The experience opened my eyes to the extreme gaps and barriers to culturally relevant healthcare for Indigenous people. It challenged my views and beliefs and my overall direction in life. It catalyzed me to shift my focus from addictions and mental health to navigating and researching the Westernized healthcare system to improve care for Indigenous people, particularly for those at the end of life, and focus on research and policy to address the systemic issues that harm Indigenous people.
APM: Given your extensive work in palliative care, how have you seen the field evolve over the years, especially in relation to Indigenous communities?
Dr. Prince: When I first entered the field, palliative care for Indigenous people was not on anyone's radar. After more than 20 years of working in this area, I am finally beginning to see health policies and shifts in funding opportunities for palliative care for Indigenous people. The barriers to healthcare will persist unless the colonial systems of care are dismantled and rebuilt by Indigenous peoples, grounded in Indigenous ways of knowing, being, and doing. Nevertheless, Indigenous people demonstrate remarkable adaptability and resiliency. While they engage in a movement to reclaim their Knowledges, they are also exploring ways within the Eurocentric Westernized system to find better care.
What is also notable is the increasing number of Indigenous people entering academia and the healthcare sector, myself included, with the aim of supporting our communities and nations. By embedding ourselves within these colonial systems of education and care, we can help mobilize our knowledge.
Dr. Kelley: When palliative care was introduced to Canada in the early 1970s, it was hospital-based and not widely accessible, especially for those in rural and Indigenous communities. I also recognized the disconnect between the medical model of palliative care and the cultural and community-based approaches to end-of-life in Indigenous communities. Palliative care, as a construct, was created in England for their culture and medical system. We had a very different context. What Holly and I aimed to do was to help create a different approach to palliative care that would be embedded in Indigenous people’s context, culture, and traditions—an approach that would reflect the end-of-life care Indigenous people need and want. This is why we took a participatory research approach. Over six years, Indigenous communities created their own palliative care programs, and our research project provided support and resources.
Since 2003, one difference I have observed is that many more Indigenous communities are mobilizing around developing palliative care and creating and implementing programs based on their vision for culturally appropriate care. One Indigenous community that Holly and I worked with 15 years ago has now designed and been approved to build a local hospice that will be grounded in their culture and traditions. Therefore, I see progress through the creation of new Indigenous models of palliative care, which were previously not evident. We all can learn from these new models.
APM: Indigenous communities often face unique barriers when it comes to healthcare access. What are some of the major challenges in providing palliative care to these communities, and how does your work seek to address them?
Dr. Prince: One of the things my work focuses on is recognizing that Indigenous people are dying from illnesses from which they would benefit from care. However, the care models that are currently embedded in the Canadian healthcare system are based on Eurocentric Westernized norms and settler colonial knowledge systems. These programs are not designed based on Indigenous ways of knowing, being, and doing, which creates barriers to culturally safe and equitable care.
One of the major challenges faced by Indigenous peoples in accessing equitable healthcare stems from the jurisdictional ambiguity and the lack of ownership and accountability between federal and provincial/territorial governments regarding the responsibility of providing healthcare to Indigenous peoples. For most Canadians, healthcare is primarily a provincial responsibility. However, Indigenous peoples living in Indigenous communities receive their healthcare funding and programs directly from the federal government. This creates a jurisdictional grey area where there are two distinct approaches to healthcare, which poses challenges to providing equitable and culturally safer palliative care. This results in a lack of coordination and integration of the two systems of care, which creates huge challenges in hospital discharge planning and the transition of clients between the two healthcare systems.
Additionally, as programs are not funded equitably, there is a lack of programs and services, staff, and resources. As a result, Indigenous people have to leave the community to receive healthcare and are engaged with the Eurocentric Westernized system, and they experience racism, which is a huge issue. My work aims to create safer care and spaces for Indigenous people to access.
APM: The article “Developing palliative care programs in Indigenous communities using participatory action research: a Canadian application of the public health approach to palliative care” has received significant attention. What key issue did you hope to address with this paper, and what impact did this article have?
Dr. Kelley: We wrote many papers during the 6 years of participatory action research (2010-2016). Holly and I had a project vision, which was to support four Indigenous communities to create unique community-based palliative care programs that met their needs. The article was an overview of our process and outcomes over six years, with four very different communities. Our research approach was described in detail in the article, and we conceptualized a community capacity development model that focused on the sequential phases of program development. The model is important to guide and promote future replication of our approach. Having a practical benefit for other Indigenous communities was our ultimate goal.
What I think we achieved in our work with the four communities is that we demonstrated, given resources and support, that Indigenous communities were able to successfully create palliative care programs to meet the needs of the local people. They were able to activate their community strengths, traditions, and cultural knowledge to accomplish this. The communities also advocated and developed new relationships with provincial and federal healthcare systems mandated to provide their health services, succeeding in having them adapt to support a new type of palliative care program. Each of these communities created a program that was unique to them. The article was also important because it demonstrated my approach as a non-Indigenous researcher. I was not the expert! Entering a culture that was not mine required a sense of cultural humility, respect, and trust in the Indigenous communities. Holly was the bridge between me, the university, and the communities.
Dr. Prince: Additionally, I believe the article was successful because our research findings demonstrated how research can contribute to both practice and policy. We outlined ways to develop and implement programs that could serve as valuable learning opportunities for other communities interested in similar initiatives. At the time, there were no existing projects in Canada that focused on a community-based approach like ours. We also produced numerous policy recommendations, which are detailed in the article, aimed at improving policy and funding opportunities. These recommendations played a crucial role in transforming the national landscape in Canada. We made many of the resources we developed available on our website, allowing other communities to adapt and use them free of charge. In total, we provided about 90 administrative, educational, and clinical resources and tools for others to utilize.
APM: What was the process like working together on this article? How did your respective expertise in palliative care and Indigenous health contribute to the final piece, and were there any unexpected challenges or learnings you encountered while writing this article?
Dr. Kelley: I have worked with Holly for so many years that we had a style and a system. I would write in the morning, and Holly would write in the evening. We always believed that everything would take many drafts, and we did not get hung out on first authorship. We included the community members in writing and shared authorship amongst team members. The research team had a common goal to make the work as good as it possibly could be, and everyone helped to review each other’s work regardless of seniority and position.
What was challenging for me was conceptualizing how to approach this paper as an overview of both our methodology, our process, and project outcomes. Our process was the key to achieving the positive outcomes. The hardest part was wrapping my mind around how I could look at our work from a distance and decide what to include. There was so much to share.
Dr. Prince: For myself, as I was not only the co-investigator but also the manager between the research team and the communities, I had to bridge the different knowledge systems that communities and academia had to ensure that the voice of communities was heard while conforming to academic guidelines. I think we did a good job in ensuring that the research process was safe for Indigenous communities to participate in by getting the communities involved in the writing and then subsequently using our expertise working in Westernized academia to ensure that it was in the journal-accepted format. Every community was represented and is a co-author of our papers.
APM: Looking ahead, what are your hopes for the future of palliative care in Indigenous communities, and how do you envision your own work continuing to contribute to this evolution?
Dr. Prince: I have been working in Westernized academia since 2003, upon entering my Master’s, looking at ways to improve care for Indigenous people within the Westernized system of care. Since completing my PhD, I have changed the focus of my research to one that centers on decolonization and the resurgence of Indigenous Knowledges. My research now addresses how Indigenous Knowledges and caregiving practices can be re-activated and re-mobilized when caring for community members preparing to journey to the spirit world. Looking ahead, I aim to deepen my understanding and focus on developing community-relevant frameworks that promote equitable and positive outcomes for Indigenous people and to share these insights with other communities to benefit from them. In addition, by challenging settler-colonial systems of healthcare, I hope that my research can reduce the ongoing cultural and physical harms against Indigenous peoples.