The lived experiences of individuals who provide palliative care, and those who receive it, can fill gaps in research knowledge. This photo submitted by Dr. Ajila Ajithkumar is of her conversation with cancer patient Santosh Bhiku about his fears: body image, dignity, and acceptance. It left him feeling "lighter and freer." Photo used with permission.

Embracing New Ways of Knowing & Understanding Palliative Care

By IAHPC Board Member Natalie Greaves, University of the West Indies—Barbados; Afsan Bhadelia, Purdue University; Pablita Thomas, British Columbia Hospice Palliative Care Association; and Sandra Fox, Vancouver Coastal Health Research Institute

For hundreds of years, the dominant way of knowing in medical disciplines revolved around the concept of “absolute truth” arrived at by measuring discreet, tangible, and often only numerically quantifiable elements of nature. Yet in the past 40 years, medical sciences and its associated allied health specialties have been embracing the concept of relative truth.  Relative truth frees researchers to accept the non-quantifiable, non-numerical, lived experiences of people as real and valid forms of knowledge.^(1,2,3) 

Though liberating, this acceptance has been fraught with tension, creating a tug of war between quantitative and qualitative ways of knowing. The scientific literature poses questions such as these:

• “What is the fundamental nature of reality?”
• “How can a researcher gather and interpret the lived experience of another in an objective or minimally subjective way?”
• “What is the usefulness of non-quantitative work if it can’t be generalized to an entire population?”

Inappropriate answers can stymie the conduct of research and the development of new research tools.^(1,2,3) It is with the full knowledge of this debate and the need to challenge current methodological assumptions that an international group of lived experiences researchers sought to unravel ways of knowing, pushing participants at the 2025 Canadian Hospice and Palliative Care Association Conference, held in October, to explore new horizons in their palliative care research.

The panel, “Reframing Value: Integrating Lived Experience, Indigenous Epistemologies, and Global Evidence in Palliative Care, EOL, and Grief Research,” was expertly moderated by Pablita Thomas, chief executive officer of the British Columbia Hospice and Palliative Care Association. It included presentations by three authors of this article: Dr. Afsan Bhadelia, Dr. Natalie Greaves, and Sandra Fox.

Advice for researchers

Sandra Fox. Photo used with permission.

Sandra Fox and her colleague shared the importance of understanding the wide tapestry that exists in framing and understanding the world, challenging researchers to review and deconstruct framings of reality that are overly limiting. They noted that because the concept of "relationship" is essential to the life of Indigenous communities in Canada, palliative care needs are impossible to understand until their important relationships, such as those with family, friends, and the natural world, are explored. 

Further, the pair of presenters provided a compelling contrast between Western science's ways of knowing and the value principles that guide Indigenous knowledge creation. They noted that Indigenous methods tend to be non-individualistic, and oriented toward community growth and well-being, whereas Western science may be viewed as predominantly individualistic, with methods of knowledge sharing that encourage competition and prioritize generating income over community good.

Afsan Bhadelia. Photo used with permission.

Value vs. volume

Dr. Bhadelia's presentation highlighted the importance of shifting from volume-based health systems strengthening approaches toward inclusion of values held and prioritized by individuals, communities, and society. Absent this shift, palliative and end-of-life care research will continue to neglect these important values. She noted the critical need for research that gives voice and power to the people who systems seek to serve, as that form of research is a prerequisite for epistemic justice and accountability in healthcare. 

In this regard, metrics to assess complex phenomena such as suffering can guide our understanding of what matters most, especially to communities that have previously been excluded in priority-setting processes. Her expertise obtained from conducting global research, particularly capturing the lived experiences of patients and caregivers in India, South and Central America, and the Caribbean confirmed the value of authentic listening: listening that incorporates the inner desires of a health care user. Authentic listening also demands prioritizing healthcare needs over profit and its resulting health system "efficiencies" that can impede progress in palliative care provision. Indeed, authentic listening is fundamental to fostering solidarity between carers and the cared, and beyond.

Lived experience fills gaps

Natalie Greaves. Photo used with permission.

Dr. Greaves spoke of conducting lived experience research to systematically investigate gaps in the development of palliative care services in the small island of Barbados. She urged attendees to use both qualitative- and qualitative-informed methodologies to gain the rich sociocultural information needed to inform the design and delivery of community and hospital palliative care services. She acknowledged that while qualitative-based projects are arguably more labor intensive and potentially more emotionally demanding on the researcher, they are best suited to capturing complex and stigmatizing narratives from the marginalized in societies, e.g., ethnic minorities. 

She emphasized that the way forward for researchers involves blurring philosophical paradigms and methods, and the benefits of using these flexibly and pragmatically, including the use of new AI and computer-assisted qualitative data analysis software (CAQDAS). CAQDAS can help manage and expedite research processes. Finally, she challenged researchers to embrace the underlying principles of love, sympathy (and empathy), and hope as they conduct research to improve the lives of others.

All agree: change is needed

Fundamentally, all of the panelists echoed a need to expand our understanding of the processes for gathering and documenting the impact of healthcare research on everyone involved, including participants, policymakers, and other researchers. The panelists shared resources that attendees could use to further explore the concepts discussed during the session. In this vein, the resources and references below are shared with the hope of inspiring readers of this account in their own research journey.

Resources

BC Hospice Palliative Care Association

Indigenous Health Research Unit, Vancouver Coastal Heath Research Institute

Bhadelia A, Greaves N, Doubova SV, Knaul FM. Development of the SAVE study protocol to use lived experience to assess the value of serious health-related suffering and palliative care. Commun Med 2025; 5: Article 455.

References

1. Lincoln YS, Guba EG. Paradigmatic controversies, contradictions, and emerging confluences in: NK Denzin, YS Lincoln (eds). The Landscape of qualitative research: Theories and issues. Thousand Oaks (CA). Sage 2023: 253-254, 267, 272.

2. Pope C, Mays N. Qualitative Research: Reaching the parts other methods cannot reach: an introduction to qualitative methods in health and health services research. Br Med J 1995; 311: 42-45. 

3. Greaves N. Adult Palliative Day-Care Services: An investigation of the factors influencing access to services using the case of a cancer network in the United Kingdom. University of Warwick, 2012.

Afsan Bhadelia, PhD, is an assistant professor in the Department of Public Health in the College of Health and Human Sciences at Purdue University in Indiana, USA. Her mixed methods research assesses how health systems, in their complexity and with their constraints, are performing with the ultimate aim of finding ways that people can meaningfully shape how healthcare priorities are identified and implemented. She co-chaired the Scientific Advisory Committee of the Lancet Commission on Global Access to Pain Control and Palliative Care, and co-edited the book Closing the Cancer Divide.

Sandra Fox leads the Indigenous Health Research Unit at Vancouver Coastal Health Research Institute, British Columbia, Canada. Her experience includes Indigenous Community Liaison officer and Aboriginal Student Advisor for the University of British Columbia, Canada.

Natalie Greaves, MBBS, PhD, is a tenured lecturer in public health and coordinator of the MPhil/ PhD Program in Public Health and Epidemiology at The University of the West Indies, Cave Hill Campus, Barbados. She merges her clinical passion for community-based palliative care with academic applied public health, providing expertise in using qualitative methods to explore complex issues.

Pablita Thomas is executive director of the British Columbia Hospice Palliative Care Association, Canada. Her experience includes being a policy analyst with the Ontario Ministry of Long-Term Care, interim CEO of the Alberta Association of Midwives, and executive development director of Granting Services Consultants, which aids start-ups and established businesses especially those in the fields of health, social welfare, and environmental/tech.