Palliative care involves dynamic relationships among clients, their families, and professionals, all with unique perceptions and approaches to the sociocultural construction of end-of-life care. In the home care context, this subculture may be particularly complex, because clients relate more readily as people than as patients, and professionals are not always prepared for this reality. This article presents ethnographic investigation of the culture of home-based palliative care as experienced by people older than 65 years who are dying of cancer. Through field visits to four client participants over 6 to 10 months, researchers conducted 16 interviews 1 to 2 hours long and participatory observation. Findings portray seniors' dynamic, constantly changing journey of "living while dying/dying while living." At one and the same time, seniors seized the opportunities and interpersonal relationships of "living while dying" and confronted the challenge of "dying while living" through the following: "celebrating life/grieving losses," "connecting with/detaching from others," "resigning to/accepting life circumstances," and "holding on to/moving beyond life in the present moment." The insights gained may inform nurses' provision of psychosocial end-of-life care but suggest that more education, time, and informed collegial and employer support would help to optimize their potential for this challenging role.
Author Affiliations: Carol L. McWilliam, EdD, is Professor, Faculty of Health Sciences, School of Nursing, H.S.A., University of Western Ontario, London, Ontario, Canada.
Catherine Ward-Griffin, PhD, is Associate Professor, Faculty of Health Sciences, School of Nursing, University of Western Ontario, London, Ontario, Canada.
Abram Oudshoorn, RN, BScN, is Doctoral Student, Faculty of Health Sciences, School of Nursing, University of Western Ontario, London, Ontario, Canada.
Elizabeth Krestick, RN, MScN, is Case Manager, Waterloo Wellington Community Care Access Centre, Kitchener, Ontario, Canada.
This research was funded by the Canadian Institutes of Health Research (CIHR).
The findings and conclusions contained in this article are those of the authors. No official endorsement by CIHR is intended, nor should it be inferred.
This study was undertaken within the public home care context of London, Ontario, Canada.
Address correspondence to Carol L. McWilliam, EdD, Faculty of Health Sciences, School of Nursing, University of Western Ontario, London, ON, Canada N6A 5C1 (firstname.lastname@example.org).