Nursing has long been a champion of ensuring that the health care system prioritizes care rather than simply cure. And it has been a persistent critic of the impact of an overly narrow biomedical perspective on matters of human health experience.Important inroads have been made, and patient centred care is now a hallmark mandate for most health service facilities.
More recently, nursing has started to push for system transformation in its perspective of how to deal with chronic conditions. The concept of chronic disease management was first popularized by Dr. Ed Wagner and others in the late 1990s. It was then widely integrated into both specialty and primary care medical practices, again focusing attention on diseases rather than on people. Although nurses have found constructive ways to support patients within a chronic disease management framework, they also recognize that it has serious limits – particularly in later life when managing the disease itself may be less important to the patient and family than finding a way to achieve the best quality of life for the time remaining.
In recent years, BC nurses have started to advocate for the idea of a palliative approach to care as an alternative approach for those with chronic conditions. From a nursing perspective, this approach takes up some of the lessons we have learned over the years in a conventional palliative care context and applies them to a much broader context of health and illness across the full spectrum of health care settings.
We know from OECD data that the oldest segment of the population is expected to grow the fastest and therefore that increasing numbers of people will be living with advancing, chronic and life-limiting conditions and often with multiple, interacting medical and social problems. Statistics Canada projections show that seniors (over 65 years) could account for more than 24% of the Canadian population by 2036, with the fastest growing age group being people 90 years and over. At some point in this advancing illness trajectory, people die, and we know that about 80% of these deaths are attributable to end stage chronic diseases such as cardiovascular, lung, and kidney disease, cancer, and dementias. Of these, only cancer has conventionally acted in a pattern consistent with our sense of who deserves palliative care; many of those who die of other chronic conditions are never deemed eligible. And since palliative care the way we know it today remains a “specialty” service, the vast majority of Canadians with these conditions die in what has been called “the indistinct zone of chronic illness that has no specific care delivery system.” In other words, their deaths take place in acute care hospital beds (where they are cared for by people who specialize in curative services), in long term care (which may lack many of the resources to support end of life processes), and at home, where families struggle to provide care, often with inadequate support. Nurses who do not see themselves as palliative care practitioners and have no specialty skills in that regard are witnesses to these relatively unsupported endings. And they know that there must be a better way.
A palliative approach to the care recognizes that specialist palliative care services, while essential for those with complex palliative needs, cannot meet current and future demand for the increasing numbers of people with chronic and progressive conditions. A palliative approach to care pushes us to rethink our priorities. A palliative approach requires an “upstream” orientation to care delivery that addresses the needs of the patient and family related to the advancing nature of the life-limiting condition. When we think about the problem this way, we can then adapt knowledge and expertise from the specialized palliative care context and embed it in our wider system of care delivery and care processes rather than developing a new system of care or trying to continuously add on to our existing specialty palliative care services. We can ensure that the nurses and other members of the interprofessional team who encounter those with chronic and life-limiting conditions have the knowledge and skills – and the authority – to plan care in such a manner that it acknowledges the reality of progressive decline and makes space for prioritizing the patient and families goals of care and perspective on quality of life.
In BC, nurses have led a broad-based interdisciplinary and intersectoral partnership to try to work out how to steer our care system toward a more palliative approach to care. Health planners and policy makers fully recognize the evolving demand on the system and the mismatch between our prioritizing investment in a high acuity system when the greatest need is being felt in the later stages of life’s trajectory. The vision of how to move forward, as articulated in Dying to Care: How can we provide sustainable quality care to persons living with advanced life limiting illness in British Columbia, which was the final report of the iPANEL project [Initiatives for a Palliative Approach in Nursing: Evidence & Leadership] Advisory Board] in 2014, included the following:
- Implementing an integrated palliative approach to care across the health service continuum.
- Extending and expanding chronic disease management and primary care strategies to include an integrated palliative approach to care.
- Appling a population focus in community, acute care and residential care settings in order to support persons through transitions in care.
Since that report was published, the Canadian end-of-life landscape has changed once again with the advent of legislation to permit medical assistance in dying in 2016. This development has accelerated the need to ensure that Canadians with and without chronic conditions engage in conversations with respect to their values and preferences, and their goals of care. And as we collectively seek to ensure that no Canadian feels forced to accept medical assistance in dying because of inadequate palliative care, the stakes are increasingly high for us to get this equation right.
This is a key time for nursing leadership in strategizing system transformation toward being able to support the high demand for compassionate, skillful, and knowledgeable support throughout the process of living and dying with a chronic condition. Nurses have conceptualized and operationalized this approach to care. The evidence for its effectiveness has been clearly demonstrated by BC-based nurse-led research teams. It is time for nursing to stand up and challenge our government and health system decision makers to take this seriously. Integration of a palliative approach into home, residential and acute care settings is an efficient, safe and humane way to serve patients with chronic conditions and their family members and to fill a costly unmet need for the British Columbian population.
For further reading:
Stajduhar, K. I. (2011). Chronic illness, palliative care, and the problematic nature of dying. Canadian Journal of Nursing Research, 43(3), 7-15.
Sawatzky, R., Porterfield, P., Roberts, D., Lee, J., Liang, L., Reimer-Kirkham, S., Pesut, B., Schalkwyk, T., Stajduhar, K., Tayler, C., Baumbusch, J., & Thorne, S. (2016). Embedding a palliative approach in nursing care delivery: An integrated knowledge synthesis. Advances in Nursing Science, 40(3), 261-277.
Reimer-Kirkham, S., Sawatzky, R., Roberts, D., Cochrane, M., & Stajduhar, K. (2016). ‘Close to’ a palliative approach: Nurses’ and care aides’ descriptions of caring for people with advancing chronic life-limiting conditions. Journal of Clinical Nursing, 25(15-16), 2189-2199.
Reimer-Kirkham, S., Doane, G.H., Antifeau, E., Pesut, B., Porterfield, P., Roberts, D., Stajduhar, K., & Wikjord, N. (2015). Translational scholarship and a palliative approach: Enlisting the knowledge-as-action framework. Advances in Nursing Science, 38(3), 187-202.
Thorne, S., Roberts, D., & Sawatzky, R. (2016). Unravelling the tensions between chronic disease management and end-of-life planning. Research & Theory for Nursing Practice, 30(2), 91-103
About Kelli Stajduhar
Dr. Kelli Stajduhar, RN, PhD, FCAHS is a professor in the School of Nursing and Institute on Aging and Lifelong Health at the University of Victoria. She has worked in oncology, palliative care, and gerontology for over 25 years as a practicing nurse, educator, and researcher. Her clinical work and research has focused on health service needs for those at the end-of-life and their families and on the needs of marginalized and vulnerable populations. She has been the academic lead investigator on a number of high level projects, including the iPANEL initiative to integrate a palliative approach into the health care system, an international collaborative on family caregiving and a Victoria-based study on access to end-of-life care for structurally vulnerable populations.