Canadian population mortality data reveal a significantly reduced proportion of deaths occurring in hospitals after 1994. Hospital deaths peaked at 80.5% in 1994, after a longstanding hospitalization-of-death trend in Canada. A decline in hospital-based death and dying has also occurred in some other countries. As the place of death can have multiple significant direct and indirect impacts on dying individuals, their families, and health services utilization and costs, it is important to understand factors for an out-of-hospital shift. An integrative review of Canadian print literature from 1995 was undertaken to identify these factors, with three themes emerging: (1) changes in health care and health system reforms after 1994 reduced both the availability and desirability of hospital-based care, (2) sociodemographic developments including aging of the population, increased multiculturalism, and diversity in accepted end-of-life care practices shifted place preferences, and (3) advances in palliative and end-of-life care, including a palliative care expansion out of hospital, supported nonhospital death, and dying processes. The period following 1994 was thus a time of major transformation during which the place of death and dying underwent important changes that supported and promoted a transition from hospital-based end-of-life care.
The 1966
An integrative literature review was undertaken to understand why the out-of-hospital shift of death and thus also dying and end-stage end-of-life care occurred in Canada after 1994. This is an appropriate method for data collection because to rely only on purely numerical databases would not provide a definitive and comprehensive answer. An alternative strategy would be to interview health care or other experts but their opinions are unlikely to identify all factors initiating and continuing this shift out of hospital. A previous literature review was successful at identifying many diverse influences for the hospitalization of death and dying in Canada until 1994 [
Integrative and systematic literature reviews are designed to carefully search for print information on specific questions and then examine the collected body of information to determine what evidence exists and if information gaps are present. In contrast to Cochrane-style systematic reviews that focus on randomized control trials and experimental research reports and other systematic reviews which similarly employ an exhaustive search for research literature and then an exclusion of a substantial proportion of articles because of methodological quality and other issues, integrative reviews involve gathering a wider range of print information and retaining both peer-review and nonpeer-review articles because the focus of inquiry is on complex events and multifactorial processes [
Primary Canadian print information sources.
Canadian scholarly journals | Additional Canadian print sources |
---|---|
Canadian Bar Review | Canadian Information for Health Information (CIHI) |
Canadian Gerontological Collection | Federal Government |
Canadian Issues | Health Canada |
Canadian Journal of Administrative Sciences | Health Ministries/Departments in Canada |
Canadian Journal on Aging | Journal of Palliative Care |
Canadian Journal of Behavioural Science | McLean's Magazine |
Canadian Journal of Economics | Public Health Agency of Canada |
Canadian Journal of Experimental Psychology B | Statistics Canada |
Canadian Journal of Geriatrics | |
Canadian Journal of Infectious Diseases | |
Canadian Journal of Law and Society | |
Canadian Journal of Nursing Administration | |
Canadian Journal of Nursing Leadership | |
Canadian Journal of Nursing Research | |
Canadian Journal of Philosophy | |
Canadian Journal of Policy Research (ISUMA) | |
Canadian Journal of Political Science | |
Canadian Journal of Public Health | |
Canadian Journal of Sociology | |
Canadian Medical Association Journal | |
Canadian Nurse Journal | |
Canadian Psychology | |
Canadian Public Policy |
As the indexes were reviewed, articles were flagged that possibly indicated an event, development, or process that could have a direct or potential impact on the location of death, and/or on terminally ill or dying individuals, their families and/or other informal or formal caregivers, hospitals, and/or the health system as a whole. More specifically, any event, development, or process including social or societal, health care, health system, and palliative care that could potentially impact end-of-life care, dying and the location of death, or location of end-of-life care were sought. Flagged articles had their abstract read and then (if still deemed to be relevant) full-text articles were read to determine potential relevance. The authors of the retained articles (if a Canadian address for them was provided) and the references listed in the retained articles were also reviewed to identify additional articles that could more directly or clearly exemplify the identified factor or influence. During this search, influences or factors that would impact only a few people or only one region of Canada were not selected as the shift out of hospital was pan-Canadian.
Research ethics approval was not required for this project. A list of Canadian journals and other Canadian information sources was developed with the assistance of a University of Alberta librarian. This list was divided among team members and each team member reviewed the 1995 to 2012 indexes. Each reviewer summarized the findings of selected articles in a table, with the first author then reviewing each of these tables to note common or key findings within and across the tables. These findings were coded, categorized, and then thematically grouped in keeping with common qualitative data analysis techniques. The team as a whole then reviewed and agreed upon the grouped and labelled findings, and the first author drafted a report. The team subsequently reviewed, updated, and eventually approved the final report. This dual process of independent and then group assessment of findings and the analysis of findings augment the trustworthiness of this information development process.
Three themes among the findings emerged during this literature review: (1) changes in health care and health system reforms after 1994 reduced both the availability and desirability of hospital-based care, (2) sociodemographic developments including aging of the population, increased multiculturalism, and diversity in accepted end-of-life care practices shifted place preferences, and (3) advances in palliative and end-of-life care, including a palliative care expansion out of hospital, supported nonhospital death, and dying processes.
Health care advancements and health system changes after 1994 supported home-based end-of-life care and reduced the necessity of using hospitals for high quality and accessible end-of-life care.
Many new diagnostic tests such as MRI machines, medications, investigative and treatment technologies and surgical techniques became available and were adopted for widespread use after 1994 [
Health care research also proliferated after 1994 [
The evidence-based movement supported what had already become an established practice in Canada of withdrawing and withholding life supporting treatments when they were not appropriate for the patient [
Health care knowledge and technology advances that followed 1994 also permitted a rapid and substantial shift from inpatient hospital-based care to ambulatory or outpatient-based care [
Terminally ill and dying people were not exempt from this ambulatory health care services development, and with this new travelling burden potentially contributing to active or passive decisions to remain at home. From 1994 to 2000, for instance, a declining proportion of cancer deaths occurred in Canadian hospitals [
After 1994, health care developments, specialization, the centralization of health care services in larger urban communities, and the shift to ambulatory care rapidly and substantially changed where and how most health care services were provided. These changes, along with economic or fiscal pressures, necessitated health system reforms within Canada. Hospital outpatient clinics and day surgery departments expanded, so that most surgeries and diagnostic tests could be provided without an overnight or extended admission to an inpatient hospital bed [
Informal caregiver burden began to be researched extensively, in part because inpatient hospital beds and services were less available to provide rehabilitative, respite, subacute, palliative, and supportive care [
The increased prevalence of chronic or incurable illnesses compared to acute curable or treatable illnesses also became more clearly evident in the years after 1994 [
Three additional major developments after 1994 also had a substantial impact on the Canadian health system as a whole: (a) an economic recession in the 1990s which led to significant and sustained hospital downsizing despite population growth and aging, (b) nurse shortages, and (c) increased public concern over and criticism about the health system. The 1990s recession occurred at the same time that many new diagnostic tests, medications (some now advertized for the first time on television to raise consumer demand and thus utilization), and surgical and nonsurgical techniques were raising public expectations of health care services and the health system despite the cost-reduction measures that were being initiated by Canadian governments [
In response to these fiscal and other pressures, hospital downsizing was common across Canada; with some hospitals closed and most others sustaining a loss of inpatient beds in the mid to late 1990s [
Health care cost savings were usually achieved with hospital downsizing through nursing workforce reductions, and also reductions in hospital cleaning, maintenance, and supplies or services staff [
Wait lists and wait times also became a focus of considerable government attention, with the federal and provincial governments planning an
Public concern about the health system and health services quality began to appear after 1994, in part because of the nursing shortage but also because of the shift of registered nurse responsibilities to paraprofessional or nonprofessional workers, another cost-reduction measure [
The period following 1994 could therefore be described as a troubled historical phase for the Canadian health system. This was clearly a time of considerable system change in keeping with many health care and other developments that served in part to move health care out of inpatient hospital beds. System change was also a result of reduced public access to health care services, health care quality concerns, and other issues that became evident and were the focus of much public and other attention.
Many important socio-demographic developments after 1994 also occurred, and these developments helped to shift death and dying out of hospital. Chief among these developments was population aging, along with a large and growing proportion of the public who were now living with serious long term and usually progressive chronic illnesses [
Death began to be increasingly seen as an event that occurs as expected or as anticipated in advanced old age or an advanced incurable illness state [
Population aging also meant that death usually occurred after age 64 and typically much later, with children in mid-life then placed in a position where they could be caring for chronically ill, terminally ill, and/or dying parents for short or substantial periods of time [
Another development after 1994 was increased multiculturalism, with more nontraditional immigrants such as those from Asia coming to Canada and then tending to settle together in larger cities [
The large extent and widespread impact of long-term or chronic and incurable illnesses also became more evident in the years after 1994, with much of the ongoing care associated with chronic illnesses accomplished in the home and often primarily by family caregivers [
Although population aging was widely known to be occurring across Canada, nursing home expansion was minimal [
Following 1994, specialist palliative care advancements and equally important basic end-of-life care developments were common. Although specialist palliative care had become established as a service in most large Canadian hospitals by 1994 through in-hospital palliative care units and/or palliative care teams, the palliative care developments that occurred after 1994 were important for helping to shift death, dying and end-of-life care out of hospital [
Although few in number, hospices also began to be built after 1994 to provide an alternative location for the provision of palliative care. In 1995, the first Canadian hospice for children, Canuck Place, was opened in Vancouver, British Columbia [
Palliative care research also proliferated in this era [
In many provinces, palliative home care was initiated or expanded after 1994 to support home-based clients [
This integrative review report outlines a literature search and analysis process that was designed and conducted to discover the factors or influences for the shift of death and dying out of Canadian hospitals after 1994. An interwoven set of many distinct factors were identified as contributing to this out-of-hospital shift, including multiple health care and health system changes, socio-demographic developments, and palliative or end-of-life care advancements. More people began to receive basic end-of-life care and specialist palliative care in homes and nursing homes in part because hospitals became a less accessible place of care as well as a less desirable care setting for dying loved ones. Homes and nursing homes began to be a more possible and more desired place for end-of-life care, with families often extensively engaged in providing end-of-life care outside the hospital setting. Socio-demographic developments were also important, with many different social, societal, and other Canada-wide factors influencing the location of death and dying. Considerable advances in palliative care specialization and palliative research developments occurred after 1994, with these supporting nonhospital dying processes and thus death out of hospital.
As such, it became evident through this review that an out-of-hospital shift in Canada was the result of many indirect and direct influences or factors that contributed to death and dying in other places. Future research should focus on the supports needed to ensure good deaths occur in all such places and that individuals are dying in the appropriate place. Abuse and unmet needs in the home or other nonhospital care facilities may go undetected. With low staffing levels and less qualified staff in nursing homes being asked to take on more caregiving responsibility, research is also needed now to determine how best to ensure high quality dying processes in nursing homes. Research and knowledge transfer about the benefits of nonhospital deaths are also needed now, as this shift out of hospital could reverse and hospitals once again could become the predominant place of death and dying. While the shift out of Canadian hospitals after 1994 was neither directly planned for, anticipated, nor supported by government policy, the maintenance of this shift is likely to need government policy in the years ahead as the number of deaths increases dramatically in Canada. The large baby boom generation has begun to reach old age and many will require end-of-life care in one form or another.
In closing, although this literature review was exclusively focused on Canadian literature and Canadian events or developments, many of these events and developments could have also occurred in other developed and possibly some developing countries. These same factors and influences could be initiating or supporting an out-of-hospital shift elsewhere, as Canada is not the only country where this out-of-hospital shift has occurred [
The authors declare that there is no conflict of interests regarding the publication of this paper.