Jessica A. Hewitt

The Preferred Place of Last Days: Results of a Representative Population-Based Public Survey

BACKGROUND The place of death is of considerable interest now, yet few studies have determined public preferences for place of end-of-life (EOL) care or final days of life. OBJECTIVE A survey was designed to answer three questions: (1) What are public preferences for the place of last days? (2) Is this place preference related to socio-demographic and other background characteristics? and (3) Is this place preference associated with specified previous death and dying experiences, the preparation of a living will or advance directive, or a viewpoint supportive of death hastening? DESIGN An experienced telephone survey company was commissioned to gain a representative population-based sample and survey participants. In mid-2010, 1203 adults were surveyed in Alberta. Descriptive statistics and multinomial logistic regression were conducted. RESULTS This survey revealed 70.8% preferred to be at home near death; while 14.7% preferred a hospice/palliative care facility, 7.0% a hospital, and 1.7% a nursing home; 5.7% had no stated preference. Marital status was the only predictor of place preference, with widowed persons more often indicating a preference for a hospital or hospice/palliative care facility. CONCLUSIONS These findings suggest homes are the preferred EOL place now for the majority of Albertans, if not other citizens, while at the same time suggesting that marital and living arrangement realities temper EOL place choices and possibilities, with widows best realizing the need for assistance from others when dying. The widespread preference for home-based EOL care indicates public health interventions are needed to promote good home deaths.

An Examination of Palliative or End-of-Life Care Education in Introductory Nursing Programs across Canada

An investigation was done to assess for and describe the end-of-life education provided in Canadian nursing programs to prepare students for practice. All 35 university nursing schools/faculties were surveyed in 2004; 29 (82.9%) responded. At that time, all but one routinely provided this education, with that school developing a course (implemented the next year). As compared to past surveys, this survey revealed more class time, practicum hours, and topics covered, with this content and experiences deliberately planned and placed in curriculums. A check in 2010 revealed that all of these schools were providing death education similar to that described in 2004. These findings indicate that nurse educators recognize the need for all nurses to be prepared to care for dying persons and their families. Regardless, more needs to be done to ensure novice nurses feel capable of providing end-of-life care. Death education developments will be needed as deaths increase with population aging.

Current End-of-Life Care Needs and Care Practices in Acute Care Hospitals

A descriptive-comparative study was undertaken to examine current end-of-life care needs and practices in hospital. A chart review for all 1,018 persons who died from August 1, 2008 through July 31, 2009 in two full-service Canadian hospitals was conducted. Most decedents were elderly (73.8%) and urbanite (79.5%), and cancer was the most common diagnosis (36.2%). Only 13.8% had CPR performed at some point during this hospitalization and 8.8% had CPR immediately preceding death, with 87.5% having a DNR order and 30.8% providing an advance directive. Most (97.3%) had one or more life-sustaining technologies in use at the time of death. These figures indicate, when compared to those in a similar mid-1990s Canadian study, that impending death is more often openly recognized and addressed. Technologies continue to be routinely but controversially used. The increased rate of end-stage CPR from 2.9% to 8.8% could reflect a 1994+ shift of expected deaths out of hospital.

Canadian rural-urban differences in end-of-life care setting transitions.

Few studies have focused on the care setting transitions that occur in the last year of life. A three part mixed-methods study was conducted to gain an understanding of the number and implications or impact of care setting transitions in the last year of life for rural Canadians. Provincial health services utilization data, national online survey data, and local qualitative interview data were analyzed to gain general and specific information for consideration. Rural Albertans had significantly more healthcare setting transitions than urbanites in the last year of life (M=4.2 vs 3.3). Online family respondents reported 8 moves on average occurred for family members in the last year of life. These moves were most often identified (65%) on a likert-type scale as “very difficult,” with the free text information revealing these trips were often emotionally painful for themselves and physically painful for their ill family member. Eleven informants were then interviewed until data saturation, with constant-comparative data analysis conducted for a more in-depth understanding of rural transitions. Moving from place to place for needed care in the last year of life was identified as common and concerning for rural people and their families, with three data themes developing: (a) needed care in the last year of life is scattered across many places, (b) travelling is very difficult for terminally-ill persons and their caregivers, and (c) local rural services are minimal. These findings indicate planning is needed to avoid unnecessary end-of-life care setting transitions and to make needed moves for essential services in the last year of life less costly, stressful, and socially disruptive for rural people and their families.

Age-based differences in care setting transitions over the last year of life

Context. Little is known about the number and types of moves made in the last year of life to obtain healthcare and end-of-life support, with older adults more vulnerable to care setting transition issues. Research Objective. Compare care setting transitions across older (65+ years) and younger individuals. Design. Secondary analyses of provincial hospital and ambulatory database data. Every individual who lived in the province for one year prior to death from April 1, 2005 through March 31, 2007 was retained (N = 19, 397). Results. Transitions averaged 3.5, with 3.9 and 3.4 for younger and older persons, respectively. Older persons also had fewer ER and ambulatory visits, fewer procedures performed in the last year of life, but longer inpatient stays (42.7 days versus 36.2 for younger persons). Conclusion. Younger and older persons differ somewhat in the number and type of end-of-life care setting transitions, a matter for continuing research and healthcare policy.

Why Did an Out-of-Hospital Shift of Death and Dying Occur in Canada after 1994?

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.

Educating Youths to Make Safer Choices: Results of a Program Evaluation Study

Injuries are a leading cause of childhood death and disability. Many injuries are a result of youths taking risks and not avoiding risky situations. An educational program to reduce adolescent injury risk (Prevent Alcohol and Risk-Related Trauma in Youth) has operated out of the Misericordia Hospital in Edmonton Canada since 1992. This reality-based program was evaluated to see if it was impacting program participants. An increase in correct answers for some knowledge, behavior, and attitude questions were found at one week and one month following this 1-day reality-based program. This program was thus considered as having some relevancy in educating grade-9 youths. Although a longitudinal study is needed to determine if this relevancy is long term, this study highlights the importance of reality-based public health programs.

Examining Waiting Placement in Hospital: Utilization and the Lived Experience

This mixed-methods study addressed the problem that although waiting placement is considered a major hospital utilization issue, minimal evidence exists to highlight the extent of it and the personal impact of waiting placement. An analysis of two years of complete hospital data for the Canadian province of Alberta was undertaken to examine waiting placement rates and describe waiting placement patients. Qualitative interviews and observations of elderly patients waiting in hospital for nursing home placement were also undertaken to gain an understanding of the lived experience of waiting for placement in hospital. Only 1.8% of all inpatients were waiting placement with an ALC (Alternative Level of Care) designation, 80% of ALC waits were less than 41 days (mean=29.85, median=14), and 2.2% of total hospital bed days in these two years were used by ALC patients. Three qualitative themes emerged: (a) coming to a realization of this significant move, (b) waiting is boring and distressing, and (c) hospitals are not designed for waiting placement. The findings of this study should raise awareness that although relatively few people wait placement in hospital, there are some major possible negative effects of waiting for placement in hospital for those who wait; with remedies to address waiting placement care deficits needed.