This study is concerned with methods to measure population-based indicators of quality end-oflife care. Using a retrospective cohort approach, we assessed the feasibility, validity and reliability of using administrative databases to measure quality indicators of end-of-life care in two Canadian provinces. The study sample consisted of all females who died of breast cancer between 1 January 1998 and 31 December 2002, in Nova Scotia or Ontario, Canada. From an initial list of 19 quality indicators selected from the literature, seven were determined to be fully measurable in both provinces. An additional seven indicators in one province and three in the other province were partially measurable. Tests comparing administrative and chart data show a high level of

Although end-of-life care is not a primary function of the emergency department (ED), in reality, many access this department in the later stages of illness. In this study, ED use by patients registered with the Capital Health Integrated Palliative Care Service (CHIPCS) is examined and CHIPCS patient characteristics associated with ED use identified. Overall, 27% of patients made at least one ED visit while registered with CHIPCS; 54% of these resulted in a hospital admission. ED visiting was not associated with time of day or day of the week. Multivariate logistic regression results suggest older patients were significantly less likely to make an ED visit. Making an ED visit was associated with hospital death, rural residence (particularly for women), and having a parent or relative other than a spouse or child as the primary caregiver. Further research may suggest strategies to reduce unnecessary ED visits during the end of life.

This study identifies elements of primary and integrated care that address the gap between preferred and actual place of care.

BackgroundPatients often experience changes or transitions in where and by whom they are cared for at the end of life. These cause stress for both patients and families. Although not all transitions during the end of life can be avoided, advance identification of those who could potentially experience numerous transitions may allow providers and caregivers to anticipate the problem and consider strategies to minimize their occurrence. This study examines the relationship between patient characteristics and the total number of transitions experienced by the patient from the date of admission to a palliative care program (PCP) to death and during final weeks of life.MethodsSubjects included all adults registered with the PCP in Halifax, Nova Scotia, Canada between 1998 and 2002 and who had died during that period. Data was extracted from the regional PCP database and linked to census information. Transitions were defined as either: 1) a change in location of where the patient was cared for; or 2) a change in which service (specialist groupings, primary care, etc) provided care. Descriptive statistics were calculated plus rate ratios for the association between patient characteristics and total number of transitions.ResultsIn total, 3972 patients made 5903 transitions during the study period. Although 28% experienced no transitions, over 40% experienced one and 6.3% five or more. At least one transition was made by 47% during the last four weeks of life. Adjusted results suggest women, the elderly and more recent death are associated with experiencing fewer transitions. Multiple transitions were associated with a hospital death and a cancer diagnosis. During the last month of life, age was no longer associated with the total number of transitions, cancer patients were found to experience a similar number or fewer transitions than patients with a non-cancer diagnosis and pain and symptom control become a significant factor associated with a greater number of transitions.ConclusionOur data suggest there is some variation in the number of transitions associated with the demographics and diagnoses of patients. Associations with gender and age require further exploration as does the contribution of caregiver supports and symptom issues.

BackgroundImproving end-of-life care is an important international issue. Recently Nova Scotia researchers conducted a mortality follow-back survey to provide a population-based description of care provided to adults during their last 30 days of life as perceived by knowledgeable bereaved family members. Here we describe the relationship between the location where the decedent received the majority of care during their last 30 days and the informant’s perception of the extent of unmet need, as defined by multiple domains of patient-focused, family-centred care.MethodDeath certificate identified informants (next-of-kin) of eligible adults who died between June 2009 and May 2011, in Nova Scotia, Canada were invited to participate in a telephone interview based on the After-Death Bereaved Family Member Interview. Whether or not the informant expressed unmet need or concerns for six patient-focused, family-centred care domains were assessed in relation to the location where the majority of care occurred during the decedent’s last 30 days.Results1358 informants took part (25% response rate). Results of 1316 eligible interviews indicated home (39%) was the most common location of care, followed by long-term care (29%), hospital (23%) and hospital-based palliative-care units (9%). Unmet need ranged from 5.6% for dyspnea help to 66% for the emotional and spiritual needs of the family. Although the mean score for overall satisfaction was high (mean = 8.7 in 1–10 scale; SD 1.8), 57% were not completely satisfied. Compared to home, adjusted results indicated greater dissatisfaction with overall care and greater communication concerns in the hospital. Greater unmet need occurred at home for dyspnea. Less overall dissatisfaction and unmet need were expressed about care provided in long-term care facilities and hospital-based palliative-care units.ConclusionBereaved informants were generally highly satisfied with the decedent's care during their last 30 days but variations were evident. Overall, no one location stood out as exceptionally different in terms of perceived unmet need within each of the patient-focused, family-centred care domains. Communication in various forms and family emotional and spiritual support were consistently viewed as lacking in all locations and identified as targeted areas for impacting quality care at end of life.