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Background Patients 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. Methods Subjects 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. Results In 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. Conclusion Our 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.

Background Transitions in the location of care and in who provides such care can be extremely stressful for individuals facing death and for those close to them. The objective of this study was to describe the distribution of transitions in care experienced by palliative care patients following admission to a comprehensive palliative care program (PCP). A better understanding of these transitions may aid in reducing unnecessary change, help predict care needs, enhance transitions that improve quality of life, guide health care system communication links and maximize the cost-effective utilization of different care settings and providers. Methods Transition and demographic information pertaining to all patients registered in the PCP at the Queen Elizabeth II Health Sciences Centre (QEII), Halifax, Nova Scotia, Canada between January 1, 1998 and December 31, 2002 and who died on or prior to December 31, 2002 was extracted from the PCP database and examined. A transition was defined as either: (1) a change in location of where the patient was cared for by the PCP or, (2) a change in which clinical service provided care. Descriptive analysis provided frequencies and locations of transitions experienced from time of PCP admission to death and during the final two and four weeks of life, an examination of patient movement and a summary of the length of stay spent by patients at each care location. Results Over the five year period, 3974 adults admitted to the QEII PCP experienced a total of 5903 transitions (Mean 1.5; standard deviation 1.8; median 1). Patients with no transitions (28%) differed significantly from those who had experienced at least one transition with respect to survival time, age, location of death and diagnosis (p < 0.0001). The majority of patients were admitted to the PCP from various acute care units (66%). Although 54% of all transitions were made to the home, only 60% of these moves included care provided by PCP staff. During the last four weeks of life, 47% of patients experienced at least one transition; 36% during the final two weeks of life. Shorter stays in each location were evident when care was actively provided by the PCP. Conclusion A relatively small number of patients under the care of the PCP at the end of life, made several transitions in care setting or service provider. These particular patients need closer scrutiny to understand why such transitions take place so that clinical programs may be designed or modified to minimize the transitions themselves or the impact transitions have on patients and families.

This article reviews the purposes of health care databases and the findings from a literature review of the use of patient databases in palliative care. We present the history and goals of databases developed in two Canadian settings, Hamilton and Halifax. We present data on the strengths, limitations, and difficulties encountered in each setting. We review the types of data collected and the potential of these databases, and we offer practical recommendations for others looking to set up such systems.