Twenty-six research reports were included in the review. With the exception of one study, all of the reports used non-experimental designs. The sample size ranged from a single-case study to a group of 16,945 participants. Seventeen studies were US-based, four were UK-based, two were Canadian and one was Australian (the total does not correspond to 26 included studies).
Communication and shared decision-making.
For NHs, 4 studies provided evidence that the residents may have limited involvement in discussing EOL preferences. Further, how clearly the residents understand EOL care options, or are comfortable with previously documented decisions, is doubtful. Other studies identified variables that may be associated with whether or not the residents are involved in discussions, and that family and friends may feel alone or lacking in sufficient knowledge to assist with decision-making. It appeared that families expected staff to initiate such discussions. For ALFs, no research was located that specifically addressed communication and decision-making regarding EOL care in ALFs.
Symptom assessment and treatment planning.
For NHs, these studies were mostly descriptive in nature and based on resident, family and staff reports. Some studies indicated that residents dying in NHs experience significant physical, emotional and spiritual symptoms; that systematic, evidence-based strategies for recognising common symptoms at EOL are absent; and that staff often lack knowledge about how best to assess and manage symptoms. For ALFs, there was only one study and this addressed an overall population of ALF residents and not specifically residents who were dying.
Characteristics of the health care system.
In NHs, staff reported that regulatory requirements adversely affected EOL care, particularly federal emphasis on restorative and rehabilitative care that mandates the nature of resident assessments, and the implementation of specific care protocols. The status of the residents' faculties also adversely affected EOL care management, and some studies found that staff perceived themselves to be inadequate to provide the EOL care needed. Three studies looked at hospice benefit payments in NHs and this was found to increase the use of NH services. In ALFs, facilities were permitted rather than mandated to provide EOL care. The presence of hospice, family support and additional privately purchased care services were deemed essential for good EOL care.
Limitations of all of the included studies were that the outcomes were usually self-reported, the sample sizes were small, and the data collection methods were inadequate.