Measures
Choosing valid and reliable tools to measure palliative care quality in NHs must address specific questions such as, What components of quality need to be measured, i.e., structure, processes of care, and/or outcomes of care?56 Will resident outcomes include self-report, and if so, how should one measure these outcomes in residents with marked cognitive
impairment?57–59 Was the measure developed for or validated in NHs? Several published reviews have focused on dementia-
specific60–63 and nursing home specific palliative care measures.64 Other authors review general palliative care tools that may be valid for use in NHs.65,66 Because the course of dying for NH residents often is prolonged and unpredictable, general quality of life and quality of care measures may also be appropriate evaluation tools.57,67,68 Thompson and colleagues tested a two-pronged measurement model comprised of quality of care (i.e., systems/facility-level factors that influence the dying experience) and quality of dying (i.e.,resident and family outcomes). Table 1 provides examples of validated measures that reflect these two factors.
In addition to these measures, many studies rely on the MDS, a federally mandated assessment tool used in the vast
majority of NHs in the United States and several other countries. The MDS version 3.0, which has been collected since October 2010, is a better measure for palliative care processes and outcomes than the earlier version, because it requires staff to solicit and document resident input when possible. Interreliability of MDS 3.0 is very good to excellent, and the updated MDS demonstrates improved validity compared to version 2.0.70 In addition, it has new and expanded clinically relevant variables related to pain and other symptoms, decision making, and goals of care.71 Despite improvement to the MDS, there remain serious gaps in collecting
and reporting palliative care specific processes and outcomes. To address this gap, the interRAI collaborative developed
the interRAI palliative care assessment tool to augment relevant palliative care information that was already
included in the MDS 2.0.72 To date, however, psychometric testing in NHs has been limited and the tool does not appear
to be widely used.