ening, summarizing into a small number of key dimensions, demonstration of broad applicability (region, type of illness, approach to care services, ethnic background), and demonstration that scores improve when processes of care improve (Teno et al., 2001; Teno, 2004).
Many other potential measures of pain management and care planning are listed in Table J-1 and have some evidence to support their use.
Many domains relevant to palliative care lack measures with sufficient supporting evidence for confidence even about whether further development of current approaches would yield useful measures. These include the treatment and prevention of most symptoms other than pain in patients who are very sick and nearing death. Measurement tools are available to address other physical and emotional symptoms, but insufficient work has yet been done to translate these into performance measures for this population. Measures for some symptoms have been developed for other populations, such as nausea in cancer treatment or depression in the elderly, but these do not have sufficient supporting evidence and have not been evaluated in the palliative care population. Many other areas, such as spirituality, life closure, and caregiver burden and bereavement, have measurement tools available, but generally research has not tested whether these vary with better care, whether they have ceiling effects, whether routine measurement is feasible, or most of the other attributes of useful measures of care system quality.
Caregiving and caregiver concerns are areas with particular needs for further development. Caregivers are vital to many elements of the end-of-life experience, including psychosocial distress, life closure, and site of death. The quality and quantity of caregiving can affect many other measurement domains, including symptom management and advance care planning. In addition, the impact of caregiving on the caregivers can have consequences for their physical and emotional health. We identified no performance measures specific to caregiving. Although the After-Death Bereaved Family Interview is an interview of caregivers, it is oriented towards the caregiver’s perception of the patient’s experience rather than towards caregiver issues. In our systematic review of the end-of-life literature (Lorenz et al., 2004), we found that, although many measurement instruments have been developed to examine caregivers’ experiences, interventions for caregivers have had little consistent effect on these outcomes. Outcome measures also differed widely across studies; although caregiver burden was frequently studied, other outcomes included stress, depression, anxiety, satisfaction, caregiver morbidity and mortality, unmet needs, and institutionalization.