Putting patient and family voice back into measuring quality of care for the dying.

Quality of care and quality of life change substantially for those with a serious chronic illness and nearing the end of their lives. As one dies, life takes on new shape-values change and things once ignored become more important. Existing quality of care measures do not attend to the changes in priorities or to dimensions that acquire new significance (e.g., Spirituality and transcendence). An important impediment to addressing the inadequacies in the evidence base for palliative care, improving shortcomings of care, and holding institutions or health care systems accountable for the quality of care is the lack of valid and reliable measurement tools. In this article, an overview is presented of an ongoing research effort to develop measurement tools which will utilize the patient and family perspective to measure the quality of care.