Institutional Accountability in End-of-Life Care: Organizational Leadership, Measurement, and Consumer Demand

Abstract

225 IN THE UNITED STATES , recent efforts in the national movement to improve end-of-life care have primarily been driven by individual palliative care experts and their professional specialty societies. These efforts include, for example, a recent statement of principles adopted by a large number of specialty societies,1 identification of clinical competencies that all physicians2,3 and nurses4 should be able to demonstrate, calls for reform in medical education5 and in medical textbooks,6 and revision of licensing and professional certification. These first steps have been essential, foundational ones. However, efforts targeted exclusively to the skills of individual clinicians cannot do the job alone.7 The next wave of reform efforts must focus on institutional accountability and will need to rely upon organizational leadership and, hopefully, consumer pressure. In the process, measurement will play a key role. In its landmark report, Approaching Death, the Institute of Medicine acknowledged the need for institutional accountability when it recommended that healthcare institutions apply methods of continuous quality improvement to the care of the dying.2 Various other groups have also called on health-care institutions to hold themselves accountable for the quality of end-of-life care they provide patients and families.8–12 In all these instances, measuring outcomes of care is seen as central to institutional accountability. Outcome measurement is also centrally related to consumers and in at least two distinct ways. First, quality data is most effective when it is shared publicly, so that consumers and purchasers of health care can choose rationally on the basis of quality. Second, outcome measures ought to be designed on the basis of patient and family needs, as they understand them. In this issue of the Innovations section of this journal, we spotlight two outcome measurement tools developed by Irene Higginson at St. Christopher’s Hospice in London.13 Both the Support Team Assessment Schedule (STAS) and her more recent Palliative Care Outcome Scale (POS) are “audit” tools—data collection instruments that allow palliative care services to audit how well they are performing on a range of issues considered crucial to optimal end-of-life care. Both tools have been designed principally for use with endstage cancer patients and their families.14,15 The STAS has been used by 120 palliative care researchers in a variety of different health care settings, ranging from hospitals to home-based hospices, residential hospices, day care settings, and nursing homes. Seventy-five percent of these applications have occurred in the United Kingdom, but 25% are ongoing in a wide range of countries, including Canada, Australia, Poland, Spain, Singapore, Belgium, France, Ireland, Sweden, Holland, and the United States. Following the interview with Dr. Higginson, we present comments from Dr. Franco Toscani, who describes his experience using the STAS on his palliative care service in Cremona, Italy.16 Dr. Toscani’s remarks are particularly pertinent in that the Italian government has just earmarked 450 billion lira, or roughly $238 million dollars, to the establishment of hospices. More funds are expected next year for the establish-