It is not enough to define the best treatments and develop models of excellent palliative and end-of-life care, or even to educate health care providers about what works and what doesn’t, although these are all necessary steps. What is important is that dying patients, in the variety of health care settings in which they receive care, actually get the best treatments. The NCPB report Ensuring Quality Cancer Care (IOM, 1999) outlined a vision for the development of “indicators” to cover the spectrum of cancer care— including the dying process—that could be used to hold health care providers, institutions, and health plans accountable for the quality of care given.
As Teno demonstrates in Chapter 3 of this report, we are not close to meeting this mandate for care at the end of life, either for cancer or for other conditions (Table 1-2). Research and demonstration programs will be needed before even a preliminary set of satisfactory indicators can be developed. The focus of early work will be on the development and validation of measurement tools based on administrative data, medical records, and interviews with patients, family members, and health care providers. These instruments must be developed and adapted for different cultures and ethnicities.
Quality indicators are needed for two main purposes: accountability (external use by regulators, health care purchasers, or consumers) and quality improvement (internal use for the purpose of monitoring or continuous quality improvement). The same types of indicators may serve both purposes, but for some aspects, they may have to be different.
At this early stage in development, there is a strong evidence base to support the use of quality indicators for pain management for the purpose of accountability, and in fact, a standard (not specific to end-of-life care or cancer) has just taken effect through the Joint Commission on Accreditation of Healthcare Organizations (JCAHO), requiring all participating hospitals to demonstrate that they adequately monitor and manage the pain of patients (JCAHO, 2000). However, more basic research and demonstration projects are needed to develop indicators for managing other common symptoms (e.g., emotional distress and depression, fatigue, gastrointestinal symptoms). An important aspect of demonstration and validation is monitoring for potential unintended consequences (e.g., patients are sedated contrary to their preferences to improve accountability statistics).
Besides the domain of symptom management, four other domains should be considered for early development and implementation of accountability measures: (1) patient satisfaction, (2) shared decisionmaking, (3) coordination, and (4) continuity of care. In each of these domains, indicators must validly represent the perceptions of the dying person and family members. This means investing in new survey methods that are patient centered and include questions that get at unmet needs.