Executive Summary, Toolkit Conference

Physician assisted suicide has become an issue of increasing public concern and media attention. A central portion of court cases has focused on individual rights. It has been argued that an important aspect of this debate ought to be how well our hospitals and other health systems care for dying patients. Drs. Melinda Lee and Susan Tolle have noted that the "silver lining" of this debate may be the stimulus for health care institutions to examine the quality of care for dying and seriously ill patients. The aim of this conference was to provide health care institutions with a resource guide (a "toolkit") that would allow them to examine and improve their quality of care for dying patients and their families. With funding support from the Nathan Cummings Foundation and the Robert Wood Johnson Foundation, a multidisciplinary group of 27 persons assembled to review current knowledge about measuring quality of care at the end of life, make recommendations about the use of existing measures, and outline important issues that need urgent work for the vision of the "toolkit" to go forward.

Deming stated that, "If you don't measure it, you can't improve it." Our ultimate vision for the "toolkit" was that health care institutions be able to use the "toolkit" to examine care of the dying, identify opportunities for improvement, and then undertake interventions to improve and enhance the quality of care. The results of this conference represent an early effort to review existing instruments to examine the quality of care for dying persons and their families. This executive summary briefly summarizes the vision for the toolkit and outlines important research and design questions that we encourage both grant funders and researchers consider in the design of future measures to examine quality of care at the end of life.

1. Measures must be clinically meaningful; clinicians must be convinced that the measure has face validity, that differences are clinically relevant, that the measure detects changes with time, and that a result can raise provider awareness. Measures must also be manageable in their application.

2. The focus of these measures is on the "middle manager" who wants to ask the following questions: "How are we doing in caring for dying patients? What are our strengths? What are our opportunities for improvement?" The ultimate use of these measures will be for quality improvement. In the future, with experience with the measures, development of guidelines, and research, the use of these measurements will be extended to informing the consumer and purchasers of health care.

3. Such measures must incorporate both the patient and family perspective on the quality of care at the end of life (it should be noted that family is used in the broadest sense, potentially including the patient's partner or other loved ones). The medical record review of people who have died is another important perspective on medical care at the end of life.

4. We urge rapid cycles of improvement in measurement. The first Toolkit should quickly become outdated with research and further development of guidelines.

Comment:
Limited research to date has been undertaken to examine the quality of care for seriously ill and dying patients. Given this paucity of research, an important first step is to understand the values of both patients and their loved ones. From their unique perspective of this experience, what defines patient and family centered medical care? Equally important is descriptive research to examine current knowledge about the quality of care with existing instruments and with the use of qualitative research techniques. Such research should not only focus on the negative, but also opportunities for growth at the end of life.

In developing measures to guide quality improvement, it is important that measures are clinically meaningful. Clinicians must "buy in" that measures are reflecting important aspects of medical care. If a process of care is measured, there ought to be evidence that the process is related to the valued outcome, or that the process is valued as an endpoint based on overwhelming public and professional consensus. Careful attention should be heeded to assure that as we define measures, we are also defining standards of care. In developing new measures, we urge that consideration be given to the involvement of national professional organizations and managers in a dialogue such that their views are considered. If the instruments are going to be used, it is important that the measures do not impose unreasonable burdens so that it is realistic to collect reliable and valid information. Involving clinicians and mid-level managers is an important step to assure that instruments are both clinically valid and feasible.

Limited research to date has examined or reported on the degree to which measures are responsive to improvement. Measures must be responsive and eventually measures must be able to discriminate between health care institutions that are and are not delivering quality medical care. It is a realistic goal that measurement tools will be developed that both rate health care institutions on the quality of care and provide consumers with information on deciding which health care plan to select.

There are fundamental details which must be addressed in the design of both surveys and chart review instruments. Some of these details can be resolved with further empirical research (e.g., what do patients really value in end of life care?) while other issues will need to be resolved by consensus. Among the key issues that the group identified were the following.

1. What are the proper domains that define quality of care from the patient and family perspective? Are health care institutions accountable for the outcomes in a particular domain?

The work of the American Geriatric Society is an important step in defining the domains of quality medical care at the end of life. It is important that measures reflect patient and family views of what defines quality medical care. An important litmus test is whether there is broad consensus or empirical studies that show that health care institutions ought to be held accountable for those outcomes. Simply stated, is it the prerogative and the capability of the health care system to influence that chosen outcome?

Previous research has noted that patients with cancer lose the majority of their function and experience most of their symptoms in the last 1-2 months of life. Many instruments focus on this sentinel time period. However, diseases other than cancer may not follow this trajectory. Furthermore, concerns with quality of care can occur throughout the patient's illness. Unrelieved pain is problematic at any time period. Different instruments ought to look at important sentinel time periods throughout the illness course to ensure quality medical care.

Nearly one in three patients are unable to be interviewed in the last week of life. To simply disregard their experience would miss important information on the quality of medical care. Yet, a proxy is only able to report on their observations or perceptions of the quality of care. Family members are often more critical and provide an important perspective that can lead to improving the quality of care. Research is needed to understand who can best serve as the respondent. Do you need to use multiple respondents? Such research is needed to design valid instruments.

4. What is the cost effectiveness of various strategies to get information on the quality of care?

Among the plausible sources of information on the quality of medical care are the medical record, patient, and family interview (both prospective and retrospective interviews after the patient's death). Each have their own costs and limitations regarding accuracy of the data. Additionally, there are various strategies for collecting data which ought to be evaluated (e.g., self-administered, telephone interview, personal interview). Research ought to seek to determine the most cost effective means to get reliable and valid indicators of quality medical care.

5. How are the respondents' views influenced by the wording and location of the question in the survey?

Research is needed to examine the degree to which the wording and the location of questions influence the respondents' views. For example, does asking questions on symptom data prior to questions on satisfaction influence the patient's response? Total survey design that employs cognitive interviews is important to understand the process undertaken by respondents in answering survey questions. It is only through such efforts that surveys will be reliable and valid measures. The above highlights key areas for future consideration in the design of valid and reliable instruments. Measuring the quality of care is the cornerstone to improving and enhancing the quality of care. To that end, the "toolkit" conference aimed to provide a systemic review of the existing instruments to examine quality of care, make recommendations for promising instruments, create new instruments, and identify a research agenda that focuses on the rapid improvement in measurement of the quality of care at the end of life. Enclosed in appendices are the following items which we are hope are helpful to institutions in improving and enhancing the quality of care:

Appendix A - Literature review and recommendations for measures in the 10 domains recommended by the American Geriatric Society.
Appendix B - Chart Audit Instrument for retrospective audit of the medical record.
Appendix C - Family interview after the patient's death

For further information on this effort, please contact:
Barbara Kreling
Center to Improve Care of the Dying
2175 K St., NW
Suite 820
Washington, DC 20037

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Measuring Quality of Life

Executive Summary of the Conference on Making a Toolkit of Instruments to Measure End of life Care (TIME)