First Conference,
August 27-28, 1996

Second Conference,
September 28-30, 1997

Third Conference,
June 15-17, 2000

 

Executive Summary of the First TIME Conference -- August 27-28, 1996

Summary by Joan Teno, M.D., M.S.

Brown University Center for Gerontology and Health Care Research

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.

Vision for Measures included in the Toolkit

1. Measures must be clinically meaningful and manageable in their application.

2. The focus of these measures is on the "middle manager" who wants to ask the following questions:

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. 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.
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.

5. 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.

6. 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 espondents 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.

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Executive Summary of the Second TIME Conference -- September 28-30, 1997

The following summary is adapted from the conference white paper.

Citation- Teno JM, Byock I, Field MJ. Research Agenda for Developing Measures to Examine Quality of Care and Quality of Life of Patients Diagnosed with Life-Limiting Illness. Journal of Pain and Symptom Management. 1999; 17, 2: 75-82.

Despite the universality of death and recent national concerns about care at the end of life, little attention has been given to developing the conceptual models, measurement tools, and evidence base necessary for achieving quality medical care and quality of life of dying patients and their loved ones. The overarching goal of this second TIME conference was to develop a research agenda for measuring quality of care and quality of life for persons diagnosed with a life-limiting illnesses and for persons who are in the process of "actively dying." More specifically, the task presented for this conference was to reach accord on the following three key questions:

1.    What are the goals of a Toolkit of Instruments to Measure End of Life Care?

• Measures should be patient-focused, family-centered, clinically meaningful, and manageable in their application. At the same time, measures should strive for high standards of reliability, validity, and responsiveness (i.e., ability to detect change over time).
• The eventual Toolkit should strive for a user-friendly format (i.e., data collection protocols, analytic strategy, and report formats). Instruments should be in a format that would allow persons to "plug and play."  That is, there should be a core set of questions and specific modules that would attend to other domains of the quality of care. The goal should be to make it easy for an institution to perform a baseline assessment of the opportunities to improve the quality of care or assess the impact of a quality improvement effort.
• In the initial stages of development of the Toolkit, the main focus should be on development of measures for quality improvement and research. In the future, with experience in using measures for quality improvement, refinement of guidelines, and further research across multiple health care settings and geographic locations, measurements will be appropriately modified or new tools created to be used for accountability.
• Measures should incorporate both the patient and family perspectives on quality of care at the end of life.
• Measures should examine both the process as well as the outcomes of care. An important goal of future research is to understand the relationship of the system of care, the process of care, and the associated patient and family outcomes.

2.    Based on the current conceptual models of quality of care and quality of life, what are the important domains in which existing measures need to be refined or new measures developed?

Ideally, measures should be developed from existing standards—especially when applied for purposes of accountability—and those standards should be based on accurate empirical information from descriptive and experimental research. Choice of domains should reflect the consumer viewpoint. Focus groups and in-depth interviews with seriously ill patients, their families, and surviving loved ones can properly guide selection of priority domains. Furthermore, measures should be synergistic with ongoing work in the development of guidelines and standards.

3.    What empirical research is needed to address the validity of proposed measures, potential sources of information about the quality of care and quality of life, and implementation of measurement tools in health care systems?

• Through focus groups and other data collection efforts that recruit participants from diverse cultures and social circumstances, patients and their loved ones should have a voice in the development of measurement tools.
• Cognitive testing among people of different cultures and socioeconomic groups represents an essential methodology in developing highly reliable questions.
• The timing and sources of information about quality of care and quality of life are important priority areas for further empirical research.
• Given the inherent uncertainty in prognostication and the fact that many actively dying patients are unable to be interviewed, proxies are an important source of information on the quality of care. Important questions remain on who should serve as the proxy. For example, should it be the person who acted as the surrogate decision-maker or the family member who supervised care on a daily basis?
• Ultimately, for measurement tools to impact the quality of care, protocols must be developed for data collection, analyses, and preparation of reports that present the relevant information in an easy-to-understand manner that highlights opportunities to improve medical and supportive care.
• An important consideration is the need to foster collaboration and to maximize the return on limited research funding. One potential path for proceeding is the establishment of a collaborative (potentially named the Palliative Care Outcome Collaborative) which could have two overarching goals. First, the collaborative could act as a clearinghouse for existing measures in palliative care medicine. Second, the collaborative could facilitate the creation of new measurement tools with participating institutions involved in validating those tools and testing their responsiveness to interventions.

Along with the white paper, other articles resulting from this conference are published in a special issue of Journal of Pain and Symptom Management (1999 February; Volume 17, No. 2). These articles include:

Byock IR. Conceptual Models and the Outcomes of Caring. (pp. 83-92)

Stewart AL, Teno J, Patrick DL, Lynn J. The Concept of Quality of Life of Dying Persons in the Context of Health Care. (pp. 93-108)

Teno JM, Coppola KM. For Every Numerator, You Need a Denominator: A Simple Statement But Key to Measuring the Quality of Care of the "Dying". (pp. 109-113)

Fowler FJ, Coppola KM, Teno JM. Methodological Challenges for Measuring Quality of Care at the End of Life. (pp. 114-119)

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Executive Summary of the Third TIME Conference -- June 15-17 2000

Not currently available. Please check back periodically.

 

Questions?  Contact Dr. Joan Teno via email at Brown University.

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Funding for this project was provided by