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Suggested Citation:"Appendix F." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
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F Measuring Care at the End of Life

Workshop on Toolkit of Instruments to Measure End-of-Life Care*

Woods Hole, Massachusetts.

August 27–28, 1996

AGENDA

August 27

1:30–2:30

INTRODUCTION AND OVERVIEW

 

Joan Teno,M.D.**

Center to Improve Care of the Dying

The George Washington University

2:30–3:00

What domains should be measured at the end of life?

 

Joanne Lynn, M.D.

Director, Center to Improve Care of the Dying

The George Washington University

 

3:00–4:30

Presentation and discussion of quality of life and physical function

 

Anita Stewart, Ph.D.

Institute for Health and Aging

University of California, San Francisco

*  

Organized by the Center to Improve Care of the Dying with support from the Nathan Cummings Foundation.

**  

Now at Brown University.

Suggested Citation:"Appendix F." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×

 

Anne Wilkinson, Ph.D.

Center to Improve Care of the Dying

The George Washington University

4:30–6:00

Presentation and discussion of physical and emotional symptoms

 

Jane Ingham, M.D.

Lombardi Cancer Center

Georgetown University

August 28

9:00–10:00

Presentation and discussion of patient and family satisfaction

 

Joan Teno, M.D.

10:00–11:00

Presentation and discussion of provider skill and continuity and advance care planning

 

Molla Donaldson, M.S.

Institute of Medicine

11:00–12:00

Presentation and discussion of bereavement and family burden

 

Barbara Kreling

The George Washington University

 

Kristen Landrum

Center to Improve Care of the Dying

The George Washington University

1:00–2:00

Presentation and discussion of spirituality and transcendence

 

Barbara Kreling

2:00–3:00

Next Steps

 

Joan Teno, M.D.

Suggested Citation:"Appendix F." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
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PARTICIPANTS

Larry Bergner, M.D.

Vice President for Public Health and Epidimiology

National Opinion Research Center

Ira Byock, M.D.

Director, The Palliative Care Service

President, Missoula Demonstration Project

Carolyn Cocotas

Assistant Vice President, New Measurement Development

National Committee for Quality Assurance

Molla Donaldson, M.S.

Senior Program Officer

Institute of Medicine

Susan Edgman-Levitan

President

The Picker Institute

Linda Emanuel, M.D.

Vice President

American Medical Association

Marilyn Field, Ph.D.

Deputy Director, Health Care Services

Institute of Medicine

Jack Fowler, Ph.D.

Center for Survey Research

University of Massachusetts

Rosemary Gibson

Program Officer

Robert Wood Johnson Foundation

Jane Ingham, M.D.

Director, Palliative Care Program

Lombardi Cancer Center

Georgetown University

Suggested Citation:"Appendix F." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×

Robert Kliegman, M.D.

Chair, Department of Pediatrics

Medical College of Wisconsin

Barbara Kreling

Research Scientist, Division of Research Programs

The George Washington University

Kristen Landrum

Research Assistant, Center to Improve Care of the Dying

The George Washington University

Joanne Lynn, M.D.

Director, Center to Improve Care of the Dying

The George Washington University

Neil MacDonald, M.D.

Director, Cancer Bioethics Program

McGill University

Melanie Merrimen, Ph.D.

Director of Outcomes Measurement

VITAS Healthcare Corporation

Vincent Mor, Ph.D.

Associate Professor of Research

Centers for Long-Term Care Gerontology and Health Care Research

Brown University

Naomi Naierman

President/CEO

American Hospice Foundation

Donald Patrick, Ph.D.

Professor, Department of Health Services

University of Washington

Richard Payne, M.D.

Chief, Pain and Symptom Management Section

M.D. Anderson Cancer Center

Suggested Citation:"Appendix F." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×

Linda Siegenthaler

Center for Primary Care Research

Agency for Health Care Policy and Research

Shoshanna Sofaer, DR.PH.

Director, Division of Research Programs

The George Washington University

Anita Stewart, Ph.D.

Institute for Health and Aging

University of California, San Francisco

William Stubing

President, Greenwall Foundation

Joan Teno, M.D.

Co-Director, Center to Improve Care of the Dying

The George Washington University

Anne Wilkinson, Ph.D.

Associate Professor of Research

Center to Improve Care of the Dying

The George Washington University

Suggested Citation:"Appendix F." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×

Workshop Summary

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

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 to 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. 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 guide-
Suggested Citation:"Appendix F." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×
  1. lines, and research, the use of these measurements will be extended to inform consumers and purchasers of health care.
  2. 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.
  3. 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 focus not only on the negative, but also on 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 paid 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.

Suggested Citation:"Appendix F." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×
Research Priorities and Important Design Questions

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?

  2. What are the proper time periods to assess the quality of care?

    Previous research has noted that patients with cancer lose the majority of their function and experience most of their symptoms in the last one to two 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.

  3. Who is the respondent? What is he or she able to accurately report on?

    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.

Suggested Citation:"Appendix F." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×
  1. 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.

  2. 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 yield accurate 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.

Measurement Tools Suggested as Promising for Further Development and Testing in End-of-Life Care

PHYSICAL SYMPTOMS, compiled and reviewed by Jane Ingham

Verbal Rating Scale (Lasagna, L. Analgesic methodology: A brief history and commentary. Journal of Clinical Pharmacology May–June:373–375, 1980).

McGill Short Pain Inventory (Melzack, R. The McGill Pain Questionnaire. In Pain Measurement and Assessment. New York: Raven Press, 1983).

Wisconsin Brief Pain Questionnaire (Daut, R.L., Cleeland, C.S., and

Suggested Citation:"Appendix F." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×

Flanery, R.C. Development of the Wisconsin brief pain questionnaire to assess pain in cancer and other diseases. Pain 17:197–210, 983).

Memorial Pain Questionnaire (Fishman, B., Pasteranak, S., Wallenstien, S.L., et al. The memorial pain assessment card: A valid instrument for the evaluation of cancer pain. Cancer 60:1151–1158, 1987).

Pain as Assessed in the Medical Outcome Study (Hays, R.D., Nelson, E.C., Rubin, H.R., et al. Further evaluation of the PJHQ scales. Medical Care 28: S29–S39, 1990).

Descriptor Differential Scale (Gracely, R.H., and Kwilosz, D.M. The descriptor differential scale: Applying psychophysical principles to clinical pain assessment. Pain 35:279–288, 1988).

Integrated Pain Score (Ventrafridda, V., De Conno, F., Di Trapani, P., et al. A new method of pain quantification based on a weekly self-description record of the intensity and duration of pain. In: Bonica J, et al., eds. Advances in Pain Research and Therapy. vol. 5. New York: Raven Press, pp. 891–895, 1983).

West Haven-Yale Multidimensional Pain Inventory (Kerns, R.D., Turk, D.C., and Rudy, T.E. The West Haven-Yale multidimensional pain inventory. Pain 23:345–356, 1985).

Baseline Dyspnea Index (Mahler, D.A., and Wells, C.K. Evaluation of clinical methods for rating dyspnea. Chest 93:580–586, 1988).

Quality of Life in Chronic Lung Disease (Guyatt, G.H., Berman, L.B., Towsend, M. et al. A measure of quality of life for clinical trials in chronic lung disease. Thorax 42:773–778, 1987).

Visual analog scale to evaluate fatigue severity (Lee, K.A., Hicks, G., and Nino-Murchia, G. Validity and reliability of a scale to assess fatigue. Psych Research 36P:291–298, 1991).

Borg Rating of Dyspnea (Belman, M.J., Brooks, L.R., Ross, D.J., and Mohsenfar, Z. Variability of breathlessness measurement in patients with chronic obstructive pulmonary disease. Chest 99:566–571, 1991).

MULTIPLE SYMPTOMS (physical and emotional), compiled and reviewed by Joan Teno

Support Team Assessment Schedule (Butters, E., Higginson, I., George, R., Smits, A., et al. Assessing the symptoms, anxiety and practical needs of HIV/AIDS patients receiving palliative care. Quality of Life Research 1:47–51, 1992).

Symptom Distress Scale (McCorkle, R. Development of a symptom distress scale. Cancer Nursing 373–378, 1978).

Rotterdam Symptom Checklist (de Haes, J.C., van Kippenberg, F.C., and Neijt, J.P. Measuring psychological and physical symptom distress in

Suggested Citation:"Appendix F." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×

cancer patients: Structure and application of the Rotterdam Symptom Checklist. British Journal of Cancer 62:1034–1038, 1990).

Edmonton Symptom Assessment System (Bruera, E., Kuehn, N., Miller, M., Selmser, P., and Macmillan, K. The Edmonton Symptom Assessment System (ESAS): A simple method for the assessment of palliative care patients. Journal of Palliative Care 7:6–9, 1991).

The Quality of Life Index (Spitzer, W.O., Dobson, A.J., Hall, J., et al. Measuring the quality of life of cancer patients: A concise QL-index for use by physicians. Journal of Chronic Disease 34:585–597, 1981).

EORTC QLQ (Anderson, N.K., Ahmedzai, S., Bullinger, M., et al. The European Organization for Research and Treatment of Cancer QOL-C30: A quality of life instrument for use in international trials in oncology. Journal of the National Cancer Institute 85:365–376, 1993).

Memorial Symptom Assessment Scale (Portenoy, R.K., Thaler, H.T., Kornblith, A.B., Lepore, J.M., et al. The memorial symptom assessment scale: An instrument for the evaluation of symptom prevalence, characteristics and distress. European Journal of Cancer 30A:1326–1336,1994).

Chronic Respiratory Disease Questionnaire (Guyatt, G.H., Berman, L.B., Townsend, M., Pugsley, S.O., et al. A measure for the quality of life for clinical trials in chronic lung disease. Thorax 42:773–778, 1987).

Lung Cancer Symptom Scale (Hollen, P.J., Gralla, J.R., Kris, M.G., and Potanovich, L.M. Quality of life assessment in individuals with lung cancer: Testing the lung cancer symptom scale (LCSS). European Journal of Cancer 29A:S52–S58, 1993).

Prostrate Cancer Index Quality of Care In Prostrate Cancer, (UCLA Quality of Life Project. Prostrate Cancer Index, 1996).

Cancer Rehabilitation Evaluation System (Schag, C.A.C., Ganz, P.A., and Heinrich, R.L. Cancer rehabilitation evaluation system-short form (CARES-SF). Cancer 68:1406–1413, 1991).

National Hospice Study (Greer 1983, 1988; Reuben, D.B., Mor, V., and Hiris, J. Clinical symptoms and length of survival in patients with terminal cancer. Archives of Internal Medicine 148:1586–1591, 1988).

Hospice Quality of Life Index (McMillan, S.C., and Mahon, M. Measuring quality of life in hospice patients using a newly developed hospice quality of life index. Quality of Life Research. 3:437–447, 1994).

McGill Quality of Life Questionnaire (Cohen, S.R., Mount, B.M., Strobe, M.G., and Bui, F. The McGill quality of life questionnaire: A measure of quality of life for people with advanced disease. Palliative Medicine 9:207–219, 1995).

EORTC QOL-30 (Aaronson, N.K., Ahmedzai, S., Bergman, B., et al. The European organization for research and treatment of cancer QLQ-C30:

Suggested Citation:"Appendix F." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×

A quality-of-life instrument for use in international clinical trials in oncology. Journal of the National Cancer Institute 85:365–376, 1993).

VITAS Quality of Life Index (VITAS, Byock, I.R. Missoula-VITAS Quality of Life index (version 25S). VITAS Healthcare Corp., 1995).

EMOTIONAL SYMPTOMS, compiled and reviewed by Joan Teno

CES-D Scale (Radloff, S.F. The CES-D Scale: A self-report depression scale for research in the general population. Applied Psychology Measurement 1:385–401, 1977).

Mental Health Inventory (Ware, J.E., Jr, Johnston, S.A., Davies-Avery, A, et al. Conceptualization and Measurement of Health for Adults in the Health Insurance Study. Vol. III. Mental Health. Santa Monica, CA: Rand Corporation, 1979; Berwick D.M., Murphy J.M., Goldman P.A., et al. Performance of a five-item mental health screening test. Medical Care 29:169–176, 1991).

Profile of Mood States (Cella, D.F., Jacobson, P.B., Orlav, E.J., Holland, J.C., et al. A brief POMS measure of distress for cancer patients. Journal of Chronic Disease 40:939–942, 1987).

Beck Depression Index (Beck, A.T., Ward, C.H., Mendelson, M., et al. An inventory for measuring depression. Archives of General Psychiatry 4:561–571, 1961).

Hospital Anxiety and Depression Scale (Zigmond, A.S., and Snaith, R.P. The hospital anxiety and depression scale. Acta Psychiatr Scand 67:361–370, 1983).

Symptom Anxiety and Depression Scale (Bedford, A., Foulds, G.A., and Sheffield, B.F. A new personal disturbance scale (DSSI/SAD). British Journal of Social and Clinical Psychology 15:387–394, 1976).

Geriatric Depression Scale (Yesavage, J.A., Brink, T.L., Rose, T.L., et al. Development and validation of a geriatric depression scale: A preliminary report. Journal of Psychiatric Research 17:37–43, 1983).

General Health Questionnaire (Goldberg, D.P. The detection of psychiatric illness by questionnaire. Oxford University Press: London, 1972).

The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments Afterdeath interview (Lynn, J., Teno, J.M., Philips, R.S., and Wu, A.W. Dying experience of older and seriously ill patients: Findings from the SUPPORT and HELP projects. Provisionally accepted, Annals of Internal Medicine, 1996).

FUNCTIONAL STATUS MEASURES, compiled and reviewed by Anne Wilkinson

Index of Independence in Activities of Daily Living (ADL) (Katz, S., Ford,

Suggested Citation:"Appendix F." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
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A.B., Moskowitz, R.W., et al. Studies of illness in the aged. The Index of ADL: A standardized measure of biological and psychosocial function. Journal of the American Medical Association 185:914–919, 1963).

The Barthel Index (Mahoney, F.I., Wood, O.H., and Barthel, D.W. Rehabilitation of chronically ill patients: The influence of complications on the final goal. Southern Medical Journal 51:605–609. 1958).

The Physical Self-Maintenance Scale (Lawton, M.P., and Brody, E. Assessment of older people: Self-maintaining and instrumental activities of daily living. Gerontologist 9:179–186, 1969).

A Rapid Disability Rating Scale (Linn, M.W., and Linn, B.S. The Rapid Disability Rating Scale-2. Journal of the American Geriatrics Society 30:378–382, 1982).

Stanford Health Assessment Questionnaire (Fries, J.F., Spitz, P.W., and Young, D.Y. The dimensions of health outcomes: The Health Assessment Questionnaire, disability and pain scales. Journal of Rheumatology 9:789–793, 1982).

Functional Independence Measure (Hamilton, B.B., Granger, C.V., Sherwin, F.S., et al. A uniform national data system for rehabilitation outcomes: Analysis and measurement. Baltimore, Maryland: Paul H. Brookes, 1987).

The PULSES Profile (Moskowitz, E., and McCann, C.B. Classification of disability in the chronically ill and aging. Journal of Chronic Diseases 5:342–346, 1957).

The Kenny Self-Care Evaluation (Schoening, H.A., Anderegg, L., Bergstrom, D., et al. Numerical scoring of self-care status of patients. Archives of Physical and Medical Rehabilitation 46:689–697, 1965; Schoening, H.A., Iversen, I.A. Numerical scoring of self-care status: A study of the Kenny Self-Care Evaluation. Archives of Physical and Medical Rehabilitation 49:221–229, 1968).

The Medical Outcomes Study Physical Functioning Measure (Stewart, A., and Kamberg, C.J. Physical functioning measures. In Stewart, A.L., Ware, J.E. (eds). Measuring functioning and Well-Being: the Medical Outcomes Study Approach. Durham, North Carolina: Duke University Press, 1992).

The Functional Status Index (Jette, A.M, and Deniston, O.L. Inter-observer reliability of a functional status assessment instrument. Journal of Chronic Disease 31:573–580, 1978; Jette, A.M. Functional capacity evaluation: An empirical approach. Archives of Physical and Medical Rehabilitation 61:85–89, 1980).

The Functional Activities Questionnaire (Pfeffer, R.I., Kurosaki,f T.T., Harrach, C.H., et al. Measurement of functional activities in older adults in the community. Journal of Gerontology 37:323–329, 1982; Pfeffer, R.I., Kurosaki, T.T., Chance, J.M., et al. Use of the Mental

Suggested Citation:"Appendix F." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
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Function Index in older adults: Reliability, validity, and measurement of change over time. American Journal of Epidemiology 120:922–935, 1984).

The Lambeth Disability Screening Questionnaire (Patrick, D.L., Darby, S.C., Green, S., et al. Screening for disability in the inner city. Journal of Epidemiological Community Health 35:65–70, 1981).

ATTITUDES, RELIGIOUSNESS, AND SPIRITUALITY, compiled and reviewed by Joan Teno

Attitude Indices

Death Attitude Profile (Gesser, G., et al. Death Attitudes Across The Life Span: Development and Validation of The Death Attitude Profile," Omega, 18(2):113–128, 1987).

Life Attitude Profile: A 36-item multidimensional profile developed and tested in a college population and more recently in hospitalized patients and outpatients. This is an excellent instrument for assessing spiritual needs but may need to be modified for a terminally ill population.

McCanse Readiness for Death Instrument (McCanse, R. The McCanse Readiness for Death Instrument: A Reliable and Valid Measure for Hospice Care. The Hospice Journal 1995 10(1):15–26, 1995).

Templer's Death Anxiety Scale (Aday, R. Belief in Afterlife and Death Anxiety: Correlates and Comparisons. Omega, 18:67–75, 1984).

Purpose in Life Test (PIL) (Crumbaugh, J.C., and Maholick, L.T. Journal of Clinical Psychology, 20:200–207, 1964).

The Seeking of Noetic Goals Test (SONG) (Crumbaugh, J., Journal of Clinical Psychology, 33(3):900–907, 1977).

Religiousness

Religious Coping Scale (Pargament, K.I. et al. God Help Me: (I): Religious Coping Efforts as Predictors of The Outcomes To Significant Negative Life Events, American Journal of Community Psychology, 18(6):793–824, 1990).

Religious Orientation Measure (Allport, G.W. and Ross, M.J. Personal Religious Orientation and Prejudice. Journal of Personality and Social Psychology, 5(4):432–443, 1967).

Quest Scale (Batson, C.D., and Schoenrade, P.A. Measuring Religion as Quest: 1) Validity Concerns. Journal for the Scientific Study of Religion, 30(4):416–429, 1991; Batson, C.D., and Schoenrade, P.A., Mea-

Suggested Citation:"Appendix F." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
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Page 397 suring Religion as Quest: 2) Reliability Concerns. Journal for the Scientific Study of Religion, 30(4):430–447, 1991).

The Religiousness Scale (Strayhorn, J.M., et al. A Measure of Religiousness, and Its Relation To Parent and Child Mental Health Variables. Journal of Community Psychology, 18:34–43, 1990).

Religious Coping (Koenig, H., et al. Religious Coping and Depression Among Elderly, Hospitalized Medically Ill Men, American Journal of Psychiatry, 149(12):1693–1700. 1990).

Spirituality

Spiritual Well-Being Scale (Paloutzian, R.F., and Ellison, C.W. Loneliness, Spiritual Well-Being and Quality of Life, in Loneliness: A Sourcebook for Current Therapy A Wiley-Interscience Publ. Peplau and Perlman (ed). 1982).

Death Transcendence Scale (van de Creek, L., and Nye, C. Testing The Death Transcendence Scale. Journal for the Scientific Study of Religion, 32 (3):279–283, 1993; Hood, R., and Morris, R. Toward a Theory of Death Transcendence. Journal for the Scientific Study of Religion, 22(4):353–365, 1983).

Meaning in Life Scale (Warner, S.C., and Williams, J.I. The Meaning In Life Scale: Determining the Reliability and Validity of A Measure. Journal of Chrons' Disease, 40(6):503–512, 1987).

Herth Hope Index (van de Creek, L., et al. Where There's Life, There's Hope, and Where There Is Hope, There Is…Journal of Religion and Health , 33(1):51–59, 1994).

Index of Core Spiritual Experiences (INSPIRIT) (Kass, J. Journal for the Scientific Study of Religion, 30(2):203–211, 1991).

Spiritual Perspective Scale (Reed, P. Spirituality and Well-Being In Terminally Ill Hospitalized Adults. Research in Nursing and Health , 10:335–344, 1987).

QUALITY OF LIFE, compiled and reviewed by Anita Stewart

McGill Quality of Life Questionnaire (Cohen, S.R., and Mount, B.M. Quality of Life in Terminal Illness: Defining and Measuring Subjective Well-Being in The Dying. Journal of Palliative Care, 8(3):40–45, 1992).

Missoula-VITAS Quality of Life Index (Byock, I.R. Missoula-VITAS quality of life index [version 25S]. VITAS Healthcare Corp, 1995).

McMaster Health Index Questionnaire (Chambers, L.W., et al. The McMaster Health Index Questionnaire. Journal of Rheumatology, 9:780–784, 1982).

Suggested Citation:"Appendix F." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×

McAdam and Smith Index of Quality of Life (MacAdam, D.B., and Smith, M. An Initial Assessment of Suffering in Terminal Illness. Palliative Medicine, 1:37–47, 1987).

QL Index, HIRC-QL, Uniscale QL (Morris, J.N., et al. Last Days: A Study of The Quality of Life of Terminally Ill Cancer Patients. Journal of Chronic Diseases, 39(1):47–62, 1986).

Ferrans and Powers Quality of Life Index (Ferrans, C.E., and Powers, M. Quality of Life Index: Development and Psychometric Properties. Journal of Advances in Nursing Science, 8(1):15–24, 1985).

The Hospice Index (McMilan, S.C., and Mahon, M., Quality of Life Resources, 3:437–447, 1994).

SATISFACTION, compiled and reviewed by Joan Teno

Picker-Commonwealth Survey of Patient Centered Care (Cleary, P.D., Edgman-Levitan, S., Roberts, M., et al. Patients evaluate their hospital care: A national survey. Health Affairs, Winter 1991, 254–267).

Satisfaction Survey from Ware and Colleagues (Davies, A.R., Ware, J.E. GHAA's Consumer Satisfaction Survey and User's Manual. Group Health Association of America: Washington, D.C., 1988; Ware, J.E. Effects of acquiescent response set on patient satisfaction ratings. Medical Care 16:327, 1978; Tarlov, A.R., Ware, J.E., Greenfield, S., et al. The medical outcomes study: An application of methods for monitoring the results of medical care. Journal of American Medical Association, 262:925, 1989; McCusker, J. Development of scales to measure satisfaction and preferences regarding long-term and terminal care. Medical Care, 22:476–493, 1984; Kane, R.L., Bernstein, L., Wales, J., et.al. A randomized controlled trial of hospice care. Lancet, April:890–894, 1984; Baker, R., Teno, J.M., Wu, A., et al. Family satisfaction with end of life care. Manuscript in preparation. 1996; Westra, B.L., Cullen, L., Brody, D. et al. Development of the Home Care Client Satisfaction Instrument. Public Health Nursing, 12:393–399, 1995).

Patient Judgment System (Nelson, E.C., Hays, R.D., Larson, C., et al. The patient judgment system: reliability and validity. QRB, June:185–191, 1989).

FAMCARE (Kristjanson, L.J. Indicators of quality of palliative care from a family perspective. Journal of Palliative Care, 2:7–19, 1989; Kristjanson, L.J. Quality of terminal care: Salient indicators identified by families. Journal of Palliative Care, 5:21–30 1989; Kristjanson, L.J. Validity and reliability testing of the FAMCARE scale: Measuring family satisfaction with advanced cancer care. Social Science Medicine , 36:693–701, 1993).

Suggested Citation:"Appendix F." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×

Need Satisfaction Scale (Dawson, N.J. Need satisfaction in terminal care settings. Social Science Medicine, 32:83–87, 1991; Hampe, S. Needs of the grieving spouse in a hospital setting. Nurs Res, 24:113–120, 1975).

Unmet Needs of Patients with Cancer (Houts, P.S., Yasko, J.M., Harvey, H.A., et al. Unmet needs of persons with cancer in Pennsylvania during the period of terminal care. Cancer, 62:627–634, 1988).

National Hospice Organization Family Satisfaction Survey (National Hospice Organization. Family Satisfaction Survey. 1996).

Satisfaction of Families of Children with Cancer (Barbarin, O.A., Chesler, M.A. Relationships with the medical staff and aspects of satisfaction with care expressed by parents of children with cancer. Journal of Community Health, 9:302–313, 1984).

New York Satisfaction of Hospice Survey (Hannan, E.L., O'Donnell, J.F. An evaluation of hospices in the New York State hospice demonstration program. Inquiry, 21:338–348, 1984).

Satisfaction with Hospital-Based Home Care (Beck-Friis, B., Stang, P. The family in hospital-based home care with special reference to terminally ill cancer patients. Journal of Palliative Care, 9:5–13, 1993).

SUPPORT Surrogate Afterdeath Report on Dying (Baker, R., Teno, J.M., Wu, A., et al. Family satisfaction with end of life care. Manuscript in preparation. 1996).

Cancer Patient Satisfaction with Care (Wiggers, J.H., Donovan, K.O., Redman, S., and Sanson-Fisher, R.W. Cancer patient satisfaction with care. Cancer, 1:610–616, 1990).

Medical Interview Satisfaction Scale (Wolf, M.H., Putnam, S.M., James, S.A., et al. The medical interview satisfaction scale: Development of a scale to measure patient perceptions of physician behavior. Journal of Behavioral Medicine, 1:391, 1978).

Suggested Citation:"Appendix F." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
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When the end of life makes its inevitable appearance, people should be able to expect reliable, humane, and effective caregiving. Yet too many dying people suffer unnecessarily. While an "overtreated" dying is feared, untreated pain or emotional abandonment are equally frightening.

Approaching Death reflects a wide-ranging effort to understand what we know about care at the end of life, what we have yet to learn, and what we know but do not adequately apply. It seeks to build understanding of what constitutes good care for the dying and offers recommendations to decisionmakers that address specific barriers to achieving good care.

This volume offers a profile of when, where, and how Americans die. It examines the dimensions of caring at the end of life:

  • Determining diagnosis and prognosis and communicating these to patient and family.
  • Establishing clinical and personal goals.
  • Matching physical, psychological, spiritual, and practical care strategies to the patient's values and circumstances. Approaching Death considers the dying experience in hospitals, nursing homes, and other settings and the role of interdisciplinary teams and managed care. It offers perspectives on quality measurement and improvement, the role of practice guidelines, cost concerns, and legal issues such as assisted suicide. The book proposes how health professionals can become better prepared to care well for those who are dying and to understand that these are not patients for whom "nothing can be done."
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