End of life care definitions and triggers for assessment: a summary and discussion of the literature
O'Connor, S. 2016. End of life care definitions and triggers for assessment: a summary and discussion of the literature. Canterbury Canterbury Christ Church University.
This report was commissioned by the NHS National Programme Director for End of Life Care in 2008 to inform the development of national policy regarding end of life care prior to the controversy surrounding misuse of the Liverpool Care Pathway (Ellershaw and Wilkinson, 2003) and its subsequent discontinuation from use in clinical practice. It was situated on the Department of Health’s webpages for end of life care until taken down following internal reorganisation of the website and the redistribution of responsibility for end of life care within the National Health Service some years later. The subject of end of life prognostication was as sensitive then as it is now however, although in many respects, it is much more visible as a subject for social, political and academic debate these days, not least because of the many examples contained within subsequent reviews of the Liverpool Care Pathway’s misuse by clinicians or practitioners who failed in some instances to fully understand the importance of ‘diagnosing dying’ before putting individuals onto the care pathway, and their failure to heed the very first rule of its use, namely; that such decisions should always be discussed with those who were dying and their close family members before putting them on the pathway wherever possible.
The majority of clinical interventions contained within the Liverpool Care Pathway for the Dying were, and continue to be clinically sound when used appropriately; although the evidence base for some of them remains sparse though it is an area of practice which continues to be under-researched even to this day. The main problem outlined in the wake of the Liverpool Care Pathway controversy lay in the inability of clinicians to prognosticate accurately which, when combined with a natural aversion to having difficult conversations with patients and family members, and the lack of investment or interest in palliative and end of life education led to inevitable mistakes occurring. I still recall the evident satisfaction of one manager who called to explain why she was withdrawing her staff from an end of life programme I was running because the ‘LCP’ was being introduced into her areas and she thought that was all that was needed to provide good end of life care. We clearly know better now.
The review undertaken was neither funded nor intended to be a comprehensive systematic review of the literature, but rather a twenty-page summary and starting point for discussion about the way in which we recognise that someone is dying and how we could or should respond to that fact. The need for discussion is as pertinent today as it was then, not least because of the fact that more patients and family members expect us to have answers to these questions, though clearly this is still a work in progress for many of us and will continue to be until we fully understand the benefits of having such conversations with them.
|Keywords||End of life care; palliative care; death; dying; terminal; definitions; triggers; assessment tools; recognising dying; diagnosing dying; end of life policy; clinical practice|
|Publisher||Canterbury Christ Church University|
|Place of publication||Canterbury|
|31 Jul 2016|
|Publication process dates|
|Deposited||13 Oct 2016|
|Funder||NHS National Director for End of Life Care|
Ahmedzai, S., Costa, A., Blengini, C., Bosch, A., Sanz-Ortiz, J., Ventafridda, V. and Verhagen, S. (2004) A new international framework for palliative care. European Journal of Cancer Care, 40: 2192-2200.
Asch, D., Shea, J., Jedrziewski, M. and Bosk, C. (1997) The limits of suffering: Critical nurses' views of hospital care at the end of life. Social Science & Medicine, 11: 1661-1668.
Becker, G., Sarhatlic, R., Olschewski, M., Xander, C., Momm, F. and Blum, H. E. (2007) End-of-Life Care in Hospital: Current Practice and Potentials for Improvement. Journal of Pain and Symptom Management, 33: 711-719.
Boyce, A., McHugh, M. and Lyon, P. (2003) Proactive palliative care choices for haematology day unit patients. Int J Palliat Nurs, 9: 544-50.
British Medical Association (1995) Advance Statements About Medical Treatment. London: BMA.
Brody, H. and Hunt, L. (2005) Moving beyond cultural stereotypes in end-of-life decision making. American Family Physician, 71: 515-522.
Brook-Hamilton, J. (2000) Chapter 8. The ethics of end of life care. In: Poor, B. and Poirrier, G. (Eds) End of Life Nursing Care. Sudbury, MA: Jones and Bartlett, pp. 73-104.
Carr, D. and Khodyakov, D. (2007) End-of-life health care planning among young-old adults: an assessment of psychosocial influences. Journal of Gerontology Series B Psychological Sciences and Social Sciences, 62: S135-141.
Cella, D. (1995) Measuring quality of life in palliative care. Seminars in Oncology, 22: 73- 81.
Cherny, N., R, C., P, K. and and Members of the ESMO Taskforce on Supportive and Palliative Care (2003) ESMO takes a stand on supportive and palliative care. Annals of Oncology, 14: 1335-1337.
Christakis, N. and Iwashyna, T. (1998) Attitude of self-reported practice regarding prognostication in a national sample of internists. Archives of Internal Medicine, 158: 2389-2395.
Christakis, N. and Lamont, E. (2000) Extent and determinants of error in doctor’s prognosis in terminally ill patients: prospective cohort study. British Medical Journal, 320: 469-472.
Comoni-Huntley, J., Blazer, D. G., Lafferty, M., Everett, D., Brock, D. and Farmer, M. (1990) Established Populations for Epidemiologic Studies of the Elderly. Volume II. Research Data Book. Bethesda, MD: National Institutes for Health.
Corbin, J. and Strauss, A. (1992) A nursing model for chronic illness management based upon the trajectory framework. In: Woog, P. (Ed) The Chronic Illness Trajectory Framework. New York: Springer.
Cumbie, S., Conley, V. and Burman, M. (2004) Advanced practice nursing model for comprehensive care with chronic illness: Model for promoting process engagement. Advances in Nursing Science, 27: 70-80.
Davies, E. and Higginson, I. (2004) Better Palliative Care for Older People. Copenhagen: World Health Organisation.
Davison, S. N. and Torgunrud, C. (2007) The Creation of an Advance Care Planning Process for Patients with ESRD. American Journal of Kidney Diseases, 49: 27-36.
de Jonge, P., Hoogervorst, E., Huyse, F. and Polman, C. (2004) INTERMED: A measure of biopsychosocial case complexity: one-year stability in Multiple Sclerosis patients. General Hospital Psychiatry, 26: 147-152.
Della Santina, C. and Bernstein, R. H. (2004) Whole-patient assessment, goal planning, and inflection points: their role in achieving quality end-of-life care. Clinics in Geriatric Medicine, 20: 595-620.
Elkington, H., White, P., Addington-Hall, J., Higgs, R. and Pettinari, C. (2004) The last year of life of COPD: a qualitative study of symptoms and services. Respiratory Medicine, 98: 439-445.
Ellershaw, J. and Wilkinson, S. (2003) Care of the Dying: A Pathway to Excellence. Oxford: Oxford University Press.
Elliott, T., Renier, C. and Palcher, J. (2007) The Prognostic Value of Measuring Health- Related Quality of Life in Hospice Patients. Journal of Palliative Medicine, 10: 696-704.
Eng, C. (2002) Future consideration for improving end-of-life care for older persons: Program of All-Inclusive Care for the Elderly (PACE). Journal of Palliative Medicine, 5: 305-309.
Eve, A. and Higginson, I. (2000) Minimum dataset activity for hospice and hospital palliative care services in the UK 1997/98. Palliative Medicine 14: 395-404.
Ferrell, B. and Coyle, N. (2001) Textbook of Palliative Nursing. Oxford: Oxford University Press.
Field, M. J. and Cassel, C. (1997) Approaching Death: Improving Care at the End of Life. Washington, DC: National Academy Press.
Fins, J., Miller, F., Acres, C., Bacchetta, M., Huzzard, L. and Rapkin, B. (1999) End-of-Life Decision-Making in the Hospital: Current Practice and Future Prospects. Journal of Pain and Symptom Management, 17: 6-15.
Forest, P. (2004) Being there: The essence of end-of-life nursing care. Urologic Nursing, 24: 270-280.
Fox, E., Landrum-McNiff, K., Zhong, Z., Dawson, N., Wu, A. and Lynn, J. (1999) Evaluation of prognostic criteria for determining hospice eligibility in patients with advanced lung, heart, or liver disease. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. Journal of the American Medical Association, 282: 1638-1645.
Froggatt, K. and Payne, S. (2006) A survey of end-of-life care in care homes: issues of definition and practice. Health & Social Care in the Community, 14: 341-348.
Gabbay, B., Matsumura, S., Etzioni, S., Asch, S., Rosenfeld, K., Shiojiri, T., Balingit, P. and Lorenz, K. (2005) Negotiating end-of-life decision making: a comparison of Japanese and U.S. residents' approaches. Academic Medicine: Journal of the Association of American Medical Colleges, 80: 617-621.
Garvin, J. and Chapman, C. (1995) Clinical management of dying patients. Western Journal of Medicine, 163: 268-277.
General Medical Council (2001) Withholding and Withdrawing Life Prolonging Treatments: Good Practice in Decision-making. Guidance from the Standards Committee of the General Medical Council. London: General Medical Council.
Glaser, B. and Strauss, A. (1965) Temporal aspects of dying as a non-scheduled status passage. American Journal of Sociology, 71: 48-59.
Glaser, B. and Strauss, A. (1968) Time for Dying. Chicago: Aldine.
Gore, J., Brophy, C. and Greenstone, M. (2000) How well do we care for patients with end stage chronic obstructive pulmonary disease (COPD)? A comparison of palliative care and quality of life in COPD and lung cancer. Thorax, 55: 1000-1006
Gott, M., Small, N., Barnes, S., Payne, S. and Seamark, D. (2008) Older people's views of a good death in heart failure: implications for palliative care provision. Social Science & Medicine, 67: 1113-1121.
Griffin, J., Nelson, J., Koch, K., Niell, H., Ackerman, T., Thompson, M. and Hammond Cole, F. (2003) End-of-Life Care in Patients with Lung Cancer. Chest, 123: 312S-331S.
Hawes, C., Morris, J., Phillips, C., Mor, V., Fries, B. and Nonemaker, S. (1995) Reliability estimates for the minimum data set for nursing home assessment and care screening (MDS). Gerontologist, 35: 172-178.
Hawes, C., Phillips, C., Mor, V., Fries, B. E. and Morris, J. (1992) MDS data set should be used for research. Gerontologist, 32: 563-564.
Hewitt, M. and Simone, J. (1999) Ensuring Quality Cancer Care. Washington DC: National Academies Press.
Higginson, I. and McCarthy, M. (1993) Validity of the support team assessment schedules: do staffs’ ratings reflect those made by patients or their families? Palliative Medicine, 7: 219-228.
Higginson, I., Wade, A. and McCarthy, M. (1992) Effectiveness of two palliative support teams. Journal of Public Health, 14: 50-56.
Hoffman, J., Wenger, N., Davis, R., Teno, J., Connors, A. F., Desbiens, N., Lynn, J. and R, P. (1997) Patient preferences for communication with physicians about end of life decisions. Annals of Internal Medicine, 127: 1-12.
Holley, J., Carmody, S., Moss, A., Sullivan, A., Cohen, L., Block, S. and Arnold, R. (2003) The Need for End-of-Life Care Training in Nephrology: National Survey Results of Nephrology Fellows. American Journal of Kidney Diseases, 42: 813-820.
Hov, R., Hedelin, B. and Athlin, E. (2007) Good nursing care to ICU patients on the edge of life. Intensive and Critical Care Nursing, 23: 331-341.
Jacobs, L. G., Bonuck, K. and Burton, W. (2002) Can "Palliative Care Reports" Improve End-of-Life Care for Hospitalized Patients? Journal of Pain and Symptom Management, 24: 299-311.
Jakobsen, E., Bergh, I., Gaston-Johansson, F., Stolt, C. and Öhlen, J. (2006) The Turning Point: Clinical Identification of Dying and Reorientation of Care. Journal of Palliative Medicine, 9: 1348-1358.
Kane, R. (2003) The interface of long-term care and other components of health and social services systems in North America. In: Brodsky, J., Habib, J. and Hirschfield, M. (Eds) Key Policy Issues in Long Term Care. Geneva: World Health Organisation Collaborating Centre for Research in Health in the Elderly, pp. 63-90.
Kaufman, S. (2000) Senescence, decline, and the quest for a good death: Contemporary dilemmas and historical antecedents. Journal of Aging Studies, 14: 1-23.
Kellehear, A. (2008) Dying as a social relationship: A sociological review of debates on the determination of death. Social Science & Medicine, 66: 1533-1544.
Kemp, C. (2005) Cultural issues in palliative care. Seminars in Oncology Nursing, 21: 44- 52.
Knaus, W., Harrell, F., Lynn, J., Goldman, L., Phillips, R. and Connors, A. (1995) The SUPPORT prognostic model. Objective estimates of survival for seriously ill hospitalized adults. Study to understand prognoses and preferences for outcomes and risks of treatments. Annals of Internal Medicine, 122: 191-203.
Kralik, D. (2002) The quest for ordinariness: transition experienced by midlife women living with chronic illness. Journal of Advanced Nursing 39: 146-154.
Kutner, J. S., Bryant, L. L., Beaty, B. L. and Fairclough, D. L. (2006) Symptom Distress and Quality-of-Life Assessment at the End of Life: The Role of Proxy Response. Journal of Pain and Symptom Management, 32: 300-310.
Latour, C., Huyse, F., de Vos, R. and Stalman, W. (2007) A method to provide integrated care for complex medically ill patients: the INTERMED. Nursing and Health Sciences, 9: 150-157.
Lawton, M., Moss, M. and Glicksman, A. (1990) The quality of the last year of life of older persons. The Milbank Quarterly, 68: 1-28.
Leland, J. (2000) Death and Dying: Management of patients with end-stage disease. Clinics in Geriatric Medicine, 16: 875-893.
Lorenz, K. A., Lynn, J., Dy, S. M., Shugarman, L. R., Wilkinson, A., Mularski, R. A., Morton, S. C., Hughes, R. G., Hilton, L. K., Maglione, M., Rhodes, S. L., Rolon, C., Sun, V. C. and Shekelle, P. G. (2008) Evidence for Improving Palliative Care at the End of Life: A Systematic Review. Annals of Internal Medicine, 148: 147-W28.
Lorenz, K. A., Shugarman, L. R., Lynn, J., Arnold, R. M. and Liao, S. (2006) Health Care Policy Issues in End-of-Life Care. Journal of Palliative Medicine, 9: 731-748.
Lunney, J., Lynn, J. and Hogan, C. (2002) Profiles of older Medicare decedents. Journal of the American Geriatric Society, 50: 1108-1112.
Lynn, J. (2000) Finding the Key to Reform in End-of-Life Care. Journal of Pain and Symptom Management, 19: 165-167.
Lynn, J. and Adamson, D. (2003) Living ell at the end of life. Adapting health care to serious chronic illness in old age. Santa Monica, CA: Rand.
Lynn, J. and Goldstein, N. E. (2003) Advance Care Planning for Fatal Chronic Illness: Avoiding Commonplace Errors and Unwarranted Suffering. Annals of Internal Medicine, 138: 812.
Lynn, J., Nolan, K., Kabcenell, A., Weissman, D., Milne, C. and Berwick, D. M. (2002) Reforming Care for Persons Near the End of Life: The Promise of Quality Improvement. Annals of Internal Medicine, 137: 117.
Lynn, J., Teno, J., Phillips, R., Wu, A., Desbiens, N., Harrold, J., Claessens, M., Wenger, N., Kreling, B. and Connors, A. (1997) Perceptions by Family Members of the Dying Experience of Older and Seriously Ill Patients. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). Annals of Internal Medicine, 126: 97-106.
Mazzocato, C., Stiefel, F., de Jonge, P., Levorato, A., Ducret, S. and Huyse, F. (2000) Comprehensive Assessment of Patients in Palliative Care: A Descriptive Study Utilizing the INTERMED. Journal of Pain and Symptom Management, 19: 83-90.
McCormick, T. and Conley, B. (1995) Patients' perspectives on dying and on the care of dying patients. Western Journal of Medicine, 163: 236-43.
McGrath, P. and Holewa, H. (2006) Missed opportunities: nursing insights on end-of-life care for haematology patients. International Journal of Nursing Practice, 12: 295-301.
McGrath, P. D. and Holewa, H. A. (2007) Description of an Australian model for end-of-life care in patients with hematologic malignancies. Oncology Nursing Forum, 34: 79-85.
McPherson, C. J. and Addington-Hall, J. M. (2003) Judging the quality of care at the end of life: can proxies provide reliable information? Social Science & Medicine, 56: 95-109.
Morris, J. N., Hawes, C., Fries, B. E., Phillips, C. D., Mor, V., Katz, S., Murphy, K., Drugovich, M. L. and Friedlob, A. S. (1990) Designing the national resident assessment instrument for nursing homes. The Gerontologist, 30: 293-307.
Moss, A. H., Ganjoo, J., Sharma, S., Gansor, J., Senft, S., Weaner, B., Dalton, C., MacKay, K., Pellegrino, B., Anantharaman, P. and Schmidt, R. (2008) Utility of the "Surprise" Question to Identify Dialysis Patients with High Mortality. Clinical Journal of the American Society of Nephrology, 3: 1379-1384.
Mularski, R. A., Dy, S. M., Shugarman, L. R., Wilkinson, A. M., Lynn, J., Shekelle, P. G., Morton, S. C., Sun, V. C., Hughes, R. G., Hilton, L. K., Maglione, M., Rhodes, S. L., Rolon, C. and Lorenz, K. A. (2007) A Systematic Review of Measures of End-of-Life Care and Its Outcomes. Health Services Research, 42: 1848-1870.
Murray, S., Boyd, K. and Sheikh, A. (2005) Palliative care in chronic illness. We need to move from prognostic paralysis to active total care. British Medical Journal, 330: 611-612.
Murray, S., Pinnock, H. and Sheikh, A. (2006) Palliative care for people with COPD: we need to meet the challenge. Primary Care Respiratory Journal, 15: 362-364.
Murray, S. A., Kendall, M., Grant, E., Boyd, K., Barclay, S. and Sheikh, A. (2007) Patterns of Social, Psychological, and Spiritual Decline Toward the End of Life in Lung Cancer and Heart Failure. Journal of Pain and Symptom Management, 34: 393-402.
Murtagh, F., Preston, M. and Higginson, I. (2004) Patterns of dying: palliative care for non- malignant disease. Clinical Medicine, 14: 39-44.
National Council for Palliative Care (2006) End of Life Care Strategy: The National Council for Palliative Care Submission. London: NCPC.
National Institute of Clinical Excellence (2004) Guidance on Cancer Services: Improving Supportive and Palliative Care for Adults with Cancer. London: NICE.
National Institutes of Health (2004) Statement on Improving End-of-Life Care. National Institutes of Health State-of-the-Science Conference: 6-8 December 2004.
Nikoletti, S., Porock, D., Kristjanson, L. J., Medigovich, K., Pedler, P. and Smith, M. (2000) Performance status assessment in home hospice patients using a modified form of the Karnofsky Performance Status scale. Journal of Palliative Medicine, 3: 301-311.
Nolan, M. T. and Mock, V. (2004) A conceptual framework for end-of-life care: A reconsideration of factors influencing the integrity of the human person. Journal of Professional Nursing, 20: 351-360.
Parker-Oliver, D., Porock, D. and Zweig, S. (2004) End-of-life care in US nursing homes: A review of the evidence. Journal of American Medical Directors Association, 5: 147-155.
Paterson, B. (2001) The shifting perspectives model of chronic illness. IMAGE: Journal of Nursing Scholarship, 33: 21-26.
Paterson, B. (2003) The Koala has claws: Applications of the shifting perspectives model in research of chronic illness. Qualitative Health Research, 13: 987-994.
Payne, S., Sheldon, F., Jarrett, N., Large, S., Smith, P., Davis, C. L. and et al. (2002) Differences in understanding of specialist palliative care amongst service providers and commissioners in South London. Palliative Medicine, 16: 395-402.
Phillips, C., Hawes, C., Mor, V., Fries, B. and Morris, J. (1996) Evaluation of the nursing home resident assessment instrument: Executive Summary. Report to Health Care Financing Administration by the Research Triangle Institute.
Porock, D. and Oliver, D. P. (2007) Recognizing dying by staff in long-term care. Journal of Hospice & Palliative Nursing, 9: 270-278.
Porock, D., Oliver, D. P., Zweig, S., Rantz, M., Mehr, D., Madsen, R. and Petroski, G. (2005) Predicting death in the nursing home: development and validation of the 6-month Minimum Data Set Mortality Risk Index. Journals of Gerontology Series A: Biological Sciences & Medical Sciences, 60A: 491-498.
Porock, D., Oliver, D. P., Zweig, S. C., Rantz, M. and Petroski, G. F. (2003) A profile of residents admitted to long-term care facilities for end-of-life care. Journal of the American Medical Directors Association, 4: 16-22.
Porock, D. and Parker-Oliver, D. (2007) Recognizing dying in nursing home residents. Journal of Hospice and Palliative Nursing, 9: 270-278.
Seymour, J., Gott, M., Bellamy, G., Ahmedzai, S. and Clark, D. (2004) Planning for the end of life: the views of older people about advance care statements. Social Science & Medicine, 59: 57-68.
Seymour, J., Witherspoon, R., Gott, M., Ross, H., Payne, S. and Owens, T. (2005) End-of- Life Care: Promoting Comfort, Choice and Well-Being for Older People. Bristol: Polity Press.
Shipman, C., Gysels, M., White, P., Worth, A., Murray, S., Barclay, S., Forrest, S., Shepherd, J., Dale, J., Dewar, S., Peters, M., White, S., Richardson, A., Lorenz, K., Koffman, J. and Higginson, I. (2008) Improving Generalist End of Life Care: National consultation with practitioners, commissioners, academics, and service user groups. British Medical Journal, 337: a1720
Steinhauser, K., Christakis, N., Clipp, E., McNeilly, M., McIntyre, L. and Tulsky, J. (2000) Factors Considered Important at the End of Life by Patients, Family, Physicians, and Other Care Providers. Journal of the American Medical Association, 284: 2476-2482.
Steinhauser, K. E., Christakis, N. A., Clipp, E. C., McNeilly, M., Grambow, S., Parker, J. and Tulsky, J. A. (2001) Preparing for the End of Life: Preferences of Patients, Families, Physicians, and Other Care Providers. Journal of Pain and Symptom Management, 22: 727-737.
Stuifbergen, A., Becker, H., Ingalsbe, K. and Sands, D. (1990) Perceptions of health among adults with disabilities. Health Values, 14: 18-26.
Teno, J. M., Casey, V. A., Welch, L. C. and Edgman-Levitan, S. (2001) Patient-Focused, Family-Centered End-of-Life Medical Care: Views of the Guidelines and Bereaved Family Members. Journal of Pain and Symptom Management, 22: 738-751.
van Gennep, A. (1965) The Rites of Passage. London: Routledge and Kegan Paul.
Wilson, D. M. (2002) The duration and degree of end-of-life dependency of home care clients and hospital inpatients. Applied Nursing Research, 15: 81-86.
Winter, L. and Parker, B. (2007) Current health and preferences for life-prolonging treatments: An application of prospect theory to end-of-life decision making. Social Science & Medicine, 65: 1695-1707.
Wolinsky, F., Stump, T., Callahan, C. and Johnson, R. (1996) Consistency and change in functional status among older adults over time. Journal of Aging and Health, 8: 155-182.
Zambrowski, C., Roser, L. and Moser, D. (2005) Chapter 41 End of life care in the acute heart failure patient. In: O'Connor, C., Stough, W., Gheorghiade, M. and Adams, K. (Eds) Managing Acute Decompensated Heart Failure. Chichester: Taylor Francis, pp. 569-603.
Zimmermann, C. (2007) Death denial: obstacle or instrument for palliative care? An analysis of clinical literature. Sociology of Health and Illness, 29: 297-314.
3views this month
0downloads this month