Abstract | The activities that health-care professionals perform for the dying on a daily basis contribute in important ways to the experience of death, both for the patient, and those who care for them. Little is known however about the criteria that health-care professionals use when delineating a death as ‘good’ or ‘bad’. The case-study described identifies some of the criteria that health-care professionals working in one South London hospice used when evaluating the quality of deaths occurring in that unit, and demonstrates that hospice workers use a complex system of values when delineating a death as good or bad. Consistent views about the presence or absence of physical symptoms were found, but there was less agreement about the importance of criteria such as spiritual preparedness or acceptance of death. Control and autonomy also featured highly in descriptions of a good death, but these were regarded as problematic when exercised ‘to excess’ by clients and their families, a position at variance with traditional hospice philosophy. Similarly, there was little construct permanence between hypothetical and literal cases of a ‘good’ and ‘bad’ death, which suggests that the criteria which some hospice workers’ use are more subjective than the literature suggests. |
---|
References | Adams S (1993) A gendered history of the social management of death and the dying in Foleshill, Coventry during the inter-war years. In: Clark D (ed) The Sociology of Death. Oxford: Blackwell: 149-168. Albery N, Elliot G, and Elliot J (eds) (1993) The Natural Death Handbook. London: Virgin. Allport F H (1924) Social Psychology. Boston: Houghton-Mifflin. Aranda S (1999) Global Perspectives on Palliative Care. Cancer Nursing 22(1):33-39. Aries P (1981) The Hour of Our Death. London: Allen Lane. Aries P (1974) Western Attitudes Toward Death: From the middle ages to the present. Baltimore: Johns Hopkins University Press. Barriball K and While A (1994) Collecting data using a semi-structured interview: a discussion paper. Journal of Advanced Nursing 19(2): 328-335. Bauman Z (1992) Mortality, Immortality and Other Life Strategies. Cambridge: Polity Press. Beier L M (1989) The good death in seventeenth century Great Britain. In: Houlbrooke (ed) Death, Ritual and Bereavement. London: Routledge. 43-61. Benoliel J Q (1977) Anticipatory Grief in Physicians and Nurses. In: Feifel H. New Meanings of Death. New York: McGraw Hill: 255-269 Bergen A and While A (2000) A case for case studies: exploring the use of case study design in community nursing research. Journal of Advanced Nursing 31(4): 926-934. Bloch M and Parry J (1982) Death and the Regeneration of Life. Cambridge: Cambridge University Press. Blumer H (1969) Symbolic Interactionalism. Englewood Cliffs: Prentice Hall. Bradbury M (1999) Representations of Death: A Social Psychological Perspective. London: Routledge. Bradbury M (1996) Representations of ‘good’ and ‘bad’ death among death-workers and the bereaved. In: Howarth G and Jupp P (eds) Contemporary Issues in the Sociology of Death, Dying and Disposal. London: Macmillan. 84-95. Bradbury M (1993) Contemporary representations of ‘good’ and ‘bad’ death. In: Dickenson D and Johnson M (eds) Death, Dying and Bereavement. London: Sage: 68-71. Buckley M (1998) Death Rights: Health service commissioner questions whether dying people and those close to them receive the care they deserve. Nursing Times 94(25): 26-32. Byock I (2000) Completing the continuum of cancer care: integrating life-prologation and palliation. Cancer Journal 50(2): 68-69. Byock I (1997) Dying Well: Peace and Possibilities at the End of Life. New York: Riverhead Books. Cohen S R, Bultz B D, Clarke J, Kuhl D R, Pulson M J, Baldwin M K and Mount B (1997) Well-being at the end of life: Part 1. A research agenda for psychosocial and spiritual aspects of care from the patient’s perspective. Cancer Prevention and Control 1(5): 334-342. Copp G (1998) A review of current theories of death and dying. Journal of Advanced Nursing 28(2) 382-390. Copp G (1997) Patients’ and nurses’ constructions of death and dying in a hospice setting. Journal of Cancer Nursing 1(1) 2-13. De Raeve L (1992) Ethical Issues in palliative nursing research. A question of kind? Proceedings of the Seventh International Cancer Nursing Conference, Vienna. Oxford: Rapid Communications. Denzin N K (1989) The Research Act: a Theoretical Introduction to Sociological Methods. 3rd Edition. Englewood Cliffs: Prentice Hall. Denzin N K (1970) The Research Act in Sociology. 1st Edition. London: Butterworth. Elias N (1984) The Loneliness of Dying. Oxford: Blackwell Farr R M (1996) The Roots of Modern Social Psychology (1872-1954) Oxford: Blackwell. Feifel (1989) Grief and Bereavement: overview and perspective. Bereavement Care 7(1): 2-4. Field M J and Cassell C K (1997) Approaching Death: Improving Care at the End of Life. Washington DC: National Academy Press. Field D and James N (1993) Where and How People Die. In Clark D (ed) The Sociology of Death. Oxford: Blackwell:198-217. Field D, Ahmedzai, S, and Biswas B (1992) Care and information received by lay carers of terminally ill patients in a Leicestershire Hospice. Palliative Medicine 6(3): 51-59. Field D (1984) Nursing the Dying. London: Tavistock. Flaming D (2000) Improve Care and Comfort: Use the Label ‘Dying’. Journal of Palliative Care 16(2): 30-36. Fulton R and Fulton J (1971) A Psychological Aspect of Terminal Care: Anticipatory Grief. Omega 2:91-100. Gavrin J and Chapman C R (1995) Clinical Management of Dying Patients. Western Journal of Medicine. 163(3): 268-277. Germain C P (1980) Nursing the Dying: implications of Kubler-Ross’ staging theory. In Fox R (ed) The Social Meaning of Death (special issue) Annals of the American Academy of Political and Social Science. Vol. 447. Glaser B and Strauss A (1968) Time for Dying. Chicago: Aldine. Glaser B and Strauss A (1965) Awareness of Dying. Chicago: Aldine Goffman E (1961) Asylums: Essays on the Social Situation of Mental Patients and Other Inmates. Harmondsworth: Penguin. Gorer G (1965) Death, Grief and Mourning in Contemporary Britain. London: Cresset Guba E G and Lincoln Y S (1989) Fourth Generation Evaluation. Newbury Park: Sage. Gulland, A (1998) Nurses under fire from the ombudsman: Attitudes to dying patients leave a lot to be desired. Nursing Times 93(50): 17 Hammersley M (1995) Theory and evidence in qualitative research. Quality and Quantity 29: 55-66. Hardy J, Edmonds P, Turner R, Rees E and Ahern R (1999) The use of the Rotterdam Symptom Checklist in palliative care. Journal of Pain and Symptom Management 18(2): 79-84. Harré R (1984) Some reflections on the concept of ‘social representations’. Social Research 51:927-938. Harrison M I (1987) Diagnosing organizations. Newbury Park: Sage. Hearn J and Higginson I (1998) Do specialist palliative care teams improve outcomes for cancer patients? A systematic literature review. Palliative Medicine 12(5): 317-332. Hearn J and Higginson I (1997) Outcome measures in palliative care for advanced cancer patients: a review. Journal of Public Health Medicine 19(2): 193-199. Herzlich C (1973) Health and Illness: a Social Psychological Analysis. London: Academic Press. Higginson I, Wade A, and McCarthy M (1990) Palliative Care: views of patients and their families. British Medical Journal 301: 227-281. Higginson I and McCarthy M (1989) Evaluation of Palliative Care: steps to quality assurance? Palliative Medicine 3: 267-274 Hockey J (1996) The view from the west: reading the anthropology of non-western death ritual. In: Howarth G and Jupp P (eds) Contemporary Issues in the Sociology of Death, Dying and Disposal. London: Macmillan: 3-16. Hockley, J M (1988) Survey of distressing symptoms in dying patients and their families in hospital and the response to a symptom control team. British Journal of Medicine 269: 1715-1717. Humphrey D (1991) The Final Exit: The Practicalities of Self-Deliverance and Assisted Suicide for the Dying. Eugene, Oregon: Hemlock Society. Illich I (1976) Limits to Medicine. London: Marion Boyars James N and Field D (1992) The Routinization of Hospice: Charisma and Bureaucratization. Social Science and Medicine 34: 1363-1375. Jennings B (1996) Ethical Challenges of Hospice. In: A Good Dying: Shaping Health Care for the Last Months of Life. Briefing book for symposium sponsored by The George Washington University Centre to Improve Care of the Dying and The Corcoran Gallery of Art. April 30, 1996. Johnson B and Plant H (1996) Collecting Data from People with Cancer and their Families: What are the Implications? In: De Raeve L (ed) Nursing Research: An ethical and legal approach. London: Balliere Tindall. Kalish R (1977) Death and Ethnicity: A Psychocultural Study. Los Angeles: University of Southern California Press. Kastenbaum R (1977) Death, Society and Human Experience. St. Louis: CV Mosby. Kastenbaum R (1972) The Psychology of Death. New York: Springer Verlag. Katz J and Siddell M (1994) Easeful Death: caring for dying and bereaved people. London: Hodder and Stoughton Educational. Kearl M C (1989) Endings: A Sociology of Death and Dying. Oxford: Oxford University Press. Kellehear A (1990) Dying of Cancer: the final years of life. Chur: Harwood Academic. Kelly D, Ross S, Gray B, and Smith P (2000) Death, dying and emotional labour: problematic dimensions of the bone marrow transplant nursing role? Journal of Advanced Nursing 32(4) 952-960. Krueger R A (1994) Focus Groups: A Practical Guide for Applied Research. 2nd edition. London: Sage Publications Ltd. Kubler-Ross E (1991) On Life After Death. Berkeley: Celestial Arts. Kubler-Ross E (1975) Death: the final stage of growth. Englewood Cliffs: Prentice Hall. Kvale S (1996) Focus Groups. An Introduction to Qualitative Research Interviewing. London: Sage. Lev E L and McCorkle R (1998) Loss, grief and bereavement in family members of cancer patients. Seminars in Oncology Nursing 14(2): 145-151. Lichter I (1991) Some Psychological Causes of Distress in the Terminally Ill. Palliative Medicine 5: 138-146. Lindemann E (1944) Symptomatology and management of acute grief. American Journal of Psychiatry 101:141-148. Littlewood J (1992) Aspects of Grief: Bereavement in adult Life. London: Routledge. Lofland L H (1985) The Social Shaping of Emotion: The case of grief. Symbolic Interaction 8(2): 171-190 Lofland J and Lofland L (1984) Analyzing Social Settings: A guide to qualitative observation and analysis. Belmont: Wadsworth Publishing Company Ltd. Mamo, L (1999) Death and dying: confluences of emotion and awareness. Sociology of Health and Illness 21(1): 13-36. Marková I (1987) Paradigms, Thought and Language. Chichester: Whiley. McNamara B, Waddell C, and Colvin M (1995) Threats to the good death: the cultural context of stress and coping among hospice nurses. Oxford: Basil Blackwell. McNamara B, Waddell, C and Colvin M (1994) The Institutionalisation of the Good Death. Social Science and Medicine. 39(11): 1501-1508. Mead G (1934) Mind, Self and Society: from the Standpoint of a Social Behaviourist. In: Morris C W (ed) Chicago: Chicago University Press. 56-79. Metcalf P and Huntingdon R (1991) Celebrations of Death: The Anthropology of Mortuary Ritual. Cambridge: Cambridge University Press. Miles M and Huberman A (1984) Qualitative Data Analysis: an Expanded Sourcebook. Thousand Oaks: Sage. Moskovici S (1993) The Invention of Society. Psychological Explanations for Social Phenomena. Translation by Halls W D Cambridge: Polity Press. Moskovici S (1985) Comment on Potter and Litton. British Journal of Social Psychology 24: 91-92. Moskovici S (1976) La Psychanalyse: son Image et son Public. 2nd Edition. Paris: Presses Universitaires de France. Moskovici S (1973) Preface to C. Herzlich, Health and Illness: a Social Psychological Analysis. London: Academic Press. Murray-Parkes C (1990) Risk Factors in Bereavement: implications for the treatment and prevention of pathologic grief. Psychiatric Annals 20(6): 308-13. Murray-Parkes C (1988) Bereavement as a psychosocial transition: processes of adaptation to change. Journal of Social Issues 44(3): 53-65. National Health Service Executive (2000) Private Communication: Invitation to Tender for Evaluation of Services for the Care of the Dying. July, 2000. Poirier S and Ayres L (1997) Endings, Secrets and Silences: Over-reading in Narrative Inquiry. Research in Nursing and Health 20: 551-557. Polit D and Hungler B (1993) Nursing Research: Strategies for a natural sociology. Philadelphia: JB Lippincott. Prager K (1987) What? Physicians won’t treat AIDS? New York Times, October 23rd p.25. Purkhardt S C (1991) Social representations and social psychology: a theoretical critique with reference to the psychology of groups 1960’s - 1980’s. Unpublished PhD Thesis. University of London. Redding R. (1980) Doctors, Dyscommunication and Death. Death Education 3: 371-385. Redfern S J and Norman I J (1994) Validity though triangulation. Nurse Researcher 2: 41-56. Rogers A, Karlsen, S, and Addington-Hall J (2000) ‘All the services were excellent. It was when the human element comes in that things go wrong’: dissatisfaction with hospital care in the last year of life. Journal of Advanced Nursing 31(4): 768-774. Richardson R (1988) Death, Dissection and the Destitute. London: Penguin. Saunders C (1990) Beyond the Horizon: a search for meaning in suffering. London: Darton, Longman and Todd. Saunders C (1988) Spiritual Pain. Hospital Chaplain. March 1988. Saunders C (1970) The Moment of Truth: care of the dying person. In Person L (ed) Death and Dying. Cleveland: The Press of Case Western Reserve University. Saunders C (1965) The Last Stages of Life. American Journal of Nursing 65:1-3 Seale C (1999) The Quality of Qualitative Research. London: Sage Seale C and Addington Hall J (1994) Euthanasia: why people want to die earlier. Social Science and Medicine 5:12-19. Sorrell J and Redmond G (1995) Interviews in qualitative nursing research: differing approaches for ethnographic and phenomenological studies. Journal of Advanced Nursing 21(6): 1117-1122. Sudnow (1970) Passing On: The Social Organisation of Dying. Englewood Cliffs: Prentice Hall. Sweeting H and Gilhooly M (1991) Doctor Am I Dead? A review of social death in modern societies. Omega 24(4):251-269. Sykes G (1965) The Society of Captives. New York: Athaneum. Taylor B (1993b) What does a Good Death of people in their care mean to hospice nurses? Unpublished Paper Presented to the National Hospice and Palliative Care Conference, Melbourne 1993. In: McNamara et al (1994) ibid. Van Gennep A (1960) The Rites of Passage. Chicago: University of Chicago Press. Wallston K A, Burger C, Smith R A and Baugher R J (1988) Comparing the Quality of Death for Hospice and Non-Hospice Cancer patients. Medical Care 26(2):177-182. Walter T (1994) The Revival of Death. London: Routledge. Weisman A D (1988) Appropriate Death and the Hospice Program. The Hospice Journal 4(1): 65-77. Weisman A D (1973) Coping with Untimely death. Psychiatry 36: 366-378. Weisman A D (1972) On Death and Denying. New York: Behavioural Publications. White L (1977) Death and the Physician: Mortuis vivos Docent. In: Feifel H (ed) Grief and Bereavement. Englewood Cliffs: Sage. 38-59. Yin R K (1994) Case Study research: Design and Methods. 2nd Edition. London: Sage. Young M and Cullen L A (1996) A Good Death: Conversations with East Londoners. New York: Routledge. Zuckerman C and Wollner (1999) End of life care and decision making: how far have we come, how far have we to go? Hospice Journal 14(3):85-107. |
---|