Advertisement

Challenges in End-of-Life Care

  • F. M. Rubulotta
  • L. Serra
  • A. Gullo

Abstract

It may seem rhetorical discussing an issue as universal and certain as human mortality. However, death is still the source of an enormous amount of ethical dilemmas and uncertainty in clinical decision-making regarding whether to withdraw and withhold care in terminal illnesses. Modern society is trying to approach and to standardize the dying process, while sometimes failing to recognize that it is an unpreventable and unavoidable phenomenon. Reliable and valid research on attitudes toward dying and death is surprisingly limited to academic debate and selected literature.

Keywords

Palliative Care Advance Directive Medical Intensive Care Unit Death Anxiety Terminal Patient 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

Preview

Unable to display preview. Download preview PDF.

Unable to display preview. Download preview PDF.

References

  1. 1.
    Reilly BM, Magnussen CR, Ross J, et al (1994) Can we talk? Inpatient discussions about advance directives in a community hospital. Attending physicians’ attitudes, their inpatients’ wishes, and reported experience. Arch Intern Med 24 154:2299–2308Google Scholar
  2. 2.
    McLeod GA, Saika G (1986) Patient attitudes to discussing life-sustaining treatment. Arch Intern Med 146:1613–1615PubMedCrossRefGoogle Scholar
  3. 3.
    Everhart MA, Pearlman RA (1990) Stability of patient preferences regarding life-sustaining treatments. Chest 97:159–164PubMedCrossRefGoogle Scholar
  4. 4.
    Curtis JR, Patrick DL, Caldwell ES, Collier AC (2000) Why don’t patients and physicians talk about end-of-life care? Barriers to communication for patients with acquired immunodeficiency syndrome and their primary care clinicians. Arch Intern Med 160:1690–1696PubMedCrossRefGoogle Scholar
  5. 5.
    Hallenbeck J, Goldstein M, Mebane E (1996) Cultural considerations of death and dying in the United States. Clin Geriatr Med 12:393–405PubMedGoogle Scholar
  6. 6.
    (1995) A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). JAMA 274:1591–1598Google Scholar
  7. 7.
    Field MJ, Cassel C (1997) Approaching death improving care at the end of life. National Academy Press. Washington DCGoogle Scholar
  8. 8.
    Levy MM (2004) Dying America. Crit Care Med 32:879–880PubMedGoogle Scholar
  9. 9.
    Van Brunt E (1991) Concerned patient. West J Med 155:88–89PubMedPubMedCentralGoogle Scholar
  10. 10.
    Omnibus Reconciliation Act 1990. Title.IV, Section 4206, Congressional Record 1263–64Google Scholar
  11. 11.
    Appelbaum PS, Lidz CW, Meisel A (1987) Informed consent. New York, OUP 12. McClam T (1980) Death anxiety before and after death education: negative results. Psychol. Rep 46:513–514Google Scholar
  12. 13.
    Durlak CM, Rose E, Bursuck WD (1994) Preparing high school students with learning disabilities for the transition to postsecondary education: teaching the skills of self-determination. J Learn Disabil 27:51–59PubMedCrossRefGoogle Scholar
  13. 14.
    Testa JA (1981) Group systematic desensitization and implosive therapy for death anxiety. Psychol Rep 48:376–378PubMedCrossRefGoogle Scholar
  14. 15.
    Gardner P, Rosenberg HM, Wilson RW (1996) Leading causes of death by age, sex, race, and Hispanic origin: United States, 1992. Vital Health Stat 20 29:1–94Google Scholar
  15. 16.
    Angus DC, Barnato AE et al ( 2004) Use of intensive care at the end of life in the United States: an epidemiologic study. Crit Care Med 32:638–643PubMedGoogle Scholar
  16. 17.
    Caralis PV, Davis B, Wright K, Marcial E (1993) The influence of ethnicity and race on attitudes toward advance directives, life-prolonging treatments and euthanasia. J Clin Ethics 4:155–165PubMedGoogle Scholar
  17. 18.
    De Vita MA, Grenvik A (2000) Forgoing life-sustaining therapy in Intensive Care. IV Edition. WC Shoemaker, PR Holbrook, A Granvik. Philadelphia, W B Saunders, Textbook of Critical Care Medicine Section XV: 2110–2116Google Scholar
  18. 19.
    Sager MA, Easterling DV, Kindig DA, Anderson OW (1989) Changes in the location of death after passage of Medicare’s prospective payment system. A national study. N Engl J Med 16 320:433–439CrossRefGoogle Scholar
  19. 20.
    Brock DB, Foley DJ, Salive ME (1996) Hospital and nursing home use in the last three months of life. J Aging Health 8:307–319PubMedCrossRefGoogle Scholar
  20. 21.
    Wallis CB, Davies HTO, Shearer AJ (1997) Why do patients die on general wards after discharge from intensive care units? Anaesthesia 52:9–14Google Scholar
  21. 22.
    Hillman KM, Bristow PJ, Chey T et al (2002) Duration of life-threatening antecedents prior to intensive care admission. Intensive Care Med 28:1629–1634PubMedCrossRefGoogle Scholar
  22. 23.
    Vigano A, Watanabe S, Bruera E (1994) Anorexia and cachexia in advanced cancer patients. Ann Acad Med Singapore 23:197–203Google Scholar
  23. 24.
    Voltz R, Akabayashi A, Reese C, Ohi G, Sass HM (1998) End-of-life decisions and advance directives in palliative care: a cross-cultural survey of patients and healthcare professionals. J Pain Symptom Manage 16:153–162PubMedCrossRefGoogle Scholar
  24. 25.
    Koenig BA, Gates-Williams J (1995) Understanding cultural difference in caring for dying patients. West J Med 163:244–249PubMedPubMedCentralGoogle Scholar
  25. 26.
    Prendergast TJ, Ciaessen MT, Luce JM (1998) A national survey of end-life care for critically ill patients. Am J Resp Crit Care Med 158:1163–1167PubMedGoogle Scholar
  26. 27.
    Klessig J (1992) Cross-cultural medicine a decade later: The effect of values and culture on life-support decisions. West J Med 157:316–322PubMedPubMedCentralGoogle Scholar
  27. 28.
    Knaus WA, Wagner DP, Zimmerman JE, Draper EA (1993) Variations in mortality and length of stay in intensive care units. Ann Intern Med 15 118:753–761CrossRefGoogle Scholar
  28. 29.
    Prendergast TJ, Luce JM (1997) Increasing incidence of withholding and withdrawal of life support from the critically ill. AJRCCM 155:15–20Google Scholar
  29. 30.
    Sprung CL, Eidelman LA, Pizov R (1996) Changes in forgoing life-sustaining treatments in the United States: Concern for the future. Mayo Clin Proc 71:512–516PubMedCrossRefGoogle Scholar
  30. 31.
    Vincent JL (1999) Forgoing life support in Western European intensive care units: The result of an ethical questionnaire. Crit Care Med 27:1626–1633PubMedGoogle Scholar
  31. 32.
    (1994) Society of Critical Care Medicine Ethics: Attitudes of critical care medicine professionals concerning distribution of intensive care recourses. Crit Care Med 22:358–362Google Scholar
  32. 33.
    Smedira NG, Evans BH, Grais LS et al (1990) Withholding and withdrawal of life support from the critically ill. N Engl J Med 322:309–315PubMedCrossRefGoogle Scholar
  33. 34.
    Zimmerman JE, Knaus WA, Sharpe SM et al (1986) The use and implications of do not resuscitate orders in intensive care units. JAMA 17 255:351–356CrossRefGoogle Scholar
  34. 35.
    Boles JM (2004) End-of-life care in the ICU professional society statements from european countries. Intensive Care Med (in press)Google Scholar
  35. 36.
    Carlet J, Thijs LG, Antonelli M et al (2004) Challenges in end-of-life care in the ICUStatement of the 5th International Consensus Conference in Critical Care: Brussels, Belgium, April 2003. Intensive Care Med 30:770–784PubMedCrossRefGoogle Scholar
  36. 37.
    Devictor DJ, Nguyen DT (2001) Foregoing life sustaining treatments: how the decision is made in French pediatrie intensive care units. Crit Care Med 29:1356–1359PubMedGoogle Scholar
  37. 38.
    Kalish R (1980) Death 8c Dying: Views From Many Cultures. Farmingdale, NY, Bay wood 39–46Google Scholar
  38. 39.
    Asai A, Ohnishi M, Nishigaki E et al (2002) Attitudes of the Japanese public and doctors towards use of archived information and samples without informed consent: preliminary findings based on focus group interviews. BMC Med Ethics 3:1–3CrossRefPubMedCentralGoogle Scholar
  39. 40.
    Asai A, Fukuhara S, Inoshita O et al (1997) Medical decisions concerning the end of life: a discussion with Japanese physicians. J Med Ethics 23:323–327PubMedCrossRefPubMedCentralGoogle Scholar
  40. 41.
    Sehgal AR, Weisheit C, Miura Y et al (1996) Advance directives and withdrawal of dialysis in the United States, Germany, and Japan. JAMA 276:1652–1656PubMedCrossRefGoogle Scholar
  41. 42.
    Sprung J, Oppenheim A (1998) End-of-life decisions in critical care medicine. Where are we headed? Critical Care Medicine 26:201–202Google Scholar
  42. 43.
    Gilligan T, Koenig B, Raffin TA (1998) Ethical decision-making in critical care in Hong Kong. Crit Care Med 26:447–451PubMedGoogle Scholar
  43. 44.
    Saeed KS (1999) How physician executives and clinicians perceive ethical issues in Saudi Arabian hospitals. J Med Ethics 25:51–56PubMedCrossRefPubMedCentralGoogle Scholar
  44. 45.
    Tangwa GB (1996) Bioethics: an African perspective. Bioethics 10:183–200PubMedCrossRefGoogle Scholar
  45. 46.
    Bilimoria P (1992) The Jaina ethic of voluntary death: a report from India. Bioethics 6:331–355PubMedCrossRefGoogle Scholar
  46. 47.
    Walter SD, Cook DJ, Guyatt GH, Spanier A, Jaeschke R, Todd TRJ, Streiner DL (1998) The Canadian Critical Care Trials Group. Confidence in life-support decisions in the intensive care unit: A survey of healthcare workers. Critical Care Medicine Vol 26:44–49Google Scholar
  47. 48.
    Cook DJ, Guyatt GH, Jaeschke R et al (1995) Determinants in Canadian health care workers of the decision to withdraw life support from the critically ill. Canadian Critical Care Trials Group. JAMA 273:703–708Google Scholar
  48. 49.
    Van der Maas PJ, van der Wal G, Haverkate I (1996) Euthanasia, physician-assisted suicide, and other medical practices involving the end of life in the Netherlands, 1990-1995. N Engl J Med 335:1699–1705PubMedCrossRefGoogle Scholar
  49. 50.
    Deliens L, Mortier F, Bilsen J et al (2000) End-of-life decisions in medical practice in Flanders, Belgium: a nationwide survey. Lancet 25 356:1806–1811CrossRefGoogle Scholar
  50. 51.
    Sullivan AD, Hedberg K, Hopkins D (2001) Legalized physician-assisted suicide in Oregon, 1998-2000. N Engl J Med 344:605–607PubMedCrossRefGoogle Scholar
  51. 52.
    Curtis JR, Wenrich MD, Carline JD et al (2001) Understanding physicians’ skills at providing end-of-life care perspectives of patients, families, and health care workers J Gen Intern Med 16:41–49Google Scholar
  52. 53.
    Kollef MH (1996) Private attending physician status and the withdrawal of life-sustaining interventions in a medical intensive care unit population. Crit Care Med 24:968–975PubMedGoogle Scholar
  53. 54.
    (1996) American Board of Internal Medicine: Caring for the Dying: Identification and Promotion of Physician Competency. Philadelphia, PA. American Board of Internal MedicineGoogle Scholar
  54. 55.
    Pochard F, Azoulay E, Chevret S et al (2001) Symptoms of anxiety and depression in family members of intensive care unit patients: ethical hypothesis regarding decision-making capacity. Crit Care Med 29:1893–1897PubMedGoogle Scholar
  55. 56.
    Azoulay E, Pochard F, Chevret S et al (2003) Family participation in care to the critically ill: opinions of families and staff. Intensive Care Med 29:1498–1504PubMedCrossRefGoogle Scholar
  56. 57.
    Chochinov HM (2002) Dignity-Conserving Care. A new model for palliative care. JAMA 287:2253–2260Google Scholar
  57. 58.
    Levy MM (2001) End-of-life care in the intensive care unit: can we do better? Crit Care Med(2 Suppl):N56–61Google Scholar
  58. 59.
    (1989) The Appleton Consensus: Suggested international guidelines for decisions to forgo medial treatment. J Med Ethics 15:129–136Google Scholar
  59. 60.
    (1994) Society of Critical Care Medicine Ethics: Attitudes of critical care medicine professionals concerning distribution of intensive care recourses. Crit. Care Med 22:358–362Google Scholar
  60. 61.
    (1991) Council on Ethical and Judicial Affairs, American Medical Association: Guides for the appropriate use of do-not-resuscitate orders. JAMA 265:1868–1871Google Scholar
  61. 62.
    (1991) American Thoracic Society: Withholding and withdrawing life-sustaining therapy. Am Rev Respir Dis 144:726–731Google Scholar
  62. 63.
    (1996) Council on Scientific Affairs, American Medical Association: Good care of the dying patient. JAMA 275:474–478Google Scholar
  63. 64.
    Rubenfeld GD, Angus DC, Pinsky MR et al (1999) Outcomes research in critical care: results of the American Thoracic Society Critical Care Assembly Workshop on Outcomes Research. The Members of the Outcomes Research Workshop. Am J Respir Crit Care Med 160:358–367Google Scholar
  64. 65.
    Lee K, Angus DC, Abramson NS (1996) Cardiopulmonary resuscitation: What cost to cheat death? CCM 24:2047–1053Google Scholar
  65. 66.
    (1982) President’s Commission for the Study of Ethical Problems in Medicine and Biomedicai and Behavioral Research. Making Health Care Decisions. Washington, DC: US Government Printing OfficeGoogle Scholar
  66. 67.
    Lemaire FJ, ESICM Task Force (2003) A European directive for clinical research. Intensive Care Med 29:1818–1820PubMedCrossRefGoogle Scholar
  67. 68.
    Cher DJ, Lenert LA (2001) Method of Medicare reimbursement and the rate of potentially ineffective care of critically ill patients. JAMA 278:1001–1007CrossRefGoogle Scholar
  68. 69.
    Chloe Bawter, Mark G. Brennan Yvette Coldicott (2002) The Practical Guide to Medical Ethics & Law. Pastest edition. G Ramsay, EM Rubulotta, MM Levy. Case Description 182–187Google Scholar
  69. 70.
    Block SD, Sullivan AM (1998) Attitudes about end of life care: a national cross sectional study. J Palliat Med 1:347–355PubMedCrossRefGoogle Scholar
  70. 71.
    McLean RF, Tarshis J, Mazer CD, Szalai JP (2000) Death in two Canadian intensive care units: Institutional difference and changes over time. Crit Care Med 28:100–103PubMedGoogle Scholar
  71. 72.
    Abrahm JL (2003) Update in palliative medicine and end-of-life care. Annu Rev Med 54:53–72PubMedCrossRefGoogle Scholar
  72. 73.
    Dunstan GR (1985) Hard questions in intensive care. A moralist answers questions put to him at a meeting of the Intensive Care Society. Anaesthesia 40:479–492Google Scholar
  73. 74.
    Chochinov HM (2002) Dignity-conserving care-A new model for palliative care. JAMA Vol 287, No 17:2253–2260PubMedCrossRefGoogle Scholar
  74. 75.
    Reb M (2003) Palliative and End-of-life Care: Policy analysis. Oncol Nurs Forum 30:35–50PubMedCrossRefGoogle Scholar

Copyright information

© Springer-Verlag Italia 2004

Authors and Affiliations

  • F. M. Rubulotta
  • L. Serra
  • A. Gullo

There are no affiliations available

Personalised recommendations