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Withholding and Withdrawing Life-Sustaining Treatment

  • Ralf J. JoxEmail author
Chapter

Abstract

Population-based studies have demonstrated that a significant and increasing proportion of deaths is preceded by a decision to withhold or withdraw life-sustaining treatment, defined as a treatment without which life would, with a very high probability, end within a foreseeable period. This chapter discusses ethical considerations around withholding and withdrawing life-sustaining treatments with a focus on neurologic disease. I discuss epidemiology, definitions and terminology, the ethical criteria for guiding decision-making and present a goals of care-based algorithm that may help make clinical decisions near the end of life. This algorithms suggests that treatment should not be administered unless it is both medically appropriate (indicated) and supported by the patient’s autonomous will. If patients or proxies demand a treatment considered medically inappropriate, the ethically correct response depends on the analysis of the underlying reasons of conflict. The chapter ends with some practical suggestions concerning advance care planning, palliative care consultation and clinical ethics consultation.

Keywords

Withholding treatment Terminal care Life support care Palliative care Ethics consultation 

References

  1. 1.
    van der Heide A, Deliens L, Faisst K, Nilstun T, Norup M, Paci E, et al. End-of-life decision-making in six European countries: descriptive study. Lancet. 2003;362(9381):345–50.CrossRefGoogle Scholar
  2. 2.
    Seale C. End-of-life decisions in the UK involving medical practitioners. Palliat Med. 2009;23(3):198–204.CrossRefGoogle Scholar
  3. 3.
    Pennec S, Monnier A, Pontone S, Aubry R. End-of-life medical decisions in France: a death certificate follow-up survey 5 years after the 2005 act of parliament on patients’ rights and end of life. BMC Palliat Care. 2012;11:25.CrossRefGoogle Scholar
  4. 4.
    Schildmann J, Dahmen B, Vollmann J. End-of-life practices of physicians in Germany. Dtsch Med Wochenschr. 2015;140(1):e1–6.CrossRefGoogle Scholar
  5. 5.
    Schmid M, Zellweger U, Bosshard G, Bopp M. Medical end-of-life decisions in Switzerland 2001 and 2013: who is involved and how does the decision-making capacity of the patient impact? Swiss Med Wkly. 2016;146:w14307.PubMedGoogle Scholar
  6. 6.
    Sprung CL, Cohen SL, Sjokvist P, Baras M, Bulow HH, Hovilehto S, et al. End-of-life practices in European intensive care units: the Ethicus Study. JAMA. 2003;290(6):790–7.CrossRefGoogle Scholar
  7. 7.
    Vincent JL, Berre J, Creteur J. Withholding and withdrawing life prolonging treatment in the intensive care unit: a current European perspective. Chron Respir Dis. 2004;1(2):115–20.CrossRefGoogle Scholar
  8. 8.
    Mark NM, Rayner SG, Lee NJ, Curtis JR. Global variability in withholding and withdrawal of life-sustaining treatment in the intensive care unit: a systematic review. Intensive Care Med. 2015;41(9):1572–85.CrossRefGoogle Scholar
  9. 9.
    Quill CM, Ratcliffe SJ, Harhay MO, Halpern SD. Variation in decisions to forgo life-sustaining therapies in US ICUs. Chest. 2014;146(3):573–82.CrossRefGoogle Scholar
  10. 10.
    Seale C. The role of doctors’ religious faith and ethnicity in taking ethically controversial decisions during end-of-life care. J Med Ethics. 2010;36(11):677–82.CrossRefGoogle Scholar
  11. 11.
    Kinzbrunner BM. Jewish medical ethics and end-of-life care. J Palliat Med. 2004;7(4):558–73.CrossRefGoogle Scholar
  12. 12.
    Zientek DM. Artificial nutrition and hydration in Catholic healthcare: balancing tradition, recent teaching, and law. HEC Forum. 2013;25(2):145–59.CrossRefGoogle Scholar
  13. 13.
    Bulow HH, Sprung CL, Reinhart K, Prayag S, Du B, Armaganidis A, et al. The world’s major religions’ points of view on end-of-life decisions in the intensive care unit. Intensive Care Med. 2008;34(3):423–30.CrossRefGoogle Scholar
  14. 14.
    Sprung CL, Maia P, Bulow HH, Ricou B, Armaganidis A, Baras M, et al. The importance of religious affiliation and culture on end-of-life decisions in European intensive care units. Intensive Care Med. 2007;33(10):1732–9.CrossRefGoogle Scholar
  15. 15.
    Jox RJ, Krebs M, Fegg M, Reiter-Theil S, Frey L, Eisenmenger W, et al. Limiting life-sustaining treatment in German intensive care units: a multiprofessional survey. J Crit Care. 2010;25(3):413–9.CrossRefGoogle Scholar
  16. 16.
    Wood GG, Martin E. Withholding and withdrawing life-sustaining therapy in a Canadian intensive care unit. Can J Anaesth. 1995;42(3):186–91.CrossRefGoogle Scholar
  17. 17.
    Asch DA, Christakis NA. Why do physicians prefer to withdraw some forms of life support over others? Intrinsic attributes of life-sustaining treatments are associated with physicians’ preferences. Med Care. 1996;34(2):103–11.CrossRefGoogle Scholar
  18. 18.
    Asch DA, Faber-Langendoen K, Shea JA, Christakis NA. The sequence of withdrawing life-sustaining treatment from patients. Am J Med. 1999;107(2):153–6.CrossRefGoogle Scholar
  19. 19.
    World Health Organization. WHO definition of palliative care 2012. Available from: http://www.who.int/cancer/palliative/definition/en/.
  20. 20.
    Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8):733–42.CrossRefGoogle Scholar
  21. 21.
    Haun MW, Estel S, Rucker G, Friederich HC, Villalobos M, Thomas M, et al. Early palliative care for adults with advanced cancer. Cochrane Database Syst Rev. 2017;(6):Cd011129.Google Scholar
  22. 22.
    Cochrane TI. Withdrawing and withholding life-sustaining treatment. Handb Clin Neurol. 2013;118:147–53.CrossRefGoogle Scholar
  23. 23.
    World Health Organization. The top 10 causes of death, Fact sheet updated January 2017. Geneva: WHO; 2017. Available from: http://www.who.int/mediacentre/factsheets/fs310/en/.Google Scholar
  24. 24.
    Alonso A, Ebert AD, Dorr D, Buchheidt D, Hennerici MG, Szabo K. End-of-life decisions in acute stroke patients: an observational cohort study. BMC Palliat Care. 2016;15:38.CrossRefGoogle Scholar
  25. 25.
    Holloway RG, Benesch CG, Burgin WS, Zentner JB. Prognosis and decision making in severe stroke. JAMA. 2005;294(6):725–33.CrossRefGoogle Scholar
  26. 26.
    van der Steen JT, Radbruch L, Hertogh CM, de Boer ME, Hughes JC, Larkin P, et al. White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care. Palliat Med. 2014;28(3):197–209.CrossRefGoogle Scholar
  27. 27.
    Veldink JH, Wokke JH, van der Wal G, Vianney de Jong JM, van den Berg LH. Euthanasia and physician-assisted suicide among patients with amyotrophic lateral sclerosis in the Netherlands. N Engl J Med. 2002;346(21):1638–44.CrossRefGoogle Scholar
  28. 28.
    Tuck KK, Zive DM, Schmidt TA, Carter J, Nutt J, Fromme EK. Life-sustaining treatment orders, location of death and co-morbid conditions in decedents with Parkinson’s disease. Parkinsonism Relat Disord. 2015;21(10):1205–9.CrossRefGoogle Scholar
  29. 29.
    Seeber AA, Hijdra A, Vermeulen M, Willems DL. Discussions about treatment restrictions in chronic neurologic diseases: a structured review. Neurology. 2012;78(8):590–7.CrossRefGoogle Scholar
  30. 30.
    Jox RJ, Kuehlmeyer K, Klein AM, Herzog J, Schaupp M, Nowak DA, et al. Diagnosis and decision making for patients with disorders of consciousness: a survey among family members. Arch Phys Med Rehabil. 2015;96(2):323–30.CrossRefGoogle Scholar
  31. 31.
    Creutzfeldt CJ, Holloway RG. Treatment decisions after severe stroke: uncertainty and biases. Stroke. 2012;43(12):3405–8.CrossRefGoogle Scholar
  32. 32.
    Rachels J. Active and passive euthanasia. N Engl J Med. 1975;292(2):78–80.CrossRefGoogle Scholar
  33. 33.
    Munshi L, Dhanani S, Shemie SD, Hornby L, Gore G, Shahin J. Predicting time to death after withdrawal of life-sustaining therapy. Intensive Care Med. 2015;41(6):1014–28.CrossRefGoogle Scholar
  34. 34.
    Rubenfeld GD. Principles and practice of withdrawing life-sustaining treatments. Crit Care Clin. 2004;20(3):435–51. ixCrossRefGoogle Scholar
  35. 35.
    Campbell CS, Cox JC. Hospice-assisted death? A study of Oregon hospices on death with dignity. Am J Hosp Palliat Care. 2012;29(3):227–35.CrossRefGoogle Scholar
  36. 36.
    van Beinum A, Hornby L, Ward R, Ramsay T, Dhanani S. Variations in the operational process of withdrawal of life-sustaining therapy. Crit Care Med. 2015;43(10):e450–7.CrossRefGoogle Scholar
  37. 37.
    Sprung CL, Paruk F, Kissoon N, Hartog CS, Lipman J, Du B, et al. The Durban World Congress Ethics Round Table Conference Report: I. Differences between withholding and withdrawing life-sustaining treatments. J Crit Care. 2014;29(6):890–5.CrossRefGoogle Scholar
  38. 38.
    Barilan YM. Rethinking the withholding/withdrawing distinction: the cultural construction of “life-support” and the framing of end-of-life decisions. Multidiscip Respir Med. 2015;10(1):10.CrossRefGoogle Scholar
  39. 39.
    Marckmann G, editor. Praxisbuch Ethik der Medizin. Berlin: Medizinisch Wissenschaftliche Verlagsgesellschaft. isbn:978-3-95466-117-6.Google Scholar
  40. 40.
    Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ. 2005;330(7498):1007–11.CrossRefGoogle Scholar
  41. 41.
    Jox RJ. Sterben lassen. Über Entscheidungen am Ende des Lebens. Hamburg: Rowohlt; 2013.Google Scholar
  42. 42.
    Jox RJ, Schaider A, Marckmann G, Borasio GD. Medical futility at the end of life: the perspectives of intensive care and palliative care clinicians. J Med Ethics. 2012;38(9):540–5.CrossRefGoogle Scholar
  43. 43.
    Burns JP, Truog RD. Futility: a concept in evolution. Chest. 2007;132(6):1987–93.CrossRefGoogle Scholar
  44. 44.
    Pellegrino ED. Futility in medical decisions: the word and the concept. HEC Forum. 2005;17(4):308–18.CrossRefGoogle Scholar
  45. 45.
    Schneiderman LJ. Defining medical futility and improving medical care. J Bioeth Inq. 2011;8(2):123–31.CrossRefGoogle Scholar
  46. 46.
    Blair RJR, Colledge E, Murray L, Mitchell DG. A selective impairment in the processing of sad and fearful expressions in children with psychopathic tendencies. J Abnorm Child Psychol. 2001;29(6):491–8.CrossRefGoogle Scholar
  47. 47.
    Bruno MA, Bernheim JL, Ledoux D, Pellas F, Demertzi A, Laureys S. A survey on self-assessed well-being in a cohort of chronic locked-in syndrome patients: happy majority, miserable minority. BMJ Open. 2011;1(1):e000039.CrossRefGoogle Scholar
  48. 48.
    Lule D, Zickler C, Hacker S, Bruno MA, Demertzi A, Pellas F, et al. Life can be worth living in locked-in syndrome. Prog Brain Res. 2009;177:339–51.CrossRefGoogle Scholar
  49. 49.
    Rousseau MC, Baumstarck K, Billette de Villemeur T, Auquier P. Evaluation of quality of life in individuals with severe chronic motor disability: a major challenge. Intractable Rare Dis Res. 2016;5(2):83–9.CrossRefGoogle Scholar
  50. 50.
    Rousseau MC, Pietra S, Nadji M, Billette de Villemeur T. Evaluation of quality of life in complete locked-in syndrome patients. J Palliat Med. 2013;16(11):1455–8.CrossRefGoogle Scholar
  51. 51.
    Appelbaum PS. Clinical practice. Assessment of patients’ competence to consent to treatment. N Engl J Med. 2007;357(18):1834–40.CrossRefGoogle Scholar
  52. 52.
    Fagerlin A, Schneider CE. Enough. The failure of the living will. Hast Cent Rep. 2004;34(2):30–42.CrossRefGoogle Scholar
  53. 53.
    Jox RJ. Preparing existential decisions in later life. Advance healthcare planning. In: Schweda M, Pfaller L, Brauer K, Adloff F, Schicktanz S, editors. Planning later life bioethics and public health in ageing societies. Burlington: Ashgate Publishing Limited; 2017. p. 164–80.CrossRefGoogle Scholar
  54. 54.
    Shalowitz DI, Garrett-Mayer E, Wendler D. The accuracy of surrogate decision makers: a systematic review. Arch Intern Med. 2006;166(5):493–7.CrossRefGoogle Scholar
  55. 55.
    Houben CH, Spruit MA, Groenen MT, Wouters EF, Janssen DJ. Efficacy of advance care planning: a systematic review and meta-analysis. J Am Med Dir Assoc. 2014;15(7):477–89.CrossRefGoogle Scholar
  56. 56.
    Robinson L, Dickinson C, Rousseau N, Beyer F, Clark A, Hughes J, et al. A systematic review of the effectiveness of advance care planning interventions for people with cognitive impairment and dementia. Age Ageing. 2012;41(2):263–9.CrossRefGoogle Scholar
  57. 57.
    Brinkman-Stoppelenburg A, Rietjens JA, van der Heide A. The effects of advance care planning on end-of-life care: a systematic review. Palliat Med. 2014;28(8):1000–25.CrossRefGoogle Scholar
  58. 58.
    Austin CA, Mohottige D, Sudore RL, Smith AK, Hanson LC. Tools to promote shared decision making in serious illness: a systematic review. JAMA Intern Med. 2015;175(7):1213–21.CrossRefGoogle Scholar
  59. 59.
    Martin RS, Hayes B, Gregorevic K, Lim WK. The effects of advance care planning interventions on nursing home residents: a systematic review. J Am Med Dir Assoc. 2016;17(4):284–93.CrossRefGoogle Scholar
  60. 60.
    Oliver DJ, Borasio GD, Caraceni A, de Visser M, Grisold W, Lorenzl S, et al. A consensus review on the development of palliative care for patients with chronic and progressive neurological disease. Eur J Neurol. 2016;23(1):30–8.CrossRefGoogle Scholar
  61. 61.
    Kwak J, Wallendal MS, Fritsch T, Leo G, Hyde T. Advance care planning and proxy decision making for patients with advanced Parkinson disease. South Med J. 2014;107(3):178–85.CrossRefGoogle Scholar
  62. 62.
    Fritz L, Dirven L, Reijneveld JC, Koekkoek JA, Stiggelbout AM, Pasman HR, et al. Advance care planning in glioblastoma patients. Cancers. 2016;8(11).CrossRefGoogle Scholar
  63. 63.
    Levi BH, Simmons Z, Hanna C, Brothers A, Lehman E, Farace E, et al. Advance care planning for patients with amyotrophic lateral sclerosis. Amyotroph Lateral Scler Frontotemporal Degener. 2017:1–9.Google Scholar
  64. 64.
    Tran LN, Back AL, Creutzfeldt CJ. Palliative care consultations in the Neuro-ICU: a Qualitative Study. Neurocrit Care. 2016;25(2):266–72.CrossRefGoogle Scholar
  65. 65.
    Creutzfeldt CJ, Engelberg RA, Healey L, Cheever CS, Becker KJ, Holloway RG, et al. Palliative care needs in the Neuro-ICU. Crit Care Med. 2015;43(8):1677–84.CrossRefGoogle Scholar
  66. 66.
    Fox E, Myers S, Pearlman RA. Ethics consultation in United States hospitals: a national survey. Am J Bioeth. 2007;7(2):13–25.CrossRefGoogle Scholar
  67. 67.
    American Society for Bioethics and Humanities. Core competencies for Health Care Ethics Consultation Glenview, IL, USA. 2010. Available from: http://www.asbh.org/publications/content/core.html.

Copyright information

© Springer International Publishing AG, part of Springer Nature 2019

Authors and Affiliations

  1. 1.Institute of Ethics, History and Theory of Medicine, Ludwig-Maximilian University MunichMunichGermany
  2. 2.Geriatric Palliative CareLausanne University HospitalLausanneSwitzerland

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