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Directing the End of Life in Dementia

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Living with Dementia

Part of the book series: Advances in Neuroethics ((AIN))

Abstract

Delivery of high-quality end-of-life care—care that both increases the likelihood of desired outcomes and is consistent with current professional knowledge—to persons with dementia is fraught with challenges. Among these, a key challenge is the need for early and ongoing decision-making. Due to progressive cognitive and functional decline, persons with dementia may lack the capacity to decide for themselves, and end-of-life decision-making will often fall to surrogate decision makers. If clear directions have not been left by the patient prior to her decline- and even if they have been— surrogates and clinicians are often uncertain whether the care they are providing is the care that the patient would have chosen for herself had she been able to do so. In this chapter, we outline various ethical challenges that arise when directing the end of life in dementia. We first consider four foundational issues relevant to decision-making by and for persons with dementia: autonomy, personal dignity, self-identity, and interests. Next, we consider how decisions relevant to end-of-life care might be made by, with, and for persons with dementia with a particular focus on US legal mechanisms. Finally, we evaluate several interventions people with dementia might consider at the end of life and their concomitant ethical, legal, and clinical dimensions.

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References

  1. The epidemiology and impact of dementia: current state and future trends [Internet]. World Health Organization; [cited 2019 Aug 11]. http://www.who.int/mental_health/neurology/dementia/en/.

  2. Alzheimer’s Association. 2019 Alzheimer’s disease facts and figures. Alzheimers Dement. 2019;15(3):321–87.

    Article  Google Scholar 

  3. Blasi ZV, Hurley AC, Volicer L. End-of-life care in dementia: a review of problems, prospects, and solutions in practice. J Am Med Dir Assoc. 2002;3(2):57–65.

    Article  PubMed  Google Scholar 

  4. Dening KH, Greenish W, Jones L, Mandal U, Sampson EL. Barriers to providing end-of-life care for people with dementia: a whole-system qualitative study. BMJ Support Palliat Care. 2012;2(2):103–7.

    Article  PubMed  Google Scholar 

  5. Mitchell SL. Care of patients with advanced dementia [Internet]. In: Morrison RS, Yaffe K, Wilterdink JL, editors. UpToDate. Wolters Kluwer. 2019. https://www.uptodate.com/contents/care-of-patients-with-advanced-dementia#H423254540.

  6. McCarthy M, Addington-Hall J, Altmann D. The experience of dying with dementia: a retrospective study. Int J Geriatr Psychiatry. 1997;12(3):404–9.

    Article  CAS  PubMed  Google Scholar 

  7. Aminoff BZ, Adunsky A. Dying dementia patients: too much suffering, too little palliation. Am J Hosp Palliat Med. 2005;22(5):344–8.

    Article  Google Scholar 

  8. Childress JF. The place of autonomy in bioethics. Hast Cent Rep. 1990;20(1):12–7.

    Article  CAS  Google Scholar 

  9. Dworkin R. Life’s dominion: an argument about abortion, euthanasia, and individual freedom. New York: Knopf; 1993.

    Google Scholar 

  10. Christman J, Anderson J. Introduction. In: Autonomy and the challenges of liberalism: new essays. Cambridge: Cambridge University Press; 2005. p. 1–23.

    Chapter  Google Scholar 

  11. Buss S, Westlund A. Personal autonomy. In: Zalta EM, editor. Stanford encyclopedia of philosophy. Stanford: Metaphysics Research Lab, Center for the Study of Language and Information; 2018.

    Google Scholar 

  12. Ubel PA, Loewenstein G, Schwartz N, Smith D. Misimagining the unimaginable: the disability paradox and health care decision making. Health Psychol. 2005;24(4 Suppl):S57–62.

    Article  PubMed  Google Scholar 

  13. Christman J. Relational autonomy and the social dynamics of paternalism. Ethical Theory Moral Pract. 2014;17:369–82.

    Article  Google Scholar 

  14. Specker Sullivan L, Niker F. Relational autonomy, paternalism, and maternalism. Ethical Theory Moral Pract. 2018;21:649–67.

    Article  Google Scholar 

  15. Mackenzie C, Stoljar N. Introduction: autonomy refigured. In: Relational autonomy: feminist perspectives on autonomy, agency, and the social self. Oxford: Oxford University Press; 2000.

    Google Scholar 

  16. Kant I, Gregor MJ. Groundwork of the metaphysics of morals. Cambridge, U.K: Cambridge University Press. 1998.

    Google Scholar 

  17. Pullman D. Death, dignity, and moral nonsense. J Palliat Care. 2004;20(3):171–8.

    Article  PubMed  Google Scholar 

  18. van Gennip IE, Pasman HRW, Oosterveld-Vlug MG, Willems DL, Onwuteaka-Philipsen BD. How dementia affects personal dignity: a qualitative study on the perspective of individuals with mild to moderate dementia. J Gerontol Ser B. 2016;71(3):491–501.

    Article  Google Scholar 

  19. Tranvåg O, Petersen KA, Nåden D. Relational interactions preserving dignity experience: perceptions of persons living with dementia. Nurs Ethics. 2015;22(5):577–93.

    Article  PubMed  Google Scholar 

  20. Koppelman ER. Dementia and dignity: towards a new method of surrogate decision making. J Med Philos. 2002;27(1):65–85.

    Article  PubMed  Google Scholar 

  21. Shoemaker D. Personal identity and ethics. In: Zalta EM, editor. Stanford encyclopedia of philosophy. Stanford: Metaphysics Research Lab, Center for the Study of Language and Information; 2015.

    Google Scholar 

  22. Olson ET. Was I ever a fetus? Philos Phenomenol Res. 1997;57(1):95–110.

    Google Scholar 

  23. DeGrazia D. Advance Directives, dementia, and “the someone else problem”. Bioethics. 1999;13(5):373.

    Article  PubMed  Google Scholar 

  24. Parfit D. Reasons and persons. Oxford: Oxford University Press; 1984.

    Google Scholar 

  25. Davis DS. Alzheimer’s disease and pre-emptive suicide. J Med Ethics. 2014;40(8):543–9.

    Article  PubMed  Google Scholar 

  26. Dresser R. Dworkin on dementia: elegant theory, questionable policy. 1995;25:32–8.

    Google Scholar 

  27. Dresser R, Robertson JA. Quality of life and non-treatment decisions for incompetent patients: critique of the orthodox approach. Law Med Health Care. 1989;17(3):234–44.

    Article  CAS  PubMed  Google Scholar 

  28. Jaworska A. Respecting the margins of agency: Alzheimer’s patients and the capacity to value. Philos Public Aff. 1999;28(2):105–38.

    Article  PubMed  Google Scholar 

  29. Francis LP. Decisionmaking at the end of life: patients with Alzheimer’s or other dementias. Georg Law Rev. 2001;35(539):539–92.

    CAS  Google Scholar 

  30. Smebye KL, Kirkevold M, Engedal K. How do persons with dementia participate in decision making related to health and daily care? A multi-case study. BMC Health Serv Res. 2012;12:241.

    Article  PubMed  PubMed Central  Google Scholar 

  31. Hirschman KB, Joyce C, James B, Xie S, Karlawish JHT. Do Alzheimer’s disease patients want to participate in a treatment decision, and would their caregivers let them? Gerontologist. 2005;45(3):381–8.

    Article  PubMed  Google Scholar 

  32. Miller LM, Whitlatch CJ, Lyons KS. Shared decision-making in dementia: a review of patient and family carer involvement. Dementia. 2016;15(5):1141–57.

    Article  PubMed  Google Scholar 

  33. Karlawish JHT, Casarett D, James B, Xie S, Kim S. The ability of persons with Alzheimer disease (AD) to make a decision about taking an AD treatment. Neurology. 2005;64(9):1514–9.

    Article  CAS  PubMed  Google Scholar 

  34. Hirschman KB, Xie SX, Feudtner C, Karlawish JHT. How does an Alzheimer’s disease patient’s role in medical decision making change over time? J Geriatr Psychiatry Neurol. 2004;17(2):55–60.

    Article  PubMed  Google Scholar 

  35. Marson DC, Ingram KK, Cody HA, Harrel LE. Assessing the competency of patients with Alzheimer’s disease under different legal standards. Arch Neurol. 1995;52:949–54.

    Article  CAS  PubMed  Google Scholar 

  36. Gaster B, Larson EB, Curtis JR. Advance directives for dementia: meeting a unique challenge. JAMA. 2017;318(22):2175–6.

    Article  PubMed  Google Scholar 

  37. Steinbock B, Menzel PT. Advance directives for refusing life-sustaining treatment in dementia. Hastings Cent Rep. 2018;48(3 Suppl):S75–S79. https://doi.org/10.1002/hast.919. PMID: 30311234.

  38. Quill TE, Ganzini L, Truog R, Pope TM. Voluntarily stopping eating and drinking among patients with serious advanced illness—clinical, ethical, and legal aspects. JAMA Intern Med. 2018;178(1):123–7.

    Article  PubMed  Google Scholar 

  39. Black BS, Fogarty LA, Phillips H, Finucane T, Loreck DL, Baker A, et al. Surrogate decision makers’ understanding of dementia patients’ prior wishes for end-of-life care. J Aging Health. 2009;21(4):627–50.

    Article  PubMed  PubMed Central  Google Scholar 

  40. Sellars M, Chung O, Nolte L, Tong A, Pond D, Fetherstonhaugh D, et al. Perspectives of people with dementia and carers on advance care planning and end-of-life care: a systematic review and thematic synthesis of qualitative studies. Palliat Med. 2019;33(3):274–90.

    Article  PubMed  Google Scholar 

  41. Nevada Senate Bill (SB121) (2019). https://legiscan.com/NV/bill/SB121/2019.

  42. Volicer L, Pope TM, Steinberg KE, Terman SA. Response to resolution A19 regarding “stopping eating and drinking by advance directives”. J Am Med Dir Assoc. 2019;S1525-8610(19)30369-X. https://doi.org/10.1016/j.jamda.2019.04.010. Epub ahead of print. PMID: 31160261.

  43. Aleccia J. ‘Aggressive’ new advance directive would let dementia patients refuse food. Kaiser Health News [Internet]; 3 March 2018. https://khn.org/news/aggressive-new-advance-directive-would-let-dementia-patients-refuse-food/.

  44. Yadav KN, Gabler NB, Cooney E, Kent S, Kim J, Herbst N, et al. Approximately one in three US adults completes any type of advance directive for end-of-life care. Health Aff. 2017;36(7):1244–51.

    Article  Google Scholar 

  45. Lingler JH, Hirschman KB, Garand L, Dew MA, Becker JT, Schulz R, et al. Frequency and correlates of advance planning among cognitively impaired older adults. Am J Geriatr Psychiatry. 2008;16(8):643–9.

    Article  PubMed  PubMed Central  Google Scholar 

  46. Sehgal A, Galbraith A, Chesney M, Schoenfeld P, Charles G, Lo B. How strictly do dialysis patients want their advance directives followed? JAMA. 1992;267(1):59–63.

    Google Scholar 

  47. Hawkins NA, Ditto PH, Danks JH. Micromanaging death: process preferences, values, and goals in end-of-life medical decision making. Gerontologist. 2005;45(1):107–17.

    Article  PubMed  Google Scholar 

  48. Davis J. Precendent autonomy and subsequent consent. Ethical Theory Moral Pract. 2004;7:267–91.

    Article  PubMed  Google Scholar 

  49. Wilson TD, Gilbert DT. Affective forecasting. Adv Exp Soc Psychol. 2003;35:345–411.

    Google Scholar 

  50. Menzel PT, Steinbock B. Advanced directives, dementia, and physician-assisted death. J Law Med Ethics. 2013;41:484–500.

    Article  PubMed  Google Scholar 

  51. Dresser R. Pre-emptive suicide, precedent autonomy and preclinical Alzheimer disease. J Med Ethics. 2014;40:550–1.

    Article  PubMed  Google Scholar 

  52. Dresser R. Dementia, dignity, and physician-assisted death. (Chapter 7, p. 105–121) in Muders, S. (Ed.). Human dignity and assisted death. Oxford University Press. 2017.

    Google Scholar 

  53. Menzel PT, Chandler-Cramer C. Advance directives, dementia, and withholding food and water by mouth. Hast Cent Rep. 2014;44(3):23–37.

    Article  Google Scholar 

  54. Battin MP. Euthanansia and physician-assisted suicide. (Chapter 26, p. 673–704) in: LaFollette H, editor. The Oxford handbook of practical ethics. 2003.

    Google Scholar 

  55. Kohn NA, Blumenthal JA, Campbell AT. Supported decision-making: a viable alternative to guardianship? Penn State Law Rev. 2013;117(4):1111–58.

    Google Scholar 

  56. Theodorou EJ. Supported decision-making in the lone-stars state. N Y Univ Law Rev. 2018;93(4):973–1013.

    Google Scholar 

  57. Silvers A, Francis LP. An Americans with Disabilities Act for everyone, and for the ages as well. Cardozo Law Review. 39(2017–2018):669–7.

    Google Scholar 

  58. Clark A, Chalmers D. The extended mind. Analysis. 1998;58(1):7–19.

    Article  Google Scholar 

  59. Allen Z, Pogach D. More states pass supported decision-making agreement Laws. Bifocal. 2019;41(1):161.

    Google Scholar 

  60. ABA urges supported decision making as less-restrictive alternative to guardianship. Bifocal. 38(6):95–6.

    Google Scholar 

  61. Largent EA, Peterson A. Supported decision making in the United States and abroad. J Health Care Law Policy. 2020;forthcoming.

    Google Scholar 

  62. Black BS, Rabins PV, Sugarman J, Karlawish JH. Seeking assent and respecting dissent in dementia research. Am J Geriatr Psychiatry. 2010;18(1):77–85.

    Article  PubMed  PubMed Central  Google Scholar 

  63. Berg JW, Appelbaum PS, Lidz CW, Parker LS. The legal theory of informed consent. In: Informed consent: legal theory and clinical practice. Oxford: Oxford University Press; 2001. p. 112–6.

    Google Scholar 

  64. Dening KH, King M, Jones L, Vickestaff V, Sampson EL. Advance care planning in dementia: do family Carers know the treatment preferences of people with early dementia? PLoS One. 2016;11(7):e0159056.

    Article  CAS  Google Scholar 

  65. Hirschman KB, Kapo JM, Karlawish JHT. Why doesn’t a family member of a person with advanced dementia use a substituted judgment when making a decision for that person? Am J Geriatr Psychiatry. 2006;14(8):659–7.

    Article  PubMed  Google Scholar 

  66. Emanuel EJ, Fairclough DL, Slutsman J, Emanuel LL. Understanding the economic and other burdens of terminal illness for patients and their caregivers. Ann Intern Med. 2000;349(20):451.

    Article  Google Scholar 

  67. Wolff J, Sydney M, Frick K. Findings from a national survey of informal caregivers. Arch Intern Med. 2007;167(1):40–6.

    Article  PubMed  Google Scholar 

  68. Singer P, Martin D, Kelner M. Quality end-of-life care: patients’ perspectives. JAMA. 1999;281(2):163–8.

    Article  CAS  PubMed  Google Scholar 

  69. Steinhauser K, Christakis N, Clipp E, McNeilly M, McIntyre L, Tulsky J. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA. 2000;284(19):2476–82.

    Article  CAS  PubMed  Google Scholar 

  70. Wendler D, Rid A. Systematic review: the effect on surrogates of making treatment decisions for others. Ann Intern Med. 2011;154(5):336–46.

    Article  PubMed  Google Scholar 

  71. Sveen CA, Fredrik AW. Suicide survivors’ mental health and grief reactions: A systematic review of controlled studies. Suicide Life Threat Behav. 2008;38(1):13–29.

    Google Scholar 

  72. Caron CD, Griffith J, Arcand M. Decision making at the end of life in dementia: how family caregivers perceive their interactions with health care providers in long-term-care settings. J Appl Gerontol. 2005;24(3):231–47.

    Article  Google Scholar 

  73. Rubin EB, Buehler AE, Halpern SD. States worse than death among hospitalized patients with serious illnesses. JAMA Intern Med. 2016;176(10):1557–9.

    Article  PubMed  PubMed Central  Google Scholar 

  74. Schulz R, Mendelsohn AB, Haley WE, Mahoney D, Allen RS, Zhang S, et al. End-of-life care and the effects of bereavement on family caregivers of persons with dementia. N Engl J Med. 2003;349:1936–42.

    Article  CAS  PubMed  Google Scholar 

  75. Sulmasy D. The ethics of medically assisted nutrition and hydration at the end of life: separating the wheat from the chaff. In: Youngner SJ, Arnold RM, editors. The Oxford handbook of ethics at the end of life. New York: Oxford University Press; 2016.

    Google Scholar 

  76. Triplett P, Black BS, Phillips H, Richardson Fahrendorf S, Schwartz J, Angelino AF, et al. Content of advance directives for individuals with advanced dementia. J Aging Health. 2008;20(5):583–96.

    Article  PubMed  PubMed Central  Google Scholar 

  77. Cantor NL. On avoiding deep dementia. Hastings Cent Rep. 2018;48(4):15–24.

    Article  PubMed  Google Scholar 

  78. Chuang E, Flicker LS. When voluntary stopping of eating and drinking in advanced dementia is no longer voluntary. Hastings Cent Rep. 2018;48(4):24–5.

    Article  PubMed  Google Scholar 

  79. Gert B, Culver CM. Distinguishing between active and passive euthanasia. Clin Geriatr Med. 1986;2(1):29–36.

    Article  CAS  PubMed  Google Scholar 

  80. Chin AE, Hedberg K, Higginson GK, Fleming DW. Legalized physician-assisted suicide in Oregon--the first year’s experience. N Engl J Med. 1999;340:57–583.

    Article  Google Scholar 

  81. Largent EA, Terrasse M, Harkins K, Sisti DA, Sankar P, Karlawish JHT. Attitudes toward physician-assisted death from individuals who learn they have an Alzheimer disease biomarker. JAMA Neurol. 2019;76(7):864–6.

    Article  PubMed  PubMed Central  Google Scholar 

  82. van der Heide A, van Delden JJM, Onwuteaka-Philipsen BD. End-of-life decisions in the Netherlands over 25 years. N Engl J Med. 2017;377(5):492–4.

    Article  PubMed  Google Scholar 

  83. de Bellaigue C. Death on demand: has euthanasia gone too far? The Guardian; 18 Jan 2019.

    Google Scholar 

  84. de Boer ME, Droes R-M, Jonker C, Eefsting JA, Hertogh CMPM. Advance directives for euthanasia in dementia: do law-based opportunities lead to more euthanasia? Health Policy. 2010;98:256–62.

    Article  PubMed  Google Scholar 

  85. Sulmasy LS, Mueller PS. Ethics and the legalization of physician-assisted suicide: an American College of Physicians position paper. Ann Intern Med. 2017;167(8):576–8.

    Google Scholar 

  86. Haverkate I, Onwuteaka-Philipsen BD, van der Heide A, Kostense PJ, van der Wal G, van der Maas PJ. Refused and granted requests for euthanasia and assisted suicide in the Netherlands: interview study and structured questionnaire. Br Med J. 2000;321(7265):865–6.

    Article  CAS  Google Scholar 

  87. Lim W, Rubin E, Coats M, Morris J. Early-stage Alzheimer disease represents increased suicidal risk in relation to later stages. Alzheimer Dis Assoc Disord. 2005;19(4):214–9.

    Article  PubMed  Google Scholar 

  88. Draper B, Peisah C, Snowdon J, Brodaty H. Early dementia diagnosis and the risk of suicide and euthanasia. Alzheimers Dement. 2010;6(1):75–82.

    Article  PubMed  Google Scholar 

  89. Draper B. Suicidal behavior and assisted suicide in dementia. Int Psychogeriatr. 2015;27(10):1601–11.

    Article  PubMed  Google Scholar 

  90. Balasubramaniam M. Rational suicide in elderly adults: a clinician’s perspective. JAGS. 2018;66(5):998–1001.

    Article  Google Scholar 

  91. Bailey M. In secret, seniors discuss ‘rational suicide.’ Kaiser Health News; 25 June 2019.

    Google Scholar 

  92. Brandt RB. The rationality of suicide. In: Battin MP, Mayo DJ, editors. Suicide: the philosophical issues. New York: St. Martin’s Press; 1980.

    Google Scholar 

  93. Mayo DJ. The concept of rational suicide. J Med Philos. 1986;11(2):143–55.

    Article  CAS  PubMed  Google Scholar 

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Authors and Affiliations

  1. University of Pennsylvania, Philadelphia, PA, USA

    Katherine C. Dildy

  2. Department of Medical Ethics and Health Policy, University of Pennsylvania Perelman School of Medicine, Leonard Davis Institute of Health Economics, Philadelphia, PA, USA

    Emily A. Largent

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  1. Katherine C. Dildy
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  2. Emily A. Largent
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Correspondence to Emily A. Largent .

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Editors and Affiliations

  1. Department of Philosophy and Religious Studies, and Science Technology and Society (STS) Program, North Carolina State University, Raleigh, NC, USA

    Veljko Dubljević

  2. Department of Philosophy, University of North Carolina, Greensboro, NC, USA

    Frances Bottenberg

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Dildy, K.C., Largent, E.A. (2021). Directing the End of Life in Dementia. In: Dubljević, V., Bottenberg, F. (eds) Living with Dementia. Advances in Neuroethics. Springer, Cham. https://doi.org/10.1007/978-3-030-62073-8_5

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