Ethical Issues related to End of Life Treatment in Patients with Advanced Dementia – The Case of Artificial Nutrition and Hydration
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Patients with advanced dementia suffer from severe cognitive and functional impairment, including eating disorders. The focus of our research is on the issue of life-sustaining treatment, specifically on the social and ethical implications of tube feeding. The treatment decision, based on values of life and dignity, involves sustaining lives that many people consider not worth living. We explore the moral approach to caring for these patients and review the history of the debate on artificial nutrition and hydration showing the impact of the varying perceptions of the value of these patients' lives on changing norms. We argue that in light of the value of solidarity, decisions about life-sustaining treatment for patients with advanced dementia should be made on a case by case basis, as with any other patient, in consideration of the medical implications of the intervention which might best serve the goals of care (i.e., care and respect for dignity) for the individual patient.
- American Geriatrics Society Ethics Committee and Clinical Practice and Models of Care Committee, “American Geriatrics Society Feeding Tubes in Advanced Dementia Position Statement,” Journal of the American Geriatrics Society (62/8) 2014, p. 1590–1593.
- J. Bayley, Iris and Her Friends: A Memoir of Memory and Desire, W.W. Norton & Company, New York 2000.
- E.M. Berry, E-L Marcus, “Disorders of Eating in the Elderly,” Journal of Adult Development (7/2) 2000, p. 87–99.
- J.W. Bulger, “Principlism,” Teaching Ethics (8/1) 2007, p. 81–100.
- Civil Appeal 506/88, Yael Shefer (a Minor) by her Mother and Natural Guardian, Talila Shefer v. State of Israel .
- D. Callahan, “On Feeding the Dying,” Hastings Center Report (13/5) 1983, p. 22.
- D. Callahan, The Troubled Dream of Life: In Search of a Peaceful Death, Georgetown University Press, Washington, D.C. 2000.
- N.L. Cantor, Advance Directives and the Pursuit of Death with Dignity, Indi-ana University Press, Indiana 1993.
- E. Cohen, Commissioned Working Paper. “When Persons with Dementia Get Sick: The Care-Giver's Dilemma,” The President's Council on Bioethics, September 2004, URL: http://bioethics.georgetown.edu/pcbe/background/dementia.html [2.6.2016].
- S.J. Crutch, M.N. Rossor, “Artistic Changes in Alzheimer's Disease,” International Review of Neurobiology (74) 2006, p. 147–161.
- N.W. Dickey, “Withholding or Withdrawing Treatment – Reply,” Journal of the American Medical Association (256/4) 1986, p. 471.
- I. Doron, The Demographics of Dementia, [in:] The Law and Ethics of Dementia, C. Foster, J. Herring, I. Doron (eds.), Hart Publishing, Oxford 2014, p. 15–24.
- Federal Register 48, No. 129, July 5, 1983.
- C. Gastmans, J. De Lepeleire, “Living to the Bitter End? A Personalist Approach to Euthanasia in Persons with Severe Dementia,” Bioethics (24/2) 2010, p. 78–86.
- R. Gillon, “Medical Ethics: Four Principles Plus Attention to Scope,” British Medical Journal (309/6948) 1994, p. 184–188.
- R. Gingold-Belfer, A. Weiss, A. Geller, et al., “Increasing Serum Albumin Level Shortly After Gastrostomy Tube Insertion Pre-dicts Longer Survival in Elderly Patients with Dementia,” Journal of Clinical Gastro-enterology (July) 2016.
- O. Golan, E.-L. Marcus, “Should We Provide Life-Sustaining Treatments to Patients with Permanent Loss of Cognitive Capacities?” Rambam Maimonides Medical Journal (3/3) 2012, p. e0018.
- A. Głos, “Solidarity in Healthcare – The Challenge of Dementia,” Diametros (49) 2016, p. 1–26.
- J. Harris, The Value of Life. An Introduction to Medical Ethics, Routledge, London & New York, 1985.
- M. Hayry, “European Values in Bioethics: Why, What, and How to be Used?” Theoretical Medicine and Bioethics (24/3) 2003, p. 199–214.
- A. Jaworska, “Respecting the Margins of Agency: Alzheimer’s Patients and the Capacity to Value,” Philosophy and Public Affairs (28/2) 1999, p. 105–138.
- A.B. Jotkowitz, S. Glick, “The Israeli Terminally Ill Patient Law of 2005,” Journal of Palliative Care (25/4) 2009, p. 284–288.
- N. Kompridis, “Technology's Challenge to Democracy: What of the Human?” Parrhesia (8) 2009, p. 20–33.
- J. Kunin, “Withholding Artificial Feeding from the Severely Demented: Merciful or Immoral? Contrasts Between Secular and Jewish Perspectives,” Journal of Medical Ethics (29/4) 2003, p. 208–212.
- N. Leibovitz, “And Love Thy Neighbor as Thyself,” Iyunim – Weekly Insights on the Parasha with Commentaries by Nehama Leibovitz, URL: http://www.jewishagency.org/nechama-leibowitz/content/23890 [19.6.2016]. Leviticus 19:18.
- Lin [n.d.] – D. Lin, “What is Zen?” URL: http://www.taoism.net/articles/what_zen.htm [30.10.2016].
- L. Lotto, A. Manfrinati, D. Rigoni, R. Rumiati, G. Sartori, N. Birbaumer, “Attitudes Towards End-of-Life Decisions and the Subjective Concepts of Consciousness: An Empirical Analysis,” PLoS One (7/2) 2012, p. e31735.
- M.C. Lynch, “Is Tube Feeding Futile in Advanced Dementia?” The Linacre Quarterly (83/3) 2016, p. 283–307.
- F. Mullan, “A Founder of Quality Assessment Encounters a Troubled System Firsthand,” Health Affairs (20/1) 2001 p. 137–141.
- A. McGee, Best Interests Determinations and Substituted Judgement: Personhood and Precedent Autonomy, [in:] The Law and Ethics of Dementia, C. Foster, J. Herring, I. Doron (eds.), Hart Publishing, Oxford 2014, p. 135–147.
- S.L. Mitchell, “Advanced Dementia,” The New England Journal of Medicine (372/26) 2015, p. 2533–2540.
- S.L. Mitchell, V. Mor, P.L. Gozalo, J.L. Servadio, J.M. Teno, “Tube Feeding in US Nursing Home Residents with Advanced Dementia, 2000–2014,” Journal of the American Medical Association (316/7) 2016, p. 769–770.
- S.L. Mitchell, J.M. Teno, D.K. Kiely, et al., “The Clinical Course of Advanced Dementia,” The New England Journal of Medicine (361/16) 2009, p. 1529–1538.
- L. Nordenfelt, “The Varieties of Dignity,” Health Care Analysis (12/2) 2004, p. 69–81.
- Nuffield Council on Bioethics, Dementia: Ethical Issues, 2009, URL: http://nuffieldbioethics.org/wp-content/uploads/2014/07/Dementia-report-Oct-09.pdf [18.6.2016].
- D. Pavlovic, C. Lehmann, M. Wendt, “For an Indeterministic Ethics. The Emptiness of the Rule in Dubio Pro Vita and Life Cessation Decisions,” Philosophy, Ethics and Humanities in Medicine (4/6) 2009, DOI: 10.1186/1747-5341-4-6.
- E.D. Pellegrino, “Decisions to Withdraw Life-Sustaining Treatment: A Moral Algorithm,” Journal of the American Medical Association (283/8) 2000, p. 1065–1067.
- S.G. Post, The Moral Challenge of Alzheimer Disease: Ethical Issues from Diagno-sis to Dying, 2nd ed., Johns Hopkins University Press, Baltimore, MD 2000.
- B. Prainsack, A. Buyx, Solidarity: Reflections on an Emerging Con-cept in Bioethics, Nuffield Council on Bioethics, Arts & Humanities Research Council November 2011, URL: http://nuffieldbioethics.org/wp-content/uploads/ 2014/07/Solidarity_report_FINAL.pdf [2.6.2016].
- P. Ramsey, “The Indignity of ‘Death with Dignity’,” The Hastings Center Studies, Facing Death (2/2), 1974, p. 47–62.
- F. Rosner, “Why Nutrition and Hydration Should not be Withheld from Patients,” Chest (104/6) 1993, p. 1892–1896.
- E.L. Sampson, B. Candy, L. Jones, “Enteral Tube Feeding for Older People with Advanced Dementia,” The Cochrane Database of Systematic Reviews (2) 2009, CD007209.
- O. Sensen, “Respect Towards Elderly Demented Patients,” Diametros (39) 2014, p. 109–124.
- D.B. Schwartz, A. Barrocas, J.R. Wesley, et al., “Gastrostomy Tube Placement in Patients with Advanced Dementia or Near End of Life,” Nutrition in Clinical Practice (29/6) 2014, p. 829–840.
- M. Siegler, A.J. Weisbard, “Against the Emerging Stream: Should Fluids and Nutritional Support be Discontinued?” Archives of Internal Medicine (145/1) 1985, p. 129–131.
- M. Skog, M. Grafstrom, B. Negussie, B. Winblad, “Change of Outlook on Elderly Persons with Dementia: A Study of Trainees During a Year of Special Education,” Nurse Education Today (19/6) 1999, p. 472–479.
- J.M. Teno, P.L. Gozalo, S.L. Mitchell, et al., “Does Feeding Tube Insertion and Its Timing Improve Survival?” Journal of the American Geriatrics Society (60/10) 2012, p. 1918–1921.
- R. ter Meulen, “Solidarity and Justice in Health Care. A Critical Analysis of Their Relationship,” Diametros (43) 2015, p. 1–20.
- The Dying Patient Law, Statute Book 2039, p. 58, 14 Keslev 5766, 15.12.2005.
- The New York State Task Force on Life and the Law, When Others Must Choose. Deciding for Patients Without Capacity, 1992, URL: https://www.health.ny.gov/regulations/task_force/reports_publications/docs/when_others_must_choose.pdf [20.6.2016].
- The President's Council on Bioethics, Session 5: Aging and Care-Giving: The Ethics of Therapeutic Interventions in Patients with Advanced Dementia, Council Discussion, Prof. Meilaender, September 10, 2004, URL: http://bioethics.georgetown.edu/pcbe/transcripts/sep04/session5.html [29.5.2016].
- The President's Council of Bioethics, Taking Care: Ethical Caregiving in Our Aging Society, Chapter 5 Conclusions and Recommendations, September 2005, URL: https://bioethicsarchive.georgetown.edu/pcbe/reports/taking_care/chapter5.html [29.5.2016].
- Volkert, Chourdakis, Faxen-Irving, et al.  – D. Volkert, M. Chourdakis, G. Faxen-Irving, et al., “ESPEN Guidelines on Nutrition in Dementia,” Clinical Nutrition (34/6) 2015, p. 1052–1073.
- S.H. Wanzer, S.J. Adelstein, R.E. Cranford, et al., “The Physician’s Responsibility Toward Hopelessly Ill Patients,” The New Eng-land Journal of Medicine (310/15) 1984, p. 955-959.
- Wiki Journal Club, “Feeding Tubes in Dementia,” November 2015, URL: https://www.wikijournalclub.org/wiki/Feeding_Tubes_in_Dementia [10.9.2016].
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