Abstract
The response to feeding needs in advanced dementia patients is a subject of ethical inquiry. Advanced dementia is the debilitating result of a range of neurodegenerative diseases. As this terminal illness progresses, patients develop mild to severe dysphagia that can make swallowing difficult. Of the two available options, artificial tube feeding or oral hand feeding, an estimated one-third of these patients will receive artificial tube feeding. However, observational studies have failed to validate the clinical benefits of tube feeding. Ethics of care, the feminist philosophical perspective, and Ubuntu philosophy offer arguments for the choice of oral hand-feeding as a preferrable first option by caregivers as far as possible. These moral theories acknowledge that human beings can be dependent for long periods, mostly early and later years of life. Both views reflect an approach that draws people into a system of interdependent caring relationships. They encourage hand feeding as a way of exhibiting solidarity and respecting human dignity even at the end of life.
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Notes
We demonstrate later that “hope of recovery” is unwarranted and tube feeding does not significantly prolong life.
References
AGS. 2014. American Geriatrics Society feeding tubes in advanced dementia position statement. Journal of the American Geriatrics Society 62 (8): 1590–1593. https://doi.org/10.1111/jgs.12924.
American Geriatrics Society Ethics, and C., Clinical, P., & Models of Care, C. 2014. American Geriatrics Society feeding tubes in advanced dementia position statement. Journal of the American Geriatrics Society 62 (8): 1590–1593. https://doi.org/10.1111/jgs.12924.
Arcand, M. 2015. End-of-life issues in advanced dementia: Part 2: Management of poor nutritional intake, dehydration, and pneumonia. Canadian Family Physician 61 (4): 337–341.
Battle, M. 2000. A theology of community the ubuntu theology of desmond tutu. Interpretation 54 (2): 173–182. https://doi.org/10.1177/002096430005400206.
Behrens, K.G. 2013. Towards an Indigenous African Bioethics. The South African Journal of Bioethics and Law 6 (1): 32–35. https://doi.org/10.7196/SAJBL.255.
Behrens, K.G. 2017. A critique of the principle of ‘respect for autonomy’, grounded in African thought. Developing World Bioethics 17 (2): 126–134. https://doi.org/10.1111/dewb.12145.
Bubeck, D.E. 1995. Care, Gender and Justice. Oxford: Oxford University Press.
Bunn, D.K., A. Abdelhamid, M. Copley, V. Cowap, A. Dickinson, A. Howe, and L. Hooper. 2016. Effectiveness of interventions to indirectly support food and drink intake in people with dementia: Eating and Drinking Well IN dementiA (EDWINA) systematic review. BMC Geriatrics 16: 89. https://doi.org/10.1186/s12877-017-0443-2.
Chan, N. (2021). Here’s Why More Clinicians are Recommending Against Tube Feeding in Advanced Dementia. Retrieved from https://www.beingpatient.com/growing-consensus-against-tube-feeding-in-advanced-dementia/
Chiappero-Martinetti, E. 2014. Basic needs. In Encyclopedia of Quality of Life and Well-Being Research, ed. A.C. Michalos, 329–335. Dordrecht: Springer, Netherlands.
Christakis, N.A., and J.H. Fowler. 2014. Friendship and natural selection. Proceedings of the National Academy of Sciences 111 (Supplement 3): 10796. https://doi.org/10.1073/pnas.1400825111.
Dreyer, J.S. 2015. Ubuntu. International Journal of Practical Theology 19 (1): 189–209. https://doi.org/10.1515/ijpt-2015-0022.
Ewuoso, C., and S. Hall. 2019. Core aspects of ubuntu: A systematic review. South African Journal of Bioethics and Law 12 (2): 93–103. https://doi.org/10.7196/SAJBL.2019.v12i2.00679.
Gade, C. (2011). The Historical Development of the Written Discourses on Ubuntu 1. South African Journal of Philosophy, 30(3), 303–329. Retrieved from http://pure.au.dk/portal/files/40165256/The_Historical_Development_of_the_Written_Discourses_on_Ubuntu.pdf
Gade, C. (2012). What is Ubuntu ? Different Interpretations among South Africans of African Descent. South African Journal of Philosophy, 31(3), 484–503. Retrieved from http://pure.au.dk/portal/files/48387009/What_is_Ubuntu._Different_Interpretations_among_South_Africans_of_African_Descent.pdf
Gieniusz, M., L. Sinvani, A. Kozikowski, V. Patel, C. Nouryan, M.S. Williams, and G. Wolf-Klein. 2018. Percutaneous feeding tubes in individuals with advanced dementia: Are physicians “choosing wisely”? Journal of the American Geriatrics Society 66 (1): 64–69. https://doi.org/10.1111/jgs.15125.
Gil, E., M. Agmon, A. Hirsch, M. Ziv, and A. Zisberg. 2018. Dilemmas for guardians of advanced dementia patients regarding tube feeding. Age and Ageing 47 (1): 138–143. https://doi.org/10.1093/ageing/afx161.
Gillick, M.R. 2000. Rethinking the role of tube feeding in patients with advanced dementia. New England Journal of Medicine 342 (3): 206–210. https://doi.org/10.1056/nejm200001203420312.
Goldberg, L.S., and K.W. Altman. 2014. The role of gastrostomy tube placement in advanced dementia with dysphagia: A critical review. Clinical Interventions in Aging 9: 1733–1739. https://doi.org/10.2147/cia.s53153.
Groenhout, R. (2004). Connected lives: Human nature and an ethics of care Oxford: Rowman and Littlefiedl Publishers
Held, V. 2005. The ethics of care: Personal, political and global. London: Oxford Scholarship.
Ijaopo, E.O., and R.O. Ijaopo. 2019. Tube feeding in individuals with advanced dementia: A review of its burdens and perceived benefits. Journal of Aging Research 2019: 7272067. https://doi.org/10.1155/2019/7272067.
Metz, T. 2007a. Toward an african moral theory. Journal of Political Philosophy 15 (3): 321–341. https://doi.org/10.1111/j.1467-9760.2007a.00280.x/pdf.
Metz, T. 2007b. Ubuntu as a moral theory: reply to four critics. South African Journal of Philosophy 26 (4): 369–387. https://doi.org/10.4314/sajpem.v26i4.31495?needAccess=true.
Metz, T. 2011. The African Ethic of Ubuntu/Botho. In Moral Education in Sub-Saharan Africa, ed. S. Swarz and M. Taylor, 7–24. Routledge.
Metz, T. 2015. An African theory of social justice. In Distributive Justice Debates in Political and Social Thought: Perspectives on Finding a Fair Share, ed. C. Biosen and M. Murray. New York Routledge.
Metz, T. 2016. Recent philosophies of social protection: from capability to ubuntu. Global Social Policy 16 (2): 132–150. https://doi.org/10.1177/1468018116633575.
Metz, T. 2017. Ancillary care obligations in light of an African bioethic: From entrustment to communion. Theoretical Medicine and Bioethics 38 (2): 111–126. https://doi.org/10.1007/s11017-017-9404-1.
Metz, T. 2019. An African egalitarianism: Bringing community to bear on equality. In The Equal Society: Essays on Equality in Theory and Practice, ed. G. Hull, 185–208. Maryland: Lexington Books.
Ter Meulen, R. (2011). Ethics of care. In R. Chadwick, H. A. Ten Have, & E. M. Meslin (Eds.), The Sage Handbook of Health Care Ethics: Core and Emerging Issues. London: Sage Publications Ltd.
Meyers, D.T. 1998. Diemut Bubeck, Care, Gender and Justice, Oxford, Clarendon Press, 1995. Utilitas 10 (2): 246–249. https://doi.org/10.1017/S0953820800006130.
Miller, S.C. 2017. Reconsidering dignity relationally. Ethics and Social Welfare 11 (2): 108–121. https://doi.org/10.1080/17496535.2017.1318411.
Mitchell, S.L. 2015. Clinical practice: Advanced dementia. New England Journal of Medicine 372 (26): 2533–2540. https://doi.org/10.1056/NEJMcp1412652.
Mitchell, S.L., B.S. Black, M. Ersek, L.C. Hanson, S.C. Miller, G.A. Sachs, and R.S. Morrison. 2012. Advanced dementia: State of the art and priorities for the next decade. Annals of Internal Medicine 156 (1 Pt 1): 45–51. https://doi.org/10.7326/0003-4819-156-1-201201030-00008.
Molefe, M. 2014. Reflections on “A Report on Ubuntu.” Acta Academica 46: 157–164.
Molefe, M. (2011). What can the socio-political ethic of ubuntu contribute to contemporary conceptions of" development"? Retrieved from http://wiredspace.wits.ac.za/bitstream/handle/10539/10403/Final%20Paper.pdf?sequence=2&isAllowed=y
Murphy, J.L., J. Holmes, and C. Brooks. 2017. Nutrition and dementia care: Developing an evidence-based model for nutritional care in nursing homes. BMC Geriatrics 17 (1): 55. https://doi.org/10.1186/s12877-017-0443-2.
Muurinen, S., N. Savikko, H. Soini, M. Suominen, and K. Pitkala. 2015. Nutrition and psychological well-being among long-term care residents with dementia. The Journal of Nutrition, Health & Aging 19 (2): 178–182. https://doi.org/10.1007/s12603-014-0519-z.
Noddings, N. 1984. Caring. Berkeley: University of California Press.
Pezzati, R., V. Molteni, M. Bani, C. Settanta, M.G. Di Maggio, I. Villa, and R.B. Ardito. 2014. Can doll therapy preserve or promote attachment in people with cognitive, behavioral, and emotional problems? A pilot study in institutionalized patients with dementia. Frontiers in Psychology 5: 342–342. https://doi.org/10.3389/fpsyg.2014.00342.
Pittman, T., & Zeigler, K. (2007) Basic human needs. Millennium-journal of International Studies - MILLENNIUM-J INT STUD, 1
Ramose, M.B. 2002. The philosophy of ubuntu and ubuntu as a philosophy. In Philosophy From Africa: A Text with Readings, ed. P.H. Coetzee and A.P.J. Roux, 230–237. Oxford University Press.
Ribeiro Salomon, A.L., and Carvalho Garbi Novaes. 2015. Outcomes of enteral nutrition for patients with advanced dementia: A systematic review. The Journal of Nutrition, Health & Aging 19 (2): 169–177. https://doi.org/10.1007/s12603-014-0517-1.
Robinson, F. (1997). Globalizing care: Ethics, feminist theory, and international relations. Alternatives: Global, Local, Political, 22(1), 113–133. Retrieved from http://www.jstor.org/stable/40644882
Robinson, F. (2011) The Ethics of care: A feminist approach to human security. The Ethics of Care: A Feminist Approach to Human Security, 1–187
Schwartz, D.B. 2018. Enteral nutrition and dementia integrating ethics. Nutrition in Clinical Practice 33 (3): 377–387. https://doi.org/10.1002/ncp.10085.
Seyfarth, R.M., and D.L. Cheney. 2012. The evolutionary origins of friendship. Annual Review of Psychology 63: 153–177. https://doi.org/10.1146/annurev-psych-120710-100337.
Smith, L., and R. Ferguson. 2017. Artificial nutrition and hydration in people with late-stage dementia. Home Healthc Now 35 (6): 321–325. https://doi.org/10.1097/nhh.0000000000000550.
Solomon, M.Z., L. O’Donnell, B. Jennings, V. Guilfoy, S.M. Wolf, K. Nolan, and S. Donnelley. 1993. Decisions near the end of life: Professional views on life-sustaining treatments. American Journal of Public Health 83 (1): 14–23. https://doi.org/10.2105/ajph.83.1.14.
Tronto, J. 1993. Moral boundaries: A political argument for an ethics of care. London: Routledge.
Tutu, D. 1999. No future without forgiveness. London: Rider Random House.
Vanlaere, L., and C. Gastmans. 2011. A personalist approach to care ethics. Nursing Ethics 18 (2): 161–173. https://doi.org/10.1177/0969733010388924.
Van de Walle, G. (2019). The 5 best ways to rehydrate quickly. Retrieved from https://www.healthline.com/nutrition/how-to-rehydrate
Watson, D.D. 2013. Poverty and basic needs. In Encyclopedia of Food and Agricultural Ethics, ed. P.B. Thompson and D.M. Kaplan, 1–8. Dordrecht: Springer, Netherlands.
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Siniora, D.N., Timms, O. & Ewuoso, C. Managing feeding needs in advanced dementia: perspectives from ethics of care and ubuntu philosophy. Med Health Care and Philos 25, 259–268 (2022). https://doi.org/10.1007/s11019-022-10073-4
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DOI: https://doi.org/10.1007/s11019-022-10073-4