Ethical Issues in Dysphagia Management

Abstract

Dysphagia management is complex and requires balancing individuals' preferences, quality of life, and medical consequences. Ethical challenges are not uncommon given the complexity of dysphagia. Professionals must engage in ethical reflection and shared decision-making when managing dysphagia. Recognizing one's own presuppositions and beliefs may be fundamental to ensuring an ethical approach. The goal of this article is to apply principles of ethics using hypothetical case studies of dysphagia. To this end, we will describe the challenges of working with the disorder of dysphagia; the influence of culture on decision-making about eating and feeding; the importance of information disclosure and respect for individuals' refusal of recommendations; and the interplay of ethical reflection, evidence, and clinical judgment when making complex dysphagia management decisions. These concepts should be kept in mind to ensure compassionate and competent care of the person with eating, drinking, or swallowing problems and their family caregivers.

Keywords

ethics - decision-making - consent - dysphagia - discretion

• References

• 1 Askren A, Leslie P. Complexity of clinical decision making: consent, capacity, and ethics. Semin Speech Lang 2019; 40 (03) 162-169
• 2 American Speech-Language-Hearing Association. Scope of Practice in Speech-Language Pathology. ASHA; . Available at: https://www.asha.org/policy/SP2016-00343/ . Published 2016. Accessed December 29, 2019
• 3 Counihan C, Van Esterik P. , eds. Food and Culture A Reader, 3rd ed. New York, NY: Routledge; 2013
• 4 Lisiecka D, Kelly H, Jackson J. How do people with motor neurone disease experience dysphagia? A qualitative investigation of personal experiences. Disabil Rehabil 2019; 1-10 . Doi: 10.1080/09638288.2019.1630487 [online ahead of print]
• 5 Pelletier CA. Feeding beliefs of certified nurse assistants in the nursing home: a factor influencing practice. J Gerontol Nurs 2005; 31 (07) 5-10
• 6 Singer PA, Viens AM. Textbook of Bioethics. Cambridge, UK: Cambridge University Press; 2008
• 7 Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 8th ed. New York: Oxford University Press; 2019
• 8 Horner J. Morality, ethics, and law: introductory concepts. Semin Speech Lang 2003; 24 (04) 263-274
• 9 Meisel A, Roth LH, Lidz CW. Toward a model of the legal doctrine of informed consent. Am J Psychiatry 1977; 134 (03) 285-289
• 10 Canterbury v. Spence, 464 F.2d 772, 150 U.S.App.D.C. 263 (1972)
• 11 Sharp HM. Informed consent in clinical and research settings: What do patients and families need to make informed decisions?. Perspect Swallowing Swallowing Disorders (Dysphagia) 2015; 24 (04) 130-139
• 12 American Medical Association. Informed Consent. AMA Website. Published 2020. Accessed March 1, 2020
• 13 Siegal G, Bonnie RJ, Appelbaum PS. Personalized disclosure by information-on-demand: attending to patients' needs in the informed consent process. J Law Med Ethics 2012; 40 (02) 359-367
• 14 American Speech-Language-Hearing Association. Documentation in Health Care. ASHA; . Practice Portal: Professional Issues Web site. Available at: http://www.asha.org/Practice-Portal/Professional-Issues/Documentation-in-Health-Care/ . Published 2019. Accessed December 31, 2019
• 15 Sharp HM, Bryant KN. Ethical issues in dysphagia: when patients refuse assessment or treatment. Semin Speech Lang 2003; 24 (04) 285-299
• 16 Kleinman A. The Illness Narratives. New York: Basic Books; 1988
• 17 Rattray M, Desbrow B, Roberts S. Comparing nutritional requirements, provision and intakes among patients prescribed therapeutic diets in hospital: An observational study. Nutrition 2017; 39–40: 50-56
• 18 Hedman S, Nydahl M, Faxen-Irving G. Individually prescribed diet is fundamental to optimize nutritional treatment in geriatric patients. Clin Nutr 2016; 35 (03) 692-698
• 19 Wright L, Cotter D, Hickson M. The effectiveness of targeted feeding assistance to improve the nutritional intake of elderly dysphagic patients in hospital. J Hum Nutr Diet 2008; 21 (06) 555-562 , quiz 564–565
• 20 Sackett DL, Rosenberg WM, Gray JA, Haynes RB, Richardson WS. Evidence based medicine: what it is and what it isn't. BMJ 1996; 312 (7023): 71-72
• 21 Hibbard JH, Greene J. What the evidence shows about patient activation: better health outcomes and care experiences; fewer data on costs. Health Aff (Millwood) 2013; 32 (02) 207-214
• 22 American Speech-Language-Hearing Association. Code of Ethics. ASHA; . Available at: http://www.asha.org/Code-of-Ethics/ . Published 2016. Updated March 1, 2016. Accessed December 29, 2019
• 23 Appelbaum PS, Grisso T. Assessing patients' capacities to consent to treatment. N Engl J Med 1988; 319 (25) 1635-1638
• 24 Patient Self-Determination Act of 1990. Omnibus Budget Reconciliation Act of 1990, P. L. 101–508, 42 U.S.C. 1395 cc(f) (Medicare), 1396a(w) (Medicaid)
• 25 Schloendorff v. Society of New York Hospital, 92, 211 NY 125 (1914)
• 26 Leslie P, Crawford H. The concise guide to decision making and ethics in dysphagia. Guildford, UK: J&R Press Ltd; 2017
• 27 Centers for Medicare & Medicaid Services. Medicare Benefit Policy Manual 100–02. Vol 15. Baltimore, MD: Department of Health & Human Services; 2014
• 28 Minard G. The history of surgically placed feeding tubes. Nutr Clin Pract 2006; 21 (06) 626-633
• 29 Royal College of Physicians and British Society of Gastroenterology. Oral Feeding Difficulties and Dilemmas: A Guide to Practical Care, Particularly Towards the End of Life. London: Royal College of Physicians; 2010: 1470-2118
• 30 Gomes GF, Pisani JC, Macedo ED, Campos AC. The nasogastric feeding tube as a risk factor for aspiration and aspiration pneumonia. Curr Opin Clin Nutr Metab Care 2003; 6 (03) 327-333
• 31 Fromme E. Should my loved one get a feeding tube?. J Palliat Med 2004; 7 (05) 735
• 32 Iizuka M, Reding M. Use of percutaneous endoscopic gastrostomy feeding tubes and functional recovery in stroke rehabilitation: a case-matched controlled study. Arch Phys Med Rehabil 2005; 86 (05) 1049-1052
• 33 Walker A. In the absence of food. Food Cult Soc 2005; 8 (02) 161-180
• 34 Dunlop JT. The Feeding Tube Dilemma. The Center for Bioethics & Human Dignity, Deerfield, IL: Trinity International University. . Available at: https://cbhd.org/content/feeding-tube-dilemma-key-questions . Published 2006. Accessed July 26, 2014
• 35 Teno JM, Gozalo PL, Mitchell SL. , et al. Does feeding tube insertion and its timing improve survival?. J Am Geriatr Soc 2012; 60 (10) 1918-1921
• 36 Regnard C, Leslie P, Crawford H, Matthews D, Gibson L. Gastrostomies in dementia: bad practice or bad evidence?. Age Ageing 2010; 39 (03) 282-284
• 37 Miller L, Rozin P, Fiske AP. Food sharing and feeding another person suggest intimacy; two studies of American college students. Eur J Soc Psychol 1998; 28 (03) 423-436
• 38 Bergstresser SM, Castellanos E. Feeding versus artificial nutrition and hydration: at the boundaries of medical intervention and social interaction. Int J Fem Approaches Bioeth 2015; 8 (02) 204-225
• 39 Bell K, Lee J, Ristovski-Slijepcevic S. Perceptions of food and eating among Chinese patients with cancer: findings of an ethnographic study. Cancer Nurs 2009; 32 (02) 118-126
• 40 Leslie P, Casper M. Ethical challenges: less about moral wrongdoing and more about communication breakdown. SIG 15 . Perspect Gerontol 2015; 20 (03) 72-84