Ethical Issues in Dysphagia: When Patients Refuse Assessment or Treatment

ABSTRACT

The primary goal of intervention for patients with dysphagia is to restore oral feeding. When patients are unable to achieve adequate nutrition, hydration, or safety with oral feeding, then nonoral approaches are often recommended. Although patients' rights to accept or refuse clinical recommendations are widely recognized, when a patient refuses tube feeding or other recommendations, dysphagia specialists are left with a host of practical questions about their role in caring for the patient. We review the criteria for assessing patients' capacity to make informed choices, approaches to decision making when patients lack capacity, and the roles and responsibilities of clinicians when patients choose high-risk treatment options.

KEYWORDS

Deglutition disorders - enteral nutrition - clinical decision making - advance directives - withholding and withdrawing treatment

REFERENCES

• 1 Omnibus Budget Reconciliation Act of 1990 Pub Law 101-508, §4206, 4751 . 
• 2 Beauchamp T L, Childress J F. Principles of Biomedical Ethics, 5th ed. New York: Oxford 2001
• 3 Jonsen A R, Siegler M, Winslade W J. Clinical Ethics, 4th ed. New York: McGraw-Hill 1998
• 4 Lo B. Resolving Ethical Dilemmas: A Guide for Clinicians, 2nd ed. Philadelphia: Lippincott Williams & Wilkins 2000
• 5 Berg J W, Appelbaum P S, Lidz C W, Parker L S. Informed Consent: Legal Theory and Clinical Practice. New York: Oxford 2001
• 6 American Speech-Language-Hearing Association. Roles of Speech-Language Pathologists in Swallowing and Feeding Disorders: Technical Report. Rockville, MD: Author 2001
• 7 Logemann J A. Evaluation and Treatment of Swallowing Disorders.  Austin, TX: Pro-Ed; 1998
• 8 Gauderer M. Twenty years of percutaneous endoscopic gastrostomy: origin and evolution of a concept and its expanded applications.  Gastrointest Endosc . 1999;  50 879-883
• 9 Feinberg M J, Knebl J, Tully J, Segall L. Aspiration in the elderly.  Dysphagia . 1990;  5 61-71
• 10 Finucane T E, Christmas C, Travis K. Tube feeding in patients with advanced dementia: a review of the evidence.  JAMA . 1999;  282 1365-1370
• 11 Haddad R Y, Thomas D R. Enteral nutrition and enteral tube feeding: review of the evidence.  Clin Geriatric Med . 2002;  18 867-881
• 12 Post S G. Tube feeding and advanced progressive dementia.  Hastings Cent Rep . 2001;  31 36-42
• 13 Winter S M. Terminal nutrition: framing the debate for the withdrawal of nutritional support in terminally ill patients.  Am J Med . 2000;  109 723-726
• 14 Kuhlemeier K V, Yates P, Palmer J B. Intra- and interrater variation in the evaluation of videofluorographic swallowing studies.  Dysphagia . 1998;  13 142-147
• 15 McCullough G H, Wertz R T, Rosenbek J C, Mills R H, Webb W G, Ross K B. Inter- and intrajudge reliability for videofluoroscopic swallowing evaluation measures.  Dysphagia . 2001;  16 110-118
• 16 Scott A, Perry A, Bench J. A study of interrater reliability when using videofluoroscopy as an assessment of swallowing.  Dysphagia . 1998;  13 223-227
• 17 Callahan C M. Outcomes of percutaneous endoscopic gastrostomy among older adults in a community setting.  Am J Geriatr Soc . 2000;  48 1048-1054
• 18 Rabeneck L, McCullogh L B, Wray N P. Ethically justified, clinically comprehensive guidelines for percutaneous endoscopic gastrostomy tube placement.  Lancet . 1997;  349 496-498
• 19 Marik P E. Primary care: aspiration pneumonitis and aspiration pneumonia.  N Engl J Med . 2001;  344 665-671
• 20 Ciocon J O, Silverstone F A, Graver L M, Foley C J. Tube feedings in elderly patients.  Arch Intern Med . 1998;  148 429-443
• 21 Cogen R, Weinryb J. Aspiration pneumonia in nursing home patients fed via gastrostomy tubes.  Am J Gastroenterol . 1989;  84 1509-1512
• 22 Finucane T E, Bynum J PW. Use of tube feeding to prevent aspiration pneumonia.  Lancet . 1996;  348 1421-1424
• 23 Mamel J J. Percutaneous endoscopic gastrostomy.  Am J Gastroenterol . 1989;  84 703-710
• 24 Olivares L, Segovia A, Revuelta R. Tube feeding and lethal aspiration in neurological patients: a review of 720 autopsy cases.  Stroke . 1974;  5 654-657
• 25 Rabeneck L, Wray N P, Petersen N J. Long-term outcomes of patients receiving percutaneous endoscopic gastrostomy tubes.  J Gen Intern Med . 1996;  11 287-293
• 26 Raha S K, Woodhouse K. The use of percutaneous endoscopic gastrostomy (PEG) in 161 consecutive elderly patients.  Age Ageing . 1994;  23 162-163
• 27 Hlatky M A. Patient preferences and clinical guidelines.  JAMA . 1995;  273 1219-1220
• 28 Schloendorff v Society of New York Hospital, 105 NE 92 (NY 1914) . 
• 29 American Academy of Pediatrics. Informed consent, parental permission, and assent in pediatric practice.  Pediatrics . 1995;  95 314-317
• 30 National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research Washington, DC: DHEW Publication OS 78-0112 1978
• 31 Karlawish J HT, Quill T, Meier D E. A consensus-based approach to providing palliative care to patients who lack decision-making capacity.  Ann Intern Med . 1999;  130 835-840
• 32 Bouvia v Superior Court, 179 Cal App 3d 1127, 225 Cal Rptr 297 (Ct App Cal 2d 1986) . 
• 33 Cruzan v Director, Missouri Department of Health, 497 US 261 (1990) . 
• 34 Fischer G S, Tulsky J A, Rose M A, Siminoff L A, Arnold R M. Patient knowledge and physician predictions of treatment preferences after discussion of advance directives.  J Gen Intern Med . 1998;  13 447-454
• 35 Sachs G A, Stern R, Cox D M, Hougham G, Sachs R S. Ethical aspects of dementia research: informed consent and proxy consent.  Clin Res . 1994;  42 403-412
• 36 Tsevat J, Cook E F, Green M L. et al . Health values of the seriously ill: SUPPORT investigators.  Ann Intern Med . 1998;  122 514-520
• 37 Bascom P B, Tolle S W. Responding to requests for physician-assisted suicide: “These are uncharted waters for both of us .  . . “ JAMA . 2002;  288 91-98
• 38 Boyd N F, Sutherland H J, Heasman K Z, Tritchler D L, Cummings B J. Whose utilities for decisions analysis?.  Med Decision Making . 1990;  10 58-76
• 39 Sharp H M, List M, MacCracken E, Stenson K, Stocking C, Siegler, M. Patients' priorities among treatment effects in head and neck cancer: evaluation of a new assessment tool.  Head Neck . 1999;  21 538-546
• 40 Stein J. The ethics of advance directives: a rehabilitation perspective.  Am J Med Rehab . 2003;  82 152-157
• 41 Grisso T, Appelbaum P S. Assessing Competence to Consent to Treatment: a Guide for Physicians and Other Health Care Professionals.  New York: Oxford; 1998
• 42 Lo B. Assessing decision-making capacity.  Law Med Health Care . 1990;  18 193-201
• 43 Weir R F, Peters C. Affirming the decisions adolescents make about life and death.  Hastings Cent Rep . 1997;  27 29-40
• 44 Appelbaum P S, Grisso T. Assessing patients' capacities to consent to treatment.  N Engl J Med . 1988;  319 1635-1638
• 45 Sullivan M D, Youngner S J. Depression, competence, and the right to refuse lifesaving medical treatment.  Am J Psychiatry . 1994;  151 971-978
• 46 Tavalaro J, Tayson R. Look Up for Yes.  New York: Kodansha America; 1997
• 47 Brady Wagner C L. Clinical ethics in the context of language and cognitive impairment: rights and protections.  Semin Speech Lang . 2003;  24 275-284
• 48 National Conference of Commissioners on Uniform State Laws. Uniform Health-Care Decisions Act; 1993.  Available at: http://www.law.cornell.edu/ uniform/vol9.html. Accessed March 1 2003
• 49 Orentlicher D. Advance medical directives.  JAMA . 1990;  263 2365-2367
• 50 Lo B, Dornbrand L, Wolf L E, Groman M. The Wendland case: withdrawing life support from incompetent patients who are not terminally ill.  N Engl J Med . 2002;  346 1489-1493
• 51 Meier D E, Fuss B R, O'Rourke D, Baskin S A, Lewis M, Morrison R S. Marked improvement in recognition and completion of health care proxies: a randomized control trial of counseling by hospital patient representatives.  Arch Intern Med . 1996;  156 1227-1232
• 52 Rubin S M, Strull W M, Fialkow M F, Weiss S J, Lo B. Increasing completion of the durable power of attorney for health care: a randomized controlled trial.  JAMA . 1994;  271 209-212
• 53 Schneiderman L J, Kronick R, Kaplan R M, Anderson J P, Langer R D. Effects of offering advance directives on medical treatments and costs.  Ann Intern Med . 1992;  117 599-606
• 54 Sulmasy D P, Song K Y, Marx E S, Mitchell J M. Strategies to promote the use of advance directives in a residency outpatient practice.  J Gen Intern Med . 1996;  11 657-663
• 55 Morrison R S, Olson E, Mertz, K R, Meier D E. The inaccessibility of advance directives on transfer from ambulatory to acute care settings.  JAMA . 1995;  274 478-482
• 56 Iowa Code 1999 Supplement, §144A.3, 144A.4 Available at: http://www.legis.state.ia.us/cgi-bin/ IACODE/Code1999 SUPPLEMENT. Accessed August 28, 2003
• 57 Kohut N, Sam M, O'Rourke K, MacFadden D K, Salit I, Singer P A. Stability of treatment preferences: although most preferences do not change, most people change some of their preferences.  J Clin Ethics . 1997;  8 124-135
• 58 Illinois Public Act 92-0364 (1991). Available at http://www.legis.state.il.us/legislation/publicacts/pubact92/acts/92-0364.html. Accessed March 1, 2003
• 59 Meier D E, Morrison R S. Autonomy reconsidered. N Engl J Med .  2002;  346 1087-1089
• 60 Ruark J E, Raffin T A, Stanford University Medical Center Committee on Ethics. Initiating and withdrawing life support: principles and practice in adult medicine.  N Engl J Med . 1988;  318 25-30
• 61 Edwards M J, Tolle S W. Disconnecting a ventilator at the request of a patient who knows he will then die: the doctor's anguish.  Ann Intern Med . 1992;  117 254-256
• 62 Solomon M Z, O'Donnell L, Jennings B. et al . Decisions near the end of life: professional views on life-sustaining treatments.  Am J Pub Health . 1993;  83 14-23
• 63 In re Martin, 450 Mich 204; 538 NW 2d 399 (Mich 1995) . 
• 64 Wendland v Wendland, 26 Cal 4th 519, 28 P 3d 151 (Cal 2001) . 
• 65 Miller F G, Meier D E. Voluntary death: a comparison of terminal dehydration and physician assisted suicide.  Ann Int Med . 1998;  128 559-562
• 66 Singer P A, Siegler M. Elective use of life-sustaining treatment in internal medicine.  Adv Intern Med . 1991;  36 57-79
• 67 Bartling v Superior Court, 163 Cal App 3d 186, 195, 209 Cal Rptr 220 (Cal Ct App 2d 1984) . 
• 68 McCann R M, Hall W J, Groth-Junker A. Comfort care for terminally ill patients: the appropriate use of nutrition and hydration.  JAMA . 1994;  272 1263-1266