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Artificial nutrition and hydration at the end of life: Ethics and evidence

Published online by Cambridge University Press:  09 August 2006

LINDA GANZINI
LINDA GANZINI
Affiliation:
Departments of Psychiatry and Medicine, Oregon Health & Science University and the Mental Health Division, Portland Veterans Affairs Medical Center, Portland, Oregon
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Abstract

The case of Terri Schiavo resulted in substantial media attention about the use of artificial nutrition and hydration (ANH) especially by percutaneous endoscopic gastrostomy (PEG). In this article, I review ethical and legal principles governing decisions to choose or forgo ANH at the end of life, including issues of autonomy and decision-making capacity, similarities and differences between ANH and other medical treatments, the role of proxies when patients lack decision-making capacity, and the equivalence of withholding and withdrawing treatment. Evidence for palliative or life-sustaining benefits for ANH are reviewed in three disease processes: amyotrophic lateral sclerosis (ALS), cancer, and dementias, including Alzheimer's disease. Although more recent studies suggest a possible palliative role for ANH in ALS and terminal cancer, feeding tubes do not appear to prolong survival or increase comfort in advanced dementia of the Alzheimer's type.

Keywords

Palliative careAmyotrophic lateral sclerosisCancerAlzheimer's diseasePercutaneous endoscopic gastrostomy (PEG)
Type
Research Article
Information
Palliative & Supportive Care , Volume 4 , Issue 2 , June 2006 , pp. 135 - 143
Copyright
© 2006 Cambridge University Press

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References

REFERENCES

Ahronheim, J.C. & Gasner, M.R. (1990). The sloganism of starvation. Lancet, 335, 278–279.Google Scholar
Ahronheim, J.C. & Mulvihill, M. (1991). Refusal of tube feeding as seen from a patient advocacy organization: A comparison with landmark court cases. Journal of the American Geriatrics Society, 39, 1124–1127.Google Scholar
Barratt, J. (2004). Practical nutritional care of elderly demented patients. Current Opinion in Clinical Nutrition and Metabolic Care, 7, 35–38.Google Scholar
Beauchamp, T.L. & Childress, J.F. (1994). Principles of Biomedical Ethics, 4th ed. New York: Oxford University Press.
Berlowitz, D.R., Brandeis, G.H., Anderson, J., et al. (1997). Predictors of pressure ulcer healing among long-term care residents. Journal of the American Geriatrics Society, 45, 30–34.Google Scholar
Breitbart, W., Gibson, C., & Tremblay, A. (2002). The delirium experience: Delirium recall and delirium-related distress in hospitalized patients with cancer, their spouses/caregivers, and their nurses. Psychosomatics, 43, 183–194.Google Scholar
Bruera, E., Sala, R., Rico, M.A., et al. (2005). Effects of parenteral hydration in terminally ill cancer patients: A preliminary study. Journal of Clinical Oncology, 23, 2366–2371.Google Scholar
Burge, F.I. (1993). Dehydration symptoms of palliative care cancer patients. Journal of Pain and Symptom Management, 8, 454–464.Google Scholar
Callahan, C.M., Haag, K.M., Buchanan, N.N., et al. (1999). Decision-making for percutaneous endoscopic gastrostomy among older adults in a community setting. Journal of the American Geriatrics Society, 47, 1105–1109.Google Scholar
Carver, A.C., Vickrey, B.G., Bernat, J.L., et al. (1999). End-of-life care: A survey of US neurologists' attitudes, behavior, and knowledge. Neurology, 53, 284–293.Google Scholar
Cherniack, E.P. (2002). Increasing use of DNR orders in the elderly worldwide: Whose choice is it? Journal of Medical Ethics, 28, 303–307.Google Scholar
Ciocon, J.O., Silverstone, F.A., Graver, L.M., et al. (1988). Tube feedings in elderly patients. Indications, benefits, and complications. Archives of Internal Medicine, 148, 429–433.Google Scholar
Derr, P.G. (1986). Why food and fluids can never be denied. Hastings Center Report, 16, 28–30.Google Scholar
Edwards, N.E. & Beck, A.M. (2002). Animal-assisted therapy and nutrition in Alzheimer's disease. Western Journal of Nursing Research, 24, 697–712.Google Scholar
Fagerlin, A., Ditto, P.H., Danks, J.H., et al. (2001). Projection in surrogate decisions about life-sustaining medical treatments. Health Psychology, 20, 166–175.Google Scholar
Fainsinger, R.L., MacEachern, T., Miller, M.J., et al. (1994). The use of hypodermoclysis for rehydration in terminally ill cancer patients. Journal of Pain & Symptom Management, 9, 298–302.Google Scholar
Faxen-Irving, G., Andren-Olsson, B., af Geijerstam, A., et al. (2002). The effect of nutritional intervention in elderly subjects residing in group-living for the demented. European Journal of Clinical Nutrition, 56, 221–227.Google Scholar
Feinberg, M.J., Knebl, J., & Tully, J. (1996). Prandial aspiration and pneumonia in an elderly population followed over 3 years. Dysphagia, 11, 104–109.Google Scholar
Finucane, T.E. (1995). Malnutrition, tube feeding and pressure sores: Data are incomplete. Journal of the American Geriatrics Society, 43, 447–451.Google Scholar
Finucane, T.E. & Bynum, J.P. (1996). Use of tube feeding to prevent aspiration pneumonia. Lancet, 348, 1421–1424.Google Scholar
Finucane, T.E., Christmas, C., & Travis, K. (1999). Tube feeding in patients with advanced dementia: A review of the evidence. JAMA, 282, 1365–1370.Google Scholar
Forbes, R.B., Colville, S., & Swingler, R.J. (2004). Frequency, timing and outcome of gastrostomy tubes for amyotrophic lateral sclerosis/motor neurone disease: A record linkage study from the Scottish Motor Neurone Disease Register. Journal of Neurology, 251, 813–817.Google Scholar
Ganzini, L., Goy, E.R., Miller, L.L., et al. (2003a). Nurses' experiences with hospice patients who refuse food and fluids to hasten death. New England Journal of Medicine, 349, 359–365.Google Scholar
Ganzini, L. & Johnston, W. (2006). End of life decision making. In Amyotrophic Lateral Sclerosis, Mitsumoto, H., Przedborski, S. & Gordon, P.H. (eds.), pp. 811–824. New York: Taylor and Francis Group.
Ganzini, L., Volicer, L., Nelson, W., et al. (2003b). Pitfalls in assessment of decision-making capacity. Psychosomatics, 44, 237–243.Google Scholar
Gillick, M.R. (2000). Rethinking the role of tube feeding in patients with advanced dementia. New England Journal of Medicine, 342, 206–210.Google Scholar
Grisso, T. & Appelbaum, P.S. (1998). Assessing Competence to Consent to Treatment: A Guide for Physicians and Other Health Professionals. New York: Oxford University Press.
Howard, R.S. & Orrell, R.W. (2002). Management of motor neurone disease. Postgraduate Medical Journal, 78, 736–741.Google Scholar
Huang, Z.-B. & Ahronheim, J.C. (2000). Nutrition and hydration in terminally ill patients: An update. Clinics in Geriatric Medicine, 16, 313–325.Google Scholar
Jonsen, A.R., Siegler, M., & Winslade, W.J. (1998). Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine, 4th ed. New York: McGraw-Hill Health Professions Division.
Kaw, M. & Sekas, G. (1994). Long-term follow-up of consequences of percutaneous endoscopic gastrostomy (PEG) tubes in nursing home patients. Digestive Diseases and Sciences, 39, 738–743.Google Scholar
Lacey, D. (2005). Tube feeding, antibiotics, and hospitalization of nursing home residents with end-stage dementia: Perceptions of key medical decision-makers. American Journal of Alzheimer's Disease and Other Dementias, 20, 211–219.Google Scholar
Lawlor, P.G., Gagnon, B., Mancini, I.L., et al. (2000). Occurrence, causes, and outcome of delirium in patients with advanced cancer: A prospective study. Archives of Internal Medicine, 160, 786–794.Google Scholar
Lee, J.H., Machtay, M., Unger, L.D., et al. (1998). Prophylactic gastrostomy tubes in patients undergoing intensive irradiation for cancer of the head and neck. Archives of Otolaryngology—Head and Neck Surgery, 124, 871–875.Google Scholar
Lo, B. (1995). Resolving Ethical Dilemmas: A Guide for Clinicians. Baltimore: Williams & Wilkins.
Mazzini, L., Corra, T., Zaccala, M., et al. (1995). Percutaneous endoscopic gastrostomy and enteral nutrition in amyotrophic lateral sclerosis. Journal of Neurology, 242, 695–698.Google Scholar
McCann, R.M., Hall, W.J., & Groth-Juncker, A. (1994). Comfort care for terminally ill patients: The appropriate use of nutrition and hydration. Journal of the American Medical Association, 272, 1263–1266.Google Scholar
Mebane, E.W., Oman, R.F., Kroonen, L.T., et al. (1999). The influence of physician race, age, and gender on physician attitudes toward advance care directives and preferences for end-of-life decision-making. Journal of the American Geriatrics Society, 47, 579–591.Google Scholar
Meier, D.E., Ahronheim, J.C., Morris, J., et al. (2001). High short-term mortality in hospitalized patients with advanced dementia: Lack of benefit of tube feeding. Archives of Internal Medicine, 161, 594–599.Google Scholar
Meisel, A. (1995). Barriers to forgoing nutrition and hydration in nursing homes. American Journal of Law and Medicine, 21, 335–382.Google Scholar
Mitchell, S.L. (2003). Financial incentives for placing feeding tubes in nursing home residents with advanced dementia. Journal of the American Geriatrics Society, 51, 129–131.Google Scholar
Mitchell, S.L., Buchanan, J.L., Littlehale, S., et al. (2003). Tube-feeding versus hand-feeding nursing home residents with advanced dementia: A cost comparison. Journal of the American Medical Directors Association, 4, 27–33.Google Scholar
Mitchell, S.L., Kiely, D.K., & Hamel, M.B. (2004). Dying with advanced dementia in the nursing home. Archives of Internal Medicine, 164, 321–326.Google Scholar
Mitchell, S.L., Kiely, D.K., & Lipsitz, L.A. (1997). The risk factors and impact on survival of feeding tube placement in nursing home residents with severe cognitive impairment. Archives of Internal Medicine, 157, 327–332.Google Scholar
Mitchell, S.L., Teno, J.M., Roy, J., et al. (2003a). Clinical and organizational factors associated with feeding tube use among nursing home residents with advanced cognitive impairment. JAMA, 290, 73–80.Google Scholar
Mitchell, S.L., Tetroe, J., & O'Connor, A.M. (2001). A decision aid for long-term tube feeding in cognitively impaired older persons. Journal of the American Geriatrics Society, 49, 313–316.Google Scholar
Mitsumoto, H., Davidson, M., Moore, D., et al. (2003). Percutaneous endoscopic gastrostomy (PEG) in patients with ALS and bulbar dysfunction. Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders, 4, 177–185.Google Scholar
Monteleoni, C. & Clark, E. (2004). Using rapid-cycle quality improvement methodology to reduce feeding tubes in patients with advanced dementia: Before and after study. British Medical Journal, 329, 491–494.Google Scholar
Pasman, H.R., Onwuteaka-Philipsen, B.D., Kriegsman, D.M., et al. (2005). Discomfort in nursing home patients with severe dementia in whom artificial nutrition and hydration is forgone. Archives of Internal Medicine, 165, 1729–1735.Google Scholar
Pasman, H.R., The, B.A., Onwuteaka-Philipsen, B.D., et al. (2003). Feeding nursing home patients with severe dementia: A qualitative study. Journal of Advanced Nursing, 42, 304–311.Google Scholar
Pasman, H.R., The, B.A., Onwuteaka-Philipsen, B.D., et al. (2004). Participants in the decision making on artificial nutrition and hydration to demented nursing home patients: A qualitative study. Journal of Aging Studies, 18, 321–335.Google Scholar
Rabeneck, L., Wray, N.P., & Petersen, N.J. (1996). Long-term outcomes of patients receiving percutaneous endoscopic gastrostomy tubes. Journal of General Internal Medicine, 11, 287–293.Google Scholar
Sanders, D.S., Anderson, A.J., & Bardhan, K.D. (2004). Percutaneous endoscopic gastrostomy: An effective strategy for gastrostomy feeding in patients with dementia. Clinical Medicine, 4, 235–241.Google Scholar
Sanders, D.S., Carter, M.J., D'Silva, J., et al. (2000). Survival analysis in percutaneous endoscopic gastrostomy feeding: A worse outcome in patients with dementia. American Journal of Gastroenterology, 95, 1472–1475.Google Scholar
Senkal, M., Zumtobel, V., Bauer, K.H., et al. (1999). Outcome and cost-effectiveness of perioperative enteral immunonutrition in patients undergoing elective upper gastrointestinal tract surgery: A prospective randomized study. Archives of Surgery, 134, 1309–1316.Google Scholar
Shega, J.W., Hougham, G.W., Cox-Hayley, D., et al. (2004). Advanced dementia and feeding tubes: Do physician factors contribute to state variation? (Letter) Journal of the American Geriatrics Society, 52, 1217–1218.Google Scholar
Shega, J.W., Hougham, G.W., Stocking, C.B., et al. (2003). Barriers to limiting the practice of feeding tube placement in advanced dementia. Journal of Palliative Medicine, 6, 885–893.Google Scholar
Sieger, C.E., Arnold, J.F., & Ahronheim, J.C. (2002). Refusing artificial nutrition and hydration: Does statutory law send the wrong message? Journal of the American Geriatrics Society, 50, 544–550.Google Scholar
Siegler, M. & Weisbard, A.J. (1985). Against the emerging stream. Should fluids and nutritional support be discontinued? Archives of Internal Medicine, 145, 129–131.Google Scholar
Solomon, M.Z., O'Donnell, L., Jennings, B., et al. (1993). Decisions near the end of life: Professional views on life-sustaining treatments. American Journal of Public Health, 83, 14–23.Google Scholar
Strong, M.J., Rowe, A., & Rankin, R.N. (1999). Percutaneous gastrojejunostomy in amyotrophic lateral sclerosis. Journal of the Neurological Sciences, 169, 128–132.Google Scholar
Verhoef, M.J. & Van Rosendaal, G.M. (2001). Patient outcomes related to percutaneous endoscopic gastrostomy placement. Journal of Clinical Gastroenterology, 32, 49–53.Google Scholar
Viola, R.A., Wells, G.A., & Peterson, J. (1997). The effects of fluid status and fluid therapy on the dying: A systematic review. Journal of Palliative Care, 13, 41–52.Google Scholar
Volicer, L. & Ganzini, L. (2003). Health professionals' views on standards for decision-making capacity regarding refusal of medical treatment in mild Alzheimer's disease. Journal of the American Geriatrics Society, 51, 1270–1274.Google Scholar
Wilmot, S., Legg, L., & Barratt, J. (2002). Ethical issues in the feeding of patients suffering from dementia: A focus group study of hospital staff responses to conflicting principles. Nursing Ethics, 9, 599–611.Google Scholar