Nutrition & Hydration: End of Life Issues

Alzheimer’s disease (AD) is a form of incurable, progressive dementia leading gradually to complete loss of cognitive function, inability to participate in activities of daily living and subsequent death. Eventually there is an inability to maintain oral nutrition and hydration due to difficulty swallowing and/or cognitive function. Weight loss occurs and artificial nutrition and hydration is usually considered by the patient’s family when the patient hasn’t already made their end-of-life wishes known by a Living Will.

Artificial nutrition and hydration, or tubefeeding, is among the most difficult end-of-life decisions to make, especially when individuals have different opinions about it. These decisions are complicated by misunderstandings about likely benefits and burdens of tubefeeding, concern about patient suffering, and the uncertainty regarding the moral issues when someone stops eating.^[1] Eating and drinking are fundamental and symbolic processes of life and families will often mistakenly equate withdrawal or withholding of food with starvation. Studies show however that the lack of hunger and thirst that occurs actually promotes increased comfort during the dying process.^{[2, 3, 4, 5]} There is little evidence that tube feedings prolong life, improve comfort, or reduce aspiration pneumonia or other infections. ^{[6, 7, 8, 9]} If a decision is made to begin tubefeeding, a time frame for re-evaluation should be established to determine if the goals of feedings are being met (i.e. weight gain, improved function). If goals are not met, discontinuing tubefeeding may be considered. ^[10]

An open discussion with patients and their families about advance directives and a honest depiction about the progressive and degenerative nature of the disease should follow a diagnosis of Alzheimer’s disease. Advance directives should be completed ideally when Alzheimer’s is first diagnosed.^[11] In New York State, the best way to ensure that health care wishes are known and honored is to use one or more of the following legal documents, sometimes referred to as “Advanced Directives”. Advanced Directives will speak for a person when they are unable to speak for themselves. There are four types of Advanced Directives but only two are necessary for food and nutrition concerns: a Health Care Proxy and Living Will. A Health Care Proxy lets a person appoint a healthcare agent, someone they trust to make health care decisions for them. A Living Will allows a person to leave written instructions that explain their health care wishes, especially about end-of-life care. The proxy’s authority to make decisions based on the Living Will begins only when two doctors determine that a person has lost the capacity to make decisions for themselves. ^[12]

Decisions about accepting or forgoing artificial nutrition and hydration, if they have not already been made, tend to be in haste, late in the game, and without knowledge of the natural dying process and the burdens of tubefeeding. The professional literature suggests that forgoing tubefeeding is an entirely appropriate decision at the end of life. Focusing on the disease process as the cause of death may help the families provide optimal end-of-life care for their loved one. ^{[13, 14]}

Potential Benefits of Artificial Nutrition/Hydration
(Psychological benefits for family members & caregivers):

• Maintain appearance of life-giving sustenance
• Maintain hope for future cognitive improvement
• Removal/avoidance of guilt

Unproven Benefits of Artificial Nutrition/Hydration
(no medical evidence to prove it will meet the following goals):

• Reduction in aspiration pneumonia
• Reduction in patient suffering
• Reduction in infections or skin breakdown
• Improved survival duration

Burdens of Artificial Nutrition/Hydration
(no medical evidence to prove it will meet the following goals):

• Risk of aspiration pneumonia is the same or higher
• Increased needs to use physical restraints
• Wound infections
• Abdominal pain and tube-related discomfort
• Cost
• Indignity

You can get more information about Health Care Proxies and other Advanced Directives by attending the
Legal and Financial Planning Seminars sponsored by the NYC Chapter.

To get a standard Health Care Proxy form approved under New York State law
please visit: www.oag.state.ny.us/health/proxy_form.pdf or
www.health.state.ny.us/professionals/patients/health_care_proxy/intro.htm.

There is no standard Living Will form.
You can obtain a free Living Will form from www.caringinfo.org/stateaddownload.com.

— Linnea Matulat, MS, RD, CDN
Nutritionist
God’s Love We Deliver

References sited:

1. Daly, B. J. (2000, September). Special challenges of withholding artificial nutrition and hydration. Journal of Gerontological Nursing, 26 (9), 25-31.
2. Mion, L.C, & O’Connell, A. (2003, May/June). Personal hydration and nutrition in the geriatric patient. Journal of Infusion Nursing, 26 (3), 144-152.
3. Slomka, J. (2003, June). Withholding nutrition at the end of life: Clinical and ethical issues. Cleveland Clinic Journal of Medicine, 70 (6), 548-552.
4. Hanna, E, & Joel, A. (2005, October). End-of-life decision making, quality of life, enteral feeding, and the speech-language pathologist. Swallowing and Swallowing Disroders, 13-18.
5. Scott, L. D. (2005). The PEG “consult”. American J Gastroenterology, 100, 740-743.
6. Slomka, op. cit.
7. Fritz, M. (2005, December 8). “How simple device set off a fight over elderly care.” The Wall Street Journal.
8. Mion, op.cit.
9. Smith, S., & Andrews, M. (2000, October). Artificial nutrition and hydration at the end of life. Medsurg Nursing, 9 (5), 233-247.
10. Non-oral hydration and feeding in advanced dementia or at the end of life: Guidelines for physician staff. Froedtert Hospital, Milwaukee, Wisconsin. http://www.capc.org/tools-for-palliative-care-programs/clinical-tools/policies-procedures/non-oral-hydration.pdf.
11. Rempusheski, V. F., & Hurley, A. C. (2000, October). Advance directives and dementia. Journal of Gerontological Nursing, 26 (10), 27-34.
12. State of New York, Office of the Attorney General. Planning your health care in advance: How to make your end-of-life wishes known and honored.
13. Slomka, op.cit.
14. Hoefler, J.M. (2000, April). Making decisions about tube feeding for severely demented patients at the end of life: clinical, legal, and ethical considerations. Death Studies, 24 (3), 233-254.

This is the 8th in a series of articles on the nutritional and feeding needs of persons with AD.

Linnea Matulat is a Nutritionist at GLWD, a non-profit agency in NYC that provides meals to men, women and children affected by HIV/AIDS, Cancer, AD and many other serious illnesses who are unable to shop or prepare meals for themselves. The agency’s team of experienced nutritionists also provides nutrition education, information and counseling in individual and group sessions to clients, their caregivers and other service providers. In partnership with GLWD, the NYC Chapter is pleased to offer this service to persons with dementia and their families. For information, please call the Chapter's 24-hour Helpline at 800-272-3900.

To obtain more individualized nutrition information, the nutrition department of GLWD can be reached at 212-294-8103 or 1-800-747-2023 or by visiting www.glwd.org.

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