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Part II Nutrition Assessment, Consequences, and Implications

a meaningful life (49). Ethical and legal issues sur- rounding whether or not to implement aggressive nutri- tion support, such as tube or parenteral feedings, are not as simple as asking the questions “What is right?” and “What is wrong?” The answers you receive will depend on who you ask (49).

Ethical decision-making in the nursing facility is difficult, because agendas often take precedence over medical facts and individual considerations of each case. Collins identifies several possible agendas (49):

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A state survey is due any day and the nursing facility administrator would prefer not to have any problems with involuntary weight loss and advises the director of nursing to “make sure everyone is eating,” which pressures the director of nursing to encourage tube feeding.

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A client is at peace with palliative care and is not feeling pain, hunger, or thirst, yet the resident’s daughter is not ready to let her mother go and wants every intervention possible and pushes for tube feeding.

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A facility recently settled a lawsuit for involun- tary weight loss in the presence of a nonhealing wound, and the legal department believes that tube feeding might have changed the outcome of the case and issues a memo about the financial consequences of litigation.

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A hospice nurse has passionate feelings about compassionate end-of-life care and encourages comfort measures based only on personal ethical and moral convictions.

ENTERAL TUBE FEEDING

Most long-term care facility clients on tube feeding fall into one of two groups (49). The first group includes those who have been diagnosed with dysphagia and may be at high risk for aspiration pneumonia. These clients often have a neuromuscular disorder, such as Parkinson’s disease, or have had a stroke. The second group includes those who either cannot or will not consume enough nutrition to prevent involuntary weight loss and malnutrition. Many clients in this cate- gory have dementia, Alzheimer’s disease, or depres- sion or are in the end stage of a disease. Collins (49) notes that if the decision about whether to use tube feeding or not is made strictly based on medical issues, then questions such as “Does tube feeding prevent aspiration?” or “Does tube feeding prevent further mal- nutrition and the consequences that accompany it, such as pressure ulcers, decreased functional status, and death?” should provide a satisfactory answer 100% of the time. Although Finucane (50) and others (51-55) advise against tube feeding for clients with dementia,

based on the lack of evidence that tube feeding heals pressure ulcers and improves functional status, Robinson (56) suggests that the absence of proof should not be confused with proof that there is no benefit. The goals of nutrition support are to provide nutrition to patients, sustain life, and reduce discomfort related to thirst and hunger (2,14,57). Goals other than these must be decided by the patient and family in col- laboration with health care professionals.

HAND-FEEDING Hand-feeding by staff or family may provide enjoy- ment from eating and improve social satisfaction (58). Hand-feeding programs for home or for hospice or long-term care facilities can maintain and increase weight in terminally ill patients with dementia, but such programs take time and dedication (59). For care- givers, hand-feeding can also be a psychologically important act of caring. After health care professionals or family members have devoted time and effort to hand-feeding, it may be easier for caregivers to accept that when the client gives up eating, this may be the right time to allow the client to die. Those who have not been engaged in such care may be troubled by guilt if they had neither instituted tube feeding nor hand-fed the client.

BENEFITS AND BURDENS OF NUTRITION SUPPORT

As with other methods of medical treatment, deciding whether to feed or not to provide nutrition or not requires that those involved with palliative care ask the underlying questions, “What good will it accomplish for the client?” and “Do the benefits of nutrition support outweigh the burdens?” (2,60,61). To answer these questions, it is important to first establish the clinical facts of each situation and effectively commu- nicate these to the client and family. The benefits and burdens the client may experience by the provision of or the withholding/withdrawal of nutrition support should also be delineated for the client and family (2,14). The benefits and burdens identified in Box 19.6 (see page 281) can help the health care professional discuss this issue with clients and their families (2,6,14,36,57,62,63). The client’s and family’s edu- cated perspectives, based on their personal value system, should be the cornerstone of the decision-mak- ing process (2,14,64). These questions—rather than questions surrounding litigation, survey census numbers, reimbursement, guilt, anger, and fear of death—much better define the problem, examine the evidence, and contribute to a solution that best serves the client (49).