To Feed or Not to Feed-- That is the Question

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n a breezy Thursday morning, in a mid-size nursing home outside of beautiful San Diego, California, a registered dietitian writes the following note in the medical record of Mrs. Marion Van Slyke, who has been diagnosed with Alzheimer's disease:
       Resident has not eaten well since admission four months ago and has suffered a 21-pound weight loss. Admission weight was 117 pounds; now weighs 96 pounds. Resident has lost 18 percent of her admission weight in past 120 days. Have attempted multiple dietary interventions without success, including a liberalized diet, between-meal supplements, appetite stimulants, multivitamin and mineral supplements, encouragement, feeding assistance, nutrition education, and high-density/high-calorie foods.
       Plan: Suggest tube feeding as an alternate means of nutrition to halt further weight loss.
       On the same Thursday afternoon, 3,000 miles away, a registered dietitian visits Mrs. Sophie Blumenthal, who has also been diagnosed with Alzheimer's disease, in a nursing home in Florida and enters the following note in the medical record:
       Resident has not eaten well since admission four months ago and has suffered a 21-pound weight loss. Admission weight was 117 pounds; now weighs 96 pounds. Resident has lost 18 percent of her admission weight in past 120 days. Have attempted multiple dietary interventions without success, including a liberalized diet, between-meal supplements, appetite stimulants, multivitamin and mineral supplements, encouragement, feeding assistance, nutrition education, and high-density/high-calorie foods.
       Plan: Since Mrs. Blumenthal has been diagnosed with an end-stage disease, tube feeding is not appropriate but will continue to offer any foods requested in addition to regular meals and supplements.
       Although both situations are fictional, both scenarios are plausible as geriatric practitioners struggle to find the answer to the tube-feeding dilemma in today's nursing homes. This topic poses not only a medical question but also moral, ethical, legal, and risk management questions.

Differing Perspectives
       You are probably thinking that if you keep reading you will be told which of the two scenarios is the correct course of action. Unfortunately, the matter is not as simple as right and wrong because the answer you receive will depend on whom you ask. The tube-feeding dilemma has many players and interested parties and can yield some highly charged discussions. Obviously, the resident and the family members are concerned about nutrition support but so are the facility healthcare team, the facility administration, the hospice team, the surveyors, the risk manager and corporate legal department, and the plaintiff attorney. With all these differing perspectives, it is easy to get swept away by someone else's agenda rather than the medical facts and individual considerations of each case. The possible combinations of factors are infinite, but here are four scenarios to consider:
       Scenario 1: A facility is due for a state survey any day. The administration would prefer not to have any problems with involuntary weight loss (IWL) during the inspection, so the administrator advises the director of nursing (DON) to "make sure everyone is eating." The DON then feels pressured to encourage tube feeding.
       Scenario 2: A resident is at peace with death and is not feeling any hunger or pain. The daughter is not ready to let her mother go and wants every intervention possible and pushes for tube feeding.
       Scenario 3: A facility recently settled a lawsuit for IWL in the presence of a nonhealing wound. They settled out of court because that was less costly than fighting the case in front of a jury. 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.
       Scenario 4: A hospice nurse has passionate feelings about compassionate end-of-life care. Her beliefs are based on her ethical and moral convictions, and she encourages comfort measures only.
       All of these motivations are real and based on real constraints and belief systems in the modern world. Money, guilt, anger, litigation, survey, census numbers, reimbursement, and a fear of death all play a part in this complex decision. But in order to clear up some of the confusion, we must get back to facts and examine the evidence.

Reasons for Tube Feeding
       Most of the residents on tube feedings in skilled nursing facilities fall into one of two groups. The first group are those who have been diagnosed with dysphagia and are deemed at high risk for aspiration pneumonia. Many residents in this group have suffered a stroke or have a neuromuscular disorder, such as Parkinson's disease. The second group is those who simply cannot or will not consume adequate nutrition to prevent IWL and malnutrition. Many of the residents in this category suffer from Alzheimer's disease or senile dementia, depression, or the end stage of a disease, such as cancer. If this was strictly a medical issue, then the questions are 1. Does tube feeding prevent aspiration? and 2. Does tube feeding prevent further malnutrition and the consequences that accompany it, such as pressure ulcers, decreased functional status, and death?
       No study has demonstrated a reduction in the incidence of aspiration pneumonia in tube-fed patients with dementia.1,2 Finucane, et al.,3 states that tube feeding cannot be expected to prevent aspiration of oral secretions, and no data has shown that it can reduce the risk from regurgitated gastric contents. What is even more confusing is the possibility that tube feeding may increase the incidence of aspiration. A study4 of 104 nursing home patients with severe dementia found that residents with feeding tubes experienced significantly more episodes of aspiration pneumonia (58 percent) than the patients without feeding tubes (17 percent; p < 0.01).
       The provision of a tube feeding to halt further nutritional and medical decline makes sense intuitively. We certainly know that nobody can survive for any length of time without nutrition. However, there are age-related changes in the metabolic machinery that may not be reversed by provision of nutrition via a tube. When the patient fails to improve despite provision of adequate protein and calories, there may be an underlying problem that is irreversible.5 Finucane3 maintains that there is little evidence to show that tube feeding demented patients has much of an effect on malnutrition and its sequelae. Dementia is a terminal disease, and artificial feeding does not lengthen the life of an end-stage dementia patient.6 Table 1 lists the symptoms that may signal the end stages are near.
       In a letter to the editor on this topic, Robinson7 makes an important point--we should not confuse the absence of proof, e.g., lack of properly controlled studies, with proof that there is no benefit. The best answer at this point is still largely unknown and unlikely to be uncovered any time soon because of the volatile atmosphere surrounding end-of-life issues in this country.
       One more confounding detail that deserves consideration is the symbolic value of tube feeding. Families may perceive tube feeding as their last means of providing care to a loved one and prolonging his or her life.8 A family member may express fear that the resident is starving or in pain. Observational studies have shown that most dying patients do not experience hunger and are satisfied with small amounts of food and liquid.8 Other quality-of-life issues to consider are nausea, vomiting, and diarrhea, which are complications that tube feedings sometimes cause. Some residents have to be restrained to prevent them from pulling on the tube. And the tube requires cleaning, flushing, and monitoring, which may bother some patients.

Recommendations
       In long-term care today, the resident's wishes should direct the care. Communication is the key. The time to begin investigating a resident's feelings toward artificial nutrition is not at the end stage of the disease. Discussion with the resident and the family members should begin as early as possible and be documented in the medical record. There should be an open and frank discussion about the pros and cons of tube feeding. The resident and family should be given adequate time to consider all the options, which is another reason this discussion should take place early in the admission. The resident and family members should be encouraged to communicate their expectations. Often, litigation arises from unrealistic expectations that never could have been met. Although it is very uncomfortable and intimidating for many of us to discuss death and end-stage diseases, it is important that we do so. At the same time, we must begin to examine our own feelings and belief systems and see where our own bias leads us.

The Final Word
       Now that we have challenged our perceptions and preconceived notions, let's return to our original scenarios and re-examine the plan of care.
       For Mrs. Van Slyke in San Diego, the dietitian determines that tube feeding is appropriate and writes the following addendum to her note:
       Plan: Have spoken with Mrs. Van Slyke and her daughter at length on three separate occasions and provided written material for them to review (see prior notes). Although Mrs.Van Slyke cannot fully understand the information at this point in her disease, earlier conversations have shown she is accepting of a tube feeding. After careful consideration, family wishes to begin a trial of tube feeding with the goal being that she will maintain her current status a while longer. They understand that tube feeding will not cure or reverse the disease and have a good knowledge of the risks and possible complications. Will suggest that a tube feeding be initiated.
       In Mrs. Blumenthal's case, the decision is made to forego tube feeding, and the dietitian enters the following plan in the medical record:
       Plan: Have spoken to resident and her family members on three occasions since admission about the possibility of tube feeding (see prior notes). Throughout her adulthood, Mrs. Blumenthal expressed her desire not to receive a tube feeding and her family wishes to respect this. Her family members fully understand both the risks and benefits of tube feeding and are all in agreement with the decision. Mrs. Blumenthal will be offered her favorite foods and all oral nutritional interventions will be maintained. Social worker will meet with family to have proper documents signed.
       So which one is the correct course of action? Mrs. Van Slyke's is the correct plan for her, and Mrs. Blumenthal's is the correct plan for her. With proper documentation, both plans will meet the needs of all the other interested parties and answer the concerns of the administrators, surveyors, and even the litigators.