The Clinical Reality of Artificial Nutrition and Hydration for the Terminally Ill
Decisions about artificial nutrition and hydration (ANH) are based upon many assumptions and possibly misperceptions. ANH is commonly associated with food and water, and because of this, it carries numerous social, cultural, and religious connotations. Many people say that withdrawing or withholding ANH from patients is unjust because it causes suffering and is equivalent to depriving food and water to someone who needs it. This stance may be true for some patients under certain circumstances. However, the clinical reality of artificial nutrition and hydration is that it may cause more physical harm than good for many patients, especially the terminally ill. Without careful consideration of the individual clinical facts, we may unintentionally harm patients out of our moral inclinations to help and protect them.
Although discussions about ANH often bring to mind the case of Terri Schiavo and the related ethical debates surrounding patients in a vegetative state, with regard to terminally ill patients in general, it is clear many people misperceive the benefits and burdens of ANH. Because ANH is commonly viewed as a simple way to feed patients, medical professionals and the wider public in the U.S. tend to overestimate its benefits for terminally ill patients.[1] Discussions between physicians, nurses, and surrogates tend to overlook the clinical impact ANH has on survival and functional recovery for the terminally ill, as well as its physical risks and burdens.[2]
Similarly, there is a misperception among some people that decisions about ANH imply two options only – to feed artificially or not to feed at all (as was the case with Terri Schiavo). However, decisions about ANH for the terminally ill do not need to be that limited.[3] Decisions may be whether to provide ANH, give food and water by hand, provide ice chips, or other options.[4] There are many considerations in this latter decision, including the overall effectiveness in feeding and hydrating the patient, and the comfort provided to them. It is not simply a question whether to try or give up on a patient (as may be commonly perceived), but which options best treat the patient’s symptoms.[5]
This essay will discuss the clinical facts regarding artificial nutrition and hydration for the most common terminally ill patients. It will discuss the benefits and burdens of ANH only in terms of the ability of ANH to nourish terminally ill patients, and the physical suffering or comfort associated with it. The intent of this essay is to highlight the importance of carefully considering ANH for terminally ill patients on an individual basis. It simply argues that medical professionals and the wider public ought to carefully distinguish between their general moral inclinations about food and water, ANH, and the actual physical needs of individual patients.
The Circumstances of the Terminally Ill Today in the United States
Defining what it means for a patient to be “terminally ill” is difficult. According to Joanne Lynn, because throughout history so many illnesses were acute and aggressive, death tended to happen quickly.[6] However, our advanced medicine and technology have transformed many acute illnesses into long-term chronic illnesses. In earlier times a single heart attack may have resulted in death in a relatively short amount of time; now a person may suffer numerous attacks and congestive heart failure over the span of many years.
Today in the United States, most patients will die from one or more diseases that have progressed over a long period of time. These patients have cancer, fatal chronic organ system failure (such as congestive heart failure or emphysema), cognitive failure (such as dementia), or a combination.[7] In fact, it is estimated that approximately 85% of Americans follow the normal course of disease progression for one or more of these diseases.[8] Such patients may be said to have a “terminal illness” when they are diagnosed, but they may not be considered a “terminal patient” until they are in the final stages of their disease.[9]
Generally speaking, ANH becomes a question for such patients when they are in the final stages of their disease.[10] The deterioration of their bodies has led to difficulties eating and swallowing.[11] In this situation living wills may take effect because patients also may have lost the ability to make or communicate their wishes.[12] This essay will refer to “terminally ill patients” in this context – when they are in the final stages of their disease, and when surrogates often have to make decisions for them.
The general public and those in medicine often feel obligated to administer ANH to terminally ill patients because of three general concerns. One is a common belief that ANH will reduce the chances of aspiration pneumonia in comparison to hand feeding. The second is the common belief that ANH will improve nutritional status; nutritional status is associated with reducing or preventing pressure ulcers and infections, improving functional status, and prolonging life. Third is the common belief that ANH will relieve hunger and thirst. Evidence of the typical outcomes for ANH in terminally ill patients does not support these common beliefs.[13]
Aspiration Pneumonia
The common belief about aspiration pneumonia is that ANH prevents regurgitating contents of digestion into the lungs more than hand feeding. The belief is that an engineered food substitute given directly to the stomach or upper intestine will be easier to digest for patients having difficulty with the first natural processes of digestion, such as chewing and swallowing. Numerous studies suggest that this belief is generally not borne out for patients with advanced illnesses.
Patients may inhale contents in the lungs from either the mouth or the stomach. ANH can do nothing to prevent inhaling mouth secretions because insertion of a tube does not affect them, and data does not suggest that a feeding tube can reduce the risk of regurgitated stomach contents either.[14] In fact, one study found that patients with difficulty chewing and swallowing had significantly fewer cases of aspiration when fed by mouth than those fed by tube.[15] Other studies have identified tube feeding itself as a risk factor of aspiration pneumonia and have demonstrated high rates of pneumonia and death in tube fed patients.[16]
Many terminally ill patients are susceptible to aspiration pneumonia. For a variety of reasons their body is not able to properly manage a nutritional regimen, whether by tube feeding or by mouth.[17] Some researchers suggest that introducing a feeding tube adds to the risk of aspiration by changing the stomach pressure and increasing the risk of stomach reflux.[18] In response, others recommend inserting the tube into the upper portion of the small intestine instead of the stomach for some patients, but research suggests that this surgical placement does not reduce the risk of aspiration either.[19] Rather, the findings appear to be consistent that tube feeding is not associated with the prevention or reduction of aspiration pneumonia over hand feeding.[20]
Nutritional Status
Both clinically and publicly there is the belief that tube feeding will improve nutritional status for terminally ill patients. Nutritional status is associated with reducing or preventing pressure ulcers and infections, improving the functional status of patients, and prolonging life.[21] The belief is that introducing nutrition will make patients stronger and able to achieve these outcomes. However, similar to perceptions about aspiration pneumonia, these perceptions are not supported by the data for tube feeding patients at the end of life.
First there is little if any evidence that tube feeding increases nutritional status by itself for many terminally ill patients.[22] Patients with problems eating frequently lose weight and develop other markers of malnutrition such as lowered serum albumin levels, lower total lymphocyte count, and impaired skin-test reactivity. Data suggests that tube feeding patients at the end of life may not improve these signs of malnutrition.[23] For example one study of patients receiving tube feeding in a long-term care facility found that although adequate calories and protein were provided, there was no improvement in serum albumin levels, total lymphocyte count, or skin-test reactivity.[24] Another study found that despite the administration of adequate calories and protein, patients still continued to lose weight and showed no signs of improvement in nutritional status.[25]
As might be expected there is little support for any of the associated effects of improved nutritional status with tube feeding as well. Overall there is inconclusive evidence whether improving nutritional status improves and prevents pressure sores, notwithstanding the use of ANH.[26] Because patients at the end stages of life tend to have limited mobility, pressure sores are always a problem.[27] Some studies suggest that tube feeding itself increases the risk of pressure sores.[28] Patients given tube feeding at the end of life are more likely to be restrained to prevent them from pulling out the tube;[29] ANH will also likely cause patients to produce more urine and stool.[30] Both restraining patients’ movement and increasing their waste production increases the prevalence of pressure sores.[31]
The same may be said for tube feeding and infections. A search conducted by Finucane, Christmas, and Travis of the medical literature over a thirty-three year period found no studies that linked tube feeding to reducing or preventing infections, such as urinary tract, viral, gastrointestinal, or eye infections.[32] On the contrary, tube feeding increases the risk of infection.[33] Nasogastric (NG) tubes can cause sinus infections and middle ear infections, and gastrostomy tubes can cause cellutis and abscess.[34] Moreover tubes can become infected with bacteria and cause numerous gastrointestinal issues and blood infections.[35]
Another common public and clinical perception is that because tube feeding provides nourishment, it makes terminally ill patients stronger and increases their chance for survival. The evidence does not support either assumption. An emaciated patient may have slower functional improvements than a patient who is not emaciated, but studies suggest that nutritional intervention at the end of life may not make a difference.[36] One study in particular found that nursing home residents showed no improvement in muscle strength or function after they were given a feeding tube.[37] Another study, although not done on feeding tubes, found that oral protein supplements alone did not improve measures of strength or function in nursing home residents without exercise training.[38] This latter study suggests that patients must already have a certain amount of strength if they are going to benefit from nutritional intake. Nutritional intake by itself is ineffective for the frailest patients.[39]
Perhaps the most prevalent perception with regard to nutritional status and feeding tubes is that tube feedings will prolong life. Notwithstanding ethical debates, evidence suggests that tube feeding does not prolong the life of many terminally ill patients.[40] In a retrospective study of nursing home residents that adjusted for age, history of pulmonary aspiration or stroke, functional state, and cognitive status, there was no difference in survival between groups with and without feeding tubes.[41] A separate analysis of nursing home patients with chewing and swallowing problems found a significant decrease in the length of survival for tube-fed patients than for those who were not tube-fed.[42] Other studies give similar results regarding negligible physiological benefits of ANH.[43] Given these findings, some healthcare professionals conclude that with regard to prolonging life, tube feeding for many patients at the end of life is not clinically indicated.[44]
Palliation for Hunger and Thirst
Finally many people in the general public and the medical community often feel a sense of guilt and injustice for depriving terminally ill patients of tube feeding because they believe that they will cause patients to suffer from hunger and thirst. There are a few facts to consider that do not support this belief. Many physicians say that hunger and thirst do not contribute to suffering for a patient who is unable to eat or drink.[45] The chemical processes that occur in the body due to the lack of nutrients and hydration typically reduce the feelings of hunger and thirst.[46]
A few studies confirm these reports. One study found that a majority of terminally ill patients with anorexia, (primarily with cancer or stroke) did not experience hunger or thirst.[47] For those who did, relief was achieved with very small amounts of food, ice chips, and lip lubrication.[48] In another study of patients with Amyotrophic Lateral Sclerosis (ALS) and difficulties swallowing, tube feedings not only increased occurrences of aspiration pneumonia and failed to decrease feelings of hunger and thirst, they increased feelings of hunger and nausea.[49] Other literature concludes from conversations with cancer patients that hunger and thirst cease within a few days of oral intake.[50]
In studies of individuals without terminal illnesses who voluntarily fasted, the body responds to protein malnutrition and dehydration by increasingly deriving energy from breaking down fats.[51] This fat breakdown leads to the production of a class of chemical compounds called ketones, which serve as an energy source for the body. The result of this ketone production is that the body does not break down muscle for energy.[52] In contrast, in advanced cancer patients who receive nutritional intake, their ailing body may use amino acids from their own muscles to supplement the nutrition.[53] This process may lead to muscle breakdown.[54] In this respect it is sometimes better for the body of a dying patient to utilize its own resources rather than to receive nutrition.[55]
Part of the perception about suffering from hunger and thirst at the end of life may come from conflating nutritional needs with pain and symptom management. It is natural to think that hunger and thirst are signs that a person needs nutrition and hydration, and food and water are basic goods that should be provided to all patients. However, a terminally ill patient who feels hungry or thirsty may not need substantial nutrients or hydration.[56] They might only need enough water or food to treat their symptoms, if they need any at all.[57] Treating their nutritional needs might escalate their pain and suffering.[58] Studies have shown that aggressive nutrition can feed and grow a tumor, and aggressive hydration can cause pulmonary edema.[59]
In contrast, as body fluids decrease during the dying process, patients who are not aggressively treated with nutrition and hydration may experience a decrease in coughing and congestion due to reduced secretions.[60] In such cases, ice chips, very small amounts of food, etc. are the clinically appropriate treatment, not artificial nutrition and hydration.[61] In other cases patients are most comfortable if they are not given anything.[62] Sometimes even small amounts of food given by hand may exacerbate hunger rather than relieve it.[63] Ultimately the goal for terminally ill patients is to treat their symptoms. If patients are suffering from hunger or thirst, there a variety of ways to address it; artificial nutrition and hydration is not always the best way.