Artificial Nutrition and Hydration
ARTIFICIAL NUTRITION AND HYDRATION•••
The ability to deliver nutrition and hydration artificially is a powerful tool; in many clinical settings patient weight, nitrogen balance, visceral protein markers, and other parameters are favorably affected. While it has been difficult to document impact on survival in many clinical settings, artificial nutrition and hydration have become an essential component of multidisciplinary care in acutely ill or injured patients.
The means for providing nutrition and fluids under these circumstances are twofold. One is parenteral nutrition, called total parenteral nutrition (TPN). Fluid and nutrients are administered intravenously, most often via a large central vein accessed by a catheter placed using a minor surgical or radiological procedure. The other is enteral nutrition, in which nutrients are artificially pumped into the stomach or small intestine through a transnasal tube or ostomy (gastrostomy, jejunostomy). While nutritional goals can often be met with either method, TPN is costly and subject to complications, particularly infection. Unless precluded by medical conditions, enteral feeding is most often chosen when non-oral feeding is to be initiated.
The benefits of generally short-term nutritional support can be significant. Not surprisingly, as a result of these experiences, chronic, indefinite use of enteral feeding has been proposed for patients who have permanently lost the ability to take in adequate calories. However, the benefits of long-term enteral feeding in many settings have, for the most part, not been defined in controlled clinical trials. While observational studies with case-control or cohort design have provided insight into this area, ultimately, a decision to live with enteral tube feedings when oral intake ability has been lost or impaired becomes an individual one and personal values can be a critical variable. Advanced dementia, terminal cancer, and catastrophic neurological injury are clinical circumstances in which this option is often considered.
In the past, when long-term artificial feeding was considered, surgical gastrostomy provided enteral access. This has been largely replaced by endoscopic gastrostomy that can be performed, if necessary, at the bedside. This technique does not require general anesthesia, has less associated morbidity, and can be performed for a fraction of the cost of that for surgical techniques. Endoscopic placement, or percutaneous endoscopic gastrostomy (PEG), was first reported by Michael Gauderer in pediatric patients. It has since been adapted to many clinical situations, involving patients of all ages who are unable to eat and are thought to need nutritional support. In the Medicare population alone, PEG procedures more than doubled from 1991 to 1999, numbering more than 160,000 annually.
There are disagreements about the use of artificial nutrition and hydration (Lipman). One viewpoint favors enteral feeding in most situations in which the ability to eat and drink has been lost. After all, it is a relatively simple and straightforward process, and while there is some risk involved in providing access, it is relatively small. Many would argue that doing so is, in fact, an obligation, that food and water are basic human needs under all circumstances. They do not view feeding tubes as medical or life-sustaining therapy. Moreover, there is the concern that because food and water are often viewed as a good, withholding or withdrawing them will cause suffering, akin to the traditionally held concepts of starvation.
On the other hand, an alternative and competing concept is based on the view that this traditional position just described, while at first glance justified by the clinical circumstances, is one for which factual support is lacking. Further, there is evidence that in some clinical settings, particularly terminal conditions, artificial nutrition and hydration may actually be harmful and may add to the burden of suffering that medical providers are trying to minimize. This viewpoint also holds that in the setting of illness, forced administration of nutrition and hydration, provided artificially via alternative access to the digestive system using specially designed equipment, represents medical treatment. As such, it contrasts with oral ingestion of food and water, which provide nurture and comfort.
In view of these contrasting perspectives, it becomes necessary to consider the variables that impact on a decision about the use of artificial nutrition and hydration.
Experience in Specific Disorders
ADVANCED DEMENTIA. An extensive literature has evolved over the past several years addressing the long term use of artificial enteral feeding in patients with advanced dementia, including advanced Alzheimer's dementia, a terminal disorder. Survival is the variable most often measured. Thomas Finucane reviewed fifteen studies quantifying mortality after feeding tube placement in patients with neurogenic (including dementia) and mixed disorders. Nearly all of these studies failed to identify a survival benefit afforded by feeding tube placement. Moreover, up to 50 percent of advanced dementia patients may die within a month of PEG placement.
Finucane also reviewed available evidence about other outcome parameters: prevention of aspiration pneumonia, prevention of the consequences of malnutrition, prevention or improvement of decubitus ulcers, prevention of other infections, improvement of functional status, and improvement of patient comfort. In this review of the literature from 1966 through March 1999, there were no reports documenting improvement in any of these outcomes with tube feeding.
TERMINAL CANCER. The role of nutritional support as an adjunct to managing cancer patients, not just those with incurable disease, has long been a subject of discussion and opinion. Ten years ago, a review of the status of nutritional support in cancer patients concluded that with the possible exception of bone marrow transplantation, no benefit had been documented for any outcome parameter, including survival. In 1997 Samuel Klein summarized a conference sponsored by the National Institutes of Health (NIH) and two nutrition societies, which concluded that at least short-term enteral or parenteral support does not decrease mortality or complications in cancer patients receiving cancer therapy; no good trials of long-term support were available to analyze. The conference further noted that while one might expect nutritional support to improve quality of life, no data existed that demonstrated this. Although no trials have specifically addressed terminal cancer patients there is consensus that artificial nutrition would not be beneficial.
CATASTROPHIC NEUROLOGICAL INJURY. Supplemental nutrition is commonly provided in patients in the neurological intensive care unit, be it patients with stroke or head trauma with brain injury. Most such patients have altered consciousness and are unable to eat. Some stroke patients will have dysphagia as a manifestation of neurological injury, although many will eventually recover swallowing function. In the initial assessment of these patients, outcome cannot always be defined. Moreover, in young patients with head trauma, for example, families cannot easily accept the prospect of death or at best, permanent loss of cognitive function requiring indefinite custodial care. It is thus reasonable to implement artificial nutritional support during the acute care of patients with severe neurological injury. With failure of recovery, however, the decisions regarding long-term support, including enteral tube feedings, must at some point be confronted. At the very least, any benefits and adverse effects of continued support become items of discussion.
Devastating neurological injury from trauma or nontraumatic etiology (e.g., hypoxic encephalopathy, extensive cerebral hemorrhage or infarction) are a common cause of permanent vegetative state (PVS) in which patients may exhibit wakefulness but otherwise have no detectable awareness. These patients have been particularly visible in the public eye because of the Karen Ann Quinlan and Nancy Cruzan cases in which the courts have also played a role.
There are no trials of enteral tube feedings in patients with PVS. This disorder is different from advanced dementia, and terminal cancer in which supplemental nutrition is considered as an adjunct to management in dying patients but does not affect outcome. In PVS, it is clearly life sustaining treatment: Brain injury, this devastating, is lethal and it is only with artificial provision of nutrition and fluids, and in some cases other supportive interventions, that these patients continue to live. The mechanics of providing nutrition differ little, however, and because feeding may be indefinite, PEG is the route most often chosen.
Adverse Effects of Non-Oral Enteral Feeding
While placement of enteral feeding tubes is often taken for granted on a clinical hospital unit, complications are possible. These complications can be associated with placement itself, the mechanical effects of the tube once it has been placed, and the effects of the nutritional supplements themselves. Placement and mechanical complications, while unusual, include head and neck trauma (e.g., bleeding, infection, sinus perforation), inadvertent intubation of the tracheobronchial tree, esophagitis and esophageal stricture, and several issues related to dysfunction of these generally small caliber tubes. Many of these problems are not seen with gastrostomy or jejunostomy. However, the surgical or endoscopic procedures needed to place these tubes, while safe, have a small but measurable risk, primarily infection and, rarely, even death.
Regardless of delivery route, diarrhea and aspiration are the two most common problems that can occur when tube feeding is begun. In hospital patients, diarrhea and often incontinence occur in 25 percent of patients on general units and as many as 65 percent of patients in critical care units. The feeding solutions themselves are responsible for many of these cases. The problem is likely less in nursing homes and patients cared for at home. In most cases, instilling feeding solutions into the stomach, duodenum, or jejunum probably has little impact on the likelihood of aspiration, although reports are conflicting. Upper airway secretions are a more important variable in the risk for aspiration.
Sometimes adding to the suffering burden in dementia patients is the common need for restraints in patients with enteral feeding tubes. Restraining patients is often viewed as humiliating and demeaning, their dementia notwithstanding. In PVS patients, while pain and suffering are not experienced, indirect adverse effects such as incontinence and the requirement for diapers may jeopardize individual dignity.
Withholding Food and Water: The Patient Experience
Not surprisingly, there is little information that precisely defines the patient experience when food and water are withheld. Two aspects of this issue are worth noting, however. First, while a decision might be made to forego supplemental nutrition, oral intake will often continue. Examples are advanced dementia and terminal cancer. Either the patient will choose to eat or drink as desired, or family or providers will assist oral feeding; in this situation, a patient need is being met. The second aspect is the circumstance in which the dying patient makes a conscious decision not to eat or drink, or tube feedings are withdrawn in a patient with PVS. Are pain and suffering aggravated when food and water are withheld?
Independent of the healthcare setting, fasting does not cause physical suffering, although such individuals are presumably healthy and, in most cases, water is not withheld. Nonetheless, the prospect of going without food or water may be untenable for a healthy individual. However, in dying patients, anecdotal reports in the medical literature consistently note that they appear comfortable without food and water and even euphoria has been described. Further, urine volumes fall and respiratory and gastrointestinal secretions decrease, lessening cough, congestion, vomiting, and diarrhea. Robert McCann reported an experience with thirty-two dying cancer patients in a hospice-like setting. These patients were sufficiently aware to judge hunger and thirst, and were offered food and water as desired. Nearly two-thirds experienced neither hunger nor thirst; one-third had hunger only initially. Oral feeding as desired and/or mouth lubrication effectively met needs when they occurred and caregivers could focus on patient comfort.
The physiological basis for these effects is incompletely understood, but at least a few suggestions have been offered, based largely on both human and animal studies in which food and water are withheld. For example, accumulation of ketones, which accompanies fasting, may cause anorexia. Increased levels of salutary endogenous opioids have been found in the plasma and hypothalamus of laboratory rodents deprived of food and water. Metabolic changes that occur with dehydration can cause decreased awareness, obtundation, and coma; death follows naturally and without suffering.
There are no reports in PVS patients, but given the loss of awareness in this condition, pain and suffering are not likely to occur.
Perceptions about Artificial Feeding
Perceptions about enteral tube feedings vary, but in general, surveys of elderly patients show that the majority would not want artificial feeding were they to develop advanced dementia; these opinions were common in groups educated about the procedures involved and the adverse effects, in particular the possible need for restraint. Surveys of physicians generally support not placing feeding tubes when elderly patients, or those at end of life, are no longer eating; yet in reality feeding tubes appear to be used more often than such surveys would predict. Surrogates opt for feeding tubes more often than the patients would, but these decisions rely on an incomplete knowledge base of benefits and adverse effects.
A number of variables are likely at play in the outcome of tube feeding decisions. Historically the roots of artificial feeding are deep. For centuries, it was a foregone conclusion that food must be provided when patients were not eating. Supplemental nutrition has also been intrinsic to sound surgical management for over 100 years. Another major variable, as just noted, is poor understanding of benefits and risks. This deficit seems to be most evident in families and non-physician providers. Physician surveys suggest that these providers are knowledgeable but because tubes are placed anyway, other factors are likely at work. One is found in federal regulations for nursing homes, which require adequate nutrition for residents. However, this is not the only variable. Mildred Solomon surveyed physicians who reported acting "against their conscience" (Solomon, p. 16) in providing certain life-sustaining treatment. Others have cited a fear of litigation were a tube not to be placed. Christopher Callahan has suggested that practice patterns tend to dictate PEG placement when patients stop eating. Moreover, the underlying illness may serve as a distraction by occupying center stage such that the placement of a feeding tube is relegated to a lower priority. To completely educate patients and/or families is time consuming and it is simply easier for tube placement to be the default position when the question of supplemental nutrition arises. Often this proceeds without disclosure and hence without informed consent.
Legal Issues in Non-Oral Enteral Feeding
The controversy and concerns surrounding withholding nutrition and fluids in the clinical circumstances discussed herein have also extended to the courts. To the extent that death is predictable in a period of hours, days, or even weeks, these intellectual and emotional struggles are less intense. This is less likely to be the case in patients with terminal disorders in whom the timing of death is less certain or in PVS patients who might live for years with artificial feeding. As a result, disagreement has spilled over into the legal system. Subsequent judgments have provided legal support for the following concepts:
- Artificial feeding is medical treatment, and can be viewed on a level with other life-sustaining interventions (mechanical ventilation, dialysis, antibiotics, etc.).
- Competent patients may refuse life-sustaining treatment and this is a right also afforded to incompetent patients, particularly when there has been prior indication of this desire. State interests do not trump these rights.
- Withholding and withdrawing life-sustaining treatment, including artificial feeding, are equal under the law. There is no requirement to continue a treatment once started if the proportionality of benefits and burdens is unfavorable.
- Withholding or withdrawing life-sustaining treatment in a patient with terminal disease is neither killing nor euthanasia.
Obligations and Options in Artificial Nutrition and Hydration
A wealth of experience and a burgeoning literature, supported by sound ethical and legal principles, are questioning the appropriateness of artificial nutrition and hydration in clinical settings like the ones discussed here. (Among these are Finucane; Cillick; Lynn; Post; Slomka; Steinbrook; and Winter.) Yet many providers and laypersons are unaware, or because of personal views rooted in their own moral background, do not accept these concepts. It is important, therefore, to first educate patients and families to insure that knowledge and understanding are on an even par so that decision making may be shared. A second step is to define goals as one might with any treatment modality. Considerations include the patient's prognosis, and how feeding is expected to either positively or negatively affect the medical condition (benefits and burdens), taking into account expected life span, patient comfort, and, as applicable, any previously expressed wishes about use of life sustaining treatment. The availability of technology is coercive and constitutes a challenge to the physician; yet a recommendation to withhold or withdraw a useless, burdensome treatment can be a more caring act than any other. Nonetheless, in the event of uncertainty about prognosis, or with failure to reach a consensus, initiation of artificial feeding as a trial, for an agreed-upon time frame with defined goals, may be an appropriate option, which does not jeopardize the relationship between physician and the patient or surrogate. Decisions about continuation or withdrawal can then be made with more confidence.
Providing food for dying patients is much more likely rooted in the act of eating than in the provision of nutrition and fluid by an alternate route. While both options offer physiological benefits, oral feeding provides comfort and pleasure to the extent one wants to eat. It also respects autonomy in that one is left in control of oral intake. Assisting in this process is a nurturing act. Even thought artificial feeding may be rejected, assisted oral feeding should be considered an obligation rather than an option, as permitted by the clinical situation.
With disagreements about management that involves ethical issues for some, the institutional ethics committee can be helpful by shedding light on the pertinent issues and improving communication among the involved parties. This is a valuable resource when conflicts are looming, but also in providing support for providers and family in emotionally charged situations.
Summary and Conclusion
The symbolism associated with eating a meal, and wanting to provide nutrition when this is not possible, involves concepts that have been deeply ingrained in society for centuries. They traverse cultural boundaries. Technology affords society a relatively easy means of artificially providing food and fluids when oral intake diminishes or ceases. Thus, placing a feeding tube relieves the provider of liability concerns for not treating, and family or surrogates are relived of guilt for not feeding. Yet a tension exists. The idea of a seemingly simple way to provide food when a patient is not eating conflicts with the more ominous themes in the clinical settings considered herein of failing to benefit, adding to suffering, and using technology that may be dehumanizing and disrespectful.
Howard Brody has suggested that artificial nutrition and hydration in terminal illness may be "…a textbook case of disproportionate care, which patients may choose to forgo" (p. 740). A principlist analysis would likewise argue that both beneficence and autonomy might be in jeopardy if artificial nutrition and hydration are initiated in patients with terminal illness. Lastly, while the definition of medical futility is debatable, a physician is not obligated to provide treatment so judged; while sometimes considered an affront to autonomy, an element of paternalism may contribute to effective medical decision making, although physicians may hesitate to exercise it.
In many patients with advanced dementia, terminal cancer, and neurological devastation, artificial feeding is inappropriate. The ethical and legal basis for withholding this treatment discussed earlier is sound. While a morally pluralistic society will always generate different views because of competing value systems, the differences may not be as great as they might seem. While respecting these views, the goal of ethically sound decision making can realistically be achieved in most cases in a manner satisfactory to all.
larry d. scott
SEE ALSO: Aging and the Aged; Autonomy; Chronic Illness and Chronic Care; Clinical Ethics; Dementia; DNR; Harm; Informed Consent; Judaism, Bioethics in; Long-Term Care; Technology; Surrogate Decision-Making
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