Dr. Milkes is Fellow, Gastroenterology and Hepatology, Stanford University Medical Center, and reports no commercial conflict of interest.
Most of us know it as "tube feeding." Doctors call it percutaneous endoscopic gastrostomy (PEG). Compared with most kinds of surgery, it is a safe, uncomplicated and almost routine procedure. But simple or not, PEG is the focus of some extremely complex legal and ethical questions. Why?
Because unlike nearly every other method of feeding, PEG feeding does not require the cooperation or consent of the person being treated. In effect, PEG is a form of forced feeding.
Since their development a quarter century ago at the Rainbow Babies and Children's Hospital in Cleveland, PEG tubes have become widely used. Originally designed to provide nourishment to children who were unable to swallow because of neurological problems, PEG tubes are now frequently used in adults who have diseases or conditions that make it difficult to swallow or eat voluntarily.
Most patients receiving PEGs are elderly — between 1988 to 1995, the number of elderly hospitalized patients undergoing the procedure increased from 61,000 to 121,000. Though the procedure is fairly routine medically, there are many complex issues surrounding PEG use, particularly for patients near the end of life, where the decision to use or not to use a PEG is frequently made without the participation of the patient.Patients should not be subjected to a PEG unless they are expected to require feeding for greater than 30 days. Those with a life expectancy of less than 30 days or who will only require short-term feeding should be fed via a nose, or nasogastric feeding tube.
The ethical picture is further clouded by several studies that question the medical benefit of PEGs in elderly demented patients, a group that receives a high percentage of the PEG procedures currently done. Other studies have found a surprisingly high death rate for these patients within one month of being given a PEG.
For all of these reasons, it is important for patients, friends and family to have a full discussion with their doctor before any decision is made about using a PEG. The goal should be a clear understanding of the medical goals and moral reasons for going ahead with a PEG placement.
The Surgical Procedure
Local anesthesia is used to numb the throat. A flexible, lighted instrument called an endoscope is threaded to the stomach through the mouth, throat and esophagus. A skin incision is made through the abdomen and a needle introduced into the stomach. A snare is passed down the endoscope in order to capture a wire or suture that has been placed through the needle. A feeding tube, through which food will be sent directly into the stomach, is advanced over the wire into the stomach. Feedings can be started as soon as the next day.
What Are PEGs For?
In general, PEGs are placed to provide nutrition for patients who cannot or will not eat, and who have a normally functioning gastrointestinal tract. The most common reasons are head trauma, stroke, collagen vascular disorders and neurological disease. Other reasons include obstruction caused by head, neck or esophageal cancers. Depressed patients who refuse to eat may also benefit from tube feedings while their underlying psychiatric problems are treated.
Patients should not be subjected to a PEG unless they are expected to require feeding for greater than 30 days. Those with a life expectancy of less than 30 days or who will only require short-term feeding should be fed via a nose, or nasogastric feeding tube. The reason for this is to spare patients with a grave prognosis or limited need for tube feedings the expense and risk of an unnecessarily invasive procedure.
Medical Complications of PEGs
The complications occurring with PEG placement can be divided into minor and major categories (see Table 1).
Table 1.
Complications from PEG.
| Minor (7-10% incidence) | Major (1-2% incidence) |
|---|---|
|
|
Most complications are minor and occur in approximately 5-10% of cases. Usually, these consist of easily treatable and uncomplicated wound infections, bleeding or abdominal pain.
PEGs can become clogged. Accidental or deliberate removal of the tube by the patient is another common complication. Patients may require restraints in order prevent them from pulling on the tube.
Major complications are rare, occurring in only 1-2% of cases. The overall mortality rate of PEG procedures is 0.3-1%. The risk of death increases markedly with age.
Infection is a rare, though a potentially serious complication. Even rarer complications are severe bleeding and intestinal obstruction.
PEGs and the Law
Starting with the case of Karen Ann Quinlan in 1976, the United States courts have spoken loud and clear about the use of life-sustaining treatments and artificial nutrition and hydration. The courts have repeatedly upheld the principle that competent patients may refuse or withdraw any medical treatment, even if that treatment is necessary to sustain life.
In the Nancy Cruzan case in 1990, the majority ruling of the U.S. Supreme Court held that there is no difference between the termination of artificial nutrition and hydration, and other forms of treatment. Furthermore, the American Medical Association, a President's Commission and almost every appellate court decision have agreed that artificial nutrition and hydration is a form of medical treatment that may be legally refused. Competent patients have the legal right to refuse tube feedings.The American Medical Association, a President's Commission and almost every appellate court decision have agreed that artificial nutrition and hydration is a form of medical treatment that may be legally refused. Competent patients have the legal right to refuse tube feedings.
But what about patients who cannot express their own wishes? In the Quinlan case, the court determined that family members may refuse life-support on behalf of an incompetent patient. Only two states, New York and Missouri, have strict requirements that surrogate decision-makers present "clear and convincing" evidence that the patient, if he or she were competent, would not have wished artificial nutrition and hydration given their present medical condition. Courts have recognized written statements and conversations with family and friends as constituting "clear and convincing" evidence.
To assist physicians and families in making medical decisions for incompetent patients, most state legislatures have passed laws allowing advance directives to be honored. An advance directive is a statement that a person makes, while competent, expressing their wishes about treatment in the future, should they lose the capacity to make decisions. It may provide written instructions about treatment (a living will) or may designate another person to make treatment decisions (a proxy or durable power of attorney).
All health care facilities receiving Medicare or Medicaid are legally obligated to provide their patients with written information about their rights to accept or refuse medical treatments. Patients admitted to these facilities must be provided the opportunity to complete advance directives. In cases where no family member or legal instrument are available to determine the wishes of an incompetent patient, physicians generally err in the direction of preserving life as long as the anticipated benefits of treatment outweigh the burdens.
Although each state has its own set of laws about terminating life-support, there is usually nothing to prevent tube feedings from being legally withdrawn after they have been initiated. With the exception of Illinois, no state requires a physician to seek a court order to withhold or withdraw tube feedings. Rather, the courts overwhelmingly favor allowing such personal and emotional issues be dealt with directly by family and through the physician-patient relationship.
Whatever the law has to say, withholding or removing tube feeding can be ethically difficult and emotionally wrenching.
Ethical Issues
Patient autonomy is a strongly accepted and protected principle of medical ethics. This principle was stressed in the drafting of the Nuremberg Code in 1947, which sought to protect patients from unwanted medical procedures. According to the principle of autonomy, patients have the right to decide their medical treatment and medical treatments may not be imposed.
To protect patient autonomy, informed consent must be obtained prior to performing an invasive procedure. Informed consent insures that the patient understands the risks, benefits and alternatives to a procedure in advance. This applies as well to PEG placement.
In situations where the patient lacks the capacity to make medical decisions, physicians need to help families and health care proxies make decisions based upon the patient's values and not their own. A doctor may ask, "If your father could tell us whether or not he would want a PEG, what would he say?" or "Did your father ever express an opinion about life-support or artificial food and hydration?" The goal of this kind of questioning is to identify the patient's values and wishes, which may differ from those of his or her family.
There are two basic value systems regarding artificial food and hydration that are commonly encountered. Some people, perhaps based on religious beliefs, regard all life as valuable and worth preserving. They may choose to continue artificial food and hydration no matter what their clinical condition because without food and water they would surely die.
On the other hand, others may value the quality of life preserved over the quantity of life preserved. They may regard clinical conditions such as a permanent vegetative state as lacking a sufficient quality of life to be preserved. They may view the provision of artificial food and hydration as merely prolonging unnecessary suffering. If the intent of withholding artificial food and hydration is to relieve suffering, they may feel it is justified and humane.
Once there has been a decision to place a PEG tube, patients and family members can continue to discuss the ethics of continuing vs. stopping tube feeding. Most ethicists believe that the distinction between withdrawing and withholding life-sustaining treatment is a matter of the words used rather than a matter of ethics. In regard to PEG placement and feedings, it is important for patients and families to realize beforehand that the feeding tube may be ethically withdrawn in the future. These and other ethical issues should be discussed with a doctor during the informed consent session.
Patients and families need to remember that there are alternatives to PEGs. Patients can receive long-term feedings via nasogastric tubes; some can be hand-fed. The most important issue doctors must address before obtaining informed consent for PEGs is their proven medical benefit. There are certain situations in which there is no proof of a medical benefit for PEG placement. This should be openly discussed.
Controversy — the Use of PEGs in Elderly Demented Patient
As the United States population ages, the incidence of dementia rises. Currently, about 4 million Americans suffer from Alzheimer's disease and other forms of dementia. In the later stages of dementia, patients commonly experience difficulty eating or simply lose interest in eating. Often the result is the placing of a feeding tube.
However, the lack of evidence demonstrating any real benefit for elderly demented patients receiving PEG feedings has led some authorities to question the use of PEGs for elderly dementia sufferers. They argue that if there is no clinical benefit to be achieved from PEG feedings, then patients should not be subjected to a surgical procedure. They also urge physicians and families to realize that a progressive loss of interest in eating can be a natural part of dementia.The most frequently given medical reasons for tube feeding demented patients include lowering their risk of pneumonia, relieving hunger and thirst, healing or preventing pressure ulcers and prolonging life. However, a recent study found no evidence that the use of PEGs accomplishes any of this.
The most frequently given medical reasons for tube feeding demented patients include lowering their risk of pneumonia, relieving hunger and thirst, healing or preventing pressure ulcers and prolonging life. However, a recent study found no evidence that the use of PEGs accomplishes any of this. On the contrary, the authors found that hand-fed patients did better medically than those given PEGs. As for death rates, a nursing home study of demented patients with eating disorders showed no difference in survival between patients receiving tube feedings versus hand-feedings.
Because demented patients cannot communicate reliably, it may be difficult to determine whether they feel intense hunger or thirst. However, the evidence we do have suggests that whatever hunger and thirst they do feel can be easily satisfied with ice chips or sips of water. Given the lack of substantiated clinical benefit from PEGs for the elderly with dementia, one authority concluded that "facilitation of hospital discharge into a less expensive home care or step-down facility is the most likely goal to be realized after PEG placement."
Studies of PEGs and the elderly with dementia have also made another unwelcome discovery: the 30-day post-PEG mortality rate can be as high as 25-30%.
Based on the current state of our medical knowledge there is considerable doubt about the benefits of PEG feedings for these patients. There is also a clear need for guidelines to help doctors select which patients will benefit most from PEGs. Based on this medical uncertainty, it may well be legally, ethically and medically justifiable to withhold tube feedings from severely demented elderly patients. This is especially true in cases where nasogastric feedings or hand-feedings are acceptable alternatives.
Conclusion
The decision of whether or not to consent to a PEG procedure is difficult, but it does not have to be impossible. Careful forethought and an understanding of the complexities can enable doctors, patients and families to make clinically and morally sound decisions. Key questions need to be asked, including: Is there a good medical justification for a PEG? What are the risks? What is the patient's prognosis? Would nasogastric tubes or hand-feedings be more effective or humane?
Especially in the case of elderly demented patients, the benefits of tube feedings have been called into question. Conservative treatment with hand-feeding should be strongly considered.
To the maximum extent possible, the patient's own values and wishes need to be determined. If the patient is incompetent, doctors should respect any available advance directives, such as a living will or proxy. Friends and family should understand that it is both legal and ethical to withhold artificial nutrition and hydration in cases where the patient has properly refused them.
Furthermore, families must also realize that once a PEG has been placed, it is both legal and ethical to withdraw the tube, should the patient's suffering become extreme. Ideally, the conditions under which the PEG might be withdrawn in the future should be discussed and agreed upon prior to PEG placement.
The most appropriate setting for making these difficult, often emotionally wrenching decisions is within the doctor-patient relationship, not in courts of law. Doctors should be able to discuss the relevant ethical, moral and medical issues with family and patients openly and plainly. For example, if a family member asks "But without a PEG, won't he just starve to death?" the doctor should be able to explain that the patient is dying from an underlying disease and that if the purpose is to relieve suffering then artificial feedings may be ethically withheld.
While each case may be different, the best decisions about the use of PEGs are based on a combination of medical understanding and respect for human life in general and the values of the person under treatment in particular.
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