April 2010 Issue
PEG Tube Feeding at the End of Life — When It’s Appropriate, When It’s Not
By Liz Friedrich, MPH, RD, CSG, LDN
Today’s Dietitian
Vol. 12 No. 4 P. 42
Suggested CDR Learning Codes: 4190, 5000, 5040, 5100, 5430; Level 2
“To PEG or not to PEG” is a glib way to express a very serious and all-too-common dilemma for medical and nutrition professionals: whether to use extreme measures to prolong a patient’s life when all of the evidence indicates that doing so only prolongs the patient’s suffering and delays the inevitable at great financial and emotional cost to all concerned. Whether to place a percutaneous endoscopic gastrostomy (PEG) tube may be the hardest decision a dietitian will face, and there are no hard-and-fast rules to guide that decision. This article will address these issues.
Every case is unique and many are “gray area” cases, such as Mary’s: Mary is a 48-year-old woman with end-stage multiple sclerosis whose physical decline keeps her bedridden. Although her body is incapacitated, she is alert and oriented and responds appropriately to questions. Mary is on a puréed diet because of swallowing problems, is eating and drinking very little, and often refuses her medications. She has clearly verbalized to several staff members that she does not want tube feeding to prolong her life and has told her family and friends that she is ready to die. However, Mary’s daughter, who is her legal guardian, says that she will consider a feeding tube to “save” her mother’s life. The facility staff respects Mary’s right to refuse tube feeding but is receiving pressure from Mary’s daughter to place a PEG.
Legal concerns aside, Mary’s case illustrates the difficult and heart-wrenching choices those with terminally ill or elder loved ones face. To help patients and/or their surrogates make the best end-of-life decisions, medical professionals must find a balance between their patients’ personal opinions and religious beliefs and evidence-based guidelines for managing end-of-life care. Fortunately, there is a growing body of literature available on the risks and benefits of using artificial nutrition and hydration (ANH) and indications (or lack thereof) for using tube feeding to maintain or prolong a life. Dietitians can rely on this body of evidence to assist patients and their surrogates and to educate other health professionals.
Health professionals have used tube feeding for decades to provide nutrition and hydration to individuals who cannot or will not eat or drink enough to maintain their nutrition and/or hydration status. Tubes have been used for a variety of reasons, including poor intake, swallowing impairment, and esophageal stricture or tumors. In the early years of ANH, caretakers fed patients via a nasogastric (NG) tube that was inserted through the nose, down the esophagus, and into the stomach. In 1980, the PEG tube was introduced. Placing a PEG tube requires minor surgery, creating a hole through the abdominal wall and into the stomach where a tube is placed for the delivery of liquid feeding and fluids. Although NG tubes are still used, particularly for short-term feeding, use of PEG tubes is now far more common.
Associated Risks
Patients and families rarely recognize the risks associated with tube feeding. Because insertion of a PEG tube is a surgical procedure, it should ideally be performed only if its benefits clearly outweigh its risks.1 In addition to potential problems associated with the surgery itself, daily life with a PEG tube can involve significant complications, including infection around the tube site; tube malfunctions (resulting in a blocked or leaking tube); intolerance of feeding, causing nausea, vomiting, or diarrhea; use of restraints if a confused patient tries to pull the tube; and fluid overload and electrolyte imbalance.
Although PEG tubes are often placed because of swallowing problems, patients receiving enteral feeding are at high risk for developing aspiration pneumonia2, a common cause of death after tube placement.1 When a patient’s renal function declines in the last days of life, ANH can cause choking due to increased oral and pulmonary secretions, dyspnea due to pulmonary edema, and abdominal discomfort due to ascites.3 These side effects of PEG placement can ultimately affect a patient’s nutritional status and overall health and in some cases contribute to his or her death.
Indications for Placement
Although patients often think of tube feeding as a way to get adequate food, PEG tube placement for delivery of ANH is considered a medical intervention. Tube feeding has more in common with other surgical and medical procedures than with hand feeding.3 Using a PEG tube has been described as a form of life support that does not cure but maintains body functions until the body has recovered from a reversible illness or death occurs.4
ANH can be successfully used when a return to a normal quality of life is expected.4 PEG placement is therefore beneficial in many situations. A patient who has had surgery, trauma, a stroke, or burns but is expected to recover will benefit from ANH. Those with permanent swallowing problems or damage to the esophagus, stomach, or intestines can receive long-term feeding indefinitely via the stomach or intestines. ANH can prolong the lives of patients with short-bowel syndrome and may improve the survival of patients in the acute phase of head or stroke injury and among patients receiving short-term critical care.3
On the other hand, all medical professionals know that tube feeding is not indicated in every situation. Fortunately, several practice guidelines for PEG placement have been published to help practitioners determine when PEG tubes are beneficial. The most evidence-based and clinically useful guideline recommends the consideration of PEG placement in four conditions:
• head and neck cancer;
• acute stroke with dysphagia;
• neuromuscular dystrophy syndromes; and
• gastric decompression.1
A Difficult Decision in Terminal Illness Cases
Deciding whether to initiate ANH is a complex decision when a patient is terminally ill. Tube feeding can maintain life but cannot restore consciousness, prevent imminent death5, or increase a patient’s comfort.3 Tube feeding will not usually replace weight that a patient has lost or change the hypermetabolic state that often exists at the end of life.6 Provision of ANH does not result in improvement in nutritional status or body mass index for most terminally ill patients and can result in medical complications and/or decreased quality of life.6 In one study, even prolonged tube feeding with adequate formula failed to improve nutritional parameters in nursing home patients who were chronically ill.1 However, tube feeding may prolong life in patients with terminal illness such as cancer, end-stage chronic obstructive pulmonary disease, renal and liver disease, and end-stage congestive heart failure. For some patients, prolonging life is a justification for tube feeding, even if their quality of life is decreased.
Loss of appetite and decreased intake is part of the dying process and usually occurs long before a person reaches the last few hours of life. Attempting to reverse this normal process with a medical intervention may not be in every patient’s best interests. As medical providers contemplate whether to tube feed a patient, they must consider that patient’s overall approach to medical care and life-sustaining procedures. Does the patient want life at all costs or does he or she prefer a more palliative approach to end-of-life care? Are there treatments other than ANH that will improve the patient’s condition? How important is quality of life to a patient and will PEG placement decrease the patient’s quality of life in the time that he or she has remaining?
Dementia, including Alzheimer’s disease and other forms of dementia, is a terminal illness similar to incurable cancer.7 However, providers and their surrogates don’t always view dementia in these terms, complicating tube-feeding decisions for these patients. As with other terminal illnesses, the progression of dementia results in poor food and fluid intake, and the use of ANH in patients with dementia is common in long-term care facilities. According to one survey, in 1999, 34% of residents with severe cognitive impairment in U.S. nursing homes had PEG tubes.1 However, numerous studies have found no evidence that enteral tube feeding provides any benefit to patients with dementia in terms of survival time, mortality risk, quality of life, nutritional parameters, physical function, and improvement in or reduced incidence of pressure ulcers.3,5,8,9
Terminal anorexia and cachexia usually accompany dementia and appear to be due largely to inflammatory cytokines unimproved by nutrition. It is now generally accepted that the preferred treatment for patients with advanced dementia is hand feeding, which provides socialization and oral satisfaction, rather than tube feeding. However, many families of patients with dementia request tube feeding even when advised otherwise. Perhaps the fear or guilt involved in letting a loved one die of starvation or dehydration influences their decision.
The Physiology of Death and Dying
The end-of-life process includes numerous transitions: emotional, spiritual, and physical. Researchers have closely studied the physical process of dying as it relates to withholding nutrition and hydration. Studies indicate that physiological adaptation to starvation prevents discomfort in the absence of food.5 Patients who are dying who stop eating experience hunger only initially, if at all. When food and fluid intake is poor, dehydration usually occurs before starvation. Dehydration eventually results in hemoconcentration and hyperosmolality with subsequent azotemia, hypernatremia, and hypercalcemia.5 These metabolic changes are said to produce a sedative effect on the brain just before death. Withholding or minimizing hydration can also have the desirable effects of reducing oral and bronchial secretions, need to urinate, and cough from pulmonary congestion.5 There also may be fewer requests for pain medication.10
Based on the available evidence, withholding ANH is not painful or uncomfortable. In fact, dehydration may actually increase comfort and minimize pain during the dying process. Confusion, delirium, and diminished alertness often associated with the active dying process may occur during any progressive illness and not just because food and fluid are not provided.3 Dehydrated patients may experience dry mouth, which can be managed using proper mouth care, ice chips, and moistened swabs. If pleasure feeding is desired, texture modifications, thickened liquids, and specialized feeding techniques can help reduce the risk of aspiration.
Helping a Patient Choose
Each patient who is faced with the decision to place a feeding tube is unique. Patients make a decision to initiate tube feeding using their knowledge, attitudes, and beliefs for guidance. Unfortunately, many patients, especially dementia patients, are unable to state their needs and rely on a surrogate (usually a family member or legal appointee) to make the decision for them. Surrogates may be completely unaware of their loved ones’ feelings about life-sustaining procedures even if they hold the patient’s healthcare power of attorney or serve as the patient’s responsible party. Legal documents such as advance directives or living wills that outline a patient’s wishes can provide guidance to both surrogates and healthcare professionals. In the absence of advance directives, providers and patients or surrogates must be able to communicate openly about the risks and benefits of PEG tube placement.
When considering whether tube feeding is appropriate for a patient, providers should consider what can be accomplished by tube feeding and whether that goal is reasonable given the patient’s prognosis. Patients with terminal illness cannot expect to change their prognosis and may be unable to prolong life or improve quality of life with the use of ANH. It is ethical to forgo tube feeding when all concerned parties understand what can and cannot be achieved with tube feeding.5 However, surrogates may worry that they will be wracked with guilt if they make a decision to let their loved one “starve to death.” Medical professionals can play a supportive role by outlining tube feeding’s benefits and risks. Discussions about possible PEG insertion should include information on the effect of withholding food and fluid on a patient’s comfort during the dying process. If medical professionals can assure patients and surrogates that withholding food and fluids does not cause a painful death, it may make the decision easier.
Referral to hospice care may be appropriate if a patient decides not to place a PEG tube. To be accepted to hospice, a patient must have fewer than six months to live. Hospice will accept patients with PEG tubes but rarely places a PEG tube after hospice care is initiated. Physicians can provide palliative care at any time during a patient’s illness to relieve symptoms such as pain, shortness of breath, loss of appetite, and constipation. Palliative care is often used in conjunction with treatments, including tube feeding, to offer patients the best quality of life possible during their illness. If a patient opts for no aggressive treatment, “comfort care” is often initiated. This is usually ordered in the last days or weeks of life when the patient or surrogate wants no heroic measures such as hospitalizations or medications other than pain relief.
Withholding vs. Removing a PEG Tube
Perhaps even more difficult and emotionally wracking than placing a PEG tube is the decision to initiate tube feeding and then stop it if the patient’s condition does not improve. Stopping tube feeding is considered ethically and legally indistinguishable from never starting it.1 However, families may be reluctant to withdraw feeding, believing it to be morally obligatory and considering the withdrawal of nutrition and hydration intentional killing.5 From a practical standpoint, if tube feeding is considered a medical intervention, then withdrawing it is no different from choosing not to proceed with chemotherapy or dialysis. However, withdrawing “food” can carry an emotional burden that is difficult to overcome. According to one study, artificial nutrition is typically the last life-sustaining measure withdrawn1, most likely due to the emotional issues that come with withdrawing food. If a tube is placed temporarily, the patient and/or surrogate should be fully aware that they may need to make a future decision about whether to remove it.
Guidance for Healthcare Professionals
Despite the evidence outlining indications for the use of tube feedings, some healthcare providers believe that giving tube feedings or IV therapy is a level of basic humane care.4 Many providers believe they must always offer nutrition as an option, just as they must offer pain management and basic personal care.3 However, medical providers should set aside their personal and/or religious beliefs, listen to their patients and their surrogates, and rely on professional guidance regarding inserting PEG tubes and the ethics of withholding or withdrawing them.
Several organizations have developed position statements on ANH, including the American Society for Parenteral and Enteral Nutrition (ASPEN), the American Medical Association, the American Dietetic Association, and the American Academy of Hospice and Palliative Medicine. These statements can help medical professionals best guide their patients. The Web sites for these statements are provided in the sidebar.
While the statements vary, they provide essentially the same message, emphasizing the importance of advance directives and living wills and institutional policies regarding the withdrawal or withholding of ANH. They also agree that respecting patients’ dignity and rights, including their right to choose, is a high priority. According to ASPEN, nutrition support therapy should be “…modified or discontinued when there are disproportionate burdens or when a benefit can no longer be demonstrated.”11 This statement gives providers a starting point for determining whether a patient is a candidate for tube feeding. However, regardless of what providers recommend, they must uphold the patient’s wishes. If they disagree with that decision, they should transfer the patient to another provider who will comply.5
Implications for Practitioners
All patients should be encouraged to have advance directives or living wills that clearly spell out their plans for treatment in the event of trauma or terminal illness. These documents should be revisited periodically and particularly when a patient’s food intake declines for an extended period of time. Unfortunately, many advance directives are not specific enough to include ANH, so healthcare facilities should have additional documentation in place that specifically indicates whether aggressive treatments such as tube feeding, IVs, and hospitalizations are desired. The sample document provided can help facilities obtain more detailed information on which type of life-sustaining procedures are desired.
Dietitians don’t always play an active role in obtaining advance directives regarding tube feeding. In some facilities, one staff member is designated to handle these sensitive conversations to ensure that a patient or surrogate isn’t approached repeatedly. In other environments, all staff, including dietitians, are encouraged to talk openly with families and patients about tube feeding. Dietitians should respect the protocols that are in place in each healthcare facility and be as active a participant in the decision-making process as possible. As part of the medical team, dietitians can provide staff education on the risks and benefits of tube feeding through formal training and informal conversations with other medical staff. Discussions with patients and/or surrogates regarding tube feeding should be thoroughly documented in the medical record so they are available for all members of the patient’s medical team.
Like all professionals, dietitians should separate their personal beliefs from what is in their patients’ best interest. Above all, dietitians should remember to respect a patient’s choice “to PEG or not to PEG,” even if they disagree with the patient’s choice.
Mary’s Outcome
Returning to the case with which we started, the facility physician told Mary’s daughter that it was against his professional ethics to place a tube in an alert, oriented patient who had specifically declined tube feeding. The physician offered to transfer Mary to another physician for placement of the feeding tube if the daughter believed it was in her mother’s best interest. Ultimately, Mary’s daughter decided that she should respect Mary’s rights and elected to hand feed her mother rather than have a PEG tube placed.
Mary’s case illustrates two vital concepts: practitioner confidence and patient clarity. Mary’s advance directive was not equivocal but it relied on practitioners accurately judging the state of her health and quality of life. In determining this, dietitians perform a largely advisory role; the physician makes the medical judgment. But dietitians can and must be prepared to communicate the risks and benefits of tube feeding and have confidence in their knowledge that withdrawing or denying nutrition support alleviates, rather than causes, suffering.
— Liz Friedrich, MPH, RD, CSG, LDN, is owner of Friedrich Nutrition Consulting, a company that specializes in nutrition care for older adults. She is a board-certified specialist in gerontological nutrition and an evidence analyst for the American Dietetic Association’s Evidence Analysis Library.
Position Statements on Artificial Nutrition and Hydration
• American Academy of Hospice and Palliative Medicine Statement on Artificial Nutrition and Hydration Near the End of Life: www.aahpm.org/positions/nutrition.html
• American Dietetic Association: Ethical and Legal Issues in Nutrition, Hydration, and Feeding: www.eatright.org/About/Content.aspx?id=8408
• American Medical Association Statement on End-of-Life Care: www.ama-assn.org/ama/pub/physician-resources/medical-ethics/about-ethics-group/ethics-resource-center/end-of-life-care/ama-statement-end-of-life-care.shtml
• American Society for Parenteral and Enteral Nutrition Statement on Ethics of Witholding and/or Withdrawing Nutrition Support Therapy: http://ncp.sagepub.com/cgi/content/full/23/6/579 - top
Learning Objectives
After completing this continuing education exercise, the student should be able to:
1. List medical conditions where tube feeding can benefit adults.
2. State the risks associated with tube feeding.
3. Understand the factors that go into a decision to place a feeding tube.
4. Discuss metabolic changes that occur during the process of death by dehydration.
Examination
1. Which of the following is not a potential complication of percutaneous endoscopic gastrostomy (PEG) tube feeding?
a. Aspiration pneumonia
b. Decreased ability to swallow
c. Infection around the tube site
d. Nausea, vomiting, or diarrhea
2. PEG tube placement has been found to have which of the following benefits in patients with dementia?
a. Increased life span
b. Improved quality of life
c. Improved wound healing
d. None of the above
3. In ideal circumstances, who should make the decision to place a PEG tube?
a. The patient
b. The patient’s family
c. The patient’s doctor
d. The care plan team
4. Studies show that death by dehydration is painful.
a. True
b. False
5. In the last months of life, physiological changes occur that include:
a. weight loss.
b. decreased intake of food and fluid.
c. None of the above
d. a and b
6. Tube feeding will probably have the most benefits for:
a. a stroke victim who has a good prognosis for recovery.
b. an elder patient with stage IV metastatic cancer.
c. a patient newly admitted to hospice.
d. a 68-year-old with end-stage dementia.
7. Healthcare providers can help patients and surrogates make decisions about tube feeding by:
a. discussing the risks and benefits of tube feeding.
b. discussing the patient’s chances for rehabilitation.
c. discussing the patient’s wishes.
d. All of the above
8. Which of the following statements about tube feeding is false?
a. Studies show that tube feeding extends life for dementia patients.
b. Placing a PEG tube is a surgical procedure that carries risk.
c. Tube feeding is considered a medical intervention.
d. Tube feeding increases the chances that patients will maintain their weight.
9. Conversations between patients and medical professionals about advance directives should include:
a. a patient’s desire for CPR.
b. a patient’s desire for artificial nutrition and hydration (ANH).
c. a patient’s desire for hospitalization in the event of an emergency.
d. All of the above
10. RDs working with end-of-life patients in home health, hospice, and healthcare communities should:
a. document conversations about advance directives regarding tube feeding in the medical record.
b. encourage medical staff to obtain and document advance directives regarding artificial nutrition and hydration.
c. provide education to medical staff about tube feeding.
d. All of the above
References
1. Plonk WM. To PEG or not to PEG: Nutrition issues in gastroenterology. Practical Gastroenterology. July 2005. Available at: http://hsc.virginia.edu/internet/digestive-health/nutritionarticles/plonkarticlejuly2005.pdf. Accessed January 25, 2010.
2. Mizock BA. Risk of aspiration in patients on enteral nutrition: Frequency, relevance, relation to pneumonia, risk factors, and strategies for risk reduction. Curr Gastroenterol Rep. 2007;9(4):338-344.
3. Casarett D, Kapo J, Caplan A. Appropriate use of artificial nutrition and hydration—fundamental principles and recommendations. N Eng J Med. 2005;353(24):2607-2612.
4. Schultz MAF. Helping patients and families make choices about nutrition and hydration at the end-of-life. Topics in Advanced Practice Nursing eJournal. June 4, 2009. Available at: http://www.medscape.com/viewarticle/703907. Accessed February 5, 2010.
5. Position of the American Dietetic Association: Ethical and legal issues in nutrition, hydration, and feeding. J Am Diet Assoc. 2008;108(5):873-882.
6. Gramich L. Ethical considerations in enteral nutrition: To PEG or not to PEG. Presentation at: American Society of Parenteral and Enteral Nutrition Clinical Nutrition Week; February 10, 2010; Las Vegas, Nev.
7. Volicer L. Goals of care in advanced dementia: Quality of life, dignity and comfort. J Nutr Health Aging. 2007;11(6):481.
8. Sampson EL, Candy B, Jones L. Enteral tube feeding for older people with advanced dementia. Cochrane Database Syst Rev. 2009;(2):CD007209.
9. Chernoff R. Tube feeding patients with dementia. Nutr Clin Pract. 2006;21(2):142-146.
10. Collins N, Spaulding-Albright N. To feed or not to feed: Nutrition considerations at the end of life. OWM. 2009;55(9),12-16.
11. American Society for Parenteral and Enteral Nutrition Statement on Ethics of Withholding and/or Withdrawing Nutrition Support Therapy. September 2008. Available at: http://www.nutritioncare.org. Accessed January 25, 2010.
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