Nourishment or punishment: When should tube feeding stop?
Withdrawal of artificial nutrition and hydration major crisis for families
Who can imagine deciding to let a loved one starve to death? The decision to withdraw a feeding tube unfathomable to families yet possible in the eyes of the law is an ethical issue nearly impossible for physicians to resolve.
But ethics experts say it is incumbent upon members of ethics committees in all health care settings to challenge the notions that artificial feeding is always beneficial to the patient and that withdrawing feeding tubes is the same as letting a loved one starve to death.
In fact, tube feeding can cause harm. "It is not innocuous to tube feed a patient when their edema gets worse, when they have increased urinary output [that causes bed sores], when you have to do invasive surgery to place a nasogastric tube, when you have to apply physical or chemical restraints," says Joan Harrold, MD, an associate professor of medicine at George Washington University in Washington, DC, and a faculty member of the school’s Center to Improve Care of the Dying.
The central concerns regarding all medical treatment options are whether treatment fits the individual patient’s goals of care and whether it causes more harm than benefit, say Harrold and others. Artificial feeding is often an appropriate course of treatment, but it can cause a loss of well-being, discomfort, and even pain. In particular, the harm caused by artificial nutrition may be quite visible outwardly but may be overlooked by family and caregivers because of the overwhelming symbolic meaning of food and water.
"If the caregiver and the family can get over the philosophical concerns, they can almost always look at the patient objectively and see when they are causing harm," says Marcia Levetown, MD, pediatric hospice director at the Hospice of Galveston County in Texas City, TX.
As for dehydration and its effects, "The physiology of death is not always what we would predict," explains Joyce V. Zerwekh, RN, CS, EdD, a Seattle-based public health nursing consultant and nurse educator with a background in hospice nursing. There is no demonstrated proof that giving fluids to a dying patient enhances comfort, she contends. Generally, dying patients who have less fluid intake do not have electrolyte changes and actually experience a sedating effect. "The body doesn’t need fluids to die," Zerwekh says.
"If dehydration is indeed a natural analgesic, then allowing it to occur at the very end of life, far from being cruel, can be considered to be palliative and compassionate," she argues.
Your ethics committee would be wise to establish some general guidelines for treating patients who have difficulty chewing, swallowing, or digesting food and fluid, say experts interviewed by Medical Ethics Advisor.
The dietary needs of the dying patient are best met when caregivers answer the questions, "What is the goal of artificial nutrition and hydra-
tion? What are the benefits and burdens for this particular patient?" A decision to start or stop artificial nutrition should be based on answers to these questions and on the patient’s stated wishes in an advance directive, experts say.
If the goal is for the patient to die in comfort, hydration and surgical implantation of feeding tubes may be deemed inappropriate, and other options for comfort care should be explored.
"It is difficult for most physicians to tell a family that their loved one is dying, but a doctor must be honest and tell the family when giving fluids will not work," Zerwekh says.
Many people hold the mistaken notion that tube feeding and hydration is the "last thing" that can be done for the patient, says Cheryl Moxley, RD, LD, clinical nutrition specialist at the Washington (DC) Hospital Center. Never allow medical technology to become a substitute for comfort care, Zerwekh says. "This is not the time for the dietitian to sign off the case," Moxley adds.
Rather, when a decision about withholding or withdrawing this life-sustaining treatment is being considered, the care team, including the physician, nurse, and dietitian, should ask these four questions about the patient’s situation:
1. What are the barriers to eating and drinking by mouth? Many aspects of the disease process can affect the ability to eat or drink, Moxley says. Patients, especially elderly dementia patients, may suffer from loss of function. They may not recognize food for what it is or know what to do with it. They may lose the ability to chew or swallow. They may be too weak to feed themselves. Other possible barriers include dentures that no longer fit and medication side effects that cause a sore mouth, constipation, and/or diarrhea.
In pediatric care, the patient may not have the physical capacity to tolerate food, Levetown says. (See stories on pediatric and geriatric issues surrounding the withdrawal of artificial nutrition and hydration, p. 63.)
Moxley and Levetown recommend flexibility in these cases. "You have to adapt to the patient’s changing needs," Levetown says. Moxley does this in several ways: by substituting liquid or soft food like pudding and jello for solids, providing smaller and more frequent meals throughout the day, teaching the patient to position the chin to permit easier swallowing, and asking family members to help feed patients.
Don’t count calories or worry about strict diet regimens such as low-salt and low-fat, Moxley says. Labs and calorie counts also are unnecessary, since they will not change the comfort care goals, she says. If the patient is unable to take fluids, give ice chips or help the patient suck on a wet washcloth periodically.
2. Are there signs of fluid overload? Our experts list these signs of fluid overload: vomiting, peripheral edema, stomach distention, pulmonary edema, urinary incontinence, constipation, increased secretions in urinary output, and increased bed sores.
3. What are the actual benefits of the treatment? Benefits include enhanced patient awareness and alertness, signs of symptom relief, or reversal of dehydration caused by diarrhea or other diuretic therapy.
4. Are there psychosocial burdens caused by the treatment? Does the patient and/or family talk about being "hooked up to machines"? Is the patient agitated? Is the technology interfering with the patient’s ability to interact with loved ones? Does the treatment follow the patient’s wishes? Is it prolonging or improving life?
Communication among all members of the medical team is essential. It allows for continual assessment of the burdens and benefits of care and helps alleviate both family and caregiver distress.
"The reality is that family members and caregivers have to have time and have to be helped to think this option [whether or not to tube feed] through," Zerwekh says. Teach staff to trust their own clinical observations about the patient’s condition and weigh them as benefits or harms. Don’t generalize about right and wrong.
Ethics committees can help further by providing education and resource materials on artificial nutrition and hydration. You may want to look for articles that discuss a patient’s particular disease or a particular health care profession’s viewpoint. (See Resources, above.)
Above all, begin by dispelling the myth that providing patients nutrition through a tube is the same as sustaining them with food, say these experts. "We are not talking about gathering together to break bread," Harrold says. "We have to teach family members and staff that caring and compassion don’t have to be administered through an IV tube," Zerwekh says.
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