A blunt description of stomach tube surgery might go something like this:
A doctor is going to poke a hole in your elderly aunt’s stomach and stick a feeding tube in it, and liquid formula will be pumped through the tube for her breakfast, lunch and dinner.
For physicians, this is routine and uncomplicated surgery. For the families of ailing seniors, it is yet another medical procedure fraught with uncertainty that arouses disturbing questions and fears about life and death, often accompanied by feelings of guilt and family turmoil.
Interviews with members of two Iowa families, who requested anonymity to protect their sick relatives’ privacy, reveal the anguish people face when asked to sign off on the recommendation to feed an ill parent or other relation by stomach tube.
Unlike many cases, both families became thoroughly informed about the procedure and rejected the recommendation; in both cases, their elderly parents got better.
“I don’t think anybody felt 100 percent certain about anything, that we were making the right decision,” said an Iowa City man whose mother had a massive stroke in the summer of 2010.
He ultimately declined a feeding tube on her behalf, but not without painful arguments with siblings. Representing his mother’s interests was all the harder, the son said, because she did not have a complete living will – a document prepared ahead, outlining her wishes for future care should she become incapacitated and unable to express her preferences.
Adult siblings in another family, from Cedar Rapids, also decided against placing a feeding tube in their father after determining that he would not want this done to him. All the children were united in this decision, according to a son.
Both these families took the time to consider pros and cons and evidently had the fortitude to defy a common medical recommendation.
Read more on the PEG Procedure here.
REJECTING DOCTORS’ ADVICE A RARITY
But experts say this pattern is not the norm.
Choosing stomach tube surgery for a patient who cannot or will not eat normally, as with other medical decisions, is premised on “informed consent.” This means the patient or someone representing the patient’s best interests has been fully informed about risks and benefits as well as alternatives, has opportunity for discussion, and has accepted the procedure.
Read more on when to use a PEG here.
The American Medical Association says informed consent “is more than simply getting a patient to sign a written consent form.” Doctors should discuss the nature, purpose, risks and benefits of the proposed treatment, as well as problems that may arise if the treatment is declined.
The process of obtaining informed consent for PEG tubes is complicated by the fact that patients often are in critical condition and unable to participate. And elderly people with degenerative neurological diseases such as Alzheimer’s may not be considered legally competent to assess the recommendation, which often comes before they are transferred from hospital to nursing home.
“My patients cognitively or neurologically often cannot participate in their discharge plan,” said Angela Carey, a social worker for neurosurgery patients at the University of Iowa Hospital.
So consent for placing a feeding tube often falls to family members. And what seems relatively minor in the medical world may be one of the most challenging decisions the family will face.
A study published in the Archives of Internal Medicine in 2001 found that among 154 cases of PEG tube placement, just one had documented discussion about the benefits, risks, and alternatives.
At the University of Iowa, Karen Bryant, a speech pathologist and swallowing expert who has worked in the field for two decades, said she has seen marked increase in the level of family consultation in the past few years.
Speech therapists get requests to assess swallowing problems for patients throughout the hospital with conditions associated with all types of disease processes, ranging from traumatic brain injury, surgical fusions and strokes to Alzheimer’s, Parkinson’s, dementia, “and older people who are just debilitated—the list goes on,” Bryant said. And doctors often ask her to speak with patients and family members about tube feeding options, she said.
PEG DECISION ‘NOT BLACK AND WHITE’
Bryant emphasized that feeding tube decisions for elderly people ultimately hinge on a myriad of considerations, including patient and family preferences, relatives’ availability to help patients relocated to nursing homes, and nursing home policy. “It’s not black and white,” she said. “It depends on where you are in the world.”
“Our ultimate goal always is that they can eat by mouth; but they also have to be safe, and they have to have nutrition,” Bryant said. “I always stress, especially in the elderly, that it is a quality-of-life issue, to be made with the family and the doctor.”
If the patient has little chance of recovery, the discomfort and possible complications of a feeding tube may make the last period of life worse; but Bryant says that even when her personal belief is “let this person go,” family members may think otherwise.
One drawback of tube feeding is that “if swallowing is not used, it gets worse over time,” Bryant said. If a patient could regain the capacity to eat normally fairly soon, a feeding tube may be unnecessary and could even hinder improvement, and informed consent is premised on full knowledge of these possibilities.
HE ‘EATS LIKE A HORSE’
In the Cedar Rapids family that declined stomach tube placement, the father started eating regularly within a few days. “He’s doing reasonably well under the circumstances,” the son said a year after the stroke. “He has a wonderful appetite. He eats like a horse.”
In the case of the Iowa City family, the mother’s condition greatly improved, which her son attributed in part to the decision to avoid a stomach tube. “The psychological impact of [the tube] certainly would have been negative,” he said.
In this family, the siblings had briefly split into opposing camps over their mother’s treatment, with one daughter particularly adamant about placing the feeding tube because she believed that to do otherwise would be to starve their mother to death.
Bryant, the speech pathologist, said family members often think not inserting a feeding tube is tantamount to starving their loved one, and said situations when siblings are “all on board but one” are not unusual.
Relatives’ fears about starvation and abandonment may be misplaced but are understandable, said Dr. Paul Mulhausen, a geriatrician at the University of Iowa Hospitals and Clinics. “The basic humanitarian act is to offer someone food and water,” he said.
‘MOM’S CHICKEN SOUP’
“As a society, one of the ways we nurture ourselves and others is by feeding. If you have a cold, it’s the proverbial Mom’s chicken soup,” said Dr. Timothy Ihrig, a Des Moines physician specializing in palliative care.
Some families thus take great comfort in a stomach tube placement even if it won’t improve the outcome, and Mulhausen informs them of the procedure even if he wouldn’t choose it himself. “I do feel obliged to present [the PEG tube] as an option,” he said.
Dr. John Rachow, another University of Iowa geriatrician and strong critic of placing feeding tubes in patients with advanced neurological illness, likewise considers families’ desire for consolation. “If it’s an informed decision based on the pros and cons, I always respect that,” he said.
What he objects to is a doctor telling a family that the patient “needs” a feeding tube and the family going along without having the time to ask questions or think about all of the consequences.
Rachow believes families rarely comprehend what is going on in these situations. “Before the shock wears off, they’ve got the feeding tube,” he said.
Not surprisingly, family members are likely to defer to a physician’s expertise when a feeding tube is recommended. So are patients themselves, even those competent to determine otherwise.
And the hospital setting accentuates this tendency. “There is a belief you are consenting to be treated just by being hospitalized,” said Ihrig, the Des Moines physician.
Mulhausen sees PEG tubes as an example of a medical technology that has advanced faster than cultural understandings of the device. “We have the capacity to do it before we understand what we want to do with it,” he said.
TUBE DEBATE LIKE CULTURAL BATTLE
The medical literature on feeding tubes is not definitive, so physicians often interpret the literature based upon ideology, according to Mulhausen. “This is a cultural battle,” he said. “What does it mean to have a way to feed somebody?”
Dr. Janeta Tansey, an Iowa City psychiatrist and specialist in bio-ethics, agrees that cultural functions can be more important than the medical science behind a procedure.
Some grieving families might look to a feeding tube as a kind of ritual practice of putting food in their loved one’s belly, said Tansey, who has worked at the University of Iowa Hospital, Mercy, Iowa City and Eastwinds Healing Center. While our society has many ways to celebrate humanity and community surrounding birth, we lack such rituals for the dying, she said.
Dr. David Weissman, a palliative care physician and professor emeritus at the Medical College of Wisconsin, agrees that feeding tubes get used largely for social and cultural reasons.
“How do we feed somebody who can’t feed themselves adequately?” he asked. “We don’t know how to deal with this issue short of putting in a mechanical device.”
DOCTOR, PATIENTS NOT TALKING
In such stressful situations, Weissman said, physicians should talk with family members to get everyone’s concerns out in the open and figure out the best course of action. Unfortunately, he said, most doctors are unprepared for the conversations that are necessary for families to make sound, informed decisions.
See Benefits and Burdens of using a feeding tube.
Read the choices worksheet here.
Next of kin need to know, for instance, about alternatives to the PEG, including hand feeding by family members and trained caregivers, or other types of feeding tubes that are more temporary and go through the nose. Nose tubes are much easier for distraught patients to tug out, but unlike a PEG, which goes through a surgical hole in the belly, extraction of a nose tube does not leave a wound or scar.
Hand feeding demands more time and attention than tube feeding. Nursing home residents are often finicky about food and require highly individualized care. Eating can be a particular struggle for elderly people suffering from severe memory loss, according to John Rachow, the UI geriatrician.
But for the chronically ill, hand feeding can preserve the pleasures of eating and maintain a person’s quality of life, as opposed to trying to cure the actual disease process. “There’s probably more dignity and humanity in taking food orally then having a bag hooked up and dumped in the stomach three times a day,” Rachow said.
Lavon Yeggy, a nurse and memory loss specialist at Legacy Gardens, an assisted living facility in Iowa City, is all in favor of helping residents eat as they wish.
“If a person wants to eat ice cream three times a day, and they have end-stage Alzheimer’s disease, then why not let them eat ice cream?” she asked. “If the person is hungry, then it’s up to us as caregivers to figure out a way to help them eat, and to provide them with the food that they desire. A feeding tube is not the answer.”
Karen Bryant, the UI speech pathologist, pointed out that regimens can combine tube feeding with taking food and drink orally, and gave the example of an elderly man with a stomach tube who “every day at 3 p.m. had to have his small glass of beer.”
Yet physicians generally do a poor job of informing family members about hand feeding and other options for their loved ones, according to David Weissman, the Wisconsin palliative care physician. “The primary cause lies at the feet of clinicians, mainly doctors, who don’t have the knowledge about feeding tubes and their benefits and risks,” he said.
Doctors too frequently take “the path of least resistance” rather than devoting time to meaningful consultation with the family, Weissman said. “It’s a lot easier than scheduling time for a family meeting, having a discussion, going through all the emotions. That’s a big deal.”
But only these “big picture” conversations can give families an accurate understanding and enable them to make good decisions, he said. Such meetings also can prevent unnecessary and potentially harmful interventions for patients who are dying.
Des Moines doctor Timothy Ihrig agrees. “We want to be able to do something,” he said. “And to feel as though we have no control is very, very hard, not just as physicians but as human beings.”
He added: “But just because we can doesn’t necessarily mean that we should.”
(Gabe Gao is a December 2011 graduate of the University of Iowa’s Master of Arts in journalism program and is now a medical student at Northwestern University)