Typical hypothetical situation- elderly have advance directive stating does not want tube feed. Has CVA and has not been thriving, intake poor, thickened fluid, pureed diet, lethargic, sleepy but pleasant when awake and can express basic needs. Labwork shows dehydration- IV fluids ordered. MD states "Talk to the family and tell them the resident needs a PEG Tube for food and meds." While I begin to look for her age, I am asking "She is not that old is she?" And as I see her age, he states "She is in her late 70's, you don't even know this patient, do you really call yourself a nurse? Look in the chart in front of you," I ingnore his tirade and state that the reason why I'm bringing up her age is that shouldn't we present other options, like Hospice?" He restates his order- call the family and tell her she needs a G-T. I feel that this is HIS job but I call anyway so that I can present other options to the son, such as following his mother's living will, talking to a parrish counselor, educating himself about G-Tubes in the elderly and state that he doesn't have to make up his mind now, why don't we see if she perks up on the IV fluids first. Now, the social worker didn't want to touch this one.
How do most of you handle a situation like this? Isn't the MD manipulating outcome by stating "She is going to starve to death without a PEG TUBE" ?
I have actually told the family member I will provide him with articles like the following: (I realize the woman is post CVA and not dementia, but she is very frail and sickly besides) Wouldn't an NG tube be more appropriate for short term tube feedings?
For more articles like this, do a search on any engine. What would you do?
Scrutinizing the Ethics of Tube Feeding in Demented Patients
Does the Practice Relieve, or Just Prolong, Suffering?
By Sean Swint
With Reporting by David Holzman
WebMD Medical News
Jan. 20, 2000 (Atlanta) -- One of the most agonizing decisions a person may ever have to face is what to do with a dying loved one. When a person lapses into dementia, for whatever reason, should a feeding tube be used when they can't eat on their own?
The answer, of course, varies with who is asked, and from what perspective the decision is made. A Harvard Medical School professor argues in an editorial in today's issue of The New England Journal of Medicine that most patients with advanced Alzheimer's disease and other forms of dementia should not be offered tube feeding.
"Tube feeding in this population does not seem to prolong life," Muriel R. Gillick, MD, tells WebMD. "As best we can tell, [feeding] tubes are not necessary to prevent suffering, and people who think religious doctrine dictates tube feeding may be misinformed."
Geriatric expert Christine Cassel, MD, applauds Gillick's commentary. "What Dr. Gillick has highlighted so beautifully in this article is that [inability to eat] signals the end stage of the disease, and we ought to be thinking about this as a terminal illness and treating these patients with hospice," she tells WebMD. "The knee-jerk approach, which has been widespread in the U.S., is that if someone stops eating, you should put a tube in and not think of it as part of the course of the advanced disease, particularly with dementia." Cassel, who reviewed the commentary for WebMD, is chairman of the Henry L. Schwartz department of geriatrics at Mount Sinai School of Medicine in New York.
Though tubes placed in the stomach, called gastrostomy tubes, are not used in the majority of people with dementia, Gillick notes that the precise frequency is not really known. Based on 1995 figures, 121,000 elderly patients received gastrostomy tubes, and about 30% of these had dementia.
Irrespective of frequency, few studies have shown any benefit in providing feeding tubes to this population. "t has been remarkably difficult to demonstrate any difference in longevity between [dementia] patients with feeding tubes and those without feeding tubes," Gillick writes. One 1997 study found no difference in survival rates between nursing home patients with advanced dementia who were fed by hand and those who were tube fed; other studies have confirmed this finding. Nevertheless, these studies are observational, and it is possible, she writes, that certain subgroups, such as "persons with vascular dementia who have difficulty swallowing because of a small brain-stem stroke," might benefit from tube feeding.
Annette Vitale-Salajanu has a father with vascular dementia who's in a veterans' home in Grand Rapids, Mich. She and her sister discussed the issue with their mother, who was a nurse, and came to the conclusion not to resuscitate her father, but to use the tube.
Vitale-Salajanu tells WebMD, "Our decision was [made], in part, because we feel there is a difference between our ethical obligation to provide basic human needs, like food and nutrition, and taking extraordinary means, like the use of the resuscitator, which would, in essence, interfere with the dying process."
But what of people with other types of dementia, though -- say, from Alzheimer's? The most plausible explanation for the failure to find a survival advantage with the use of gastrostomy tubes is this, says Gillick: Eating is among the last activities of daily living to become impaired, and so difficulty with eating marks the final stage of the illness. "It's a very complicated neurological process, and they lose the capacity. They don't know what to do with food in the mouth, they don't chew it, push it to the back of the mouth, and swallow it in a coordinated fashion," says Gillick, who is director of the Harvard Geriatric Fellowship Program and director of medical education for the Hebrew Rehabilitation Center for the Aged in Boston.
Frena Gray-Davidson is a self-described Alzheimer's educator who has written two books on the subject, one of them titled The Alzheimer's Sourcebook. She often counsels people grappling with miseducation and tough decisions surrounding the disease.
"Very often what I see in Alzheimer's, what happens to people, is a collection of misunderstandings, and accidents, and a little staff negligence, and a little medical this and that, and it's a whole picture of various things going on," she tells WebMD. "I don't think, on the whole, people should tube feed, but I don't tell families that, I try to lead them through the whole issues looking at the process and acceptance of death and making the decision they're going to have to live with all their lives. My personal bias is for no tube feeding, but up until then, hey, have as good a life as you possibly can with Alzheimer's."
Echoing Cassel, Gray-Davidson speaks about what she calls the body's decision: that by refusing to eat, the body is making an "organic choice" to die and -- as she has seen with some cancer patients -- there's almost a "turn-off point" where the body "fades" into death. " suspect what happens sometimes is we're essentially looking at someone who is ready to die, and the people around them are not ready to let them," she tells WebMD.
Even though it is uncertain whether tube feeding can prolong life, some argue that tube feeding is necessary to prevent suffering from hunger and thirst. "While we don't know with respect to people with dementia -- because they can't tell us [how they feel] -- by extrapolating from people with advanced cancers who have [retained their mental faculties], by and large, when they can no longer eat, they [don't suffer as a result]," says Gillick. "Some feel a degree of thirst, which can be assuaged by giving them ice chips or moistening their lips."
And tube feeding may actually inflict suffering. According to Cassel, it causes complications, particularly in patients with advanced dementia. "If they aren't upright when the feeding occurs, they can aspirate into the lungs, which then causes pneumonia," she says. "There are also bowel effects, and if somebody is incontinent it creates enormous problems with hygiene and quality of life."
Also, patients with dementia often are restrained in order to prevent them from pulling out the tubes. In one study, Gillick cites the restraint rate was 71%. "The experience of being tied down is distressing, even to persons with severe dementia, and it often results in agitation, which, in turn, may lead to the use of pharmacologic sedation," Gillick writes.
And contrary to the conventional wisdom, neither Roman Catholic nor Orthodox Jewish strictures suggest tube feeding in cases of advanced dementia, says Gillick. The Roman Catholic position calls for tube feeding only if it "is of sufficient benefit to outweigh the burdens involved to the patient," according to the National Conference of Catholic Bishops. Orthodox Jewish tradition "rejects interventions that cause or prolong suffering," writes Gillick. "Equally important, many Orthodox Jewish thinkers regard the dying person in a special light and argue against 'impediments to dying' in the final year of life."
Patients and doctors alike are misinformed as to the risks and benefits of tube feeding. One study of 421 mentally competent residents found that only one-third would want tube feeding if they were unable to eat due to permanent brain damage, writes Gillick. But 25% of this third changed their minds when informed they might have to be restrained.
Nonetheless, family members are "given the impression this is something they have to do, and a large number of physicians feel this is required," says Gillick. In one study of almost 1,500 doctors and nurses, 45% of surgeons and 34% of other physicians said that artificial nutrition and hydration should continue even when all other forms of life support have been stopped.
Legal and regulatory measures that act as barriers to removal of tube feeding in patients with advanced dementia would be nullified if advanced dementia were viewed as a terminal illness, says Gillick. Federal regulations require that nursing home residents have "acceptable parameters of nutritional status ... unless the resident's clinical condition demonstrates that this is not possible."
In a U.S. Supreme Court decision, "the majority of justices equated artificial nutrition and hydration with medical therapy," Gillick writes. But the Supreme Court also "upheld the right of state legislatures to require that a surrogate decision maker for a patient provide evidence that a decision reflects the patient's previously stated preferences." Two states, Missouri and New York, place the burden on the surrogate to show the patient would not have wanted tube feeding.
Gillick tells WebMD that these laws should not be applied to patients with advanced Alzheimer's. She says that Robert Katzman, MD, first argued in 1976 that when people with advanced Alzheimer's die of malnutrition, dehydration, or pneumonia, "they are really dying of their Alzheimer's disease [because] they wouldn't have had [those conditions] had they not had Alzheimer's disease."
But talking to people at ground zero, those who have to actually make the decisions about their loved ones, the decisions are "not so cut-and-dried" according to Gary Barg, the publisher of Today's Caregiver Magazine, who has a grandfather in late-stage Alzheimer's dementia. After "fractious" and agonizing discussion among his family about putting his grandfather on a feeding tube, he says the family decided to go ahead with it, even before learning the doctor planned to do it anyway.
"It's easy to talk from a distance. It's easy to talk from a policy-making [perspective], either medical, or insurance, or legislative point of view. ... When I started knowing what a caregiver was, there were those who were saying 'Well, it's just a person pushing a wheelchair' [or] 'It's a loved one, it's what you have to do.' Yeah, well, go through it," Barg tells WebMD.
Another person who has 'gone through it' is Sue Rosen, of Phoenix. She made the decision to put her mother on a feeding tube, who then survived almost 10 years, dying at 95. Rosen, whose mother had dementia brought on by Alzheimer's, had stopped eating but was still lucid, to some extent. "She knew who I was, I could talk to her, but of course, she didn't know who the President of the United States was, or what day it was ... she absolutely could enjoy things. She could sing a song, all those kinds of things," Rosen tells WebMD.
She says she and her brother, who is a doctor, made the "easy" decision to put in the tube. Otherwise, "it felt like murder," Rosen says. She says they both now agree they would have done it again. Had her mother been deeply demented from the beginning, as she ended up a year later, Rosen says, "I don't think we would have made the same decision."
Anne Serra of Tucson, Ariz., made the decision to put her mother-in-law on a feeding tube, because "if you don't put it in, then what does that mean, you know? She's gonna starve to death." Serra says her relative still had some "life left," and resisted the tube, trying to pull it out. She says they tried mittens, to no avail, then used a special chair that made it impossible for her mother-in-law to get at the tube. At that point, an "amazing thing" happened.
"She just turned around," Serra tells WebMD. "She actually tried food, and started swallowing again, so we took the stomach tube out, and she was good for another year. So that really validated, I think, that we did the right thing by putting it in."
All the people contacted for this piece agreed on one thing. The time to talk about a person's expectations, should they get sick, is before an illness sets in, or before it gets too bad: Face the prospect of death. Rosen agrees that looking at Alzheimer's as a "terminal illness" at some point may help with the decision-making process.
Gray-Davidson tells WebMD, "Very often what I think families are being asked to deal with is the inadequacy of us as a society, and the focusing of modern medicine, on the idea that all disease can be conquered."
Still, Rosen tells WebMD, even though she never had any illusions that her mother's condition would reverse, she thought maybe her mother could continue living on the edge of lucidity. "The thing about Alzheimer's ... is you never know what tomorrow is," Rosen says.
"Luckily, my mother took the whole situation away, she got aspirated, pneumonia, and they took out the feeding tube, and she died before we had to figure out what I was going to do next," Rosen tells WebMD. "So she took me out of it, she saved me. ... I cry when I say this ... because she knew she didn't want me to go through that pain of having to make that decision because I couldn't make it, I just couldn't."
© 2000 Healtheon/WebMD. All rights reserved
Also
March 1983 IV/7
TUBE FEEDING--ROUTINE NURSING CARE?
Recently, two physicians in California were charged with felony murder because they withdrew life-support systems from a brain-damaged patient. Because there was no hope of recovery, with permission of the family, the physicians removed the respirator. When the patient continued breathing without assistance, tubes feeding him nourishment and water were also removed. Six days later, the patient died. As any Perry Mason fan knows, in California before a murder trial a preliminary hearing is held to determine whether there is sufficient evidence to proceed with the trial. At the preliminary hearing, the judge determined that the evidence was insufficient and dismissed the criminal case. Civil charges of medical malpractice are still pending.
At present, removing a respirator from a comatose patient who will not recover has been accepted as standard and ethical practice in medicine. But removing artificial methods of providing food and water when the patient is in the same, condition is not so readily accepted. Recently in NEJM (1) a physician recounting this crisis of conscience in caring for elderly people states, "In our nursing home, for example, there is a middle-aged woman who has been comatose for five years as a result of an accident. Although there is no meaningful chance that she will ever improve, she is certainly not "brain dead" and is supported only by routine nursing care that consists of tube feedings, regular turnings, urinary catheters, and good hygiene; she is on no respirator or other machine" (emphasis added). For some medical professionals then, tube feeding patients who are in an irreversible coma is considered standard and proper treatment. But is this an ethical conclusion? Has the practice of using tube feeding, regular antibiotics to avoid infection, and urinary catheters resulted from an ethical analysis of the situation or from a false supposition that physicians must "do everything possible?"
The Principles
Medicine aims at preventing sickness, restoring health, and prolonging life. About this there can be no mistake. But ethical health care professionals realize that they are to prolong life in a manner that is consistent with the value system of the patient and the ethical standards of medicine. In the value system upon which medical care is based, prolonging the life of a person who is irreversibly comatose is not considered a value for the patient nor for the physician. (2) Mere physiological existence is not a value if there is no potential for mental-creative function. True, it is often difficult to determine if the comatose condition is irreversible. When there is a reasonable doubt about the patient's condition and there is some hope that he or she might recover, then prolonging life through life-support systems is indicated. But if the reasonable doubt does not exist, then the ethical decision is to let the patient die. When this decision has been made, then the goal is to keep the patient comfortable, avoiding suffering and pain. For this latter purpose, analgesics may be given even if they have the indirect effect of shortening life. (3)
The Case in Question
When the decision has been made to allow the patient to die, does feeding nourishment and water through tubes constitute a life-support system or is it rather a means of keeping the patient comfortable? Hydration of some type seems necessary to keep a person comfortable. If tube feeding is the only way to accomplish this then it seems to be in order, But is nourishment required? In many cases, the patient is actually dying of a malfunction of the digestive system and this malfunction is obviated by a life-support system, such as tube feeding. It seems then that tube feeding could be withdrawn from a patient, when a decision has been made to let him die, because it is a life-support system rather than a comfort device. If the objection is raised that the patient may suffer hunger or "starve to death," two responses are in order: (1) the pain may be alleviated through analgesics; (2) the patient is not starving to death but is dying of a malfunction of the digestive system and it is time to let nature take its course.
Perhaps the effect of tube feeding will be understood more clearly if we compare it to the use of the respirator. When a decision has been made to allow a patient to die and the respirator is removed, the patient will die due to lack of oxygen (lack of cardiopulmonary function). Ethically, the decision to remove the respirator is justified because there is no longer any responsibility to prolong life. In like manner, nourishment by artificial means may be removed. The patient will die because he cannot assimilate food by natural function just as the person on the respirator cannot assimilate oxygen by natural function, What has been said about the respirator and tube feeding is true of other life-support efforts once a decision has been made to allow the patient to die.
If tube feeding can be withheld from an elderly person after a decision has been made that life need not be prolonged, why not allow the withholding of food from a newborn infant with Down's syndrome and claim that it would die of natural causes? To withhold food from a Down's syndrome child would be unethical because it is the natural process for infants to receive food from others. A Down's syndrome child is not dying due to a pathological digestive system. Moreover, making a decision that a child should be allowed to die merely because it has Down's syndrome is unethical because he/she has potential for mental-creative function. Wouldn't this interpretation of tube feeding for comatose patients cause undue concern if publicized by health care professionals? Yes, I think so. For this reason, it is the responsibility of the ethicists to make known that once the decision has been made to allow a patient to die only comfort therapy is in order. Twenty-five years ago many did not accept withdrawal of a respirator as "standard practice." Now it is accepted as ethical medical practice when the decision has been made to allow the patient to die. Through discussion in the public forum, the same acceptance would develop in regard to tube feeding and other procedures.
Conclusion
In light of the limited resources and some trends in health care, we must make sure that people are not allowed to die merely because they are elderly. But, on the other hand, we must also provide that the lives of elderly people are not extended unduly because the people involved, families and health care professionals, are hesitant to make accurate ethical decisions,
Kevin O'Rourke, OP
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Footnotes
1. David Hilfiker, MD, "Allowing the Debilitated to Die;" NEJM, 3/24/83; p.716-719.
2. For more on the ethics of allowing to die, cf. Kevin O'Rourke, OF, "Allowing a Person to Die;" Critical Care
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