This case is corrected revised from the case which was presented
in the imitation Ethics Committee in the program of a Japanese hospice and home
care study group in Fukuoka.
I will show this case with the permission of the person Mr. Masaru Nishikawa (Osaka University graduate school).
2002 case (1)
92 years old woman. The indication of tube feeding for the advanced Alzheimer's dementia.
The patient's Dementia began when she was 85 years old. After
her son was died, she lived with her daughter in law (68 years old) (suffering
from chronic heart failure) . The patient became bedridden after her hip
fracture, and home care became difficult, so she was transferred to a nursing
Communication with the patient became very difficult from the beginning of this year, she is always sleeping even in the daytime. It is also difficult to become a seating position and it is also difficult to drink a meal from a mouth. The spontaneous digestion decreased, so the mixer food began, but it takes more than 1 hour to feed her with a spoon. It is difficult to give her sufficient amount of ingestion and she lost weight gradually.
The doctor recommended Percutaneous Endoscopic Gastrotomy to the patient. It became popular technique for the patient who cannot swallow well and who is suffering from aspiration pneumonia several times.
But recently, some research were published in famous European and American medical journals about the tube feeding to a dementia patient. They showed tube feeding have no benefit in preventing aspiration pneumonia or prolongation-of-life.
Quote a summary from PUBMED
1) Finucane TE, et al. Tube feeding in patients with advanced dementia:a review of the evidence. JAMA 282:1356-1370, 1999
2) Gillick MR. Rethinking the Role of Tube Feeding in Patients witAdvanced Dementia. N Engl J Med 342:206-209, 2000
3) Meier DE, et al. Hogh short term mortality in hospitalized patients wit advanced dementia: lack of benefit of tube feeding. Arch Int Med 161:594-599,2001
What should the doctor do in these situation?
What should we talk about with the patient's family?
Should we or shouldn't we recommend the tube feeding (especially PEG:Percutanewous Endoscopic Gastrotomy) to the patient's family?
Commentary for this Case from abroad
Howard Brody（Michigan State University）
With regard to the case, I am very strongly persuaded by the evidence that
you mention, that we have been at fault in recommending or even in
tolerating the commonplace use of PEG tubes and artificial feeding generally
in patients with advanced dementia. The lack of benefit documented in these
articles is very significant in showing both that the patients had no
extension of biological survival, nor did they appear to derive any benefit
in terms of quality of life or relief of symptoms. By contrast, the feeding
process appeared to be associated with many medical risks and with a variety
of unpleasant symptoms.
If you think our job as physicians is to make our patients more
while failing to provide them with any meaningful benefit, then it makes
good sense to use PEG tubes in such cases. But I thought that our job in
medicine was to do the opposite of that.
In the US we have effectively brainwashed families to believe
that some good
is being provided by a feeding tube, so it will take some time and effort to
educate the general public in line with this newly accumulated evidence, but
I think we should start the education process as soon as possible and refuse
to abuse our elderly, demented patients any further with this useless
Stuart R. Sprague, PhD（AnMed Family Practice Residency）
Thank you for sharing the news about your clinic and for renewing the discussion of ethics.
I find that the issues you raise in your discussion and that are presented by the patient's situation are frequently encountered in my work in South Carolina. We find that family members sometimes are reluctant not to continue "feeding" their loved one for fear that they will be "starving" them by not authorizing the procedure. The language used tends to give the ethical discussion a framework which is based on presuppositions about what the answers should be without having thought through all the issues carefully. In my work with patients and families I try to use language which does not presume the outcome and which can help all the parties consider all the alternatives and work toward a solution which reflects the patient's values.
A physician who lives nearby was involved in the first use a PEG about 30 years ago. It was developed as a surgical procedure for children. In articles he wrote at the time in the surgery literature and a couple of times since then, he reflected briefly on his moral concern that the procedure might someday be overused and present precisely the moral dilemma you describe. His name is Michael Gauderer, and he is quite passionate about the subject. A search of the Medline database would probably give you references to his work. If you cannot find them, I will look through my files for you.
My experience is that surgeons sometimes have moral reservations about inserting a PEG when they receive a referral in a case like yours. Using an ethics consult when such questions arise may lead to better outcomes for patients. Careful moral reasoning can be a way of reducing such motivations as guilt or regret.
Thanks for submitting a thoughtful case.
Philip Hebert MD PhD FCFPC （Associate Professor Family Medicine University of Toronto）
The situation of patients with advanced dementia & nutrition
remains difficult for many clinicians and families alike. Of
course, some of the problems could be alleviated if we better
elicited patient preferences early in the disease. In my experience,
patients, when asked, are often realistic and prefer no tube
feedings, eg, when their disease becomes advanced & their normal
self is lost.
Assuming that was not done in this case, one should
what the most humane and wise course of action would be for such
a patient. Given the burdens of such feedings (restraints, aspiration)
and the impossibility of restoring this patient's self, I would
not offer a PEG.
Instead I would concentrate on gentle and cautious oral
-- accepting a negative nutritional state that will, in time,
no doubt be inadequate to prevent a catabolic state. A palliative
approach to end-stage dementia is preferable to a 'life-at-all'
cost approach. The latter is not a principle of medicine, is
not what most patients want, and would lead to a variety of cumbersome
treatments that achieve little. Families ought to be involved
in this discussion & the best course of action determined by
consensus. In our institution we have many patients with such
illness & we elicit preference of patient / family on admission.
We also tell them it is institutional practice not to offer a
PEG when thigs become very advanced. This prcatice is accepted
by the vast majority of families.
By the way, I would encourage you all to look at our website
-- we are in the process of putting all our undergraduate medicine
ethics teahcing on-line. Comments welcome as is use of any of
our curricular materials.
Yoo-Seock Cheong, MD, PhD（Professor in Dept. of Family Medicine, Dankook University Hospital, South Korea）
Your new case is very informative to me. I get an advanced knowledge about tube feeding. Basically I agree with Dr. Brody. If tube feeding(PEG) is not effective way to increase quality of life of patient, I won't try PEG for that patient.
PEG procedure is not an ordinary treatment, so if the patient's situation is not reversible, doing that procedure is unethical.
In oriental society including Korea and Japan, Family members usually not want to starve their patient nearby her end of life. If the patient's automomy is impaired due to communication diffculty or low intelligence, but proxys want to feeding patient, I think nasogastric tube feeding is better than PEG. Because it is not invasive and reversible way.
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