Use of Feeding Tubes in Advanced Alzheimer’s Disease and Dementia Patients-Part I

(12/15/05)- The matter of feeding tubes has come into the limelight once again in connection with the right to life issue. Before going into the issue let us look at the history of feeding tubes in this country.

On June 12, 1979 the first feeding tube was inserted into a 10-week-old child with a swallowing impediment at the University Hospital in Cleveland. Dr. Michael Gauderer a pediatrician and Dr.Jeffrey Ponsky, an endoscopist implanted the first PEG which stands for "percutaneous endoscopic gastrostomy" nozzle.

About 300,000 people have received them this year, according to Dr. Gauderer, nearly double of that a year ago. In 1988 Medicare paid for 61,000 of the procedures and this number grew to 121,000 by 1995. Medicare considers PEG feeding to be skilled nursing, while hand feeding is not, so it is reimbursable at a greater amount. In actuality a nursing home can have several patients being fed simultaneously on feeding tubes while a nurses aide must individually feed each resident one at a time.

To read more about how the feeding tube issue has become involved in the right-to-life issue, please see our article "Advanced Directives- Living Will and Durable Power of Attorney for Health Care"

(1/22/00)-Within the last 4 months the two most prestigious medical research journals, the New England Journal of Medicine and The Journal of the American Medical Association, have published articles questioning the use of tube feeding in people with advanced cases of Alzheimer’s disease and dementia. This appears to be a stance favored by many experts in the dementia field. Figures indicate that presently about 36,000 dementia patients have feeding tubes.

The research in these articles involved a review of the medical literature and indicated that there was no evidence that feeding tubes helped most patients. Additionally, they found that this procedure could be harmful in a number of cases.

The iatrogenic effects include infection, diarrhea, and bloating. Another common occurrence is that the patient who feels uncomfortable with a feeding tube will pull it out. This may in turn result in the patient being placed under restraint.

The NY Times (Jan. 20, 2000) quotes Dr. Stephen McConnell, a spokesperson for the Alzheimer’s Association which was not a participant in these studies: "This is a position we actually took years ago, that it is ethically permissible to withdraw or withhold hydration and nutrition from somebody in advanced stages. Now there’s some scientific evidence that tube feeding doesn’t do what everybody thinks, prolong life or make people more comfortable."

Dr. McConnell is further quoted as saying that the tube is often used for the convenience of nursing home staff. "The problem in homes is that it is costs more to pay a person to feed a patient that it does to just jam in a tube and walk away." This statement arises because of the amount of time that the nursing home staff member would have to spend trying to plead and cajole such a resident into taking even a slight amount of nutrition. When you have several such residents in one wing of the home the staff members could be tied up for many hours per day trying to feed the residents.

Then there is the question of insurance payment. Insurers pay for a feeding tube, but do not pay to have a staff member feed a resident. The former is a reimbursable medical procedure and the latter is an activity of daily living, not separately reimbursable because it involves a functional activity.

Dr. Muriel Gillick wrote the article in the New England Journal of Medicine. Dr. Gillick is associate professor of medicine at Harvard and staff doctor at the Hebrew Rehabilitation Center for the Aged in Boston. She compared tube fed patients with non tube fed patients and found that they do not live longer, nor do they show signs of being better nourished than the non tube fed patients. She also reported that the tube fed patients have lung problems from choking on their own saliva and stomach secretions. Dr. Gillick indicated that elderly people with advanced dementia who have eating problems die within six months, whether they have a feeding tube or do not have a feeding tube. It is Dr. Gillick’s feeling that loss of appetite in Alzheimer’s disease is a sign of the final stage in a fatal disease. Such terminally ill people "not given food or water did not suffer hunger or thirst and could be kept comfortable with ice chips and swabs to moisten the mouth and lips. Dehydration leads them to lapse into comas and die peacefully…" (NY Times, Jan. 20, 2000)

Harold Rubin, MS, ABD, CRC, Guest Lecturer
January 22, 2000

Editorial Comment:

As readers of this web site may know, our mother spent four and 1/2 years in a nursing home (see article on How to Select a Nursing Home). Prior to entering this home, she spent 39 days in a hospital, diagnosed with pneumonia and a possible basil ganglia stroke. The doctors and physical therapists felt she had little chance for recovery. As a matter of fact, the hospital had no physical therapy sessions being given to her because of her age and her physical condition. Since she stopped eating, they placed a feeding tube in her stomach and she was tube fed 17 hours a day. If you have been in this situation, you are aware of the fact that the hospitals are quite anxious to have such patients discharged from the hospital as soon as possible. As her discharge became imminent we were taught by a hospital staff member how to operate and administer the feeding tube to our mom. We were faced with the prospect of either having 24 hour a day, 7 days a week care being administered to our mom or having her admitted to a nursing home. Since both of us worked we chose the nursing home route, not an easy choice. In retrospect, both of us agree that we are glad we chose the nursing home route.

Since she was found "not a likely candidate for physical therapy", we asked for and received permission to try and teach her to walk again. We would put her in a wheel chair and take her to the day room. We would have her stand and walk with one of us holding her and the other one holding her feeding tube. She learned to walk again in the hospital and so she was able to walk into the nursing home with her feeding tube attachment.

The home would not lower the amount of time she was on the tube, until we finally broke through their way of seeing our mother’s situation. We got them to wean her off the tube and start eating. She was able to have an active life in the nursing home for close to four years with no feeding tube. She wandered around the grounds of the nursing home, read her NY Times everyday in the library and greeted her visitors as if she were in her own home. She was once again able to lead an active life in the home.

Three months before her death, she stopped eating, developed pneumonia and just failed to thrive and developed multiple other conditions. The medical staff placed the feeding tube in her again, but this time she would not respond. She was ready to die because she could no longer have any semblance of the quality of life she had in the past. Once a resident of a home has decided that he/she has lived long enough, it becomes only a matter of time.

Please remember that if the resident has executed a living will, the named designee will have a choice whether or not to have a feeding tube administered to a resident. It is also quite important for that designee to check with the individual home as to the home's policy in regards to the discontinuance of the feeding tube. Will the home discontinue the feeding tube if there is no improvement in the quality of life of the resident?

Our mother died ten days before they were to remove this tube. She had lived along and fulfilling life. We had researched the effects of dehydration and starvation and were comfortable with the researchers who felt it would not be painful.

The situation with our mother is different than the terminally ill dementia or cancer case. She was in neither of these cohort groups. We have seen all the side effects of tube feeding and believe it has a place in medicine, but these situations are quite selective. Nursing homes must make every effort to afford their residents the quality of life most near what the average person has and this means using their manpower to see that residents are fed in a normal way even if it requires spending inordinate amounts of time with the resident. Reimbursement should not be the guiding force in proper medical and rehabilitative treatment.Evidentiary medicine, such as the studies in JAMA and The NEJM, have to be the guiding force in quality assurance within the medical setting. Any other stance represents discriminatory practice against the sick and frail elderly.

See: Tube Feeding in Elderly Demented Patients-Part II


Harold and Allan Rubin
updated December 15, 2005

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