Q: My mother-in-law has been suffering from dementia for more than 10 years. She is relatively young, not even 80 yet. We all thought initially that her forgetfulness was due to aging, but she continued to get more and more confused. She has not talked much over the last two years and we now have 24-hour live in help for her. She was admitted to the hospital a week ago with fever. Doctors told us she has pneumonia because she cannot swallow and the food went the wrong way. They want to put in a tube to her stomach to feed her. My husband is beside himself. He is the only child. He does not know what to do. We have been talking for two straight days. If we do not agree to put in the tube, she may starve to death. If we do, we will prolong her suffering. I know that you have many patients like my mother-in-law. Can you offer us some advice? — Martha

A: I cannot imagine what your husband and you are experiencing right now. The decision whether to put in a percutaneous endoscopic gastrostomy (PEG) tube to feed a patient with advanced dementia is in my opinion one of the most difficult choices a family member has to make.

Let me offer you some help with the scientific overview of the risks and the benefits of this decision. Please be aware, however, that there is an emotional, spiritual and cultural aspect of this decision I will not be able to help you with, because the only person who could really decide here is your mother-in-law.

She cannot do it now because of

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her dementia. If, however, she has EVER talked about her preferences in life and if you both think you know her choices this may be extremely helpful. Obviously, having all these preferences in writing in the form of a Living Will is best. I suspect that you do not have guidance from a document like a Living Will to help you.

Losing ability to swallow is the natural progression of the brain deterioration we see in dementia. Patients first are not able to use utensils, relying on "finger" food, and later will start choking on various consistencies of food. Medications used for agitation and anxiety observed sometimes in advanced dementia may make people sleepy, making feeding even more challenging. While being treated in the hospital, for an acute illness one may be lethargic just from being sick, so this will contribute to the inability to swallow as well.

Initially, the PEG procedure in patients with very advanced dementia was thought to not only help with nutrition, but also to prevent food from going to the lungs (aspiration pneumonia), help heal wounds and to prolong life and its quality. Systematic review of the existing literature has shown, however, that PEG placement does NOT help with many of the issues it is supposed to.

While the PEG placement procedure itself is considered low risk (1 percent mortality), mortality in the 30 days following PEG placement is around 22 percent. Fewer than half of patients survive for a year or more and very few return to living in their own homes. PEG-related complications are reported in up to 70 percent of patients, leading to hospitalization or death in 3 percent to 11 percent of cases.

Aspiration pneumonia, the main PEG complication, is reported in about 20 to 30 percent of PEG-fed patients and is frequently a terminal event. There is very little objective data available on quality of life after PEG, but since tube feeding is associated with increased restraint use, social isolation, increased stool and urine production, and sometimes nursing home admission to manage the feeds, the impact is likely to be negative. Studies looking at the PEG decision-making process in older adults concluded that the decision was often made at a time of crisis, with incomplete information and no reasonable alternative to tube feeding being perceived.

Furthermore, only about half the surrogate decision-makers were confident that the patient would have wanted a PEG; a third regretted their decision to place the PEG and only a third would opt to have a PEG themselves. At the end, however, the most important question is: what would a given person prefer? For some, life itself is the most sacred and for them PEG may be an option. Others would choose quality over duration of remaining life and for them returning home with attempts to feed only if desired, even if another case of pneumonia may occur, is a better option. There are no right or wrong answers here. Just carefully thought through choices. I hope your husband comes up with a decision he will be comfortable with.

Dr. Beata Skudlarska is a Bridgeport geriatrician. Send questions to Bridgeport Hospital Center for Geriatrics, 95 Armory Road, Stratford CT 06614 or geriatricmd@aol.com.