“To be or not to be, that is the question…”

Watching a loved one die is a helpless feeling and it’s normal to attempt to prolong life by trying life-sustaining measures even in the face of futility. In end-stage Alzheimer’s disease a common dilemma caregivers may face is “Should we put in a feeding tube or let Mamma starve?” This question begs an answer when Mamma stops eating, loses weight and her skin starts to break down. It is a fact that poor nutrition is a culprit in weight loss and pressure sores. It is also a contributing factor to poor immune response and higher risk of infection.

By bypassing the mouth a feeding tube makes it possible for nutrition and medicine to be given directly into the stomach or small intestine. It is also used to prevent choking and aspiration pneumonia. Most feeding tubes are inserted into the stomach through the abdominal wall – known as a percutaneous endoscopic gastrostomy tube, or PEG for short. Infection at the insertion site is a complication and aspiration pneumonia still a possibility from gastric reflux and aspirated saliva. It can also be very uncomfortable and a confused person may pull it out, causing significant trauma.

I recently heard a physician from John’s Hopkins School of Medicine speak at an Alzheimer’s conference about the use of feeding tubes in end stage AD. Actually, that is what sparked my writing this article. He referred to several published studies that produced some eye-opening results. It seems they concluded that tube feedings did not extend life – in fact, most study participants lived just as long or longer when hand fed; they did not improve the healing of existing pressure sores; and there was no evidence of reduction in infection. I commented that I expected someone dying of AD to naturally stop eating as the body shuts down in preparation for death – the same response non-AD dying persons exhibit.

According to Hospice, when a person is dying body systems slow down, appetite decreases, and food and fluid may be refused. Although he was not a proponent of tube feedings, his response baffled me. He said that if his children stop eating, he knows they are sick, thus implying we should respond the same way to terminally ill AD persons – treat not eating as an illness.

Granted, whenever there is a change in behavior a medical cause should be suspected. But once ruled out, shouldn’t we consider that the person is going through the normal physiological changes inherent to the dying process and support her through this journey of life into the next? I think what bothers me the most about his response is the sterile medical attitude that dying needs a treatment intervention. This attitude ignores the third-self: the spirit. The spirit, or soul, is ‘all knowing’ on a whole other level and remains an integral part of a person even when cognitive awareness is diminished. When a terminally ill cancer-affected person is in the last stage of life, comfort, palliation, and spiritual nourishment are the main concerns – everyone is painfully aware that treatment and cure are not possible. The person is supported through the process and allowed to pass on in comfort and with dignity. Don’t our loved ones with Alzheimer’s disease deserve the same kind of care?

When faced with the dilemma of whether or not to insert a feeding tube we need to ask ourselves: whose needs are we thinking of, our loved one’s or our own? Some intense soul searching must be done in order to avoid making a decision that satisfies the need not to lose her while neglecting her need to move on. We must also examine our personal feelings about death and consult with a Minister, Priest, Rabbi, or other spiritual leader if need be.

Some health care professionals are reluctant to admit someone is close to death and try to forestall it as long as possible, so ask about prognosis and life expectancy. Be sure to ask what the expected outcome is and if inserting a feeding tube will allow your love one to die more comfortably. And of course consider her wishes – is this something she would want done?

It is hard to lose someone – death seems so final – and end of life decisions are not easy, but none are wrong if done for the good of the dying person. We may be able to delay it, but death is a fact of life here on earth and making peace with it is the ultimate in letting go.

Mary C. Fridley