Q. Hello Dr. C. I have a difficult decision to make regarding my ninety-seven-year-old mother. Although she has had her health problems over the years, she has managed to live independently until now. She was recently stricken with a brain hemorrhage which has left her unable to speak or swallow safely. She is awake but poorly responsive to any questions. At times she is not aware of my presence. She can take small amounts of nutrition by mouth, but I doubt it is enough. The doctors did a swallowing study and determined that she is at moderate risk for aspiration. One doctor suggested a feeding tube that can be placed with acceptable risk. He called it a PEG tube. A second physician offered an opinion against the feeding tube. He stated that my mother would not derive much benefit and that we should feed her cautiously and let nature take its course. I am very concerned that the physicians have such different opinions on the matter. Ethically and medically, I would think they would be of the same opinion. At least then I could decide more comfortably what is probably the best thing to do for my mother. In this situation, how can I possibly make a decision with such uncertainty in the doctors recommendations?

A. I am sorry you and mother are in such a situation. I gather that you and your mother did not have an opportunity to discuss her feelings regarding artificial life support systems such as tube feedings. This would be an advance directive and would have helped all concerned. At the present time, fully ninety percent of adults do not have advance directives to guide family and physicians in these decisions when the patient is unable to provide the answers you seek on her behalf. From an ethical point of view, the most important factor is the decision of the patient. Since you are her surrogate and must decide for her, there is little chance you can be comfortable with whatever you decide, but it may be helpful to understand some of the following facts regarding tube feedings. First, physicians and family members wish to do what is in the patients best interest. In your case, the first physician may hold the belief that tube feedings improve nutrition, prolong life, reduce the risk of aspiration, and improve the quality of life for the patient. In a survey of physicians regarding these matters, the vast majority supported the above merits of artificial feedings. The medical literature however is notably negative or equivocal regarding each of these purported benefits. The second physician is likely of the opinion that the risk of aspiration of oral secretions or feeding material into the lungs is not reduced by placing a feeding tube. In recommending that you should let nature take its course you may come to the conclusion that such a recommendation is harsh and even callous. It may not be at all. If your mother is allowed to take as much nourishment as she can and it is enough to sustain her, she will have managed without an artificial system of dubious merit. If she cannot sustain herself, she will likely die peacefully.

Dehydration is not painful and she will not feel hunger pains as some fear. True, she may die of the consequences of her brain hemorrhage. A feeding tube would not have prevented this unfortunate outcome. It is most important for you to understand that you are not hastening or contributing to any adverse outcome by declining the opportunity of placing a feeding tube for nutrition or fluids. I would like to make an additional point regarding the differing opinions of your doctors. While most physicians hold to the belief that a feeding tube may help their patients, most physicians would decline a feeding tube for themselves were they similarly severely ill. This reflects most physicians intense efforts to try anything that might help the patient. Clearly, doctors need to be better educated, as do patients, about the limited merits of feeding systems for patients with terminal neurological illnesses. Regarding the swallowing study, some important information regarding your mothers condition was obtained. While she is at increased risk for aspiration, she may be able to take nutrition relatively safely by following the recommendations of the swallowing specialist, i.e. thickening the food, not attempting feeding when very fatigued or sedated, and having her fed only in an upright position if possible. These and other precautions are commonly and successfully employed to the patients advantage. Finally, it is necessary to comment on the role your mothers age may play in the decisions regarding life support systems. Suppose your mother had an advance directive stating, If I am ninety-seven years old and need life support such as a ventilator or emergency surgery and cannot speak for myself, I want you to pull out all the stops and do everything possible to give me a chance to reach the crisp age of one-hundred years old. In this situation, you and your doctors have an ethical obligation to follow her advance directives. If the reality is that your mother at her age would have said, Dear, I dont know what the future holds. I trust you will do whats best, she has placed these decisions in your hands. She has every confidence in your decisions. I suspect she knows whats right.

>