Nothing pains me as much or nothing burdens me as much except when I am faced with the decision of putting a FEEDING TUBE device in a human being. One might question: as a gastroenterologist I am trained to do this, I have done lots of them and also it is not that the procedure is particularly more dangerous than any others that I do. Yes, technically speaking it is easy for me, I have not found it more dangerous than many other things that I do in my day to day practice. Yet, at a human level I find it to be extremely difficult.
People who need feeding tube often have lost control over their lives either by stroke, Alzheimer’s, cancer, accidents or other major life-changing events. Lot of them cannot even communicate, living in a state of either in coma or in persistent vegetative state. People who are lucky in such circumstances, relatively speaking, have family members available, in others it might be an administrative decision and even at times a court order.
It reminds me of the very basic helplessness and vulnerability that we have as humans. Perhaps my own subconscious does not like that reminder in such a vivid way. Then again, how do I know I am making the right decision to put the tube in or even in declining in doing so? I know the consequences of not feeding: slow agonizing death, slow dehydration, malnutrition, slow shut down of the vital organs one by one. I also know if I put the feeding tube in, true we have a way of administering medicine and food, but still it may do nothing with relation to the original condition that led to such a situation. Some might say, such a human would still not live the full potential of life. Yet, who am I to make a decision about what quality of life another human should have?
In times like this I feel the full burden of human limitations, imperfections and lack of prescience. But I know that paralysis is not the answer either. I have to make a decision as a physician based on my past and present knowledge and to the best of my judgment, or, using the language of law, “using reasonable medical judgment”.
Again, not all cases are so difficult. In some cases, perhaps a family or a friend would tell me a little story about such a person that sheds light to her choices of life, what she wanted, what he or she liked and disliked in the past. Sometimes, patient will leave a letter or a will clearly delineating what she would want. Easiest one will be the one who has a loving family member and who can relate to the disabled personal at a very emotional level. At times I will have supportive kin or caregiver. At times I just have to make the decision summoning all my inner strengths. At times even in the midst of such tragic cases, there are happy endings, not all are gloom and doom.
So let me finish my current story with such a fairy tale but true story: just last week, such a human patient was brought to my office from nursing home accompanied by his brother. In my office, the human patient was in wheel chair, not making any eye contact, he had words but not purposeful and neither making any sense to a human with limited perception like me, a doctor. The nursing home staff and brother told me that he has been living in nursing home after the major heart attack he had about a decade ago and went to cardiogenic shock. Although he was revived, due to lack of oxygen, his brain suffered irreversible damage and he was not able to freely move or take care of his daily needs anymore. Since that time he has been living in nursing home and doing reasonably well. He seemed to get across his brother very well and each week, the brothers will go out and eat and watch a movie together. Sometimes after the matinee show, the two brothers will go for a wheel chair stroll on the nearby shores of Gulf of Mexico and Galveston Bay. At the end his brother will drop him off.
For last three months, he developed difficulty of swallowing food. He seemed to be hungry but just not being able to eat. Nursing home and brother wanted to give him some times thinking it could be a temporary situation, but his condition went downhill without any reversal leading to more weakness and severe weight loss.
I could do no meaningful communication with the patient himself and on my physical examination he had all the telltale signs of recent weight loss, dehydration and malnutrition. I found no contra-indication of placing the feeding tube. Technically and medically speaking, he was an appropriate candidate for Percutaneous Gastrostomy Tube or stomach feeding tube placement. At this time only issue to reconcile with the ethical and human issues associated with the medical procedure. In another word to put myself in the shoes of the patient and sort out if the patient would have really wanted it or not or is it in the best interest of the patient.
I wanted to gain more insight into the patient, his past and present. I started speaking with the brother, the only line of communication I had with the patient. He reminisced from the childhood memories of their growing up together in the expansive geography of West Texas. The two brothers grew up in a farm, with nearest neighbor eighteen miles away. They spent times in fishing, hunting and also getting into mischief. In such a desolate land, the two brothers were best friends. When his brother, our patient, had the heart attack and subsequently became disabled, the other brother brought him back from West Texas to South Texas, a distance of 10 hours of driving and settled him in nearby nursing home. There was no question in my mind about the closeness of the two brothers and their emotional relationship.
In the last part of our discussion, I posed him the most difficult question looking deep into his eyes, “Do you think your brother would have wanted this medical procedure if he could speak with me or make his own independent decision?” A moment of silence, but then the answer was direct and soaked with tears, “Doctor, although he is disabled he enjoys his life, he likes to eat out and watch movies with me every week. And the best thing for him is the light moments in the movie as he is sitting next to me; he breaks out in laughter, chuckles like a child, doctor you ought to see his face as it shines up with flickering light of movie projector once in a while! Yes doctor, I very much think he would like his life back and he would like to enjoy those movies for many more times to come.”
I was speechless; my tearful eyes met the brother’s tearful eyes in unison. On the Physician Order From, in my shaky hand and customary bad handwriting I wrote: Schedule and Consent for EGD with PEG- gastrostomy feeding tube tomorrow. They left after a short time with instructions for tomorrow and I sat on the exam room alone before being called out by my medical assistant.