Okay, readers, how many of you desire to have a feeding tube inserted into your belly one day? Some of you? A few of you? All of you? Not me, that’s for sure. So, if there comes a time when I cannot speak for myself, let this blog post serve as a statement of my philosophy that I do not wish to be subjected to everything that medicine may have to offer. If I am enjoying no meaningful life, and if I am not giving pleasure to others…
I placed yet another feeding tube (PEG) in a patient this week. This is often an unsatisfying experience for me as I am not always serving the patient’s interest. Usually, the patient is not capable to express his own views and the decision is properly delegated to the family or to a designated medical power of attorney (POA). In this instance the tube was medically indicated and I reviewed the procedure and the alternatives with the 3 daughters in a conference room.
The daughters were uncertain how to proceed. The ladies were clearly vexed. One of them was the POA. I counseled them to take more time to weigh the options. While the decision was difficult, the situation was not emergent and they had the luxury of time to deliberate. I reminded the POA that her charge was not to make a decision based on what she felt was in her mother’s best interest, but to make the decision that her mom would make if she were able to do so. This distinction is critical if the patient’s autonomy and medical ethics are to be respected.
Hours later, the daughters all agree to proceed with the PEG, and I did so.
Luckily, there was a consensus, as it would be very problematic to proceed if there was a split decision, even if the POA has the legal right to decide. Indeed, if this occurred, I would make every effort to facilitate a unanimous decision, and might recruit other professionals to assist in this effort. It is easy to forecast the family tensions that might ensue when there is discord on how to proceed. There are times, however, when a consensus is impossible, and the POAs directive must be followed. In such cases, at least there is a POA to make the difficult decision. When there is no POA, and the family members are torn, then the situation is delicate and difficult.
Most of the PEG tubes I place are in demented elderly individuals who reside in nursing homes. For many of them, these tubes are a rite of passage and provide a convenient portal to administer nutrition and medication. Are they truly necessary? Certainly not. Indeed, there have been numerous medical studies in recent years that conclude that individuals with advanced dementia do not benefit from feeding tubes. Moreover, the notion that feeding through PEG tubes provides comfort to patients has been challenged.
Resources are limited. If every nursing home patient had a dedicated aide who could devote the time necessary to help patients eat, then they wouldn’t need a gastroenterologist like me to violate them. In addition, eating food in the conventional manner provides gustatory and social pleasures. Do we want to deprive a patient of any of life’s remaining pleasures, when so few of them are remaining?
There is an aspect of the PEG procedure that does give me pleasure, and I experienced it this past week. I had placed a PEG in a rugged and vigorous man 2 months ago who had a temporary impairment in his swallowing function. This week, he came to my office for me to remove the tube. This is a rare event as most PEGs are placed for indefinite use.
A Deep-dive Into Specialty Pharma
A specialty drug is a class of prescription medications used to treat complex, chronic or rare medical conditions. Although this classification was originally intended to define the treatment of rare, also termed “orphan” diseases, affecting fewer than 200,000 people in the US, more recently, specialty drugs have emerged as the cornerstone of treatment for chronic and complex diseases such as cancer, autoimmune conditions, diabetes, hepatitis C, and HIV/AIDS.
Many hospitalized patients are advised to undergo PEGs when a swallowing study demonstrates dysfunction. My suspicion is that many of these folks have had this ‘dysfunction’ for years, and yet have managed to get through thousands of meals over the years without loss of life. In these cases, the PEG tube can be justified, but may not be truly needed.
Obviously, many PEG tubes are absolutely necessary and should be placed. It’s the rest of the PEGs that I’m lamenting over. Ask your gastroenterologist if he has ever placed an unnecessary PEG tube. If he says no, then whip out the polygraph equipment.
My advice? Make sure you have a living will with a designated medical power of attorney who will reliably act on your behalf, should the need arise. Otherwise, you might end up going down the tubes.
