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.
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.
This is such an important topic and message. End of life means dwindling, plain and simple. PEGs in nursing home patients are not a kindness and they prolong life that naturally wants to "journey" on.
ReplyDeleteI really cannot think of any situations in an elderly patient that a PEG should be inserted.
Thanks, Toni. I assume there is the same 'rush to PEGs' in California as there is here in Ohio. I have a sense that everyone knows the game here, but the voices for sober moderation are few and lonely.
ReplyDeleteDr. Kirsch:
ReplyDeleteI would add to this to be prepared with an end-of-life plan that is communicated far prior to the time it may be needed as well as advance directives. This takes the undue burden off of the health care providers, caregivers, and other loved ones to make these difficult decisions in the midst of crisis.
There are a few online tweetchats that discuss these issues and are worth a few minutes of anyone's life. #EOLChat on Thursday evenings at 8:30pm CST and #DWDChat on Thursday evenings at 5:00pm CST are two that are worthy of participation. Don't forget National Healthcare Decision Day #NHDD - focused on advance directives - this April 16, 2012.
Excellent post! I enjoy your authentic approach to health care and communication.
Lisa
Thanks, Lisa, for your kind comments and the availability of discussion groups to assist folks on end of life issues and care. Of course, you are spot on that if these issues are addressed and resolved in advance, that everyone wins.
ReplyDeleteAs a nursing home administrator I feel we the medical profession does a huge injustice to our population by allowing tube placement. Families are torn and looking for answers. The answer from the physician should be, "No you don't want to do that. What your loved want if they could say. There is a true quality versus quantity issue." Yet CMS just passed another regulation for nursing homes to be enforced this year fining us for patients who have tubes they deem "inappropriate" and you have them for more than thirty days. Please as physicians - stop to madness!
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