What five things can physician groups agree will not help and may harm patients?
This is the question posed to physician professional organizations in an effort to help patients avoid harm. Twenty-six medical groups, from the American Academy of Allergy, Asthma & Immunology to The Society of Thoracic Surgeons, polled their members and came up with a list for each specialty. Interestingly, two different groups listed the same treatment at the top of what is to be avoided. These lists were just published last month.
Both the American Geriatrics Society and American Academy of Hospice and Palliative Medicine ranked feeding tubes in advanced dementia patients as the number one treatment to avoid. Specifically, number one of both lists is, “Don’t recommend percutaneous [through the skin] feeding tubes in patients with advanced dementia; instead, offer oral assisted feeding.”
I have blogged about this before. The research is clear. For patients with advanced dementia, like end-stage Alzheimer’s, feeding tubes offer no benefits and increase the burden of living.
Often, these patients have increased difficulty eating as the disease progresses. The quantity of food they take in declines and they lose weight. They can choke and get food in their lungs that can possibly turn into aspiration pneumonia. These problems are common at the end of a long decline in this sad disease process.
Mistakenly, some medical professionals recommend a feeding tube when these expected eating difficulties arise. They might say, “Your mom is having eating difficulties and we are worried that she is going to lose weight and maybe get pneumonia. We recommend putting in a feeding tube to prevent these things from happening.” THIS IS NOT TRUE! They may even say, “You can’t let your mother starve to death. Let us put in the feeding tube.” DON’T BELIEVE THEM! There is nothing in medical research to back up what they are telling you.
I want to emphasize that what I am talking about here applies to dementia patients. Feeding tubes may be very helpful to others like some stroke patients or survivors of throat cancer. Consult with your physician to see if this research on advanced dementia and feeding tubes applies to your case.
Tube-fed advanced dementia patients do not live longer than carefully hand-fed patients. I used to tell families that putting in the feeding tube only prolonged the dying process. I WAS WRONG! In one study a group of surgeons assessed 41 advanced dementia patients who were experiencing eating difficulties. All 41 met the criteria that have, in the past, led to a recommendation for the insertion of a feeding tube. The tube was refused by 18 families. Both groups (tube-fed and hand-fed), on average, died within about the same amount of time. Putting in a feeding tube did not add one day to the life of these patients but made them more uncomfortable and actually might have caused them harm.
Tube feeding does not reduce the risk of aspiration pneumonia. In fact, some studies show that it increases the risk. These patients can be fed orally with careful hand feeding. It takes skill, time, and patience, but it can be done.
Interestingly, there is a wide difference in this country in the frequency of use of feeding tubes for severely demented patients. On average, 21% of advanced dementia patients in the United States have a feeding tube. But look at the different rates of use:
On the low side:
- Wyoming only 4% use.
- Montana, New Hampshire, and Maine all have 5% use.
On the high side:
- Alabama has 34% use of feeding tubes for advanced dementia patients.
- Hawaii has 36%.
- The District of Columbia has 45% use.
How do you explain such wide use of a treatment known to offer no benefits and cause harm to the patients who get them? I say these tubes are put in for cultural, emotional, and spiritual reasons. It cannot be for medical reasons. In places where use of feeding tubes is high you may be going against the cultural norms to refuse the feeding tube. Hopefully, we can get the word out there to be compassionate to these patients in their last months and feed them by hand.Hank Dunn