“Please do everything you can to help my mother.” As a physician specializing in dementia care, I hear this tearful, impassioned plea often. Despite medical advances, dementia remains a terminal illness for millions of Americans suffering the mental and physical consequences of this devastating set of diseases. The majority of persons in the final stages of dementia develop eating problems, resulting in weight loss and recurrent respiratory infections. Families are often faced with the difficult question, “Do you want us to put a feeding tube in your mother?” At first blush, the answer is often yes—“Of course I want you to do everything you can. Why wouldn’t we put a tube in?”
Unfortunately, the counterintuitive evidence from numerous medical studies is that feeding tubes do not improve survival, result in weight gain, or improve quality of life. Despite this evidence, my colleagues and I published findings a few weeks back in the Journal of the American Medical Association that noted large variations in the rate that certain hospitals insert these tubes in patients with advanced dementia, even after taking patient characteristics and patient choice into account.
Imagine going to two hospitals in Los Angeles, California—each a few minutes drive from one another (Well okay—nothing in LA is a few minutes drive but you get the point). If you’re admitted to Hospital A---the chance that you will receive a feeding tube if you are a nursing home resident with terminal dementia is nearly 20%. At Hospital B, the chance that you receive a feeding tube under the same set of conditions is 0%.
I’ve left out the names of Hospital A and B because it really is irrelevant. Both are top-notch facilities with well intentioned docs. And to be frank, Hospital A and B exist in pretty much every city in the United States. The point here is that it is all about the variability---And you wonder why we pay so much for health care. Think about the costs involved in procuring OR time, doctor time, and supplies needed to put a tube into someone’s abdomen.
So you might ask why one hospital is doing this procedure that so many researchers have found unnecessary? I can assure you it isn’t about patient choice. The simple answer is money. The fact is our health care system continues to reimburse doctors and health care facilities to perform such procedures while not reimbursing them for taking the time to talk to their patients about making difficult medical decisions. Some hospitals, like Hospital B, go out of their way to try to do the right thing—often using their own money and resources to educate physicians and health care workers. Others just go with the flow—and make more money by doing so.
To conclude, reasonable persons might differ about whether or not they would want a feeding tube at the end of life, but the mounting evidence suggests that patient (or caregiver) choice is not the driving decision. As we debate health care reform, we desperately need a system that supports patient and caregiver choice rather than the whims of hospital executives.
For a published list of the rate of feeding tube insertions among dementia patients for hospitals in your region, please see Brown University’s websitewww.longtermfocus.org.
A big thank you to Dr. Joan Teno MD for her contributions to this blog.
Monday, March 8, 2010
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