Choosing Oscar--Why Choice matters at the End of Life

“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.

Doctor...Do I have Dementia?

As a geriatrician I am often asked by concerned patients whether or not they have dementia.

"Doctor, I can't seem to remember names as well as I used to"

"I find myself going to the refrigerator and not knowing what I wanted"

"I misplace my keys all the time."

In many cases----these concerns just require a little gentle reassurance. The fact is that memory varies day by day. Some days our neurons just seem to fire a little faster. As an example, think back to when you were in school. If you were sleep deprived, you didn't function as well the next day. If you imbibed a little too much on alcohol, the next day was a blur.

The fact is that there are many things that interfere with memory including depression, sleep, medications, and other health care issues. Just because you are a little forgetful doesn't necessarily mean you have Alzheimer's---you may just as likely have sleep apnea or depressive symptoms.

So when should you be concerned that you have dementia. An instructor once told me that Dementia is not about misplacing your keys; it is about misplacing your keys and finding them in the refrigerator.

Personally, I am always much more concerned by memory complaints raised by family members or friends. When they are self-initiated, they often are a result of other things going on. Regardless, all memory concerns should be addressed with your doctor. That's it for tonight.

Tomorrow---I'll talk a little about how we diagnose dementia.

Welcome

Welcome to the new blog. I hope that readers of my book Making Rounds with Oscar-The Extraordinary Gift of an Ordinary Cat will find this blog a place to share ideas and questions about being an Alzheimer's caregiver.

As a practicing geriatrician, I'm happy to offer my insights and provide some general guidance to your questions. Obviously, my advice should never substitute for the advice of your own doctor--With this disclaimer aside, I hope I can steer readers in the right direction. As I've found though, the best advice often comes from the family members (rather than the doctors) going through the caregiver experience right now...so please feel free to jump in if you see a question and you'd like to answer.