Tuesday, November 17, 2009
Age Matters: Dementia is a terminal illness
Dr. Michael Camardi
Recent columns
About Dr. Michael Camardi
Dr. Michael Camardi is a geriatrician at Carilion's Center for Healthy Aging. Age Matters is his new Roanoke Times column, appearing the third Tuesday of every month.
Camardi has been with Carilion for about three years and was one of the experts who reporter Beth Macy spoke to for her series, “Age of Uncertainty.” He wanted to start this column to help answer questions he’s often heard as part of his job.
Camardi was founder and past medical director of the geriatric liaison program for Jacobi Medical Center (Albert Einstein College of Medicine) in Bronx, N .Y.
Camardi trained at Winthrop University Hospital (Stony Brook University Medical School), where he was chief medical resident. He has received numerous commendations for his contributions to education, patient advocacy, community relations and hospital administration.
If you have questions for Camardi, please mail them to him at Center for Healthy Aging, 2118 Rosalind Ave., Roanoke, VA 24014, or e-mail them to extra@roanoke.com with “Age Matters” in the subject line.
Dear Dr. Camardi,
We just took our dad to a doctor who does what you do and he said that Dad's got pretty bad dementia and that he's going to die in six months and we should just make him comfortable. And you know what that means, right? They're just going to let him go and not do anything. How does he know Dad's going to die in six months? How can he say such a thing?
Dad's got a lot wrong with him and all he does all day is sit there, doesn't know us from a hole in the wall anymore and says the same things over and over, and we have to feed him, if he'll eat. But he's not in pain or anything like that. He looks kind of thin but he doesn't look like he's dying.
I've seen people die before and it's nothing like this, so where does this doctor get off telling us something like that just because he's got a little dementia?
-- Galax
I do think I understand what you are saying, so allow me to try to put this seeming contradiction in another way: You sense that you are seeing "life" because you do not feel that Dad is exceedingly needy in his current state of being and because he is not crying out in pain or the like.
However, your doctor is saying that this form of "life" cannot go on the way it is without doing a lot more than what you're doing right now and it would not be appropriate for Dad's quality of life to do more than to make him comfortable.
What that means is that you should consider not putting him through a battery of uncomfortable and sometimes risky tests, repetitive hospitalizations that carry their own risks and treatments of questionable value.
Now, if you think this is what Dad would want in spite of his current state, that is your right to demand that the system, as it currently stands, expend the necessary resources to that end. Realize that you are in control of how events will unfold.
Fundamental to all of this is having a relationship with a doctor who knows your family and your dad very well so that a trust exists so that when these conversations happen, they are done in good faith.
I know that it is difficult to understand, but dementia is a form of dying. Sadly, from what you write, Dad sounds as if he has advanced dementia. It seems that your doctor listened to what you said about Dad and takes that as a sign of progressed dementia. As a result, he offered you his prognosis.
While it may not look like a form of death you might have seen before, a recent study in the New England Journal of Medicine presented in clear terms the natural history of dementia progressing -- especially when the dementia patient stops consistently eating -- as a terminal illness much like cancer.
As such, patients with dementia deserve hospice care. What the study clarified was what we in the field always felt: that for many reasons, dementia patients do not get the benefit of hospice care early enough.
The day is long past upon us where we as a society should not think of dementia as a terminal disease. This means that dementia should be thought of as a cause of death just as advanced cancer or any disease state where there is no reasonable hope of a good outcome.
It is hard to get used to the idea that we should not do every little bit we can to preserve life because we want our loved ones to be with us for as long as they can be with us. Maybe we are afraid to let go and can't stand the thought of living our lives without the one we loved living there with us. But when faced with a case of advanced dementia as you present then looking at Dad's condition should be done in the light of a consultation with a hospice service.
As for "not doing anything," let me say that one of my goals as a physician is to ease as much suffering as I can for my patients and especially the terminally ill.
Hospice care is far, far from doing "nothing"; in many ways it is mysteriously healing in a special way for both patient and family.
At this point, I think the family must all come together and work out what is best for Dad.
By the tone of your letter, you must love him very much. As he was rearing you, he must have made some tough choices for your own good. All parents do. I think that in our adulthood, we come to appreciate what was done for us then.
Now may be the time to make some tough choices for Dad's own good. Now, he is your dad and I hope you will make the same tough choices for him in the same loving spirit he made for you.
Do in love what would have made him proud of you.
Dr. Michael Camardi is a geriatrician at the Carilion Center for Healthy Aging. His columns run on the third Tuesday of each month in Extra.
If you have questions for Dr. Camardi, please mail them to him at Center for Healthy Aging, 2118 Rosalind Ave., Roanoke, VA 24014 or e-mail them to extra@roanoke.com with "Age Matters" in the subject line.
