Wednesday, October 14, 2009

Redefining Dementia as a Terminal Illness????

Wow! Wow! and Wow!. We are redefining dementia as a terminal illness. Hello, this is not a new idea or concept. It has been known just about forever, by anyone who treats AD or any family who has lived with a loved one through all the stages and the end of the disease.
It does illustrate a pathetic point about our society, With a disease that affects some five million people, this is not a well known fact. We don't like to think or talk too much about dementia if it does not affect us directly. If it affects us directly, others that are not affected don't like to talk about it to us. So therefore we can't really learn about it from each other. Thank God some people still read TIME Magazine.
Now what's even more sad and pathetic is that many physicians who perhaps don't treat this population and this disease don't know this. Hence arguably the most prestigious medical journal out there, the New England Journal of Medicine publishes this study. It is big news ...I guess. At least the media will jump on it.
Now another key point is this. Thinking along these lines, there are some 47,000 people who die from AD, each year. I STRONGLY, STRONGLY feel that this number is grossly underestimated.
Why? Big secret?? A lot of docs don't like to list Alzheimer's as cause of death on the death certificate. WHY?.... My God its not like it is taught in medical school that dementia is not a fatal illness. I'm pretty sure most students in medical school over the last 20 years have been taught somewhere that AD IS fatal.
Now in thinking about this TIMELY article even more.... there is no question and no argument that we need more palliative care. WE can't cure it. It is terminal. Is this a new concept? NO.

Do families want to hang on and be aggressive in treatment? YES. SOME do. Not all. Are families that hang on and want everything aggressive done bad people and bad families?
Of course not, but they do deserve to have an empathic conversation with their doctor about the last stages of the disease. They should not be considered bad because there grief leaves them in a not so politically correct realm. Is palliative care okay? Is it okay not to be aggressive in treatment? Of course it is. ... and its politically correct, what a perk!
Have these discussion been taking place, by GOOD doctors and chronically grief stricken families for years? YES...... long before all the political popularity and cultural buzz and media hub-bub and POTENTIAL economic gravy train for end of life counseling?
Is it politically timely? YES. Do politically palatable publications mean grant money?? Absolutely. But anything that studies and raises awareness of AD , We will take.
Finally, Finally something in the health care debate and crisis that has in a very convoluted way had a direct effect on increasing awareness of AD.
By the way that "end of life counseling" is not President Obama's idea, contrary apparently to popular belief. To actually get payed for it, is maybe new and this idea makes articles like this Time Magazine one below stand up and get noticed.

One other final thought. And this is in My Book. I Am finishing my book. My mother died 22 years ago from Alzheimer's. It is awful and you go on....... the reason that I never finished my book in recent years by the way, is that I never had an ending.

The effect and toll Alzheimer's takes on family members, never really ends.

The end of my book will be done. When I see articles like this in Time and this NEJM study, I realize my mother's story, my becoming a physician while she was dying from AD was just a begining. It is just one true story. There are millions and millions out there, and since my mother lived through it and died from it, not much had changed in 20 years, with what we really know about it. We have come so far but yet are still barely scratching the surface.

So here's that final thought for this whole post, its in my book..... it gives perspective......
You know what...... read the TIME ARTICLE below this post first, then I'm going to give you a perspective, an image, a visual that to the best of my knowledge one else has yet given in regard to this disease......I promise.


karen said...

I'm speeceless again. I struggled paying for all my mom's needs , caring for her and making all the doc. appointments. giving her all her meds. for years. Than I found out she could be on hospice. Could of been for years. But the doc. did not tell me. I thought it was just for end of life. I was so mad the doc. did not tell me mom could have hospice coming. They pay for everything except the meds. that will slow AD down and the meds. that might prolong her life. But I have chosen to stay with hospice. They pay for diapers, under pads. and all her meds. to make her nice, feel good. and not hurt. Am I doing wrong? Just so we have money at the end of the month.

Joseph Potocny said...

Dr. Joe,

This Joe Potocny, Thank You for vindicating me and others with this disease who have been yelling in a vaccum. No one hears us. I have felt alone in this crusade if you will. Sorry for losing your mom. Send me a picture of her, with birth year and year of passing and it will be posted on my blog in memorium.

Wellescent Health said...

When it comes to aging, many conditions are not given the attention they deserve as they are too quickly discarded as "part of the aging process" and given little additional thought.

Hopefully Time's article will be the first of many from various sources that aim to educate the population about the condition and to stimulate greater research funding.

Helen Ginger said...

Both my father and my oldest sister had Alzheimer's when they died. I'd been told that you don't die from Alzheimer's, but from complications due to A. I've always said my father, with Alzheimer's, died from complications after hip surgery, but my sister died from Alzheimer's. No doubt. She lived long enough to feel the full ravages of the disease.

Straight From Hel

Talking about the book with the Lake Superior wind....... a calm day