Monday, January 08, 2007

The Sandwich Generation

We are the sandwich generation, those of us still young enough to be caring for children and grandchildren, but whose aging parents also need our help. This has always been true to a degree, but thanks mainly to medicine and science it has become one of the central challenges of our time.

I have been haunted by a book review I heard a couple of weeks ago of The Demon Under the Microscope. I haven't read the book but the thrust of this non-fiction book is impossible to ignore.

The world's first antibiotics were developed in the 1930s in Nazi Germany. The man most responsible was Bayer scientist Gerhard Domagk. He was not a Nazi, and was later prevented from accepting the Nobel Prize. Thomas Hager, author of The Demon Under the Microscope, tells Scott Simon the story.

According to the author, it was the discovery of sulfa drugs that kick-started the antibiotics revolution that gave us an arsenal of medicine we now take for granted. Every schoolboy knows about the discovery of germs by Louis Pasteur and the development of pasteuriztion. But that was in the 1870's and for the next half a century medical people knew about bacteria but were helpless to do anything about them other than killing them through pasteurization or keeping the environment of the surgery as clean as possible. Once an infection set in, however, there was little that could be done to stop it until sulfa drugs came on the scene in the 1930's.

It is an exciting story in itself, how within twenty years childhood mortality from bacterial infections declined by a breathtaking ninety percent. The demographic impact was so great that between 1932 and the fifties, life expectancy in the US increased by ten years!

Fast forward to now.

I was discussing this book review with a resident where I work and she recalled having started nurses training in 1939 and being able to see the results of the antibiotic revolution first hand. My mother's family also had a close call that left her brother stricken with polio. They always felt he contracted the disease through contaminated milk because in the twenties not all dairies were conscientious about pasteurizing their products. She escaped because she didn't like dairy milk and only drank fresh milk from the place where they lived which may have been cleaner even though it was unpasteurized.

Whatever the reasons, we are now living at a time when families are more generations deep than in years past. It is no longer unusual for four, even five generations to be alive at the same time. Last week I saw a snapshot of a new baby, a fourteenth great-grandchild according to the proud great-grandma, who said he was the first male child in that many generations and births to carry the family name. The rest were either girls who would change their family name when they married, or children or grandchildren of those whose names had already changed from the original family name.

The point is not about names. It is about how many of us are now OLD. And getting OLDER...

This post was inspired by a very thought-provoking little piece at 3 Quarks Daily by Shiban Ganju. It is simply a listing of stats that needs to be read and thought about by everybody.
This is not abstract argument here. "Everybody" includes you and me because no one is going to escape either dying or having to come to terms with the death of others.

An isolated cost versus benefit matrix should not determine the end of life measures. The insatiable appetite for technology makes the choice between cost and ethics even more difficult for the family and the health care providers. In the absence of an advance directive, often, all the options in the care of the terminally sick seem ethically right. Sometimes, the quality of remaining life helps in deciding the course.

About 10% of all who die after age 65 are severely impaired and 14% are fully functional. Between these two ends of the spectrum are partially functional people. Disability increases with age. In a survey done in 1986, only 20% between the ages of 65 and 74 were completely functional and 3% were severely disabled. At age 85 about 22% were incapacitated and only 6% were functioning fully.

I joked once about the idea that most Americans think that dying is optional, but joking aside that is not far from the truth. Even for a very old person, getting sick or having a physical trauma is no longer a death sentence. If a fall, stroke or other medical problem takes someone down and he (or family member on his behalf) wants to live, the doctors can pretty much patch him together, write a few more prescriptions, and send him on his crippled way.

If there is any point to this post, it is to urge all readers to begin preparing individual advance directives. This is not, as many believe, a quick little formality that one can knock off at the last minute on the way into the hospital. It is a rather lengthy and very individualized legal document (in most cases two separate documents) several pages long, which clarify what the person signing it wants to have done or not done in the event of a variety of possible scenarios.

Following a massive stroke last year one of my uncles was hospitalized for the first time in his life in his nineties and was left comatose but in otherwise excellent shape. The family wisely decided against a feeding tube and he was allowed to rest comfortably until he died. No one who knew him would suggest that he would have had it any other way, but matters are not always as clear.

I thought my own advance directives were all done until last week when I heard yet another thought-provoking program on The Infinite Mind dedicated to the issue of aphasia.

Aphasia is the terrifying loss of language: destruction of speech, reading, writing or comprehension. It occurs when there is damage to the brain from a stroke, head trauma, certain neurological diseases, that has affected the language areas of their brain.

My personal decisions about advance directives have hinged on the issue of cognition. In other words, if I am no longer cognizant of my condition, other variables being taken into consideration, then it is time to "pull the plugs" and let me go. Now, having learned that due to aphasia I may have cognition without the means to communicate that...I have to go back to the subject and give it more thought.

This is not easy stuff, but it is important. It is as important as having a drivers license, the deed to your property or a plain old last will and testament. If you think you will not have to worry about it, you may be right. But in that case, you may be leaving a serious and preventable burden to someone you love.

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