Nursing & Medical Proxy: Something To Take Care Of While You Still Can

Three years ago I posted this short essay about my dysfunctional years of working at nursing homes while going to college.

It was a life-changing experience on many levels. I wasn't always a caring person and distinctly remember doing my best to avoid going to visit my incapacitated grandmother when I was a kid. She was on the plump side of obese and had diabetes-induced poor circulation. So when she broke her left tibia one rainy morning when I was 8, it just plain refused to heal and the poor woman just went downhill from there, spending the rest of her life confined in bed or in an ill-fit wheelchair.

She was so heavy that it was hard to transport her around... and the only views she got to see for the last 7 years of her life were the interior of her room, the adjacent dining room, what she could see out of her two windows (we lived in a rather flat and uninteresting city, so nothing spectacular was in view there), the inside of the ambulance and the hospital. To make the matter worse, we kids brought home a few strands of flu every winter and so grandma developed the demoralizing habit of coming down with pneumonia every couple of years. I was just a kid then and found her ill-tempered and scary looking... It was required that I stop by at her room to say hello everyday after school. And so I did just that and, if I could help it, never more.

To this day I am quite apt to admire the occasional young lads and lasses I meet who had, by the same age, developed a lot more empathy for others than I did. There are some wonderful people out there who were born with and never lose their caring and selfless nature. I can testify that some others have to consciously learn the trait... And I also know that there are some who never do at all.

You run into all three kinds of people in all the places in your life, of course. But chances are that you won't appreciate the differences between them until you have found yourself a patient at their mercy in a nursing facility. There are nurses who will treat you like their equals and there are nurses who only see you as something to medicate and clean to earn their paychecks. Even more than that, a lot of people find out just what sort of person their trusted family members are when they find themselves in medically disadvantageous condition. In the able-body world you can complain loudly and expect some result... but what will happen to you when you lack the ability to complain or communicate at all?

I expected to find myself surrounded by old people at the nursing homes. I did, but there were many young and middle age folks there as well. The youngest patient I had to take care of was only 18 years old... and dying of AIDS. There were a few quadriplegics, a couple of locked-in's, and a pretty young woman who coded (went into cardiac arrest) 3 times during the year that I worked on her ward from a really bad case of Guillain-Barre syndrome. These folks convinced me that there indeed are living states that are worse than death.

As a physician my mother took care of grandmother all those years without ever being able to let the poor woman go even though grandma repeatedly asked her to. Out of grandma's earshot, though, she would tell us kids that if she ever becomes helpless like grandma was, that she would treat herself to a syringe-ful of KCl and be rid of the sufferings. Though it took a while before she got around to putting that on paper (thus absolving us of having to make that decision for her if she should find herself incapacitated to the point where she can't handle a syringe). I dare say that that is one of the big reasons why she no longer lives in the USA where a bunch of religious people keep trying to impose their will to live on others regardless of their individual right to self determination.

So, regardless how how old (or young) you are and in what physical health you are in, do yourself a favor and discuss with your loved ones (and attorney) what you would like done for you should you have the ill luck to become permanently medically incapacitated (and there are many different conditions that fit that billing). Better yet, put it in writing as a living will with durable power of attorney for health care designation.

Anyhow, I recently read a not all that recent article in the New York Times about a program that places medical students intending on specializing in geriatric medicine at a nursing facility to play the role of patients for 2 weeks so that they can get a feel of what it is like to see things from that perspective. The page may require you to join the NYT's website (for free) in order to see the article. There is a video clip on it that is really worth seeing. It is easy to sit and pass judgment on others while holding to one's idealistic religious views about life and death when one is healthy and independent. Real life is often unexpectedly messier than one's own projection. As JRR Tolkien brilliantly captured in this snippet of conversation from Lord of the Rings: The Fellowship of the Ring:

"'Faithless is he that says farewell when the road darkens,' said Gimli. 'Maybe,' said Elrond, 'but let him not vow to walk in the dark, who has not seen the nightfall.'"