Wednesday, 5 October 2016

Care Partner Wednesday--The Domain of Autonomy



It was a desperate time. My husband was in the cardiac intensive care unit of a Toronto hospital, fighting for his life. His heart was large and floppy and not doing what hearts should do. He was on the list for a heart transplant, and various methods were being used to get him through each day until a heart was available.

I was working full time, spending a few hours with him at the hospital at night before taking the hour+ journey home. Life felt out of control. This was especially true for Bill, who couldn't even sit up in bed. There was no autonomy--no choice. Even his food was carefully chosen for him and measured, and he was only allowed a certain amount of fluid in a day.

In the midst of this madness, we invented a game. He was wearing an oxygen mask, and I would get a cup with ice chips and toss them one by one in the holes in the mask.  He would try to catch them. Between the ones that melted (they were chips, after all) and the ones that missed (I'm not a great shot) he only got a few, but we were amusing ourselves, and it seemed to be a way to lighten a horrible situation. We made the choice to turn pain into a game.

Until the nurse yelled at me.

She saw me leaving for more ice chips, and lit into me. Those counted in his total fluid intake, didn't I know? How many had I given him?  Didn't I realize this was all scientifically measured and I was putting him at risk?

I came back to the room and smiled at him, changing the topic of conversation. I left shortly after, and cried all the way home. Besides being humiliated, my one tiny choice and our silly little game were crushed and destroyed. I felt destroyed, too.

It's part of who we are to desire autonomy. Choice. Freedom. Our country was built on those principles, and we, its citizens, hold them dear.

"Simply put, to be autonomous is to be one’s own person … to be respected for one’s ability to decide for oneself, control one’s life and absorb the costs and benefits of one’s own choices." 1

Autonomy is what makes us people, separate from those around us.

If you think about what we have talked about, identity (knowing me) and connectedness (connecting with me) together defeat the plague of loneliness. Autonomy in one of the seven domains that defeats the plague of boredom. When everything is done for me and I have no choice, life is boring.

Autonomy is especially important in community living, such as long term care or retirement. When people live together, rules are necessary. It usually isn’t the case that those who live under the rules, make the rules. Rules govern every aspect of long term care—when to get up, when to eat, what food to have--the list goes on. When someone enters long term care, they can feel like all their autonomy is lost.

So what do we do?

Respect looks for ways to restore autonomy. Creativity looks for ways to do things differently. What would happen if people got up when they were ready, chose their own clothes, went to the activities they enjoyed, or sat at the window and watched the birds?

One of my residents confessed to me that she used to love sardine sandwiches. That was a delicacy that was never going to hit the menu, but I had her tell me exactly how she liked them. Whole grain bread, a touch of mayo, and lettuce.  I brought in a can of sardines and the dietary department made it up for her. I think we were as excited as she was when we presented it to her. Not only was her choice respected, but she felt special and validated.

 The bottom line is respect. If I'm coming from a place of respect, I will look for ways to give you as much choice as possible. I will ask your opinion. I will value it when you give it.



1. http://edenalt.org/wordpress/wp-content/uploads/2009/06/EdenWell-BeingWhitePaperv5.pdf

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