Monday 13 May 2013

When Patient Choices Are Harmful

Sometimes, my son makes bad choices.  So does my mother.  Nicholas almost always decides what he wants (and what he doesn't!) based on short term pleasure (and pain avoidance).  This means, he will NEVER choose to have an injectable medication, an enema, or go the ER, even if his life depends on it.  Luckily, Nick's caregivers and his family know his foibles and together, we make sure that if our young man needs treatment, he gets it, no matter what.

With Mom, it's different, but the problem is essentially the same.  She doesn't like the food at her seniors' residence, so she removed her name from the meal plan.  To be honest, a lot of it does not agree with her delicate digestive system, so she has a point.  But in her apartment, she can't be bothered to eat the chicken sandwich my sister has made or even her favorite rhubarb pie that I brought last week.

Sometimes, bad choices that vulnerable people make can have terrible consequences.  My friend is a foster Mom to a LOT of children with disabilities.  One of her foster daughters had a developmental disability as well as a tracheotomy, a breathing tube that needed suctioning on a regular basis.  When the young teenager went into a nursing home for a few days to give my friend a break, the nurses did not suction the tube.  Why?  Because my friend's foster daughter waved them away.  She didn't like the suctioning, so she 'refused it'.  Mucus eventually blocked the tube and my friend's foster daughter died.

The problem of championing individual choice at all costs is particularly dangerous in the case of cognitive impairments.  Another friend's Mom was hospitalised with the physical effects of advanced Alzheimer's.  When my friend arrived at her mother's bedside, she asked a nurse when her Mom had last had a bath.  "Oh, she hasn't had a bath since she arrived here.  She said she didn't want one."  My friend was incredulous - "What do you mean, she didn't want one?!  She doesn't know what she wants, she has Alzheimer's!"  My friend wheeled her mother down the hall and bathed her herself.

Many home health care workers and other health professionals are trained to respect patient choice.  And that, of course, is a very good thing.  But sometimes, that can have harmful, even fatal consequences when common sense isn't part of the equation.  Have you had an experience where the rule of patient choice has been applied without the benefit of observation and common sense?


BLOOM - Parenting Kids With Disabilities said...

Shocking story about your friend's daughter.

I don't think we've had this experience -- will think more on it.

Brenda Parris said...

Your blog hits the nail on the head! I have had many occasions when my son was 'empowered' by well-meaning yet thoughtless staff that didn't think about the consequences and effects of his poor decisions. This is a major problem now that agencies operate under their ideology of client choice and empowerment. Rights without responsibilities are never considered and is certainly never taught in the schools of our kids. We have gone all 'lawyered up' on everything, the pendulum now swings to the other extreme and this is having grave implications for vulnerable people. My son was recently in the hospital and he was not fed, washed or properly taken care of by the medical staff due to this misplaced ideology of 'client directed ' care. It was very scary to think that my son, with his autism and developmental delays , will not get proper medical care unless I am there or hire someone to be with him . This is the extra cost of disability that is hidden from view as it requires families to be extra vigilant and use their time and money to provide care that is not available to them in a normal matter of course.
Brenda Parris, Toronto
PS- Love your work, keep it up!

The Caregivers' Living Room said...

Brenda, I am so glad that you wrote about this. I believe it is a trend (although it is far worse in the UK where the pendulum has swung even further - patient choice trumps all and hang the consequences). For our children and elderly parents who refuse medications, a bath, proper clothing... we need to protect and support. I believe that our personal and collective care for our vulnerable loved ones needs to be carried out and planned for on the basis of 'least restrictive/most supportive'. We don't want the pendulum to swing the other way and have no respect for the person! Let me know what you think of this ethic for care. Thanks, Brenda!

Unknown said...

This is such a huge issue for us. We are conservators for my husband's brother. He would love to have a girlfriend. Unfortunately, his cognitive disability is severe enough that no amount of behavioral therapy keeps him from kicking people she talks to; grabbing and being possessive of her; and generally making her life miserable until the woman (and her family) are afraid and angry. We've been through this six times and with each episode, we struggle with professionals in the field who insist on consumer choice.