Saturday, 10 May 2014

End of life care.

I was listening to a old Radiolab podcast (one of the best podcasts out there, subscribe to it now, you'll learn so much) last week , and the topic of discussion was end of life treatment and the disconnect between the wishes of average people vs doctors. Listen to it here.

They started by talking about a study done by Johns Hopkins University where they asked doctors "if you had a brain disease or brain damage that can't be cured, you can't recognize people, you can't speak understandably, and you're in this condition for a long time, indicate your wish for the following medical procedures: CPR, ventilation, dialysis, feeding tube, surgery, etc..." As you can see below, the vast majority of doctors responded that they would only want pain medication as a treatment.

That was then compared to interviews of people where the majority replied yes to CPR and most other forms of treatment.

The hosts of the show found the difference between doctors and non-doctors answers quite disconcerting (as did, I'm sure, everyone else listening). They talked to a doctor who said basically that the reason for the disconnect is a lack of education on the success rates or severity of the intervention. For example, doctors know that CPR works 8% of the time (with only 3% of the survivors returning to a pre-CPR condition) whereas most of us get our information from TV shows like ER and Grey's Anatomy where CPR works 75% of the time.  Damn you Hollywood!

The doctor felt that a lot of the time, often the treatment can be worse than the actual disease and while it may briefly prolong your life, it's not worth the pain it causes.

It's kind of terrifying that people are getting medical treatments that doctors themselves would never dream of doing to themselves or their family. Part of it is a lack of information on what the procedure will do for the person and part of it is families wanting to do whatever it takes to extend the person's life.

A doctor they interviewed said that the topic is hard to discuss with families because it is difficult for families to hear that there is no hope of recovery. It is made harder by the fact that 90% of patients don't have a end of life plan. 90%! That is ridiculous.

The paradox of the entire situation is that when asked, everyone says that they would like to die quickly and without pain but at the same time, most people want every medical intervention done to prolong their life as long as possible. Often the artificial prolongation of life means that death is neither quick nor without pain. The hosts concluded that a good death means "loving life with your whole soul while being prepared to die when there is no more that can be done."

That is easy to say but it doesn't help when a family is being asked if their family member should be placed on a ventilator.  I know people hate thinking about death, but is avoiding the end of life conversation worth it if means that your family won't know what to do if you can't make the decision yourself? Why put the burden on your family if you already know how you want to die? And if you don't know what kind of end of life care you would want, what makes you think your family is going to know? Think about how hard it is to make easy decisions as a family (ie. what will we order in for supper?) and then imagine trying to make those decisions when about someone's life. Wouldn't it be easier to decide when you actually have time to think about the decision and no one is imminently dying?

The whole point of my rant is that there needs to be better education from health professionals about end of life care options because clearly watching ER and House a few times doesn't cut it. Also, talk to your family about how you and they want to die while everyone is still healthy. Put it in writing and it will make decisions much easier when the time arises.


Dave VanSlyke said...

Powerful message, Alley. Good food for thought.

Helen said...

It is commonly thought that Drs want to always keep doing the next thing, I hadn't thought it was the families pushing more and more intervention. Surprising! Thanks for sharing!