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Thursday, February 4, 2016

End of life...

Today, in Colorado, the house of representatives is debating an assisted suicide bill.  The talking heads on the radio have been going back and forth about the pros and cons and who has the right to make the decision....etc., etc.

I find this so interesting, of course, because I am in the thick of end of life and what is perceived as suffering and what is suffering.  In nursing school, some 31 years ago, we were taught that pain is whatever the patient says it is.  I believe that suffering is the same way.  Suffering is whatever threshold the person says it is...

I have had the honor of caring for folks in all different settings that are at end of life.  Some people begin suffering when the diagnosis is presented to them because the thought of leaving the earth or having a diagnosis without a cure makes them suffer.  Are they in physical pain?  Sometimes they are not but the mental anguish of what is to come is enough to feel like they are suffering.

The question begs...is it my place in the medical profession to make sure they are really suffering and they really want to die so then they can get the medication they need to end their life?  I guess I don't want that kind of power.  I know that many folks that I begin end of life care with are done...tired and ready to move into another realm.  But, do they want to do it themselves?  Do they want to pick the date and time?  I don't run across many of those folks.  

I do feel that when families are getting the fatigue that comes with caring for a patient that is dying, they would like the choice but I also think that many of them would not take that option should it be offered.

My hospice patients are courageous and well informed.  They are ready to end the treatment and deal with whatever comes their way.  A lot of them want closure...to finish strong and make sure that the ones they love know that they are proud and are going to be fine without them.  They spend time working through life stories and laugh and cry at the next steps.  With many families, the end of life just makes the glue that holds them together unbreakable.  They got through the death of a loved one and the cement of the experience is a painful yet empowering experience.  

Still, I have some folks that ask the questions...the ones that begin with, "they don't make animals suffer like this, why do they make humans?"  I don't have an answer but that question opens a dialogue that helps me understand what the person really wants at end of life and gives me clues to help them get there.  Interestingly, if I could say, "well, we can get you a lethal dose of "X" if you want", I am not so sure so many of my patients would take me up on it.  But, I can totally understand wanting it if that is what they want.

So, my personal thoughts are in a jumble about this.  I think about myself and if I was suffering and would I want that option?  I always say I would...but would I take it?  I cannot say for sure.

I do know that there is some profound healing and learning about the deep love of families that happens around caring for a dying person.  But, sometimes, it is the most difficult and hurtful times for families that were fractured before the person became ill and that time is filled with fights and yelling and deep anger.  Thankfully, I don't see that too much but I would be lying if I didn't say it happens.  So in those situations, if the dying person could take a lethal dose of something...would that make the fracture of the family and deep anger go away?  I don't know...

Illness, terminal diagnosis and end of life times are the most difficult things a human can go through.  To know that the end is near when you would rather stay is daunting.  Some people can look at all of it as a part of life and live day to day while others cannot get to that peaceful place.  I can understand both and hope that if and when the bill gets passed, it is clear and gives the power to the patient...so that the wishes can be honored and understood clearly...and it is not up to anyone else.

Food for thought...
We'll tawk tomorrow,
I love you all,
Terry




3 comments:

Ms. Moon said...

I am a strong believer in choice in this matter. I have read accounts of people who have chosen to take matters into their own hands, for many reasons and most of them, in my opinion, valid.
But I don't know.
Not having a deep religious belief keeps me more open to this question. I don't think there is going to be eventual punishment if one chooses ones own time and place.
Is it possible that if a person with a terminal illness makes the decision to end things and includes the family in their decision that this, too, could be a way to come together?
I think of when my sister-in-law was on life support and could not make that decision but the family knew with certainty that she would not have wanted to be kept alive through so many artificial means and instructed the doctors to let her go. It was a very hard thing and yet, everyone knew it was the right thing. There was no second-guessing.
Ah, girl. You deal with the real things. And as such, you are allowed and should have a voice.
I love you, Terry. I always will.

jeannine nye said...

well, you do know how to throw an interesting subject for us to think about, into the ether and so we shall all try to answer. I have always felt that it was best left to nature, but then nature would not use hospitals and doctors and nurses to aid the dying, but sit with them alone until the last breath... I was watching a touching programme about a man given the news that he had motor neurone disease, and that he made up his mind to have an assisted death.. of course his relatives and wife didn't want him to chose this way, but in the end it was right as he had deteriorated in such fast time, he barely could get to travel to the place, his time ran out so fast.. this I could understand, but having said that, whether I would be brave enough to choose it, I could not say.. I admire your strength and kindness you give to your patients, and I know you are a very nice loving person.. I enjoy reading your blog as it comes across as being written by a clever and caring person, who does the best she can for everyone she meets... thinking of you, and loving the fact that you made me think deeply even if it was just a moment... we should all stop and consider.. what if...

Barbara Joy said...

Well, Terr... you don't have to be dying to feel the pain of loss... to feel the pain of end of life (as one knows it). It happens every day. The pain of lack of understanding in this world.. It's not associated with terminal conditions. It is associated with terminal ignorance, of one kids toward their mom. It's correctable, but a whole lot of pelicans have to gather to pull it together. And I guess that's a rare thing to have this come together. And apologize.

And it's okay...