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Sunday, February 28, 2016

What's better...to know you are dying or to just drop?

I always get this question from families at one time or another and honestly, I don't know how to answer it.  I believe there are things about both ways that can be appealing.  

Last week, I had a patient that had been battling a terminal disease for almost three years.   He knew that there wasn't a cure and he knew that eventually it was going to be his time.  He would have a round of chemo, get knocked down and then get back up.  He would do the things he loved, hang out with his family and cherish the time.  At least, to hear it from the folks he left behind, that is what he did.

His last hospitalization did not go well and he had finally heard those words, "there is nothing more we can do."  He immediately told his wife to take him home...do not stop at go, do not collect that $200, I want to be in my chair at home now."   Being the amazing woman that she was, and that her family knew her to be, she took him home.  When I met them, it was apparent that he was failing and didn't have time for small talk with me.  He wanted his family close and my job was to make sure they had the tools to care for him at home with love and comfort.  

So that's what I did.  Thursday night, we got him home and in his chair with his family, his pain medication and his cigarettes.  The kids (young adults with families of their own) stayed the night to help care for him and keep him safe and happy.  It was a long night for the whole gang.  

In the morning, everyone who needed to come to tell him good bye and farewell showed up.  The house was full of folks with food and drink and music.  They told stories of the patient and how much he meant to them.  It was good but also bittersweet.

Then, as some folks were filtering out and others in, the grand kids showed up.  They slowly walked in and got on the hospital bed next to Grandpa's chair.  They had faces of confusion as they watched their "papa" dose off.  I looked over to see my patients son sitting at his father's feet, talking to the kids in a quiet voice, explaining that papa was sick and has been for a long time and now it was time for him to go.  They all looked at their grandfather waiting to see what he would do and he woke up, looked at them, and broke into a big smile.  It was one of the sweetest times I have ever seen of a family and the love they shared.  The little ones beamed as they watched "Papa" smile at them and the older ones just took a breath in and relaxed.  Then, one by one, they gave him a little kiss on the cheek and the designated family member to care for the children took them home.

My patient's son was in tears as was the room.  That was an intimate piece of time that was just exactly what was supposed to happen for "Papa" and for the kids.  The chills ran down my spine and I knew I had just witnessed something profound.  When I began to explain the signs that signify that death is coming, I asked the kids to make sure they had told their dad everything they wanted him to hear.  One by one, they told me of the special times they had with him after the diagnosis and the connection and peace they had with him leaving them.  They told  him daily how much they loved and appreciated him.  They said that they knew time was limited and didn't let anything be taken for granted when it came to letting Dad know they loved him.  The kids were at peace.  He passed quietly and comfortably in the night with his kids and wife around him as he left.

They called me in the morning and when I got there, the house was peaceful and organized...they had finished strong and just how "Papa" would have wanted it.  They were sad and relieved and holding each other close as they went through the day.  They were an amazing family.

So was that good?  Would you rather that then just being here one day and gone the next.  Still hard to say really....

But, when you think about it...limited time gives you is perspective.   I think it makes you take stock of what you have and what you don't...of how you want to be remembered, and of how much you want others to know how much you love them.  You can also take comfort in knowing how much they love you.  

For instance, a few weeks ago, a patient's friend went skiing and had a heart attack on the ski slopes.  He was an older gentleman and was with his family.  I asked my friend about this question and she responded that she was sure that they had all their "accounts in order".  Interesting way to put it but I understood what she meant.  They were all together, celebrating Valentines day with the whole family and spending time together.  Hopefully, they knew how much they  loved each other and there wasn't much left unsaid... 

The reality is that day to day life isn't so easy...to let by gone's by by gone's or to let things go that really bother you go.  But, I think, it has to be a priority to tell the folks you love everyday that it is true.  Even more important, is to tell the folks you still love them after a fight or a misunderstanding because that kind of thing can haunt you the rest of your life.  I know...I have made some mistakes in that area and am convicted as I watch families love each other so completely at the end...

I believe the question isn't, is it better to know you are dying -  but do all the people in your life that you cherish know how much they mean to you?  That is the question to think about and make a change if they don't.  As you and I  know, life is both long and short...long when you are suffering and short when you know the end is near.  

I would argue that for some of us, knowing the end is near will change us...to make amends and love hard and savor the love, the kisses and the closeness of those we love.  The thing is, we never know...really...when the end is near, so why not try to do that more?  To savor that kiss from our love, that time with our kids, our friends and our people... knowing it will be a memory some day and hopefully, a memory that we cherish and take comfort in.  

Because, really, that is all we can do in this crazy world...love each other better, right?

We'll tawk tomorrow,
I love you all,
Terry

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