What do you want us to do when your heart stops beating?

I am a strong proponent of basic estate planning, including discussions and documents (powers of attorney / living wills) re: end-of-life decisions. It seems to me that being an adult means that you invest a little bit of time and money to keep track of (and distribute) your assets and liabilities, ensure clear guardianship for your minor children, and empower the people you want to handle medical and financial decisions for you in case of your incapacitation/death. And I’m not saying that just because I am an estate planning attorney. I sincerely think these things are important and worth the investment of time and money to have handled correctly.

But today, in our family’s meeting with my mother’s new doctor, I learned something new and I thought I’d pass the information along to you just in case you were unaware as well …

Did you know that less than 1% of people in my mother’s medical situation (end stage heart disease, severe lung disease, diabetes, Lupus, etc.) survive a “full code” (the heart-shocking, CPR-administering, intubation “life saving” procedures we see on hospital television shows all of the time)? I didn’t. I knew from some old E.R.’s / Grey’s Anatomies that the number was low, but I didn’t know it was that low.

Tonight, in a very sad, very sober conversation with my mother’s gentle, but extremely direct doctor, she was asked (and my stepfather was asked) what they want the doctor to do when her heart stops beating. Because, sadly, her situation is “very bad” (to use the doctor’s words) and there isn’t really anything that can be done to change her prognosis, which is death.

He recommends that she be entered immediately into hospice care and that she and Charlie talk and figure out whether she wants to have a “full code” run if her heart stops beating and/or she stops breathing (which, he explained, will probably break many bones in her chest and will be painful and hard and even then have a 99% chance of immediate failure, or if she survives a little while, may have a severe neurological impact and will, ultimately, not change her prognosis at all anyway).

Oh, friends. It was so awful. I just know that I will never forget the details of that darkened room, exactly where my mom was in her bed, my stepfather standing near her, my sister in her chair, the doctor, the nurse. It was a conversation that will stay with me for the rest of my life. Yes. We all knew she was very, very sick. We all knew with some level of vagueness that she could die relatively soon. But the clarity and finality of having the doctor lay it all out for us with such a stark question (“Do you want to die in a hospital? Or do you want to die here?”) was heart-breaking. He was a wonderful doctor. He was gentle and compassionate. But the question needed to be asked and at some point very soon, they will need to let him know their decision.

After the doctor left the room, Charlie and Kali also stepped out and I had a few minutes alone with my mother. I climbed into her bed and held her and cried and told her how sorry I was and how I loved her with all my heart and how she was such a good friend to me and how grateful I was to have her for my mother. And I asked her if I could pray for her and she said yes. So I did pray. And then Kali and I left her and Charlie alone—I think Charlie is going to sleep in her hospital bed tonight with her.

It’s all so very sad. I’m grateful for the time I’ve had with my mom. I’m grateful for our reconciled relationship and true friendship. I’m grateful that my daughters have gotten to know her and be loved by her. I’m extremely grateful that Kali and I could be here, present with my mother and Charlie, during this devastatingly hard conversation.

But all the things I’m grateful for don’t overcome the fact that I’m just very very sad that my mother is dying. Please do continue to pray for her.

(Oh, and just to wrap up my estate planning train of thought in this blog post too … I thought this article was particularly helpful re: thinking through this whole “full code” issue. It might be worth doing a little research on your own / talking with your doctor, etc. and then expressing your convictions to  your family members/powers of attorney. I probably sound very strange in talking about that when such a painful personal thing is happening in my life. I think I just started reading more about this topic because my brain wanted something to do as I sit here alone in my hotel room in Michigan. Why not estate planning as a distraction? Yes. I am an odd duck, I know. Some people knit. I research and blog.)

Thanks again for your kindness—

Gnite,
Tara B.

PS
This is a re-post from 2012. My mother died fifteen days after I wrote those words and I still miss her every single day.

PPS
My mother had a lot of challenges in life and we had some very dark, very painful years when I was a child. (This is one reason why my, “How to Write a Eulogy for a Bad Mother / a Mother Who Didn’t Love You” continues to be my most-read blog post of all time. By tens of thousands.) But she also had a generous heart, a brilliant mind (when she was sober and in her right mind), and a love for words that has flowed down even to her grandchildren. I shared some of her poetry once and you can click here to read it. But I will close with one of my favorites …

If you come to me
And need a friend
And I am harsh
And curt
Please say you need
   to talk
Before you walk away alone
Sometimes even people
Who care an awful lot
Have other things on their mind

(a poem by Kathryn Kroncke Klena Ford,
my beloved mother and friend)