Friday, November 22, 2019

Death Decisions on my Mind

That title sounds kind of macabre, but there it is. This morning I listed to this podcast from "Hidden Brain," called "The Ventilator: Life, Death And The Choices We Make At The End." It made me cry. But it wasn't a bad cry. As I was crying, I thought, "I guess this podcast was a 'trigger' for me."

If you listen to it, you'll probably know why it made me cry. It's about a family with a wife/mom who had ALS, Stephanie Rinka. It made me think of my brother Dan, of course, as the mention of ALS always does. This woman had the kind of ALS that starts with your speaking and breathing muscles. It made me thankful again that Dan's had started in his legs and moved up from there.

I thought Shankar Vedantam, the host of the podcast, had a good point that this family's story shows how difficult decisions about how you want to die are. Stephanie and her family spoke about that subject throughout their lives and Stephanie, a nurse who had seen and experienced many different kinds of death, always made the point that she did not want to live without quality of life. When she saw someone living inside a body that didn't function, she told her husband if she ever got to that point, to "just shoot her." But when it came to actually making the decision on the spot, in a kind of crisis, it was not so easy. Listen to the podcast; it's good.

As I think about this family's story, it seems to me that, although they spoke often of not wanting to lose their quality of life, they did not -- from what the story says -- actually talk about or plan for Stephanie's death. When Dan was diagnosed, he and his wife Kathy went to a lawyer and made plans to ensure financial stability for Kathy when he was gone. They faced the fact that Dan was going to die and made all the preparations they could. I think that made a big difference.

It's not easy, though, that's for sure. Coincidentally, this evening in the "Anerica" magazine which I receive in my email, there was another story about a family dealing with ALS, "I was diagnosed with A.L.S. With God’s help, I lived to send my son to Notre Dame." The husband/father has ALS, again the kind that starts with the speaking and breathing muscles, faces the same decisions about getting a feeding tube and a ventilator, and is thankful for having decided to extend his life with both,

One woman says she never wants to live with a non-functioning body, but then decides to do just that, getting a feeding tube first, then a ventilator. Looking back, her family feels the ventilator decision was a wrong one, that caused them all more suffering. A man decides to extend his life so, if possible, he can see his son graduate. He gets a feeding tube and then a ventilator and is still living and has been able to see his son graduate. There are differences, of course, but it still serves to show that the same decisions can turn out wildly different.

Dan decided not to get a ventilator. I know he and Kathy made that decision together and all of us feel it was the right decision. Dan's death was peaceful, as peaceful as it could be anyway. All of my family got to see him one more time before he died. I took several trips to help with his care, and our parents, his wife, kids, grandkids, sister, and many family members and friends visited with and cared for Dan. It was a sad, sad time and we still miss him greatly, yet I am grateful to God for that beautiful time as he was preparing to die. I am grateful that the death of my parents also gave us time to say good bye.

What are your thoughts?


  1. When one has the luxury of deciding how to die, and the resources to do it that way, the decision must first be personal, and then hopefully can be extended to the family for affirmation. We have Medically Assisted dying here in Ontario, and as a pastor I've been involved several times. It's a blessing for those who choose it. But every death is its own thing, there are many paths, and we need to give people room to choose the one that suits them.

    1. Thank you, John. You're right that we do not always get the luxury of deciding the things that will or won't happen as we die. And, as these articles point out, even when we do decide ahead of time, as you say, death is its own thing. My prayer is we know God is present, and we gain strength from that.

  2. AS a nurse, I walked through the process with the family of the dying as they searched for what was best for them all. Grieving as they went. Sometimes the decisions were a relief to finally be able to make them and their loved one could be without pain. Then, our family had to make series of decisions, in the land of confusion, pain, fear, and wanting to find what was best for our child. Those were the hardest choices. A life of just months, yet almost always in pain or at minimum, discomfort. We found a different way of looking at each day: what was in our child's best interest, was hope available, realistic or not. Decision making that sometimes was rapid-fire for days. Yet, in the final days, we knew that dying was the kindest blessing and gift we could give. I have never regretted those days or the decisions we made. We knew we were bathed in prayer and support of our congregation and confident we did what was best, not for us, but for that child.
    Finding that path is not just a decision, it is a symphony of decisions that form the chorus of how we lived and died as a child of God.

    1. Thank you, Ellen. Yes, you experienced the symphony of decisions as you walked through the death of your child. It's hard to imagine anything more difficult than that. I'm glad that you felt that support from your friends and loved ones, and from God, as you made those incredibly hard decisions.