Wednesday, 5 December 2018

We had a tough day Monday at work, short staffed, very sick patients.  We were asked to add on a central line and I said no and then the circumstances were shared with me.  A forty-nine year old man with end stage ALS who needed IV access for MAID (medical assistance in dying).  We couldn't say no, I wouldn't say no.

I don't know if I've ever cared for someone with ALS and I've certainly never met anyone at the end of their life with ALS.  It wasn't like "Tuesdays With Morrie", to be honest, it was awful.  He was surrounded by family who all obviously love him and cared for him but he was unable to move anything other than his eyes.  He couldn't even swallow his own saliva which upset me the most for some reason and needed constant suctioning.  And his eyes, to only be able to communicate with your eyes seems so isolating, so terrifying.

I sent my two young coworkers to take care of him during his line insertion.  There were two doctors in the room too and family members.  Special circumstances, in honor of his time here on earth.  I've been with patients who are preparing for MAID before and it is always an honor to help them, to make sure that everything will go well for them as they leave their loved ones.

This morning I googled his name and he died on Monday after he left us.  It was so nice to see a photo of him when he was healthy and full of life, he had such lovely eyes.

It always amazes me and saddens me to see people suffer so much before they die.  We all die and we all suffer in our own ways, both mentally and physically.  What might be suffering for one might not be suffering for another, but I'm not a fan of physical suffering.  It seems cruel and unnecessary.

I'm thankful my patient got to decide how his life ended.


  1. I have been with one friend as she actually died and had two other friends who died within a few hours of me seeing them. The friend I was with went so miraculously peacefully and quick and easy (after a very long illness in which there was suffering) and I was blown away at how beautiful a process it was. Labor and birth, in reverse. I don't think my other friends suffered either. I hope not. But I know this is unusual.
    And oh. I'd forgotten. I was with my mother when she died but she was virtually gone already when I got there. Long story and not a happy one.
    I so wish I lived in a state that allowed assisted death.

  2. It was a privilege to sit beside my mother. She brought me in and I eased her out. But I don’t think I could do it for a living. It takes special people. I’m not sure that’s me. Hugs to you my friend for an abundance of reasons.

  3. My heart goes out to the 49-year-old man and his family and to you and all involved in his care. Your post is a moving tribute to his struggles and his decision.

    A dear friend of mine, an artist, died in 1991 of ALS, 3 years after his diagnosis. He and one of my oldest friends had been together since meeting at a young age. He was 39 years old when he died. The last time I "talked" with him was on the phone. My oldest friend was the only one who could understand his speech at that point, but he expressed a desire to "talk" with me. I listened and struggled to understand but could not understand a single word. I said something in response. To my great surprise and delight, he laughed warmly and heartily. ALS had not taken away his ability to laugh. Laughter must come from a different place than speech. His laughter was just as I remembered it, not at all affected by ALS. I was living 1200 miles away from them at the time and was in touch by mail and phone calls. I remember when my oldest friend called to say that he had died. She was exhausted and relieved. He had a written a letter the year before he died, to be opened upon his death. In the letter, he thanked her and his many loved ones, wrote at length about his gratitude for a full life, and expressed this,

    "I sincerely hope that you feel some joy for me because I've always thought of death as a kind of graduation. No doubt, I'm finally really living again, in the truest, purest sense."

    He signed it with "My eternal love to all .... Kevin

    Looking at the beautiful photo that accompanies your blog post, I can understand why some of the Norwegians related to me continued west from the farm land of Minnesota and then north to Alberta where they finally felt at home again. That could almost be a fjord.

  4. Living in a state that does not have Medical Aid in Dying laws it is my biggest fear not to have end of life choices if need be. But we should all have the kind of compassionate care that you so obviously give to your patients. You are a blessing.

  5. Medically assisted death should be available everywhere. It makes me crazy that we are so ready to do that for our pets and often so reluctant to give humans the same dignified and humane out.

  6. I'm sure you don't live in Idaho. We don't have Maid but my oldest son lives in Oregon and they do.
    Saddly I've heard some people think they basicly pull people of streets and give shot and then there dead.
    I understand there quite the process.
    If you find the time stop in for cup of coffee.