26 July

“Jon, Please Help Me Die…” What To Hope For?

by Jon Katz
Brighter Days

I was sitting in the farm kitchen today talking to Carol Gulley, and Ed’s daughter Maggie came in and said that Ed wanted to talk to me, and as she said it, I heard him calling out for me from his bedside. It was a thin, gravelly voice calling “Jon, Jon, Jon…”

I came into the room where Ed was and came over to his hospital bed.

His eyes were open, he was crying and looking around for me.

He reached over and clasped his right hand, his good hand, on my left wrist. He looked me in the eye with an expression I had not ever  seen before.

“Jon,” he said, weeping now, closing his eyes but still gripping my arm, he has still a powerful grip.

“Jon, please,” he said, “please help me  die.”

I pulled a chair up and took his hand in mine and leaned forward, and he repeated the sentence, about a dozen times: “Please, please, help me to die.”

“I’m done,” he said softly, and I recognized these words as quite often being the last words some people speak before they die.

I am not often speechless, and even more rarely so caught off guard.

I was not sure of how to respond at first, this had never happened to me before, no one had ever asked that of me before, and I felt my heart react to these words and my pulse quicken. Ed was crying now, and i wanted to cry too, for him and for me.

He opened his eyes and looked into mine, and I kept saying, “I will try to help Ed, I will help you, I promise,” although was not sure of what precisely I was promising to do or whether it was a promise that I could keep.

I said those words a dozen times, and I know Ed heard them. For sure, it was one of the most profound moments of my life.

This changed everything for me.

Ed is on morphine now, it has quieted his mind and brought him to a deep sleep, and it is the hospice way to increase the doses of morphine slowly until the dying patient is comfortable, free of pain, and falls into a deep and continuing sleep.

Nature is then free to take its course. That is a private and personal decision, almost always made by the family.

Increasing Ed’s morphine dose was the only way I could think of to help Ed to die a natural and peaceful death and ease his suffering, but that was not up to me. That was a decision that only hospice doctors and nurses or Carol and her family could make.

Still, I felt I had to be Ed’s advocate, this was a promise i made to him at the beginning of his illness, to help him to die if it came to that. He told me clearly how he wished to live and how he didn’t wish to live. He asked me to remember.

I felt I had to step over the line I had drawn and speak for him.

I asked Carol if I could speak to her about Ed’s  request, and she said yes, we sat down at the kitchen table. I told Carol she had done everything possible for Ed, and it seemed to me it was time for her to  draw into herself and speak with her family if she wished and talk and think about what was best for Ed.

I knew she was thinking long and hard- and painfully – about what her choices were.

I said I didn’t know if Ed was actively dying or not, neither could anyone else, but he did seem clear about wanting to go before things got any worse.

Carol’s face radiated great pain, fatigue and sadness.

She said she had been married to Ed for 47 years and never once imagined she would be in the position she is in today.

I told Carol I think she loved Ed more than any other person could,  and I knew she was strong and brave and smart and would make the best decision for him in her own time. I urged her to trust her own instincts and heart and follow them.

I asked if she wanted to call me later at home, but I knew she wouldn’t.

Carol doesn’t do that.

I went to Maggie and sat with her and we both sat right next Ed for nearly an hour and talked. She had just returned from a trip to Washington with her daughter, Ed was eager to see her when she got back.

I talked about morphine and hospice and suffering.

I don’t feel at ease recounting the whole conversation, but I did say Ed seemed eager to leave the world, I know this is not the way he wishes to live, bound to a bed all  day, unable to sit up, breathing heavily in stupor and pain, and dependent on others to bathe and shower and clean him.

Ed feels humiliated by the people caring for  him and doing the thing he always did for himself.  He cannot make the transition from strong and outspoken farmer to helpless cancer victim awaiting the end.

He says his life has no purpose now other than to make his loved ones sad and confused and tired. He says he wants to die. Ed is exhausted and in pain, he feels there is no purpose to his staying alive or prolonging his life.

I am not certain  what Ed wants me to do, but I am honor bound to try to understand and carry out his wishes. The best way to do that is to talk softly and gently and to convey what it is I believe he said he wants.

To be his advocate, within bounds and limits. And to  respect the boundaries of the family.

That is all I can do, and all I should do. Of all the people around Ed, I am the only one who has no right to be part of these decisions, I really don’t. I respect this line in the sand.

I believe Ed also knows that no one around him, including me, would actively or purposefully facilitate his death. It is difficult to accept that this is truly what he wants, or how he would want me to do it.

There are ways to make him more comfortable, there ways to help him sleep, there are ways to ease his increasing pain.

And yes, there are ways to make death quicker and easier that are well within the law and the ethics of medicine, and the call to compassion. But those are not for me to practice, advocate or argue for.

Still, I had a sinking feeling in my stomach, a helpless feeling, my friend was begging me for help, and he meant it. He spoke to me with great feeling and conviction, a plea from the heart.

If he feels helpless, so did I today. My heart sank in that room.

Carol Gulley and her family love Ed very much and they are just as aware as I am of the options they have,  and the choices they may have to make.

But I was shaken and spinning from Ed’s heartfelt request. I was looking for firm ground.

What does friendship mean, really, and how far do you take your vows to a friend?

Ed does not have the option in our society to take his life or have someone else do it for him, the options we have for our dogs and cats. No one really wants to deal with death.

But he has certainly made clear to me that he does not wish his life prolonged in any way. Some things just cannot be easily resolved. Is this my business any longer?

Perhaps it’s the morphine speaking, or maybe it’s the cancer speaking when Ed asks me to help him die.  I looked deep into Ed’s eyes and can’t really say. I felt it was Ed, I believe it was, I trust what I saw.

As I finish writing this, Carol messaged me that Ed is “resting nicely” and told his daughter Maggie that he was going to draw Thursday morning. “Love the crow,” she said, it was nice of her to think of me, at so late an hour.

So death, like life, is full of crisis and mystery. I am confused, a bit lost,  drawn to stepping back over my line, standing down. And tonight, I suspect i will stare out at the night.

Lucky people dwell in a world clearly and rightly defined, where even the darkness is no surprise, but is, in fact, an opportunity.

Before I go to bed, I will sit in my chair with Red at my feet and think about what happened today, and what I was asked to do. It may not ever happen again.

I will digest that and meditate on it for awhile.

The Ed I saw today could not draw a line or make a sketch. I’m not God, perhaps he will tomorrow. I can’t know.

But my heart is still heavy and low.

Life is beyond all of us sometimes, and tonight, I am  unsure of what to even hope for.

 

18 Comments

  1. Omg, Jon, my sister Marion is at the exact stage Ed is! She is palliative in hospital with breast, bone & now brain cancer, waiting for admission to hospice closer to our home (beds are full right now). Don’t know if she’ll make it into hospice but I am paying her insurance difference between semi-private room to private room so she at least has some peace during her final days. She is so young (58), always so bright, and always tries to be cheerful and hang onto her old sense of humor in between pain medication doses, but mostly sleeping now. So sad. I know EXACTLY what you are going through! All the best to you and I hope you get even a little sleep tonight.
    Fran Brummer (Etobicoke, Ontario, Canada)

  2. IMO you did just the right thing — exactly the right thing — the way you advocated for Ed and the way you understand that the family has to make the decision — you can’t force this but bless you for speaking up for Ed.

  3. Jon, you are right to advocate for Ed, but you are also right that the family must make these hard decisions. I am glad you shared your conversation with Ed with Carol; as a hospice nurse I find that patients will often express difficult wishes with friends and/or hospice staff rather than family because they feel they are letting their family down in some way by not “battling on.” It appears that you and Carol are close enough that you can address these concerns. You are honest and straightforward and I am sure that is one of the reasons you are good friends. Trust your experience and your gut.

  4. Please know that you did the exact right thing to initiate the conversation, and yes it makes the heart heavy and the mind tilt even as it IS the right and loving thing. I say this as someone who has worked in hospice, and also as someone who watched my father in law get increasing doses of morphine by hospice, feeling that each dose carried him further away, but knowing it was the loving thing to do. Keep breathing and sending your heart love Jon, as it is going through such a difficult thing now, but also such a deep and loving thing. Ed knows your love, and he knows you are there for him. Even if he rallies, temporarily, you did the exact right thing to initiate the conversation.

  5. Jon. My heart breajs for you during this moment. Your writing, I hope and I know is inspiring people to have important conversations on end of life decisions. In California we have the right to die law which gives terminal patients the option to take a prescription from their doctor to painlessly die. Of course many do not take the option but I believe it is important for everyone to have the right to it. You are in an extremely sensitive situation. I am holding you and Ed in my ❤. You are a good friend Jon. The answers will reveal in time. Death is as messy as life. No easy path in or out. Thinking of you always.

  6. Dear Jon…what a gift you are giving to Ed and Carol. I lost my best friend of 30 years to cancer. At the time we lived two hours apart. Every weekend I would travel to her home and sit with her for the 10 months until she passed. I was the only non family member she would allow to see her. She asked me to be the one to decide to “pull the plug” if it came to that. And while it certainly was not at the top of my list of things to do for her, I humbly signed the papers. She knew her husband would never make that decision (we all laughed about that!). And at age 50 something, having never even smoked a cigarette, I smoked a joint with her and watched it ease her pain. After she passed her husband found a journal of her first few months that no one knew she secretly kept. You can imagine the poignancy of it…her humor and love for life shining through. To this day, I feel that holy time with her deeply in my heart. It was an honor and oh so humbling and enlightening to travel those last 10 months with her. And it was her final gift to me. Ed is giving you a wonderful gift…a holy gift…one I believe you will cherish forever as compelling a time as it is right now. No matter how one chooses to measure the depth of a friendship, it doesn’t get any deeper or closer than this. Bless you.

  7. I have found yours and the Gully family’s honesty during the past several weeks very humbling. Maybe even spiritual.
    I’m drawn to it, probably for these reasons and others, such as my own experiences. Not morbidly drawn, but empathetically drawn. When Ed dies I will feel sadness. But also joy that in his dying he, through You, has given a gift. I guess that’s my take anyway.
    Also, I suppose I will be reminded of those I’ve lost. And, with that I will remember both sadness and joy.
    As always Jon, thank you for sharing. I imagine it can’t be easy.

  8. Jon, what an inspiration you are to me. I hope that when my time comes, I will be so fortunate as to have a friend such as you to sit with me and read. Ed is such an inspiration to us all; I hope he realizes that by allowing us along his journey he has given us a whole new insight in how to accept and go on. Carol, in her role as caregiver, should be so proud. I have walked in her shoes and it is one of the most difficult things in life to endure..watching our spouses slowly fade away. In reading the posts about the Gulleys, I have learned so much and am proud of you and that whole family.

  9. Jon – I was so moved to read this last night. I love that you promised to help ED to die- even if you are unsure about what that entails . HOw fortunate you are to have each other even in dying. WHen it comes to death, no one has brought me more insight and comfort than Stephen Levine, who himself had a difficult death, Perhaps this might bring you some help at this time. I am just in awe of your willingness to be with your friend during all of this… https://www.salon.com/1997/06/02/levine/

  10. Thank you so much for advocating for Ed. Morphine is such a gift. Thank you for doing the last thing that you can do for someone you love, advocating for a peaceful and painless end. And I am thanking you, though I do not know Ed or his family, because a gift to one of us is a gift to all of us.

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