Dying on her own terms: Hartford Pastor with ALS opts to remove feeding tube

HARTFORD -- Pastor Nancy Butler has decided to die on her own terms.

"I knew my suffering would reach this tipping point and caring for me would become impossibly demanding," she wrote in a letter to her congregation. "What I didn't know was whether or not God would want me to suck it up for some unseen purpose or end my life this way."

Butler was the pastor and founder of the Riverfront Family Church, which recently moved to Hartford.

Butler was diagnosed with ALS about two years ago. She recently decided to remove her feeding tube after a lot of personal reflection and prayer. The tube was removed Thursday morning. As of Friday night she was still staying strong, according to her sister.

"Even though it's not unexpected, it doesn't make it any easier for people," said Ben Dubow, a co-pastor at Riverfront Family Church. "She's been very vulnerable and very real and you really get a sense of some of the struggle and the pain. ALS is obviously a pretty horrific disease but she's kept her faith strong."

"It's very sad and it's been a very emotional time but it's not a sadness that's without hope," said Jen Moyer, another co-pastor at Riverfront Family Church. "Nancy and her family have thought and prayed about it and Nancy herself said that she has heard from God that this is a compassionate choice and that she can go forth and this is her coming home to God."

"Right to die" or "dying with dignity" legislation, which are proposals for doctors to assist patients with terminal illnesses in ending their own lives, is not legal in Connecticut, though it was proposed last year. This case wouldn't specifically fall under that, which involves the prescription of medication to end a person's life.

Read the letter Butler sent to her congregation:

Dear Riverfront,

I have decided to go off my feeding tube and vent this week and . . . how should I put it . . . die. I knew my suffering would reach this tipping point and caring for me would become impossibly demanding. What I didn't know was whether or not God would want me to suck it up for some unseen purpose or end my life this way.

I am a little surprised God is confirming this decision. Nice to know He isn't a sadist. He is oh so tender right now. He tells me my work is done and it's the right time to come home. Remember what God told me in my Sure Hands ceiling lift that squeezes me tight? He said, “I gotcha” every time I went up in that lift. I missed that feeling when I had to switch to a sling a few weeks ago. After I made this decision to stop the feeding tube feedings, I was cruising from my bedroom to my bathroom in the usual uncomfortable slump, head hanging down, wrists tied up with scarves, when God reassured me. Just as the mythical stork carries a newborn into this world in a sling, I am going to carry you out of it.

This feels like God's timing because family had already made plans to visit over Thanksgiving. I have been able to bask in the noon sun nearly every day this warm fall.  Last Friday, I enjoyed an extra long time in the sun and sensed this would be my last time communing with nature. Sure enough, I couldn’t get out Saturday and the weather turned with my intentions on Sunday.

The scripture that keeps coming to mind is the story of Jesus putting  compassion before rules. In Luke 14, the religious leaders give Jesus a hard time for breaking their Sabbath rule and healing on the Sabbath. He explains why—compassion. He said, who among you would not immediately pull your ox or your child out of a pit, even if it was the Sabbath? After considering my situation over and over again, asking God for wisdom, I kept coming to the same conclusion. I am choosing compassion. So, I am filled with peace, resolve, and a last minute surge of energy to pen these words.

I long to be with you every Sunday. I have no idea how it will be on the other side, but if my spirit can join you on Sunday mornings, I will! Here is what I would do in my new body. Get here at 9:30 am so I can participate in FamilyTime. Jen, you know how much I miss being with you at FamilyTime! Of course, I would be up front with the kid dancers and Doodle praising God through dancing and singing. I would probably be frustrated I can't do the word segment myself. I would laugh at Seamus, the famous Scottish rapper. I would relish the spontaneity and honesty of our children and be surprised every week. I would not make small talk in between services. Instead, I think I will play and talk with my grandchildren alongside Greg. I am tempted to join the Worship band, but I think I will simply raise my hands and bask in God's warmth and light.

During boring parts of the service I will be impish.  I might wag my finger at Greg for playing on his phone instead of listening. I will pick up Arunan's guitar pick and whisper good job while I am at it. I will give Liza a long hug. I will freak Colin out by touching his elbow. I will peer through Rich's camera lens with him and share his joy. I will high five Amy. Which one? Both! I will give Tiffany a thumbs up for being a good pastor's wife. That joke never gets old. I will pat Ben on the back and remind him we love him just the way he is, he doesn’t have to pretend. Also, God is well pleased with his service. I will ask the Holy Spirit to come teach and touch Willa. I will applaud when Kris' daily conversations with God spill out into a new power in his service.

Back to the service. When truth is proclaimed, I will shout, “Preach it!!!”  When the message lacks the preparation of prayer and obedience, I will grab a hook and drag you off to go back to your prayer closet. Hehe.  I will tap shy people who experienced God to share during testimony time. I will finally memorize the common purpose that I wrote.

Riverfront, you are one of a kind. Draw your strength from your prayer closet and fulfill your calling. I love you more than words can hold.

Your Pastor Nancy