In Colorado, terminally ill man’s public letter spurs lawmakers to act

Red-faced and teary-eyed, Julie Selsberg struggles to compose herself as she describes her father’s last days.

“He wanted to die at home at peace,” she says, sitting in a Denver coffee shop. “In the end he died suffering. He did not die peacefully.”

It was, she says, “intolerably cruel.”

But in the wake of her dad’s painful death and very public plea to keep it from happening to others, Selsberg has become the face of new legislation that would allow Colorado’s terminally ill more choices over how and when they die. The model is Oregon, where the terminally ill can receive a lethal dose of medication when they choose. Vermont and Washington have similar laws, and New Mexico and Montana offer legal protections to physicians who help those with incurable disease to die.

In 2013, her father, Charles Selsberg, 77, was diagnosed with amyotrophic lateral sclerosis, or Lou Gehrig’s disease, an incurable neurodegenerative condition often resulting in total paralysis and death. It was devastating news for the former Wisconsin real estate agent who exercised daily, rarely drank and spent every spare moment with his five grandchildren.

“He retired to Denver to be closer to his family,” his 46-year-old daughter said. “He came to all of my kids’ soccer games. He took them out every Thursday night for grilled cheese and burgers.”

As his symptoms progressed, Selsberg lost weight and had difficulty walking and breathing.

“He would come over and show me his hands and say, ‘Look what’s happening to me?’ His hands wouldn’t work anymore. He couldn’t hold a razor to his face and he was meticulous about shaving,” recalled his daughter, a lawyer and former New York City prosecutor. “He had to use a wheelchair and then never left the house.”

Afraid he’d become a “mind trapped inside a dead body,” the elder Selsberg considered moving to Oregon to take advantage of its Death With Dignity law, but legal and logistical concerns kept him home.

So in February of this year, he stopped eating. Then he composed an open letter to the Denver Post, typed by his daughter, titled “Please, I want to die.”

“I have to give my testimony to you now, because by next week I hope to be dead,” he said. “You see, I made a terrible mistake. I chose to live when I should have chosen to die, at my own hands, many months ago. Because now I can’t swallow the foods that made my mouth water or the sweets that added a few pounds to my middle. I can’t talk to my friends and family who surround me; my voice is barely audible, and every whispered word takes monumental effort. I can’t walk; my muscles have atrophied. I can’t breathe; I’m on a machine that inhales and exhales for me.”

He begged legislators to “show mercy on the terminally ill. Please.”

Democratic state Rep. Lois Court read the letter and joined with state Rep. Joann Ginal, a Democrat, to do something.

“We call it death-with-dignity or aid-in-dying legislation,” Court said of the bill she hopes to introduce early next year. “We don’t call it physician-assisted suicide. It’s not suicide. These people don’t want to die. They want to live but the disease is killing them.”

Mickey MacIntyre, chief program officer for Compassion & Choices, which advocates for end-of-life options, expects the right-to-die movement to grow as the U.S. population ages.

“We expect another 10 to 15 states to introduce similar measures soon,” he said. “The last Nielsen poll shows 75% of the country supports it.”

But many religions oppose the idea, and the U.S. Conference of Catholic Bishops has issued a statement condemning it.

“A choice to take one’s life is a supreme contradiction of freedom, a choice to eliminate all choices,” the group said. “And a society that devalues some people’s lives, by hastening and facilitating their deaths, will ultimately lose respect for their other rights and freedoms.”

The aid-in-dying movement received a boost recently when Brittany Maynard, 29, after being diagnosed with terminal brain cancer, moved to Oregon to die when she chose. Maynard chronicled her experiences in the media before ending her life in November.

Charles Selsberg didn’t have that option.

Shortly after he stopped eating, his suffering increased.

“It took dad 13 days to die. The literature says after the first two or three days of not eating your body becomes peaceful, but that wasn’t true,” Julie Selsberg said. “The thirst was brutal. It was all-consuming.”

She described watching her father die as akin to being crushed.

“I love my dog, yet I would never hold her in my arms and wait for her to die if I could end her suffering. But it’s OK to treat people that way,” she said. “If you get the drugs and know how you will die, it gives you space to enjoy life.”

Perhaps that space could have given her dad a few more days.

“He might have made it to my daughter’s birthday party,” she said.

nation@latimes.com