Herb Myers gazes at the note taped to the wall in the kitchen, the one reminding him not to forget his lunch when he leaves for work. There’s also one on a table in the next room telling him which heat vents to open in the winter.
His wife, Kathy, made sure to leave handwritten reminders around the house before she died in March of 2017. That’s when she became possibly the first person in Colorado to employ a recently-passed aid-in-dying law, which helped her end a years-long battle with a debilitating and terminal respiratory disease.
“She’s still trying to take care of me,” Herb says. “She knew she wasn’t going to be here, so she was trying to keep me on the straight and narrow.”
It has now been more than two years since Proposition 106 passed by a 2-1 margin statewide, though implementation of the End-of-Life Options Act has been a slow process for everyone from large healthcare systems to individual doctors to hospice workers. To say nothing of patients considering the option.
Recent data from the law’s second year shows a significant increase in the number of individuals at least taking the step to obtain aid-in-dying medication, whether they eventually use it or not. And nearly twice as many doctors prescribed the medication as the initial year.
Herb went to great lengths to fulfill his wife’s wish that she be allowed to die on her own terms, even telling their story publicly when he grew frustrated at the difficulty of finding doctors willing to help them navigate the new protocol. As a result, he became an accidental resource for others encountering problems as the state’s medical community struggled to deal with the new law.
“I owe it to the people who are dying,” he says of his willingness to make himself available to those seeking advice. “I don’t think anybody should have to go through all the indignities that come at the end, the pain and suffering. I felt I should let people know what happened with us, how it went and where they could go to find help.”
Kathy suffered from the terminal stages of COPD that, toward the end, confined her to a hospital-style bed in the living room of the family’s Aurora home. She drank a mixture of secobarbital and a sports drink and passed away peacefully, with Herb holding her hand, the day before her 63rd birthday.
Though she had eagerly embraced this option, Herb found that carrying out her wishes wasn’t nearly as simple as they thought, even with the law behind them. Kathy needed two physicians to certify that she was mentally competent and had less than six months to live. Herb’s search met with little but frustration.
“I was calling hospitals, lots of private doctors, the state medical board,” he recalls of his attempts to find supportive doctors. “I spent hours and hours on the phone. I guess everyone knew (Proposition 106) would pass before the election, from the polls, but I wish they had been more prepared for it. Kathy wanted it right away.”
Once their story went public, a willing physician contacted the couple and the process began in earnest.
Another thing happened: their trials became a catalyst for broader discussion. They appeared on TV and radio as well as the newspaper. After Kathy’s death, Herb willingly fielded calls from individuals dealing with similar circumstances and anyone else hoping to learn from his experience.
Kim Mooney, president of Practically Dying, a Boulder-based end-of-life resource, recognized that while experts could talk about policy, people like Herb could bring a more personal perspective that carried tremendous value.
“The most powerful teachers are those who’ve gone through it,” Mooney says. “Herb was and has been an incredible resource, even getting on the radio with me. That first year, he was approached a lot because nobody knew where to go.”
Data released annually by the Colorado Department of Public Health and Environment shows that the second year of the law produced an uptick in the number of patients prescribed aid-in-dying medication — a 74% increase from 72 in 2017 to 125 last year. The number of physicians prescribing the medication rose to 66, nearly twice the previous total of 37.
To Sam DeWitt, regional campaign and outreach director for Compassion & Choices, the organization that has advocated for aid-in-dying laws, those numbers indicate a growing understanding of the process.
“We’re ahead of the game in terms of what we expected, we’re increasing access,” he says. “But every state is unique, all have their challenges. I can say in Colorado we’re pleased with where we are.
“That being said, it’s still new, and a lot of doctors are still learning about it,” DeWitt adds. “As far as normalization goes, our desire is that every doctor in the state understands the process around this and knows the protocols. We’ve got some work to do there.”
He notes that communities traditionally underserved medically — mainly rural areas and communities of color — tend also to be underserved when it comes to medical aid in dying.
Not all patients who obtained prescriptions for medication actually obtain it. Medication was dispensed to 86 patients in 2018, a jump from 56 in the first year. But data doesn’t reveal how many people used it — only that in 2018, 104 patients who were prescribed the medication died. Death certificates indicate the underlying illness as the official cause of death.
Whether additional data should be collected remains a topic of debate.
“I feel the numbers stand on their own very well,” DeWitt says. “What really matters is the patient’s underlying illness. Whether or not they took this medication is not a public health concern.”
The second-year statistics also show a shift in which aid-in-dying medications were dispensed. Secobarbital, the more expensive option, has dwindling inventory as it has become unavailable to the U.S. market — and the percentage of patients who purchased dropped from 41 to 31 percent. The shortage began late last year, DeWitt says, and more patients have shifted to a compound called DDMP, short for diazepam, digoxin, morphine sulfate and propranolol.
Nearly 69 percent of patients purchasing medication last year bought DDMA, about a 12 percent increase over 2017.
Life has moved on and things are different, but Herb has never stopped missing his wife.
A photo montage of Kathy in nearly every stage of her life hangs on the wall by the kitchen table. Her notes, handwritten throughout the year before she died, remain where she taped them. Herb still dreams about her, which makes the next morning difficult because it’s almost like losing her all over again.
Even now, he regrets time not spent with her — even the hours spent emptying 100 capsules of secobarbital onto a dinner plate, the necessary preparation for her to follow through on her choice. But he doesn’t harbor any regrets about her decision to end her life.
“Knowing what she went through, it’s hard to say it wasn’t good that she did this,” he says. “She was so determined this was the way she wanted to go, I have to say there are no second thoughts. Once she said this is what she wanted, I did everything I could to give it to her. I loved her.”
He keeps voicemails from her on his phone. Sometimes, maybe once every month or two, he’ll play the messages: Kathy asking him to pick up fish and chips for dinner on his way home. Telling him how her day had gone. Saying that she was doing OK.
“One of the things that’s been a little strange is I’ve kind of forgotten what her voice sounds like,” Herb says. “As soon as I hear it again, I know it. But it doesn’t ring in my head like it used to.”
After Kathy died, Herb attended two 13-week sessions of a faith-based grief sharing program to help deal with the loss. He listened to stories of horrible final days that other participants told about losing their loved ones. And he realized something: thankfully he had no such narrative.
“I’d hear these terrible stories and that’s what these people were left with,” Herb says. “What I was left with was her lying back on her pillow and going to sleep. I was lucky I didn’t have horror stories that some of these people did.”
He didn’t set out to insert himself in the aid-in-dying conversation, but he kept finding himself talking about it — largely because he was willing and felt some sense of obligation to help others avoid the difficulty he and Kathy went through.
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Not long after her death, he was invited to a meeting of a hospice ethics committee. Last summer, he agreed to participate in an online program in which people with opposing viewpoints on a controversial issue work on a service project — making blankets, in his case — while discussing the issue. He and a woman with a terminal diagnosis talked about aid in dying. He didn’t change his mind on the subject, but he says he appreciated her point of view as a valuable check on keeping aid-in-dying law from venturing into territory where it might be used over the wishes of the disabled.
Then there was the time he was driving to do a radio interview and he tuned into the station. To his shock and surprise, he heard Kathy’s voice — taken from an earlier news clip and used in a teaser for the interview.
“It felt good and it felt bad at the same time,” he says.
Not everyone has engaged him on the subject. Some friends have disappeared since Kathy died, he notes, but he blames no one. Maybe they didn’t know what to say. Maybe they didn’t know what to think about everything that transpired.
Now, as he makes his way without his wife, the sense of obligation to share his story has dissipated a bit. But not entirely.
“I kind of feel like my job is done,” Herb says. “But if somebody wants to talk, I’ll talk.”