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Aid-in-dying process not as graceful as Colorado couple imagined

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Wednesday, Dec. 27, 2017 10:59 AM
Susan Huschle, whose husband, Kurt, used the aid-in-dying law as a terminal cancer patient on July 16 speaks about the tiring process of losing her husband. It proved difficult as the drugs took far longer to act than the couple anticipated. Huschle holds a sculpture of her and Kurt’s hands that was made before his death.

DENVER (AP) – A year ago in November, when Susan and Kurt Huschle cast their ballots in favor of the state’s aid-in-dying law, they viewed the measure with the personal detachment of a distant what-if.

Three months later, Kurt faced a terminal diagnosis of a rare bile-duct cancer. Pain mounted exponentially, blasting through his medication. His once-sturdy frame rapidly diminished. And suddenly, the theoretical idea of ending his life with a doctor-prescribed medication became a very real option – one he desperately wanted to have in hand.

“We voted for it,” Susan recalls, sitting at the kitchen table where she and her husband first heard the news that he didn’t have long to live. “But we didn’t know anything about it.”

On July 16, exactly seven months after the law went into effect, Kurt took aid-in-dying medication and died, at 58, in his bed at the couple’s Highlands Ranch home. But the process, from paperwork to prescription and finally to practice, bred frustration, stress, uncertainty and, ultimately, a wife’s panic in his final hours.

Experiences varied as Colorado became one of seven jurisdictions – along with Oregon, Washington, Montana, California, Vermont and the District of Columbia – to allow patients to choose the option.

“I think many people have the perception that immediately after the law becomes effective, everyone would be able to immediately and easily access it through their own medical providers,” says Kat West, national director of policy and programs for Compassion & Choices, the national nonprofit that drove the initiative for the medical aid-in-dying measure. “That’s just not reality with any new law.”

Access issuesShe spotted him walking toward her in the hallway of a McDonnell Douglas Aerospace building in Huntington Beach, California. It was 1987, and Susan was a struggling single mom with three sons. Kurt was a year into his first job out of college.

Though he was five years younger – she got lots or ribbing for robbing the cradle – they carved out a life together despite the challenge, for Kurt, of suddenly becoming a stepfather. But he grew into that and, years later, even more enthusiastically embraced the role of grandfather.

Susan characterizes her husband with a wide array of descriptors. Engineer, drill sergeant, intellectual. Cro-Magnon man, sports buff, bookworm. But the guy with the off-kilter sense of humor came wrapped in a sunny personality and an irresistible smile. They talked on the phone constantly, often several times a day, to the point that relatives kidded them about acting like teenagers.

“We didn’t care,” Susan says. “... The love he gave me healed so much pain in my life. Every night Kurt told me, ‘I’m going to take care of you.’”

Eventually, she would assume the role of caregiver after Kurt’s cancer diagnosis, and do her best to help him fulfill his choice to end his suffering through aid-in-dying medication.

Compassion & Choices now counts 81 health care facilities and 16 hospices statewide with policies supporting an individual’s choice to pursue aid in dying. Catholic-affiliated systems opposed the initiative on religious grounds do not participate, and some other facilities are still formulating policies. Still, West says, doctors faced with an aid-in-dying request for the first time may need time to consider it.

Although West concludes that the law is working as intended, there remain access issues typically associated with a “ramp-up” period while both providers and patients become familiar with it.

Many hospice physicians have opted out of writing prescriptions for aid in dying, say Tarrah Schreiner, CEO of Sangre de Cristo Hospice & Palliative Care in Pueblo and also vice chair of the statewide Hospice and Palliative Care Association of the Rockies.

Policies and procedures can vary among hospice organizations, she adds, and the law went into effect so quickly – just weeks after the election – that there was little communication from the state about hospices’ role. Consequently, hospices often have learned from counterparts in other states that have had the law in effect longer, while doing their own intensive training within each agency.

“I try to teach from the standpoint that it doesn’t matter if you’re for or against it at this point, it’s a state law in Colorado,” Schreiner says. “We need to support the patient and families as they’re making the decision and are or are not taking the medication. We all need to get on board for that.”

Getting medication not easyLate last year, Kurt and Susan were embarking on an early retirement, a chance to catch up on years of postponed getaways and, for Kurt, to see whether powering down might ease the persistent and worsening symptoms of what doctors initially diagnosed as irritable bowel syndrome.

The abdominal issues persisted, and Kurt eventually found a new doctor who removed part of his colon to treat diverticulitis.

But his pain would not abate, and the accompanying loss of sleep wore him down until he took a buyout from his aerospace engineering job and retired in early November 2016. Meanwhile, he continued to press doctors for answers, fearing the worst.

On Feb. 13, Susan recalls, their home phone rang.

“I hear him answer, ‘Yes, I’m at home. Yes, Susan’s with me. I’m sitting down,’” she says. “Then the doctor told him his colon and stomach were normal, but 60 percent of his liver is covered in cancer.”

Suddenly, the option of medical aid in dying gained instant currency.

Susan Huschle, whose husband, Kurt, used the aid-in-dying law as a terminal cancer patient on July 16 looks through photos of her late husband. Kurt, who had weighed about 185 pounds before his Feb. 10 diagnosis, died at just 126 pounds.
AAron Ontiveroz/The Denver Post via AP

Under the new Colorado law, Kurt needed two doctors to certify that he was mentally competent and had less than six months to live. Susan says the first doctor they spoke with agreed to follow Kurt’s wishes, but then seemed evasive to the point that, after three months, they sought another doctor who seemed more willing to help.

The process itself, just securing the diagnosis and obtaining the prescription, added to Kurt’s stress as the couple felt that they were having to learn the steps and then explain them to medical providers. Once they had completed the necessary forms and gotten the doctors’ go-ahead, there was still the matter of filling a prescription for the medication that would end his life.

But even with a prescription in hand, procuring the medication wasn’t easy. When they finally found a pharmacy that could fill it, they learned it was the first time that location had ever filled an aid-in-dying prescription. They were told the morphine compound would work in two to four hours. The required request-for-medication form notes that most deaths occur within three hours, though some can take longer.

On July 10, Kurt and Susan celebrated their 24th wedding anniversary with a brief trip to a nearby restaurant. Kurt, who slept most of the day, could barely keep his eyes open.

They had set up Kurt’s bed in the main floor study of their two-story home, so he wouldn’t have to negotiate stairs, and hospice had come on board. Six days after their anniversary, Kurt decided that the time had come.

Around 4:30 a.m. July 16, Susan heard him shuffling around in the living room. She got up and went to her husband, a shadow of his former self who in the previous six weeks had lost 45 pounds.

“He’s walking toward me,” she recounts, “and I’m walking toward him. And he said, ‘I want to die. Will you just let me go? I want to go!’ And he starts crying. He said, ‘I’m in pain.’ I said, ‘We’ll figure it out.’”

Kurt decided he would take the compound at noon. Susan sent the nurse away because they had decided to do this by themselves, and then sat next to Kurt on the bed and read aloud some of their anniversary cards.

That brought them both to tears, and Kurt finally told her, “I want to go now.”

She got his medication and followed the directions, mixing two small bottles into a bigger bottle and shaking it. Some spilled on her, and when she went to wash it off, he began drinking the compound.

“But with every sip,” Susan says, “he’s choking and coughing, choking and coughing.”

It went on for nearly 20 minutes. Then he reclined, and his eyes rolled back and he began to breathe differently – two breaths, then a long pause, then two more. Susan thought he would pass any minute and laid next to him. Although he never regained consciousness, the gasping, uneven breathing continued.

Two hours passed. Then four hours.

“At 4:15,” Susan says, “I started to majorly panic.”

As she tried without success to reach a doctor, a couple more disturbing thoughts crossed her mind: She feared that Kurt, despite his unconsciousness, could hear everything – the calls, the desperation in her voice. And she wondered if his choking when he first took the medication meant that he had aspirated enough to delay its effect.

Around 7 p.m., she asked hospice to send a nurse. Shortly after the nurse arrived, a doctor called and suggested some additional measures. Soon after, Susan saw her husband sit up slightly and appear to retch three times. She ran to his bedside. Then he slid back into his pillows and stopped breathing.

He died at 8:15 p.m.

Susan probably will never know why it took so long.

The effectiveness of drugs can vary with the individual, though they normally work in a matter of hours. But in one unusual case, a Colorado patient who used the more expensive Seconal took 2½ days to die.

Kurt’s brother, Joel, tracking the process by phone from California, says that while his brother’s death didn’t unfold as simply as everyone hoped, it couldn’t have been worse than what the disease already was putting him through.

“I think he went out as gracefully as possible under the method used,” he says. “It wasn’t ideal, and I think it was rougher on family than it was on him, truth be told.”

Without question, it took a toll on Susan, especially the fact that Kurt’s apparent coughing and choking after swallowing the medication kept them from saying the kind of goodbye she had imagined. In the immediate aftermath, she describes herself as “numb, in shock, stressed.”

In the five months since her husband died, she has replayed the experience again and again, reviewing what she considers a “nearly insurmountable” process. Kurt’s decision to use the aid-in-dying protocol was his own, and it was the right one, she says. And she’s hopeful that in the future the process will be less fraught with roadblocks, uncertainty and frustration.

“This law did not work in the way intended for Kurt, but I still believe in it,” Susan says. “I want it to be better. I want it to be fixed, and not put on the dying patient. With it being new, all we can do is be forgiving of that part.”

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