Facing imminent death, he wanted to go on his terms. Why governor's inaction prevented that

Delaware News Journal

The afternoon of Sept. 11 would have been perfect for a ride in Chuck Knothe's Corvette.

After several days of cooler weather, temperatures had rebounded to the low 80s. The sun, unobstructed by clouds, shone bright. A 3-mile-per-hour wind coming from the southeast just barely rustled the trees in Chuck’s Brandywine Hundred neighborhood, their leaves still lush and green as if resisting the impending change in seasons.

Despite this weather, Chuck’s Corvette sat in the garage, the door closed firmly behind it. It gleamed next to the red SUV his wife, Mary Ellen, drives. But there was no chance it would make it out of the car port this Wednesday afternoon – or any other time in the near future.

Chuck died Monday morning, just five days after being interviewed by Delaware Online/The News Journal. His death came far quicker than family, doctors and his chaplain expected.

Last year, the 79-year-old was diagnosed with esophageal cancer. He underwent chemotherapy and radiation and a surgery that doctors said could potentially extend his life by up to a decade. The Knothes and their adult children were frightened but hopeful.

For several months, things were looking up. Then came one medical problem after the next. Then, the cancer metastasized and spread to his liver and kidneys. Mary Ellen suspected it was elsewhere, too.

Instead of getting behind the wheel of his Corvette, the longtime car enthusiast sat nearby in a beige armchair nicknamed “Chuck’s Chair.” He was surrounded by medications and tissues and feeding supplies, his skin yellow from jaundice.

Chuck couldn’t get comfortable, no matter what medication Delaware Hospice nurses gave him. They were “wonderful,” Mary Ellen said last week, and tried their best to control his pain. But unless they had some miraculous way to regrow the fat on Chuck’s body so his skin wasn’t taught against his bones, he spent the last few weeks of his life uncomfortable – and later, in a morphine-induced haze awaiting death.

There was a way Chuck could have escaped from this daily agony and died with dignity, as he called it. But Gov. John Carney’s inaction stymied that.

This summer, the Delaware General Assembly passed a bill allowing physicians, with significant safeguards, to prescribe life-ending medication to terminally ill patients with less than six months to live. Doctors themselves do not administer the drugs – it’s up to patients to do so on their own.

Yet as of Sept. 6, Carney’s staff had not yet picked up the bill from the Senate, despite the governor signing more than 100 pieces of legislation already this year. That includes several bills introduced and passed in the last week of the session, which Carney signed within days.

The governor’s office blamed the delay on the volume of legislation passed, with spokesperson Ashley Dawson telling Delaware Online/The News Journal there were “237 bills passed, with many in the final weeks of session, and our legal and policy teams are still working through them.”

But numerous supporters of medical aid in dying, including Mary Ellen and Chuck, have both publicly and privately questioned whether the inactivity is deliberate, given Carney’s Catholic upbringing and that he’s vying for the Wilmington mayoral seat.

When asked by this news organization if the delay had to do with last week’s primary, Dawson did not acknowledge the question.

For Chuck, any decision the governor ultimately makes – whether he signs the bill, vetoes it, allows it to become law without his signature or never has his staff bring it to his desk, called a pocket veto – comes too late. Chuck knew he didn’t have the time left that it would take to obtain the medication.

But he held out hope that if not him, others in similar situations would soon be able to take advantage.

“I’ll only be around for two or three weeks,” he said from his chair on Wednesday, each word a chore to enunciate. “But getting the governor to (sign) the policy – if I could do that, I would think that would be a good thing.”

An unexpected diagnosis

For most of his life, Chuck was relatively healthy.

Like many in the legal profession, he worked hard. A real estate attorney running his own practice, he had many long days and weekends.

Yet even the toll of work couldn’t deter him from being a “hobbyist” – a word he used that elicited chuckles from those who knew him well.

Chuck’s first degree was in mechanical engineering, which influenced his “hobbies,” Mary Ellen said. Because he loved cars, he was always tinkering with them. He would take things apart, put them back together and ensure they ran even better.

He was also a master woodworker, yet another talent he downplayed. His craftsmanship was evident in the bedroom furniture he and his wife used, which is sturdier and better-looking than some items sold by big-name stores.

When he was in his mid-50s, Chuck’s work habits and less-than-perfect diet caught up to him and he was diagnosed with Type II diabetes. But even that wasn’t earth-shattering news and he adapted.

He traded sandwiches for salads and swapped beer for six glasses of wine per year. When he wanted to splurge, he’d indulge in sugar-free ice cream.

In part, that’s why he didn’t initially think much when he had trouble swallowing one night at dinner last year.

The next night, however, he struggled again. Still unfazed, he scheduled a doctor’s appointment.

The nurse practitioner who later saw Chuck didn’t quite share his nonchalance. She referred him for an endoscopy, where he was informed he may have esophageal cancer. He was sent to a specialist.

Soon, he was told that the cancer was serious, but there were options. If he underwent chemotherapy and radiation to shrink the tumor, surgeons could operate, extending his life a number of years more.

If he did nothing, he’d likely have a year to live.

The decision to fight the cancer was made with relative ease, Mary Ellen said. Chuck didn’t want to die and the prognosis, despite being cancer, appeared relatively good.

In last week’s interview, Chuck noted that he was a statistics guy who taught at Case Western Reserve University in Ohio for a spell decades ago. He said he understood, statistically, what his life expectancy was.

“I was an engineer, I understood the (bell) curve,” he said from his chair, his legs wrapped in a blue Snoopy blanket.

Grueling treatment

Like most chemotherapies and radiation, treatment was difficult. The surgery, performed Sept. 15, 2023, was also grueling.

Doctors removed Chuck’s esophagus, then reconstructed the organ using the top of his stomach. That made his stomach “tiny,” Mary Ellen said, which in turn made eating difficult.

He also developed a drop foot, or difficulty lifting the front part of his foot. Doctors attributed it to chemotherapy or radiation and ordered physical therapy, which helped. Things were generally looking up.

In January, four months after his surgery, Chuck fell and broke his arm. Still, he “fought back and got better,” Mary Ellen said.

“Then his gallbladder ruptured without any warning,” she said. “Lots of ... poisonous things were in his system.”

That was in May of this year. Chuck began to deteriorate significantly after that.

One scan after another showed bad news. Doctors couldn’t find the pieces of his gallbladder, a pear-shaped organ attached to the underside of the liver that stores and releases bile to aid digestion. His blood test results also weren’t good.

Finally, last month, Chuck’s oncology team met with him in the hospital.

There was nothing they could do that would cure him. He likely had two or three months to live, they said.

His time proved much shorter than that.

'I have no energy, no nothing'

Unlike many advocates for medical aid in dying, Chuck was never an activist.

He never lobbied lawmakers to pass the legislation, as a number of Delawareans have been doing for about a decade. In fact, he never deeply considered how, or perhaps even if, the practice would affect him.

Sure, he’d formed opinions over the years on high-profile cases such as that of Terri Schiavo. He’d also followed some of the debate over euthanasia and assisted suicide – two terms that advocates stress are different from medical aid in dying.

(The distinction is a legal one that comes down to who administers life-ending medication – euthanasia and assisted suicide are acts performed by another person, while aid in dying refers to a patient administering the medication themselves.)

Yet he “wasn’t an advocate for years,” Chuck acknowledged last week, often losing his train of thought before fully answering a question.

“But I am today,” he added, determined to string together multiple sentences in one go. “Because I recognize today that I have no energy, no nothing.”

The idea of dying on one’s own terms before losing complete control of their faculties may be a no-brainer for Chuck and Mary Ellen, who noted last week that her husband received nutrients through a feeding tube.

“All he's had today was a couple of spoonfuls of Italian water ice, and by a couple, I mean maybe one actually whole one,” she said. She later added that he could not drink, walk or even turn his body without help.

But for others, medical aid in dying is anathema.

In the Delaware General Assembly this year, debate over the bill echoed that of abortion rights.

Some legislators invoked God in their arguments, with Sen. Dave Lawson arguing the bill is “contradictory to what He preaches.”

“How much more despicable can we become,” the Republican representing Marydel asked. He later added that “whether you believe in God or not, whether you’re an atheist or not, He still brought you in, He takes you home.”

(Democratic Sen. Laura Sturgeon briefly interjected, noting that government is supposed to “separate Church and State.”)

Others made the “slippery slope” argument that abortion opponents also often invoke.

“Once society begins to accept the premise that some lives are not worth living, where does it end?” asked Sen. Brian Pettyjohn, a Republican representing Georgetown.

“We risk normalizing the idea that suicide is an acceptable solution to suffering,” he continued, “which could lead to broader and more dangerous interpretations potentially encompassing those with non-terminal illnesses or mental health concerns.”

But proponents of the bill are quick to point out that Delaware’s legislation, as passed, is narrowly tailored. It’s also very specific about who is eligible and what safeguards must be in place.

Those who request life-ending medication must be Delaware residents, unlike some states that do not have a residency requirement. Residents must also request the medication for themselves – it cannot be done on a person’s behalf.

To be eligible, a patient must have a terminal illness with a prognosis of less than six months to live.

“An individual cannot qualify for medication to end life under this chapter solely because of the individual's age or disability,” the bill says, adding that a mental illness is not a qualifying illness.

Once a person is deemed eligible and makes an oral request for the medication – which typically induces death in about three hours – they must perform numerous additional steps, including:

• Submitting a second, written request that is witnessed by at least two adults (with limitations on who can be a witness),
• Being provided the opportunity to rescind their request and;
• Undergoing two waiting periods before a physician can prescribe the medication.

According to lobbyist organization Compassion and Choices, even once prescribed the medication, less than two-thirds of patients actually use it.

Additionally, healthcare facilities are allowed to prohibit physicians or Advanced Practice Registered Nurses (APRNs) from prescribing medication as long as they notify all providers and the public of the policy.

Prescribers can also refuse a request for any reason.

For Mary Ellen and Chuck, as well as the many other proponents of medical aid in dying, the argument comes down to choice.

Individuals who are psychologically sound should have the right to make decisions about their bodies and when it’s time to go, they say – especially given that the final stages of death are often ugly.

"I don't think he's a perfectly healthy person who says, 'Oh, I want to end it,'" Mary Ellen said. "He's a very sick person who knows there's no chance of recovery and it's only going to get worse."

As death draws near, many patients slip into a state of unconsciousness or semi-consciousness and cannot communicate verbally. The skin on their knees, feet and hands often turns a gray or bluish-purple color, and their heart rate slows. Some may develop a fever.

In the hours before they die, their breathing typically changes. Sometimes, they develop what’s called a “death rattle,” or gurgling or bubbling caused by saliva or mucus buildup in the chest. (It’s usually not painful for the patient, but it can be upsetting for their loved ones.)

Other times, the death rattle doesn't come at all, but patients begin to alternate between deep, heavy breaths and shallow or no breaths. In their final moments, breathing may slow and quiet before stopping altogether.

For Chuck, the idea of spending his final days this way – and having his partner of 51 years watch him deteriorate like this – was distressing.

“It doesn’t make me happy,” he said from his chair on Wednesday, growing increasingly tired as the interview approached the 40-minute mark.

"In fact," he added, "and you're not going to like this statement, but I'd like to be able to exit tomorrow."

Epilogue

Two days after Delaware Online/The News Journal visited with the Knothes, their chaplain also present at the time, Mary Ellen sent a text message.

“The nurse persuaded him to try the oxygen and to take morphine on a regular schedule,” she wrote, a levity to her message. “Things seem good right now.”

Less than 48 hours later, a little before 11 a.m. Sunday morning, she wrote again.

“I don’t think Chuck will last much longer,” she said. Later that day, she added: “It’s hell.”

Chuck made it one more night. About 8 a.m. Monday morning, he died.

As Mary Ellen waited for the official pronouncement, and later, to sign paperwork, she listened as Chuck’s words from five days earlier were read to her:

“At the end of the day, I understand that we’re all going to die, that we’re all going to go through that box,” he said. “It’s time for me to go through the box.”

Got a story tip or idea? Send to Isabel Hughes at ihughes@delawareonline.com. For all things breaking news, follow her on X at @izzihughes_