HELENA, Mont. — He checked into the hospital for a common procedure and collapsed while unattended, in cardiac arrest, in a hospital restroom, of all places.
What happened to him next, he came to believe, was even worse.
Rodney Knoepfle woke up. He was confused. His ribs hurt. Hours had passed that he could not recall, as if he had been frozen in time while the rest of the world had jumped ahead. Slowly he pieced it together. Staff at St. Peter’s Hospital had discovered him slumped against a bathroom wall. They had rung up a code blue — the alarms, the rolling crash cart, CPR compressions on Rodney’s chest, and an epinephrine shot to jolt his heart.
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They brought him back.
Digesting this news, Rodney, then 67, became profoundly offended and inconsolably angry.
The hospital had cheated him, he felt, out of a natural death. The staff had not followed the instructions in his medical file labeled Do Not Resuscitate, a widely accepted medical directive, known as a DNR order. It is for patients who choose to forgo heroic medical interventions, such as CPR, at the end of their lives. Thousands of Americans have similar orders, which instruct doctors when patients no longer can speak for themselves.
Rodney had entered St. Peter’s for a cardioversion, a brief procedure to zap his misfiring heart back on the correct rhythm. This was not really about extending his life. He hoped the treatment, in March 2016, would reduce the agonizing symptoms of his advanced heart disease: the dramatic fluid retention, the irregular heartbeat, the weakness, the shortness of breath.
Rodney’s medical chart read like something out of the Book of Job — a history of back surgeries, neck surgeries, a debilitating childhood bone infection, three hip replacements, heart failure, open heart surgeries, valve replacements.
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He felt he had suffered 10 lifetimes worth of pain.
And that was enough. He made it clear that if his sickly heart happened to give out, under no circumstances did he want to be revived.
Snatched back from death against his wishes, Rodney fumed. Had the hospital just let him be, he’d be “in peace right now instead of going through this [expletive] again.” He went home but never got over what happened.
He hired a law firm to sue the hospital and a doctor who helped revive him, alleging they had wrongfully prolonged his life. Rodney made his wife, Cheryl O’Donnell, promise to see the case through if he died before it resolved.
At first Cheryl thought he was nuts. To sue for being saved? But she made the promise and kept it, in a case that would break ground in the evolving issue of “end-of-life liberty.”
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For many years it was hard to even file a “wrongful prolongation of life” lawsuit. Most tort lawyers thought these cases were un-winnable or, even if they won, the potential damages awarded by jurors would be too low to justify the effort. Malpractice torts compensate people who suffered harm, such as lost wages. It was a hard argument to make that medical attention prolonging your life could be considered a form of harm.
But over roughly the past decade, this thinking has shifted, as Americans put more emphasis on gaining and asserting legal power to control their final days. Americans have been thinking and talking a lot about what makes a good death in the face of a terminal illness: How much aggressive medical treatment at the end of life may be too much?
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Rodney’s case may be extreme, but it highlights how intensely many Americans feel about these rights, and the powerful message — and responsibilities — embodied in end-of-life directives. It also is a reminder about how uneven progress has been on these issues, a topic examined in the Globe Spotlight Team’s series, Last Words. Getting the comfort care you want, and avoiding the treatment you don’t want, can depend on the priorities and responsiveness of your health care provider.
One of the most emotionally charged parts of the Affordable Care Act proposed paying doctors through Medicare to have these sorts of difficult conversations — to talk about a patient’s goals and personal values, and use those conversations to shape treatment plans, including DNR orders for those who might want them. Opponents of the legislation likened the measure to “death panels” that would deny pricey treatment to the infirm, and the proposal was cut from the original bill.
The Centers for Medicare & Medicaid Services put the payment measure into effect in 2016, without much fanfare, through a regulation change, but these doctor-patient discussions are still not routine. A 2018 survey by the Massachusetts Coalition for Serious Illness Care found that just 13 percent of Massachusetts adults report having a conversation with their doctor about the kind of end-of-life care they wanted. Even among Massachusetts adults with a “serious health condition,” the numbers were not much higher: Just over one in four reported having such a conversation with their doctor.
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Some of these profound decisions are apparently being made outside the doctor-patient relationship: About 37 percent of US adults have completed some form of advance health care directive, according to a 2017 study in the journal Health Affairs. How often those directives are not followed is hard to quantify.
The Coalition for Serious Illness Care asked Massachusetts adults who had recently lost a loved one, “To what extent would you say that your loved one’s wishes were followed and honored by health care providers at the end of their life?” Most said the wishes were honored, but 15 percent of respondents said the wishes were only honored “some”; 7 percent said “a little”; and 7 percent, “not at all.”
Over about the past decade, state and federal health regulators have cited about a dozen Massachusetts hospitals for violations related to a patient’s documented care wishes, such as failing to properly invoke a patient’s health care proxy in medical decisions.
Part of the problem may be that the topic of death is just so hard to talk about, for both the patient and the doctor. “One of the things we hear really commonly is that people just don’t have a good understanding of what the road ahead looks like when they’re very sick,” said Anna Gosline, the coalition’s director. “And so when you don’t have a really good understanding of what your prognosis is and what’s going to happen to you, it’s really difficult to know what to do or not do. You can see how that would lead to thinking you either had too much [care] or not enough.”
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Still, many ordinary Americans, including in Massachusetts, are pushing these uncomfortable topics.
States have engaged in noisy public debates over hot button end-of-life issues, such as medical aid-in-dying, a program that permits certain terminally ill people to get a prescription for lethal drugs to hasten their own deaths. Now it is common for people to say, “Hey, we have a right as Americans to control the timing and the manner of our own death,” said Thaddeus Pope, a professor at Mitchell Hamline School of Law in Minnesota and a specialist on end-of-life legal matters.
The underlying legal principles didn’t really change, but the concept of self-determination has become “deeper, more ingrained,” he said, and the legal environment supporting “end-of-life liberty” has grown friendlier for patients.
Access to medical aid-in-dying programs is not even across the country. Nine states and the District of Columbia permit certain terminally ill patients to seek a doctor’s prescription for a lethal drug cocktail to hasten their own deaths. Massachusetts voters in 2012 narrowly rejected a medical aid-in-dying referendum, but advocates have continued to push the concept in the state Legislature. A bill to legalize the practice is pending at the State House; the bill’s supporters are hopeful lawmakers will schedule a vote before the end of the legislative session in January.
The legal push for more end-of-life liberty has advanced to the point that it is now bumping up against the next frontier in the law — the “dementia directive.”
Dementia patients cannot participate in medical aid-in-dying programs, which require that patients be both terminally ill and mentally sound. By the time a dementia patient is terminally ill, they no longer have decision-making ability, Pope said.
In response to the rule, sound-minded people who cannot imagine living as dementia patients have begun signing documents stating that if or when they develop advanced dementia, they want caretakers not to hand-feed them food and water, and to permit them to die.
The advocate group End of Life Choices New York, for instance, offers on its website a dementia directive template that has been downloaded hundreds of times, said Judith Schwarz, the group’s clinical director.
Schwarz explained: “In our directive, it says when you reach the terminal stage, or an advanced stage of dementia, when you can no longer make informed decisions for yourself and … when you reach that point of not being able to feed yourself, you want all oral intake withheld in addition to all other life-prolonging measures, of course, like CPR and dialysis. And you want aggressive comfort care” to ease pain and other symptoms.
In essence, sound-minded people in the present are signing documents directing the deaths of their future selves, who may no longer have the capacity to make that choice.
Whether the documents are enforceable or even legal is an open question. The concept is so new that a precedent-setting case has not come before a judge, Schwarz said, though that is likely just a matter of time.
Some key court decisions in recent years have recognized the sanctity of a patient’s end-of-life wishes, including when a patient assigns health care decisions to a loved one.
In one important case, the Georgia Supreme Court affirmed in 2016 that a hospital did not have immunity from lawsuits for failing to comply with a care directive, after a physician ordered that a 91-year-old patient be put on a ventilator against the direction of the patient’s granddaughter, who was legally empowered to make all of the patient’s health care decisions.
The granddaughter, Jacqueline Alicea, was surprised and angry to discover her grandmother on a ventilator, she said in a Globe interview. She believed the technology to be prolonging her grandmother’s suffering. She could have immediately ordered the tube removed, but that likely would have led directly to her grandmother’s death. She argued there is a big difference between forgoing medical intervention to allow a natural death, and forcing a relative like her to make an overt decision that kills the patient. Alicea’s grandmother lived about another 10 days. Alicea sued. The case was ultimately settled out of court.
“There’s this core question in all these sorts of cases,” Pope said, “which is fundamentally the patient saying, ‘I would rather be dead than live in this compromised state.’”
In other words, the patients and the courts are saying that life, in some extreme cases, can be a harm.
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Cheryl O’Donnell thought Rodney Knoepfle was a damn fine looking man. He was always dressed in cowboy boots and a cowboy hat. He liked playing cards and bowling. She knew him and his former wife from around the pubs of Deer Lodge, Mont., a little town where there is not a whole lot to do outside of the pubs.
They started dating after Rodney’s marriage broke up. He was 11 years older, but gentle and fun and quick with a funny comeback. They liked four-wheeling together, working in the yard, shooting gophers, traveling to see family and friends. They moved to Helena, where she was the office manager for the iron workers union, and Rodney worked as an aide on a school bus.
“We had just wonderful times together,” says Cheryl, now 59, looking back on their full 20 years together, in an interview at the home she shared with Rodney in Montana. “It seems like it’s so hard to find those good times when the last years were so crappy.”
After the hospital brought Rodney back, he eventually went back home with Cheryl to their house on a dirt road with grand views of gray mountains, a few minutes outside downtown Helena.
Rodney was already blind in one eye from a stroke he had suffered around 2008. He had walked with a limp almost his whole life after falling from the monkey bars as a child and damaging his hip, which led to a bone infection.
After his resuscitation, he was leashed 24/7 to a 50-foot oxygen tube, connected to a buzzing machine in the hall closet. He could not stray more than 50 feet from that closet, except when Cheryl switched the machine for portable oxygen tanks.
Rodney needed a wheelchair or a walker to get around. He got confused sometimes, and once turned on the gas stove without any recollection of doing so. He needed powerful drugs to dull constant pain. His mornings began with violent retching.
“Sometimes he’d upchuck something, sometimes that was just dry-heaving,” Cheryl said. “He’d hardly get out of bed, it hurt so bad. His belly hurting; he couldn’t hardly eat. He’d eat a tablespoon and say he was full.”
Rodney couldn’t hunt deer and elk anymore, or fly fish for trout and walleye. He couldn’t camp and boat at Gates of the Mountains, his beloved Montana wilderness area. Rodney was an outdoorsman trapped inside, feeling like a prisoner of his own house and a failing body.
Cheryl didn’t like it when Rodney arranged a Do Not Resuscitate order in 2014, before one of his heart surgeries. “But after seeing all the stuff he went through, I accepted it,” she said. “It’s not my life to live. I mean, to see him like that? I wouldn’t want to be like that.”
Rodney lived two more years after the hospital revived him. He died at home in March 2018, at 69.
Cheryl kept her promise and saw his lawsuit through.
The hospital acknowledged the mistake and claimed that reviving Rodney was just an oversight by staff caught up in the moment. “St. Peter’s Health admitted liability as a defendant in this medical malpractice trial, and we wish to extend our deepest apologies again to the family of Mr. Knoepfle,” the hospital said last week in a statement. “St. Peter’s Health is committed to engaging all of our staff and providers in continually improving every aspect of the care we provide our patients.”
In May 2019, a jury in Helena found the hospital was in the wrong for saving a man who didn’t want to be saved. They awarded his estate $409,000. Though the case got almost no national attention, it appears to have been the first jury verdict for the plaintiff in a wrongful prolongation of life suit in the United States, according to several legal experts.
“Rod’s lawyers said he was going to make history,” Cheryl said. The hospital “brought him added pain and suffering; that’s what the whole lawsuit came down to. He needed to make a statement.”
Tips to the Spotlight Team can be sent to spotlight@globe.com.
Mark Arsenault can be reached at mark.arsenault@globe.com. Follow him @bostonglobemark.