By Kate Raphael | Photographs by Kristian Thacker

This story was originally published in The New York Times on August 26, 2024.

Marie Cooper led her life according to her Christian faith. She baked pies for her neighbors in northern West Virginia, and said grace before even a bite of food. She watched Jimmy Swaggart, a televangelist preacher — a little too loudly, in her daughter Sherry Uphold’s opinion. And she always said that at the end of her life, she did not want to be resuscitated.

“My mother’s religious belief is when it is her time to go, that’s God’s choosing, not hers,” Ms. Uphold said. “She was very adamant about that.”

Last winter, doctors found cancer cells in her stomach. She’d had “do not resuscitate” and “do not intubate” orders on file for decades and had just filled out new copies, instructing medical staff to withhold measures to restart her heart if it stopped, and to never give her a breathing tube.

In February, Ms. Cooper walked into the hospital for a routine stomach scope to determine the severity of the cancer. After the procedure, Ms. Uphold visited her mother in the recovery room and saw her in a panic. Despite having an oxygen tube in her nose, Ms. Cooper was gesturing as if she could not breathe. She was able to force out just one word at a time.

Ms. Uphold called for help and was ushered to a waiting room while the medical team called an emergency code. Ms. Cooper grew even more distressed and “uncooperative,” according to medical records. Doctors restrained her and inserted a breathing tube down her throat, violating the wishes outlined in her medical chart.

Ms. Uphold, livid, confronted the doctors, who could not explain why Ms. Cooper had been intubated. When Ms. Cooper awoke, she tried to pull at the tubes and IV lines protruding from her body. She motioned to her daughter and the doctors that she desperately wanted her breathing tube removed. “They had me tied down,” Ms. Cooper said. “I was scared to death.” Ms. Uphold found herself in a situation she and her mother had always wanted to avoid.

“If you take that out, you’re committing suicide,” Ms. Uphold told her mother, “And if I take it out, I’m murdering you. I won’t do that.” Ms. Cooper nodded and squeezed her daughter’s hand to show she understood.

 

They left the breathing tube in place, and Ms. Cooper developed pneumonia and went into septic shock. Days later, Ms. Cooper stabilized enough for the doctors to remove the tube and allow her to go home on hospice care. The severe sickness and intubation left her weak, with limited mobility. She needs round-the-clock care, and she is unable to bathe, dress or cook for herself. Most nights, she wakes up screaming, flailing her arms and grasping for imaginary tubes. “I could just feel the tubes all over in my throat, just like they were really still in there,” said Ms. Cooper, now 81. “I’d rather be dead than live like this.”

On its face, a D.N.R. order is a straightforward medical document, which states that if a patient’s heart stops (and, in some states, if breathing stops), medical staff should not perform CPR or the resuscitative measures that can accompany it, including ventilation, intubation, defibrillation (shocking the heart), or giving specific medications, like epinephrine, that can help restart the heart. Yet as Ms. Cooper found, confusion often surrounds D.N.R.s, which are interpreted differently across medical settings, leaving doctors unsure about what’s required of them and patients unsure whether their wishes will be upheld.

A ‘Heroic Measure’ He Wouldn’t Have Wanted

Older adults represent the majority of patients with D.N.R. orders, typically written for people with severe underlying medical conditions, though young and healthy people also request them. Some research suggests that between 10 and 20 percent of hospitalized adults have D.N.R.s. Those older than 85 are up to four times as likely to have a D.N.R. as adults under 65.

For many patients who are sick or frail, attempts at resuscitation may not save them. Even if CPR restarts the heart and breathing, it can cause irreparable harm, an outcome many aging adults fear. Chest compressions have the potential to break the sternum and ribs and can puncture lungs, prolonging pain and recovery.

Despite the positive depictions of CPR in televised medical dramas, it often fails to meaningfully extend life, especially for older people in frail bodies. Between 12 and 29 percent of older patients who undergo resuscitation after cardiac arrest in the hospital survive to discharge, according to a 2021 literature review of studies conducted globally, including in the United States. The review’s authors found that for those who had cardiac arrest out of the hospital, less than 11 percent survived. Even when people do survive, they often have brain damage.

Decades before Cliff Robson’s health declined, he knew he didn’t want to be resuscitated. A retired electric motor repairman in Poynette, Wis., Mr. Robson had an active life — gardening, playing cards with friends, plowing through books at the local library. He explained to his son, Craig Robson, that he didn’t want to prolong his life if the quality was low.

By 71, Cliff’s health had deteriorated because of congestive heart failure. While in the hospital preparing for a valve replacement, his vital signs worsened. His son waited in another room, and when someone called a code blue, his heart dropped — he knew it was for his dad. Minutes later, a nurse led Craig into a lounge to tell him the team had performed CPR on his father and restarted his heart. “Whoa, hold on,” he remembers saying. “He didn’t want that.”

The medical team seemed not to have known about Cliff’s D.N.R. Though they had stabilized his heartbeat, he had sustained multiple broken ribs and hadn’t regained consciousness. A brain scan revealed minimal activity. Craig stood by his father’s hospital bed and thought he saw Cliff shaking his head no. “He’s just telling me that he didn’t want this to be like this,” Craig said.

Craig had to decide whether or not his father should receive a feeding tube, a “heroic measure” he wouldn’t have wanted. He withheld the tube and moved his father to hospice, where he slowly slipped toward death. Craig visited his dad each day after work, but he never woke up. “We had people come down to see him, but he didn’t realize anybody was there,” Craig said. “There was nothing we could do.” More than a week later, he answered an early call from the hospice facility: His dad had died.

When Medical Staff Doesn’t Understand What a D.N.R. Calls For

In the 1960s, “resuscitation” referred primarily to CPR, which consists of chest compressions sometimes combined with ventilation. This was considered the “nuclear option” to bring people back after their hearts had stopped, said Dr. Max Vergo, a palliative care doctor for Dartmouth Health in New Hampshire.

By the 1990s, medical literature was using the term “resuscitation” as a catchall to include other medical interventions — such as administering intravenous fluids or giving high doses of steroids to treat serious infections — that would be used in instances that don’t involve cardiac arrest. The scope of a standard D.N.R. did not change, but the liberal usage of “resuscitation” created confusion about what the word meant, Dr. Vergo said, leading doctors to interpret D.N.R.s by administering or withholding care differently, according to their own interpretations.

Because resuscitation lacks a clear definition, medical staff can misunderstand what patients want. Some research has shown that patients with D.N.R. orders may not receive lifesaving treatment even before cardiac arrest, and mortality rates are worse for D.N.R. patients, even when adjusted for disease severity. Interventions such as transfusions, antibiotics and dialysis are still permitted under an active D.N.R., but clinicians are sometimes confused about whether this care can be administered.

A 2017 survey of 553 residents in the United States found that a substantial portion would have made incorrect decisions to withhold necessary medical care for a D.N.R. patient: In one scenario, 41 percent said they would not transfer the patient to the intensive care unit and 62 percent would not have administered dialysis. Some doctors believe diagnostic tests should not be ordered for D.N.R. patients, even though these procedures are permitted under the order.

“Do not resuscitate does not mean do not treat,” said Mathew Pauley, a bioethicist at the Kaiser Permanente hospital system in California. Yet some clinicians still assume it does, he added, recalling a case he consulted on when nurses misinterpreted a D.N.R. patient’s plan of care. The nurses wanted to withhold use of a BiPAP machine, which provides breathing support through a face mask and is permitted under a D.N.R.

On the other hand, limited research shows that doctors may knowingly override D.N.R.s in some cases. A 1999 survey of 285 physicians revealed that doctors were unlikely to override a D.N.R. when a patient went into cardiac arrest because of an underlying condition, but far more likely to perform CPR if the arrest was caused by a complication of treatment. In the case of physician error, 69 percent of the survey respondents said they would override the D.N.R. Some doctors have argued that cardiac arrest because of treatment is rarely foreseen by patients when they agree to a D.N.R., therefore patients should be resuscitated in these cases.

Sometimes physicians resuscitate patients with D.N.R.s because they aren’t aware the orders exist. Hard copies of D.N.R.s are easily misplaced, and information is lost during medical transitions. Regardless of the reason, bypassing longer conversations between doctors and patients can result in either too much or too little treatment, both discordant with patients’ wishes.

In an effort to reduce this discordance, many medical institutions are clarifying the language of “do not resuscitate.” Some hospitals use the phrase “do not attempt resuscitation” to emphasize that CPR often does not revive people. Mr. Pauley prefers the term “allow natural death” because it frames the choice as a positive one, rather than one of withholding care. Dr. Vergo supports the term “no CPR,” which is explicit in delineating what interventions doctors should avoid.

In April 2022, Celeste Salanitri, an 81-year-old woman with advanced Parkinson’s, lost consciousness in the bathroom of her assisted living facility in Plant City, Fla. The nursing staff members sprang into action: They called 911 and pulled her bright yellow D.N.R. from their files. When the ambulance arrived, the nurses handed over the document, which Ms. Salanitri’s doctor had signed just a week before.

But in the chaos of the care change, the paramedics performed CPR anyway. When Tiffany Tergesen, Ms. Salanitri’s cousin, arrived at the hospital, a doctor told her that Ms. Salanitri’s ribs were most likely broken and she probably wouldn’t wake up. “It would be better to just let her go,” Ms. Tergesen remembers the doctor saying.

Medical staff removed the tubes and wires from Ms. Salanitri’s body as her family gathered around to say their goodbyes. But Ms. Salanitri didn’t die that day. She gurgled and moaned as if she were in pain, but she breathed on her own.

For more than a week, Ms. Tergesen sat vigil. Ms. Salanitri’s body began to shut down. Black liquid dribbled from her mouth and sores developed on her back and rear. The room smelled acrid as her flesh began to decay. Finally, Ms. Salanitri died.

She had lived a vibrant life and treated Ms. Tergesen like a daughter, attending her first school play and even planning her wedding. Ms. Salanitri had not made the decision to request a D.N.R. lightly. “She knew exactly what she wanted,” Ms. Tergesen said. “It hurts that she didn’t get that.”

Confusion in the Operating Room

One Sunday last summer, Sara Frommer’s back pain was so severe, she called an ambulance, carrying a physical copy of her D.N.R. order aboard. Once at the hospital near her home in Bloomington, Ind., an X-ray showed that she had a spinal fracture and would need surgery to repair and reinforce the bones. Ms. Frommer, who is 86, told her surgeon she understood that typical hospital procedure meant suspending the D.N.R. during surgery. “I said, ‘I hate that, but I get it,’” Ms. Frommer recalled.

Still, she worried that CPR would break her fragile bones, already weak from osteoporosis. “I know what happens when they’re trying to resuscitate you by pounding on your chest, and that would leave me in really, really bad shape,” Ms. Frommer said.

Ms. Frommer’s surgeon did not have time for a longer discussion. She was prepped for surgery the next day, and her D.N.R. was suspended for the time she would be on the operating table, according to standard procedure. Though the surgery went smoothly, Ms. Frommer never knew there were other options.

“A lot of doctors have discomfort with what we call iatrogenic reactions,” complications that arise from medical interventions rather than underlying conditions, said Wendy Kohlhase, a bioethicist who consults at six California hospitals. Many doctors suspend D.N.R.s for surgery so that they have the freedom to correct these easily reversible problems when they arise in the operating room.

For example, an allergic reaction or a severe electrolyte imbalance can stop the heart, issues that can be fixed during surgery with medications and chest compressions that wouldn’t be allowed under a D.N.R. Anesthesia suppresses breathing, which could require the surgical team to intervene and take over respiration, usually by inserting a breathing tube, which is prohibited by a do not intubate order, said Dr. Jeffrey Jackson, an anesthesiologist at Indiana University Health.

Some hospital policies have exceptions that allow doctors to address some of these problems without suspending a D.N.R. But the language is not consistent, nor are the interpretations. Patients have a right to decide if they want a D.N.R. to remain active in the operating room, Dr. Kohlhase said, but doctors also have the right to say they’re not comfortable with that. That discussion does not always take place.

National databanks track surgical mortality, which can reflect poorly on hospitals and on individual surgeons, Dr. Vergo said. For both personal and professional reasons, surgeons may not want to operate on someone who could die a preventable death.

Today, Ms. Cooper still shakes with anxiety. Her family provides much of her care because they can’t afford full-time caregivers and Ms. Cooper hasn’t regained her trust of doctors. “They interfered with me and God,” she said. “I was ready to go, and they took that away from me.”

Her daughter, Ms. Uphold, has contacted dozens of lawyers in and out of West Virginia, but no one has taken the case. Most D.N.R. violations are difficult to litigate, whether or not the patient dies. Lawyers typically calculate medical malpractice suit damages through lost wages, but older adults usually don’t work, meaning that method of determining damages fails to account for their pain and suffering or death.

“It’s cheap to kill sick old people,” said Thaddeus Pope, a law professor and expert on end-of-life cases at Mitchell-Hamline School of Law in Minnesota, nor are there many legal consequences for keeping them alive against their will. That hasn’t stopped Ms. Uphold, who relentlessly pursues legal counsel despite the torrent of rejections. She is adamant that no one should endure what her family has.

Audio produced by Sarah Diamond.

Kate Raphael is a writer with the Investigative Reporting Program at the UC Berkeley Graduate School of Journalism. This story was developed in partnership with the 100Reporters nonprofit news organization and reported through a grant from the SCAN Foundation.