Three weeks after his heart transplant, Andrey Jurtschenko still had not woken up.
A towering figure at 6 feet, 3 inches, with salt-and-pepper hair and matching mustache, Jurtschenko — known to one and all as Andy — delighted friends and family with his seemingly endless supply of wisecracks and goofball humor. On April 5, 2018, he went into surgery at Newark Beth Israel Medical Center in Newark, New Jersey, for a new heart and what he hoped would be renewed energy. He dreamed of returning to his carpet business and to enjoying New York Mets games on the weekends after years of exhaustion and strain caused by congestive heart failure.
Typically, patients begin reviving within 24 hours after transplant surgery. Andy didn’t. As the days passed, his children, Chris and Megan Jurtschenko, became increasingly concerned. On April 26, a neurologist called Chris and explained what an MRI the day before had shown: Andy’s brain had likely been deprived of oxygen during the procedure. The doctor said he “would basically be in a vegetative state,” Chris recalled in an interview. Chris asked to meet with the medical team the next day.
The devastated family took some comfort in knowing what Andy would have wanted. In several conversations before the surgery, he had made clear that “he did not want to be a burden on us, he did not want to live in an incapacitated form,” Andy’s older sister, Anna DeMarinis, said.
Now that their father could not speak for himself, Chris and Megan, as Andy’s next of kin, had to be his voice. On April 27, they went to the hospital for the meeting. Still hoping Andy might recover, they did not seek to withdraw his feeding tube or medications. But they asked for a do not resuscitate order. If he were to stop breathing or have no pulse, a DNR order would direct doctors not to compress his chest, use a machine to force air into his lungs or give electric shocks to restart his heart.
If his heart stopped, “we weren’t going to force him to stay,” Megan said.
Dr. Margarita Camacho, the surgeon who had performed the transplant, deflected their request, the siblings said. She told them that it was too early for a DNR, and that they shouldn’t give up hope because their father might recover, his children said. At Camacho’s urging, Megan and Chris said, they let it go. No DNR order was signed that day. The family would continue to press the issue and finally secure a DNR more than a month later.
Megan and Chris Jurtschenko waived their privacy rights to allow the hospital to discuss their father’s case with ProPublica. Asked directly about the meeting with the surgeon and why the family’s wishes were not followed at the time, Linda Kamateh, a spokeswoman for Newark Beth Israel and Camacho said in an email: “Physicians are obliged to give their best medical advice based on a patient’s medical condition. However, ultimately the decision to have a DNR resides with the patient. The hospital believes that it adhered to those principles in its discussions with the Jurtschenko family.”
Except for “a very specific set of dire medical circumstances, in which a patient may require resuscitation,” a DNR “does not otherwise affect ongoing care and treatment,” Kamateh wrote in a separate email. “… These decisions are often revisited and reassessed within the course of treatment.”
Andy’s medical record doesn’t mention the children’s request for a DNR. “The family was able to express their concerns and decided to continue to see how PT [patient] progresses over the next few weeks,” a social worker wrote.
Bearing out Camacho’s prognosis, Andy would awaken and recover some cognitive ability — but only enough to attain the incapacitated state he had dreaded, not to become again the man that his children knew and loved. They remained adamant that, if his heart stopped, he would have preferred to die than to be resuscitated for such an existence.
The American Medical Association’s code of medical ethics states, “The ethical obligation to respect patient autonomy and self-determination requires that the physician respect decisions to refuse care.” Yet Newark Beth Israel’s transplant team was often reluctant to sign DNR orders, according to four former employees and an audio recording of a staff meeting. While the team wouldn’t outright refuse, especially when patients or their family members repeatedly asked, it often delayed or discouraged DNRs, especially before key dates tied to performance metrics such as the one-year survival rate, or the proportion of people undergoing transplants who are still alive a year after their operations, three of the ex-employees said.
The team also lacked a process for discussing beforehand whether patients would want CPR if their pulse or breathing stopped after their operations, the former employees said. Typically, the staff addressed the issue only if a patient’s condition became critical and family members were insisting on a DNR.
Newark Beth Israel’s DNR policies are consistent with best practices, Kamateh said. “These policies guide our clinical teams in support of the treatment decisions of our patients and their families, from the most routine procedures to the most complex and stressful situations,” she said. “We strive to explain care options and deliver sound medical advice in ways that are timely and clear, yet also respectful and sensitive.”
At least indirectly, the concern about DNRs may have stemmed from Newark Beth Israel’s aggressive approach to transplants. Newark Beth Israel’s heart transplant program is one of the top 20 in the U.S. by volume, having grown under Dr. Mark Zucker, its director for three decades, and Camacho, the main surgeon. As of November, the hospital had performed 1,096 heart transplants.
The program is known for taking on sicker patients who might be rejected at other programs. From 2014 through 2017, compared with its counterparts in New Jersey and nearby states, Newark Beth Israel’s transplant team operated on a higher percentage of patients who were older, more overweight or obese, and who had been in an intensive care unit while awaiting transplant, according to the Scientific Registry of Transplant Recipients. (The registry is funded by the U.S. Department of Health and Human Services to track and analyze transplant outcomes.) In those years, Newark Beth Israel also had a higher percentage of patients who had been on a pump or some other support before transplant, which increases the difficulty of surgery. This stance filled an important gap in care and helped the program grow both in size and revenue; hospitals typically bill insurers about $1.4 million for a heart transplant.
“While the Advanced Heart Failure Treatment and Transplant Program at NBI does not seek out cases that are more complex than those handled by other prestigious transplant programs, patients from other programs have been referred to our care and been successfully transplanted,” Kamateh said. “Our clinical decisions are driven by the best interest of our patients, including their personal preferences, not by statistical results.”
Scores of grateful patients say they owe their lives to Zucker and Camacho.
“Dr. Zucker has saved my life again and again,” said Mark Reagan, a retired AIG executive in Bluffton, South Carolina. Reagan received his heart transplant at Newark Beth Israel in March 2003 after suffering from congestive heart failure for eight years. Reagan said his arteries were initially too narrow for a transplant, but Zucker opened his arteries with an experimental treatment so he could get onto the waitlist. After his surgery, Reagan became part of the “Hearty Hearts” volunteers at the hospital who advocate for organ donations and lift the spirits of other transplant recipients. Through “Hearty Hearts,” he said, he has met several transplant candidates who were turned away by other hospitals but “walked out of Newark Beth Israel with a new heart, because of Mark.”
Accepting more difficult cases, though, can raise the risk of adverse outcomes. According to former employees and audio recordings of staff meetings, Newark Beth Israel’s transplant team worriedc about its one-year survival rate, which would drop below the national average in 2019. That anxiety, the employees said, appeared to underlie the team’s unwillingness to sign DNR orders, since resuscitation might be needed to keep a patient alive.
Besides Andy Jurtschenko’s children, two former NBI employees, including one with firsthand knowledge, said that the transplant team initially balked at a DNR order for him. By ruling out extreme measures to revive him, a DNR could conceivably have hastened Andy’s death and lowered the program’s one-year survival rate. Whether or how much metrics influenced Camacho’s rebuff of the DNR request is unclear. While DNR orders are documented in the medical record, unapproved requests — and the reasons behind those decisions — generally aren’t.
There can be few greater points of contention between physicians and families, few so infused with emotion and anguish on both sides, than whether to resuscitate someone on the verge of death. Hospitals have been sued and nursing homes fined for resuscitating patients who had a DNR order on file. Or families may urge a medical team to initiate resuscitation that a physician believes is futile, or even torture, for a patient with a terminal diagnosis. The decision is inherently subjective, and ultimately, doctors are supposed to respect the wishes of patients — or, if they can’t speak for themselves, their health care proxy.
A heart transplant itself is an act of resuscitation; there is a moment, after the old heart has been removed and the new organ not yet implanted, when the patient is only kept alive by a machine. If a surgery goes badly and a patient suffers serious complications, a request for a DNR can become a flashpoint, revealing the pressures that transplant teams are under to save patients, make sure that scarce donated organs don’t go to waste and meet performance metrics.
More so than almost any other field of medicine, organ transplantation in the United States is tightly regulated. The U.S. Centers for Medicare and Medicaid Services can halt reimbursement if they find a program falling short of their standards. Transplant programs in the U.S. are constantly aware of the importance of keeping their survival rates at or above national medians, said a heart transplant surgeon at another hospital in the Northeast. “We are only judged on the numbers, on the results,” said the surgeon, who requested anonymity to avoid jeopardizing future job opportunities. “My main job is to treat percentages, not patients.”
In that context, medical staff can be reluctant to relinquish the option of resuscitation. “The 365-day problem is real, and if you gave truth serum to every transplant doctor in America, including me, and you asked if we didn’t all keep an eye on it, and if we said we didn’t, that would be a lie,” said Dr. David Weill, a consultant to transplant programs and former director of the heart-lung transplant program at Stanford University Medical Center. As the one-year anniversary approaches, Weill added, he’s seen doctors tell patients, “‘It’s too early [for a DNR], I’ve seen people recover, she has a strong will to live,’ these kind of things.”
Such attitudes extend beyond transplant wards to other types of cardiovascular surgery that judge success by survival metrics, though their key target is typically 30 days, not a year. An acute care nurse practitioner with more than two decades of experience in open-heart surgery care told ProPublica she’s worked in several cardiac wards where families were discouraged from withdrawing life support or asking for a DNR before 30 days had elapsed.
“Families are lied to, they’ll be told, ‘It’s too soon,’ then after 30 days, doctors will say, ‘Make them a DNR, go ahead,’” said the nurse, who requested anonymity because she feared retaliation from her employer. (She hasn’t worked at Newark Beth Israel.) “Unless you have a medical directive and, if you’re unable to speak for yourself, a relative with power of attorney, the hospital’s driving the bus.”
Metrics aren’t the only reason that surgeons balk at DNR requests. They are trained to do everything they can to save lives. When a patient dies, while other doctors might blame a treatment protocol or the deceased’s lifestyle, surgeons often feel personally responsible, according to Dr. Gretchen Schwarze, associate professor of vascular surgery at the University of Wisconsin School of Medicine and Public Health. In a 2010 study, Schwarze posed hypothetical scenarios to 10 surgeons, including a transplant specialist. One scenario described a patient who remained intubated and on a feeding tube a week after surgery. A family member then produces a previously undisclosed directive from the patient, asking not to be sustained by life support.
The surgeons “expressed significant emotional reaction,” including “betrayal, unhappiness, disappointment,” Schwarze reported. They felt that there was an implicit contract that patients entered into when signing up for surgery. One surgeon put it this way: “There is a commitment made by both the patient and the surgeon to get through the operation, as well as all of the post-operative issues that come up.” While acknowledging that they were being “paternalistic” and contradicting the patient’s directives, several of the surgeons in the study said they would refuse to withdraw life support in Schwarze’s scenario.
One reason for conflicts over DNRs is that most patients aren’t asked ahead of time about their desires for post-operative care. A 2010 study of admissions at two U.S. hospitals found that only one-third of seriously ill patients were asked what code status they wanted if they went into cardiac or respiratory arrest, and those conversations on average lasted one minute.
“We tend to wait too long to have a meaningful conversation. We wait until someone’s been in the ICU for a while, until the point that the patient cannot participate in the conversation,” said Luke Adams, a critical care nurse in Pennsylvania who founded a company called Advanced Care Solutions, which helps people write advance directives and navigate end-of-life decisions.
During a heart transplant operation, a patient cannot have a DNR order in place. The new heart may need to be shocked or stimulated with chest compressions to help it function properly. These actions would be considered “resuscitation.”
After surgery, however, a patient should be able to ask for a DNR order at any time, and in the case of patients who can’t speak for themselves, the request can come from a surrogate, usually the closest relative. A DNR order must be signed by a physician and put in the medical record. In New Jersey, DNR orders are typically entered as part of a form called a POLST, short for Practitioner Orders for Life-Sustaining Treatment, which also includes sections for other medical directives, including whether to use artificial nutrition and antibiotics.
Resuscitation is no assurance of either immediate or long-term improvement. A 2003 study of in-hospital resuscitation tracked 14,720 cardiac arrests and found that 44% of patients regained circulation, but only 17% recovered enough to be discharged from the hospital.
Sometimes a DNR order is the obvious choice, said Dr. Perla Macip-Rodriguez, assistant professor of internal medicine at the Boston University School of Medicine, who specializes in palliative care and geriatrics. She gave the example of a patient with late-stage cancer that is no longer treatable. If the patient’s heart stopped, CPR would not affect the terminal diagnosis. “It’s just going to prolong their dying process.”
Other cases are murkier. Andy Jurtschenko’s brain was severely damaged. If his heart stopped and he was resuscitated, nobody could know what the outcome would be.
When the prognosis is uncertain, the medical team should focus on the patient’s individual goals, said Dr. Jessica Zitter, an internist at Highland Hospital in Oakland, California, who practices both critical care and palliative care. “We should never, ever force treatment on a patient or their surrogate,” she said. “There’s no way you can ever insist on someone remaining on a machine or being resuscitated so long as the family has the patient’s best interest in mind. That’s called autonomy.”
Megan Jurtschenko’s fondest childhood memories involve visiting her father’s carpet store, climbing on the stacks of samples and running her fingers over soft rugs while listening to him bantering and laughing with his clients.
The U.S.-born son of Eastern European immigrants, Andy Jurtschenko worked his way up through local furniture chains until he was able to open his own store, Route 46 Carpet, in West Paterson, New Jersey. His gift for patter made him a natural salesman. Divorced, he stayed close to his children. On his Facebook page, he described himself as “a caring American.”
But in 2012, Andy began to feel tired and short of breath. Doctors diagnosed him with congestive heart failure. By 2014, as his heart became weaker, Andy had to stop working and go on disability. He was 57 years old. It frustrated him to rely on the government for financial support.
“All he ever wanted was to care for himself and his family. Losing that was not easy for him,” Megan said.
Megan and Chris knew Andy would not want to be kept alive by extraordinary means. Just surviving wasn’t his goal. His children wanted his caregivers to understand this as well.
On May 21, Andy was transferred from Newark Beth Israel to a rehab facility, JFK Johnson Rehabilitation Institute. Within a few days, a staff member of the facility called, asking for medical directives.
“They described him as very high risk for code, and they wanted to establish what we wanted,” Megan recalled. If his heart were to stop, she instructed them, “they would not do any chest compressions, no electric shock. And if his lungs stopped functioning they would not put in a breathing tube. We wanted no artificial care.”
Chris noted the difference between the rehab facility and the hospital. JFK “came to us and said we need to put this in place, where Newark kind of avoided it,” he said.
Hackensack Meridian Health, a New Jersey network that includes JFK Johnson, “has comprehensive DNR policies that we consider an essential part of providing high-quality patient care,” spokeswoman Mary Jo Layton said in an email. “Our teams work collaboratively with patients, their families and loved ones to ensure our patients’ wishes are honored.”
In September 2018, five months after Andy’s surgery, another Newark Beth Israel patient, Darryl Young, suffered brain damage during a heart transplant. As ProPublica has reported, Zucker instructed his staff to keep Young alive and not to discuss palliative care options, such as hospice, with his family until the one-year anniversary of his surgery.
If Young were to die, the hospital’s annual one-year survival rate, already at its lowest in a decade, would drop even further. In a previously unreported audio recording obtained by ProPublica, Zucker told his staff at a meeting in April 2019, “You can send him back to a rehab facility, but if you make him DNR at the rehab facility — they will make him DNR — it’ll be a problem for us.”
Zucker continued, “So, I don’t really know what to do except to tell you that I recognize what I’m asking, I said myself I’m not sure that this is ethical, moral or right, but for the global good of the future transplant recipients, the others who come along, this program can’t be put into an SIA.”
SIA stands for systems improvement agreement, a process through which CMS can force a transplant program to get back into compliance. It typically costs a hospital at least $2 million. After the April meeting, Zucker’s team never released Young to a rehab center, and he remains at the hospital. Young’s sister, Andrea, did not request a DNR, and the team only discussed the option with her after ProPublica’s article was published, she said.
The Centers for Medicare and Medicaid Services, the FBI, the New Jersey Department of Health and the State Board of Medical Examiners are investigating the hospital’s treatment of Young. The hospital has placed Zucker on leave pending the results of its own review.
Newark Beth Israel and Zucker did not respond to questions about his comments regarding a DNR for Young.
On June 1, 2018, Megan Jurtschenko went to visit her father at the rehab facility, but his room was empty. After being transported to Newark Beth Israel the previous day for a checkup, he hadn’t returned to JFK Johnson.
Panicked, Megan grabbed an Uber to the hospital. There, she raced to the fourth floor, sneakers pounding against the floor as she beelined for the cardiology unit. By that point, Andy had regained consciousness and could sometimes nod yes or no, but he easily became agitated, according to his children. Andy’s medical record from that day described him as “non-verbal.”
Megan went to her father’s room first “to let him know that he wasn’t alone” and then to the nurse’s station, where two physicians met her. She said they told her that her father had a fever when he arrived for his checkup, so they kept him overnight and started a course of antibiotics. The hospital suspected pneumonia, according to his medical record.
Nobody at the hospital had called Megan, Chris or anyone else in the family to let them know that Andy was being admitted or treated, his children said. A few days later, a handwritten note in Andy’s medical record said that the family was “upset” that they weren’t informed.
Megan said she turned to a nurse to ask, “What’s his code status?”
“Oh don’t worry, he is at full code,” the nurse responded, meaning that if Andy stopped breathing or his heart stopped, they would do everything possible to resuscitate him.
Her words riveted Megan to the floor.
“I said, ‘Oh, no, that is the complete opposite of what we want.’”
Newark Beth Israel didn’t respond to questions about this incident.
Andy needed to stay in the hospital until his infection cleared. That Friday, Megan refused to leave the hospital until she got a DNR order, so a cardiologist signed one. “Extensive discussion with daughter — Patient is DNR,” a note in the medical record states. The family scheduled a formal meeting to discuss the order on the following Monday with a palliative care nurse practitioner and Zucker, the transplant program’s director.
Chris was out of town, so Megan and her aunt, Anna DeMarinis, attended the meeting. Megan reminded Zucker that her father’s goals for the transplant had been to resume his normal life, she said. She reiterated that the family wasn’t asking to withdraw his feeding tube or medications. They just didn’t want Andy to endure what they saw as extraordinary measures.
As Camacho had, Zucker urged caution. “He looked at me and said: ‘You know, this is a very serious document. It’s very extreme. Are you sure you want to do this?’” Megan recalled.
She wondered if Zucker was appealing to her emotions. “I got the impression he thought I was going to be the one who was going to say, ‘No, I don’t want to lose my Dad, let’s keep trying!’”
Megan wasn’t swayed. “I could see what was actually happening, which is — he was suffering and that’s the only thing I saw.” The palliative care nurse at the meeting revised and signed Andy’s POLST form, indicating that Andy would continue full medical treatment unless he stopped breathing or had no pulse. In the CPR section, she checked the box for “Do not attempt resuscitation.”
Even then, Zucker wouldn’t let it go. After returning from his trip, Chris was sitting by his father’s bedside when Zucker came by. Unprompted, Zucker brought up the DNR.
“He said, ‘So, you’re giving up on him.’” Chris recalled.
Chris didn’t respond. “I was shocked, for a doctor to throw that in my face,” he said.
Newark Beth Israel and Zucker did not respond to questions about the meeting with Megan or Zucker’s conversation with Chris. “Mr. Jurtschenko’s medical record confirms that his family’s decision to implement a DNR in June rather than in April did not change his outcome,” Kamateh said.
Andy Jurtschenko eventually returned to JFK Johnson. Over the next few months, during which he was moved to a different long-term care facility, Andy’s condition improved modestly, until he was able to track people with his eyes and have short conversations.
But his gains soon plateaued. He was never able to stand, sit or eat on his own. He started hallucinating, seeing people who weren’t there. Over time, his hands began to atrophy and curl in on themselves, despite attempts at physical therapy.
Andy’s family members took turns visiting, making sure he had company nearly every day. Sitting by his side, they tried to engage him by flipping through photo albums, playing music from his favorite band, AC/DC, and watching sports on TV. They ached to see his misery. The spark in her younger brother’s eyes was gone, DeMarinis said. Holding back tears, she said, “When he did become cogent, he just kept reiterating what we already knew — he was suffering. He was suffering terribly.”
On the morning of Oct. 31, 2018, the rehab facility phoned Chris. Andy had died at sunrise. When his heart stopped, and his breathing faded, there was no attempt to resuscitate him.
Claire Perlman and Sophie Chou contributed research and analysis to this article.
Propublica originally published this story here.