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| Carlo Giambarresi, special to ProPublica |
by Caroline Chen
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.
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| A banner at Newark Beth Israel touts the hospital’s heart transplant program. (Jonno Rattman for ProPublica) |
“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 worried
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.
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| Newark Beth Israel’s heart transplant program is one of the top 20 in the nation by volume. Andy Jurtschenko, who received a heart there, hoped it would allow him to go back to work at his carpet business. (Jonno Rattman for ProPublica) |
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 practitioner 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.
Full Article & Source:
The Family Wanted a Do Not Resuscitate Order. The Doctors Didn’t.
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