Alyssa Gilderhus, 18 and a senior in high school, had been a
patient at Mayo for about two months, ever since having a ruptured brain
aneurysm on Christmas Day.
Mayo neurosurgeons saved her life, but she and her parents
were unhappy with the care she was receiving in the rehabilitation unit, and
they say they repeatedly asked for her to be transferred. But they say Mayo refused to let her transfer to another
hospital, even after a lawyer wrote a letter asking Mayo to make the
arrangements.
Alyssa and her family began to suspect that Mayo was trying
to get a guardian appointed to make medical decisions for her. They were right:
Hospital staffers would later tell police that they had gone to two county
adult protection agencies to make guardianship arrangements.
Duane and his wife, Amber Engebretson, weren't sure how to
get their daughter out of Mayo. Two nurses had been assigned to watch over her
at all times.
But on February 28, 2017, an idea struck Duane as he sat in
Alyssa's hospital room…
As he approaches the car, the front passenger door opens.
There is no Grandma Betty. She was never there. Instead,
Alyssa's mother is in the driver's seat.
"Alyssa, we're going to go home, honey. Come on,"
Amber says to her daughter.
As Duane helps his stepdaughter out of the wheelchair and
into the passenger seat, the two women in scrubs run toward her, and someone
yells, "No!"
"Yes, she is! Yes, she is!" Duane and Amber yell
back.
The video shows a hand grabbing Alyssa's arm as Duane helps
her into the car. A nursing aide would later tell police she had tried to grab
her.
"Get your hands off my daughter," Duane yells at
the aide.
Duane closes the car door and gets in the back seat.
"Get out of here, Amber," he tells his wife.
"Go, go, go, go, go, go!"
The car drives away from Mayo.
Recalling her escape some months later, Alyssa says it felt
"phenomenal."
"It was like the biggest weight off my shoulders,"
she said...
An officer arrived on the scene 20 minutes later.
A Mayo social worker told him that Alyssa "cannot make
decisions for herself" and that her mother couldn't care for her
"because Amber has mental health issues."
The social worker also told police she "understood
there was no formal diagnosis" for Amber.
Amber told CNN she has no history of mental illness and took
offense to the social worker making such an unqualified pronouncement.
"It's absolutely absurd," Amber said. "She
said it to the police department. She has no reasoning. She has no
justification."…
But something didn't quite make sense to John Sherwin,
captain of investigations for the Rochester Police Department.
If Alyssa couldn't make decisions for herself, as the social
worker had said, and if she needed a legal guardian appointed for her, then who
had been making decisions for her while she was in the hospital?
When police asked that question of Mayo staffers, Sherwin
said, they replied that Alyssa had been making her own medical decisions.
"When doctors were consulting with her in regards to
her medical care, they weren't doing so through a guardian or someone that had
been appointed by the courts. It was in direct contact with the patient,"
Sherwin said.
He said it became clear to investigators that Alyssa
"in fact could make decisions on her own" -- including the decision
to leave the hospital against medical advice.
"There was no abduction. This was done under her own
will," he said. "You had a patient that left the hospital under their
own planning."…
Alyssa and her parents were on the run. They weren't
answering their cell phones, and they weren't at home, either.
They later told CNN they figured the police would bring
Alyssa to a hospital, and given the large number of Mayo facilities in
Minnesota, there was a good chance that hospital would be a Mayo hospital.
"We felt that if [Mayo] got their hands on her, they
would latch on and we wouldn't get her back again," Duane said…
While at the hotel, the family received a phone call from a
Martin County sheriff's deputy. They say they told the deputy that their
daughter was doing well, and they planned to bring her to a doctor the next day
to get her checked.
The deputy said that wasn't good enough. He told them they
were on their way to them, according to the family.
Alyssa and her parents scrambled and left the hotel.
It was now almost 9 p.m., and nearly five hours had passed
since they'd left Mayo. The family was on the road with three police agencies
-- Rochester, Mankato and Martin County -- on their heels…
After the calls from police, Alyssa's parents figured out
that their phones were being pinged and took the batteries out.
They got off the highway and drove on gravel roads without a
map.
"I just kept heading west. I knew I would run into
South Dakota sooner or later," he said…
Less than 12 hours after leaving Mayo, she and her parents
arrived at the emergency room for Sanford Medical Center in Sioux Falls, a
teaching hospital for the University of South Dakota.
They explained to Sanford doctors that she'd had an aneurysm
and left Mayo against medical advice, according to medical records from that
emergency room visit.
The Sanford doctors disagreed with the Mayo doctors on two
crucial points.
Although Mayo doctors had insisted that Alyssa needed to be
in the hospital, the Sanford doctors came to the opposite conclusion: They
prescribed Alyssa medications, gave instructions for her to follow up with a
doctor and told her she could go home.
Mayo had determined that Alyssa lacked the mental capacity
to make her own decisions. The Sanford doctors again came to the opposite conclusion:
They allowed her to make her own decisions and sign her own forms consenting to
treatment.
When police learned that a hospital had cleared Alyssa to go
home, they stepped aside.
"If a doctor at another facility says she's fine and
comes up with a second opinion, that kind of takes the law out of it,"
said Chris Vasvick, a Martin County sheriff's deputy. "That's one doctor's
opinion against another, and that doesn't have anything to do with law
enforcement at all."…
To understand the legal and ethical issues in Alyssa's case,
CNN showed experts key documents, including law enforcement reports; a
transcript of portions of CNN's interview with Sherwin, the detective at the
Rochester Police Department; and summaries of her care written by doctors at
Mayo and Sanford.
The experts emphasized that those documents don't tell the
whole story; only a thorough reading of her full medical records and interviews
with Mayo staff would provide a complete picture.
"You're only hearing one side," cautioned Dr.
Chris Feudtner, a professor of pediatrics, medical ethics and health policy at
the University of Pennsylvania Perelman School of Medicine.
After reviewing the documents, the experts wondered why Mayo
did not allow Alyssa, who was 18 and legally an adult, to leave the hospital
when she made clear that she wanted to be transferred, according to the family.
They said that typically, adult patients have the right to
leave the hospital against medical advice, and they can leave without signing
any paperwork.
"Hospitals aren't prisons. They can't hold you there
against your will," said George Annas, an attorney and director of the
Center for Health Law, Ethics & Human Rights at the Boston University
School of Public Health.
But Alyssa's doctors say she wasn't a typical patient.
"Due to the severity of her brain injury, she does not
have the capacity to make medical decisions," her doctors wrote in her
records after she'd left the hospital.
In that report, the doctors specified that assessments in
the last week of her hospital stay showed that she lacked "the capacity to
decide to sign releases of information, make pain medication dose changes, and
make disposition decisions. This includes signing paperwork agreeing to leave
the hospital against medical advice."
That hadn't jibed with the captain of investigations for the
Rochester police. Sherwin said it didn't make sense that Mayo staffers told
police Alyssa had been making her own decisions, yet in the discharge note,
they stated she wasn't capable of making her own decisions.
It didn't jibe with the experts, either.
"They can't eat their cake and have it, too," said
Feudtner, the medical ethicist at the University of Pennsylvania…
Saver, the professor at the University of North Carolina
School of Law, said that in his four years working in the general counsel's
office at the University of Chicago Hospitals and Health System, he doesn't
once remember the hospital seeking guardianship for a patient who had a
responsible relative or friend who could act as surrogates.
"It's thought of as kind of the atom bomb remedy,"
Saver said. "I'm a little flummoxed what to make of this. They had family
members on the scene to look to."…
More than a year after leaving the Mayo Clinic, Alyssa, now
20, has belied her "grim prognosis."
Last year, she graduated from Martin County West High
School, receiving a standing ovation from her class. She stayed out all night
at her senior prom, where her classmates voted her prom queen.
The local
chapter of Future Farmers of America gave her the Star Farmer award.
Her feeding tube came out a few months after she left Mayo,
and she can eat and speak normally now. She can walk on her own without any
assistance. Last summer, she presented her fantail pigeons at the Minnesota
State Fair and competed in the poultry princess competition.
She finished up her physical and speech therapy in March,
about a year after leaving Mayo. She'll be a freshman at Southwest Minnesota
State University in September.
https://www.cnn.com/2018/08/13/health/mayo-clinic-escape-2-eprise/index.html
Courtesy of a colleague
Courtesy of a colleague
While the details of Alyssa's case are extraordinary -- the Grandma Betty trick, the escape from the hospital with police on their heels -- the core of her story is not uncommon in many ways, according to patient advocates.
ReplyDeleteDr. Julia Hallisy, founder of the Empowered Patient Coalition, says families often tell her that a hospital won't allow their loved one to transfer to another facility. Often, they're afraid to say anything publicly or on social media.
"You sound like a crazy person -- that your family member was held hostage in an American hospital," she said. "People can't believe that would happen. It's like the stuff of a science fiction story."
Kristen Spyker said it happened to her family.
When Spyker's son was born with a rare heart defect, she says she told doctors at the Ohio hospital where he was born that she wanted him to have a surgical repair at a hospital with a larger pediatric heart program.
She said the heart surgeon at the first hospital refused to send her son's medical records to other hospitals. She also says a surgeon resisted her efforts to transfer her newborn son to another hospital to get a second opinion on what surgery he should have for a rare heart defect.
"The surgeon said, 'This is my patient. This is my show. I'm the boss, and I say what happens,' " she said.
She said a social worker, accompanied by hospital security guards, then came into her son's hospital room and said she was worried that Spyker had postpartum depression that was affecting her ability to make decisions for her son's care.
Spyker said the hospital discharged her son only after she threatened legal action.
Her son then had a successful procedure at another hospital -- a different procedure than the one recommended by the first doctor.
When she told her story on Facebook, Spyker said, other parents shared similar stories.
"It was parent after parent after parent saying 'this happened to us,'" she said. "They had been so embarrassed to talk about it, but they felt freer when I said it happened to us."
https://www.cnn.com/2018/08/13/health/mayo-clinic-escape-2-eprise/index.html
CNN reported that Gilderhus’ mother was kicked out of the Mayo Clinic by a physician after she repeatedly complained about the hospital. The report claims Gilderhus’ family was eventually barred from staying at overnight, that the hospital wanted to gain guardianship of the Minnesota teen and that requests to switch infirmaries were ignored – so the family broke her out of the Mayo Clinic after duping hospital officials. The prison-style escape was captured on video by Gilderhus’ family.
ReplyDeleteThe Mayo Clinic issued a scathing statement in response to CNN’s story, declaring that safety is a top priority and “is at the forefront of the care we deliver to each patient.”
“We are unwavering in our dedication to do what is best for every patient, every time. This patient’s case was no exception,” the clinic’s statement said. “Following a thorough and careful review of the care in question, we have determined that the version of events provided by certain patient family members to CNN are not supported by the facts nor do they track with the direct observations of numerous other providers on the patient’s care team.”
The Mayo Clinic said it conducted an internal review that “determined that the care team’s actions were true to Mayo Clinic’s primary value that the patient’s needs come first.” The clinic said it will not discuss specific patients but “provided life-saving care” for the subject of CNN’s report.
“This story lacks further clarification and context that CNN knew but chose not to use,” the statement said.
CNN published a detailed account of how it claims the story was reported.
CNN said the story is “based on interviews with Alyssa and members of her family, a family friend, law enforcement officials and a former member of a Mayo Clinic board, as well as documents including law enforcement records and Alyssa's medical records.”
“While reporting this story, the authors had multiple conversations over many months with Ginger Plumbo, a spokeswoman for the Mayo Clinic. The authors also met with Plumbo and four senior Mayo officials on the condition that the information provided would be off the record,” CNN wrote.
According to CNN, Plumbo told the reporters that Mayo staffers consented to the off-the-record meeting with hopes that the news organization would reconsider its decision to run the story about Gilderhus’ escape.
CNN said that Plumbo initially said Mayo officials would answer the news outlet's questions on the record if Gilderhus signed a consent form – which she signed. However, CNN said the Mayo Clinic then declined to answer questions and provided a statement instead.
"Following careful review of the situation in question, we have determined that the version of events provided by certain patient family members to CNN are not supported by the facts nor do they track with the direct observations of numerous others who were involved. We feel we have provided CNN with more than ample information to support our findings and are deeply disappointed that the producers have chosen to pursue a false story based on a pre-determined narrative,” the Mayo Clinic told CNN. “We will not address these questionable allegations or publicly share the facts of this complex situation, because we do not believe it's in the best interest of the patient and the family.”
http://www.foxnews.com/health/2018/08/15/cnn-mayo-clinic-at-war-over-report-on-teen-who-broke-out-esteemed-hospital.html
This story is based on law enforcement documents from three police agencies in Minnesota; medical records from Alyssa Gilderhus' hospitalization at the Mayo Clinic in Rochester and her visit to an emergency room at Sanford USD Medical Center in South Dakota; a letter from and an interview with an attorney who advocated for Alyssa during her stay at Mayo; correspondence between Mayo and Alyssa's family; and interviews with Alyssa, members of her family, a family friend, law enforcement officials and a former member of a Mayo Clinic board.
ReplyDeleteCNN first spoke with Alyssa's mother, Amber Engebretson, during the final days of her daughter's stay at Mayo. She informed CNN that she and her husband would be taking Alyssa out of the hospital shortly before they did so.
While reporting this story, the authors had multiple conversations over many months with Ginger Plumbo, a spokeswoman for the Mayo Clinic. The authors also met with Plumbo and four senior Mayo officials on the condition that the information provided would be off the record.
Plumbo wrote in an email to CNN that Mayo staffers consented to the off-the-record meeting "with hopes that [CNN] would reconsider [its] decision to share the story. We feel that going on camera or audio disclosing the details about this case and the complex family situation are not in the best interest of the patient or the family."
Before that meeting, Plumbo told CNN that Mayo officials would answer CNN's questions on the record if Alyssa signed a privacy release form. Plumbo provided the form.
After the meeting, Alyssa signed the form, but then Plumbo said Mayo officials would not answer CNN's questions on the record and instead provided a statement, presented here in its entirety:
"Following careful review of the situation in question, we have determined that the version of events provided by certain patient family members to CNN are not supported by the facts nor do they track with the direct observations of numerous others who were involved. We feel we have provided CNN with more than ample information to support our findings and are deeply disappointed that the producers have chosen to pursue a false story based on a pre-determined narrative. We will not address these questionable allegations or publicly share the facts of this complex situation, because we do not believe it's in the best interest of the patient and the family.
Mayo Clinic is committed to the safety and wellbeing of all of the patients we treat. Our internal review determined that the care team's actions were true to Mayo Clinic's primary value that the patient's needs come first. We acted in a manner that honored that value for this patient and that also took into account the safety and well-being of the team caring for the patient."
Prior to sending the above statement, Plumbo sent CNN this statement regarding Mayo's decision to ban Alyssa's mother from the hospital:
"Our care teams act in the best interests of our patients. As a general practice, this includes sharing information with family members and facilitating family visits and interactions with patients and their care providers when the patient is in our care. However, in situations where care may be compromised or the safety and security of our staff are potentially at risk, the family members' ability to be present in the hospital may be restricted."
https://www.cnn.com/2018/08/13/health/mayo-clinic-escape-3-eprise/index.html
Mayo Clinic took the extraordinary move late Wednesday of responding aggressively to what it describes as "inaccurate, incomplete and irresponsible reporting" from CNN, one of the nation's largest news outlets.
ReplyDeleteIn a letter to CNN leadership, Mayo asserted that reporters Elizabeth Cohen and John Bonifield ignored the details of a "complex situation involving a vulnerable adult in a suspected abusive family environment."
"As an organization, we value the role of the news media and do not expect unanimously favorable coverage of Mayo Clinic; our goal is to earn it," said Chris Gade, chair of Mayo's Department of Public Affairs. "But, what we do expect is accurate and fair reporting. For 18 months, we shared information to help the CNN reporters investigate the facts of the situation. They clearly understood our concern for the patient’s safety, they chose to ignore those concerns and did not check or report on public records associated with this case right up to the point the story aired/was published."
Absent from the two-part CNN report, for instance, are court filings documenting recent accusations of abuse by the patient's mother. MPR News reported Wednesday that a judge in Martin County, located about two hours west of Rochester, issued an order last month removing the patient's five younger half-siblings from her mother's care. The filing cited reports of neglect, along with physical and emotional abuse.
But Gade said the CNN reporters were committed to a pre-determined view of events, which date back to 2017, despite contrary facts. He also accused the reporters of "contacting direct patient care staff with veiled threats and asking them to breach confidentiality in order to corroborate information."
The letter from Gade included a dozen bullet points outlining concerns it had with the report. According to Mayo, the reporters chose to disregard and not investigate facts that were shared with them in off-the-record meetings.
Below is the list of what Mayo cites as inaccuracies in CNN's reporting:
The role of the biological father in making care decisions for his daughter during her hospital stay when the mother was unavailable.
Allegations of the mother’s abuse of the patient.
Mayo reported suspected abuse of the patient, a vulnerable adult, to the County as part of our statutory reporting requirement; and reported again when the patient was removed from the hospital without a safe discharge plan.
Mayo never sought to be appointed as a guardian or make decisions for the patient; instead, Mayo notified the County of the patient’s vulnerable adult status and asked for assistance in identifying a decision-maker.
Mayo never denied a request from the family to transfer the patient to a different facility.
Mayo did not arbitrarily remove the mother from the hospital; instead she was removed after she exhibited escalating disruptive and aggressive behavior that interfered with the care of her daughter and resulted in multiple staff members reporting fear for their safety. A team of Mayo staff members also met with the mother and stepfather to explain why she was removed and they expressed understanding.
Our care team provided appropriate pain management according to the pain needs of the patient and was concerned when the mother requested opioids for her daughter so that the mother could get some sleep.
Mayo said the "egregious errors" in the story left the clinic with no choice but to share additional information about the circumstances. "This is a decision we do not take lightly, and it is highly unusual for us," a news release said.
https://www.medcitybeat.com/news-blog/2018/mayo-says-family-abuse-involved-cnn-story
Few such incidents are as dramatic as the one reported this week by CNN, in which a southern Minnesota woman named Alyssa Gilderhus was taken from her room under false pretenses by her stepfather, who wheeled her to the parking lot and then hustled her into the family car before nurses could stop him.
ReplyDeleteMedical ethicists who reviewed the case said it is a cautionary tale nonetheless, revealing breakdowns in doctor-patient relationships that can compel patients to leave even before they are stable.
“Mayo is an outstanding institution. I’m shocked this kind of case got as far as it did there,” said Arthur Caplan, a former University of Minnesota medical ethicist who now works at New York University and reviewed some of the case documents at CNN’s request.
The incidents, known as AMA for “against medical advice,” are rare; they account for 1 to 2 percent of discharges from U.S. hospitals. And they’re less common in Minnesota, where the state hospital association reported that they occurred in .68 percent of discharges in 2017.
But recent studies suggest they are becoming more frequent. Often the reasons are simple, according to local doctors — patients who insisted on leaving the hospital early for a wedding, for example, or because they had ailing loved ones who needed them at home. Another cause may be the increasing complexity and cost of medical care.
“They see these bills and big copays and say, ‘I don’t have this money,’ ” Caplan said…
Doctors can gather all the information they want to give a patient a professional opinion. The patient doesn't always follow that advice though, and often will exit a hospital with the doctor strongly urging against it. Cases like that are known as AMA: against medical advice.
A carefully plotted escape from Mayo Clinic last year — by a young woman and her parents who clashed with her doctors — was a bizarre example of a growing concern: patients leaving hospitals against medical advice.(continued)
(continued) Few such incidents are as dramatic as the one reported this week by CNN, in which a southern Minnesota woman named Alyssa Gilderhus was taken from her room under false pretenses by her stepfather, who wheeled her to the parking lot and then hustled her into the family car before nurses could stop him.
ReplyDeleteMedical ethicists who reviewed the case said it is a cautionary tale nonetheless, revealing breakdowns in doctor-patient relationships that can compel patients to leave even before they are stable.
“Mayo is an outstanding institution. I’m shocked this kind of case got as far as it did there,” said Arthur Caplan, a former University of Minnesota medical ethicist who now works at New York University and reviewed some of the case documents at CNN’s request.
The incidents, known as AMA for “against medical advice,” are rare; they account for 1 to 2 percent of discharges from U.S. hospitals. And they’re less common in Minnesota, where the state hospital association reported that they occurred in .68 percent of discharges in 2017.
But recent studies suggest they are becoming more frequent. Often the reasons are simple, according to local doctors — patients who insisted on leaving the hospital early for a wedding, for example, or because they had ailing loved ones who needed them at home. Another cause may be the increasing complexity and cost of medical care.
“They see these bills and big copays and say, ‘I don’t have this money,’ ” Caplan said.(continued)
(continued)In most AMA incidents, doctors grudgingly agree to the discharge; they have patients sign forms acknowledging they are leaving against medical advice and then help them plan their return home.
ReplyDeleteYet they can produce high emotions and conflict, said Dr. David Alfandre, a medical ethicist for the U.S. Department of Veterans Affairs, who published a book last month on AMA discharges.
“As you’ve seen from this sensational example, there’s often a lot of frustration and outright anger, even on the part of the treatment team, and there’s a real break in the doctor-patient alliance,” he said…
In CNN’s account, the Engebretsons felt that a head doctor in the rehab unit treated them rudely and ignored their concerns about weaning Gilderhus off opioid painkillers. Mayo officials countered that Amber Engebretson was physically aggressive with staff and unwilling to learn about her daughter’s post-discharge care. Mayo eventually ordered that she have no contact with Gilderhus at the hospital.
Mayo officials at “the highest level” had discussed concerns regarding the parents, according to statements from the hospital, and sought “judicial advice” about appointing a substitute decisionmaker for Gilderhus. At the time she left, she had cognitive deficits, a wound from a breathing tube that was recently removed, and a feeding tube that the family hadn’t been trained to manage at home.
“We … made decisions based on what we felt is best for the future of this patient,” Mayo’s statement said.
Mayo officials aren’t sure they would characterize the escape as an AMA case. They initially considered it an abduction and notified Rochester police, who tracked the Engebretsons until they reached a Sioux Falls hospital, Sanford USD Medical Center. At that point, police halted the pursuit and Mayo backed off because the fragile woman was at least in another hospital.
Mayo officials found a signed AMA form in Gilderhus’ room, but only after she left, said Mayo spokeswoman Ginger Plumbo. “It wasn’t like we knew about the form and ignored it,” she said.
Dr. Rahul Koranne, chief medical officer of the Minnesota Hospital Association, said he believes Minnesota has a lower rate of AMA cases because the state has emphasized training doctors and nurses on how to discharge patients so they stay healthy once back home.
“It’s a rarity where a patient just up and leaves,” he said.
While there have been few studies on preventing AMA discharges, Alfandre said the common thread in almost all cases is that patients or relatives feel upset or powerless.
“Hospitals can be infantilizing and restrictive,” he said. “Sometimes the only thing [patients] can do is say, ‘I’m out of here. I’m leaving.’ ”
Court records show that Duane and Amber Engebretson have separated since the February 2017 Mayo incident. In a filing in Martin County Court last month, the couple’s five minor children were placed in Duane’s emergency custody due to allegations of neglect and drug abuse against Amber.
Mayo officials argued this week that they were correct to notify authorities to pursue the family because the patient fit the definition of a “vulnerable adult” who needed protection given her fragile health and the uncertainties over where her parents were taking her.
http://www.startribune.com/mayo-patient-s-escape-underscores-a-rare-but-growing-problem/491230291/