At 7 years old, Spencer Beckstead had barely had a chance to live, but here he was at the emergency room at Orlando Regional Medical Center, dying. And somehow, nobody seemed to realize it was happening until it was too late.
He had been admitted to the emergency room on May 29, 2006, with a fever, dehydration and diarrhea, which was not uncommon for Spencer, who had battled serious health issues since he was diagnosed with a massive brain tumor when just a year old. His parents sought treatment for him at St. Jude Children’s Research Hospital in Memphis, Tenn., where he underwent years of treatment before he beat his cancer and was stable enough to move with his family to Orlando in 2004. But brain surgery and years of chemotherapy left him with lingering health issues and disabilities, and he was a frequent visitor to the hospital. “We took him in whenever he had a fever or a temperature spike, and he would be there for about three days,” his father, John Beckstead, says. “Ninety percent of the time we took him in, all he needed was an antibiotic.”
Perhaps that’s what he needed this time, as well. But if so, that antibiotic did not come. When Spencer arrived at the emergency room at 8:20 a.m., his heart rate, at 147, was elevated. He had a temperature of more than 101 degrees, and his blood pressure was 69 over 21. Though his vitals were not normal for the average child, according to a court deposition from Dr. Jakub Mieszczak, a resident who cared for him at the emergency room on the day he was admitted, they were considered “not unusual” for Spencer, who had what doctors called a “complex” medical history. So the staff gave him a glucocorticoid steroid to keep his heart rate and blood pressure up. They did not treat him for dehydration because, Mieszczak said, his assessment of Spencer was that he was “not dehydrated.” He ordered cultures to look for sources of potential infection, but they would take 48 hours to return – in the meantime, antibiotics were not offered, Mieszczak said, because of the risk of antibiotic resistance. So Spencer waited while emergency room staff monitored him.
Over the next two hours, his vital signs fluctuated. By 1 p.m., his temperature, heart rate and respiratory rate were up again, and his blood pressure had dropped. At 1:22 p.m., nearly five hours after the Becksteads first arrived at the emergency room, Mieszczak called to admit Spencer to Arnold Palmer Hospital for Children, where the child had been a patient on and off since 2004. Fluids were ordered for him while they waited for transport to arrive. But at 1:52 p.m., it was clear that Spencer was in distress. By 2:15 p.m., he began to code. Mieszczak was at lunch.
Spencer went into massive cardiac and respiratory arrest in the emergency room that day. He coded twice and was resuscitated both times, but not before suffering from massive brain damage. While his father acknowledges that Spencer’s previous health battles left him with major health concerns – he needed a feeding tube, his vision was extremely limited and he was paralyzed on one side of his body – prior to his admission to the emergency room on May 29, he says that Spencer was able to communicate, interact with his friends and family and participate in physical therapy. After his cardiac arrest in the emergency room, he fell into what his doctors called a persistent vegetative state.
Beckstead says he felt rage and anger that day in the emergency room, but he wasn’t yet in total despair. He says he had hope that his son would eventually recover some of the functionality he had before. After all, Spencer had already beat the odds once when he survived a brain surgery that removed a chunk of his brain the size of an adult’s fist, and more than 30 months of chemotherapy and radiation at St. Jude. The experience had already devastated the child once, Beckstead says.
“I just thought I was starting all over again,” Beckstead says. “Back to square one. He was just about in this shape when they operated on him, and he came back.”
Beckstead says he never imagined that, just four months later, his son would be dead.
“On Oct. 17, 1999, my life stopped at 10:20 in the morning, when they told me Spencer had a brain tumor,” Beckstead says. A box of newspaper clippings, old photographs and mementos, including a toddler-sized porkpie hat that Spencer used to wear to hide the network of scars that covered his head, are spread out on a table around him. “This was my pride and joy. This was why I lived, this was why I did everything. And they told me he had three months to live.”
But Spencer didn’t abide by that timeline. Though the odds were not in his favor, he endured his treatments. Three months turned to six, then a year, then another. “And that’s how we lived for four years,” Beckstead says. “He didn’t have time to die. Nobody told him. He just went on his merry way.
He was busy. He was always busy.”
So busy, in fact, that he became something of a minor celebrity on the PGA golf circuit at just 4 years old. In 2001, Memphis golf pro Shaun Micheel was visiting patients at St. Jude when he ran across Spencer and his dad in a hallway. He hit it off with the elder Beckstead, who happened to be a huge golf fan – and, for some reason, he also struck up an unusual but deep relationship with Spencer.
“Somehow, I just found something special with him, and I don’t know why,” Micheel told the Orlando Sentinel in a 2003 profile of the boy, whom Micheel drew attention to when he blurted out, “Hello, Spencer Beckstead in Orlando, see you next week,” on camera right before delivering what the Sentinel called “one of the greatest shots in major-championship history” at the 85th PGA Championship in 2003. Suddenly, the golf world was wild about Spencer. He appeared in stories in the Sentinel and the Memphis Commercial Appeal. PGA Tour Productions filmed a feature on Spencer and Micheel palling around together. Spencer’s dad even started a nonprofit organization called Clubs for Cancer Kids that hoped to donate golf equipment to young cancer survivors interested in the sport.
Spencer was, by all accounts, an optimistic kid, and that was a lot of his appeal. Even after all he endured, Beckstead says, he had no idea he was a statistical survivor. Most of the kids who were treated with him at St. Jude did not live as long as Spencer did. “We only really cure a few children [of cancer],” he says. “Mostly we just prolong the lives of children, and they die from the adverse effects of the treatment itself.”
And that gave his father an optimism about his son’s future, despite his health problems.
“This kid was bulletproof,” Beckstead says. If only that were true.
According to court records, doctors who treated Spencer Beckstead between May 29, 2006, when he was admitted to Arnold Palmer and Sept. 7, 2006, when Spencer died there, said nothing about Spencer was average or predictable. His body was unable to maintain its own temperature, so he needed a special heating and cooling blanket to keep his temperature from spiking too high or dropping dangerously low. He experienced “autonomic storms,” which drove his heart rate and core temperature up and down. His respiratory rate and blood pressure would also dip and rise while he was in the hospital. His father says that over the time he spent in Arnold Palmer, Spencer did experience some neurological improvement, but he felt that his son still needed constant monitoring.
In Spencer Beckstead’s care progress note, dated Sept. 1, 2006, six days before he died, his condition was noted as follows: He was in the pediatric critical care unit being treated following cardiopulmonary arrest. He was suffering from static encephalopathy, panhypopituitarism, shunted hydrocephalus, autonomic dysfunction, respiratory distress and osteopenia with multiple bone fractures.
A physical exam revealed that his vital signs were fairly stable, but neurologically, there was little activity. He didn’t move his arms or legs. His eyes didn’t open. His pupils were fixed.
And yet, in a note in Spencer’s medical chart, written by Dr. Mary Farrell a pediatric intensivist who had been treating Spencer, he was to be released from critical care. Despite physicians’ notes that indicate that doctors had been preparing to discharge Spencer and possibly even send him home, Beckstead says that wasn’t what his parents wanted, and that Spencer still needed ongoing intensive care.
According to Dr. Farrell’s notes, she was upset with Spencer’s father. He had recently called police to report that Spencer had a broken leg, and the matter was investigated by the Florida Agency for Health Care Administration. Though the police records on the case do not indicate that Beckstead accused Farrell of abusing his son, she believed that he accused her. And she took it very personally.
A note made at 8:50 a.m. Sept. 1 indicated that she wanted to see Spencer moved out of intensive care and onto a regular floor, but Beckstead “is unwilling to have his child transferred.” As a result, she said, they had “come to an impasse regarding care and his demands are unreasonable at this time. I feel this is in the child’s best interest that he be cared for by another physician. I told him he needed to find another physician to care for his child.”
The only problem is that Farrell’s physicians group – known at the time as Children’s Critical Care Associates – was the only group contracted to provide intensive care to children at Arnold Palmer Hospital. And she wasn’t just terminating her own relationship with Spencer – when Farrell first told Beckstead that she would no longer treat his son, he requested that Spencer be transferred to one of the other two doctors in her group, Dr. Lawrence Spack. But according to Farrell’s notes, she told him that would not be possible because none of the pediatric intensivists would continue to work with him. His only option would be to find a lower level of care for Spencer – while he would be permitted to physically remain on the critical care floor, none of the critical care doctors would look after him. Beckstead then told her he’d work with a doctor who had treated his son before, Dr. Matthew Seibel. She told him he’d have to make arrangements on his own.
“I informed him that he needed to contact Dr. Seibel,” she wrote. “He refused and said I should do it. I told him he needed to do it. I also told him Spencer does not need PICU Critical Care services. He can remain in [illegible] and be cared for by Dr. Seibel, but the critical care group will no longer be responsible for his care. … In the event he should become critically ill, the critical care services will transfer him to the [pediatric intensive care unit] to stabilize him and then transfer him to All Children’s Hospital in St. Petersburg for ongoing care. Our role in his care will be to stabilize him only.”
According to Beckstead, who is now seven years deep in a medical malpractice suit against Orlando Regional Medical Center, Arnold Palmer Hospital, Critical Care Associates and a handful of physicians who cared for his son, including Dr. Mary Farrell, her partner in Critical Care Associates, Dr. John Tilelli, and Dr. Matthew Seibel, the notion that his son no longer needed critical care and should have been released from the unit is untrue. Despite what his doctors contend, he says – and medical records and court depositions support – that Spencer’s condition fluctuated. It could be hard to tell what was going on with him, or to determine what constituted “normal” for such an abnormal patient.
Nobody at Arnold Palmer Hospital would comment for this story because of the medical malpractice case that Beckstead brought against the hospital and its doctors. But according to court documents, Farrell’s decision to terminate the relationship with Beckstead as a patient was patient abandonment: “Dr. Farrell terminated Spencer as a patient, both for herself and every other intensivist in the hospital’s critical care physician group, without notice and without obtaining appropriate coverage,” Beckstead’s lawsuit says.
In her deposition for the case, Farrell, who is now chief of medical staff for Orlando Health, says she didn’t feel she had much choice but to tell Beckstead she could no longer care for Spencer after he complained to police about his son’s broken leg. “I was hurt because I was accused of being – abusing a child. I am hurt, and hurt to this day,” she said, noting that if Beckstead had issues with his son’s care, he should have talked to her. “You know, I was honest with Mr. Beckstead throughout all of my dealings with him, and I expected the same in return. And when that relationship – when he accused me of something, I – at that point, I could not. I could not under any circumstances take care of somebody who accused me of – and the mistrust that was going to be there. It’s like being unfaithful in a marriage. The trust is gone, and I couldn’t take care of him again.”
Four days after Spencer was transitioned to regular hospital care, he got sicker. “The staff, including the resident physicians and the hospitalist, either totally missed his progressive decline or looked the other way as Spencer’s medical condition deteriorated,” the court case says. Dr. Seibel was not on duty. Spencer’s heart rate and breathing sped up, and on the morning of Sept. 7, a nurse’s notes say they found Spencer to be “dusky,” lacking peripheral pulse, and seeming to be struggling to breathe. By the time a critical care intensivist was called to check in on him, it was too late. Spencer coded once again. Only this time, they weren’t able to bring him back.
According to the Florida Department of Health, a doctor is not obligated to keep a difficult patient, and there are no rules or laws that specifically address how a doctor should go about cutting off a relationship when things go south. However, says Pamela Crain, deputy press secretary for the Florida Department of Health, “The physician is always required to practice within the prevailing standard of care.”
And the prevailing standard, according to Dr. James David Moser, division chief of otolaryngology at Nemours Children’s Hospital – who will testify as an expert witness in Beckstead’s case – is to give patients enough time to make arrangements for appropriate care in the event that a physician should want to terminate a relationship. Moser says that he thinks Farrell made a mistake in firing Spencer as a patient without allowing enough time for the Becksteads to make appropriate arrangements – but even worse, he says, is the fact that the hospital did not step in to fix the error before the patient was harmed.
“Most people might not think that’s a big deal, but it is a big deal,” Moser says. “If you read about firing a patient from your practice, you have to give them 30 days’ care while they try to find a new doctor.”
Moser provided care to Spencer briefly when he was called in to consult on some ear problems. He befriended Beckstead because, as Moser says, “he had the gift of gab and we talked about golf clubs and putters.” He says he checked on Spencer periodically, and when he heard from Beckstead that Farrell had fired the child as a patient, he says he thought, “They are going to fix that.” He says he figured that after a day or so, cooler heads would prevail and either Farrell or hospital administration would realize that the decision to fire Spencer on the spot was a mistake. “Then over the next couple of days, they didn’t,” he says. “And then I heard that Spencer passed away, and it was a surprise to me.”
In his deposition for the Beckstead case, he was asked why he thought Spencer’s situation was so unique that he could not be cared for by a hospitalist (a doctor who specializes in the general care of hospitalized patients). “Well, the fact that he died two days later probably tells you he was in pretty critical condition and should not have been taken care of by a hospitalist,” he responded. “It wasn’t like they came up to him and said, ‘Well, let’s see what we can do to get you transferred to another hospital,’ it was, ‘We’re just not going to take care of you. And, oh, by the way, we’re going to turn you over to our hospitalists, who are not trained to take care of your child.’”
Beckstead’s relationship with Spencer’s caregivers, it must be noted, was not entirely positive – over the time his son was in Arnold Palmer Hospital, there were some pointed suggestions that Beckstead smoked marijuana in or near the hospital (at one point, Beckstead says, he was accused of smoking pot in Spencer's room, while the child was on eight liters of oxygen) and that he had inappropriate conversations with female staff members. At one point, a complaint was made by hospital staff to the state Department of Children and Families that his kids were neglected and living in filth. (DCF determined that the complaint was not founded.) In 2005, he was charged with trespassing for what the hospital’s risk management specialist Posey Kenney called “tampering” with Spencer’s heating and cooling blanket – Beckstead says he was adjusting his son’s blanket after requesting help that never arrived. At one point, he was even accused of having Münchausen by proxy, a syndrome in which a caregiver misleads others into believing that a child has a medical issue that may not exist – again, the state Department of Children and Families determined that the claim was unfounded. According to the police report, hospital administration even decided to videotape Spencer’s room “to protect them from false allegations.”
In court documents, Beckstead’s reputation is dragged through the mud – his past drug and alcohol use, his employment history and employment status, among other things, are questioned. “I couldn’t care less how they try to discredit me,” he says. “I’ve been dealing with this crap for almost 15 years.
And, you know, what I was before, before you are told that your child has three months to live, and what you become after, are two different people.”
Beckstead, for the record, has high expectations of people, and at times, he challenged the care doctors and nurses were giving to his son. In family medical situations, being a strong advocate for a patient can sometimes be all that stands between treatment and neglect. So Beckstead decided to be an advocate. Perhaps, he says, he was too aggressive an advocate for his son – because his advocacy will continue to haunt him even after his case is settled. Particularly since his perspective, as a parent, now has to go up against that of his physicians, who clearly don’t feel directly responsible for Spencer’s death.
“Spencer was stable at the time and had been, as we have already outlined, for the past month,” Farrell insists in her deposition. “His final demise occurred on the 7th of September. And if he had been discharged and this happened at home, am I still responsible for his care?
“I know that looking at it three years later and sitting here, that I would never be able to change the course of events and would have changed anything that would have affected Spencer’s outcome, and neither would any of my colleagues. … None of us could have done anything to save him.”
And perhaps that is the case – it is possible that nobody could have fixed the problem that killed Spencer. But it’s the following line in Farrell’s deposition that Beckstead particularly disagrees with:
“Spencer died on Sept. the 7th, I was not responsible in any way for his death.”
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