The day of Ben Buckley’s final asthma attack was unremarkable in almost every way, or at least that’s how it seemed until it stopped being unremarkable and started being something utterly unreal and, ultimately, heartbreaking.
It was January 18, 2014, and Ben, who was 7, went to his big sister Madison’s basketball game with his family. He had to use his Albuterol rescue inhaler in the morning before they left the house, but that was not unusual. Ben, who had chronic asthma, used his inhaler a lot and he’d been sick that winter with a lung infection, which made his asthma worse.
So when Ben announced to his father that he wanted to delay a trip to buy baseball cards after the game so he could go home and use his nebulizer, that didn’t worry his parents, Jeff and Cristin. The nebulizer had always worked to calm Ben’s symptoms in the past.
But it didn’t work this time.
“Jeff set everything up and Ben sat on the couch, and at that point he started to panic a bit. He looked at my husband and said, ‘It didn’t work,’” Cristin Buckley said.
Jeff Buckley decided to take Ben to the doctor immediately, but it was too late. Ben collapsed on the way to the car. Despite receiving CPR within two minutes of his collapse, Ben never regained consciousness or breathed on his own after that, despite living another five days.
Before that day, Ben Buckley had never even made a trip to the emergency room because of asthma, an illness his parents believed they understood and had under control.
“This was not something that was ever even in the realm of possibility to us. We want to prevent other parents from experiencing this kind of loss,” Ms. Buckley said. “So many people don’t realize how serious asthma is or how to treat it correctly. We didn’t either.”
This lack of awareness about asthma is something the Connecticut Hospital Association (CHA) is trying to change. CHA has launched a statewide Asthma Initiative that brings together hospitals, clinicians, and community partners to improve patient treatment and access, and design new models of care that will transform community partner and hospital relationships.
The initiative, which was developed by the CHA Committee on Population Health, is being led by Anne Diamond, JD, CNMT, CEO, UConn Health John Dempsey Hospital, and Stuart G. Marcus, MD, President and CEO, St. Vincent’s Medical Center.
Ms. Diamond and Dr. Marcus said the initiative was borne out of the understanding that asthma remains a significant public health problem, despite the prevalence of effective medications, for a variety of factors that have to do with education, economics, and access to care.
“Not only do kids and adults still die from asthma, but there are a lot of missed school and lost work hours because of asthma,” explained Dr. Marcus. “It’s just not true that we have this under control.”
Dr. Marcus and Ms. Diamond both said that a goal of the initiative is to ensure that all clinicians who treat asthma patients are trained to educate them about how to manage their asthma effectively – which includes understanding and minimizing their triggers and correctly using preventative medication – and knowing when to seek medical care if their symptoms worsen.
In practical terms, this will involve a statewide effort to ensure that healthcare providers at hospitals and in the community are all using the same training method – a five-step technique for training staff and, subsequently, patients about how to use asthma inhalers correctly. It also involves a “teach back” component to ensure that everyone can demonstrate the correct method.
A second part of the initiative is improving discharge planning so patients know how they are going to manage their asthma once they leave the hospital. This will include a “warm hand-off” from the hospital to the primary care physician to ensure that patients follow through with their discharge plan and subsequent asthma care is managed by their primary care doctor, which would optimally lead to fewer hospital readmissions.
“We all need to be singing out of the same hymnal here,” said Ms. Diamond. “Our intention is to promote more consistency across the board when it comes to treating asthma, and to put these patients in a better position to prevent major problems from the next attack.”
Although many believe asthma is one of the diseases we have “under control” as a society, the statistics tell another story. The prevalence of adults with asthma in Connecticut is on the rise – it rose from 7.8 percent in 2000 to 9.2 percent in 2010, according to the Connecticut Department of Public Health (DPH).
And, although asthma is the single most avoidable cause of hospitalizations through effective primary care and management of environmental triggers, it is one of the most common reasons for pediatric visits to the ED. In 2009, the state spent $80.3 million on asthma hospitalization charges and another $32.6 million on emergency department visits, according to DPH.
Asthma is a chronic disease of the respiratory system that is characterized by reversible obstruction of the airways. According to DPH, it disproportionately affects children, females, Hispanics, African Americans, and residents of the state’s five largest cities – Bridgeport, Hartford, New Haven, Stamford, and Waterbury. According to the Centers for Disease Control, 36 Connecticut residents died from asthma in 2013.
“In pediatrics, asthma is the number one cause of hospital admissions. And it really, truly can be prevented,” says Veronica Mansfield, APRN, the Asthma Care Manager at Middlesex Hospital’s Center for Chronic Care Management.
Ms. Mansfield and Mike Corjulo, an APRN at the Children’s Medical Group in Hamden, said it is frustrating that despite all the asthma guidelines and effective medications for preventing and treating the disease, asthma remains such a public health threat.
“Despite everything we know about asthma and how to prevent it, our asthma outcomes have not improved much at all over the last decade,” says Mr. Corjulo. “The question is why?”
The answer to that question is, naturally, complex and depends on a variety of factors, including whom you ask.
Mr. Corjulo and Ms. Mansfield, certified asthma educators, believe asthma remains a public health problem, in part, because of the way the modern healthcare system operates – namely, it does not pay for educating patients about their asthma.
“There’s no code we can bill. We can’t schedule an appointment for a half an hour of education,” Mr. Corjulo said.
Michelle Cloutier, MD, a Pediatric Lung Specialist at Connecticut Children’s Medical Center, who created the Easy Breathing Program 18 years ago, cautioned that there is not an easy solution to the asthma problem.
Although better education is certainly part of the solution, Dr. Cloutier said, it won’t solve other issues connected to asthma, such as unanswered questions about why asthma prevalence has risen.
“The asthma target is shifting a bit on us,” said Dr. Cloutier, explaining that past triggers – such as air pollution – are no longer as relevant as new factors, such as urban living conditions and more time spent indoors. Understanding these factors better, as well as the genetic links to asthma, is critical to solving the problem, she said.
“There is no single solution to asthma and it is probably naive for any of us to think that there is,” said Dr. Cloutier, who is lending her expertise to the Connecticut Asthma Initiative. That said, Dr. Cloutier said Connecticut should do everything it can to prevent asthma deaths.
“No one should die from asthma,” said Dr. Cloutier. “We have outstanding medications and we really should be doing a better job of managing asthma. Education is a big part of asthma management as well.”
For the parents of Ben Buckley, being better educated about their son’s asthma treatment might have made all the difference.
Cristin Buckley said they didn’t realize until after he had died that Ben was using his albuterol inhaler too often, which was an indication that his asthma was not under control.
“At no point did the doctor, pharmacist, or allergist say, ‘Hey, you’ve picked up six albuterol inhalers in a couple of months. That’s probably not okay,’” said Ms. Buckley. “I’d say trust your gut. If you think your child’s asthma isn’t under control, it probably isn’t and you should call your doctor. You know when something is wrong. Tell them everything.”
Since her son’s death nearly two years ago, Ms. Buckley has established a charitable foundation in Ben’s name, The Benjamin Buckley Foundation, and resigned from her job as a teacher to put all her efforts into educating other parents about asthma. She was a guest speaker at the October 2015 meeting of the Connecticut Asthma Initiative and travels across the country telling her son’s story to other audiences, she said, in the hope that she can help prevent the deaths of other children.
She credits the ED staff, who gave CPR to her son for nearly 90 minutes, with giving her family the chance to say goodbye to Ben.
“I remember looking up at these doctors and nurses who were just unbelievable in their efforts to get his heart started and saying, ‘When do you stop?’ and they said, ‘We don’t stop. He’s seven years old. We don’t stop,’” said Mrs. Buckley. “Ben hung on for five days so everyone could say goodbye to him. I don’t know how we would have been able to survive it if that hadn’t happened.”
“No parents should have to go through this,” she added. “That’s why I’m trying to help change things.”