NEW YORK — Gene LoCastro was diagnosed with pulmonary fibrosis in August 2013. The painful disease causes scar tissue to grow inside the lungs, making it difficult to breathe.
“As the lung tissue thickens, your lungs can’t properly move oxygen into your bloodstream,” according to the National Heart, Lung and Blood Institute. “As a result, your brain and other organs don’t get the oxygen they need.”
Still, 48-year-old LoCastro says, he felt “more or less OK” until August of last year, at which time he was assured by his pulmonologist that his disease was progressing “normally” and there was no cause for concern.
“I was always in good shape,” he said. “I always took care of myself and went to the gym … worked out three to four days a week, haven’t had a drink or drug in over nine years.”
But LoCastro says he instinctively knew that something more was going on inside his body and decided to seek a second opinion. He was ultimately diagnosed with dangerous blood clots in his lungs and was admitted to NewYork-Presbyterian/Columbia University Medical Center in October.
“It was downhill from there,” he said. In November, LoCastro’s heart began to fail. Doctors said he needed a double lung transplant to survive.
“It was pretty nutty, the way it happened so quickly,” he said. “But I also … knew in the back of my head that I was going to be OK no matter what. I kept on saying, ‘I’ve just got to be there for my family, be there for my daughter, my wife; stay strong.’ ”
Gene LoCastro was diagnosed with pulmonary fibrosis in August 2013. The painful disease causes scar tissue to grow inside the lungs, making it difficult to breathe.
A modern-day chaplain
LoCastro says his struggle to regain his strength was, on the whole, more mental than physical. “Physically, I knew I’d be able to get back at it,” he said. Mentally, he tried to keep a positive attitude and did a lot of meditation to stay centered.
Shortly after arriving at NewYork-Presbyterian, LoCastro remembers, his social worker asked whether he wanted to see a priest or a chaplain. Because he considers himself more spiritual than religious, LoCastro opted for the latter and was introduced to nondenominational chaplain Joel Nightingale Berning.
“We just connected right away,” LoCastro said of Berning. “We had a lot of the same interests. We just talked about life in general. Didn’t have to be religion or anything else. … Could’ve been baseball; could’ve been family.”
By the time LoCastro was scheduled for a double lung transplant in December, Berning had become an invaluable member of his care team, right alongside the hospital’s medical doctors and nursing staff.
“Nobody comes to the hospital wanting to be in for spiritual care — at least not consciously,” Berning said. Once they arrive, however, some patients have straightforward requests, such as physical items they need in order to pray. “The less straightforward requests are the existential questions — emotions, feelings, spiritual pain — that come out when people get new diagnoses or are trying to cope with some nightmare they never wanted to be in, or their batteries are low after a really long course (of treatment),” he said. “We try to be what they need us to be.”
One of the challenges faced by LoCastro, and many other patients in an intensive care setting, is an inability to effectively communicate wants and needs. ICU patients are often awake and alert but intubated, meaning they have tubes down their throat and can’t talk.
“My training was mostly about how to have conversations with people about their soul, whether literally or metaphorically,” Berning said. “When I started out (in the ICU), I felt very useless and frustrated. I felt like I had something to offer if we could talk … but if they don’t have a physical voice, it was a real stumper.”
That frustration sparked an idea that transformed LoCastro’s hospital stay. Berning had long observed doctors and nurses using communication boards so patients could clearly express their physical needs. He remembers thinking: Why hasn’t anyone developed a board to help patients express their spiritual desires?
Modern-day spiritual care
Berning got to work, along with his fellow chaplain, a Buddhist monk and professional artist named Seigan Ed Glassing. Together they drew up — quite literally — the first spiritual care board.
“Chaplains, we often talk about four basic ‘flavors’ of feelings: mad, sad, glad and ‘afrad’ — or afraid,” Berning said. “We laid it out in those columns and tried to make it very … inclusive, colorful and easy to interact with.
The spiritual care board developed by NewYork-Presbyterian chaplain Joel Berning.
“Instead of ‘I’m nauseous, and I’m in pain,’ it’s ‘I’m lonely,’ ‘I’m scared,’ ‘I’m frustrated,’ ‘I’m worried,’ ” he said. “Instead of ‘turn me,’ ‘suction me,’ ‘toilet me”; it’s ‘hold my hand,’ ‘play music,’ ‘pray,’ ‘get a priest’ — stuff like that.”
LoCastro began utilizing the board after his operation, when he was rendered unable to speak for weeks on end, while his body recuperated from the double lung transplant. More than using it to make requests for specific things, LoCastro sought to express how he was feeling, which didn’t at all surprise Berning.
“What are (most patients) feeling and experiencing?” Berning asked rhetorically. “Most of it — or a lot of it — was really as you’d guess: a lot of frustration, a lot of sadness, a lot of fear. The second most commonly identified emotion was loved, which really surprised us. And I don’t have an answer for exactly why that is, but it’s my favorite finding, because I like to think that when people are critically ill, they do have a lot of scary, horrible, awful feelings, but we are also trying to give them as much love as possible.”
Modern medical technology
“One of the biggest changes in critical care medicine over the last decade is that we try, whenever possible, not to sedate patients and not put them in medically induced comas when they’re on life support — especially (a breathing machine),” said Dr. Matthew Baldwin, a pulmonary and critical care physician at NewYork-Presbyterian who was not involved in LoCastro’s care. “Studies over the past decade have shown that … patients who receive less sedation tend to have better physical function and even better mental function.”
That said, this new paradigm of care has also presented a new problem, says Baldwin. Patients are awake and alert but unable to effectively communicate.
“Oftentimes, I walk around the ICU, and I’ll see a patient on a ventilator, wide awake, sitting up in bed,” he said. “They’ll be tapping on the side of the bed. Clearly they’re anxious. You can just see it on their face.”
Baldwin remembers the first time he saw Berning in the ICU, sitting at a patient’s bedside, holding the spiritual care board and a dry-erase marker.
“I stood there for a moment, and I thought it was the most wonderful thing, because … what you see is a calm patient sitting there and pointing to these things, smiling at times and nodding, despite all the numbers up on the screen, despite the mechanical ventilator at their side, giving them the breaths that they themselves alone cannot breathe. We realized immediately that this was transformative. We used to call chaplains for our consult for death, and now we call them for a consult for life.”
Together, Baldwin and Berning conducted a study on how effective the board was at addressing the spiritual needs of their ICU patients. Before using the board, the 50 patients who participated rated their level of anxiety as an average of 64 on a scale of 0-100. After using the board, their average self-reported anxiety level dropped to 44, a reduction of 31%.
“It helps the patient better contextualize their illness and think about what they need to do, psychologically, to pull themselves through it and to get back on their feet,” Baldwin said. “It’s these coping mechanisms that we’ve never provided the patients before while in the ICU, is what makes this so exciting.”
Like many survivors of a critical illness, LoCastro says he’s battled some depression. And, Baldwin says, this is the area in which his study saw its most promising results.
“Patients said that they … were better prepared to cope with their continued recovery after hospitalization,” he said. “And they felt more at peace with who they were and what they had gone through.”
For his part, LoCastro believes so highly in the power of the spiritual care he received that he regularly returns to NewYork-Presbyterian to offer words of encouragement to patients in the ICU. Like Baldwin and Berning, he hopes more hospitals across the country will integrate the spiritual care board (now licensed and sold by Vidatak) into their standard of care.
“Look, I just want to get healthy,” LoCastro said. “I have two new lungs. I’m doing better than ever. I’m at 100% oxygen. I want to live a long time, and there’s no reason why I can’t.”
