The Art — and Sometimes Luck — of Medicine
By Michael Vitez
Lisa McCown, 43, a waitress at the Golden Dawn diner in Burlington, N.J., liked going to casinos on her day off. Her mother once won $40,000 on a penny slot. This family knows a lot about long odds.
Back in April, Lisa got the flu. After a few days, she told her daughter to call an ambulance. She couldn’t breathe. At a local hospital, doctors intubated her, induced a coma, and helicoptered her to Temple University Hospital in Philadelphia.
Most people with flu get well in a few days. But in rare cases, like Lisa’s, the immune system inflicts far more damage than the initial flu virus. Her lungs became swollen and inflamed, hardening like cement and losing their elasticity. She literally couldn’t breathe in and out.
This condition, Acute Respiratory Distress Syndrome, is often fatal.
Lisa landed in Temple’s 28-bed respiratory intensive care unit.
Doctors tried everything.
Lisa was sedated and paralyzed. Any movement consumed the little oxygen in her blood, depriving the brain.
They adjusted her ventilator constantly and with extreme care because parts of her lung had scarred and weakened.
“Imagine the inside of her lungs as fragile as wet tissue paper,” said Dr. Erin Narewski, a pulmonary and critical care doctor caring for Lisa. “And it’s very easy to just blow that apart with the pressure from the ventilator.”
Doctors also tried a RotoProne bed. Lisa was strapped in and rotated, spending most of her time on her stomach, allowing the back of the lungs slightly more room to expand.
“The bed is so big we can’t even get in the room,” Lisa’s older sister, Stephanie Bergner, wrote on April 24 in a journal she kept. “We are sitting in chairs across the hall from the room, we can’t even see her this bed is so big and bulky.”
Doctors in late April also tried ECMO, extracorporeal membrane oxygenation, “in her case, a method of last resort,” Dr. Narewski said.
A tube as thick as her thumb was inserted into Lisa’s groin and carried blood to the machine at her bedside. ECMO exchanged carbon dioxide with oxygen and returned the blood through Lisa’s neck into a vein above her heart.
“You can imagine how easy it would be for blood to clot, or for infection to come in, or for one of these cannulas to tear the heart or a vessel, Dr. Narewski added. “It can be a risky technique. It’s something at this institution that we are becoming very good at doing.”
After five days Lisa developed high fever from infection and ECMO was stopped.
Lisa’s three children and her sisters and her brothers and her mother would sit in vigil at her bedside. Her youngest child, Frankie, 15, would hold her hand and weep.
There were so many doctors coming and going, and they were so busy, they didn’t get to know any of them very well. A couple of residents did take the time to explain things. The news was never good.
Attending physicians like Dr. Narewski rotate through the ICU for a week at a time. So many of the Temple pulmonology and critical care doctors had gotten very familiar with Lisa’s case.
After about six weeks, doctors worried that the likelihood that Lisa would survive was becoming very slim, and if she did survive, the chance that she’d ever get off a ventilator, out of bed, or be herself was slimmer still.
“I and most of the team didn’t believe she could survive this,” said Dr. Yaniv Dotan, a pulmonary and critical care fellow.
Dr. Narewski and her peers know the very same tools that save lives in the ICU can also inflict great suffering.
“Whenever there’s a patient who is so ill, and has gone so far beyond the point where we can easily imagine a recovery, we get really worried,” Dr. Narewski said. “Is this person going to make it? Am I coming here to help someone and instead causing suffering? No doctor wants that for a patient.”
In Lisa’s case, doctors thought it was time for the family to at least consider stopping all aggressive treatments, controlling her pain, and letting her die peacefully.
“Our faculty and staff agreed that comfort measures should be offered to the family,” said Dr. Narewski.
It might be enormously painful for a family to hear the truth, especially the family of a 43-year-old woman with teenage children who had been relatively healthy and working prior to this crisis, but Dr. Narewski felt it was enormously important.
“If we are not communicating in a respectful, open, honest and evidence-based way with families about what’s going on,” Dr. Narewski said, “we are doing a grand disservice. If we don’t give them a choice, then they can’t make one.”
“Doctors cannot and should not make these decisions,” Dr. Narewski added. “We wish only to give family members the information so that they can make a choice. I am never going to sleep a night through if I have to choose this for people.”
Doctors met with Lisa’s sisters, children, mother and brothers on May 23.
They were compassionate but clear in their prognosis.
Stephanie writing in her journal that night distilled the message into language no physician would ever use:
“They want my mom to make the decision to stop further medical intervention for Lisa. I asked does this mean pulling the plug and it means just that.”
Stephanie had been driving herself crazy, staying up half the night every night searching the internet for solutions, remedies, options for her sister. She had found encouragement from an ARDS support group, which said in rare cases patients get better after 12 to 15 weeks.
“We are definitely going to wait a bit longer and not give up so soon,” Stephanie continued in her journal. “Lisa is on several prayer chains and there are many that go in and pray over her.”
Dr. Mary Kraemer, a member of Temple’s palliative care team, attended the meeting with Lisa’s family.
“It was brave to at least let the family know that this exists and that we’re thinking this would be reasonable,” Kraemer said. “A lot of times no one will say that. Because they’re on the one trajectory: die fighting.
“I think that kind of truth-telling is very appropriate,” Dr. Kraemer added.
“And the family, thank goodness, they told their truth, that they wanted and that Lisa would want to keep going.”
The very next day, May 24, Stephanie wrote: “Still no change. ARDS support group says don’t give up but it’s hard to see her like this. She has scars on her face from Rotoprone bed.”
Five days later: “It really looked like her heart was going to beat out of her chest. She looks so bad her oxygen keeps dropping. Doctors keep coming in her room and her nurse never leaves.”
On June 17: “Lisa had a lung collapse today, they are going to insert a tube into her chest to get the lung back up.”
On June 18: “Lisa’s other lung collapsed today.”
Dr. Narewski was back to the ICU overseeing Lisa’s care.
“We agonized for her, and for her family,” Dr. Narewski recalled. “We were worried both that the family had made the right decision and that we weren’t going to be able to keep her alive, or that the family had made a decision that would sadly prolong her suffering. We were terrified of both.”
On June 22, doctors put Lisa back on ECMO a second time, which is almost unprecedented. Once is rare.
On July 2, 77 days after Lisa’s arrival by helicopter, her mother and sister were outside Lisa’s room. Dr. Dotan saw them. “He seriously came running down the hall,” Stephanie recalled.
He had good news.
“We took her off the ECMO machine today,” he said. “Things are improving.”
A week later, on July 11, Stephanie wrote: “For the first time since April 15, mommy was able to hear Lisa talk.”
“Against all odds, she survived,” said Dr. Dotan. “It’s amazing.”
Asked for an explanation, he replied: “You know, it’s medicine. We can’t explain exactly the mechanisms. I guess her biology was stronger than the inflammation, so she healed herself — with our help of course.”
“Eventually, she stopped having complications,” added Dr. Narewski. “Her pneumonias were treated. The ongoing cycle of inflammation after inflammation resolved, to the point she was able to breathe on her own. But that was just luck. And it was the barest margin of luck.”
The family has its own theory.
Stephanie has a grandson — Lisa’s great nephew — named Jayden, age 9, who came often with the family. He had heard about lady bugs being a good luck charm, and he started collecting them.
He rescued his first one in a swimming pool just before Lisa improved.
“Lady bugs are lucky and I think that made her health better,” said Jayden.
Slowly, Lisa began to recover on the sixth floor.
Entries in Stephanie’s journal:
“07/27/2016 — Physical Therapy had her standing today…”
“08/04/2016 — Lisa walked 7 steps today.”
“08/23/2016 — Lisa is rolling herself around the hospital in a wheel chair.”
Out her hospital window, Lisa watched the helicopter land. Her family explained that’s how she arrived, how close she’d been to dying.
Doctors explained to Lisa that a seasonal flu shot likely would have prevented her from getting so sick. She promised them she’d get one every year from now on.
“It humbles me to remember that although that we are giving patients and families the best advice that we can,” said Dr. Narewski, “we never know anything 100 percent. There’s a subset of patients who improve. And we can never forget that, even though we see so much death and so much suffering.”
Stephanie, Lisa’s sister, understands why the hospital offered comfort care.
“I feel like that’s what they know,” she said. “I don’t have any bad feelings. They were really, really wonderful to my sister.”
Lisa’s last afternoon, August 25, was a parade of goodbyes.
“Take care,” said Dr. Dotan. “You’ve been amazing.”
Lisa started crying.
“I don’t want to leave,” she said. “But I have to. My friends are here.”
More than 100 doctors, nurses, respiratory therapists, physical therapists, nutritionists and pharmacists helped in her care.
Lisa gave flowers to Debra Gillman, a nurse practitioner.
“I’ll be passing by your room and I’ll be missing you,” Gillman said. “But that’s a good missing.”
Beena Joseph, a nurse, came in for a hug. “You belong to the Temple family,” Joseph said.
Dr. Narewski kneeled down, took Lisa’s hand.
“I cared for you for a couple weeks in the ICU when you were at your very, very sickest,” the doctor said. “I know you pretty well, but not the real you.”
Dr. Narewski had rotated out of the ICU before Lisa woke up. The two had never met.
“You’ve got a wonderful family,” Dr. Narewski said. “They never gave up on you. Not once. Even when we talked with them about our concerns that you may not make it, we were worried that you wouldn’t, they said you keep the full press going.”
“Would you sign my book?” Lisa asked.
“I’d love to sign your book.”
Dr. Narewski wrote: “We are so proud of your resilience and tenacity. You inspire us all. And help us remember why we fight so hard for every patient.”
The transport team had arrived. Lisa was off to a rehabilitation hospital in New Jersey.
She had been at Temple for 131 days.
As EMT’s wheeled the gurney down the hall, Lisa was facing backward, toward her family and nurses. Tears rolled down her scarred cheeks.
She blew them all a kiss. Then disappeared around the corner.
After a month in rehab, Lisa is home now, off oxygen. She’s using a walker just to be safe. She said she feels like herself, although slower and weaker. She’s looking forward to going back to her diner, sitting in a booth, and ordering eggs over medium, her favorite.
And then maybe taking a trip to the casinos.
Who knows, she may get lucky.
Michael Vitez, winner of the 1997 Pulitzer Prize for Explanatory Journalism at The Philadelphia Inquirer, is the director of narrative medicine at the Lewis Katz School of Medicine at Temple University. Michael.firstname.lastname@example.org