As a medical educator in a hospital setting, I often tell first-year medical students about disparities in health care and about the vastly different quality of care that hospitals deliver, depending on their resources.
I tell my students how important it is to advocate for patients, to learn to navigate the healthcare system and to work respectfully with health professionals in order to get optimal care for your patients.
When my own son was hospitalized, I had an opportunity to put my teachings into practice, and found them wanting.
It was a Thursday evening in early spring, the first hint of green emerging on the lawn of my suburban Connecticut home.
My son David called from Manhattan to say that he had a job interview the next day; he was going for a run before settling down to prepare.
I sat on the deck, taking in the twilight and feeling hopeful about the future.
Five hours later, my husband Leo and I were hurrying to a Manhattan emergency room. The police had found David beaten and bleeding in Riverside Park. The park had seen more gang activity lately, and they thought David had been victimized as part of a gang-initiation rite.
When we got to the ER, we found David’s wife, Sarah, and her father there.
The harsh lights revealed how horribly David was injured. Bandages swathed his head, bruises mottled his face and arms, and blood was caked in his hair and on his body.
Although he was conscious, he couldn’t speak. Neither could we. As I stroked his arm, tears rolled down his cheeks.
At 2:00 AM, David was taken to his hospital room, and we left for his apartment, a few blocks away.
Little did we know what battles lay ahead.
Arriving at the hospital Friday morning, we were told to wait in the family lounge, where we found grimy, broken chairs strewn with fast-food wrappings. A gurney with bedding took up much of the space. There was worse to come.
That afternoon, we met the oral maxillofacial surgeon. (We missed a morning meeting; the nurse forgot to summon us from the lounge.)
David’s jaw was smashed into fragments, the surgeon told us. He thought David might have been beaten with a metal pipe. Extensive surgery was needed; it was scheduled for the following Monday morning.
Listening, I felt growing misgivings. This hospital served an underprivileged population; given what we’d already seen, I worried that David might get subpar care.
A surgeon at my Connecticut workplace had offered to take David as his patient, so I asked David and Sarah whether they wanted him to be transferred.
In the end, they decided against it. David wanted to stay close to his friends and professors in his Manhattan graduate program, and Sarah needed to maintain her job.
The ensuing weekend offered many opportunities to regret that decision.
For instance, the hospital’s public bathroom was smeared with feces. Despite our complaints, it was never cleaned.
I saw David’s phlebotomists come and go, leaving behind used plastic tourniquets and tubing strewn on his bed. He received so little personal attention that, thirty-six hours after his admission, dried blood still stained his hands. Finally, Leo filled a pan with soapy water and washed it away himself.
Then there was the issue of pain control. David’s nurses seemed highly ambivalent about it: they consistently delayed administering his medication until the pain became unbearable. They stopped answering David’s call bell, and when we approached the nursing station, they would ignore us.
Sarah, normally sweet and personable, developed a pit-bull tenacity in her attempts to get David his medications; but her efforts had little effect. In fact, the staff members expressed so much concern about possible opiate dependency that even I started to worry.
Even when David’s physician told them that David should get his pain medications on time, nothing changed. The doctor’s slumped posture telegraphed that he felt as frustrated as we did.
On Monday morning, Leo and I joined Sarah and her father at the hospital to await David’s surgery, which was delayed until 4:00pm. We left for a while, returning at 10:00pm to check on David’s status.
I approached the guard. “Sir, could you please direct us to the lounge where we can wait for news of our son’s surgery?”
“There’s no room,” he said. “You need to sit in the lobby.”
This struck me as highly unusual. “Can you double-check that with a supervisor?” I asked.
“I don’t know any supervisor, and I don’t have anyone to call,” he said. “Wait here.”
I felt too worn down to pursue the issue. We settled down in the lobby.
Soon after, we saw two patients wearing hospital johnnies and ID wristbands walk across the lobby and out the door; they returned shortly, carrying take-out food.
Finally we were admitted to the recovery room.
David lay there swathed in bandages, his jawbones secured with titanium rods. Again, when he heard our voices, tears trickled down his face.
Three days later, he was discharged.
“I believe he’ll get better care at home,” the surgeon said.
Over the next several months, David’s wounds gradually healed. He advanced from clear liquids to regular food. His face remained swollen, and to this day his teeth are crooked and poorly spaced.
When he became strong enough to venture out onto the streets and subways, he still felt fearful, so Leo went with him several times to help him ease back into independent travel.
David was able to graduate, and he and Sarah are now pursuing careers in Brooklyn. In many respects, life has returned to normal.
But I am still trying to make sense of what happened.
David identified three out of the five suspected perpetrators in a police lineup, and they were charged with assault.
Although David’s doctor spent the better part of two days testifying as to the life-threatening nature of his injuries, the boys got probation. We believe that the justice system failed David, but I know that many view this as simply the nature of the juvenile legal system.
What I really can’t come to terms with is David’s hospital experience.
Looking back, I find it startling that our personal presence made little or no difference to his quality of care. I know that staff often consider involved family members “pushy,” but it still shocks me that our efforts to get David’s needs met, especially for pain control, went unheeded.
Shortly after David’s discharge, Leo and I wrote letters of complaint to several agencies, including the NYC Department of Health and the NYC Health and Hospitals Corporation.
Months later, the hospital administrators arranged to meet with David, Sarah, Leo and myself.
One after another, we described our experiences.
David’s words still haunt me: “I was the victim of a horrible crime, but I was also a victim of a healthcare system too overburdened and inadequate to give patients a safe environment or even minimally acceptable care.”
In response, the administrators described their plans for a comprehensive pain-control plan. They were addressing the housekeeping issues, too, they confided; the nurse who’d slept on the gurney in the family lounge had been fired.
It was good to hear that they wanted to improve the hospital’s conditions. Still, we’ll never know if they really did.
In the wake of this experience, I’ve felt tremendous gratitude for David’s survival and recovery, and for the support offered by so many family members, friends and medical professionals. However, I’ve also mulled over some harsh and unwelcome lessons.
I’ve learned that it doesn’t always help to know how to navigate the system, and that sometimes advocating for a patient, however respectfully, brings no improvement. When you’re in a setting unable to provide patients with the care they deserve, when the system itself is too deeply broken, no amount of knowledge makes a difference.
Nowadays, when teaching medical students, I still highlight how healthcare disparities can affect patients’ care. I still stress the importance of being an advocate for your patients, of striving to give them the best care possible.
But now I know, too, what can happen when reality gets in the way.
Karen Libertoff Harrington is a social worker. This piece was originally published in Pulse — voices from the heart of medicine, and is reprinted with permission.