5 Lessons Doctors Could Learn From the Children's Hospital
The rideshare driver picked me up in front of the children’s hospital. As soon as we pulled away from the curb, he started chatting. Normally I like a good conversation, but I’d just completed a four-hour IVIG infusion — treatment for primary immune deficiency — and I had a splitting headache. I had my sunglasses on to block out the sunlight, and all I wanted was to rest quietly until I got home.
“I just had a painful treatment and I need to rest,” I finally said. “I’m not trying to be rude, but I don’t want to talk right now.”
”You’re a patient there?” the driver asked. “Sorry. I thought you were visiting someone.”
His surprise was understandable. Adult patients at children’s hospitals might not be the most common thing in the world. It’s taken me a while to get my head around it myself, if I’m honest. The first time I had an appointment there, I was reminded of the “Friends” episode where the group found out Ross was still being treated by his pediatrician. I laughed about it with my own friends.
In “Friends” it was used as a punchline, but there’s actually a growing trend for younger people to remain with their childhood doctors for extended periods of time. The reasons such patients give are manifold, but often center around the fact that they feel that their pediatricians treat them with more compassion and attentiveness.
There are also patients like me, who are followed by pediatric specialists because those individuals are actively studying our illnesses and have the most experience in treating us. My lab results were getting so confusing that my primary care physician, hematologist, immunologist, rheumatologist and infectious disease specialist — all of whom were in adult medicine — could not decode them. My immunologist finally recommended that I see one of the experts. For primary immune deficiency, that has required becoming a patient at the local children’s hospital, where there are several specialists actively doing research, tracking cases, publishing papers and speaking at PI conferences.
I’m not alone; I’ve been told that about half of the patients in my immunology clinic at the children’s hospital are adults. Some have been treated there since they were kids themselves; others are like me and have come in later. What we all have in common is that it was decided that we needed to be treated by the experts in the field. Perhaps it’s good that we’re all in one place; it makes it easier for our cases to be followed and documented.
Now that I’ve been a patient at the children’s hospital for more than a year, what stands out in my mind is just how many things they do right compared to the adult medicine clinics I’ve attended. I have several adult medicine specialists who are kind, compassionate and have excellent bedside manners, but I’ve also found myself wishing that some of the other physicians I’ve seen could come to the children’s hospital and take a few notes.
As a disclaimer, I’m sure not every children’s hospital is wonderful, and I’ve also encountered adult medicine physicians and facilities who are great. These are the things that have impressed me in my own personal experiences.
1. They make an effort to be compassionate and acknowledge the stresses of treatment.
Procedures, injuries and illnesses often are painful and scary whether a patient is 6, 36 or 86, but many medical professionals seem to expect adult patients to be stoic and not express pain, stress or fear. I’ve seen doctors and nurses react with impatience, disdain and even anger when adult patients have cried or showed other signs of stress.
I still remember my latest operation. It was for a knee injury, not for PI, and it took place in an outpatient surgical facility. My anxiety was at a fever pitch and I was in tears before anyone even set an IV in the pre-op area. The nurse who came in to see why I was crying literally rolled her eyes and snapped at me. She also confused me with another patient who was having an endoscopy, and acted as though I was a fool for thinking I was going to be having orthopedic surgery (which I was) under general anesthesia (that too).
When she came back later to set an IV, she roughly grabbed my arm without telling me what she was going to do. It was extremely painful and I ended up with damage to the vein that took months to heal. When I was taken to the operating room, the nurse holding the IV bag of fluids walked so quickly he nearly pulled the line from my hand. After I woke up from surgery, someone came into my recovery cubicle to toss a juice box in my direction and remove the IV and never checked on me again.
At the children’s hospital they’ve been gentle, they’ve been willing to talk to distract me while they’re working, and they’ve taped heat packs to my hand to assuage the pain of the IV set. One awful day it took three tries, one blown vein and a bruise that covered half my forearm before they were successful, and I was sobbing by the time they made the third attempt. They let me take a short break and even offered a hand to hold. During my IVIG infusions the nurses stick their heads into my room every half hour or so, and when I’ve had questions about my treatment they have been happy to answer.
I’m sure there are doctors who would roll their eyes at that and would maintain adults should just suck it up and deal. Here’s the thing — we already do. An IV is an IV regardless of where it’s set. Nothing’s going to change that. However, the fact that the children’s hospital staff takes the time to show compassion makes a world of difference. They don’t get frustrated or angry or think it’s foolish if a patient is crying; they understand that when a procedure is stressful or painful, sometimes you just need to cry.
2. They have better resources for patients’ well-being.
Years ago I looked after a relative who had major surgery. I have vivid memories of calling one hospital extension after the next, talking to charge nurses, attending physicians, social workers and patient advocates trying to explain my relative was having PTSD-related flashbacks and needed help beyond what I could do. In the three weeks my loved one was in the hospital, not a single social worker or psychologist came to work with them and their PTSD was treated with impatience by some members of the staff. When they went home, nobody followed up with them to see how they were doing. And that was at a veterans’ hospital, to boot.
At the children’s hospital, I called the resource center and told them I wasn’t coping well with treatment. The next time I was at the hospital for an infusion, the department’s social worker paid me a personal visit. While most of the social work resources at the hospital were understandably for pediatric patients, she was still able to offer me a list of possible resources. She also arranged a visit for me with one of the hospital’s wonderful therapy dogs. The therapy dogs were available for patients of all ages, and meeting with a calm, sweet puppy before my infusion was truly comforting.
The immunology department also has brochures for the Immune Deficiency Foundation, magazines about IVIG and PI and other resources for support outside of the hospital. It’s a marked difference from what I find in the waiting rooms for other doctors, where there’s usually nothing more than an endless array of pharmaceutical pamphlets or tabloids.
3. My treatment is more of a collaborative effort.
The physicians at the children’s hospital have made calls and emails to my other specialists to coordinate my care. They have worked with me to find solutions to treatment issues. It’s not uncommon for the doctor to spend an entire hour talking over various issues until we’ve figured something out. And they’ve budgeted the time to do that.
That’s a marked contrast to some of the adult specialists I’ve seen. I still remember one pulmonologist who literally didn’t stop moving; he came into the exam room, said three sentences and swept out again, and that was the appointment he was charging my insurance for. I had to follow him down the hallway to get a question answered.
4. They care about caregivers and family members.
Every time I’m at the children’s hospital I see fliers for events, support groups and programs for the parents or siblings of patients. There’s drop-in T’ai Chi and meditation for both caregivers and hospital employees. There’s also a resource center where caregivers can get their questions answered, use a computer or copier, or simply relax on the couches. There is also a quiet garden where one can walk in the sunshine.
The children’s hospital seems to understand that when a person is sick, it can be difficult for their loved ones to handle. They also seem to take tangible steps to help mitigate that stress, at least a little.
5. They make tangible efforts to make the space more welcoming and less stressful.
One day I had to get blood drawn, and the nurse sent me down to the hospital’s phlebotomy unit. The first thing I noticed was that the blood draw chairs were double the size I was used to seeing. That could accommodate a wide variety of patients — a parent holding a child, someone who wanted a parent or friend to sit next to them, someone who was larger, or someone with a cast or brace that might be difficult to maneuver comfortably into a standard chair.
The tests that are ordered for me tend to require a lot of blood, and if the phlebotomist is drawing 10 or 12 vials, it hurts less for me to have a butterfly needle. With a butterfly, when the phlebotomist changes tubes, they’re not moving the needle around in my arm each time. As a result, it’s less painful and I don’t bruise as much. My personal cut-off is five vials; if it’s more than that, I ask for the butterfly.
When I’ve had blood drawn in adult collection centers, the nurses have occasionally seemed put off by that request, even when the orders call for them to take a lot of tubes. I’ve been told that butterfly needles are more expensive and can be more difficult to use; perhaps that’s part of it. At the children’s hospital, however, nobody thought twice about it because they use the smaller needles by default.
There are other things the children’s hospital does to make treatments easier. Numbing spray and a check with the vein finder before IVs get set. Heat packs afterward. Blankets, comfortable chairs and privacy during infusions. Everything from the color of the waiting room furniture to the artwork on the walls seems designed to offer comfort and reassurance.
When I was at the hospital for an infusion on Halloween, every single employee, from the cashier in the cafe to the doctors, was dressed up. We patients were also encouraged to wear costumes if we were coming to the hospital for treatment that day (I wore my Glinda the Good Witch crown and a lot of sparkly makeup and clothing. I figured she might leave her ball gown at home if she were going for IVIG).
Getting procedures and treatments isn’t exactly pleasant for many of us. When medical facilities and staff go the distance to make the experience less frightening, more compassionate and less intimidating, it makes a substantial difference. And I wish that our adult physicians and hospitals would learn some tactics from their peers in pediatrics to accomplish this.
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