Nicole definitely turned heads. Feathery, streaked blond hair, blue eyes, fun-loving by nature. She was a hair stylist, and even in a hospital gown could rock her look with her tattoos and her rings and her style.
Nicole had not been well for some time.
Nicole, the hair stylist rocker, was a frequent flyer, and we knew her well on Med Surg. Here’s her story and what patient-centered care means to me.
Nicole had been diagnosed almost five years earlier with idiopathic pulmonary fibrosis. Now she kept returning with lung infections that were increasingly resistant to antibiotics. She’d had lung biopsies, CTs, MRIs, and bronchoscopies. She’d been scanned, scoped, transfused and infused.
There weren’t any more tests to do. She was tired, and breathing was getting harder and harder. It took all her energy to breathe, with not much left over to eat, or talk at length. But she could speak with a flash of her blue eyes, to say she caught the joke, or disagreed with the speaker.
She was on oxygen 24 hours a day. She was losing weight, but recently she had developed swelling of the legs due to right sided heart failure. She hated having swollen calves and ankles. Of all the things she asked her doctor to fix, it was her swollen legs.
Alarmingly, now whenever she coughed, it was more like strangling, and her fingertips would almost instantly turn blue. We’d quickly put her on a non-rebreather and pray that this wasn’t the day and the time. She’d slowly recover, and we’d feel like we dodged the bullet once more.
She had decided not to go on a ventilator at the end. She had already refused dialysis once during a crisis.
We skipped her night vital signs whenever possible to allow her to sleep six hours. Often she wanted to sleep propped up in the recliner chair, while her fiancee, Brad, slept in the bed.
Unorthodox, maybe, but we were more than happy to accommodate them. One early morning I peeked in and they were in the bed together, spooning. They were both snoring lightly, in rhythm. He had his arms around her with her back into him. I wondered if she felt bony to him. It was sad and happy.
Nicole had one thing left she wanted. She wanted to get married. Could that possibly happen in the hospital?
It had never been done, but..there was a full-time chaplain, and ..why not? Our nurse manager championed the idea, and worked out all the administrative details.
It was decided they could get married in the hospital. The date was set.
Nicole and Brad had limited finances, so without ado, some nurses got together and found a wedding gown on Ebay. Ashley, the Respiratory Therapist, offered to provide the music. Her pulmonologist chipped in generously. There’s nothing like women planning a wedding, and this wedding was no different.
The day before, we got Nicole up in the hall to practice walking in her gown. She used a walker, and a nurse walked behind her pushing her oxygen tank and a wheelchair just in case. She insisted on wearing heels, but she wobbled treacherously in them, so we switched them out for rubber bottomed patient socks.
The next day was the wedding day, a Saturday. It started to get exciting when a make up artist came in with her tackle box full of make up and applied Nicole’s make up. One of the nursing assistants
styled Nicole’s blonde hair in a wispy up do, with softly curling side tendrils. Panic set in when she ran short of booby pins and everyone went scrambling through lockers and purses on a bobby pin hunt.
All dressed, Nicole was wheeled down to the chapel area. Her fiancee, Brad, was there with a big surprise- he was holding their dog, Axel.
The music cued. Nicole stood with help and walked slowly but steadily the short distance towards Brad and Axel. The sleeves of her gown covered her PICC line, and only her nasal prongs for oxygen said “patient”.
Our own Chaplain Rick conducted the ceremony. He knew to keep it short, and he left out “until death do us part.” Brad put a simple gold band on her finger, and they kissed.
Afterwards, sparkling apple cider and Ensure on ice was passed around in styrofoam cups. One talented nurse had even made red velvet cupcakes with edible swans on top.
Pictures were taken. For a few minutes, we were all transported away from our duties that awaited upstairs and swept up in the poignancy of the moment. No one wanted to return to work.
But soon Nicole was fatigued and she and Brad retired to the bridal suite, room 4112, where rose petals were strewn on the bed.
At five pm, the door was still closed and the nursing assistant cheerfully charted “vital signs refused”.
Incredibly, after the wedding, Nicole rallied for a few days. She had energy, she had the “look-good”, and we thought she may get to go home. Then her white count started climbing again.
It wasn’t long afterwards that Nicole went downhill fast. We kept her as comfortable as possible, with ice chips, and morphine, and pillows for her to rest on. Brad and the staff partnered in her care.
She never made it home.
Did we deliver patient centered care? Nicole would never fill out a patient satisfaction survey. But if she did, I hope she would say we gave her the care she needed at the time she needed it, the way she wanted it.
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Until next time friend,