When my firstborn went straight from birth to the special care nursery, I had time to meet another mother of a premature baby. We were tired but never complained because our eyes didn’t miss the fact that in the far corner were the really sick babies clinging to life or, as forlorn faces disclosed, those who had succumbed to the vicissitudes of extreme prematurity.
When the time came to go home, I was relieved because our case had been simple. She, however, had turned pale. Her baby had a congenital cardiac abnormality requiring multi-stage surgery, but not yet. In the meantime, there was nothing to do but wait, and monitor the baby’s heart rate, oxygen levels, and ability to feed.
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When the doctor left, she whispered, “I am worried.”
“What if he stops breathing?”
‘The oximeter will beep if his saturations drop.”
“And what will I do then?”
“They’ll tell you.”
“How will I sleep knowing something could happen?”
“He will have lots of monitors.”
The passage of many years has done nothing to dim my memory of that cringeworthy conversation; it was not just unhelpful but focused on all the wrong things. My attempt at medical problem-solving left no room to explore her fears. She was probably experiencing guilt, fear and fatigue – I didn’t ask so I didn’t know.
I often recall our exchange when my own adult patients deemed safe for discharge return to hospital. A “failed discharge” variously refers to someone who returns within a month, a week, or even within a day of being sent home. The collective noun for such patients is “frequent flyers” but unlike airline passengers, there are no perks, only greater complications.
All patients are encouraged to return, but what’s striking is how many patients return for non-medical reasons. In other words, the infection is receding, or the wound is healing but people aren’t close to their previous level of function, physical or emotional.
Among my most elderly patients, post-discharge consternation is normal. How much fatigue is OK? Can they skip the fluid restriction on a special occasion? Where did the five new pills come from and what happened to the old ones? What if the bathroom is too far to reach?
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Modern medicine is capable of answering all these questions ahead of time and no patient should have to return to hospital for a script, a walking aid, or care coordination, but in fact it happens regularly when patients feel poorly supported at home or cannot get an appointment with their local doctor. According to one