Storeroom 99: a place for words to support families of ICU patients
“I cannot control things around me, but I can control my thoughts about those things.” Nadia is a 38-year-old woman and her husband had a massive brain bleed 18 months ago; she talks about the anxiety of not being able to control her life: will the husband come back home soon, will his condition ever improve, or might something terrible happen again sooner or later?
Bruno says his daughter is much better now. She’s just about walking again, but when she approaches a step she panics and she shakes. A single bloody step can freak her out.
“That happened to my husband too!” Giovanna exclaims as she had just found out the answer to an impossible puzzle which has been bothering her for a long time.
Nadia, Bruno, Giovanna, and three others are caregivers of patients who survived from a critical illness; they are talking about their experiences. We asked them to do it. We do not know if this can be useful or not, but it is sure that we know little about what they had been through after the intensive care unit.
The venue of the first meeting is a teaching room in the old part of the hospital, but when we gather in front of the door, we realize that the room is still under renovation and inaccessible. “Oh, God!” I think trying to not panic. In that moment the ICU matron is crossing the corridor toward the director’s office. She notices my miserable expression:
“Cheer up doctor, you can use the storeroom for your meeting, if you like,” she says.
“What storeroom?” I ask and I’m sure she is joking (she likes incomprehensible jokes).
“Storeroom 99; it’s still half empty. Get chairs from the ICU and go there: it’s better than the aisle.”
So our project starts. In a storeroom (oh, boy!). The location is better than expected, though: big windows, well lit, a good view of the trees in the hospital backyard, some scattered boxes, a bookshelf with medicine textbooks, and one theatrical plastic skull.
The attendants do not seem bothered by the room issue. We explain the project: no treatments, no clinical examinations, no reviews of medical records, only space and time to share experiences. They look at us with interest, but I can not stop thinking we are in a storeroom! Will they take us seriously?
Armando is the first to talk. He’s thrilled to share his story. He is pleased to be here and talks about his wife’s condition: “Since she’s been back home, no one from the hospital or the rehab has called,” he says. “No one asked us how we were coping. We could have been dead and no one would have cared. I was delighted when you called. At least you care about us.”
His story is full of obstacles: it’s a never-ending journey from one office to another, it’s a tiring hunt chasing information, it’s a long wait out of the clinics. The other stories are not so different; life has not been the same since the ICU and even after, when treatments succeeded and miracles happened, nothing came back the same.
For us, ICU practitioners, discharging the patient alive is the end of the task, the top of the mountain, but most of the time, for families and patients, it is only the start of a climb that never ends. There’s a growing body of evidence about post-intensive care syndrome; we know surviving from ICU does not mean being safe and sound. The burden of the critical illness often fades out but never disappears. Relatives sometime struggle to care for their loved ones; they fight against the lack of resources and knowledge. But what can we do about it? Problems seem to be so complex and follow-up clinics do not improve the patients’ outcome or reduce the probability of a readmission. So what? Is it useless? Who will invest resources in something that does not work?
On that first day we went on and on with stories; no tests, no clinical examinations, no medical notes. Just stories. We were satisfied, the caregivers and the ICU practitioners, and we met again.
Now “storeroom 99”, as we named the group, has been a gathering for the past 6 months. It’s part of the follow-up clinic, a new resource. Now we meet in the new teaching room of the hospital, we invite “experts” to discuss issues, caregivers come and share their experiences, sometimes even patients come. We talk a lot.
Without numbers, without statistics and evidence-based stuff, medicine does not seem right; it’s incomplete, awkward. How can we get resources if we can not prove that it works? Well, we know talking is a good thing, do we not? Words can heal. Relationships are crucial for a healthy and happy life. Sometimes this kind of support is much better than a hundred medications; careful listening is more effective than a disability score. And we can give this support; because we were there, in the storm, we knew what happened to our patients; we witnessed their fight and their wounds. This is our part of the story, and when we share it, we help them to make sense of dodgy memories, to solve puzzling holes in their life. That’s therapy. We think ICU doctors and nurses could do so much good if they spent time with their patients and their families, after the battle, after the nightmare. Words and relationships can weave a very effective net, help them get over the post-ICU syndrome, give support and relief to families, create connections. We do not have proof it works. No numbers, sorry! But do we need the chemical formula of a strawberry to taste its sweetness?
Marco Vergano and Esther Munge for their precious suggestions.
Compliance with ethical standards
Conflicts of interest
This manuscript has not been published elsewhere and is not submitted simultaneously for publication elsewhere. There are no relevant conflicts of interest.