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Caring for the whole person

“Now what’s wrong with your dad?” I was asked for the seventh time that day. 

I couldn’t believe it. We had been at the hospital for over six hours at that point. My dad hadn’t been doing so well. Specialist after specialist passed us along with worried faces but saying nothing. Finally, we came to the specialist who put words to the looks: pneumonia, bad pneumonia, your-dad-might-be-dead-tomorrow-pneumonia.

By this point my dad—whose body had been through a lot in the past few months with a bone marrow transplant and the chemo and total-body irradiation that preceded it—was almost completely out of it: hairless, skin sagging from all the weight he’d lost, pale as a ghost, barely able to pick his head up off his shoulders let alone talk to most of the doctors we’d seen. It was left to me to navigate our way through the hospital system, and, now, to tell the staff in the special isolation ward they sent us to just why he was there—again.

To the hospital, my dad was a patient, an individual with a problem that they were tasked with solving. It didn’t matter how long we waited; it didn’t matter how many times we had to repeat the same information; it didn’t seem to matter to them how scared I was or how much the whole process took out of him. Such, unfortunately, is too many people’s experience with intensive medical care.

That’s why it’s so exciting to hear about a new experiment in patient care going on in four hospitals in the US. The experiment seeks to make fundamental changes in the way intensive care units (ICUs) manage their work and their relationships with their patients; with the goal of improving patients’ experience and the level of care they receive. The hospitals say they hope to reduce the occurrence of “preventable harms” to patients, and they’re ranking loss of dignity and respect at the same level of harm as blood clots and infections.

Nurses and doctors at these hospitals now take the time to get to know the patients and their families, and they share this information with each other via a system of specially designed iPads. They ask questions like, “What is the most important thing we can do for you today?” And they listen, pass along, and heed patient preferences for their care. In short, they look at patients as people and not just medical puzzles to be solved.

We’re hearing a lot lately about the dignity of the seriously ill. Intensive medical care can be extremely invasive, impersonal, and sometimes downright painful. If this US experiment goes well, however, such experiences may become things of the past. I look forward to initiatives like this giving a solid injection of compassionate humanity to the heroic work of our medical professionals; preserving the dignity of their patients by caring for them as whole people. 

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