Viewing healthcare through a family caregiver's eyes

January 12th, 2015

Although my professional life is all about editing and creating healthcare publications, I rarely get the chance to make field trips. Last weekend I did, unexpectedly: I spent two days in a facility out of state, where my mother was recovering from emergency knee surgery.

I wasn’t there as an editor or a reporter, but as a son looking out for his mom. Even so, it’s hard to stop thinking like a journalist when you’re observing processes you’ve been covering for one publication or another for the last fifteen years. It’s hard not to be curious about the discharge plan and how it was put together and when, and what exactly was on the clinical pathway that guided my mother’s care. It was hard to ignore the large display in the hospital cafeteria that emphasized the facility’s goal of cutting its readmission rates for AMI, heart failure and pneumonia. These are the kinds of things I write about, after all.

I tried not to pester people, although I watched like a hawk to make sure everyone who entered my mother’s room washed their hands and explained, for her benefit, exactly what they were doing and why.

Mostly, I just sat with her and did my best to deal with things she was too tired or stressed out to deal with. I sat with her through the discharge instructions and made careful notes about who to call and what to expect during home care and physical therapy. It was a lot to take in and, despite my experience covering healthcare this long, I think I might have had some trouble processing it all if I’d been in mother’s shoes — lying in a hospital bed with a bum knee, staring at the prospect of three weeks of twice-daily infusions, knowing she’d have to get her walker out of the garage again and not be entirely self-sufficient for a while. I can’t imagine having to cope with all that alone.

I think family caregivers sometimes get a bad rap, but I’ve heard enough stories from contacts in the field to understand why. Family members can be unnecessarily combative and overly emotional; some selfishly put their own desires above the needs of the patient; and some, as well-meaning as they might be, simply get in the way.

I’m sure it can be a hard call to send someone home when you haven’t had much time to thoroughly assess whether his or her support system is really up to the task. Especially when that assessment, as much as anything, can be the difference between a successful discharge and a bounce-back readmission.

Has the experience of being a patient, or the family member of a patient, changed your perception of the healthcare system? If so, how?