The Critical Role Family Plays in Patient Care

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With COVID comes solitude and separation. In a hospital setting it often means no family or friends. This has had profound impacts on care and reminds me of why it’s so important to have loved ones near. Not just for the traditional reason: because patients and their loved ones need emotional support. But because the information family and friends carry can be crucial to care.

I think we all have stories where patients have been away from their families for months. We have seen patients go through more than 10 different medical teams in one hospitalization. Inevitably, there are situations where key pieces of information are lost in those transitions. Usually if this happens, family can help provide much needed continuity. But what happens when loved ones are not around? When patients are too sick to advocate for themselves, who is left to serve as that safety net?

Try as we might, medical teams are separated from each other in time and space as we care for patients. We make decisions based on the information we have at hand – which all too often does not include the recommendations of another team discussing the same patient on another floor.

This is not the level of care we strive to give our patients. Nor is it what they deserve.

So when families can not be in the room, at the bedside, advocating for their loved one, what do we do? We resort to phone calls. Or at least we try to. The sad reality is that it is not always possible to talk to every family for every patient every day. Even when we want to.

I’m conflicted as I write this. As a human and as a family member, I know I would want and appreciate a call every day. In fact, I would need it for my sanity. Especially if I could not be in the hospital sitting by the bed. As a front line hospitalist and also as a teaching attending overseeing a team, I speak from experience when I say that it is not always possible. We try to prioritize patients who are more sick, have changing plans, or unclear trajectories. We work as a team to share the responsibility of calling families.

But what happens when we think we have the whole story for a patient, and in fact we don’t? When that patient’s family doesn’t get a call because we thought we were on the right track but weren’t?

I assumed the care of one such patient recently. The handoff I was given was that he was admitted for heart failure due to insufficient dialysis. As I stepped into the situation, it was mentioned – almost as an afterthought – that he was on medication to raise his blood pressure. I asked why, and was told this was a “long-standing” problem. When I reviewed dozens upon dozens of progress notes in his library-sized chart, they confirmed that story. So we followed the course.

We didn’t know we were missing a key piece of information. That his low blood pressure was actually new in the last 2 months. It was the whole reason he was in and out of the hospital during that time. The new medication was addressing a symptom to a problem that was not yet solved.

I only learned all of this after I spoke to the patient’s wife, several days after I started on service. As she told me this history, his symptoms over the prior days meant something completely different to me. It made my suspicion for a hidden infection much higher. Armed with this new information, we looked even harder and with more atypical tests for an infection – which we ultimately found hiding in his abdomen. After a course of strong antibiotics, his symptoms improved and he was able to go home almost off the medication.

It haunts me how different his trajectory may have been had I not spoken to his wife that evening. What makes it worse, is that he was not one of the patients high on my list as an unknown that I needed more information on.

The reality is we simply don’t know what we don’t know. Patients and their families must be included as part of the care team in a more integrated fashion so we can have the whole picture.

I unfortunately don’t have all the answers for how to address this challenge. But I am confident it is one we can work to solve with process and technology. Fragmented teams, poorly designed information systems, and now separation from family are not likely to go away anytime soon. But what we can do, is be aware of and recognize these gaps. We can proactively work to ask why someone has a symptom or an issue. And perhaps most simply, we can prioritize talking to family. Asking them, and the patient: what is your goal for this hospitalization? What is the problem that is most concerning you, and are we addressing it? And then work as a team towards reaching those goals.