Speak now

Patients and their families are always being told to speak up if they have questions or if they’re concerned something isn’t right. The phrase “speak up” is used so often, it has become synonymous with patient advocacy.

There’s another piece to this equation, though: the listener. What’s the good of speaking up if health care professionals don’t welcome the message?

I came across an interesting study in the current issue of the British Medical Journal that explores this very question. The authors conducted individual interviews and focus group sessions to find out what happened when patients spoke up about safety concerns and the communication dynamics surrounding the conversation. What the findings suggest is that this kind of self-advocacy often is easier said than done.

Women with breast cancer who participated in one of the focus groups described the self-doubt that crept in when they reported symptoms or problems that were dismissed:

If you have got something happening, whether it’s you’re in discomfort, pain or you feel sick or whatever, especially if you get nothing back when you tell that person, “I feel sick,” if there’s no acknowledgement of your pain or discomfort, I think personally I feel left [thinking] “Well, maybe I shouldn’t,” “Maybe I should be able to tolerate this pain” or, do you know what I mean? It’s that feedback that you don’t get. So you’re left with it, basically. And then that affects the next time you want to speak up and ask them again, you know?

Patients worried that voicing questions or concerns would have repercussions for their care. One focus group participant told the researchers, “I think if you complain, your number’s marked and you’re a difficult patient.”

Whether patients spoke up also seemed to depend on their seriousness of their concern and their perceptions of the staff’s workload and attitudes. The researchers noted patients were less likely to say something “when they thought other patients had more pressing needs and staff were very busy or didn’t want to be ‘bothered’ by or with patients.” Past experiences made a difference as well. Patients who’d previously been shot down or ignored for asking nurses to wash their hands, for instance, were less confident and more reluctant to speak up, whereas patients who had an encouraging response were more likely to feel empowered.

This last point is interesting because it suggests the strong positive influence of a health care culture that welcomes patient involvement. One of the focus group interviewees, a mother whose child was hospitalized with asthma, described how much more confident she felt when her request for a nebulizer was backed up by a senior doctor.

What happened when patients spoke up and weren’t heeded? Often they had to repeat their concerns to someone else before they got action. Sometimes the encounter escalated into a confrontation, the researchers reported. But in many other cases, the patients backed down, leaving the problem unresolved.

Not surprisingly, the study’s authors conclude, “Overall, participants’ comments strongly suggest that speaking up is easier when healthcare staff give the impression of caring, having time and welcoming and supporting patients as legitimate contributors to their care.”

What’s more, campaigns urging patients to speak up and be involved in their care could backfire if health care professionals don’t respond appropriately, the authors said.

The study was conducted in Britain, so it’s hard to say whether the same results would apply in the U.S. I’ve heard American health care consumers discuss some of these same issues, though, and many of the concerns are similar – reluctance to impose on overworked health care staff, feeling undermined when their questions are dismissed, and feeling encouraged when the response is positive.

In a conversation posted at the U.S. Agency for Healthcare Research and Quality, Geri Amori, vice president for the Education Center at The Risk Management and Patient Safety Institute, recounts the experiences she had while caring for friends who were hospitalized. At one hospital, she was literally told to “go away” when she offered to make an ice pack for the patient. But at another hospital, the nurses and staff talked to her, answered her questions, invited her participation and gave her positive reinforcement. She observes that these differences are rooted in “the individual cultures of those hospitals and how welcoming they were to families.”

Perhaps the “speak up” movement would gain more strength if it also had a “listen up” component.

Photo: Wikimedia Commons

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