Dear Editor,
After my husband suffered a stroke, we expected our greatest challenge would be recovery. We never imagined that one of our greatest obstacles would become the healthcare system itself, particularly from an organization designated as a comprehensive stroke center.
We sought follow-up care, rehabilitation, answers, and accountability. When we believed important concerns had not been addressed, we did what patients and families are repeatedly told to do: We spoke up.
We used the medical center’s grievance process, believing it would provide an opportunity for honest review, correction of problems, and improvement for future patients. Instead, our experience raised a troubling question: What happens when a healthcare organization becomes more uncomfortable with the complaint than with the problem it describes?
As our concerns continued, our ability to communicate with members of the care team became increasingly limited. Portal access to providers was restricted. Questions went unanswered. Care team members were removed from the portal. Concerns were redirected or dismissed. Whether or not these actions were intended as consequences for speaking up, their effect was the same: Communication became more difficult at precisely the time we were trying to advocate for appropriate care.
Healthcare organizations routinely tell patients to speak up. Ask questions. Report concerns. Participate in your care. But those messages mean little if patients and families begin to fear that doing so could jeopardize their ability to communicate with their healthcare team. Patients should not have to choose between advocating for safe care and preserving access to those providing it.
This is bigger than one family. Healthcare systems depend on patients and families to identify problems that may otherwise remain invisible. Complaints can reveal gaps in communication, coordination, safety, and accountability. They are an opportunity to learn. If patients believe that raising concerns may result in restricted communication, dismissal, or other adverse consequences, some will simply stop speaking. That silence is dangerous. Problems remain hidden. Missed opportunities for improvement are lost. And the same failures may affect the next patient.
No healthcare organization is perfect. What distinguishes a trustworthy organization is not the absence of problems, but how it responds when someone identifies them. Does it listen? Investigate objectively? Acknowledge shortcomings? Correct them? Or does it become defensive and focus more on managing the person raising the concern than understanding the concern itself?
A persistent patient advocate should not be viewed as a problem to be managed. That person may be providing some of the most important information an organization can receive about where its system is failing.
Our experience leaves us with a question that extends far beyond our family: Are patients truly encouraged to speak up, or only when what they have to say is convenient? Patient-centered care must not end when a patient or family member raises difficult questions and concerns. In fact, that may be the moment when patient-centered care matters most.
Healthcare organizations should welcome good-faith concerns as opportunities to learn, improve, and prevent harm. Patients should be able to ask difficult questions without fearing that the act of asking will itself become a problem.
Ultimately, this is not simply about the right to complain. It is about the right to speak up without becoming the problem. And so, I return to the questions every healthcare organization should be willing to answer: Does the system – and do the people within it – listen? Investigate objectively? Acknowledge shortcomings? Correct them? Or, when patients and their advocates continue asking difficult questions, does the system respond by shutting down communication, dismissing their concerns, and treating the advocate as the problem rather than addressing the problems being raised?
If healthcare organizations truly want patients to speak up, they must be willing to listen when what patients have to say is difficult to hear.
Sincerely,
Susan Boyer, DNP, RN, FAAN
Weathersfield, Vt.