Patient Story

Nurse and patient: Seeing patient care from both sides

As a patient, and as a nurse, the past year has made it extremely difficult to express with urgency the importance of patient experience. With our clinical north stars extinguished and the giants that lead us towards those things we strive for: progress, quality, improvement in care for patient and work environments for clinicians gone, well, it feels like the rug has been pulled right out from under us.

But now is the most time important to speak. Time to champion patient experiences. While the institutions are in need of rebuilding, better to rebuild with patient advocates as advisors.

I have had lupus since I was 17 years old. I had a stage 3 melanoma at age 32. I had a lumbar fusion at age 33. You’d never guess it, but the one I’d wish away? The lumbar fusion. It was a procedure that, had I know the details on outcomes and alternatives, I would have declined. With non-specific chronic lumbar pain, the rate of positive outcome at 5 years after procedure is less than 50%. For me, it never helped. It did start me on chronic opioids and had prevented me from ever resuming a beloved career as a nurse in direct patient care.

My ask for all health care professionals is to consider the importance of shared decision making. Knowing that what a patient wants may differ from what you want for them, and that that is okay. Informing patients on success rates and treatment alternatives should be a minimum for informed consent upon starting a medication, treatment, or procedure.

My surgery was performed by a surgical group that did their surgeries in major hospital chain in my town. The incentive to operate is high. Throughput matters in the fee-for-service world, and surgical procedures are one of the few areas in the hospital where there is profit to be made. I have since changed my insurance to a value-based group. I believe that value-based health care is more able to implement patient-friendly options.

I appreciate the chance to be in a virtual room with so many health care providers that interested in patient advocacy. I count myself as one of you; I know that we all share the goal of being of service to our fellow humans. The system we find ourselves working in does a lot to make that goal feel unreachable. Continuing to make changes based on real patient experience is essential to improving everyone’s health care experience. Now is the time to push forward.

Melissa Crawford
Melissa Crawford
Melissa Crawford MSN, RN, CNL, has been a patient advocate since getting her diagnosis of lupus at age 17. At age 32 she was successfully treated for stage III cancer, and worked through the range of mental health issues that so often go with chronic illness and cancer. During her work as a critical care nurse she injured her back, and had a failed lumbar fusion. Since then her advocacy has focused on supporting shared decision making: giving patients a clearer view of outcomes, adverse events, and alternative treatments. She believes the treatment is meant to fit the individual as much as the pathology. Coming to terms with her back disability, Melissa has spent 5 years building a successful career as a writer and project manager, interviewing clinicians nationwide and writing over 60 articles for the thought leadership website, Clinician Insights. She also manages the bi-annual UnitedHealthCare Global Clinical Journal. She is available for freelance writing, editing, and project management through her company Context Health Communications, LLC.

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