Patient Consent: A Manifesto

We have an accessibility problem in healthcare. Translation services are difficult to obtain and utilize, and for patients who are illiterate, or whose primary language is, for example, Mexican Sign Language (which is different from American Sign Language), there is no good way to achieve truly informed consent. At best, they might have a decision-maker to advocate for them, or they might not.

In a world where predictive analytics can help retail identify that a young woman is pregnant before her family knows,[1] why can’t we provide accessible education to our patients about the procedures they will receive, where the incision will be when they wake up from anesthesia, and how long it will take to recover?

And for the cost-conscious executive, how much clinical time would be saved if patients could begin the consent and patient education stage at home on a smart phone rather than starting from scratch during an expensive consultation with a specialist?

Or how many elective procedures will patients politely decline when they have a chance to weigh the costs and benefits for themselves?

How many medical errors will be erased simply by informing patients so they can speak up about their care, rather than just nodding and signing because uncontrolled diabetes and poor access to healthcare has left them blind?

As a nurse, I witnessed the struggle of obtaining access to healthcare for people who cannot read or speak English or have lost their vision due to uncontrolled diabetes. Imagine what a difference it would make for these patients to provide a streaming library of pre-operative consent videos where patients can learn about the details of their surgery in their native language and with appropriate accessibility features?

I would like to see a streaming video library with accessibility and translation for every operation on the ICD Procedure Codes list, and I would love to see each consent include a risk matrix that lists any known patient risk factors, with a predictive risk score they can see before they sign. And while we’re at it, why not include the financial risk? How much would an ICU visit cost if things go wrong? Does their insurance cover that? Even with price transparency,[2] the estimated cost of a complication is typically not shared with the patient.

I recently watched the documentary Bleed Out, [3] and joined an online interview with the creator, Stephen Burrows.[4] He described how his mother expressed concern about having a surgical revision while still under the effect of Plavix due to the risk of bleeding. The nurse asked the doctor about it, and the doctor wrote an order acknowledging the risk and to proceed with the surgery. Was this informed consent? Would the patient still choose immediate surgery if given a risk matrix comparing the risk of pain from waiting compared to the risk of bleeding from surgery?

Or if a surgeon documents that a patient was a “difficult patient” to operate on due to obesity, and that the post-operative infection is due to patient features that were present and observable before the operation, was that additional risk described in the operative consent? Did the patient understand that obesity and diabetes increased their risk for infection so they could be involved and take precautions to prevent it?

In healthcare, we are currently providing a highly tailored system with software that does not communicate across programs. However, patient care is the opposite: Patient care is standardized based on protocols, software, and studies that may or may not apply perfectly to the needs of the individual. As we push towards interoperability and standardization in the system and documentation, we need to simultaneously press toward individual accessibility in care. It’s time to tailor operative consent to the patient, not the system.

Before we start arguing that it’s too expensive, keep in mind how many billions of dollars our nation is spending on medical errors.[5] Remember that we have software that would be capable of predicting patient risk in milliseconds. The financial cost will not hold us back from improving patient safety. But, as Carey Lohrenz, [6] the first female fighter pilot in the U.S. Navy said so aptly,[7] if we are going to be pioneers who build a better path, we’ve got to focus on what matters most. It’s the only way to build a resilient system. In healthcare, what matters most must always be the patient.

What do you think? Does this strike fear in your heart, or do the possibilities excite your innovative side?

---

[1] Clear, J. (2018). Atomic Habits. Avery.

[2] CMS. (2022). How to Get the Most Out of Transparency in Coverage. Health Plan Price Transparency. Retrieved on Sept. 16^th, 2022, from https://www.cms.go/healthplan-price-transparency/consumers.

[3] Burrows, Stephen (Director). (2018). Bleed Out [Film]. HBO Documentary Films, Impact Partners, CreativeChaos vmg, The Burrows of Hollywood.

[4] Binder, L., Burrows, S. (2022, Sept. 12). Healthcare Exposed: Time to Reclaim the Narrative [Conference session]. NAHQ Next 2022 Virtual Conference, United States.

[5] Rodziewicz, T.L., Houseman, B., & Hipskind, J.E. (2022). Medical Error Reduction and Prevention. In StatPearls StatPearls Publishing.

[6] Lohrenz, Carey. (2014). Fearless Leadership. Carey Lohrenz Enterprises, LLC.

[7] Lohrenz, Carey. (2022, Sept. 14). Remaining Relevant [Conference session]. NAHQ Next 2022 Virtual Conference, United States.