Photo by Joe Pee | Unsplash
My hope for World Patient Safety Day this year is that health care providers treat patients with dignity and respect, even if — and maybe especially if — they present as quirky, frustrated, or in other non-normative ways.
My son Skyler likes bow ties with Winnie the Pooh characters or cats in space on them. He likes to make puns and tell jokes and loves to talk about string theory or deep philosophical concepts.
Skyler is slight in stature with scoliosis. He has poor frustration tolerance and can become very anxious in complex social situations. He takes great pride in having spoken about his patient experience at the Institute for Healthcare Improvement (IHI) Forum. Skyler earned a Bachelor of Science degree in social work and a post graduate certificate from a medical informatics program. Skyler can seem either brusque or charming.
Thirty years ago, Skyler was born unable to breathe or swallow. His birth defect, along with two hours of failure to rescue from airway collapse, created a lifelong opportunity to advocate for health care improvement. Frequent hospitalizations, years with a tracheotomy, and over 45 surgeries gave my youngest son and me insights into medicine at its best, with caring and careful providers. Sometimes, though, we also see far too many opportunities for improvement.
Skyler experienced over 12 psychiatric hospitalizations since just before the start of the COVID pandemic. Due to his complex needs, the hospital psychiatrist prescribed a monthly injectable medication. A month later, the mental health care outpatient clinic’s administrative manager told Skyler that he had to see a certain doctor. Skyler wanted to see a different provider. The manager accused Skyler of being prejudiced for not accepting the provider recommendation. The clinic pharmacy staff said Skyler could not get the injectable until he saw the provider the clinic recommended.
When Skyler — diagnosed with schizoaffective disorder, a differential diagnosis of autism, psychosis, and more — complained, the manager told him he was “unprofessional.” Skyler’s care came to a standstill for several weeks with no injectable medication and no psychiatric care appointment or follow-up.
Then, one cold morning last November, I answered the doorbell to find two policemen from the local university. They handed me a letter, not folded or in an envelope, that indicated that due to “disruptive and threatening behavior toward staff,” Skyler was dismissed from service at all hospitals, clinics, and pharmacies in the health system where he had been receiving all his care. A deviation from the letter’s boilerplate language added that Skyler could also no longer serve on the transgender Patient and Family Advisory Council (PFAC).
The dismissal surprised Skyler’s clinicians. Several said they could not understand why it happened but indicated that doing anything about it was above their pay grade.
Skyler was devastated. That afternoon he almost did not survive a suicide attempt. Ironically, he ended up being emergently transported to the hospital from which he had just been banned. Because he had been “dismissed,” he had a round-the-clock guard as he recovered in the ICU. Eventually, staff determined that he might have quirky social skills but was not a threat to them.
The health system did not provide a way to appeal the dismissal. No transparency exists around the process for making such a decision. The health system denied Skyler access to his electronic health record. Skyler had to find all new providers, including a primary care provider, multiple specialists, a therapist, a psychiatric prescriber, and pharmacies.
I have since learned from my PFAC colleagues that Skyler is not alone. For example, the state’s long-term care ombudsman has received many complaints from family members of residents of assisted living and memory care units. The family members say staff threaten their loved ones with discharge for behaviors that should not be unexpected considering their dementia diagnosis.
Responsibility for Professionalism
To be clear, health care staff must be protected from patients who harm or threaten harm. Patients who are physically threatening should be reported to law enforcement. Absent physical threats, however, the process for dismissal should include written warnings and, especially in behavioral health settings, a behavior plan so that patients can understand expectations. The decision making process should include clinical providers to support a patient’s interpersonal skill development.
Patients should not, however, be held to a “professional” level of interaction with staff. Patient-centered care means staff should be expected to treat patients with dignity, respect, and courtesy. All staff — including receptionists, billing clerks, nurses, physicians, therapists, and others — should be trained to provide care to persons regardless of their race, religion, orientation, affect, or even benign obstinance.
Dismissing patients who complain is a quality and safety concern. Complaints can help identify areas that need improvement. Patient insights support quality and governance initiatives. There should be no room for using dismissal as retribution for complaints.
Lisa Morrise is Executive Director for Consumers Advancing Patient Safety. She has served on committees as a patient for the National Committee on Quality Assurance, the National Quality Forum, and the Center for Medicare and Medicaid Services.
You may also be interested in:
Information on WHO World Patient Safety Day