Archive Diversity in Surgery 2019

A Better Way to Care for Autistic Patients

This protocol makes care easier on and better for patients, families and providers.

Dominique Hershberger

Dominique Hershberger

BIO

CHANGING THE GAME
McMaster Children's Hospital
CHANGING THE GAME Rather than assume an autistic child will be disruptive and sedate them as soon as possible, healthcare providers should do everything they can to engage and soothe the patient to make them a calm and willing participant in the surgical process.

Near the beginning of my career, 2 burly men escorted their large 17-year-old autistic brother into our facility. "We'll hold him down so you can start the IV," said one of the brothers. "We've been through this before, and this is the only way it can work."

Shocked, I protested and suggested premedication, but the family explained their experiences before were not encouraging. Our facility had no protocols for patients with autism spectrum disorder (ASD). So, I reluctantly followed the brothers' suggestion, and after two tries at catheterization finally got the patient sedated. The procedure was completed, but at what cost? The process almost certainly further intensified the patient's aversion to health care. It is a case that I will always remember and has changed my practice. A child who desperately needed gentle, compassionate care had received the opposite. We needed to do better.

With my colleagues (Desigen Reddy, FRCPC, and Leora M. Bernstein, FRCPC), we trialed a "Special Accommodations Program" for children with ASD at our institution. It very quickly became the most rewarding aspect of my practice.

ASD cases are very challenging, often taking providers out of their comfort zone. However, with some small changes, things can be easier for patients, families and staff. You must change the perioperative environment. There are very powerful reasons why:

  • Although only about 1.5% of all patients are on the spectrum, autism is the fastest rising developmental disability in North America.
  • Although the population is small, autistic people tend to visit surgical facilities much more frequently than neurotypical patients because they require sedation or anesthesia for dental care and routine procedures like eye exams, blood work, scans and even vaccinations.
  • Caring for non-verbal autistic patients can take much longer than normal and can be extremely stressful and disruptive, not only for the patients but for the families and the providers as well.
  • Without understanding or a plan, you may succeed in getting patients anesthetized, but you will have traumatized the patients and made them more averse to health care.
  • Importantly, you can use many of the same procedures you use for patients with autism to help make a better experience for patients with generalized or procedure-specific anxiety.
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