A Better Way to Care for Autistic Patients

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


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.

Our program focuses on improving the experience for autistic patients at our children's hospital. The results have been overwhelming. Our inductions are now much more successful and peaceful, our families and our providers are thrilled, and most importantly, our patients avoid a lot of the trauma they've experienced in the past. Here's our process.

1. Change the paradigm

Traditionally, healthcare facilities have viewed autistic children as combative or disruptive. The goal has been to sedate or anesthetize these patients by whatever means possible. We need to turn that paradigm upside down. Luckily, nonpharmacological interventions are providing better outcomes.

Our program has focused on changing our process to suit the individual needs of the patient rather than asking the patient to adapt to our environment. We do everything in our power to minimize stress to the patient, to engender cooperation and to make the patient a more willing participant in the process.

There are 2 advantages to rethinking the approach. The most important is that contentious encounters traumatize patients for life. While it's typically possible on any day to get a patient through the surgical process using heavy sedation and sometimes physical force, that heavy-handed approach will terrify the patient and the family. Traumatic inductions can result in behavior changes, sleep disruption and symptoms resembling post-traumatic stress disorder. At the very least, it will make things much harder the next time that patient needs care.

The second reason is practical. Some of these patients are very difficult to sedate; oral medications may not be effective or may be difficult to administer. Excessive pre-sedation can extend discharge times, which affects nursing ratios. Also, there is evidence that children with ASD may metabolize medications differently. Sedation and anesthesia can affect some children significantly in the post-op period. Some patients exhibit effects for days after the procedure.

2. Individualized plans

We ask patients and family members to visit us for a pre-op meeting. A pre-op nurse with a standardized autism checklist can do an excellent job of pre-op screening. (Download a checklist you can use to assess and manage children with autism at outpatientsurgery.net/forms.)

Parents appreciate being asked about how we can best support their child and being involved in creating a coping plan. They typically are eager to share how autism affects their child's daily function and behavioral triggers. These may include loud noises, bright lights, groups of people, strong smells, transitions and previous experiences at healthcare facilities. Based on the information gathered, your team can customize the child's experience to make the visit as stress-free as possible. Some patients only need slight environmental modification, or a few changes in the way the perioperative staff communicates. Others may need more extensive coping plans. Document and communicate these coping plans to everyone involved in the patient's care.

One important question is whether sedation will be required and, if so, how much? If the child is verbal, I typically ask the child to stand up so that I can listen to the heart and lungs and do an airway exam. This gives needed information on how the child tolerates strangers, healthcare professionals in their space and physical touch (all necessary during anesthetic induction). If the child is cooperative, I proceed to a mask test. We also begin to expose them to some scents. The smell of sevoflurane can be a trigger. It's important to note that for some children a mask induction can be more traumatizing than an IV start and, in those children, IV induction may be preferred. Based on the child's behavior and the parent's feedback, we decide if premedication is necessary for anxiolysis (1 agent) or compliance (2 agents). Depending on the patient, we sometimes send a mask home for practice and re-evaluate on the day of surgery based on how well the child adapted to it.

3. Streamline the pre-op process
SETTING THE MOOD Dimly lit pre- and post-op rooms make the overall surgical experience less threatening and overwhelming for patients with autism. The OR itself should also have as little light as possible, and drapes over equipment, devices and supplies help calm patients as well.   |  McMaster Children's Hospital

We always try to schedule ASD patients as the first case of the day to help minimize wait time and get the child back home as early in the day as possible. For all children, but especially those with ASD, coping abilities decrease acutely later in the day.

Scheduling ASD children as the first case also has the benefit of minimizing the NPO period, which can be a make-or-break for many children with autism.

We ask families with autistic children to arrive 60 minutes prior to surgery. We admit the child and the family directly to a private, quiet, dimly lit room away from non-sedated children. A dedicated child life specialist attends to the child and family to help with distractions and interactions with hospital staff. We have the same-day surgery nurse, surgeon and anesthesia provider visit the child and family in the room. If we're confident that weight and vital signs have remained unchanged, we may choose to skip these tests. As a pediatric hospital, we ask all our patients to bring comfort items, including stuffed animals, and we also encourage support animals if they use them at home.

We do not ask these patients to remove any articles of clothing, including earrings or elastic hair bands. If we need to remove clothing, we do it after the patient is anesthetized. Hospital gowns can be scratchy. To a child with sensory processing difficulties, this can be completely intolerable. We do not require patients to wear a name bracelet as long as a parent is present, as applying these can be a trigger for some children. If our pre-op plan includes sedation, we typically use a combination of midazolam (0.25 mg/kg or 0.5 mg/kg) and/or ketamine (1 mg/kg to 6 mg/kg). Using ketamine, a dissociative agent, allows us to use less midazolam. Medication can be administered by cup or syringe, and is made more palatable using flavored syrups of the patient's choosing. Midazolam especially is very acidic. If the patient has an aversion to taking liquids by mouth, we can use an intranasal or intramuscular route if it's deemed to be overall less traumatic than an IV start or mask induction. Dexmedetomidine can also be used for pre-sedation (PO, IM or intranasal). It has the advantage of being tasteless, so it can be helpful if patients have sensory aversions. It has poor oral bioavailability however, and takes longer to onset.

4. Prepare the OR

The OR team dims the lights and covers all the medical equipment, instruments and IV supplies with drapes to help make the room less threatening. They place signs on the OR doors that warn non-essential personnel to stay away. The team also does the time out before the patient arrives.

When we bring the patient to the OR, the parents or caregivers come along and stay until the patient is asleep. Typically, while the patient is awake, only the parents, the anesthesia provider, a nurse assistant and sometimes an anesthesia resident is present. Everything is quiet. Everyone in the room is completely tuned in to the patient and focused on a successful induction. Once the patient is asleep, the family is escorted to the waiting room. We do a surgical pause before the surgeon begins and then we proceed with the surgery. During the operation, the child-life specialist stays with the family members, debriefs the preop interactions and events, and helps them prepare for recovery and discharge home.

5. Smooth out the post-op process

The coping plan extends to the PACU, which is a challenging place to be for many children with ASD. To minimize emergence agitation, we make sure the drapes are drawn, the lights are dim, the TV is off and the parents are at the bedside, with the stuffed animals or comfort items in the area before the patient wakes up. The IV saline is locked from the OR and is removed as early as possible once in recovery. Analgesia, antiemetics and fluids are given in the OR. If the patient likes music, we have it playing. If the patient feels more comfortable with a weighted blanket, we supply one. Ultimately, timely discharge when appropriate allows for patients to be safely sent home without becoming agitated in recovery.

The big payoff

These interventions have been practice-changing in our hospital. Providers feel empowered to do better, and they see how it makes a difference.

Maybe even more than other patients, children with ASD deserve and require the best we have to offer. With these patients, there are no shortcuts if you want to provide excellent care. OSM

Footnotes to this article can be found here.

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