The first part in a series on the emergency department, hospitalization and insurance
Today we begin a series of blogs on topics that none of us likes to think about. The daily challenges autism brings are plenty enough to keep loved ones on their toes. Our experience with hundreds of families though, tells us that there is value in discussing circumstances that you hope will never ever happen to your child . . . just in case . . .
There is nothing scarier as a parent than to know your child needs emergency services of some kind. Where do you go? What will the experience be like? How do I help my child through this experience? And for a parent of a child with Autism, an already challenging day becomes doubly so.
We recently sat down with Eileen Klein, MD, MPH. Dr. Klein is a practicing Physician in the Seattle Children’s Emergency Department, a Professor of Pediatrics, Director of Pediatric Emergency Medicine Fellowship program, and Co-Director of Research for the Children’s Emergency Department (ED).
Many of you have had experiences at the Children’s ED, probably a mix of good and bad. The idea behind this blog article is to not go into those specifics, but to share the perspective of one Doctor who has seen many children with Autism come through her doors, and how you can best prepare.
theautismblog: What is the current process when a parent brings their child to the ED?
Klein: All children are checked in, and will receive a wristband. In general, they will first be seen by a nurse called the “triage nurse”. This Nurse will ask some questions and take vital signs (heart rate and blood pressure for example) to determine how sick the child is. After seeing the Triage nurse, the child will either be sent back to the waiting room or the family will be taken to another room where they will be seen by the medical team. In general the door to this room will need to remain closed for infection control purposes. It is at this time they will see a Resident who is a physician that is training to be a pediatrician, family physician, or emergency physician. After meeting with the family, The Resident will then consult with the physician in charge (the attending physician) who will join the session, and together they will complete a plan for treatment. Parents should realize the rooms their child will be in are not ideal; they have equipment that is accessible to the physicians, but also to the children. There are drawers that can be opened, suction equipment that can be pulled and beds with peddles that can be pushed to raise of lower it, etc.
theautismblog: You mentioned that every child receives wristbands, is this optional if a child struggles with wearing one or refuses?
Klein: No, unfortunately this is not optional, and we have no other system in place right now. The wristband is our way of knowing we are treating the right patient. We will have put the wristbands on a child’s ankle if it doesn’t work on the wrist.
theautismblog: Will families need to repeat their story with each person who enters the room?
Klein: More than likely yes and we realize this can be incredibly frustrating for parents. However, due to the nature of the ED, there are multiple things going on at once, and each provider may not be able to consult with the other prior to entering the room. BUT, at each instance it is also an opportunity to tell us what your child needs.
theautismblog: Do you have parents tell you their child has Autism? Or do you normally ask?
Klein: We need you to tell every provider caring for your child, the best way to deal with your child. We do not want to lose the connection with the child. It can be as simple as saying, “my child has special needs” and we go from there, or if you have specific guidance we want to know and will follow your lead. We can not figure it out if we are not told.
theautismblog: Are restraints used?
Klein: We don’t like to hold patients down, but there are times that we may need to. We always partner with the parent in determining how best to approach their child.
theautismblog: What about if a child needs an x-ray? Any advice?
Klein: Yes, parents will need to prepare to provide a lot of support, and be highly engaged in the process. Staff does try to make this as gentle and calm of a process as possible.
theautismblog: So let’s back up a minute, and talk about anything that parents can do to prepare for a trip to the ED before the emergency happens. Any suggestions?
Klein: Yes, it would be good to have a bag packed of items the child may like while waiting. There are TVs in the rooms, and if a child has a video they like to watch, that can be played. Having a set of headphones to bring along would help as well if that is helpful to your child.
theautismblog: How does a parent know if their child needs Urgent vs. Emergent care?
Klein: If your child has a fever, a small cut that needs to be stitched, urgent care is a great option. There may be less of a wait time. However, if your child has a significant behavior issues at baseline or has difficulties with behavior due to their illness or injury, the ED is where you want to go as there are more resources to help. The urgent care clinic may not have enough staff on hand to manage a child with difficulty being calmed, even if the illness or injuries are minor.
theautismblog: Are you in contact with a child’s PCP while they are in the ED, or after the fact?
Klein: Yes, all PCPs will receive a fax stating why their patient was seen, and the discharge plan. In some cases, the PCP will receive a call from us to discuss diagnosis and treatment plan.
theautismblog: What is the average wait time at the ED now?
Klein: Our wait times are some of the lowest in the nation. The majority of our patients will see an MD within an hour of arrival and more than 50% of families will see an MD within 30 minutes of arrival to the ED. That doesn’t mean you will be out within an hour. Most ED stays last for 2 hours or more due to testing needed or care that needs to be provided.
theautismblog: Are there expansion plans for the ED?
Klein: Yes, we currently see 40,000 patients/year. By March 2013, we will have a bigger department with more resources. We will be able to provide the same care and hope to be even more efficient in our care. We are planning for continued increase in patients over the next several years. Rooms will be more multi purpose, and able to adjust to the needs of the patient.
theautismblog: Is there anything else parents or caregivers should know about the ED and what to expect?
Klein: What I want for people to know is that we know the ED is a difficult place, especially for children with autism. We are constantly evaluating how we can do a better job. As a medical provider, when I have an encounter with a child that does not go well, it is a powerful and emotional experience. We debrief with each other, and may contact the families after the fact to check in and see what we could have done to improve the experience. I want parents and caregivers to know these three things:
- We all care about the same thing – your child. We want to do the right thing, and we always need your help.
- We respect your role as an advocate, and we want you to feel empowered to be an advocate. Tell us what you need, and we will always explain why if something can’t be done.
- You may need to tell your story more than once, but each time you tell it there is a chance you may give us additional information to help us care for your child better.