by Rose Warman
Establishing exceptional healthcare teams for people diagnosed with severe/profound intellectual developmental disabilities (S/PIDD) in critical care facilities can be difficult. A diagnosis of S/PIDD can severely complicate recovery, specifically due to the individual’s inability to verbally communicate and/or behavior challenges.
My son, Derek, diagnosed with S/PIDD, landed in the hospital when his community home manager Mary noticed he wasn’t eating or walking, appeared uncomfortable when seated and was overly agitated. He had no outward physical signs of medical issues just not his typical self; i.e., happy, eating like a horse and moving about like there’s no tomorrow. When he was brought to the emergency room, the healthcare team conducted an exam but since they were unable to diagnose an issue, he was kept overnight for observation.
During the night and following day Derek became extremely agitated: thrashing his arms/legs, pulling at his IVs, biting, and rolling side to side. To those who were familiar with Derek, these were all signs of discomfort. Because Derek couldn’t verbalize, his community home family and I offered suggestions to the healthcare team of potential pain sources. We suggested feeling for broken bones or belly stiffness, looking for dental abscesses and/or blood in his urine and if that didn’t identify an issue, conduct a full body scan.
Unfortunately, as the healthcare team prodded Derek, he became more and more agitated; banging his arms and legs against the bed rails, reaching out to grab anyone and anything. At one point five people were holding him down. As I watched, it was clear that Derek was further distressed from the staff’s hold and I asked the team to watch they weren’t squeezing a muscle and/or pinching a nerve and I strongly suggested use of mechanical restraints which have worked well for Derek in past hospitalizations. However, the hospital team continued to hold until Derek’s thrashing became so intense that one nurse had to let go when injured. When that happened the team decided to use the mechanical restraints and once in place, Derek quieted knowing he was only fighting himself. It was then that the hospitalist turned to us and stated that he felt all of Derek’s problems were related to his behaviors and believed there was nothing further the hospital could do for him but send him home. Even though Derek’s home team vehemently disagreed, the hospitalist discharged him.
Not five hours later, his community home staff brought Derek back to the emergency room. This time though, Derek’s community home manager, Mary, demanded attention to Derek’s health concern again explaining his symptoms: doubling over, not eating, shifting uncomfortably in his chair. While Mary advocated in the emergency room, I pleaded with the hospital’s patient advocates. With their involvement, the hospital assigned a new hospitalist who immediately agreed to administer pain medication. When the medications started to take effect Derek’s outbursts substantially subsided. Once the new hospitalist heard our concerns, he ordered an upper GI and Derek was scheduled for tests that afternoon. Soon after we got back what we had been seeking since day one, a diagnosis. Derek had esophagitis and stomach erosion; so severe, the gastroenterologist said it was one of the worst he’s seen. Derek was immediately prescribed medication and was released the following day.
Derek’s story demonstrates challenges faced when an individual with S/PIDD is hospitalized. If you are supporting someone with similar needs the following tips may help ensure a smooth recovery.
PRIOR TO A HOSPITAL VISIT
Call Ahead – Arrange a meet and greet with your local hospital when your loved one is HEALTHY. Your hospital setting should meet your loved one PRIOR to an emergency. This establishes a baseline reference for medical personnel. Those you should consider meeting include, but are not limited to, Patient Advocacy, Director of Nursing, Emergency Department personnel, Hospitalists, Psychiatry, Hospital Security and any specialists necessary for that individual’s care; i.e., Neurologists, Anesthesiologists, etc. Establish which members should be part of your complex care team during your hospitalization.
Communication – Create open lines of communication with your medical team. Create an email group and notify the group of any arising conditions that may warrant a trip to the hospital; i.e., shingles rash, fall, high fever, etc. Keep everyone in the loop – send photos, areas of concerns, etc. that help personnel be up to date and prepared.
Routines – Routines and familiar faces are critical to people diagnosed with SP/IDD. All routines you want followed should be discussed prior to admission to ensure acceptance and, if dissent occurs, resolve this PRIOR to an emergency situation. Make sure EVERY healthcare team is aware of what MUST be adhered to while in the ER/hospital setting. For my son, sitting in his wheelchair, buckled and secure, is ideal in unfamiliar environments.
Document – Create a custom care plan that can be easily accessed in an emergency. Ensure you have access to this plan and determine who should communicate this plan BEFORE you arrive at the Emergency Department. Make sure you have names of those at the hospital who know this plan well and have a list of backup names when your primary contacts go on vacation. Document all conversations and/or use an app like MyChart.
Behavioral & Medication Oversight – If the individual has behavior challenges and uses psychotropics, make sure the hospital has the “go to” medications on hand. Not all hospitals carry all medications. If applicable, determine what sedation medications will be used to conduct medical tests. Outline behavior strategies PRIOR to an emergency. If physical restraint is to be used, how will it be applied; i.e., how many personnel will apply the hold, where the holds will be placed and what physical force will be applied. Ask if the personnel have been trained to avoid pressure points and how they measure the ability to apply pressure at an even rate.
DURING THE HOSPITAL STAY
Complex Care Team Management – When hospitalized, it will be important to be in contact with your immediate healthcare team; i.e., attending physician, nursing supervisor, attending nurse staff, and ancillary specialists. Establish, upon admission to the hospital floor, the best times to discuss care and/or receive updates. If possible, ask for a daily complex care team meeting to discuss strategies and, if needed, resolve any disagreements. Try to ensure that all care discussions occur outside the individual’s room. This reduces the stressors on the patient with S/PIDD, especially if the team needs to resolve disagreements. In addition, meeting outside the individual’s room allows nursing staff to maintain their routine which is a critical step in the care of the patient.
Define Roles – Hospital personnel should know who is who on the individual’s care team outside of their facility. They should know who to contact first in given situations and who knows the individual best. It is critical to be positive and professional and to respect one another and not underestimate a caregiver’s knowledge. In Derek’s case, Mary provided outstanding advice and should have been readily acknowledged for her expertise.
Define Responsibilities – Specify which health actions must be performed by the critical care facilities’ personnel and which by family members, community home staff, and facility sitters. In my son’s case, it should have been established early on that his community home staff should not give medications, restrain, toilet/bath and/or dress.
Abilities – You will encounter many hospital personnel who have limited experience in supporting someone diagnosed with S/PIDD. Perceptions of abilities by those team members will be limited and care can be awkward. It is important to build knowledge of the gifts and talents of the individual quickly. On the daily room dry erase board it may be good to list positive strategies for communication, i.e., use simple one word commands, ask yes/no questions, use a low voice tone; behavior; i.e., ignore yelling, provide time to settle down; medication administration; i.e., crush tablets, place in food/water and feeding skills; i.e., assistance with meals, small bites. Your goal is to build awareness to ensure your healthcare team has the knowledge they need to ensure a safe and successful recovery.
Rose Warman, mom to Derek, has worked in the IDD field for more than twenty years, advocating that all individuals with disabilities be recognized for their abilities and talents and treated with dignity and respect.