Using Communication to Drive Care: Supporting Your Loved One with a Disability in a Medical Crisis

Supporting your loved one with communication challenges can be a daily stress: caregivers use strategies to meet basic needs, grow social skills, and encourage authentic relationships. Sustaining everyone’s mental health is also a key consideration, because when a person struggles with communication, their behavior can reflect their frustration and complicate fruitful interactions. Patience and knowledge of the person’s communication style are always necessary. During a health crisis, caregivers not only need to “step up their game” when communicating with their loved one, they need to serve as a bridge between medical personnel and the patient. Quality communication has considerable impact on the experience and the outcomes of routine medical procedures, more serious tests and medical care decisions.

Our family recently experienced an urgent health crisis with our daughter. As parents of a child with a disability we, like many others, have acquired a lot of skills over time. During our daughter’s hospitalization we used many of the tools we have gained BECAUSE we are parents of a child (now adult) with a disability! I found myself being thankful for previous difficult experiences because they made this incident much easier to navigate.

Background

Our daughter lives with intellectual disability. She has multiple other common diagnoses of someone with that “label”: speech and language disorder, sensory processing disorder, attention deficit disorder. Because of these challenges, her being under stress (particularly when she is ill) is stressful for all of us. Often we don’t have the full picture of her sensory experience because of her communication challenges. Is she in pain? Where is the pain? What is the degree of pain? Is she uncomfortable? Is it the needles/IVs? Is it a clothing issue? Is it nausea? Is it the emotional distress we would all be experiencing if we didn’t feel well? It’s COMPLICATED…and she was about to get a few more diagnoses in her collection…

What happened?

On Easter day, as we were cleaning up from dinner, my daughter had her first-ever tonic-clonic seizure. It was sudden and unexpected, and occurred while visiting family almost three hours from our home. We ended up, via ambulance, at an unfamiliar hospital, and in a matter of days we learned our daughter had two genetic conditions and required brain surgery.

Thankfully, our first five days of hospitalization occurred in a pediatric ICU. Pediatric environments are friendlier and have specialized staff that are used to providing more TLC to patients and involving parents in care. Here we had an acquaintance who truly listened to our needs and was deliberate and thoughtful regarding how to proceed with the many invasive tests that needed to be completed. Because of our daughter’s disabilities she was unable to stay still while awake, so sedation was necessary. He helped us work through issues like…What information did the doctors absolutely need? Could certain tests be done at the same time? What was the safest and most effective method of sedation? These questions and answers led us to being able to eliminate certain tests and perform multiple tests while under one sedation process. Each one of these could have been a conversation, but because we had someone who had a personal connection with us, he was considering the complications, consulting with the appropriate departments and then presenting options. We can’t take much credit for the TLC we received here—it was being served in a pediatric unit and the “above and beyond” efforts of someone who we now consider a dear friend. These are all important questions I would encourage you to discuss with your loved one’s doctors.

Likewise, I would encourage you to REACH OUT to contacts. Do you—or does someone you know—work in the facility that your loved one is being treated? Or do you know a medical professional in the same specialty your family member is experiencing difficulty? Their expertise and familiarity may help you feel more comfortable with decision-making.

Moving to a large urban hospital near our home for surgery we had to dig deep into our advocacy toolbox. Here are some of the key things that we feel improved the delivery and quality of care—they all contain some aspect of COMMUNICATION.

We provided a MEDICAL POWER OF ATTORNEY so that legally the doctors needed to include us for permission for procedures and discuss care options. We had conveniently done this with our attorney only a month prior to this crisis so were able to submit it to the hospital immediately.

We confirmed that the medical team had the RECORDS, reports, scans, etc. that were required to do their job. This is especially relevant when coming from another medical facility or outpatient care. This is important so that the individual does not need to undergo unneeded tests that may cause more trauma, take time, and incur unnecessary expenses.

Next, I developed a brief one-page DOCUMENT with the intention of positive staff interaction. It looked something like this:

The first nurse of the day appreciated our list so much she posted it next to the staff computer in her room. The best staff assumed competence and took things at our daughter’s pace. Being rushed in a medical setting is uncomfortable for all of us, but for someone with a disability, trying to rush communication or a procedure will likely lead to an uncooperative and behaviorally unstable patient. 

We needed to KEEP on top of PAIN MANAGEMENT. Especially if your family member cannot express themselves, make sure there is a way for them to indicate their level of pain OR make sure they are on a regular pain regimen if it is warranted. CONFIRM this method or understanding when stepping down from ICU to a regular floor, and/or each time a new shift of staff begins! Pain management is a key element to surgical recovery. Our daughter’s AAC device provides a page of body parts, numbers from 1 to 10 and other emotions related to pain that give us some insight into her discomfort. Hospitals and doctor’s offices should have visual scales available to help report pain.

GET TO KNOW the medical staff. Using both the staff person’s name and the patient’s name when you interact with the medical staff helps develop a better rapport, and I believe leads to better care. Keep a notebook with everyone who comes and goes and what is discussed. At discharge you’ll be asked about what went well and what didn’t so the hospital can improve its services. Many hospitals now also have awards for staff who go above and beyond. Because of the vital roles healthcare workers play, it is important to praise those who do an outstanding job; we were happy to nominate two nurses who were exceptional. If you are staying with your family member, be sure to inform the staff to wake you if the doctor is there to discuss care. The SOCIAL WORK department was incredibly helpful with setting up home care. Our NURSES helped with providing the post-surgical supplies we needed, and the hospital PHARMACY provided medications so that our daughter didn’t have any interruptions and we didn’t have to have them filled immediately when we went home. BE AWARE that WEEKENDS are much quieter in hospitals, and you may not have access to all services and supports. Sometimes hospitals/nursing facilities hire “agency” staff—these are individuals who work for third-party contractors and are placed in shifts on weekends or when regular staff has called out. They are not very knowledgeable about the inner workings of the care provider. If you have a question and encounter someone who says “I’m not sure. I’m agency.” Ask who you should direct your question to, perhaps a supervisor or someone there during normal “business” hours.

We TRUSTED OUR INSTINCTS: If something doesn’t seem right, it probably isn’t. Utilize supervisory staff when needed—these staff are in place to intervene if something doesn’t go right (which on a few occasions it did).

Keep up COMMUNICATION with FRIENDS and FAMILY. You WILL need support! Take some time to call a friend. Create a group chat/text to allow you to update a lot of people in real time without having to repeat information. This also helped to “remember” what had really occurred over those 11 days and process the experience when we had some time to recover. Friends and family can and will want to help: Ask for what you need! Meals, laundry, transportation, visitors (or NO visitors), spiritual supports, etc.

DOCUMENTING THE EXPERIENCE with photos was particularly helpful!  Sharing these memorable moments with others throughout her recovery has helped my daughter process the experience and express her feelings during the crisis and even in these months after. For us there is a new level of understanding around the internal struggle that limited communication can have when experiencing a complex spectrum of emotions.

Part of our family’s collective recovery is sharing all the emotions we have had during this experience, especially gratitude to the many people who helped us throughout this journey! There is certainly much joy in seeing her return to the things she loves! Our life is different, but we are learning to develop our “new normal.” It is another shiny new tool for our resiliency toolbox.

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