At the age of five, my brother, Guy, ran into the street and was hit by a truck while flying a kite. He suffered a traumatic brain injury and remained at the cognitive level of a 5-year-old for the next 53 years.
Since then, I have been fortunate to work with those with special needs, volunteering locally every week and with Special Olympics. I have witnessed firsthand peoples' struggle to communicate with those with special needs.
As a certified physician assistant (PA) specializing in neurosurgery, I work regularly with other medical providers and special needs patients. From my personal and professional experiences, I can offer five suggestions that may help clinicians provide the best quality care to those with disabilities.
1) Prepare for the Encounter in Advance by Reviewing Patients' Histories
Being prepared is paramount to a successful encounter for both clinicians and patients. The complex challenges of those with special needs require extra preparation and a thorough review of their history. For example, if the patient has a central nervous system deficit, flaccid paralysis, or spasticity is consistent with their baseline, we clinicians must understand these crucial parameters.
Also, consider in advance who will chaperone the patients. Wherever patients reside, it is imperative that they are accompanied by a reliable caregiver who is familiar with their activities of daily living and physical, social, and intellectual norms versus a driver who transports patients to the clinic. In a perfect world, physicians could schedule a phone consult before a visit with a caregiver/family member to better understand how they can make the visit most comfortable for patients.
2) Assume Patients with Disabilities Understand What is Being Said to Them
It is common for clinicians to be uncertain about how to communicate to the patients for fear they may not understand questions or comments.
In most circumstances, speak to patients with disabilities first, even if patients are nonverbal, visually impaired, and/or have a blunt affect. We do not know how patients interpret interactions. Many clinicians assume that if the patients cannot see or speak, they may not comprehend what is being said. The human mind/body is extraordinary and will elicit clues and sensory mechanisms. We should not underestimate their ability to understand. After speaking to patients, it is also vital that the caregiver/family member then share their insights and answer pertinent questions for clarification.
I speak from personal experience. When I would escort my brother to a medical appointment, physicians would ask complicated questions directly to him, aware that he could not fully understand the question. However, he greatly appreciated that he was being spoken to directly. Guy would try to answer the questions as best he could. I would wait until Guy finished commenting, and then sensitively offer additional clarification to the questions.
3) Remember a Disability is Different Than an Illness
While illness and disability can coexist, it is important to separate the disability from the acute care treatment plan. Patients and the caregiver/family member do not feel the disability needs a cure. Treating the disability as an illness inappropriately perpetuates the "sick" role and is ultimately disempowering for people who struggle with challenging conditions.
4) Allow Additional Time for Visits
Patients with disabilities need more of clinicians' time than nondisabled patients because of their physical, communication, and cognitive barriers.
Patients with disabilities may need more time to express themselves, or they might use technological aids that delay the process. They may also need extra time dressing and undressing or require more time for clinicians to position and examine them.
When the family member/caregiver attends appointments, three-way conversations are more time-consuming. Patients with a cognitive disability require more detailed or simplified instructions and explanations. Some also require written material to support verbal directives.
5) Consider their Vulnerabilities
Patients with disabilities are more vulnerable to secondary complications, such as unattended minor infections that progress quickly to major infections. Patients with disabilities may also be economically vulnerable, age prematurely, or be at increased risk of physical, sexual or verbal abuse. Clinicians who look for these risk factors can offer a line of defense by recommending community resources or referrals.
Patients with disabilities afford us the chance for immense professional growth if we welcome the opportunity to remain clinically teachable and emotionally compassionate to those with special needs.