Beyond the ICD code: How to better interact with patients with disabilities

Disabilities

The Centers for Disease Control defines disability as “any condition of the body or mind (impairment) that makes it more difficult for the person with the condition to do certain activities (activity limitation) and interact with the world around them (participation restrictions).”[1] This may seem pretty straightforward on paper, but the day to day experience of living with a disability can be more complex than it appears. Because disabilities, especially those that are chronic or severe such as some developmental disabilities, can impact a patient’s life in many ways, doctors must consider how to support and interact with these patients best while engaging with them during clinical care. 

While healthcare providers are often extremely skilled at diagnosing and treating individuals with a variety of diagnoses, because of the unique lived experiences with disabilities, additional consideration of the best ways to interact with people with disabilities is a key part of patient care. Providers should consider a wide variety of interaction techniques, including using appropriate language to refer to a disability, treating the aids of the person (e.g., wheelchair, support person, service dog) with respect, providing the most effective patient education, and considering a wide variety of patient referrals. 

Language Use 

When interacting with patients with disabilities, it is important to be aware of both person-first language and identity-first language. Person-first language aims to put a person ahead of their disability by using language like “a person who has diabetes.” Identity-first language places the disability first by referring to someone as “a diabetic.” Many healthcare providers have been taught to use person-first language exclusively. It is important to know how to use person-first language as it often conveys respect to a person with a disability. However, not all people with disabilities prefer person-first language. Some choose to use identity-first language[2]. For example, many people in the autism community consider themselves “autistic” instead of “a person with autism.”  If this is new to you, it can be confusing, but as a healthcare provider, it is key that you get the wording right as a sign of respect and to establish a better rapport. An easy solution is simply asking patients or caregivers how they like to talk about their diagnosis/disability. 

Also, consider the word “disability.” Many patients may have no issue with this word. However, for parents of young children who are processing a new developmental diagnosis for their child, or for adults with an acquired disability, hearing the word for the first time can be quite a shock. Some patients may still be processing their diagnosis and may not understand how it could impact them or their child. Others may totally understand the diagnosis but do not consider it to be a disability. It is generally unnecessary to avoid the word disability altogether, but consider how and when you are using it, especially with patients with a new diagnosis. 

Now that we’ve addressed how to talk about disability explicitly, it is also important to consider the signals you implicitly send about a person’s disability. While it can feel natural to acknowledge difficulties related to a diagnosis or disability, which can be appropriate in some contexts, please be careful not to cast a person’s condition in an overwhelmingly negative light. For example, commenting that “it must be hard to be a teacher with a hearing loss” could be an attempt to acknowledge the difficulties that result from a disability. Still, it can also fail to recognize the many successes and coping strategies that people with disabilities incorporate into their daily lives. Strive to seek a balance between recognizing potential difficulties and acknowledging that people with disabilities lead full and whole lives. 

Respecting Aids 

Treat physical aids with respect: ask before touching a physical aid and say aloud what you are doing before you do it. For example, if you need to move a walker or cane, ask if it is okay before you do it. If someone uses a wheelchair and you need to move them, definitely ask or tell them before you slowly and respectfully do so. This is true even if you think the person is not able to understand. Communication devices, like alphabet boards or speech-generating devices, are also considered an aid. Because communication devices serve as a person’s voice, they should always be available to the individual and should not be taken away. Consider the aid to be a part of their person. If a patient has a service dog, be sure to ask the patient or their support person how they would like to use the service dog in their appointment [3].

Sometimes patients with disabilities have a support person with them. This could be a friend, a family member, or a personal aide. In some situations, it can feel natural to address the aide when speaking. However, it is important to remember that the person with the disability is the patient, and you should always include the patient in the conversation. This can be done by making eye contact with the patient and addressing them directly [4]. 

Patient Education 

Ask how the patient would like to receive patient education. How an individual best receives information varies widely. It can take some extra time and effort, but it is important to think about how you are delivering information. For example, using a chart or image to teach a patient with a visual impairment could be ineffective and shows the patient you are not considering the realities of their diagnosis. Similarly, if a patient has a hearing loss and you deliver the information only verbally, with no written supports, patient compliance is likely to be reduced, and your patient will probably leave frustrated [5,6]. 

Ask the patient how they learn best and whether they have a specific learning style, benefit from visual or other supports, or require an interpreter (e.g., American Sign Language interpreter). Additionally, always consider the reading level of patient materials. As a general rule of thumb, it is good to aim for a third-grade reading level to help ensure that patients with various abilities and backgrounds can access your materials successfully. 

While it is considerate to ask how a patient can most conveniently take in the information at hand, healthcare providers should also assume competence. This means that you should never assume that a patient is not capable of understanding you. Even patients with severe communication restrictions may be able to understand what you are communicating. Many people with disabilities are underestimated regularly, and this should not happen during a healthcare visit. 

Although the above strategies can be especially relevant for patients with disabilities, taking extra care to ensure appropriate education delivery will benefit all patients, as well as the provider. 

Referrals and Supports  

The type of referrals you make will likely differ widely based on your specialty and expertise. However, across the board, it is helpful to consider the day to day experiences of your patients with disabilities to determine whether you are missing a referral that could positively impact their life. 

For example, does your patient have a visual impairment? Consider how this affects their transportation and whether your institution offers any transportation supports. Does your patient have a lot of appointments that they must attend consistently? Consider whether the hospital has a complex care department that can better schedule their appointments conveniently. Would a social worker or counselor be beneficial to your patient? This can be especially helpful if the patient has a new diagnosis or struggles with social issues related to their disability. Taking a few minutes to make these types of referrals can go a long way in helping a patient and improving patient-provider rapport. 

Summary

It can feel intimidating to consider the variety of ways in which patient care is best handled for people with disabilities. However, with a little time and effort, healthcare providers can make strides toward improving healthcare for people with disabilities. To summarize, below are some simple dos and don’ts for interacting with people with disabilities as a provider. 

Dos and Don’ts 

1. Do educate yourself about language. Should you use person-first or identity-first language to refer to a patient? If you aren’t sure, ask the patient! 
2. Don’t be overly negative about a disability or its effects. 
3. Do ask before you touch someone’s personal aids (e.g., wheelchair, walker). 
4. Do address the patient, not just their support person. 
5. Do take extra time to consider referrals that can support the patient outside of the appointment. 

The most important takeaways are to treat people with disabilities with the full respect that all individuals deserve, and if you are unsure about something, always ask. 

References

1. Disability and health overview. cdc.gov. https://www.cdc.gov/ncbddd/disabilityandhealth/disability.html. Updated September 16, 2020. Accessed October 14, 2020. 

2. Person-first vs. identity-first language. educationonline.ku.edu. https://educationonline.ku.edu/community/person-first%20vs.%20identity-first%20language. Accessed October 14, 2020. 

3. Disability etiquette. unitedspinal.org. https://www.unitedspinal.org/pdf/DisabilityEtiquette.pdf. Accessed October 14, 2020. 

4. Communicating with people with disabilities. nln.org. http://www.nln.org/professional-development-programs/teaching-resources/ace-d/additional-resources/communicating-with-people-with-disabilities. Published January 28, 2017. Accessed October 14, 2020. 

5. Inclusive nursing care for people with intellectual disabilities using urology services. International Journal of Urological Nursing, 2007; 1(3): 138-145.

6. Meeting in the middle: improving communication in primary health care consultation with people with an intellectual disability. Journal of Intellectual and Developmental Disability. 2004 Mar; 29(3): 211-225.