31 Equity for all: providing accessible healthcare for patients living with disabilities

Michelle L. Blakely, PhD, MEd, NCC

Sharon E. Connor, PharmD

Jennifer Ko, PharmD, MPH, BCACP

Introduction

According to the Americans with Disabilities Act Amendments Act (ADAAA), disability is defined as “an impairment that substantially limits one or more major life activities, a record of such an impairment, or being regarded as having such an impairment.”¹ The World Health Organization (WHO) and the International Classification of Functioning, Disability, and Health (ICF), which provides a framework for the measurement of functioning and disability, defines disability as an “umbrella term, covering impairments, activity limitations, and participation restrictions.”² Approximately 26% or 61 million adults in the United Sates currently live with a disability.³ For some patients, especially those with disabilities, obtaining access to healthcare services as well as communicating with healthcare professionals can be an extremely challenging experience. A lack of proper access to healthcare services and/or ineffective health communication may lead to poor patient understanding of their health and current/potential treatment options, low quality of life, and negative health-related outcomes.

The term “disability” encompasses diverse categories of impairments, activity limitations, and restrictions which includes visual impairment, hearing impairment, motor impairment, cognitive/learning impairment, and speech disabilities or difficulties. While each of these categories are defined differently by various agencies, generally recognized definitions/descriptions can be found within the Individuals with Disabilities Education Act (IDEA). According to IDEA, an individual has a visual impairment if they experience vision loss that cannot be corrected. Hearing impairments, on the other hand, can be permanent or fluctuating, with deafness specifically defined as having a severe form of impairment in the ability to process linguistic information through hearing. Motor impairment involves the partial or complete loss of function of a body part, while cognitive or learning impairment is defined as “a disorder in one or more psychological processes that are important for understanding and using language”. Finally, speech or language impairment is defined as a communication disorder and includes stuttering and voice impairment, for example.⁴ However, this is by no means a comprehensive list of all of the disabilities that individuals experience, and they may not always be readily apparent to others. Indeed, there are many individuals who have less obvious disabilities that are “hidden” or “invisible.” Finding one standard definition of a hidden/invisible disability is a challenge and finding resources for these patients can be more challenging. Consequently, there is much advocacy for people with this type of disability.

Regardless of the type, individuals with disabilities may encounter their own unique set of barriers that can hinder healthcare access. It is important to see each patient as an individual and tailor care to each person’s specific preferences and needs. It is vital that healthcare professionals obtain the requisite education and knowledge to provide appropriate health services to individuals with disabilities. Improving healthcare professionals’ competence and skills in providing care to and communicating with patients with disabilities will increase patients’ knowledge of their health care and associated treatments,⁵ ensure safer medication use, and optimize patient health-related outcomes.⁶

Case

CC: “My wife is here for an appointment.”

Patient: MC is a 63-year-old female (64 in, 73 kg) who presents with her husband for an appointment. The patient is smiling and engaged but turns to her husband when you begin to ask questions. You see that the patient is communicating with her husband with sign language.

HPI: Per the medical record, MC was started on insulin about one month ago due to uncontrolled diabetes after about five years of oral medications. You notice that she has not started the insulin because she brings all her medications to the appointment and the insulin and supplies are not included.

PMH: T2DM, HTN, hyperlipidemia, allergic rhinitis

FH:

• Married with three adult children
• Father: deceased (age 72 from MI)
• Mother: alive; HTN, hyperlipidemia

SH:

• Denies ever having used tobacco
• Denies illicit drug use
• Husband is a current smoker (20 pack-year history)

Medications:

• Basaglar 10 units subcutaneously daily
• Metformin 1000 mg BID
• Glipizide 10 mg BID
• Lisinopril 40 mg daily
• Atorvastatin 40 mg daily
• Aspirin 81 mg daily
• Cetirizine 10 mg daily

Allergies: NKDA

Vitals:

• BP 128/79 mmHg
• HR 72 bpm
• RR 18/min
• Temp 98.6°F
• Pulse ox 97% on RA

Labs:

Surgical history: N/A

SDH: The patient is currently uninsured. She works part-time and has a family income of approximately $1800 per month.

Additional context: MC is deaf and communicates with her husband using sign language. The patient’s husband says that they both need some help in accessing a new medication. After you develop some rapport with the couple, while trying to understand the challenges to medication access and working through some paperwork, the patient’s husband states that he is unable to read.

Case Questions

1. What concepts or techniques can be used when communicating with MC to ensure her complete understanding?

2. How can you approach the topic of how the patient prefers to communicate?

3. What are some barriers to health that MC has?

4. What resources can you recommend to MC to help her navigate barriers to care?

5. What are strategies can you implement to improve MC’s healthcare experience?

6. How can your healthcare organization improve the way that they provide care for patients with disabilities? What policies/laws exist to assist individuals with disabilities?

Author Commentary

The National Center for Health Statistics reports that approximately 37.6 million adults have some level of hearing loss/impairment.⁷ Hearing loss/impairments can present barriers to effective healthcare delivery by pharmacists. Research has shown that pharmacists may not be not fully prepared to understand or serve patients who are deaf or hard of hearing.⁶ Deaf/hard of hearing patients have reported being uncomfortable during interactions with pharmacists, along with fear, anxiety and mistrust toward the overall healthcare system.⁸ Pharmacists and student pharmacists can improve patient interactions with individuals who are deaf/hard of hearing by utilizing effective communication practices as a whole, like using direct eye contact and speaking to the patient as much as possible, not the caregiver or interpreter. Helpful resources like the guide on communicating with hard of hearing/deaf patients developed by Hearing Loss Association of America can inform pharmacists about things they should do when communicating with patients. Training that focuses on providing care to patients with hearing loss or impairment and other disabilities can and should be incorporated throughout the pharmacy curriculum.

Insufficient communication between pharmacists and deaf/hard of hearing patients will hinder the establishment of rapport.⁹ A strained pharmacist-patient relationship can lead to the widening of healthcare disparities and exacerbation of negative treatment outcomes or may result in lack of knowledge of important health issues and/or avoidance of care altogether.^8,9 Therefore, reducing or eliminating the barriers to healthcare access for deaf/hard of hearing patients is crucial for successful and effective healthcare interactions.

Patient Approaches and Opportunities

To effectively care for a patient with a disability, it is imperative that the healthcare professional first ascertain the patient’s preferred mode of communicating. Then, to the extent possible, the healthcare professional should honor the patient’s request to communicate in that mode for the duration of the interaction. Patients may prefer to use pen and paper, lip read, visual demonstrations (when applicable), a communication app or other type of assistive technology to communicate. Hence, there are a variety of different modes of communication for patients with disabilities, and identifying and using the one that the patient prefers will help provide a more successful patient encounter. Table 1 discusses additional barriers to health for patients with disabilities and strategies that can be used to enhance patient access. Some tips for developing effective health communication materials for patients include: (1) use plain language; (2) limit information to three to five key points; (3) be specific and concrete; (4) use visuals; (5) include a summary that repeats the key points; and (6) use positive, hopeful, and empowering language.

Table 1. Barriers to health and strategies to enhance access^10-12