Guidance on Providing Patient-Centered Care

Abstract

This article explores the clinical applications of Audiology Practice Standards Organization (APSO) Standards 2 and 13, both of which keep us fully focused on the patient-as-person. The topics within Standard 2 include audiologists' interpersonal communication skills, specifically clarity (ensuring patient comprehension) and empathy (understanding the patient's experiences). Standard 2 also addresses the topic of health literacy, which has been recently expanded to consider not only the degree to which individuals are able to find, understand, and use information and services to inform health-related decisions but also how organizations equitably support those necessary skills. The characteristics and benefits of services provided in patient- and family-centered care contexts are also described. Standard 13 addresses audiologists' support toward overall successful adjustment as defined by the patient, including both technical and personal adjustment to amplification, nontechnical communication issues, and rehabilitation support using readily available technologies. A new assessment protocol that includes goal setting and intervention is described, as well as a patient-centered intervention strategy involving discussion of personally meaningful photographs. Both standards provide a necessary balance to our technology-reliant profession.

STANDARDS DISCUSSED

• 2. Patient communication is conducted in a clear, empathetic manner consistent with the patient's communication mode, comprehension, and their health literacy level. Patient-centered and family-centered care is provided. The patient is encouraged to include communication partners (e.g., family members, significant others, companions) throughout the selection, fitting, and follow-up process.

• 13. Counseling is conducted to ensure appropriate adjustment to amplification and to address other concerns regarding communication. Additional rehabilitative audiology is recommended if deemed appropriate.

The Audiology Practice Standards Organization (APSO)'s Hearing Aid Fitting Standard for Adult and Geriatric Patients ¹ is a welcome contribution to audiologic practices. The more audiologists can provide consistent care overall, the better, especially considering increased calls to address healthcare disparities by minimizing or eliminating clinical discretion. ^{2 3 4}

A review of the 15 APSO standards indicates two characteristics typical for audiology:

1. 1. Most of the hearing aid fitting standards are procedural, designed to ensure consistent practices and quality control.

2. 2. Most of these standards can be described as technocentric and data-reliant ; in other words, without the appropriate technology and the data it yields, the standards cannot be met.

Obviously, technology and data are essential to audiologic care; however, in the process, audiology practices can lose sight of the patient-as-person, and when patients do not experience a personal relationship, they are less likely to accept provider recommendations. ⁵ An audiologist's “people skills”—understanding patients' emotional states, fear of stigma, resistance to change, and other “soft” datasets—cannot be taken for granted; for instance, from data collected from an emotional intelligence scale, Amlani ⁶ found that “audiologists are falling short in creating a positive emotional communication relationship, which might be a factor in why impaired listeners are not adopting audiologic services and technology.”

This article will develop Standards 2 and 13, which are designed to address patient-centeredness. Each APSO standard is dense with meaning, and Standards 2 and 13 are no exception. They will be broken down into components and elaborated upon, one concept at a time.

First, a clarification of terms is needed. As is customary in the United States, the APSO Standards refer to recipients of audiologic care as “patients,” and for the sake of consistency, throughout this article the term “patient-centered care” will be used. However, a recent “review of reviews” makes a compelling case for the term “person-centered care.” ⁷ While both models of care include similar values (empathy, respect, engagement, shared decision-making [SDM], etc.), the authors' analysis identified an important difference: “the goal of person-centered care is a meaningful life while the goal of patient-centered care is a functional life.” The philosophical difference is not insignificant, and likely impacts audiology training and practices. Here, the term “person-centered care” will only be used when cited research uses the term.

APSO STANDARD 2

Standard 2 : (a) Patient communication is conducted in a clear, empathetic manner (b) consistent with the patient's communication mode, comprehension, and their health literacy level. (c) Patient-centered and (d) family-centered care is provided. The patient is encouraged to include communication partners (e.g., family members, significant others, companions) throughout the selection, fitting, and follow-up process.

Standard 2 consists of four components. Although not expressed in so many words, the underlying goal of this standard is to communicate our professional values to the patient, learn about the patient's values as well their goals and reservations, and, in a relatively short time, develop a trust-based relationship.

2a. “Patient communication is conducted in a clear, empathic manner…”

Our expressive communication skills give patients their first impressions of us. From the beginning and throughout each appointment, our communication strategies include using layman vocabulary and clear speech techniques, ⁸ as we make sure to face the patient and speak within near proximity in a well-lit environment with little or no background noise.

Communication being a two-way endeavor, obviously when we are not speaking, we are listening; importantly, listening “in an empathetic manner” means more than just gathering facts and details about a patient's concerns. Empathy involves attending to how those concerns affect each patient's uniquely personal experiences of living with hearing loss, and responding with concern accordingly, or as Coulehan et al ⁹ put it, to “understand the patient's situation, perspective and feelings, and to communicate that understanding to the patient” (emphasis added). Empathetic clinicians communicate understanding by encouraging patients to express the emotional impact of hearing loss, and supporting them as they identify and label those emotions. Empathy is conveyed by accepting and validating patient emotions both verbally and nonverbally. ¹⁰ These empathetic skills can be measured by validated assessments such as the 4 Habits Coding Scheme. ^{11 12}

2b. “… consistent with the patient's communication mode, comprehension, and health literacy level.”

A patient's communication mode could include exclusive or mixed use of oral speech, speech reading, sign language, and cued speech, with an interpreter as needed. A communication mode appropriate for each patient does not ensure comprehension, of course. Within a limited timeframe, audiologists provide explanations, information, and directions, and our success in doing so is underpinned by our skill as health educators. This responsibility has long been guided by the maxim, “Just because we explained it, doesn't mean it was understood.” There is an inherent risk of confusing a patient as we speak, or even asking, “Do you understand?” (to which most patients will say “yes” rather than admit they don't).

Among the range of effective patient education strategies, arguably the easiest to implement is a simple strategy called the “teach back” method. ¹³ For instance, after explaining test results, the etiology of hearing loss, or our treatment recommendation, we would ask patients to explain their understanding of our explanations back to us; for example, “Before we move on, could you tell me how you would explain these details to a friend or family member?” Patient's teach-backs actively engage the patient-as-learner, while informing us if any misunderstandings or confusions exist, and keeping us accountable for our teaching—and of course we already use this strategy with initial device orientations when we ask patients to demonstrate back to us how they will insert/remove devices, change batteries, etc.

The consideration of patient health literacy levels is relatively new to audiology, and yet vitally important. Healthy People 2030 ^{14 15} provides two new definitions for health literacy, to address both the personal and the organizational levels:

Personal Health Literacy is the degree to which individuals have the ability to find, understand, and use information and services to inform health-related decisions and actions for themselves and others.

Organizational Health Literacy is the degree to which organizations equitably enable individuals to find, understand, and use information and services to inform health-related decisions and actions for themselves and others.

These updated definitions emphasize individuals' ability to use health information rather than just understand it, while acknowledging that organizations also have a responsibility to actively address health literacy.

Health literacy involves not only understanding health information but also the ability to interpret graphs, do basic calculations, and use a computer. ¹⁶ A patient's health literacy cannot be taken for granted; in past studies, more than one-third of adults in the United States (77 million) demonstrated limited (basic and below basic) health literacy skills. Persons at basic/below basic literacy levels will struggle to understand written instructions, complete scales and questionnaires, or provide a medical history. ¹⁴ Health literacy skills are affected by age, education, income, health insurance status, and first language acquisition. But as Weiss ¹⁷ warns us, “You can't tell by looking.”

We must ensure our written material (handouts, brochures, and Web sites) does not create barriers for the many patients who have little or no background on our topics. The more accessible the written content, the more readily a patient will understand, remember, and use the information. The conventional recommendation for written materials is to write the content at a 4th grade reading level if possible, and not to exceed 8th grade. Reading levels can be confirmed by pasting content to a “readability-score” Web site. If the score is too high, look to shorten sentences, simplify grammar, and use everyday vocabulary. When unusual or complex words are unavoidable (e.g., sensorineural), add a glossary at the end. The U.S. Department of Health and Human Services ¹⁸ has developed a guide to writing and designing easy-to-use health Websites specifically written to address the goals of health literacy.

Throughout our patient education moments, we need to keep the patient's comfort level in mind. As we share information, patients are thinking as well as responding emotionally, perhaps with anxiety or distress. One cannot understand or retain new information in a distracting emotional state, for example, feeling upset, afraid, overwhelmed, or disappointed. If we perceive distress, our educational efforts should be deferred until patients indicate their readiness to continue.

These considerations regarding health literacy are extrapolations from general health care literature. To date, there is no research indicating audiology's effectiveness in patient education and applying basic principles of health literacy to clinical practice.

2c. “Patient-centered care …”

Before moving on, we need to pause for a clarification. A review of the complete set of APSO standards indicates the highly appropriate emphasis on individualized care, either literally (Standards 3, 4, and 11) or inferentially (e.g., Standards 5, 6, 7, and 8). Individualized care is synonymous with personalized care, which regrettably is often confused with person-centered care. A recent example can be found in the World Health Organization's ¹⁹ “World Report on Hearing,” which includes a figure with the caption, “Person-Centred Ear and Hearing Care.” The care components include obtaining a case history (otology status, audiologic profiles, and other health issues), determining communication needs and preferences, and identifying the patient's available resources. Although each patient's needs will be appropriately personal , these data points can be collected and treated with no application of person-centered care principles.

Another way to frame the differences: personalized care is the “what,” and person-centered care (or, as used in this APSO standard, patient-centered care) is the how . The Institute of Medicine ²⁰ provides the missing dimension to merely personalized care, that is, patient-centeredness means “providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions” (emphasis added).

To ensure that patient values guide all decisions, audiologists need to inquire about and document those values. Each patient's values will be unique, but will usually include some mix of loved ones, community, occupation, interests, self-identity, and personal health. Patient-centered audiologists weigh a patient's “value narrative” as important a data point as health history or lists of medications. ²¹ Value narratives are elicited with exploratory conversations of self-assessment responses, open-ended questions, validations, confirmations, and more. ²² The “Patient-Centered Observation Form” ²³ provides suggestions on how to learn more during these conversations, including the following:

• Using continuer phrases (“Hm-mm, OK”) and attentive body language.

• Validating emotions (“You're worried about changes; it sounds like you were uncomfortable?”).

• Eliciting more input (“Could you help me understand with an example? Anything else?”).

• Confirming what is most important (“So let me confirm: you indicated the following problems need our attention…”).

There is a need to clarify that “ensuring that patient values guide all decisions” per the IOM could be incorrectly interpreted to mean that decisions, even though guided by patient values, are still ultimately made solely by the clinician. Unilateral decision-making is inconsistent with patient-centeredness; more appropriate is a SDM process. SDM is often facilitated by decision aids, designed to fully inform patients of their options, help them consider their values relative to the pros and cons of each option, and provide a foundation for patient–clinician relationship building. Several decision aids that focus on hearing care treatments have been described in the literature. ^{21 24 25}

2d. “…and family-centered care is provided. The patient is encouraged to include communication partners (e.g., family members, significant others, companions) throughout the selection, fitting, and follow-up process.”

The first point to clarify in this subsection is the word family , which has for years been accepted to include not just biological or legal relationships but also “any group of intimates with a history and a future.” ²⁶ Family-centered care (FCC), then, has been defined by the Institute for Patient- and Family-Centered Care ²⁷ as mutually beneficial partnerships between health care providers, patients, and their families in health care evaluation, planning, and delivery of services. A recent scoping review identified key components to FCC, which included consideration of the family context, inclusion of family input, and collaboration with family members regarding treatment. ²⁸

The value and benefits of including family (as defined by the patient) throughout the audiologic clinical experience has been well documented. ^{29 30 31 32} Providing family-centered hearing care keeps us focused on the reality that hearing loss is a shared or “third-party” disability, defined as the impaired functioning of family and friends due to the health condition of their significant other. ³³ The impact of hearing loss on family was highlighted by Scarinci et al, ³⁴ indicating that 98% of the family–member participants in their study ( N  = 100) reported some degree of third-party hearing disability.

As obvious as it may seem to include family in audiology appointments, it has not been found to be a typical practice. When family members do attend, audiologists may not know how to include them. For instance, Ekberg et al ³⁵ found that even when family members were seated in the room, they were not typically invited to join the conversation. Family members did find ways to interject by answering for the patient and asking their own questions, but when they did, audiologists quickly redirected conversation back to the patient.

Common perceived barriers include insufficient time for family engagement ³⁶ or the risk that including families will cause tension. ³⁷ Objections aside, family members have been shown to have a positive influence on appointments. ^{38 39} As Amlani ⁶ reports, “Evidence supports the notion that adopting amplification is influenced positively in first-time users when a family member/friend participates in the acquisition process.”

Singh et al ⁴⁰ offered 10 suggestions on how to transition to FCC. Since change is not easy, it is recommended to start with the first three:

1. Invite a family member along to audiologic appointments. When making appointments say: “Our experience is that it is very helpful if you can bring a friend or a loved one along to the appointment. Who would that be?” If patient asks for more information, we could say “There is a lot to discuss and it helps to include family and friends in the process.” This information should be reinforced in any written information provided to patients regarding appointments.

2. Set up the physical environment so that family members are comfortably included in the consultation rather than being relegated to a seat at the back of the room. An inclusive physical environment fosters a sense that everyone can equally provide their thoughts and perspectives.

3. Start the appointment by letting the patient and the family member know that input will be sought from both of them—patient first and then the family member. The clinician could say “We are going to do a lot today. For the next 10 minutes, I want to find out about your hearing and communication (directed to the patient) and then I want to find out about this from your perspective [directed to the significant other].” The goal is to listen so as to attain an integrated understanding of the patient's and family's physical, social, and emotional needs.

Decision aids as described earlier can be an effective way to help patient and family talk about problems and consider solutions. ⁴¹ Ekberg et al ⁴² have also considered FCC barriers occurring at the staff level, and provide suggestion on how to address them.

Summary : Standard 2 ensures the audiologist focuses on the patient-as-person with these key skill sets: effective and empathic communication, an understanding of health literacy levels, and patient- and family-centeredness. Its singular focus on the patient brings to mind the maxim attributed to U.S. President Theodore Roosevelt: “People don't care how much you know until they know how much you care.”

The next section considers Standard 13, which also incorporates patient-centered aspects of audiologic care: supporting patients' journeys as an adjustment process, addressing their concerns, and providing a range of rehabilitation measures designed to meet each patient's goals and needs.

APSO STANDARD 13

This section considers the three components of Standard 13, all of which extend the concept of person-centered care principles.

Standard 13 : (a) Counseling is conducted to ensure appropriate adjustment to amplification (b) and to address other concerns regarding communication. (c) Additional rehabilitative audiology is recommended if deemed appropriate.

13a. “Counseling is conducted to ensure appropriate adjustment to amplification ….”

Patient-centered care principles help us understand “appropriate adjustment” as a mutually satisfactory conclusion to a joint goal-setting process. Each party has a set of goals, but without an open and candid discussion, the goals may not be compatible. For instance, an audiologist's clinical goals typically include consistent and successful hearing aid use, acceptance of recommended device settings, and overall patient satisfaction (per APSO Standard 14). However, even when those goals are met, patients may still not experience “appropriate adjustment” if they are burdened by stress, discouragement, or pressure from family members who expect a “cured” outcome. ⁴³ Their own adjustment goals may focus on concerns about stigma, self-efficacy, or other emotional stressors. ^{44 45 46} Both the technical and personal dimensions of adjustment must be addressed.

Table 1 compares a set of standard instructions for a hearing aid orientation to a joint goal-setting approach. ⁴⁶ The standard approach includes directives which leave no room for patient goals, and signals an expectation of patient compliance. In comparison, the joint goal-setting examples would optimally result in a realistic treatment plan outlined by the clinician and “filled in” by the patient, to include choices, control, and decisions.

Table 1. A Set of Standard Hearing Aid Orientation Directions Compared with a Person-centered Joint Goal-setting Conversation.

Standard instructions	Joint goal-setting
You will need to wear these new hearing aids at home and every other possible environment before your next appointment	Our best practices recommend listening with hearing aids as much possible. What would that look like for you? Are there specific situations you'd like to start with? What would be a manageable target of hours of use per day during the next couple of weeks?
It's normal to dislike the sound of your voice, but you will get used to it	How many more days would you like to try to get comfortable with your voice? After that trial period, call or email and let me know how you're doing. Then we can figure out next steps.
You'll realize that what you thought was “people mumbling” is really your hearing impairment	Earlier you mentioned “people mumbling.” Are you interested in testing those impressions? It'd help me confirm if these devices are helping. Your observations would be invaluable.
You will still have problems in noise. It's unavoidable	It's quiet in our space now, but let's think about noisy situations. What might those be in your life? … Would you be comfortable trying some easy communication strategies?

Source: Adapted from English K. Shared decision-making requires counseling skill. AdvancingAudCounseling.com. Available at: http://advancingaudcounseling.com/sdm . Published July 8, 2019. Accessed June 24, 2021.

13b. “… and to address other concerns regarding communication.”

To determine additional communication concerns, audiologists typically collect patient data about situational or other communication concerns via a self-assessment, including classic tools such as the Hearing Handicap Inventory for Adults, ⁴⁷ the Hearing Handicap Inventory for the Elderly, ⁴⁸ and the Self-Assessment of Communication. ⁴⁹ It has been long advocated that self-assessments are most effective when used as a springboard toward goal-setting and intervention conversations, ^{50 51} but this follow-through depends on the audiologist's decision to do so.

A recent study addresses this potential breakdown. The Quebec Audiological Assessment Protocol for Younger and Older Adults ⁵² expands a conventional self-assessment into a needs assessment protocol, which naturally lends itself to goal setting and intervention planning beyond the routine recommendation for amplification. The needs assessment applies the International Classification of Functioning, Disability and Health (ICF) ⁵³ to explore a patient's audiological needs (activity limitations, participation restrictions, and environmental factors), as well as his or her living conditions (social networks and living environment), and personal factors (motivation, dexterity, cognition, etc.). The needs assessment also includes SDM and joint goal-setting regarding treatment:

“Taking into consideration all the information obtained to this point, the audiologist is now ready to engage in a discussion and negotiation concerning the treatment program that may be appropriate for the client. Consistent with the principles of a client-centered approach, during this negotiation phase, the audiologist should consider the client as a full, equal partner…. In accordance with client-centeredness and the principles of the ICF, the recommendations should be consistent with the conclusions reached with the client.”

This approach exemplifies the goal of patient-centeredness. ⁵⁴ It is also fully consistent with two themes identified in Bennett et al's survey results collected from patients and audiologists about perceived benefits of patient-centered rehabilitation: “promoting patient responsibility” (outcomes being dependent on active involvement) and “client empowerment” (self-efficacy, taking control of the rehabilitation process). ⁵⁵

An example of a simple intervention that supports these goals is called “photovoice,” wherein patients who are comfortable taking pictures with cellphone cameras are invited to take photos of events and situations throughout their week and email them to the audiologist, with a sentence briefly explaining what the picture meant to them. ⁵⁶ The photos serve as the focus of subsequent appointments, providing personalized context for communication concerns. In addition to working out some problem-solving strategies, patients also report the process prompted personal growth experiences such as increased awareness of listening challenges, more mindfulness of better hearing when hearing aids were in use, becoming comfortable with discussing hearing loss with people they were photographing, and engaging family members more in their adjustment process.

Some patients may not wish to share personal pictures or do not have access to cell phone cameras; however, similar therapeutic conversations can still be supported by providing pre-developed materials. The Ida Institute (idainstitute.com) has created a rehabilitation tool called “Living Well,” which consists of sets of photographic representations of a wide variety of daily experiences.

13c. “Additional rehabilitative audiology is recommended if deemed appropriate.”

Boothroyd's ⁵⁷ widely referenced article, “Adult Aural Rehabilitation: What Is It and Does It Work?” prompted audiologists to think beyond a narrow instructional skill-based approach (e.g., developing speech reading, listening, and self-advocacy skills) toward a holistic definition as “the reduction of hearing-loss-induced deficits of function, activity, participation, and quality of life through a combination of sensory management, instruction, perceptual training, and counseling.” Importantly, patients concur: when asked what they would like to see included in audiologic rehabilitation (AR) programs, in addition to education, adults with hearing loss have recommended psychological support to include building confidence, assertiveness training, self-esteem, stigma, coming to terms with hearing loss, and realistic expectations. ^{45 58}

Providing additional rehabilitation in the United States has been historically limited by time, space, and compensation constraints. Fortunately, technological advances have expanded our options for delivery of and access to AR support. Wireless networks, smart phones, tablets, and dedicated apps now support self-managed mHealth (i.e., the delivery of healthcare by mobile technologies). ⁵⁹ Apps come and go, but at the time of this writing, an app called “Speech Banana for Auditory Training” is an example of innovative ways to provide mHealth support based on a validated curriculum. ⁶⁰

Telerehabilitation appointments can support patients who prefer self-guided learning, for instance, independently with an Individualized Active Communication Education (I-ACE) program, ⁶¹ or with a communication partner. ^{62 63} Remote-delivered auditory training support designed for cochlear implant recipients ⁶⁴ should be evaluated for applicability to hearing aid users. And finally, patients should be informed of relevant organizations which offer a wealth of rehabilitation information for persons with hearing loss on their Web sites, social media, and email forums. ⁶⁵ In response to the global COVID-19 pandemic, many organizations converted face-to-face conferences and chapter meetings to virtual formats, ⁶⁶ and because of the convenience and cost-savings, are likely to continue to do so.

Summary : In 2019, Ferguson et al ⁶⁷ responded to Boothroyd's query about AR to report on the meaningful advances made in AR delivery (e-health, self-management) and outcomes (patient knowledge, skill development, and auditory-cognitive training). Audiologists must stay abreast of these advances to meet their patients' rehabilitation needs.

CONCLUSION

APSO Standards 2 and 13 succinctly identify key characteristics of patient- and family-centered care principles as applied to audiologic practices. For the purposes of discussion, these characteristics have been presented as standalone skills, but audiologists know their goal and responsibility is to integrate all components into a seamless whole, including mindfully balancing technology with our patients' personhood.