In the context of optimizing patient care for Deaf and hard of hearing individuals, healthcare organizations need to prioritize this community’s cultural, social, and linguistic needs across all organizational touchpoints.

These include, but are not limited to the following touchpoints:

• Appointment scheduling
• Patient admission
• Patient orientation
• Obtaining patient history
• Obtaining informed consent/permission for treatment
• Physical examinations
• Providing treatment and instructions to the patient
• Explaining/reviewing advanced directives
• Emergent situations
• Prior to and after treatment/surgical procedures
• Establishing patient’s financial responsibility
• Providing discharge instructions
• Marketing communications

We recognize there are multiple components to drive communication access, cultural awareness, and sensitivity, as well as patient engagement, and we’ll break down each of these elements in the following subsections.

Owning the Process

Across the board, there must be a shift from reactive change to implementing proactive measures. This change in thinking needs to start at the top of your organization.

Too often, the responsibility of addressing the overarching needs of Deaf and hard of hearing individuals is relegated to a single department, most often the interpreting services department.

It is ill-advised to do so, especially as imperative members of the leadership team and relevant stakeholders may not be actively involved in elevating the patient experience for this community.

Furthermore, with reference to the interpreting services department, their knowledge may be limited to interpretation services. As a result, their expertise may not be on the overarching provision of appropriate auxiliary aids and services for signing and non-signing Deaf and hard of hearing individuals, as well as other critical elements impacting the overall patient experience. And even then, some interpreting departments do not have the requisite knowledge base as is to support the effective implementation of interpretation services that meet the nuanced needs of signing Deaf and hard of hearing individuals.

Instead, every member of your organization needs to be committed to creating a more accessible and inclusive healthcare experience. Improving the provision of services and care to Deaf and hard of hearing patients hinges on a shared sense of ownership and responsibility throughout your organization.

To create shared accountability, we recommend putting together a core team that is responsible for optimizing the patient experience for this distinct population in partnership with the appropriate departmental stakeholders. This core team should include members from various departments who can serve as a liaison between their respective departments and the core team.

Recommended departments include:

• Patient Experience
• Patient Relations
• Language Services/Interpreter Services
• Diversity, Equity, and Inclusion
• Risk Management/Compliance
• Social Services
• Procurement

The core team will not be complete without the involvement of Deaf and hard of hearing community members who can offer specific, diverse and unique insights designed to optimize the patient experience.

Leading with a Patient-Centered Approach

It is important to lead with a patient-centered mindset when looking to advance the quality, safety, and experience of healthcare for Deaf, DeafBlind, hard of hearing, and late-deafened patients, companions, and patient representatives.

As it stands, healthcare organizations may not have a full understanding of the cultural nuances and communication needs that impact Deaf and hard of hearing patients’ healthcare encounters.

As described in Part IV, in the context of working with Deaf and hard of hearing individuals, patient-centered care is defined as healthcare organizations ensuring that patient-provider interactions are linguistically accessible and culturally sensitive.

With that said, healthcare professionals must take every step possible to ensure that they are building trust during their interactions with Deaf and hard of hearing patients. As part, patients and their families need to be involved every step of the way and retain autonomy in decision-making.

However, the challenge is that providers and healthcare organizations may consider legal compliance as being the equivalent of delivering patient-centered care. This approach does not set everyone up for success, nor does it maximize healthcare outcomes and improve experiences of care.

To deliver care that is responsive to the Deaf and hard of hearing community’s needs, healthcare organizations need to provide appropriate and adequate training designed to break down barriers and provide truly equitable care to this population. We will define appropriate and adequate training later on in this section.

Assessments

In conjunction with using the HCAHPS (Hospital Consumer Assessment of Healthcare Providers and Systems) survey, we also recommend using a variety of qualitative and quantitative assessments to understand your current state in delivering patient-centered care to Deaf and hard of hearing individuals.

These assessments include, but are not limited to the following:

• Organizational Compliance Assessments: It is important to identify potential exposures and areas of organizational non-compliance as it pertains to the provision of effective communication for signing and non-signing Deaf and hard of hearing individuals. As part, it is critical to ensure established processes and procedures enable language services, including interpreters, CART, assistive listening devices, and other auxiliary aids and services, to be easily and readily available for all signing and non-signing Deaf and hard of hearing individuals.

• Training efficacy assessments: It is important to also ensure your training appropriately addresses the various elements contributing to effective communication with signing and non-signing Deaf and hard of hearing individuals, as well as the nuances necessary to deliver culturally responsive and appropriate care to the Deaf and hard of hearing community.

To best understand your organization’s current state, it is important that your organization aim to collect data and contextual information directly from the Deaf and hard of hearing community as a part of conducting these assessments. As part of this work, we recommend facilitating focus groups with signing and non-signing Deaf and hard of hearing individuals and developing ASL/English-based surveys to obtain the qualitative and quantitative data that your organization needs to inform decisions and move the needle forward.

Strategic Planning, Development and Implementation

As it pertains to improving Deaf and hard of hearing individuals’ experiences and continuum of care in healthcare settings, developing strategic plans and implementing actionable solutions may differ for each organization. However, the underlying principles and priorities shall always remain the same: to provide equitable, accessible, and patient-centered care to the Deaf and hard of hearing community.

In alignment with these principles and priorities, here are some recommendations to incorporate:

• Create bridges with the community: Your organization should continuously seek Deaf, DeafBlind, hard of hearing, and late-deafened patients’ feedback and perspectives on navigating your healthcare system. This will provide a better understanding of the patient experience from their respective lenses and better position your organization to improve patient satisfaction and clinical outcomes as you roll out changes and improvements.

• Centralize efforts for organizational improvements with the core team: As there are many different departments that directly impact the patient experience for this community, including patient experience; language services; patient services; and diversity, equity, inclusion, and accessibility (DEIA), it is important to centralize the improvement of healthcare experiences for the Deaf and hard of hearing community with the core team we referenced previously in this part of the white paper. This can increase administrative efficiency and result in a smoother implementation of your vision and strategy.

• Shift administrative focus: From a top-down approach, it is paramount to shift away from perceiving communication access as an expense. Instead, it is important to invest in Deaf and hard of hearing individuals’ communication needs and, ultimately, their patient experience.

Establishing a feedback loop during this process is of the utmost importance as it will ensure that your organization is not only properly informed, but that any implemented changes will be properly reviewed by the individuals that will be directly affected.

Along these lines, we recommend forming a Deaf and hard of hearing-centered patient and family advisory council (PFAC) that includes diverse representation from the Deaf and hard of hearing community, as well as multiple organizational stakeholders. With respect to organizational stakeholders, this PFAC could include representatives from departments like patient experience, language services, and patient services.

Policies and Procedures

The provision of care is shaped by organizational policies and procedures.

At a minimum, it is important for your organization to ensure signing and non-signing Deaf, DeafBlind, hard of hearing, and late-deafened patients, companions and patient representatives have access to effective communication as defined by applicable non-discrimination laws.

To ensure your organization has the appropriate foundation to remain in compliance, it may be necessary to revise existing and, if appropriate, develop new policies and procedures.

The following are elements that should be incorporated as you look to revise and develop policies and procedures to not only remain compliant, but go above and beyond in optimizing the patient experience for Deaf and hard of hearing individuals:

• List a breadth of appropriate auxiliary aids and services to ensure the overarching needs of signing and non-signing Deaf, DeafBlind, hard of hearing, and late-deafened patients, companions and patient representatives are addressed. Leveraging input from patient and family advisory councils, your organization can understand how the implementation of policies and procedures directly impacts these individuals.

• Establish various points where Deaf and hard of hearing patients are informed of their rights to access auxiliary aids and services. At the same time, it is important to implement internal safeguards and dedicated points of contact for Deaf and hard of hearing patients to connect with to ensure their needs are met (e.g., patient navigators).

• Ensure effective communication is provided during all critical encounters. These encounters are when critical medical information is communicated. This includes the intake and admission process, obtaining medical history, explaining medical procedures, securing informed consent, and patient discharge.

• Discuss primary consideration being given to patients, companions and patient representatives.

• Include processes for assessing and determining which auxiliary aids and services to provide, as well as processes to redetermine and, if needed, adjust the provision of auxiliary aids and services if the original aids and services are ineffective.

• Emphasize who will receive training regarding the delivery of culturally sensitive and appropriate care, as well as who is responsible for the provision of auxiliary aids and services to Deaf, DeafBlind, hard of hearing, and late-deafened patients, companions, and patient representatives.

• Establish clear standards for the procurement and evaluation of auxiliary aids and services.

• Ensure there are designated individuals who oversee the successful implementation of these policies and procedures.

In line with developing and or revamping existing policies and procedures designed to satisfy patients’ diverse needs and preferences, we cannot emphasize enough the importance of making sure signing and non-signing Deaf and hard of hearing individuals are represented as part of the conversation. From a holistic perspective, this will ensure that these individuals’ diverse needs and preferences are taken into account.

Trainings

With respect to the Deaf and hard of hearing community, delivering patient-centered care requires providing your healthcare professionals and administrators with a variety of robust in-person training, webinars, and e-learning courses on topics pertinent to the delivery of culturally sensitive and responsive care to Deaf and hard of hearing individuals.

At a minimum, your training should:

• Provide an overview of your organization’s responsibilities to provide effective communication to Deaf, DeafBlind, hard of hearing, and late-deafened patients, companions, and patient representatives. This should include the provision of auxiliary aids and services that are needed to satisfy the communication needs for signing and non-signing Deaf and hard of hearing individuals should be mandated.

• Explore the dynamics of patient-provider interactions, as well as the wider societal issues that contribute to healthcare disparities and inequities that the Deaf and hard of hearing community experience.

• Discuss how individual and systemic biases impact Deaf and hard of hearing community members’ experiences in healthcare settings.

It is imperative that Deaf and hard of hearing individuals who have subject matter expertise are the ones facilitating the training sessions designed to help your team satisfy the Deaf and hard of hearing community’s cultural, social and linguistic needs in healthcare settings.

Far too often, hearing individuals who work with the Deaf and hard of hearing community provide these trainings. While these individuals may have subject matter expertise, they generally cannot share firsthand experiences in healthcare settings. An exception can be made for training that discusses best practices for working with an ASL interpreter. In this case, an ASL interpreter teaming with a Deaf or hard of hearing individual would provide multiple perspectives on interpreting encounters.