Kris English, PhD
Professor Emeritus
The University of Akron
“Nothing About Me Without Me”
For more than 20 years, patient-centered care (PCC) has been defined by the slogan “Nothing about me without me.” These five words represent years of effort by a grass-roots movement that demanded an end to a “doctor knows best” culture and the establishment of an informed and participatory role for patients.
The Institute of Medicine (2001) has defined patient-centeredness as “Care that is respectful and responsive to individual patient preferences, needs and values, ensuring patient values guide all clinical decisions” (p. 3) Patient preferences, patient values: we can usually glean these perspectives during our intake consultations, but how do we use them to guide clinical decisions? This question brings us to a feature of PCC called shared decision-making, defined as the conversation that happens between a patient and their healthcare professional to reach a health care choice together (Alston et al, 2014). These conversations require advanced counseling skills: active listening, empathy, respect for patient autonomy, a willingness to share control, the ability to find common ground.
Not Yet a Practice Norm in Audiology
Based on our literature to date, shared decision-making (SDM) is almost an orphan topic, although a few tools – decision aids – have been developed to guide balanced discussions through hearing care options and choices (e.g., Laplante-Lévesque et al., 2010; Pryce et al., 2018). While the profession continues to explore SDM, we need to appreciate now how this process can drastically change our clinical conversations.
On the surface, SDM seems straightforward. As described by Alston et al. (2014):
- The clinician shares information with the patient about test results and treatment options
- The patient explores and shares with the clinician his/her preferences regarding these options, and
- After discussion, clinician and patient reach a mutual decision about subsequent treatment.
This template assumes the clinician welcomes and supports SDM. Unfortunately, our available evidence suggests this assumption is not a given (e.g., Ekberg et al, 2015; Grenness et al., 2015). Our limited research has also only focused on decisions related to hearing aid acceptance and options. However, there are other SDM opportunities in an audiology appointment, and these could be easily overlooked.
Example: SDM and HA Orientation
Consider the moment when hearing aids are first fitted. If only from habit, our interactions could disregard patients as decision-makers and rely on directives and advice-giving. For example:
| Standard Instructions? | Shared Decision-Making (SDM) |
| 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? |
| It’s normal to dislike the sound of your voice, but you will get used to it. | Let’s start by giving it a little time. How many 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. |
| 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 here now, but let’s anticipate noisy situations. What might those be in your life? …I have some brochures on easy communication strategies. If they fit your situation and you have an opportunity to try them out, let’s talk about it next time. |
A student exercise: How do these comments differ? How might a patient respond/react to each, and why? What counseling/communication skills do you recognize? These essays provide some relevant background:
- Audiology counseling and patient-centered care, Part 4/5: Common ground
- From person-centered moments to person-centered culture
- Counseling thyself: “Did I really say that?”
- Balancing power in patient relationships
Conclusion
The point of the slogan “Nothing about me without me” is to include the patient in every decision, not just the obvious one (for audiology) regarding amplification. Ultimately, each patient is “an autonomous decision-maker” (Pryce et al., 2018, p. 638); if patients do not participate in hearing aid management decisions, they may decide to do nothing. Even without decision aids, we can use counseling skills to develop shared decisions now.
Acknowledgement: My appreciation to Ida Institute for sharing helpful materials.
References
Ekberg, K., Grenness, C., & Hickson, L. (2015). Addressing patients’ social concerns regarding hearing aids within audiology appointments for older adults. American Journal of Audiology, 23, 337-350.
Grenness, C., Hickson, L., Laplante-Lévesque, A., Meyer, C., & Davidson, B. (2015). The nature of communication throughout diagnosis and management planning in initial audiologic rehabilitation consultations. Journal of American Academy of Audiology, 26(1), 36-50.
Laplante-Lévesque, A. et al. (2010). Factors influencing rehabilitation decisions of adults with acquired hearing impairment. International Journal of Audiology, 49, 497-507.
Pryce H. et al. (2018). Shared decision-making in tinnitus care – An exploration of clinical encounters. British Journal of Health Psychology, 23, 630-645.