Independence versus Empowerment

Fourth of July, which is Independence Day, offers us an opportunity to look at the term independence and what it might mean to us in healthcare. Merriam-Webster defines independence as “the quality or state of not being under the control of, reliant on, or connected with someone or something else.”

In the clinical setting, the application of the above definition in its entirety becomes problematic and may in fact perpetuate certain stigmas or misconceptions many of us in healthcare have strived to dispel.

Unfortunately, in the quest for measurable goals, we tend to primarily look at the “reliant on” portion of the above definition. Our outcome measures primarily focus on the amount of physical or verbal assistance a person needs as a measure of their independence and we sometimes fail to incorporate the wishes of the patient in our goals, thereby not addressing the first part of the definition, “the quality or state of not being under the control of.” This narrative often extends to patients as well who tend to measure their progress solely by their ability to perform tasks without any physical assistance or assistive aids/devices.

Perhaps it may be more beneficial to think in terms of patient empowerment versus independence. Patient empowerment is defined in multiple ways depending on the context. The European Patient Forum (EPF) defines empowerment as a “process that helps people gain control over their lives and increases their capacity to act on issues that they define as important.” In his book Social Welfare Alive, Stephen Moore defines empowerment as “a movement that encourages individuals to take more control of their own welfare and treatment either by forming a partnership with professionals or by seeking appropriate representation of their rights and needs” (Moore, 2002, p. 459).

By promoting empowerment, healthcare professionals can encourage patients to tap into their own internal, community, or environmental resources to improve their health and mobility. However, it is important to recognize that not all patients wish to be ‘empowered.’ It is up to the patients themselves to choose their own level of engagement.

On the flip side, patient empowerment is not about the patient taking full control or shifting responsibility to the patient. Patients seek the expertise of a healthcare professional to help them through what is sometimes an extremely difficult and exhausting journey. Therefore, patient empowerment should never be an excuse for burdening the patient.

One of the fundamental prerequisites to empowerment is patient education and the right to information. Patients make the best decisions when they have the right information. To make genuinely informed decisions about our treatment, we must have access to the relevant information needed to make those decisions. There is research to suggest that educating a patient on the nature of their medical condition and expected outcomes improved participation in their plan of care.

A patient we will refer to as Mr. Smith was seen after an episode of vestibular neuritis resulted in a 100% loss of his vestibular nerve on one side. This led to significant dizziness as well as disruption of his balance. Complicating Mr. Smith’s situation was the fact that he was legally blind with a complete absence of any peripheral vision. However, Mr. Smith did not perceive himself as handicapped prior to the episode of neuritis. In fact, he was gainfully employed and competed in a Bowling league for the Blind. The vestibular neuritis had dramatically increased his perception of being handicapped and he sought vestibular rehabilitation with the expressed desire to return to his bowling league.

We helped educate Mr. Smith on the role of the vestibular system in balance, especially in the absence of vision, the mechanism of vestibular adaptation and neural plasticity, and the barriers to his progress with respect to his visual impairments. Mr. Smith was extremely compliant with his home exercise program as he was fully aware that to achieve optimal adaptation to his vestibular hypofunction, consistency and repetition was essential. The therapist modified his therapy sessions to optimize his return to bowling, and upon discharge, Mr. Smith successfully returned to his bowling league and his perceived handicap on the Dizziness Handicapped Inventory decreased from 86 points to 18 points.

In summary, promoting patient empowerment not only improves functional outcomes and reduces the burden on our healthcare system, it is also the right thing to do. For enshrined in the Declaration of Independence is the all-important phrase, “We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty, and the pursuit of Happiness.”

A very Happy Independence Day to all!