Whose “voice” is it anyway?

We’ve come a long way in recent years – the ‘patient voice’ has taken front stage as a source of guidance and inspiration for health care policy-makers, process engineers and designers.  Incorporating the needs of the patient is also at the center of ‘patient-centered care’ – an approach to care that seeks to account for the patient’s individual biography, culture and capacity.

These intentions have manifested in many ways: religious accommodation, barrier-free accessibility, intuitive way-finding throughout the facility, multilingual communications and documentation. . . institutions are working hard to anticipate patient and family needs in what can be sterile and occasionally frightening environments.

These efforts should be applauded; patients and families surely benefit from any measure that seeks to understand their needs. We should also acknowledge, however, that these are early days.  There is still a long way to go.

To get a sense of the work that remains, we could wonder about the imaginary patient at the center of these initiatives.  Who, exactly, is the ‘patient’- expressed in the singular – in ‘patient-centered’? Is it possible to design buildings and policy around a single standardized patient?  Or, are we assuming that good process will address all possible needs any given patient might have?

I hazard to guess that even the most robust patient-centered policies will still leave people out – not necessarily because of faulty policy but because we are humans, dealing with other humans.

I offer two anecdotes, to illustrate:

A few months ago I attended a book launch for my friend, Donna Thomson. Her book, “The Four Walls of My Freedom”, describes life with her severely disabled son (now a young adult) and frames her family’s experiences through lenses of social justice and equity.  She spoke eloquently and passionately about discovering her voice as her son’s caregiver.  She decided that in order to be the best parent she could be, she needed to claim her own right to a fulfilling life that was not only focused on care for her son.

When Donna finished presenting, the audience had several questions and a pleasant conversation ensued.  Then, the tone noticeably changed when one of the women in the audience started to speak. She was a professional woman (a lawyer, I think) and she self-identified as middle-class. She also had a son with severe disabilities.  In this brief moment in time, the only visible difference between her and Donna was that this woman was not Caucasian.

In a calm and even voice, she shared how it was all well and good to talk about giving yourself permission to pursue your own interests. . .  but her own personal concerns were far more fundamental.  Her experience in institutional healthcare was often one of prejudice and degradation. Attendants in emergency rooms have assumed her child was a ‘crack baby’ or perhaps had fetal alcohol syndrome.  She felt ignored and condescended to, felt that her concerns were diminished. She said that now when she attends any healthcare related appointment for her child she dresses in a business suit to signal that she’s a working professional.

I don’t recall further specifics of her story but she painted a compelling and convincing picture.  I’m embarrassed to say I was kind of stunned; I had never thought about how racial bias might play out in healthcare, or how it might feel to the parent who is trying desperately to advocate for her child.

Within a few seconds a low murmur swelled up in the audience and then many voices chimed in with similar stories.  Some were immigrants, others were born-and-raised Canadians – and all who spoke out had experienced both subtle and overt prejudice in their care.

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My second anecdote is not a specific story but instead general commentary regarding another disadvantaged group: persons with disabilities.

A study published in 1998 (Albercht et al) coined the phrase “disability paradox” to highlight the gap between how people without disabilities perceive the lives of those with disabilities vs how those people with disabilities viewed their own lives. In other words, the study found that people with disabilities are more satisfied with their lives than others would judge.  The authors related this to the individual’s environmental and social context, as well as to the individual’s relationship to his/her own ‘body, mind and spirit’.

In any healthcare setting where a person is identified as being a patient, we might assume that everyone there has a disability – some disabilities are just shorter term than others.  So what does this mean for this discussion? I suggest that anyone in the healthcare setting who is not a patient (doctors, nurses, admin staff) might make assumptions about the plight of the patient they are serving – particularly if there is a pre-existing disability unrelated to the reason for currently being a patient.

I experienced this paradox almost daily – either in relation to my son (who had multiple severe disabilities) or towards myself, as his caregiver. Assumptions about his or my quality of life coloured our interactions, and sometimes took over. We were often seen as sufferers.  Or, if I shared a story about one of our typical family experience (camping, trip to the zoo etc) we were applauded as though we accomplished something remarkable.

I often thought of these interactions as ‘teaching moments’ – an opportunity to educate someone about the ordinariness of our lives, for better or worse.  Good things all around, but surely there are better uses of a family’s time when seeking health care or treatment?

And more importantly, how have these assumptions impacted our care?  Would we, for example, receive less aggressive treatment for an ailment if someone decided that my son was not worthy, or too much of burden?  A good illustration of this bias can be found in recent stories about organ transplant, where life-saving organs have been denied to children with pre-existing disabilities.

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Patient-centered care does often appear to be focused on addressing the needs of the patient – but only if ‘patient’ is defined in a very specific way.

It is indeed an achievement that the ‘patient voice’ is included at many levels of institutional healthcare, but we’d do well to challenge ourselves to broaden this definition – to include everyone, especially those most disadvantaged.