Previously
in this
space, we discussed a prescription
for an ailing healthcare system from the European Patients' Forum: patient
empowerment. Health
Education: patients can make informed decisions about their health if they
are able to access all the relevant information, in an easily understandable
format. Is this
true? Yes. It is
easy to underestimate patients, especially those who live in poverty. From being a single mom with a high
school education and limited skills,
I can tell you that basic essentials —adequate calories, a safe place to
sleep, money to keep the electricity on, shoes that fit, keeping a junker car
running, just getting through the day— come before organic vegetables,
exercise, and seeing the doctor for that nagging back pain. Getting by leaves
little time to study an insurance policy to figure out what's an EBO and
or a deductible or a network provider. Moms almost always find time for baby care, rarely for
self-care. When patients are
consistently stressed and distracted by daily life, it's easy to view them as marginally
competent and under- motivated to make informed decisions. True, but… Access
to all the relevant information…. No one in
the US has all the relevant information needed to make informed health
decisions. Insured or not,
patients have no way to evaluate the skill or knowledge of the provider,
or the reliability of a diagnosis.
Patients and providers rarely know the price of services or drugs. Treatments have risks. Results are
uncertain. Conflicting opinions and recommendations abound. Medical knowledge
changes daily. When you buy a car, you can read all the relevant information on
the sticker in the window.
Information about healthcare is incomplete and fluid at best. It's
easy to rely too heavily on information. Even if it's easy to understand, finding time and a
quiet place to absorb it, and the energy to interpret it in the context of
complex, often chaotic everyday lives is a challenge in itself. Acting on
information requires much more than personal skills, knowledge and
motivation. For example: A key
heath message for pregnant women (and everyone else) is to "eat well and
often". This is easy to
understand. Everyone wants to do it. But it is impossible in many poverty
neighborhoods, especially near month-end when money and food stamps run out. Informed
vs appropriate decisions It is providers' challenge to respect and support
patients' informed decisions. It is easy to think that a patient makes inappropriate decisions because they
lack knowledge— they are uninformed; if they just understood, they would
take appropriate action. The
question here is: Appropriate for whom? And who says? What is
medically appropriate may be practically impossible due to cost or distance or
family dynamics. It may be culturally unacceptable. It may conflict with the
patients' practical knowledge and experience. I recall observing a Somali woman
in my county hospitals' international clinic. Standing tall and lovely in
yellow traditional dress, 40 weeks pregnant with a toddler clinging to her
skirts, she quietly, confidently, patiently refused several providers' efforts
to educate, persuade or frighten her into consenting to induction of labor.
"The baby will come when the baby is ready", she repeated. She
understood the information presented to her in various ways. She evaluated the information and made
an informed choice that, in western medicine, was inappropriate. Empowerment
does not always look like compliance. And unquestioning compliance constitutes
neither health literacy nor empowerment.
The best
information & education can achieve health literacy only with 1) direct support to make
personal meaning from the information and act on it in real life; and 2) laws,
policies, built environments that make the right choice the easy choice. When we
promote patient choice, we must acknowledge the conditions in which those choices will be
made and carried out. Then we must respect patients' choices and adapt
healthcare services accordingly. |
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CategoriesHealth LiteracyMaternal Child Health Test |
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