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.
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.