Patient Empowerment

Happy end of summer everyone!

The west coast has had so many smoky days!  The fires have stretched from British Columbia to California, leading to skies that are worse than in Beijing! Thankfully, the sky is clearing, and hopefully our end of summer will not disappoint.
I have been thinking about patient empowerment this summer, and what what it actually means to truly empower someone.

The European Patients’ Forum says:
Patient empowerment is a process that helps people gain control over their own lives and increases their capacity to act on issues that they themselves define as important.

The World Health Organization defines empowerment as: 
“A process through which people gain greater control over decisions and actions affecting their health” and should be seen as both an individual and a community process.
They go on to say:
Four components have been reported as being fundamental to the process of patient empowerment:
1) understanding by the patient of his/her role 
2) acquisition by patients of sufficient knowledge to be able to engage with their healthcare provider 
3) patient skills
4) the presence of a facilitating environment.
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I think we can all get behind this,  but what does it mean in real life? An example:

A woman had cancer that had been successfully treated once, and then had a recurrence, also successfully treated. She then had a second recurrence and had participated in several clinical trials, none of which were adequately treating the disease. When presented with options for further treatment, there was no weighting of the different options, no side-by-side comparison of the efficacy, risks, benefits, and comparison to non-treatment. And that age-old question that doctors hate and patients continue to ask did not come up “what would you do if it were you?”

This was/could be presented to her as evidence of patient empowerment—she was completely free to make whatever decision she wanted. But it was missing some vital parts of what is required for true empowerment:

2) acquisition by patients of sufficient knowledge to be able to engage with their healthcare provider
AND
4) the presence of a facilitating environment

With 3 or 4 choices thrown out and not enough information to understand them, how is that empowerment? Further, the opinion of the doctor is valuable—I have yet to meet an oncologist who didn’t have an opinion about how they would move forward. They may not tell the patient, but it is there. Even the information they don’t know is helpful, because the patient can move on to other criteria to make a decision.  Such as how much is this going to hurt or cause other side effects that negatively impact their quality of life?

In terms of a facilitating environment, this is a place a healthcare advocate can be truly helpful. Exploring the patient’s priorities and understanding their risks and benefits can provide the environment for engaged decision making. Ideally,  the medical team is part of this process, but if not, healthcare advocates can fill the gap.

It is not empowerment to feel lost at sea. That is why we do this work.
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As always, I would love to hear from you about your thoughts.
Sima