For all the talk about patient-centred care, the reality is that patients’ needs and values are often very far from the centre of decisions in health – whether they be decisions related to clinical care, policy or how health funds are spent.
This New York Times article, Letting the Patient Call the Shots, has a few practical suggestions for how to re-balance the power dynamics. It also links to a recent article in the journal Health Affairs by one of the gurus of the international safety and quality movement, Donald Berwick. The abstract is available here but you have to pay to read the full article.
The NYT also interviewed Berwick and here are a few of his comments as reported:
“We have built a technocratic castle, and when people come into it, they are intimidated.
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Patients keep having to repeat their name because the system has no memory. We dress them in silly-looking gowns. We give them the food we make instead of the food they want. We don’t let them look into their medical records unless they have permission.
Health care keeps telling patients the rules instead of asking patients about their individual needs. What is said is, “This is how we do things here,” not “How would you like things done?” People get accustomed to this. They are trained to be passive, and passivity is not a good idea. Studies have shown that people who are trained to be proactive do better and feel stronger. They have more pride and trust in their own capabilities.”
It might be useful if somewhere in all of the current frenzy of health reform work, there was a concerted effort to ensure the views of patients and community were kept centre stage. So much of the discussion is driven by professional agendas and world views which, even if well intentioned, do not translate into patient-centred systems.