There are several stages in becoming an empowered, engaged, activated patient – a capable, responsible partner in getting good care for yourself, your family, whoever you’re caring for. One ingredient is to know what to expect, so you can tell when things seem right and when they don’t.
Researching a project today, I came across an article published in 2006: Key Learning from the Dana-Farber Cancer Institute’s 10-Year Patient Safety Journey.* This table shows the attitude you’ll find in an organization that has realized the challenges of medicine and is dealing with them realistically:
“Errors are everywhere.” “Great care in a high-risk environment.” What kind of attitude is that??
This work began after the death of Boston Globe health columnist Betsy Lehman. Long-time Bostonians will recall that she was killed in 1994 by an accidental overdose of chemo at Dana Farber. It shocked us to realize that a savvy patient like her, in one of the best places in the world, could be killed by such an accident. But she was.
Five years later the Institute of Medicine’s report To Err is Human documented that such errors are in fact common – 44,000 to 98,000 a year. It hasn’t gotten better: last November the US Inspector General released new findings that 15,000 Medicare patients are killed in US hospitals every month. That’s one every three minutes.
A truth: it’s dangerous to cut people open or put chemicals in them. Deny it and you’ll have plenty of accidents. Dana Farber got to work, and their thinking evolved from the ostrich-like “Everything’s great” to the more accurate “Excellent, not perfect”; from the ostrich-like “Errors are rare” to “Errors are everywhere” and “Great care in a high-risk environment.” A key realization:
Oncology systems are too complex to expect merely extraordinary people to perform perfectly 100% of the time. Leadership has a responsibility to put in place systems and the concomitant resources to support safe practice and to mitigate the chances of error reaching patients and causing harm.
Yes, like it or not, most providers today (doctors, nurses, staff) don’t have good error prevention systems in place – they’re working without a net, and many don’t even realize it. Heaven knows why it’s taking so long to fix this; all I know is that you can be a voice for change, at the point where it matters most to you: the care delivered to your family.
Time has shown you won’t solve this by beating on people – in fact it denies what that quote says. (How often do you improve when you’re beaten?) Dana Farber’s response to errors evolved, leading successfully to improvements:
Look, nobody likes to realize that a patient is killed every three minutes in the US. (And that’s just Medicare.) That makes it hard to work on solutions. But you really, really want providers who are working on it.
Participatory medicine can help. It’s an empowered partnership: we need to act as partners, and we need to expect our providers to treat us as partners. If they’re not treating you that way, ask them to. And if they won’t, think about leaving. You really don’t want medical professionals who are arrogant about excellence and in denial about risk, and you don’t want to be in denial, either. Be a responsible partner.
It’s best if you get that straight before a crisis hits. Have a talk with your providers; look for this approach. They may be surprised – work with them.
*Conway, J., D. Nathan, E. Benz, et al. Key learning from the Dana-Farber Cancer Institute’s ten-year patient safety journey. In Am Soc Clin Oncol 2006 Ed Book. 42nd Annual Meeting, Atlanta, GA, 2006:615-619.