Author Archives: e-Patient Dave
Powerful new “Doctor becomes an e-patient” story in Journal of Participatory Medicine
The original post by e-Patient Dave appears on http://e-patients.net/archives/2011/04/doctor-as-e-patient-jopm.html
Two years ago we wrote “Let’s hear it for the ‘d-patients’” — doctors who become e-patients themselves. We said “D-patients prove that patient empowerment is anything but anti-doctor. Heck, sometimes it’s a doctor preservationmovement.”
A new article in our Journal of Participatory Medicine provides a compelling example: A Physician’s Experience as a Cancer of the Neck Patient: The Importance of Patient Participation. The author, Itzhak Brook MD, makes our point:
I am telling my personal story in the hope that health care providers will realize the difficult challenges faced by a patient diagnosed with cancer and undergoing extensive surgeries. I am also discussing the importance of active participation of the patient and their family members in all phases of care.
JoPM co-editor Charlie Smith adds, in his introductory note: (emphasis added)
You may wonder why a physician’s account of his illness and the frustrations he experienced merit publication in this journal. But, if a doctor has this degree of anxiety, this much difficulty getting information about his care and this degree of struggle making good decisions, then patients can easily understand why they feel so overwhelmed and incapable, at times, of truly “participating” in their own care. What we are advocating for is difficult in the best of circumstances and requires all hands on deck for the task!
I – and many other patients – know exactly what Dr. Brook means when he says:
…both of these approaches [physicians who acted "half full" and "half empty"] deprived me of being truthfully and fully informed about my prognosis, which is essential for making logical choices concerning treatment. I preferred those who told me the truth about risks and my prognosis, even if it was not rosy. I always voiced my preference to the physicians so that they would be aware of my wishes and so we could, hopefully, develop a trusting relationship.
When his radiation oncologists failed for five days to get the machine fixed or send him somewhere else, he asserted himself and did get sent elsewhere. He writes, “This lack of initiative left me feeling that they were indifferent to my plight.” That too will sound familiar to some.
Then, when he reported side effects and needed to be cared for:
“I needed the doctors to be there for me but, instead, they left me feeling like I was pestering them with trivial issues and complaints. Everything was so new to me. I was concerned and worried about my symptoms and looked to them for advice on how to cope. I also needed reassurance that these were expected symptoms and that they would go away afterwards. Fortunately, I found receptive ears and helpful advice from the clinic nurse.”
In my speeches I often start by saying, “Patient is not a third person word. Your time will come.” What a great example this narrative is.
There’s much more in the full article. Please, patients and providers alike, read the whole thing and think about when your time will come
The discovery of practice variation: follow the data
This post by e-Patient Dave appeared on e-patients.net on March 11, 2011.
It is a capital mistake to theorize before one has data. Insensibly one begins to twist facts to suit theories, instead of theories to suit facts.
Sherlock Holmes, in Scandal in Bohemia
I’ve been reading Jack Wennberg’s new book Tracking Medicine, which is about his lifetime of work in understanding the reality of how medicine is practiced, as a route to helping us achieve the best care possible for each of us. My first post about this was three months ago, en route to a seminar on SDM (shared decision making); my first post after the seminar was shortly after. The whole subject has bent my thinking about healthcare so severely that it’s taken me this long to decide what to say next.
Key findings:
- Your doctors, with the best of intentions and the best of training, may unwittingly be prescribing treatments that are unnecessary for you, or not prescribing things that are. (“You” includes anyone you’re caring for.)
- This realization was developed not through people’s opinions but by looking at cold hard numbers. After controlling for all variables, the odds of a given patient getting a given treatment vary by hundreds of percent from region to region.
- For whatever reason, decades of efforts to change this have been fruitless, so the risks from unnecessary treatments continue and inappropriate care continues.
- Part of the reason is that we’re in denial (patients and providers alike), and part of the reason for that seems to be that the causes are unconscious. (See below.)
- This doesn’t mean your doctors are incompetent – the forces at play seem to be universal. The problem is that virtually nobody realizes it’s happening – neither we as consumer/patients nor the physicians.
- E-patient takeaway: If you want the best care for yourself and your family, do what you can to understand these issues and have empowered, engaged, participatory conversations with your providers.
Wennberg’s method was to crawl through databases. From the start of his book:
Early in my career, I was hired as director of a federally sponsored program whose goal was to ensure that all Vermonters had access to recent advances in the treatment of heart disease, cancer, and stroke.… As the results came in, however, rather than evidence for underuse… we found extensive and seemingly inexplicable variation in the way health care was delivered from one Vermont community to another.
This “practice variation” is described in my previous post. Today’s post presents a top-level introduction to what has taken thirty years of analysis and testing to confirm. It’s hard to imagine this is true; read the book. In short, Wennberg and his colleagues have established that healthcare decisions in reality can be categorized in three groups:
- Effective care: situations where there’s no debate – all eligible patients should get this. Example: if you have a broken hip, you should have a hip replacement.
- This is about 15% of Medicare spending.
- As a separate cause for concern (not cited in this book), other studies have found that doctors only recommend “the standard of care” about half the time. (Isn’t that amazing and eye-opening?)
- Note: this is only 15%. 85% of the time, the decision is open to consideration, and you should be presented with options.
- Elective or “preference-sensitive” care: there’s more than one option, and outcomes vary depending on which option you choose.
- This is about 25% of Medicare spending.
- Includes decisions about some surgery, and some screening tests.
- These decisions are preference sensitive – they have different quality of life (QOL) implications, so the “right”decision for proper care cannot be made without knowing the patient’s preference. You should be asked.
- Example: if you have an enlarged prostate, one option is to just keep an eye on it (“watchful waiting” or “active surveillance”). The surgical option has significant risk of side effects: impotence, leakage, other issues. Years of research has shown that the importance of each side effect varies widely by patient. The correct decision can’t be made by the doctor alone.
- But many (perhaps most?) clinicians don’t present us with the range of options – they make the choice for us (perhaps with the best of intentions) and then ask our consent. (This is the “informed consent” form we’re asked to sign.)
- Most patients don’t know about this, so they don’t ask and they don’t get involved with decisions. But when the options and trade-offs are presented, people often opt not to have surgery. That’s informed choice, vs informed consent.
- Here’s something to think about: some people at the Foundation for Informed Medical Decision Making (FIMDM) proposes that operating on a patient without knowing their preference risks as much of a medical error as operating on the wrong limb!
- Supply-sensitive care: 60% of Medicare spending (sixty percent!)
- As described in the previous post, in a majority of cases your likelihood of having a treatment recommended is proportional to how available it is in your area - not related to your need. Even the chance that your death will occur in an ICU is proportional to the supply of ICU beds in your area.
- Yes, there is vast historical evidence for this. (See Sherlock Holmes above.
“Supply-sensitive care” smacks of Parkinson’s Law (“Work expands so as to fill the time available for its completion,”), or, according to Wikipedia, a generalization: “The demand upon a resource tends to expand to match the supply of the resource.” Indeed, a similar law, Roemer’s Law, is widely accepted by people I’ve talked to: “A bed built is a bed filled.” (No matter how much hospital capacity you build, it’ll get used up.)
And the doctors who recommend that we be hospitalized to the gills generally don’t realize they’re doing it.
Think this is a complaint about American healthcare? It’s not. For instance, in 1992 it was noted in the Netherlands: http://www.ncbi.nlm.nih.gov/pubmed/1600289
e-Patient take-aways – Things for engaged / activated patients to realize:
I can’t overstate the importance of realizing this as we approach any decision about a treatment, especially surgery. It’s especially important to realize that your own physician, with the best of intentions, may not be aware of the invisible influences driving the treatment recommendations of his or her peers in the local community.
It seems clear to me that we must, must, must create discussion tools – an index card, a flyer, a website – from a respected source to help clinicians listen when we ask, “is this treatment necessary?” And ask for help inresearching the rationale for the decision, including researching the relative frequency of recommending it in other hospital referral regions.
We need to educate clinicians, patient advocates, insurance companies and health plans, and each other about this issue. What’s at stake is patient safety: every hospitalization and treatment carries a risk of harm as well as the possibility of improvement. I’ve heard from many people that their physicians are sometimes offended when patients ask. (Of course, many other physicians aren’t.) We need to stand up for our rights to be responsible for what happens to our bodies.
