Informed Refusal: The Doctor Told Me To Come Back When I Had Health Insurance

You're probably familiar with this unlikely and oft-quoted scenario. Patient with disease sees doctor, who peforms a wallet biopsy. After determining the hapless sap is unlikely to pay for the needed medical diagnostic procedure or treatment, the doctor says 'come back when you have health insurance.'

At least that's what the media says.

The Disease Management Care Blog thinks the reality is far more complex:

Doctor: 'How can I help you?'

Patient: 'I saw blood in my [insert name of body fluid] .'

Doctor: 'You're going to need additional testing.'

Patient: I don't have health insurance, so how much is it going to cost me?'

Doctor: 'Well a [insert name of organ]oscopy will cost [insert number] [insert hundreds or thousands] of dollars.

Patient: 'I can't afford that.'

Doctor: 'You can't afford not to have that. Get it done and worry about paying for it later. I'm sure something can be arranged.'

Patient: 'It isn't going to happen. No way can I pay for it, I'm already up to my ears in debt.'

Doctor: 'The test can't be done for free. I strongly advise you to get it done'

Patient: 'No can do.'

Doctor: 'Well, why don't you come back when you have health insurance.'

Years later, when the patient's cancer has progressed to its terminal stages, he is asked how the early symptoms were ignored. The patient's response:

'The doctor told me to come back when I had health insurance.'

The Disease Management Care Blog has seen many patients without health insurance and never dismissed them after a negative 'wallet biopsy'. The typical physician doesn't either. Instead, after confronting the sticker shock of today's real health care costs, it's the patients who often chose to forgo their physician's recommendations based on financial considerations. Weeks, months or years later, what patients remember is how their lack of health insurance put affordability out of reach.

It's been known for a long time that patient recall of the details of past physician encounters is often at variance with what is written in the medical record. When it comes to smoking cessation counseling, this study indicates patient recall tends to be high. On the other hand, recall about the details of the advantages and disadvantages of spinal surgery can be surprisingly low. To complicate things further, recall may be influenced by ethnicity. Of course, not only is patient recall inaccurate, but physician documentation of what happens during the course of a clinic visit often leaves much to be desired. Fixing this shortcoming (for example, with the use of decision supported 'smart forms') is among the many supposed advantages of the electronic record.

The DMCB searched the published literature to see if there were any studies that compared patient recall of the details of what physicians really say about their patient's lack of insurance, what they write in the medical record and what their patients actually remember. There are none. Given the media's less-than-perfect track record on reporting health care in general, the problem may be way overblown.

Some potential solutions:

For the young academics casting about for a research project: use the same 'patient recall' methdology used on prior studies to scientifically compare what really happens to what patients remember in 'no health insurance' discussions. This is very publishable.

For news media: understand that what patients tell you about past conversations with physicians can be inaccurate, if not superficial. Ditto what physicians write in the chart. You are doing a disservice if you give into your biased assumptions and don't dig deeper.

For physicians: if a patient has no health insurance refuses a recommendation on the basis of out of pocket costs for lack of health insurance, approach it like your would informed refusal and take the effort - as always - to document everything. Since physicians typically say much more than 'come back when you have insurance,' the misinterpretation of that phrase makes the DMCB think it should be abandoned and never used in a medical record (unless thats what you really said, you heel).

For electronic health record vendors and CIOs: Develop a 'smart form' that can be used by physicians when they are treating a patient who refuses a recommendation due to financial reasons. For example, 'After discussion of the risks, benefits and alternatives to [insert name of test, diagnostic procedure or treatment here] including the possibility of disease progression and death, the patient, due to financial considerations and the lack of insurance coverage, decided to forego my recommendations. The patient was informed about the need to seek alternative financing alternatives and indicated understanding about that need. The patient was strongly encouraged to return in the near or distant future if there is any change in the decision to forgo my recommendation because of financial considerations.'

For readers: Next time your read about an anecdote about greedy physicians telling patients to come back when they have insurance, be skeptical. There is probably far more to the story.