dealing with family history of substance abuse in my health records
January 31, 2012 1:55 PM   Subscribe

I don't want my parent's death due to substance abuse to appear on the family history section of my health records any more. How do I deal with this and what are the repercussions?

One of my parents died of alcoholism. Acute alcohol poisoning is the cause of death listed on the death certificate.

It’s now about 25 years later, I’m 40 y.o., and I do not have a problem with alcohol or substance abuse, though I’ve had opportunities in my life to develop such a habit.

I have had some serious (unrelated) health problems that have required me to see about 40 doctors over the past 10 years. I’ll probably have to continue seeing new doctors, as I’m in a career that requires me to move often.

Often the new patient paperwork asks about the cause of death of parents, and sometimes has a checkbox as to whether there is any family history of alcoholism (just as there are checkboxes for family history of cancer, heart disease, etc.)

In the past I was upfront about my parent’s death. But over time I’ve experienced a number of negative responses from care providers once they note that my parent had an alcohol problem. I’ve received callous, inappropriate, and hurtful comments. I’ve also noted changes in the expression of some doctors and in their attitude toward me (for the worse) once their eyes skim down to that section of the page.

I’ve also gotten the impression, when comparing my treatment to that of others with similar health problems, that health care providers are less likely to provide me with the option of a prescription for pain management. (I have had such prescriptions from time to time in the past, and if anything tend to underuse them.)

Is the only purpose to having this question on the paperwork to make sure the care provider pays attention such that the patient does not develop a similar substance-abuse problem to their parent? Or is there something more to consider? I’ve been through enough in life to know that I don’t have a tendency towards substance abuse, and I’ve had enough negative experiences with doctors regarding this subject now that I’d rather not provide details about my parent's death on my family health history any more.

If I stop sharing this information, what do I write as my parent’s cause of death on these forms? I doubt that most providers will take the time to look through records from previous treatment and discover the discrepancy. But what happens when electronic health care records come along – is my parent’s history of abuse going to follow me around?
posted by anonymous to Health & Fitness (19 answers total) 1 user marked this as a favorite
You can just write "poisoning" and that wouldn't be a discrepancy.
posted by cairdeas at 2:00 PM on January 31, 2012 [1 favorite]

You could also easily say suicide, if that helped.
posted by kate blank at 2:24 PM on January 31, 2012

If you really need to fill that section out (I just wouldn't put anything), then I'd write "heart failure" which I don't think is technically lying, either. I'd avoid putting anything dramatic that could raise questions. If you just want them to skim over that part, then put something common and mundane.

I do think the only reason the question is there is to establish family patterns.
posted by amodelcitizen at 2:29 PM on January 31, 2012 [3 favorites]

Writing "suicide" might elicit a whole new crop of questions you don't particularly want to answer.
posted by custard heart at 2:38 PM on January 31, 2012 [8 favorites]

Heart failure. I know someone who died of alcoholism (but not alcohol poisoning) and the doctors listed the cause of death as heart failure. You can always cry ignorance. You're not a doctor, so I don't see how they could hold your perception of your parent's death against you. The only way I could see it biting you is if they compare your answers over time. That being said, I'm not your lawyer and couldn't possibly understand every method an insurance company would use to nail you.
posted by cnc at 2:42 PM on January 31, 2012

In your shoes, I might put down "accidental death." It feels true, albeit a partial truth. I could imagine some interrogator-doctor someday saying, "You put down accidental death, but 10 years ago you wrote alcohol poisoning!" Seems like the answer to that could be, "Yes, it was an accidental overdose."

Not that interrogator doctors exist. I wouldn't worry too much about changing your answers. I have filled out so many of those medical history forms, and my answers have changed as I learn more about my family history. At some point I got more in touch with my parents after being partially estranged for awhile, and there was a whole slew of new things to write down. One time I forgot my oldest two kids are not genetically related to my partner and filled out one of their medical history forms as if my partner's parents' health problems were part of our kids' family medical history.

It's hard to imagine any circumstance where anyone would care what you wrote on a form in the past; they're interested in your most up-to-date medical history, which is what you're giving them today (and which, I've always assumed, is why a doctor I see regularly has me fill out a new one periodically). And I don't think anybody is interested in catching you out--they want to know what your risk factors are.
posted by not that girl at 2:52 PM on January 31, 2012 [2 favorites]

Cause of death: accidental. If asked any questions about it (unlikely), just reply that it is irrelevant or it is difficult/you don't wish to talk about it.
posted by halogen at 2:52 PM on January 31, 2012 [4 favorites]

Given the amount of time most doctors have to spend with you, you could put down just about anything with little fear they were going to follow up on your answer.
posted by timsteil at 3:03 PM on January 31, 2012 [1 favorite]

Don't write anything, or put "N/A"

If the doc wants to talk, you can frame the conversation.
posted by Lesser Shrew at 3:40 PM on January 31, 2012 [3 favorites]

Isn't "accidental" or "car accident" better than "heart condition"? The reason they're asking at all is for relevant family medical history. It seems "heart failure" would lead to more questions. "Car accident" would mostly end the conversation, I would think.
posted by crankyrogalsky at 3:44 PM on January 31, 2012 [4 favorites]

Don't write anything, or put "N/A"

If the doc wants to talk, you can frame the conversation.

I would go with this. The question is supposed to be there to help the doctor help you, and I totally understand that that hasn't been happening and so you want to stop answering with the truth. However, sending them in a different direction with heart failure or saying car accident isn't necessary. Write nothing or N/A and then when you're talking to the doctor you can tease out if they're someone you can talk about this with or not.
posted by sweetkid at 3:52 PM on January 31, 2012 [4 favorites]

Don't say "heart failure" because if the doctors think your parent died young of heart failure, they'll be concerned that you have a family history of heart disease and treat you accordingly (i.e. be too aggressive about things like cholesterol, etc.). I would leave it blank or write in N/A, as Lesser Shrew suggests. Heck, you could even write in "it's complicated."
posted by mskyle at 4:00 PM on January 31, 2012 [2 favorites]

Leave it blank and just talk about it or write "will discuss in person." I've had to do this for similar matters and no one has ever balked.
posted by griphus at 4:03 PM on January 31, 2012

Posted too soon.

When you talk about it, just tell them accidental death. If you don't want to reveal a family history of it, you don't have to. Plenty of people were raised by alcoholics and either never knew or still refuse to acknowledge it.
posted by griphus at 4:07 PM on January 31, 2012

nthing "accident". You don't want to lead the doctor down a false road like heart or liver disease.
posted by elizeh at 4:49 PM on January 31, 2012

I put N/A to those questions as I'm adopted and don't know my family history. I'm sure you could answer "I don't know" on future forms as there are plenty of people who don't know that information.
posted by smartypantz at 5:52 PM on January 31, 2012 [1 favorite]

Accident works. Or you could just feign ignorance. If you were 15 at the time, it's totally reasonable that you wouldn't know the whole story.
posted by looli at 8:16 PM on January 31, 2012

I just put '?' by the checkbox, since I don't know who my biological father is. It never gets followed up
posted by blue_wardrobe at 9:49 PM on January 31, 2012

Leave it blank. You don't have to tell your doctor anything you don't want to -- but the more you withhold the harder it is to come up with a safe, proper treatment plan taking all that we know about you into account. If you don't want to tell me, for example, that you take HIV meds, then I certainly can't make you, but when there's a choice between an antibiotic that might kill you from interacting with your HIV meds and one that won't, I'll have no way of making the right decision.

Please don't start off your interaction with your physician with a lie. The physician-patient relationship is built on trust. How are we supposed to trust anything you tell us if you can't be honest with us, either?
posted by gramcracker at 11:45 PM on January 31, 2012 [1 favorite]

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