Ethics rounds

Case:
A 35 year old woman comes to see you for a sore throat.   It began about a week ago with fever, chills, and a tickle in the throat.  The throat became rapidly worse, making swallowing painful.  She feels that her “glands” are swollen.  She mentions that her spouse thought there was also a rash. She has a headache.

Her past medical history is negligible, having had no history of diseases other than childhood ear infections and strep throat. She has had two normal vaginal deliveries and four pregnancies that were not brought to term.  She smokes one pack per day of cigarettes and an occasional marijuana cigarette.  She does not drink alcohol.

She does not have a cough, shortness of breath, chest pain, or any other symptoms than those listed.

On physical exam, her temperature is 38.5 degrees Celcius (about 101 degrees Fahrenheit). She is in no significant distress. Her voice is muffled.  She has enlarged tonsils with some white patches.  She has tender, swollen lymph nodes in her neck. She has a fine, bumpy rash on her trunk.

You do a rapid strep test in your office and it is negative (sensitivity about 80-90%).  You consider doing additional testing.

Among the relatively common conditions you are considering are: plain old upper respiratory infection, strep throat, mononucleosis, other bacterial infections of the throat, thrush, gonorrhea, herpes, and HIV.

Since beginning to see you the patient has signed a yearly “General Consent to Treatment”, which states, in part:

By signing below, I, (or my authorized representative on my behalf) authorize ____________________ and their staff to conduct any diagnostic examinations, tests and procedures and to provide any medications, treatment or therapy necessary to effectively assess and maintain my health, and to assess, diagnose and treat my illness or injuries. I understand that it is the responsibility of my individual treating healthcare providers to explain to me the reasons for any particular diagnostic examination, test or procedure, the available treatment options and the common risks and anticipated burdens and benefits associated with these options as well as alternative courses of treatment.

Right to Refuse Treatment: In giving my general consent to treatment, I understand that I retain the right to refuse any particular examination, test, procedure, treatment, therapy or
medication recommended or deemed medically necessary by my individual treating health care providers. I also understand that the practice of medicine is not an exact science and that no guarantees have been made to me as to the results of my evaluation and/or treatment.

What are you obligated to tell the patient before performing the tests for the diseases you are considering?

Discussion:

Respecting a patient’s autonomy (one of our current ethical imperatives) means providing informed consent, that is, telling the patient anything they reasonably need to know to make decisions about their care.  If this is taken ad absurdum, we would be asking permission to specifically examine each toe (which we do not).  Some procedures though require more specific informed consent.  Any surgery requires the surgeon to tell the patient what they can expect, good and bad, from the procedure.  A breast or genital exam requires specific consent (ethically). What about blood tests?

Some blood tests are more “ethically loaded” than others.  A prostate specific antigen (PSA) test requires a discussion rather than a check mark on a lab sheet.  When we order a PSA, we set off a series of potential events (biopsies, radiation, chemotherapy).  We don’t know precisely what a screening PSA test tells us, so we have to talk about it first.  Some patients choose to get one, some do not.

Other more common blood tests do not typically come with a specific discussion of consent.  We often order blood counts or electrolytes as part of the course of diagnosing and treating patients.  It’s not that these cannot reveal serious diseases—they can.  Why don’t we normally get specific consent?

Some of the tests we are contemplating doing for our patient are the more ethically loaded type, specifically HIV.  In the early days of the pandemic, a positive HIV test could mean the loss of your home, job, or life.  Since then, the social stigma and danger has decreased a bit, but it’s still “different”.  A diagnosis completely changes one’s life, medical, social, and in other ways.  Most physicians and physician groups see HIV testing as somehow different, even though we wish it weren’t.  Because of the consequences of testing, we generally will discuss the test in some detail before ordering it. This discussion will usually include your pre-test probability of HIV given in lay-terms, and the consequences of negative and positive results.

Even though HIV is now recommended as part of standard yearly health screening, we treat it differently.

Should we?

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7 Comments

  1. inbabyattachmode

     /  May 7, 2012

    Difficult question… on the one hand I do think HIV is different, since it is still an incurable disease. Being diagnosed with HIV not only means you will have to take medication at very specific times for the rest of your life, but it unfortunately also still means you will be stigmatized. On the other hand: I once had blood drawn to test for several STDs (so also HIV) and called my GP to find out the results. The doctor’s assistant told me that the results were such that she couldn’t discuss them over the phone and I could come in the next day. She didn’t tell me that this was common procedure when someone was tested for HIV (and I didn’t ask), so for a full day I completely freaked out that I might be HIV positive. I was incredibly relieved the next day to find out that I wasn’t and wondered whether this way of telling was really necessary.

  2. I think we treat HIV differently for the same reasons we treat genital and breast exams differently: all of these investigations come with connotations and consequences of sexuality. USians are monstrously frightened of and private about their sexual health, so we need some handholding for it. I don’t think it has much to do with curability (do you have a long discussion about HgbA1C testing? or RA/ANA?) or treatability.

    • To be fair, if testing for HIV is a violation, so is testing for blood type, phenylketonuria, and later in life, glucose and cholesterol. (Unlike genital and breast exams, which actually do involve exposing breasts and genitalia.)

      HIV certainly has more immediate results than high cholesterol, and it’s far deadlier.

  3. It’s interesting to think about how acclimating us to both talking about it and to routine testing might improve our collective public health outcomes. Normalizing the discussion, education, and testing (and results disclosure protocols so no one freaks out) will be a net positive in my opinion. My parents and grandparents didn’t talk about HIV (or anything having to do with human sexuality) except to stigmatize those who are HIV+. I think I recall you and others writing not too long ago about how that generation now has the highest incidence of new infection.

    • Much AIDS money goes to fighting the stigma. Back in the 80s, this was called “degaying”. Degaying had the odd effect that they felt not only that they needed to defend gay men, but also defend all the moral panics and stereotypes about gay life (e.g., bathhouses). This is why the message has gone from “abstain, be faithful, use condoms” to “circumcise, circumcise, circumcise” in sub-Saharan Africa within my lifetime.

      I’m too young to be cynical, but AIDS money is all about politics these days. In the developed world, at least one Toronto agency was arranging bathhouse tours for gay twentysomethings a few years back.

  4. Barbarella

     /  May 8, 2012

    I understand why this is under the general label ‘ethics,’ but as a patient, I always hope that my physician will trust in my ability to make a choice. While, myself, I would prefer to know any illness I might have, so I can be informed about the course of treatment, I have found many health professionals who use their own judgment. To say their judgment was poor would be a gross understatement. Twice I have had doctors declare in a hallway with other members of their staff present that I had a venereal disease (neither time did it prove to be the case after testing, even though I told them I often had allergic skin responses to spermicidal creams). I have had doctors call me a slut, a prude, and the number of them who use my mental health diagnosis of bipolar disorder to tell me since I’m crazy, so they don’t trust me to follow directions or report physical problems accurately, range from hospital staff to individuals in every specialty.

    Is this ethical behavior in a professional? And when will supposedly professional medical people stop assuming that if you have a mental illness, you are just temporarily on leave from an asylum? Would it make a difference to them if they knew how often their antiquated attitude keeps depressed, anxious, or compulsive people from getting any kind of medical treatment at all?

    • Ethics exist to guide us but do not guarantee that people will behave ethically. That’s why stories like yours are important–highlighting good and bad behavior helps us learn and improve.

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