Self-censoring of patient information may be a public health hazard

Medical student Joyce Ho recently wrote an article in which she admitted to discomfort raising the topic of religion with patients.  As a “polarizing” issue that could make the doctor-patient relationship “more unprofessional,” Ms. Ho imagined that patients would fear playing into their doctors’ prejudices, particularly if the doctor were atheist, and that this fear would push some patients away from the inquiring doctor.  Despite her instructor’s recommendation to ask gentle, open-ended questions about faith and spirituality in the context of a patient’s support systems, “personally, I still will not actively ask about religious preferences if the patient does not bring the issue up.”

As a new reader of KevinMD.com, I was first to comment — a mistake, in retrospect.  I imagined her concerns were merely new-doctor jitters, a phenomenon as old as medicine itself.  I pointed out that students at first find religion, sex, and many other topics difficult to broach with patients.  Yet uncomfortable topics such as these are often important, and may go unmentioned unless the doctor asks.  Trying to be supportive, I noted that patients usually worry less about a doctor’s own religious beliefs, or lack thereof, than they do about their doctor’s care and concern.  Frankly, I didn’t imagine my comment was controversial in the least.

To my dismay, comment after comment followed that a patient’s religion is none of his or her doctor’s business.  To some extent this was conflated with complaints of unbidden chaplains appearing at hospital bedsides, and awkward offers by medical staff to pray with a patient who wanted no such thing.  But even leaving aside those obvious blunders, there was rampant mistrust of doctors even inquiring about religion, spirituality, or faith.

Apparently, Ms. Ho was right.  Commenters on the blog assumed we doctors jump to false conclusions — “assume certain things about certain religions” — and are apt to over-interpret based on limited information; that we are “busybodies” to ask about such matters; that the information is irrelevant at best; that “doctors might judge you”; and that we cannot help but oversimplify the beliefs of any patient who has given religion or spirituality serious thought.  A self-identified atheist living in the Bible Belt was grateful no doctor had ever asked: “We in the South have enough problems … without also having doctors who think they should be discussing religion with their patients …”  The comment with the most “agrees” was this anonymous one-liner: “I wouldn’t want my doctor asking about my religion. That’s not necessary. I’m glad mine don’t do that.”

How has it come to this?  Haven’t patient advocates and caring doctors fought for years — decades — to retain humanism in a medical system that inexorably drifts toward the impersonal and mechanical?  What happened to the hope, if not expectation, that one’s doctor sees the person behind the symptoms, the whole patient?  And what on earth happened to the premise that one’s doctor can be trusted with sensitive personal information?  Religion, after all, is hardly the riskiest thing one might tell a physician in confidence.

A close look at the commentary reveals the sad truth.  The healing doctor-patient relationship is no more.  The Bible Belt atheist sees religion as a source of doctor-patient antagonism.  For the rest, the patient’s relationship is not to a doctor, but to a “system of care.”  This system aims to fill blanks in an electronic record; one commenter advised doctors to ask, “Would you like me to list a religious affiliation?” in order that this particular blank can be left unfilled if the patient desires.

Of course, antagonism and “listing” a religion in a database are not why medical students learn to take a patient’s social history, including hobbies, interests, and social supports secular and otherwise.  It’s to know their patients as people, to build rapport, to honor beliefs and relationships their patients hold dear, to appreciate their patients’ strengths as well as weaknesses.  It’s to offer personalized counsel, so that (to take the most basic example) the non-religious are not advised to seek solace in church, nor the faithful to neglect it.

Occasionally it’s to develop a differential diagnosis for a medical condition unexpectedly related to a patient’s social interests or behavior.  And often it’s to learn a patient’s values and preferences regarding end of life care, so that when that patient is unable to express them, his or her trusted doctor already knows.

All of this applies to a doctor, a well-meaning, trustworthy (if fallible) human fiduciary who listens in confidence.  In stark contrast, systems of care suffer diffusion of responsibility.  They spread personal information in unpredictable ways, outside the patient’s control and awareness.  Thus, one commenter wrote, “I don’t want that kind of information in my medical record,” while another elaborated, “Blue Cross and the x-ray technician and everyone else who comes in contact with the chart have no need to know what religion the patient is unless the patient chose to share it with everybody.”

Health reform provides long overdue expansion of health coverage.  On the supply side, it promotes systems of care to enhance efficiency and decrease costs.  It’s important to realize what we may already be losing in the bargain: The traditional personal relationship with a physician entrusted to handle intimate details of one’s life with discretion and wisdom.  If it is no longer safe to divulge one’s religion, what about one’s sexual habits, recreational drug use, risky hobbies, and myriad other touchy subjects?

Widespread self-censoring of this information, to prevent it from entering large medical databases, may turn out to be more hazardous to public health than all the inefficiencies of the old approach.

Steven Reidbord is a psychiatrist who blogs at Reidbord’s Reflections.

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  • Kristy Sokoloski

    What does knowing if a patient has religious belief have to do with diagnosing disease? I do let it be known on my chart with my doctor’s offices what my religious preference is so that they are aware and can respect wishes about the kinds of treatment that are considered acceptable within my religious preference. I think one reason why so many feel like it’s none of the doctor’s business to know their religious preference is because of situations like what happened with the young Amish girl who did not want to continue to do chemotherapy for her particular cancer. And because of that wish and her parents respecting that it has caused a huge legal battle to occur. There are plenty of other cases like this that go on around the country for similar reasons. So now people have gotten afraid of what may transpire if they identify their religious preference.

    • FEDUP MD

      The hospital where I work asks if there are any religious beliefs which would affect decisions about medical care, such as blood tranfusions and Jehovah’s Witnesses. I think this is a good compromise. I also live in the Bible Belt and fear the response from staff if say, my husband listed the truth, which he is an atheist. My Jewish friends have had trouble enough (kids asking my schoolteacher friend “why did you kill Jesus?” ), I can’t even imagine stating you were what many people assume is essentially a Satanist. And I live in a fairly cosmopolitan area with lots of transplants. I can’t imagine if I lived someplace more rural. I would have also wondered what the big deal was when I lived up North but a decade down South has truly changed my mind about disclosing these things.

      • Kristy Sokoloski

        Right, I agree about that the asking about if there are any religious beliefs because of the effect that it could have in relation to decisions about medical care. However, that still doesn’t tell me what it would have to do with the actual diagnosing of a disease.

        You bring up the example of Jehovah’s Witnesses and their decision to not accept blood transfusions. May I ask why it is that a good number of doctors get so upset by the fact that members of Jehovah’s Witnesses choose not to accept a blood transfusion in order to try and save their life when their refusal to accept is based on biblical command to not eat anything that contains blood? They very much value life and wanting to save their lives, but it must be done in such a way that it does not impact their relationship with God for the worst. And because of that respect for life and the command from God to not eat anything that has blood in it they are told that they must be shed of that blood (emptying it out on the ground). Also, taking in that blood means to them that it would invalidate the sacrifice that Jesus gave on behalf of mankind.

        So if they would not eat any food that contains blood in it then why would they have something put in to their body through an IV bag in order to try and save their life when it goes against the command as stated by God in the Bible and adversely affect their relationship with God in order to try and save their lives?

        That blood going through that IV bag is still like a form of eating blood because the body takes it in to try and help it heal or attempt to save a life, just like when eating a meal that can either help a person be healthier or can get sicker.
        And yes, there are Jehovah’s Witnesses who work in the healthcare field but they must be careful about the jobs that they choose within the field. They must be careful so as not to affect their relationship with God by doing something that could violate his commands.

  • EmilyAnon

    What if the patient doesn’t subscribe to an established religion, but still believes in God. How are they listed?

  • Lisa

    When I have completed health histories outside of a hospital setting, I have been asked questions about my sexual history, recreational drug use, alcohol use, smoking and risky hobbies. These topics have a lot more to do with my medical problems than my religious beliefs and I have no problem discussing those things with my doctors as I think there is a legitimate reason for them to have this information.

    I have not been asked the same questions in a hospital setting, other than ones relating to alcohol use and smoking. Again, these questions do pertain to medical problems, so I don’t have a problem with those questions.

  • Patient Kit

    We are hit over the head constantly with the fact that our doctors have very little TIME for us so we need to make that TIME as productive as possible. Lack of TIME is one of the defining features of current doctor-patient “relationships”. We’re urged to come to appointments with prepared prioritized questions and told that we can only deal with one or two issues per appointment. Under most circumstances, our religion will not be one of our top priorities to talk about with our TIME-pressed docs.

    I’d be fine with discussing my spirituality with any doc who wants to take the TIME to really get to know me as a whole person. My spirituality is not cookie cutter so it would take TIME to explain. Maybe from your POV it should only take a minute to explain my spirituality, but from my POV it requires some TIME. If I only get a minute, don’t ask me about my religion. It takes TIME to build meaningful relationships and trust. That isn’t automatic. Can I ask how much TIME, on average, you spend per office visit with your patients? I also don’t recall being asked much about my hobbies, although most of my docs do know that I’m an avid swimmer because one of the first questions I ask when planning surgery is: how soon can I get back in the water and swim?

    • Kristy Sokoloski

      One reason why some doctors ask to take care of one problem at a time is because some of those problems are complicated just by themselves and need to have just the time to treat and deal with that particular problem. And for some of us who have complicated health histories we have more than one very complicated problem to be dealt with. My Primary Care Physician said that we would handle those problems one at a time and it’s a good thing. By handling these big problems one at a time it is very easy for us to focus on just that problem. Other times I have several small problems that have to be dealt with and he has made the time to deal with these issues.

      • eqvet2015

        It’s good until the patient has a multisystem disease whose diagnosis isn’t obvious; at that point, considering “one problem at a time” not only is not efficient, it also risks completely missing the appropriate diagnosis and treatment. It’s a difficult problem, though, in an age where the insurance company rules all.

    • guest

      I completely agree with this. However, the writer is a psychiatrist who has a psychotherapy practice, and so his perspective is colored by the fact that he has time, a lot of it, with his patients. In his context, knowing about the patient’s religious and spiritual beliefs makes perfect sense. The tricky part is that his relatively luxurious practice setting makes it difficult for him to appreciate how little time other doctors get to spend with their patients these days, and therefore it is difficult for him to make accurate assessments of what it is appropriate for a doctor to be discussing with a patient during a routine medical encounter.

      By contrast, when one thinks about, for example, an oncologist who is trying to create a complex treatment plan for a cancer patient during a time-limited encounter, it is a little silly for anyone to have an expectation that that oncologist would ever be able to get into something as personal as religion with his or her patients.

  • http://blog.stevenreidbordmd.com/ Steven Reidbord MD

    I debated not commenting on my own article, as I see many others don’t, and I think I already stated my position pretty well. But I welcome dialog, so here goes.

    @kristysokoloski:disqus: Occasionally religious practices (not beliefs) enter into a disease differential. Dietary restrictions leading to malnourishment, wearing a burka leading to vitamin D deficiency, etc. To the extent that one places trust in a physician to diagnose and treat, it is shortsighted to self-censor based on what one “thinks” might be relevant. Why should your doctor know you like to garden? Well, because your odd symptoms could be organophosphate poisoning, i.e., something you didn’t anticipate because you are not a doctor. No one is an expert in everything, but physicians are experts in health — if we have the data.

    More often, knowing who or what is important in a patient’s life helps not with diagnosis but with management and support, broadly construed. I can’t say it better than in my 7th and 8th paragraphs above.

    @EmilyAnon:disqus: It’s not about “listing”. I would be perfectly happy if religion were not “listed” in medical records at all.

    @patientkit:disqus: Learning about social history is done at an initial visit, ideally by a primary care doctor when the patient is well, and not when time is short. If time is always short, then this is a systemic problem, which is why I referenced “systems of care” and health reform. Doctors, especially in primary care, need enough time to get to know their patients. That way they won’t miss insecticide poisoning in the gardener or chlorine dermatitis in the swimmer, and can relate to their patients as people.

    Although I’m a psychotherapist, we’re not talking psychotherapy here. I’m mainly addressing primary care medicine. Remember, even we doctors are patients too, and so are our families and friends.

    @guest: Ad-hominem comments are unbecoming. I’ve worn many hats in my career, and my words would stand even if written by a non-physician. Oncologists should be *very* interested in social and emotional support for their patients, and I personally know several who get to know their patients this way. I’m well aware that docs are squeezed from all sides these days, and that the real and ideal of medical practice drift further and further apart. I only ask that we not lose sight of the trade-offs, nor forget what good medical care looks like.

    • Patient Kit

      First, I’m glad you decided to jump back in and comment. There are many important and thought-provoking pieces posted on KevinMD but, IMHO, the very best part of KMD is the great discussions in the comments that happen routinely between doctors and patients here.

      In an ideal world, I’d love for my doctors to all know me very well and as a whole person. But in the real world that I live in, I came very close to not being able to access any medical care at all when I was diagnosed with ovarian cancer after I lost my insurance post-layoff. I’m very grateful that, once I qualified for Medicaid, I was able to get excellent care at one of NYC’s teaching hospitals. Although, I must admit that I feel like my specialist care has been excellent while primary care has been adequate. I’m very attached to my specialists. My primary care doc, not so much. To be honest, now that I’m getting back on my feet, I’ll choose my next insurance based on what my GYN ONC accepts. I don’t have any intention of staying with my current primary care doc. From what I read on KMD, I’m not all that hopeful of finding a primary care doc who will have time to really get to know me. It sounds like the time crunch is only worsening.

      I have a lot of respect for what you do, Dr Reidbord. My sister is a psychotherapist at HHC (the public hospital system here in NYC). She’s an MSW, not a doc. But I know very well what important work you do. It would be great if our primary care docs got to know us as well as therapists do.

  • guest

    “…surely, practicing psychotherapists are not completely unaware of the extreme time constraints most doctors — and their patients — are under in most other fields of medicine?”
    It’s not unusual for someone in a privileged position to be surprisingly oblivious to the challenges faced by someone who is less privileged. Also, doctors are socialized to look for opportunities to be critical of one another; I think it’s a competitiveness thing, or maybe identification with the aggressor left over from our training.
    In any case, no, it does not surprise me very much that someone who is paid cash to see his patients for 45 minutes once a week is either unaware of the fact or unable to take into consideration that most other doctors don’t even have enough time to take an adequate medical history from a patient, so spending time exploring the patient’s religious beliefs would be an inappropriate use of the patient’s time with them., as you pointed out.
    It’s really great that you have such a good relationship with your GYN by the way.

  • http://www.ronsmithmd.com/ Ron Smith

    Hi, Steven.

    I think that the older I am (now 55 and I can see both the hillside from which I came and the hillside to where I’m going), the easier it is to converse with patients about all topics relevant to them as human.

    For any physician to say that any topic is off-limits to discuss with patients, is probably more of reflection of that physicians own ill-at-ease feelings about the topic.

    Religion is no different than other personal medical issues. I rarely discuss the very difficult times that Stacy and I had with Laura who passed away at age 24 from the consequences of fetal isotretinoin embyopathy. But when I do, it is meant to help the patient.

    Just because I’m Christian does not mean that my exam room is a prime location to target people for sharing my faith. Neither though is it a place where I leave my humanity outside the exam room door.

    Most of the time patients need just my medical advice. Sometimes they are going through medical difficulties for which my own experience becomes as much a medicine as any prescription that I could write.

    I respect my parent’s right to choose their lifestyle and their faith without regard to any variation in the loving care that I provide to their children. I have even been asked by several gay couples who adopted or had in vitro fertilization if there lifestyle would be a problem with the care that I would provide. Of course it is not. I am not a PC policeman nor do I want anyone taking away my freedom to choose Christ.

    There is no better way to share the character of the man that I’ve become because of my faith, than to honor those choices in the people that I dearly care about.

    Barring frank issues of child abuse, my patients are safe with me. The skill however to be open and non-threatening is not easy, and for some physicians impossible, to learn. These days it seems quite likely for an atheist to be militantly ardent about their non-belief, but there should be no reason that they cannot respect their patients who do believe, if they are committed to the practice of medicine over their personal areligious position.

    Caring well for patients is well…caring for them gracefully.

    Warmest regards,

    Ron Smith, MD
    www (adot) ronsmithmd (adot) com

    • http://blog.stevenreidbordmd.com/ Steven Reidbord MD

      Whether one’s character as a doctor was formed by religious faith, non-religious humanism, or the professional ethics of medicine itself ought to be irrelevant in the day to day care of patients. There are fine and ethical physicians who are atheist, Muslim, Christian, and everything else. “Militant” anything in a doctor is unprofessional. I agree it’s the patient’s views that matter, and we doctors best reveal our own ethical standards by respecting that. Thanks for writing, Ron.

  • SarahJ89

    I share nothing “extra” beyond immediate symptoms with my doctor since the advent of EMRs. I live in a rural area so telling me my neighbours who work in the medical system have to log in to read my records is scant comfort.

    • http://blog.stevenreidbordmd.com/ Steven Reidbord MD

      That was exactly the point of my post. Thanks.

  • SarahJ89

    I’ve had psychotherapists share psychiatric records with “NOT TO BE SHOWN TO PATIENT” stamped (in red, no less) all over them. The psychotherapists in question knew me well enough to know I needed and could hear what was in those records, although the persons who wrote them obviously did not. Considering the ramifications of inaccuracies following us for a lifetime in the era of EMRs, it is outrageous to withhold any written observations from a patient.

  • Martha55

    If religion is important and it’s not in the chart, the patient centered medical home team won’t be able to use for diagnostic purposes.

    Wouldn’t it be more direct to ask about diet than to ask about religion and infer dietary restrictions. Or ask about exposure to the sun to decide whether vitamin D is an issue.

    With 73% of Americans identify as Christian, what real information do you get by me telling you I am Christian? Does that tell you I attend church and have a strong community or does it mean my parents took me to church when I was a kid and haven’t stepped into a church since I was 10 years old? If I tell you I am Catholic are you not going to offer me birth control? If I am Mormon, are you going to assume I don’t drink?

  • buzzkillerjsmith

    My religion is college football, and the WSU Cougars are my gods, although they haven’t been very powerful ones for the last few years or maybe a century or so.

    Anyway… If a U of W Husky comes into my office and starts spouting about his (untrue) religion, he’s out on his ear, buster.

    And I DO talk about the Cougs in the office.