Physician mistrust and the end of the doctor-patient relationship

trust meKevinMD.com published a post a couple of days ago from medical student Joyce Ho 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, 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, Joyce 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 xray 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.

16 comments to Physician mistrust and the end of the doctor-patient relationship

  • I think the emotionally charged topics that you mention can almost always be discussed. The discussion needs to be focused on the meaning of the inquiry and the subject rather than just a notation in the chart. Depending on the problem, it may not take long to get to. As examples, situations occur where the religion of the psychiatrist or whether they believe in a certain deity can occur within the opening minutes of an interview. In some settings like addiction and 12 step recovery there are often spontaneous discussions of spirituality, higher power, and how to reconcile those topics with being an atheist or an agnostic. To that extent it depends a lot on expectations, depth and meaning of the discussion.

    Some may have the concern that a physician might try to give them spiritual advice and I think there always need to be clear boundaries between spiritual care professionals and medical staff. I think that an explicit discussion of why the information may be important is useful.

    • I agree with everything you wrote. Bear in mind that the discussion on KevinMD had nothing to do with psychiatry. It was about a med student who is reluctant to ask medical patients about religious or spiritual beliefs, a position that to my surprise was widely applauded. In psychiatry it is even more obvious that we need to inquire about this, as your examples illustrate.

  • AnonNurse

    Actually, the way you describe talking to patients about religion is not generally how it’s approached. In the hospital, it’s thrown in with dozes of other questions the nurse must ask the patient upon admission to the hospital. It’s not to build rapport, or to get to know the patient. It’s to fill a box. This then shows up on the first page of the medical record for anyone to see when they pick up the chart, 52 y/o black male, Methodist. I’m not sure what that adds for everyone who picks up the chart. Great, he’s Methodist! Does he go once at Christmas, is religion important to him?, is he a lapsed Methodist? Who knows, but we do know he’s Methodist! So, maybe if it were being approached like you said it might be different, but it’s sadly just one more box to fill in during a hospital admission. When I saw the discomfort and sometimes flat out irritation at the question, I started telling patients before I began with all the questions that I had a lot of questions to ask and they could feel free to decline to answer any they didn’t wish to answer. After that, many started to decline to answer the question about religion. This tells me that people in the past were likely answering because they didn’t want to rock the boat and not because they wanted me to know.

    • Thank you for writing. You’re absolutely right. When the question is a fill-in-the-blank on an admission form, it invites most of the criticisms levied by the commenters I quoted. It’s an oversimplified label that invites stereotyping, unrequested chaplain visits, and widespread promulgation through the electronic health record. It denies the patient’s uniqueness instead of highlighting it. It’s a cheap data point. Its only possible use, presumably why it’s there at all, is to summon the appropriate clergy to the bedside when the patient is dying. In this age of advance directives, it has outlived its usefulness.

      As you know, both physicians and nurses are trained to interview new patients comprehensively, to get to know them as people. There is great value in this. When either type of professional is reduced to collecting dry data to “fill a box” it is dehumanizing to both the asker and the answerer. Little wonder that surveyed doctors are increasingly dissatisfied with this type of practice; I assume this holds for nurses as well. A “professional” is someone with specialized knowledge who is able and authorized to perform complex tasks. For both ourselves and our patients, doctors and nurses need to push back against social and economic forces that would reduce us to mindless functionaries. Your small rebellion — letting patients know they don’t have to answer every question asked of them — helps to hold that line.

  • Psych Survivor

    I see two main reasons why the patient/doctor relationship will continue to deteriorate in the years to come,

    -The power relationship doctor/patient is unbalanced (something that is particularly true with psychiatrists). A doctor can screw the life of a patient legally without engaging in malpractice while that is not the case the other way around (a doctor can only be sued by a patient if the doctor engages in malpractice). With the US increasingly moving towards a socialized medicine model, this is particularly a problem. Now Obama wants to use doctors to gather information about people’s gun ownership. Faced with this reality, doctors -not only psychiatrists- need to be approached with respect to personal information on a “need to know basis”. In the age of information sharing and state databases that register all kinds of information about you, this mistrust of doctors has to be taken to a completely new level. I don’t see how one’s religion or one’s sex habits has anything to do with “cholesterol levels” or “glucose levels”.

    – People are appalled at what the NSA has done hacking onto internet providers. Now, that’s pure child play in comparison with what the NSA, or other malicious adversary, could do to you if they were to hack Epic’s Care Everywhere network or similar networks that hospitals and providers use to share patients’ information. So our only defense is that these hospitals and their doctors know as little about you as possible.

    • The power relationship between doctors and patients has always been unbalanced. Always was, always will be. It’s built into the nature of the relationship: one person is sick and scared, the other isn’t and can usually help the one who is. Living in a complex society requires trust: that supermarkets won’t poison your food, that engineers won’t make bridges that collapse when you cross, that police officers won’t shoot you on a whim. All of these are “unbalanced power relationships” that we either learn to live with, or avoid with great effort and great limitations. On the other hand, I agree with you that we are trading away personal privacy at an alarming rate. This often starts innocuously — not many people argue against doctors having to report child or elder abuse, even though this trades away patient confidentiality. But if we citizens don’t draw the line somewhere, there will be no confidentiality at all, and as you say, all sensible patients will self-censor based on what they think their doctor needs to know.

      The trouble is, it’s risky to assume that religion or sex habits are unrelated to “cholesterol or glucose levels”. A religion that mandates an unusual diet may affect both of these. Sex habits may increase risk for AIDS, hepatitis, and a host of other diseases. If patients all knew ahead of time what a doctor “needs to know,” they could be doctors themselves. For any sort of reliable health care, we doctors will need to determine what we need to know. The only rational solution I see is political pressure to limit where such information goes after a doctor collects it. Thank you for writing.

      • Psych Survivor

        I hadn’t seen this response earlier so that’s why I am replying now. While we agree on the diagnosis of the loss privacy in general, I respectfully disagree with your solutions.

        A doctor, in my opinion, has to be approached with the same caution as you would approach a computer technician. For a computer technician, knowing your web browsing habits is irrelevant (even though there might be certain patterns of network traffic that might stress your computer more than others and therefore a “holistic” approach might make your computer break less often). When a computer is broken, your technician needs to know the minimum information possible. You forget that we are all human and we all have our price. By “price” I do not necessarily mean money, but “intellectual price”. Paternalistic doctors might use the information they know about you in all kinds of ways that they think are good but that the patient victim thinks are nefarious. Take your two examples, sex habits and religion. We do have empirical evidence that if doctors were to collude to force their patients into HAART, HIV prevalence would be lower (read http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2688320/ ). Yet, because we value our individual freedom more than the “collective outcomes”, we don’t have said policies for now in the US. Same thing with sincerely held religious beliefs. I see psychiatry as a sort of secular belief system. It doesn’t reach the level of religion because it doesn’t appeal to the supranatural however it appeals to the notion that a group of self appointed mind guardians at the APA can define behavioral orthodoxy for the rest of society via voting the patterns of behavior they consider “pathological”. When there is overlap between religion and this belief system (such as between Christianity and the pre 1974 APA when it came to homosexuality) good things might come out of it. When there isn’t (as it is increasingly the case now with the APA even officially supporting gay marriage) things could get out of control pretty quickly. People who believe that gay marriage will bring the end of Western civilization could be labelled psychotic and all sorts of other things.

        In fact, given my condition of survivor of psychiatric abuse, my personal advise to the few friends who know what happened to me when they inquiry about whether they should see a psychiatrist is that they stay as away from them as possible. The potential for having their life screwed from having seen a psychiatrist is just too big to ignore (http://www.antipsychiatry.org/stigma.htm , the 2002 update reflects very well my current day to day; as somebody told me recently, I live my life as if I was a wanted criminal).

        So thanks, but no thanks. Keep your doctors as in the dark as you can about your personal life.

  • Ann

    I have been doing therapy with a psychiatrist for over two years. I was experiencing a lot of family pressure as to how to practice my faith. Fortunately, my doctor was willing to discuss this issue and actually helped me recognize the freedom that comes from allowing myself to explore different expressions of my faith. This has helped me tremendously in my healing as I learn to trust my own experiences. Exploring the spiritual side of one’s life can lead to great progress and shouldn’t be neglected. If a doctor merely inquires about the role of spiritually in his patient’s life, this may open the door to a huge resource in healing. The patient can decide whether or not to pursue the topic. As long as the doctor doesn’t have a hidden agenda, I see no problem with inquiring. As an adult woman, I have the ability to decide what to share with my doctor. I hate that the doctor-patient relationship has suffered so much in the last several decades. Thank you for your site! Ann

  • Arby (Not a Doctor)

    Psych Survivor,

    Well, you certainly have raised the bar. I was only going to comment that I barely have time to share my symptoms with my provider (after we review my medications and I catch him up on what’s new in my chart that he didn’t have time to read), much less on what religion I practice. And, that I think physicians bailed out on trusting their patients first. However, you bring up a very valid point about keeping as much out of your personal life out of your chart as possible.

    Dr. Reidbord,

    I am curious to know why you thought it was a mistake to post your comment first. On the contrary, you started a very good discussion. Besides, if you are going to “get your hands dirty”, it is about as civil a site as any to do it. For a stark contrast, visit one of the skeptics science blogs for a bit; you’ll see what dissent and derision really is.

    Btw, I am new to your blog, yet I have seen some of your work. I’ve been using HealthTap for about a year and a half now and although you haven’t commented on any of my questions, your answers display in the streaming feed. I’ve been particularly impressed with how relevant and concise they are, especially given the text limitations for both questions and answers.

    • Hi Arby,

      It was a mistake to comment first because I made a false assumption, that Ms. Ho’s reluctance to ask about religion was due to her lack of experience. In reality, she had a better “sense of the crowd” than I initially did. If I had waited, I would have seen that and commented differently. The civility on KevinMD is superb. I’ve commented in much more antagonistic online forums, although I far prefer the civil ones.

      Thanks for your kind words about my HealthTap participation. I joined early in their history, and have a couple posts about them.

    • Psych Survivor

      For anybody who thinks that I am exaggerating I ask them to submit a HIPAA request to get a full copy of their medical record, including psychotherapy notes if they had received psychiatric services. You’ll be surprised, especially if you have received psychiatric services, about how much info about you is stored in some computer system somewhere. Then I ask you to consider the following,

      1- Unlike what happens with banks where each bank is very diligent keeping the data about their customers secret from access to bankers at other institutions, there exist several so called Health Information Exchanges (HIEs) – of which EPIC’s Care Everywhere is the largest- that hospitals across the country use to “facilitate” the sharing of medical records among themselves. In addition, it is precisely the best hospitals that are accelerating the HIE adoption. So if you went for your care to a good center, chances are high that your information can be accessed through one or several HIEs and thus available to many hospitals across the country (technically protected by the fact that doctors need to log into their respective HIE systems with a user and a password but the opening for hacking an causal unauthorized access is there). Note that this is very different from the information collected by and made available by credit reporting agencies. Say you had several accounts at bank A -including checking and savings- and then go to bank B to ask for a loan. When, as part of a new loan application, you authorize bank B to run a credit check, the credit report only contains your open credit accounts, the amount of credit you were given by bank A and how well you pay your credit accounts. Said credit reports do not contain the information about all your accounts (checking, brokerage, etc) nor the individual transactions that you’ve done on said accounts. If banks had the same degree of sharing that these HIEs make possible, a clerk in bank B would able to access all your accounts on bank A and the transactions on said accounts. Really scary.

      2- There is an obscure federal law passed in 2009 called the HITECH Act that, among other things, requires medicare/medicaid providers to move to electronic medical records (EMR) or pay a fine by 2015. The HITECH Act also includes a provision that requires the same providers to report HIPAA breaches involving 500 or more patients. The database containing those breaches is here: http://www.hhs.gov/ocr/privacy/hipaa/administrative/breachnotificationrule/breachtool.html .

      What I learned from point 2- is that unlike what happens with banks, HIPAA breaches are a very common phenomenon. And the breaches listed above are the breaches that affect 500 or more patients. It might be impossible to find one provider that has not been responsible for breaches that affect at least one patient.

      So these exchanges make it possible for hospitals to share among themselves extremely sensitive information and, at least at present, are extremely insecure (compared to other industries that have been sharing data electronically for decades).

      • Yep, this is all true. HIPAA (the Health Insurance Portability and Accountability Act of 1996) was largely designed to ease the sharing of information among medical centers, insurers, and other large health institutions. That’s the “portability” in the name, and they mainly had electronic data in mind. For what it’s worth, I’m not a HIPAA provider — it’s possible by avoiding electronic billing, e-prescribing, and such. I find the Medicare documentation requirements concerning, but for now I remain a Medicare provider.

  • LuLu

    You know, I have mixed feeling on this.

    For instance, I used to observe full hijab (religious style of dress involving head covering, long sleeves, legs covered). But then I started getting some bad brain fog, jittery, just overall not feeling well. I went to the doctor and found out I had a vitamin D deficiency. I went online to see if this was common in women who observe hijab. It was a lot more common than I thought. Canada put out a PSA featuring a bunch of athletic looking Muslim women running around in hijab and advised that Vitamin D supplementation is particularly important for Muslim women wearing hijab because of our decreased exposure to sunlight.

    You can only imagine what it’s like in Saudi Arabia! The countries where the women are totally covered except for the eyes have major Vitamin D deficiency issues in the women. Poor Afghanistan, where they had the burka for so long. It covers over even the eyes, and I heard it was actually damaging the eyes of the women.

    On the other hand, I can tell you right now that my hijab really threw some doctors and some of the staff. There was one doc I had where I noticed that if I wore a head scarf that looked trendy and non-religious, he and his med. assistant were friendlier and more open. But if it was unmistakably Islamic, they would get really uncomfortable and they felt cold. At one point the doc actually told me that when you live in a country you have to dress like the people. He said it like he was trying to give friendly advice, because I had mentioned having some social problems. But I could tell he found my hijab distracting. He asked if maybe I could switch over to wearing hats.

    Religion is touchy. There could be some instances where it is actually helpful (Vitamin D is more likely to occur in women wearing hijab). But then there are others where it just makes everything so much more awkward.

    I stopped wearing hijab. Didn’t wanna take the Vit. D supplements.

  • Psych Survivor

    I put it in a different place because although it is related to the idea of how people should be careful with psychiatrists, it doesn’t fit any of the above conversations.

    [balance of comment deleted]

    [I’m sorry, but this post isn’t even about psychiatry. Unlike prior anti-psychiatrists who submitted comments I didn’t publish, you (“Psych Survivor”) offer cogent arguments and provide useful links. Your three comments above will stand. However, with this fourth I’m left with the feeling that a guest has entered my home-on-the-web for the sole purpose of disparaging what I do for a living. I don’t think anyone would like this, or put up with it for very long, including yourself. You made your points, I responded above the best I could, and you already had the last word yesterday. Thank you for your contributions, but that’s enough. — SR]

  • FYI,
    This article was cross-posted today to KevinMD under the title “Self-censoring of patient information may be a public health hazard.” Kevin Pho chooses the titles for his blog; his gloss is more specific than mine, but misses the root cause in the shift from a doctor-patient relationship to a system-patient relationship.

  • Arby (Not a Doctor)

    I agree. I saw his post this morning and I at first thought you had written a new article expanding on the concern of patient information and how it is exchanged. I know from a comment of Dr. Wible’s that the titles are changed when cross-posted, but I am glad you addressed it here and shared your thoughts on the impact of the change.

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