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Patient Participation in Decision-Making

“Patient-Centered” decision-making is a new buzz-word in medicine. It is a metaphor for a general approach to care that puts the patient’s experience and needs at the center, as opposed to the needs of the physician or the system.

While this is an effective marketing term, and a useful principle as far as it goes, as a guide to medical practice it is a bit simplistic. It needs to be viewed in the context of the overall medical infrastructure and the net effect specific practices have on the cost and effectiveness of medical care.

A 2012 NEJM editorial by Charles Bardes nicely summarizes the issues. He notes that patient-centered care represents the next step in a general trend (a good trend) in the medical profession over the last half-century:

The British psychoanalyst Enid Balint appears to have coined the term in 1969. She described a form of mini-psychotherapy that general practitioners could provide for persons who had illnesses that were partially or wholly psychosomatic. Her concept contrasted with “illness-oriented care” and meshed well with other critiques of modern medicine’s emphasis on pathophysiology to the exclusion of other means of knowing and treating the patient. Landmarks in this paradigm shift have included Engel’s proposal for a biopsychosocial model that would “take into account the patient, the social context in which he lives, and the complementary system devised by society to deal with the disruptive effects of illness”; Cassell’s transcriptions of clinical encounters, which provided an empirical basis for understanding the doctor–patient relationship; and Kleinman’s definitions of “disease” and “illness” as contrasting the doctor’s understanding of disordered biomechanics with the patient’s subjective experience of feeling sick.

He concludes, and I agree, that the patient and the physician are both the central actors in the doctor-patient interaction, but that there are interested third parties, like insurance companies, that also affect decision-making.

The optimal balance between the doctor, the patient, and third parties has been a longstanding debate within medicine. Thoughtful engagement on this issue, it seems, has resulted in real progress. The old paternalistic model, in which the patient simply did as they were told without meaningful consultation, has largely been replaced with a more cooperative model and one that properly grants to the patient informed consent.

Unfortunately, complexity intrudes on this comfortable relationship. We have to recognize that we are somewhat at cross-purposes. Optimal medical practice would maximize several outcomes simultaneously — the patient experience, doctor and patient autonomy, medical outcomes, and cost effectiveness, to name the most important. The problem is, you can’t always get all of these things to an optimal degree at the same time.

Medical outcomes, for example, are optimized when quality control measures are put into place, but these measures often reduce patient and doctor autonomy. Cost constraints also may come at the expense of patient experience and doctor-patient autonomy (we hope not medical outcome, but realistically, this also).

Whenever we push or pull on this entangled system, we have to consider the net effects on all the other aspects.
A recent study, for example, looked at the effects of patient participation in decision-making. This was a survey of 22,000 patients admitted to a hospital system, asking them about their desire to be informed about decision-making, and also to participate in medical decision-making. Nearly all of those surveyed responded that they wanted to be informed, but more than 70% also wanted to leave the medical decision-making to their doctors. The rest wanted to participate in the medical decision-making. The researchers then linked the survey results to length of stay and cost of care outcomes and found that:

“Preference to participate in medical decision making increased with educational level and with private health insurance,” the authors note. “…patients who preferred to participate in decision making concerning their care had a 0.26-day longer length of stay and $865 higher total hospitalization costs.”

A recent review of research into health outcomes with patient participation was inconclusive — the existing studies are scant and of poor quality. So this question remains an unknown.

There appears to be a lot of support for shared decision-making as an idea, and most of the published studies focus on how to improve shared decision-making. We need more research, however, on what the actual effects of this shift in practice will have.

I find it interesting that over the same course of time, the last few decades, there has been a shift away from physician experience as the ultimate arbiter of decision-making, to evidence-based medicine, practice standards, and quality control. The evidence is pretty clear that evidence-based guidelines produce better outcomes than physicians relying on their own experience and judgment.

The rising costs of health care make all of these issues much more acute. Can we afford a philosophical shift to greater patient involvement in decision-making when it is associated with higher costs and we don’t really know the net effect on medical outcomes but there is good reason to suspect that it may be negative (when compared to evidence-based standards)? It seems to me we should more thoroughly explore these outcomes before we institute major infrastructural changes.

Meanwhile, what is the best synthesis of the evidence that we do have? The good news is that what most patients want, and how most physicians practice today, are also non-controversial in terms of cost and medical outcome. Patients want to be well-informed, and informed consent is the current standard of care. There does not appear to be any downside to informed consent.

Where it gets tricky is the proper balance of actual decision-making between the doctor, the patient, the insurance company, and other mechanisms of quality control (such as official practice guidelines). The evidence supports heavy reliance on rigorous evidence-based guidelines as much as possible. The health care system and patients would benefit from exploring ways to enhance compliance with such guidelines.

Insurance companies, in my opinion, are a double-edged sword. They can actually reduce health care costs by avoiding unnecessary tests and treatments (when they follow evidence-based guidelines) but can also hamper the practice of medicine with short-sighted rules and requirements and onerous procedural hurdles.

Patient participation in decision-making remains a complex question. Clearly there is no one model for all patients — patients have different desires in this regard, and varying healthcare literacy. Keep in mind, an adult competent patient is 100% in control of their own health care decision-making. The ultimate decision is always theirs. What we are talking about is how the patient and physician should interact.

For example, should a physician present a recommendation to their patient, or a list of options, or both — this is what I recommend, but here are some other options and their strengths and weaknesses. This hybrid approach is what I do and what I find most of my colleagues do, individualized to the patient. There is an art to this that cannot be captured in any algorithm.

One huge advantage to patient participation in the decision-making process is that they are more likely to be compliant with the treatment plan. The best recommendation is wasted if the patient does not follow it. Patients are often reluctant to contradict their physician if a strong recommendation is made without consultation, but then they will not follow the recommendation and will seek a second opinion (at extra cost to the system).

To the extent that patients ask for or the physician offers options, it is necessary to give accurate information about risks and benefits. Patients often need counseling if fear, anxiety, or hidden misconceptions are causing them to make decisions that depart significantly from what the evidence suggests is the best course. This, of course, all depends on what the patient’s goals are, and this is always a good place to begin (rather than assuming what their goals are).

All of this complexity is probably why existing evidence is inconclusive — it is very difficult to capture all of this nuance in a clinical trial. But still, we must try. The stakes are simply too high to make major changes to the practice of medicine based upon feel-good philosophy without the backing of rigorous evidence.

Posted in: Science and Medicine

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25 thoughts on “Patient Participation in Decision-Making

  1. Reminds me of “fast, cheap, and good: pick any two.”

    Patient-centered, cost-effective, evidence-based? We probably can’t have ‘em all at once.

  2. Coot says:

    Steve, you should read the New Yorker Cheesecake Hospital article:

    http://www.newyorker.com/reporting/2012/08/13/120813fa_fact_gawande

    It worries me because hospitals like restaurants with huge menus sounds awesome. But an over-focus upon subjective value tends to undermine everyone’s effort to remain objective and evidence based.

    So long as medical decision-making remains a function of a living human being embedded in a complex situation, we’re going to need a shared culture of objectivity and self-skepticism to maintain the cognitive discipline necessary to do the job of doctoring. That means sometimes saying, “sorry there is no pill for that,” and other upsetting things.

    The management of medical practice invites non-physicians to attempt to measure the unmeasurable, as one cannot manage what cannot be measured. Right now I’m able to push back a little against this monster that wants my staff to cough up meaningless information at the expense of actually useful data collection efforts. But once consumer satisfaction becomes enshrined as everyone’s chief value, I’m pretty sure I’m doomed.

  3. tgobbi says:

    Dr. Novella: “The old paternalistic model, in which the patient simply did as they were told without meaningful consultation, has largely been replaced with a more cooperative model and one that properly grants to the patient informed consent.”

    This is a topic I’ve been thinking about more and more lately. As I grow older and more medical problems arise, I’ve been seeing a bigger array of doctors. I’m old enough to remember the days of the paternalistic model and sometimes I’m overwhelmed by the new system. Doctors know more about illness and treatment than I do and more and more options become available with frightening speed. When I’m confronted with myriad choices I find myself asking my physicians for their advice on which to opt for. (Sometimes it’s a slam/dunk and I don’t need counsel – as in choosing between radioactive seeding and surgical removal when I was diagnosed with prostate cancer some years ago). By and large, though, I wind up asking the doctor, “What would you do in my position.” This has to be predicated on a great deal of trust in the physician, of course; one has a greater rapport with some than with others.

    Occasionally a conflict arises. For example my PCP may have a different view from that of one of the specialists I see. For the most part, depending on my relationship with the specialist in question, I tend to take the latter’s advice. My previous, long-time primary tended to be a bit of an alarmist with a proclivity to overreact – often to the chagrin of, for example, my cardiologist.

    There’s another factor that crops up: for those of us who are married and/or have children, we have 3rd (and 4th) parties involved in the decision making process.

    Basically I guess I’m saying that struggling with options isn’t easy for the patient and his family, especially for a layman like me with no scientific or medical background but who has developed a healthy skepticism and is always on his guard against questionable advice.

  4. tgobbi – I agree. That is part of the personalizing of approach. Some patients just want you to tell them what to do. Others want to be given as much information as possible, about as many options as possible, to make their own decisions. Most are somewhere in between.

    It’s a delicate balance.

  5. windriven says:

    “Optimal medical practice would maximize several outcomes simultaneous(ly) — the patient experience, doctor and patient autonomy, medical outcomes, and cost effectiveness, to name the most important.”

    “The evidence is pretty clear that evidence-based guidelines produce better outcomes than physicians relying on their own experience and judgment.”

    It seems to me that much woo and nonsense finds root in the notions of physician and patient autonomy. Third party payers will always be a part of the medical equation in this country. It is worth considerable effort to ensure that third party payers adhere to the very best EBM practices in their payment protocols.

    That said, patients who want to walk on the wild side and indulge in macrobiotic rice cleanses and shamanistic prayings and hand-wavings should have every right to do so. On their own dimes.

    Would you want to share in paying for a fire department that fought house fires by burning incense and singing Kumbaya? No? Then why should society (or a subset of society paying into a given third party insurer) carry the burden of paying for sham medical treatments that are the practical equivalent?

  6. KillCurve says:

    Dr. Novella, this is not directly related to the topic of this post, but you mentioned “The evidence is pretty clear that evidence-based guidelines produce better outcomes than physicians relying on their own experience and judgment.” I was wondering how extensively this has been studied.

  7. ABS says:

    There is nothing new in patient-centered care. It started with Balint in the fifties (not Enid Balint, but her husband, Michael, Hungarian-born psychiatrist who set up the Tavistock Clinic in London and lead the first major studies on doctor-patient relationship), then came Engel’s biopsychosocial approach, next the study by Byrne and Long in the seventies, followed by Joseph Levenstein and the Western Ontario work (Moira Stewart, Judith Belle-Brown, Ian McWhinney et al) in the eighties and nineties.

    The model is still evolving but is very clear: reaching common ground is a major dimension, of course, but that doesn’t mean that the physician must endure any nonsense brought on him/her by the patient. It is the usual problem of a good idea, well researched and tested, being put to the wrong use by those trying to justify their own agenda, like the use of “holistic” by the Woo Brothers (poor Goldstein, never had a chance).

  8. Coot says:

    The evidence is pretty clear that evidence-based guidelines produce better outcomes than physicians relying on their own experience and judgment.

    Experience still counts, sometimes a lot. But maybe less so when the doctor ignores the evidence based guidelines.

    Higher levels of therapist prior clinical experience and lower levels of prior anxiety-specific experience were significant predictors of better treatment outcome. Findings suggest that although all therapists used the same manual-guided treatment, therapist style, experience, and clinical skills were related to differences in child outcome.

    http://psycnet.apa.org/journals/pro/44/2/89/

  9. Harriet Hall says:

    I wrote about this issue here:
    http://www.sciencebasedmedicine.org/index.php/beyond-informed-consent-shared-decision-making/
    Some patients really prefer not to hear all the confusing details of the different options. One-sided decision-making by doctors is not paternalism if the patient is given the autonomy to decide that he wants the doctor to decide for him.

  10. windriven says:

    @Dr. Hall

    “Some patients really prefer not to hear all the confusing details of the different options.”

    How does that square with informed consent? And when the mud hits the fan and the patient screams that they didn’t understand the ramifications of the treatment plan and the other options available, what exactly do you tell your insurer’s attorney?

  11. Trebla says:

    1970- the first week of medical school. A family practitioner spoke & offered this insight: about 80% of the people you see will be more troubled than ill. You’re job is to figure out every day which is which.
    I am not sure those ratios hold for orthopedic surgery but this concept has been very true in my experience. Something besides objective data is a major decider for a substantial portion of patients, and they end up making an objectively wrong call.
    Finding the right balance between being a willing enabler vs a paternalistic law giver is not simple.

  12. goodnightirene says:

    There are all kinds of doctors, patients, and interactions between them. Some of the old so-called paternalistic docs of my childhood and early adulthood were wonderful, in the way Robert Young was wonderful as the father that knew best (even when he was being very paternalistic), and some of the new “patient centered” ones come off as automatons reading you your rights.

    Now that my medical center is converting to electronic health records (which I thought I welcomed), all the docs just sit at the terminal and type, type, type, during the entire visit–no eye contact after the “hello”. I’m trying to adjust, and once asked her to just take notes and do it later. She complied but never did it again, so I try not to fuss.

    At the end of the day, whatever makes patients happy enough to not run to the nearest quack to get some “patient centered” treatment is okay with me. All I require at this point is someone who DOESN’T start going on about some stupid fad diet book that he has actually read and is following.

  13. pmoran says:

    @Dr. Hall

    “Some patients really prefer not to hear all the confusing details of the different options.”

    How does that square with informed consent? And when the mud hits the fan and the patient screams that they didn’t understand the ramifications of the treatment plan and the other options available, what exactly do you tell your insurer’s attorney?

    Yes, this is where informed consent can acquire a downside, i.e. when it becomes a defence against litigation, rather than an attempt to satisfy the expectations of reasonable individuals. The consent process before surgery can become very scary for the patient while offering dubious legal protection.

  14. Harriet Hall says:

    @windriven,

    You could document in the medical record that the patient gave informed consent to not hearing the details and letting the doctor decide. You could rely on the autonomy principle as a defense for letting the patient make that choice. You could develop a good relationship of trust with the patient so he won’t sue. It’s unfortunate that the medico-legal status quo favors lawsuit avoidance over compassion and providing patient-centered care.

  15. Harriet Hall says:

    @goodnightirene,

    Yes, I’ve had those encounters where the doctor is fixated on the computer and barely glances at me. But I had the most delightful experience this morning. I saw a specialist at an Army medical center for a consultation. He had familiarized himself with my case before he walked in the door, and he had a printout of the important details. He went over those details with me to review and verify all the ins and outs of my medical history, so I felt confident that he really understood. He maintained eye contact, explained his thinking in detail, and involved me in the decision-making process, even asking me how I would feel about waiting to do a CT scan until after a therapeutic trial so there was a chance I wouldn’t need the test, although it might mean I had to put up with the symptoms a little longer (I chose to wait). He did a thorough exam. He answered all my questions. He didn’t even turn the computer on until he had to to input a prescription for me. There are good doctors out there, even in the often-maligned military system. Despite the Burzynski’s and the Oz’s, there is reason for optimism about the future of medicine.

  16. nareg says:

    2 colleagues of mine and i have been working on a patient-centered model for dentistry. (qualitative paper, data collected/analysed, we’re in the process of writing it now)

    like steven mentioned, it’s a complex process, however the philosophy behind it is simple: recognize the patient’s whole-person dimension (and the need to get to know them better), and respect their input as being useful.

    if they demand a paternalistic approach, it is still compatible with a “patient-centered” model to be paternalistic, as long as it wasn’t assumed but asked/explored. (re: harriet’s piece)

    it also needs to be recognized “medicine” is not one big homogenous entity. some aspects of medicine (eg. chronic illness management) might gain from such an approach much more than others (eg. emergency room).

    patient variation, practitioner variation, field variation, context variation. it _is_ complex.

    another point that needs to be added (i don’t have the reference handy right now) is that patient adherence to treatments that require patient cooperation is increased with practitioners who have a more “shared-decision-making” approach.

  17. goodnightirene says:

    @HH

    Wow! Nice office visit. Do you think your experience a one-off or a trend? I get all my healthcare at a medical school/hospital complex and they all seem to be following a mandate to type what the patient says verbatim–even the physical therapist. I hope she’s getting all the jokes in there as I seem to crack her up every week.

  18. medicalrevolt says:

    Good summary. All too often I think patients think them being in complete control despite their lack of formal training and understanding is best. And too many doctors arrogantly think that with their formal training and understanding know what is best for every patient. As you clearly put the balance lies somewhere in between.

    And I agree, as much as I hate to admit it, there is a good role for insurance companies as a third party to come in and keep the number of tests and drugs in check.

  19. Underground Anthropologist says:

    The doctor/patient power dynamic is endlessly fascinating. This is totally anecdotal but if you listen to the ways in which laypeople justify their decisions to seek out alternative medical practitioners, very often there’s at least one story about a doctor who was (or whom they perceived to be) condescending to them. They were personally insulted by this and sought alternative care almost, it seems to me, as an oppositional reaction to the experience. As a way to flip the power dynamic, IMO. The doctor HH described above sounds fantastic, and more like that might keep more of the very sensitive types of people in standard medical care.

    I have a related question about the DSM, but I need to think it through before I ask.

  20. theLaplaceDemon says:

    @UndergroundAnthropologist – Again totally anecdotal, but I have observed the same thing. “My doctor was mean and unhelpful, so I went to a naturopath” sorts of things.

    In the most recent example, the person told me that the naturopath told them their symptoms were caused by inflammation, and then gave them a supplement to “boost” their immune system (?!?!?!?!).

  21. Chris says:

    theLaplaceDemon:

    then gave them a supplement to “boost” their immune system (?!?!?!?!)

    I have been told to boost my immune system, to which I reply that it would only cause it to kill me faster. My immune system has been known to block my breathing when it has encountered mold from a swamp cooler.

    (love your ‘nym, almost as much as I love Laplace transforms)

  22. Underground Anthropologist says:

    @ theLaplaceDemon: Yeah, exactly that kind of thinking. @ Chris: great response to people who just parrot that immune boosting nonsense.

    So DSM questions. (Sorry for the length. I might pitch this as a discussion topic for a podcast I participate in and pull and attribute quotes from the responses, if that’s okay.)

    I listened to a SciFri discussion that included Gary Greenberg, a practicing psychotherapist and author who is broadly critical of the DSM model. If I understand correctly, he claims that the mental disorders described in the DSM are somewhat mythical constructs rather than typical physical disease labels for which we have solid information about the biochemistry and mechanics of the disease. For a given cluster of symtoms that the DSM labels X, there might be many diverse pathways to arrive at that cluster of symptoms, and therefore calling all clusters of these same symptoms “X” might be mislabeling, limits treatment options, and limits research into “same cluster of symptoms, but not the same cause as X.” Is that a valid criticism?

    The mythical constructs idea makes me wonder how closely the evolving DSM reflects the evolving norms of the society. Like de-pathologizing homosexuality, for example. If the leading edge of mental disorder lies at the “non-functional-in-your-society” mark on the behavioral spectrum, and if this mark changes over time with cultural evolution, how do clinicians internalize the new norms and integrate these into the diagnoses? Are some mental illnesses entirely biologically-based? Do we label these as neurological disorders rather than psychological disorders? Are any mental illnesses entirely cultural?

    Thanks.

  23. Chris says:

    Underground Anthropologist, that was a very interesting discussion. It can be best summed up as “It is complicated, and more research is needed. The research needs to go more into why and not just how to relieve symptoms.”

    (Disclaimer: I have a kid who would have been diagnosed with autism with DSM IV, but not DSM III or DSM V, and we had a relative who was diagnosed as bipolar in one state’s county psyche system, and with schizophrenia in another state).

  24. mousethatroared says:

    theLaplaceDemon “In the most recent example, the person told me that the naturopath told them their symptoms were caused by inflammation, and then gave them a supplement to “boost” their immune system (?!?!?!?!).”

    LOL – like giving water to a drowning man.

  25. Underground Anthropologist says:

    @ Chris: the inconsistent diagnoses anecdote is really interesting. It completely confirms my bias about the cultural influences, both within psychiatry and in the larger culture.

    @ everyone: I just saw the SBM article about the DSM from 5/22 which basically answers all of my questions. Not sure how I missed it before. Sorry to wander slightly OT here.

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