How much guidance do patients want with their medical decisions?

How much guidance do patients want with their medical decisions?The following column was published on November 10, 2011  in Medical Economics.

I recently saw two patients in my primary care clinic, each with new-onset hypertension.

The first, a middle-aged executive, brought printouts from the Internet and already had researched the various treatment options for high blood pressure. During the visit, we discussed this information, and I gave my thoughts on what to do next. He considered and appreciated my input but made it clear that the ultimate decision was his.

The second was an elderly gentleman in his 70s. Again, I discussed the various management approaches and then gave my opinion on what we should do. In contrast to the other patient, he said, “I want to do whatever you suggest. After all, you’re the doctor.”

As a publisher of a social media health Web site, I’ve observed closely the growth of the patient empowerment movement, facilitated by the Web making health information more accessible. According to the Pew Internet and American Life Project, 80% of Internet users go online to research their health, and this effort gives patients a greater voice in their care. Paternalistic decision making that traditionally drove the doctor-patient relationship slowly is being replaced by shared decisions. But not all patients embrace their new decision-making role.

In a recent study from the Journal of Medical Ethics, researchers interviewed more than 8,000 patients. Almost all wanted doctors to offer choices and help consider their options, but two-thirds preferred that the final medical decision to be left to the physician.

According to Farr A. Curlin, MD, an associate professor of medicine at the University of Chicago and one of the authors of the study, “the data [say] decisively that most patients don’t want to make these decisions on their own.”

There is a spectrum of how much physician involvement patients want. Some may want physicians only to suggest and inform but leave the ultimate decision to them. Others prefer doctors to have the final say.

The only way to know a patient’s preference is through a continuous relationship where that comfort level can be developed over time. After several encounters, a clinician should have a sense of how much, or how little, direction a patient needs.

Sadly, two factors in healthcare today work against such a sustained doctor-patient relationship. One is the fragmentation of medical care. More patients are seeing not only a primary care physician (PCP) in a clinic, but also a hospitalist when admitted to a hospital, along with an array of specialists both in the hospital and the clinic. According to a New England Journal of Medicine study, Medicare beneficiaries saw an average of two primary care physicians and five specialists working in four different practices. Without knowing the patient well, each provider may differ with his or her input in the medical decision process, which can frustrate patients who may have their own ideas of how much their doctors should be involved.

Next, consider the decay of primary care itself. There is a profound shortage of PCPs, with the American College of Physicians noting that “primary care, the backbone of the nation’s healthcare system, is at grave risk of collapse.” Patients who cannot schedule timely primary care appointments go to the emergency department, where they encounter clinicians they’ve never met before. The shortage is compounded by what is shown in the results of an Annals of Internal Medicine survey, which revealed that 30% of PCPs were likely to leave the field, citing burnout from time pressures, a chaotic work pace, and little control over their work. Both the shortage and attrition of primary care providers worsen the odds of forming long-term relationships with patients.

Having known my two patients with hypertension for years, I anticipated how much physician involvement they would need to make a treatment decision and was able to tailor my approach to meet their individual expectations. During this turbulent period of healthcare reform, we cannot lose sight of the importance of a continuous relationship between doctors and patients. Otherwise, our fragmented health system and deterioration of primary care will make it challenging to provide the proper amount of guidance for patient medical decisions.

 is an internal medicine physician and on the Board of Contributors at USA Today.  He is founder and editor of KevinMD.com, also on FacebookTwitterGoogle+, and LinkedIn.

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  • http://www.facebook.com/people/Steven-Reznick/100000549195050 Steven Reznick

    Longitudinal care , knowing your patient are always important in advising. Some of it is a generational issue as well with Baby Boomers, Generation Xers and younger patients wishing to be treated differently. The key is listening to the patient ( having the time to listen), educating , advising and giving the patient the tools to make an informed decision. I try to keep in mind what would I be advising if I was sitting in the patient chair or if it was my parents, my wife or one of my children. That usually gives the patient the best options. 

    Great article Kevin !

    • http://onhealthtech.blogspot.com Margalit Gur-Arie

      Dr. Reznick, your type of practice is an outlier. Unless it catches on in one form or another (and I hope it does), most people will have to make their own decisions regarding medical care, whether they like it or not.
      The combined forces of patient empowerment movements and policy that confuses continuity of care (i.e. longitudinal care), with care coordination (provided by “teams” and computers) will place the patient pretty much alone in that hospital bed.

      I think the folks at the University of Chicago should repeat their study with several definitions of “doctor” in their questionnaire. They may get answers that better align with current policy.

  • http://www.facebook.com/people/Terence-Ivfmd-Lee/1523282856 Terence Ivfmd Lee

    My observations in my specialty mirror yours, Kevin. I would add that it’s more like 95% of infertility patients who consult the internet. Because of the very fact you cite that some patients want more control and some want to be told what to do, I’ve evolved into saying “We can do options A, B and C. The pros and cons of each are as follows……My recommendation is B, but I think either A or B are reasonable and C would be a less desirable choice because of xxxx. Which are you learning towards?” Also, I will remember to be thankful for the longitudinal care nature in my specialty. It really makes the practice of medicine more enjoyable.

  • http://www.facebook.com/drjoe.kosterich DrJoe Kosterich

    This issue applies in other countries with different systems too. Couple it with slavish adherence to protocols and the art of medicine will disappear. Then it will be sorely missed and appreciated

  • Anonymous

    I tend to offer a range of choices. Works great for the empowered patients in Eugene, Oregon who want less-invasive, more-natural treatments and tend to avoid pharmaceuticals. When I gave my standard list of options to an elderly woman with a UTI. She replied, “What’s a matter Honey. Don’t ya know what you’re doin’ ?”  

  • Geert Alders

    I think Lucien Engelen from the Radboud University Nijmegen (The Netherlands) was
    right! He stated that patients are coming from “being ridden in a car as
    the passenger on the backseat” and are more going towards “riding as a
    co-pilot next to the driver”. The patient is directing/suggesting the driver which
    way to go, but the driver still controls the car. I think this metaphor is
    picturing very truthfully the way of thinking of the present (and future) generations.

  • Anonymous

    You don’t have to know the patient to adjust to their preferred decision making role, you just have to ask them. Every time. And if they say, “you decide, Doc” ask them what would help them to share in decision making with you. Tell them you need their help. Sometimes they just need permission to participate and collaborate rather than delegate, a little confidence that what matters to them matters to you. I acknowledge the profound importance of a long term relationship between physician and patient, but this relationship may lull you into a false sense of thinking you know what your patient wants or values. You may be surprised how often you are wrong. Again, just ask. Every time.

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