Is patient-centered care an outmoded concept?

Hospitals commonly espouse a commitment to patient-centered care (PCC). Most fail to achieve it. Causative factors are legion. PCC is often considered a strategy or a tactic, for example, when it really should be integral to an organization’s culture, and enabled by a supportive vision. Some organizations appreciate this, yet still struggle. This is understandable. Today’s health care providers were not trained to provide PCC. They lack the requisite skills, and patient empowerment unsettles them. I am not sure any of this matters, however. Traditional PCC, on life-support in many institutions, may be an outmoded concept, and not worthy of resuscitation.

The term PCC does not accurately describe what modern patients seek.  Patients do not want to be at “the center” of a health care construct; they want to be recognized as full partners in their care, and are speaking about this with an increasingly unified and powerful voice. Indeed, while economics, demographics and technologic advances will continue to prompt system change, “the patient voice” is poised to become its dominant driver.

Today’s sophisticated health care consumer employs the Internet not only to acquire information, but also to speak, using blogs and other social media outlets. One Internet site tracks over 200 dialysis patient blogs, and the light these writings cast upon the treatment of chronic disease in our health care system is shocking. Such voices will not be stilled.

The voice of formal patient advocacy has now gone digital, as evidenced by the popularity of ePatient Dave and dozens of other Internet-based patient associations and advocacy sites. These are spawning patient movements with catchy mantras, such as: “Nothing about me, without me”, and “Respect me. Hear me. Work with me.” Emboldened, more and more patients are becoming health literates, speaking with stronger voices, and becoming better partners in their care. Confronted with disease, they turn to the Internet for information, and arrive at their physicians’ offices with both voice and vocabulary, seeking dialogue.

The voices of patients now echo everywhere. They talk about hospitals being dangerous places, best avoided, and how this can be accomplished. They demand transparency regarding the performance of their hospitals and providers, and speak with their feet when such information is unavailable or suggestive of poor performance.

Technology-based conveniences have changed every aspect of modern patients’ lives, who vocalize their amazement at doctors’ offices or hospitals that are not navigable, do not allow one-stop shopping or the ability to book appointments online, do not permit online access to medical records, and do not provide prompt digital copies of laboratory and diagnostic imaging results.

Patients speak with their families and peers about wanting to age and die at home, and observe that the system doesn’t let them, and that this must change. They share what they have learned about health care systems in other countries.  Such communal learning further fuels expectations, which are later verbalized.

The patient voice is being heard. At one Canadian Hospital, trained Patient Advisors sit on all important hospital committees, including search and select committees. No policy decisions with patient consequences are made without patient input. The patient voice is the first one heard at hospital meetings. Hospitals are increasingly providing patients access to their medical records, and the ability to make contributions to them.  Convenient “virtual wards” and other vHealth initiatives are being studied at academic centers. Patients arriving at some dialysis centers are asked: “What would you like to accomplish today?” Stanford University has developed a range of educational offerings related to patient self-management.

At present, few North American health care organizations can boast of an organizational culture that genuinely embraces the patient as a partner.   This is about to change. The voice of the patient is becoming ever more powerful and will lead the health care system to a better place.

Robert Bear is a physician, consultant and author of the medical novel Sorrow’s Reward.

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  • http://twitter.com/redesign Peter Jones

    The active and activist patient movement is a trend, absolutely. But patient-centered care hasn’t been given much time to take hold. Its less than a decade, which is brief in a healthcare system that took 100 years to evolve. It takes time to educate new clinicians and propagate through the systems.

    So is patient activism enough to significantly change the way care services are provided and purchased? Shouldn’t they also be going to the source – the payers? Why don’t citizens intervene with their dreadful politicians blocking single payer?

    The complex social system of healthcare in the US has no clear customer-driven model. If patients want more attention to individual differences and the convenience of their technology and information preferences, how will this be reconciled with a deliberately confusing insurance based payment system?

    Patients have special rights and healthcare (the diligence of care, not any tech procedure) should be treated a human right. But patients are not paying customers. Insurance companies are payers to admins who pay doctors … So how do patients buy the time they need when doctors are already maxxed out?

    • http://twitter.com/RobertAllanBear Robert Allan Bear MD

      Thank you for your thoughtful post. I live in both Canada and the U.S.; the health system in Canada is somewhat different from that in the U.S. But I find great similarities too. In both Canada and the U.S., there is generally no clear “customer-driven model” – as you describe it – for health care. In both countries, political forces interfere and beaurocracies confound. However…politicians do tend to ‘lead from behind’, and I believe powerful patient advocacy, aided and abetted by technology, will be a potent force for change.

    • SidewaysShrink

      I agree completely that patients must take their advocacy to the private payers. Insurance companies made the decision not to pay for E&M codes, for example, this depriving patients of access to the time and knowledge of their providers. Patient centered care is not going to be had at the financial expense of provider’s families, student loans or going to be had free of charge: carved out of what little free time providers have for their families and self care. Patients need to look up the food chain: we are maxed out.

  • http://www.linkedin.com/in/annelizhannan Anneliz Hannan

    Yes, Yes, Yes, the patient as a partner..one who must share in accountability and responsibility! Great provocative post. Thanks

    • http://twitter.com/RobertAllanBear Robert Allan Bear MD

      Thank you for your comment. In fact, the term I prefer is “patient-partnered care.”

  • susanmazer

    While the obvious accuracy in this post makes sense and is true for many patient, the patient population, their families and communities span the gamut from literate to non-literate (e.g can read, but don’t), from wanting control to wanting someoneelse to control, from being digitally capable to not having computer access at all, from being well enough to think through their own decisions, to having a high enough level of acuity to not have the capacity for decision making.  Patient-centered care, at best, is a marketing term that was not intended, actually, to be what the term implies.  Rather, the way I have observed its realization is tht patients are included, considered, acknowledged, have rights and privileges…to some degree.  PCC is the alter ego of Medicus-Rex: The Doctor is king!  The philosophical detachment done surgically, so to speak,  to separate the mind from the body, the person from their skin, organs, and bowels has made possible a system that also deals with patients as statistical pawns. 

    This topic deserves so much more discussion and self-reflection.  I agree that patients do not want to be at in the driver’s seat…but neither do they want to be in back seat…or waiting for a bus!

    • http://twitter.com/RobertAllanBear Robert Allan Bear MD

      Thank you so much for your thoughtful post. I do agree, of course, that marked variability exists in patients’ capacity for health literacy, self-management and accountability. However, the system should be able to encourage even the less able or inclined.
      I am a doctor, and proud of it. But every day I see evidence of the fact that: “patient-centered care is most easily recognized when it is absent.” I see abundant evidence of physician-centered care, and institution-centered care. I witness administrators and staff members of hospitals who have obviously been desensitized! They need a wake-up call! They need to hear another voice!
      So…I believe ‘the voice of the patient’ is a voice calling for change, and ultimately every patient will benefit.
      Thanks once more – Robert Bear

      • susanmazer

        Robert, I agree with you…and yes, patient-centered care is most defined when it is absent. However, what I meant to say, which I think I did not do a very good job of, is that the voice of the patient is often absent even in the nature of patient-centered care. Being fully present the humanity of the patient and their family members requires being fully present for oneself. And, you are accurate…physician-centered…hospital centered…”whose hospitalization is this anyway?”

        Susan E. Mazer
        President/Chief Executive Officer
        Healing HealthCare Systems
        1-800-348-0799 office
        1-775-846-2554 cell
        smazer@healinghealth.com
        http://www.healinghealth.com

  • http://twitter.com/ePatientDave Dave deBronkart

    LOL – what a great thing to pop up in my google alerts!  Where the heck are you located? We gotta have coffee!

    I’m giving a talk in Houston in the morning on patient-centered care, and I’ll cite this post.  Might even toss in a screen grab or two.  I especially love “catchy mantras such as ‘Respect me.’”  Y’think??? :-)

    Seriously, I like your post, and I think what we’re finally starting to see – as smart and compassionate people of all stripes examine healthcare’s challenges – is that people are finally asking “What IS care, anyway?? Seriously, what are we trying to accomplish??”

    That’s really important because we are, already, facing unpleasant decisions about what we have to give up, since the budget is no longer sustainable.  And I expect that more and more people will opt for what THEY consider “caring,” which is not always the fanciest and most modern thing money can buy.

    Seriously too, I’d welcome an outreach – see the Contact page on ePatientDave.com, or  my Nashua neighbor Kevin can connect us.

    • http://twitter.com/RobertAllanBear Robert Allan Bear MD

      Thank you for your comments. My experiences as a Nephrologist, hospital administrator and healthcare consultant have led me to believe that patients are too often at the bottom of the health care hierarchy. Their passivity has been carefully nurtured, along with their insecurities. But…times they are a’changin’. 
      Will also be speaking about patient-centered care at some forthcoming meetings, including American Nephrology Nurses Association next week. We should share notes.
      Patient-partnered care my preferred term.
      Cheers – Robert Bear, Naples Florida and Canmore Canada

  • http://twitter.com/RobertAllanBear Robert Allan Bear MD

    I agree, Susan. Thanks for clarifying.

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