Patient-Centered Care – We Aren’t Ready for It


The follow is a guest post by Aanand D. Naik, MD  @empoweringpts.

We hear lots of discussion nowadays about Patient-Centered Care.  Most legislation for health care reform proposes innovative models of care such as Accountable Care Organizations and the Patient-Centered Medical Home (PCMH) with “Patient-Centered Care” at the core.  Given all the attention: Who could possibly be against Patient-Centered Care?

In this wake, I forward the controversial contention that many patients, probably a majority of health care providers, and every major health plan and health insurer really doesn’t believe in Patient-Centered Care.  Or at the very least, they aren’t ready to change the basic paradigms of health care to cultivate what Patient-Centered Care truly is and what its requires.  Simply put, we aren’t ready for Patient-Centered Care.

To clarify my argument, a clear understanding of Patient-Centered Care is needed.  The first consensus definition comes from the 2001 Institute of Medicine Report, Crossing the Quality Chasm.   The IOM report defines Patient-Centeredness as, “providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions.”  The report clarifies several principles of health system redesign that will better align health care along 6 quality dimensions.  The principles most closely tied to the dimension of Patient-Centeredness include: a) customization of care based on patient needs and values; b) the patient as the source of control; c) shared knowledge and the free flow of information, and d) the need for transparency.

When fully realized, these are powerful principles–they can and will transform health care.  But, they must all occur together to ensure that transformation happens.  If only one or two of these principles are accomplished, especially if only the principles of free flow of knowledge and customization based on patient-need; then there will be little positive change at all.

Don Berwick wrote a wonderful essay in Health Affairs in 2009  in which he describes the lively debate that occurred on the IOM panel that defined Patient-Centered Care.  He defends the “extremist” position and adds his own parameters for patient centeredness: (1) “The needs of the patient come first.”(2) “Nothing about me without me.”(3) “Every patient is the only patient.”   These are compelling additions to the original IOM definition.  What I fear is that without the coexisting principles of transparency and patient control, the “needs of the patients” will be defined by doctors, providers, hospitals, health systems, and insurers rather than patients themselves.

My further belief is that the types of reforms gaining momentum, like PCMH, will actually precipitate and worsen the problems of supply-driven demand and hyperinflation because they will simply increase patients’ acceptance of doctors’ recommendations through “free flow of information and knowledge” and enhanced patient-centered communication.

Without truly making information transparent and giving patients real control of the ends and means of health care, then it’s simply patient-friendly talk and involvement in discussions related to what the doctor thinks is best.

Transparency is more than the free flow of information and patient-centered communication.  Transparency occurs when patients understand “in their gut” the meaning of the health problem and how health care will impact their daily lives.  Patients have control when they choose not to pursue a course of action the doctor might recommend because those outcomes are not consistent with their values or the desired course of their lives.  In the non-transparent form of PCMH, access to health care improves but health costs will continue to skyrocket.

What we need now is real discussion of patient control and transparency rather than platitudes about Patient-Centered Care.  What does it mean to give patients control and can control be helpful and lead to health outcomes that are consistent with our needs and values?  What does transparency really mean?  I wish Steve Jobs was still around to teach us a thing or two about the importance of design and the patient-interface in health care.  As a physician, I know the patient-doctor encounter is sacred and the doctor’s role is indispensible; but I am also fully ready to embrace transparency and patient-control over the ends and means of their health.

Aanand D. Naik is a medical geriatrician and health services researcher at the Michael E. Debakey VA Medical Center and Baylor College of Medicine in Houston, Texas.  Follow him on twitter @empoweringpts  The views expressed here have not been endorsed by either institution.

Sources:

Institute of Medicine, Committee on Quality of Health Care in America. Crossing the Quality Chasm: A New Health System for the 21st Century. 2001, National Academy Press, Washington, D.C.

Berwick, Donald. What “Patient-Centered” Should Mean: Confessions of an Extremist. Health Affairs. 2009, 28:w555-w565.

9 responses to “Patient-Centered Care – We Aren’t Ready for It

  1. Dear Dr. Naik,
    We are hosting just the discussion you suggest on our listserv. We could not agree more that moving people in the direction of verbalizing what is really important to them in their livings and bringing that into the healthcare encounter is paramount and really all of the IOM definitions need to flow from that premise. We have submitted a grant application to PCORI with this focus. It remains to be seen whether or not the people in charge are ready for this tectonic shift. Culture change is not easy but I feel the drivers of culture change need to be patients. We see this culture change in the world of integrative medicine…the interest and need came from patients. the same thing needs to happen here, educate and empower patients and the system will change.
    Thank you for your strong voice,
    Cynthia Calmenson
    Executive Director
    Integrative Medical Clinic Foundation Santa Rosa, CA
    http://www.imcfound.org

  2. Absolutely! You have hit the nail squarely on the head.

  3. Joint replacement patients do want to have transparent information so that they can make life-enhancing decisions. That would include implementing UDI-unique device identifiers, an independent post-market registry and a consent form that accurately defines 1)patient/surgeon/device industry accountability if no improvement in function/pain level is experienced, 2)who “owns’ the implanted device and 3)who is responsible for reporting an adverse event. Currently, uninformed patients with failed implanted devices are in medical and legal purgatory. They trusted that the FDA/Congress had defined some patient protections.

  4. There’s one thing here that deserves special consideration: values. They are difficult to elicit from each individual patient, but are central to the understanding of the patient’s illness. I think some research should go into the study of values related to what disease/illness/ suffering mean in human life. Values are rarely truly personal, they are normally shared by communities. If doctors had studies of the values and outlook on life, disease and death of the different communities their patients may belong to, their understanding of the patient’s perspective would improve tremendously. I’ll give you some examples. A Christian may see disease and suffering as a trial sent by God to test his belief or to improve his soul. Or he may see it as divine punishment for sins. The difference is obvious. The former would help the patient heal, the latter would probably have a negative impact on his prognosis. Another example is the way in which cancer can be seen: a terminal disease or a mechanism of healing gone out of control. All the cancer survivors speak about the spiritual experience of their healing. There’s a lot in common. That’s why these things should be studied systematically, and there should be some awareness raising among doctors related to how important such issues are in their patients’ handling of the disease. I recently talked to a group of oncologists about the patient-centred approach and had a very frustrating experience. They refused to speak about values and the various ways in which cancer can be seen and is discussed on the internet or in the Bible ( 90% of their patients being practising Christians), for example, saying they don’t have time for philosophy, they just need to be told how and what to say to their patients when they tell them they have cancer. I think this attitude of doctors, i.e. being interested in their scientific approach only and refusing to make the effort of understanding their patients’ approaches, which may be very different but are crucial in determining the patient’s attitude to his illness, should be changed. And research and comprehensive studies in this field would help a lot. We’re speaking about patient centred medicine a lot. Nevertheless, very few studies- psychological, sociological, anthropological,etc. -exist in the field of the patient’s perspective, which is not as unique as some seem to think. We do share a lot. We may be unique combinations, but the building blocks are similar. I’d start any discussion of the patient’s perspective with the study of his cultural background and the common values shared by the community today.

  5. Jed Constantz

    Dr. Naik,
    Your observations are important to ensure the successful and “sustainable” expansion of the Medical Home Model of Primary Care. The transparency you speak of, I suggest, goes to the level of “accountability” we can create regarding the motives and outcomes of the applicable primary care community seeking to become a “high performing” primary care practice. For example, “hospital owned” primary care is all to often “rewarded” to keep ’em sick, and keep ’em coming by their hospital sponsor. In addition, some health plans involved in so-called PCMH pilots aim their “rewards” at certain “Healthcare Effectiveness Data and Information Set” measures rather than how effective they are at reducing aggregate spending. Some health plans, from a “loss ratio” perspective, must maintain high premium equivalents to maintain bloated administrative loads. Many health plans speak of “reducing the ‘rate of increase’ of plan premiums” versus reducing the total cost/spend. Plan transparency, in this regard, is just as important.

  6. Pingback: Patient Satisfaction and Quality Outcomes: Can We Have Both? « Ted Kolota

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  8. I know I’m late to this discussion. I agree that we aren’t ready. The medical profession and the government are still working on what they can and need to do “for and to” the patient and discounting or not truly understanding what the patient needs to know and do for him or her self in order to obtain the care they need. Patients on the other hand don’t feel they need to participate differently than they currently do and aren’t willing to learn how important it is that they do so. They don’t know what they don’t know. Until patients take responsibility and learn what they need to do, the medical system will remain broken for them as an individual until they do.

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