The Challenges of Patient-Centered Care

At the heart of health reform is the idea of “patient-centered care.” The Institute of Medicine defined the term a decade ago as: “Healthcare that establishes a partnership among practitioners, patients, and their families (when appropriate) to ensure that decisions respect patients’ wants, needs, and preferences and that patients have the education and support they need to make decisions and participate in their own care.”

The Institute for Healthcare Improvement (IHI),  a non-profit organization that works with providers on developing new models of care that improve safety and outcomes further calls for taking into account, “patients’ cultural traditions, their personal preferences and values.”

In recent years, the term has become ubiquitous, used to promote not only health insurers, hospitals, out-patient clinics and a whole range of other commercial health care enterprises, but also to describe wildly different proposals from both ends of the political spectrum for retooling the nation’s health care system.

But despite being so widely co-opted, the idea of engaging patients in their own care—and taking an individual’s preferences and unique “story” into account when deciding treatment and end-of-life decisions—promises to not only improve the experience and quality of health care, but will also reduce waste, over-treatment and, ultimately costs. An article in the British Medical Journal, for example, finds that “reduction in blood pressure was greater in patients who, during visits to the doctor, had been allowed to express their health concerns without interruptions; and, in patients with headache, improvement was most likely in those enabled to discuss their condition in full.”

The problem is that aside from all the lip service devoted to patient-centered care, there are significant barriers to really achieving the ideal. (The BMJ article defines them as Time, Motivation and Wisdom.) From the provider side, the reality is that it is very hard for physicians and other providers to work all that “engagement” into a standard 15-minute office visit, (or an even shorter bedside consult in the hospital). And many practitioners still operate under the “more procedures, more profits” concept that has personified fee-for-service medicine for so long.

I think of my latest visit to a dermatologist for a yearly screening for skin cancer or other “suspicious” lesions, a check-up that is usually brief and routine. The doctor quickly scanned my file, did a 5-minute visual inspection, declared me free of anything suspicious, commented on sun damage and age-related spots and then asked if I had any questions. I had none. But before leaving the room, he did point out that if I was interested, one or two Botox shots could do miracles for the deep frown lines between my eyebrows—brochures quickly appeared.

Now, had we discussed my “cultural traditions…personal preferences…and values,” my dermatologist would have quickly discovered my aversion to cosmetic procedures. I left feeling grateful that I had so far dodged serious side-effects of my youthful sun-bathing (and burning), but also newly paranoid about wrinkles and furrows and questioning the doctor’s ulterior motives. Was he more concerned about profits than making me a contented patient?

Providers are not the only ones having a hard time incorporating “patient-centered care” into their routines. Jessie Gruman, a cancer survivor and advocate who is the founder of the Center for Advancing Health writes that some patients can also be ambivalent about being actively engaged in making decision about their care. This  “is inconsistent with our idealized vision of health care that, tattered as its image might be, will step in, take over and fix what ails us.”

For example, Gruman writes on the blog Prepared Patient, some people might view an innovation like the “medical home” where a primary care provider coordinates care we receive from specialists, hospitals and other providers, as a “cleverly disguised gatekeeper” (think 1990’s-style managed care) whose real role is to restrict care and save insurers money.

And the idea of “shared decision making” which requires that a patient take an active roll in making informed choices about care? Gruman writes; “I still hear people describe their experience with shared decision making as an admission of ignorance by their clinician: ‘She’s the doctor. Why is she asking me? I don’t know what to do. That’s why I asked her,’ or with concern that this is an attempt by clinicians to shift legal liability to them.”

Patient engagement is also highly dependent on the willingness of caregivers to take the time to communicate effectively. If a doctor rattles off a diagnosis, followed by a rapid review of possible therapies without explaining complicated medical terms or providing an understandable description of risk, it’s extremely hard for patients to get involved in the decision-making process. I recently wrote about doctor’s resolutely ignoring evidence when treating stable coronary artery disease; downplaying the value of drug therapy vs. invasive (and far more expensive) interventions that involve propping open blocked arteries with stents for reducing the risk of heart attack.

In the post, published in May on HealthBeat, I report that twelve studies found that for “patients with stable coronary artery disease, trying a course of medication first (at a yearly cost of hundreds of dollars) before resorting to interventions that involve cardiac catheterization and placing drug-eluting stents into arteries (a procedure which can cost up to $48,000) made good sense both in terms of cost and in the quality of care.” But despite that substantial evidence, “fewer than half of the patients with stable coronary artery disease are being treated with medication before going straight to PCI [percutaneous cardiac interventions].

The underlying message here is that patient-centered care is impossible without meaningful dialogue. And meaningful dialogue is hampered by time constraints, low health literacy among certain patients, and time-worn practice patterns that value interventions, high-tech medicine and, yes, profits over less aggressive or older therapies.

This takes me to my final point about engaging patients in their own care; talking about how much things cost. In the past, many of us enjoyed health plans sponsored by employers or unions that pretty much paid for whatever care we received. It really didn’t matter to us if the internist rolled out the portable EKG machine for a quick reading even if we were only there to have a sore throat checked. And we didn’t ask if she ordered an MRI for a backache or prescribed a name-brand antibiotic instead of a far-cheaper generic brand.

But all that has changed. Many of us now have health plans with very large deductibles, co-payments and requirements for prior authorization before we have any tests or out-patient procedures, for example. Some 50 million Americans have no health insurance and must pay out of pocket for much of their care. The reality is that removing waste, over-treatment and profit-driven abuse from both private and public insurance like Medicare and Medicaid is our only hope for driving down health care costs.

So, in making decisions about care, we also have to be informed about cost—to be health care “consumers”. This has historically been difficult both for patients and providers who seem to view such discussions with a mix of emotions: i.e. “Why should cost be a factor in deciding how I am treated? Isn’t that like rationing care?” Sometimes it feels like discussing the price of care is vulgar, or socially unacceptable. Sometimes, providers have no idea how to answer. To jump-start patient discussions about cost of care, the Regence Group produced a video called  “Five Questions” ; click on the link to have a look.

Keep in mind that Regence is a licensee of Blue Cross/Blue Shield that operates health plans in Oregon, Washington State, Idaho and Utah and would very much like for patients to get more involved in reducing medical costs. And the suggestion that people go to the Internet to explore a health problem before seeking medical advice only works for tech-savvy patients who know where to find evidence-based information on reliable sites. Doctor Oz may not be a good substitute for your in-the-flesh provider.

In the end, patient-centered care is a laudable concept. It is the stated goal of medical homes, accountable care organizations and many other initiatives included in the health reform legislation. Making it possible will require fundamental changes both in how we pay for care (valuing conversation over procedures; reorienting payment toward evidence-backed care) and a rethinking of the traditional doctor-patient relationship.