Guiding patients through fragmented health care

“The most important thing I learned was that different doctors know different things: I need to ask my internist different questions than I do my oncologist.”

This was not some sweet ingénue recounting the early lessons she learned from a recent encounter with health care.  Nope.  It was a 62-year-old woman whose husband has been struggling with multiple myeloma for the last eight years and who herself has chronic back pain, high blood pressure and high cholesterol and was at the time well into treatment for breast cancer.

Part of me says “Ahem.  Have you been paying attention here?” and another part says “Well of course!  How were you supposed to know this?  Have any of your physicians ever described their scope of expertise or practice to you?”

I can see clinicians rolling their eyes at the very thought of having such a discussion with every patient.  And I can imagine some of us on the receiving end thinking that when raised by a clinician, these topics are disclaimers, an avoidance of accountability and liability.

But all of us – particularly those receive care from more than one doctor – need to have a rudimentary idea of what each clinician we consult knows and does. Why is this clinician referring me to someone else? How will she communicate with that clinician going forward? How and about what does she hope I will communicate with her in the future?

Why does our clinician need to address these questions?

Because in the absence of real guidance we will guess.  Some of us will make informed guesses and be mostly right. Others of us will leave our primary care provider in the dust and seek care for routine health matters from our specialist, whom we see more frequently and who seems to know us better. Some of us, like my friend above, will ask for help from whichever physician is handy and will call back, regardless of the problem.  And some of us will throw up our hands in frustration and head for the local emergency department when we find we can’t breathe and don’t know which of our doctors to consult about those damn allergies.

These ad hoc solutions are a waste of our time and surely contribute to a poor use of clinician and institutional resources.

Fragmentation of health care and lack of coordination of services are widely recognized as problems.  Considerable efforts now aim to improve communication among providers when a person leaves the hospital, for example, and great stock is placed in the potential of the new patient-centered medical homes to “coordinate” our care (although the parameters of such coordination have yet to be defined).

There has been little or no recognition, however, of the fact that we patients and our families and loved ones are the main coordinators of all care: We decide when a threshold of discomfort has been crossed and we need professional help.  We decide from whom and in what setting to seek such help.  And for the foreseeable future, unfortunately, we choose to share the test results and treatment plans from one of our clinicians with another – or not.  And we are doing this without guidance.

What would guidance look like?

Well, it doesn’t look like a website.  More likely it has clinicians taking these small steps:

Clearly introducing their expertise, their experience and their role relative to other clinicians caring for us. This needn’t be highly technical or take a lot of time but it does need to differentiate one clinician’s role from other specialists’ or primary care provider’s, anticipating that I and my caregivers may be confused about which problem is best addressed by which doctor.  Connie Davis, a geriatric nurse practitioner in British Columbia, says, “When I introduce myself to the patients I serve, I say, ‘I’m a geriatric nurse practitioner. Have you ever worked with a nurse practitioner before?’ If they haven’t, I tell them that I am a nurse with additional training, so I am somewhere between a nurse and a doctor and that I work with older adults to address common health concerns and make sure everything is working as well as possible.”

Giving simple but full explanations about referrals. Why, to whom, for what, expectations about ongoing care and future communication, both between physicians and between the referring clinician and the patient.  Such an explanation lays out a template for us to more easily find the right solution to the current problem.  Further, many of us assume that because the receptionist uses a computer, our records are automatically electronically (and magically) transmitted to every other physician to whom we are referred.  We can’t do our part to support inter-physician communication if we believe it is being done for us already.

Saying, “That’s not my area of expertise.” As someone who is “doctored up” with about 15 physicians treating me right now, I sometimes guess wrong about what any one of them considers within their expertise.  I get a little frustrated but am ultimately reassured when one of them responds to my question with “Not my body part,” or “You need to talk to your primary care provider about that.”  A survey released by the National Alliance on Mental Illness found that patients and family members are concerned when their doctors don’t tell them they lack expertise about a condition: 75 percent of parents of kids with mental illness who were surveyed doubt their primary care providers’ abilities to treat their kids effectively.  It’s difficult to establish a “continuous healing relationship,” as the Institute of Medicine report Crossing the Quality Chasm encourages, when questions about clinician competencies are not directly addressed.

Don’t get me wrong. System-level fixes such as  tailored online information, interoperable electronic health records with good patient portals and enhanced primary care will ease some of the redundancy and fill some of the gaps that now by default (and often without our recognition) fall to us to patch together.  But at the end of the day, it’s my mom deciding whether to call the cardiologist, the neurologist, the geriatrician or 911 about my disabled dad’s sudden dizziness.  She’s the one who coordinates his care.

She also needs help from her clinicians to fulfill this responsibility.  As do we all.

Jessie Gruman is the founder and president of the Washington, DC based Center for Advancing Health. She is the author of Aftershock: What to Do When You or Someone you Love is Diagnosed with a Devastating Diagnosis. She blogs regularly on the Prepared Patient Forum.

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