“We Can Take It Out”

If you–as a patient or health professional–believe most physicians do a decent job informing their patients about their health care, you’re fooling yourself.  The patient has to take the initiative to learn what’s going on.

Lots of studies show the inadequacy of physician-patient communication. No study that I know shows it’s adequate.

Just this month, for example, the Annals of Internal Medicine published a  study by Michael Rothberg and colleagues showing that most patients undergoing an angioplasty did not understand the purpose of the procedure.  The patients mainly thought the procedure would help prevent a heart attack, but their physicians said the purpose was just to relieve  symptoms.

Confused?

The authors note, dryly, the “communication gap” between physicians and patients.

On September 20 the Boston Globe published an article by Elizabeth Cooney headlined “What Doctors Say Is Often Not What Patients Hear.”  Cooney writes:

The doctor says: You have cancer, but we’re not sure whether it’s the kind that will spread.  So you’ll have to weigh the risks and benefits of treating it versus waiting to see whether it gets worse.  The patient hears: You have cancer.  We can take it out.

She notes that patients tend to hear the pros and not the cons of treatment, according to Michael Barry of the Foundation for Informed Medical Decision Making.

As a patient, you need to tell your doctor what, as you understand it, the proposed tests, procedures, and care will accomplish. You have to ask questions.

Alert Patient Prevents Disaster

Earlier this month,  the admission of my friend “Don” to a community hospital promised to be routine.   He would be observed in the hospital for three days while a powerful new drug was introduced to address his irregular heart beat, or arrhythmia.

If all went well in the three-day hospital stay,  Don then would proceed to take the drug regularly at home,  instead of the less potent drug he’d been taking for a long time.

After going through the hospital’s admission procedure, Don was taken to his room.  There, his nurse, “Karen,” introduced herself .  He said, “I’ve got a question.  I’ve been trying to get an answer from my doctor, but I haven’t been able to.”

“What’s your question?”

“I don’t know whether I’m supposed to be taking my regular daily medication while I’m here,” said Don.

“Are you concerned about something?”

Our Own Worst Enemy?

Patients–health care consumers–can be too clever by half.  Too skeptical of the motives of health professionals, hospitals, insurers, and government, many patients appear to make a habit of ignoring medical advice.  They think they are smart to do so.

Example of Cancer Guideline

The gap between the conventional wisdom of the health establishment and the defiant doubt of many patients is explored in a recent article, wittily entitled “Evidence That Consumers Are Skeptical About Evidence-based Health Care.”

There, author Kristin Carman and colleagues suggest it will be hard to persuade consumers to accept treatment based on clinical guidelines, also called “protocols” or “best practices.”  Why?  In a multi-pronged study, the authors found:

. . . there is a fundamental disconnect between the idea of evidence-based medicine and many consumers’ beliefs, which don’t account for variation in quality among providers [that is, the idea that some doctors are better at some things than others] and don’t allow for cost-effectiveness [the idea that some medical procedures are worth what they cost, while others aren’t].

In other words, a lot of patients (are you one?) think any advice to forgo a particular treatment or procedure is based mainly on the economic interest of the source of the advice.  I for one have run into this attitude a lot:

• Patients and families insist on futile and heroic measures at the end of life, because they think recommendations for hospice or palliative care are intended to save money, rather than improve quality of life.
• Patients (I’ve seen this in my own family) unnecessarily suffer debilitating medical conditions rather than go to doctors, who they think are just interested in making money.
• People ignore public health recommendations to get flu vaccines, even during flu epidemics, because they don’t trust the recommendations or assurances that the vaccine is safe.
• Heavily influenced by ads, many patients insist on expensive new drugs, when their physician wants to use an older, cheaper drug that is safer and just as effective.
• For years, many HIV-positive African-Americans and Africans refused retroviral treatment, because they believed that HIV was a ruse created by whites to cover up their diabolical role in infecting black communities with AIDS.

The issue is important.  There’s a movement afoot to create and enforce more evidence-based guidelines, which already are often used in cases of heart attack, stroke, HIV/AIDS, and other conditions.  These protocols are called “evidence-based,” because they reflect findings about what happens to most patients who receive a particular treatment as opposed to other treatments.   Resistance to guidelines will forestall improvements in the quality of care.

A vicious cycle will result.  First, people will be sicker for not following the guidelines.  Second, many doctors will take their cue from patients and will ignore guidelines, too (doctors already ignore them far too often).  Third, organizations won’t bother to develop new guidelines, since developing them takes a lot of work, and there’s no point writing guidelines that will be ignored.

What can  you do?  When you and the doctor are discussing your course of treatment, ask whether any clinical guidelines have been developed for your condition.   After all, you want care that meets the most recent, most evidence-based standards.  Why not the best?

Take care.

Photo credit:  sniperslaststand3.  Attribution.

“All That Matters Is the Person”

For eight of the last days of his life, psychiatrist William Gruzenski, a patient in intensive care, was allowed to see his wife Jackie only during tightly limited visiting hours–a restriction  she  found “very cruel.”  Moreover, the hospital staff ignored his request to address him as “Doctor.”

This bad experience was the focus of a commencement speech given at Yale Medical School earlier this year by Don Berwick, now the director of Medicare and Medicaid.  Berwick called on his new fellow physicians–including his daughter Jessica–to temper the massive power they will wield over people’s lives.

He explained:

What is at stake here may seem a small thing in the face of the enormous health care world you have joined.  It is as a nickel to the $2.6-trillion industry.  But that small thing is what matters.  I will tell you: it is all that matters.  All that matters is the person.

Berwick spoke eloquently at Yale of the need for compassion in medical care.  He said that physicians aren’t just clinicians:

[N]ow I will tell you a secret–a mystery.  Those who suffer need you to be something more than a doctor; they need you to be a healer.  And, to become a healer, you must do something even more difficult than putting your white coat on.  You must take your white coat off.

There is little to add here to this appeal to humanitarianism in medicine–except that Berwick’s speech perpetuates the notion that physicians have the power.  It suggests that patients are mere recipients of physicians’ advice, care, and communications.

Talk to Your Doc to Avoid Cookie-cutter Care

Does your doctor know what you want?

Doctors generally lack a good understanding of their patients’ beliefs and desires–but the doctors’ knowledge improves a lot when patients ask questions and discuss their preferences.  So says a study published last month in the Journal of General Internal Medicine, summarized in ScienceDaily, and brought to our attention by a kind reader.  (Thanks!)

The study examines more than 200 physician-patient encounters.  It was conducted by Richard Street of Texas A&M University and Paul Haidet of Pennsylvania State University.

Like most advocates of better physician-patient communication, Street and Haidet call on physicians to ask patients for their views.  For decades, such advice has been falling on doctors’ mostly deaf ears.  A patient who wants to be heard probably has to take the initiative. That’s the main point of this blog–and our book.

Conversation between the physician and patient is an essential element of care that is “personalized” or “tailored” or “patient-centered”–all terms that mean just about the same thing. 

Readers Share Their Experiences

Take a look at three experiences that readers have shared with me during the past few days.

“Connie” has been visiting doctors because of a problem that might involve one or more organ systems–or might be nothing significant.  Apparently, the radiologist now wants to run a third test.  Connie wonders whether such extensive testing is worth the risks of possibly excessive exposure to radiation.

Radiology is indeed an area of overuse.  Yale University radiologist Howard Forman told an Institute of Medicine workshop last year that the demand for “one more test”–often supported by the argument, “Don’t you want to rule out a really serious disease?”–leaves patients unprepared to resist unnecessary imaging tests.

Researchers have found that (except for mammography) “habit, anecdotes, and biases”–including a desire to avoid malpractice liability for undetected cancers–play the greatest role in physicians’ recommendations for imaging tests.  Benefit-cost analysis and benefit-risk analysis play only a small role.

Connie might be wise to consult with her primary care physician (see our Aug. 3 post on primary care, below).  She’s entitled to a plan of care that lays out exactly what measures will be taken, depending on potential clinical and test findings.  Otherwise, she may continue to lurch from test to test, with no resolution in sight.

Connie will have the best chance of persuading her primary care doc to help develop a care plan if she plans her visit (as discussed in our book in section 1 on “Presenting a Problem to a Physician,” available on this site at no charge).  She also could bring an advocate with her (section 7 is on “Bringing a Friend with You to the Doctor”).

Communication Failures Swamp Hospitals

In another case of proving the stunningly obvious, a new study has found that hospital patients and their physicians have dramatically different recollections of their conversations.  Here’s what was found, why it matters, and what individual patients–not just the notoriously slow-to-act medical establishment–can do about it.

As reported yesterday by HealthLeaders Media, the study involved 89 patients and 43 physicians at Waterbury Hospital, a teaching center in Connecticut.  Conducting the study were the hospital’s chief primary care resident and the associate director of its primary care program (see our Aug. 3 post on primary care, below).  The prestigious Archives of Internal Medicine published the study report.

Among other findings, the study found:

• Only 18 percent of patients could name their attending physician, although 67 percent of the physicians said the patients knew their names.
• A mere 10 percent of patients said the doctors advised them about adverse effects of newly prescribed drugs, although 81 percent of physicians said they did.
• Most patients (54 percent) said physicians did not discuss the patients’ fears and anxieties, although nearly all physicians claimed to have discussed them.

Doctor Rating Systems: Not Much There

News media and commentators are giving greater attention to doctor ratings compiled by health plans, online forums, and other groups to aid patients and families in selecting physicians.   These rating systems aren’t very helpful, for a slew of reasons:

1. As a Washington Post article noted last week, most ratings ignore physician-patient communication–whether the doctor is skilled and committed in listening, explaining, and asking questions about the patient’s concerns.
2. Health plan rating systems emphasize performance factors that matter most to the plan, not to the patient.  These include factors like (a) keeping costs down by not ordering a lot of tests and procedures, and (b) following  the plan’s protocols. 
3. 3. Online forum rating systems, along with similar listings such as magazine ratings, are not based on any set criteria.  Basically, they’re just impressions and lack scientific validity.  (We here have been really pleased with a computer technician we found through Angie’s List, but I have no intention of using Angie to identify someone as important to me as a surgeon or cardiologist.)

Primary Care: The Key Patient Interface

Most visits to a doctor are visits to a primary care physician–typically a family doctor, general internist, or sometimes a general pediatrician or obstetrician-gynecologist–who is responsible for the patient’s routine medical care.  If you develop a productive, satisfying relationship with your primary care practitioner, you will be well along the way to effective communication with all your health care providers, present and future.

Let’s start by looking at what primary care is, and why it’s important.   This is almost holy ground for me.  My first job after school was to work on an Institute of Medicine study that developed the authoritative definition of primary care, still widely cited decades later.  We said primary care is “accessible, comprehensive, coordinated, continuous, and accountable care.”

In other words, the primary care practitioner is your portal to the health care system and, more than that, oversees all your health care, from episode to episode, as your agent.  You can, for example, use him or her to:

• refer you to any type of specialist and, afterward, help you decide whether to undertake a procedure the specialist recommends
• answer any of  your questions about changes in your health or about health-related ideas you’ve encountered, and
• give you useful instructions for preventing disease or managing your own self-care in light of your lifestyle and resources.

This is a terrific deal!  Researchers have found that primary care is “associated with superior health outcomes.” Yet, it generates only a tiny fraction–less than seven percent–of all health care costs.

Physician-patient Communication Makes News

News of a sort, that is.  Health Affairs, the top health policy journal, gives rare attention to the subject in its July issue.  The news is two-fold:

• More than ever, the health policy establishment is recognizing that effective physician-patient communication is essential to high-quality care.
• And, researchers are saying that physicians need intensive communications training in order to interact successfully with patients.

The Health Affairs article focuses on the physician side of communication, while our blog focuses on the patient side.  We patients benefit, though, from knowing what the researchers are telling physicians.  Then, we can develop appropriate expectations for our doctors’ conversations with us.  So, read on.

The three authors of the article are Canadian Wendy Levinson, internal medicine executive Cara Lesser, and Ronald Epstein MD, director of the Rochester Center to Improve Communication in Health Care.   They note that physician-patient communication is a “sophisticated process”–not just a hodgepodge of feel-good platitudes.  For example, it’s linked to better outcomes of care for patients with diabetes, hypertension, and cancer.