GETTING THROUGH TO PATIENTS

The administrator at my church is diligent in devising and following through on new strategies for getting the message out about worship, events and other church-related matters. And yet invariably she’ll hear from a member upset about missing something important that was well publicized via email, newsletter and posters, who asks, “Why didn’t you let me know?” The saying that comes to mind: You can lead a horse to water, but you can’t make it drink.

For doctors and patients, the stakes are higher. But while doctors generally need to improve their communication skills with patients, especially when the subject is goals of care at end of life, even physicians gifted at communication have difficulty being heard. In a recent blog entry (Accepting Mortality), I loosely referenced studies showing what doctors are up against in getting patients to clearly understand their plight. It seems many patients come with built-in spin control that filters out bad news and clears shelf space only for the positive. I learned of this from a Boston Globe story by Elizabeth Cooney, dated September 20, 2010, quoting from separate studies by Baystate Medical Center and Massachusetts General Hospital.

In the Baystate study, heart patients believed stents would prevent heart attacks and death even though their cardiologists were clear in explaining that the best the stents could do was relieve chest pain by opening clogged arteries. The MGH study concluded that, in the Globe reporter’s words, “people considering serious decisions about knee replacements, prostate cancer tests, and long-term use of medications such as cholesterol-lowering statins did not hold a balanced picture of the consequences of their choices.” This study was based on a national survey.

Dr. Michael Barry, of the Foundation for Informed Medical Decision Making and senior author of the MGH study, said a patient who focuses on the positive “probably fits the American psyche about preferring action to inaction. ... Patients often have an exaggerated view of the benefits.’’

Informed consent is problematic, Cooney writes, because patients must make crucial judgments at the very time they’re overwhelmed by fear, pain, or confusion. This was certainly true for me, when my daughter was diagnosed in 2005 with severe aplastic anemia, and life-and-death decisions had to be made with no time to waste. She was cured by bone marrow transplant, and is healthy today. But five years later, there remain major inconsistencies and striking differences in the way my wife and I remember conversations with doctors and nurses. Left to me and my shock-diminished comprehension, consent would have been guesswork, and my daughter might not have enjoyed such a positive outcome. But with the support of my wife and other family, and through repeated and difficult conversations with doctors and nurses as well as our own research, our decisions ultimately were very well informed.

Cooney also writes that “doctors may not be the best communicators.” During my daughter’s illness, I experienced doctors of such understanding, patience and compassion who were enormously helpful, explaining things as often as my thick brain required. I also experienced one particular doctor whose medical intellect and comprehension of my daughter’s situation was extraordinary and invaluable, but whose edgy personal style scared the hell of out both my wife and I. Then again, maybe that doctor’s style was just right, in that I never left our conversations hearing only the positive. The negative was made very, very clear.

“After seeing a specialist,” Cooney writes, “patients may turn to a primary care doctor, if they are lucky enough to have one who knows them well. Some specialists favor decision aids that explain a treatment in standard terms, including risks and benefits. These could be videos on a DVD that the patients could watch at home and then, when they return for another visit, ask questions about what it means for them individually.”

She quotes Dave deBronkart, who blogs as ePatient Dave, and who has thought much about communication and other interactions between doctors and patients (www.epatientdave.com and www.patientdave.blogspot.com). His own insights stem from being diagnosed with stage 4 kidney cancer in January 2007. “My advice is, first of all, it’s increasingly wise for patients and families to take an active role in learning what they can about treatment options, and realize we’re all prone to wishful thinking,’’ deBronkart said. “It’s smart to have somebody else check your work.’’

Every patient needs an advocate of some sort. Going head to head with a medical specialist of high intellect can be daunting, and not all have the self-confidence or requisite skills to truly speak up in such a situation and force the issue until real understanding is achieved. And the patient ultimately controls both the pace and most effective means of real understanding, which can require being demanding and difficult. It’s also a comfort to think the doctor knows just what’s right, and will make all the important choices. If I didn’t have my wife and others looking out for my daughter’s best interests, I’d have been desperate for a clear-headed someone who had my daughter’s back. “Partner with your physician,” deBronkart says. “Ask lots of questions. Call back, and ask more.’’ Great advice.

Dr. Angelo Volandes of MGH is a strong proponent of visual aids in decisionmaking. “I think physicians are still in the mindset of the way physicians have been talking to patients since Hippocrates, using words and concepts that most patients have no clue about,’’ he told the Globe. “Our argument is that pictures do a better job at communicating information to patients.’’ According to Volandes, patients who only hear doctors describe options are significantly less likely to choose palliative care -- that is, comfort care at the end of life -- than patients educated by watching videos. Patients better understood choices they could see.

That certainly fits with what I’ve seen in the classroom at my daughter’s school, which is increasingly adept at appreciating and understanding the range of learning styles among different children. That same range of learning styles is true among patients, and so the more ways of communicating, and the more repetitions, the more likely understanding will be achieved. And the earlier that dialogue begins in the treatment process, the better.

-- Though Paul C. McLean is a member of the Community Ethics Committee, this blog entry does not necessarily express the views of the CEC or other members.