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Published in CenterView on September 09, 2013

Caregivers struggle to balance paternalistic approach, respect for individual rights

By Gary Pettus

The case of the woman who died in childbirth still haunts and mystifies Dr. Michelle Owens.

It was an unusual case in some ways, but the patient's lack of trust was not, and it contributed to the outcome, Owens and others believe.

"During her checkups, she'd just smile at you and then say, 'Yeah, you know I'm not going to do that,'" said Owens, associate professor of obstetrics and gynecology.

"When we ask patients to do something, we really believe it's going to make a difference, or that it's going to make them feel better. When they don't listen, it is frustrating."

For some physicians, patient noncompliance is so frustrating, and common, that they've been pushing back against a decades-old ethical principle in medicine: patient autonomy - the resolute respect for a competent patient's decision-making ability.

"There is a growing opinion . . . that patient autonomy has gone too far," said Dr. Ralph Didlake, professor of surgery and director of the Center for Bioethics and Medical Humanities at UMMC. "The way we practice it in the United States is not always a social good."

Commentary in the April 2008 issue of "Minnesota Medicine" argues that patient autonomy has been "too successful." It claims that, at times, autonomy can prevent physicians from acting for the patient's good, has dwarfed other important principles, and because it is seen as the only permissible ethical tool available, has been used even when it was wrong for the job.

Those involved in the case of the expectant mother at UMMC would probably say that it was wrong for that job.

The woman was educated and apparently of sound mind, had health insurance and no apparent religious objections to the care prescribed. She was warned that she suffered from conditions that put her at risk for bleeding, but she refused to believe it.

She bled to death on the way to the hospital.

It was a death so troubling to those who had tried to warn her that it inspired a bout of soul-searching and spleen-venting during a recent session of Schwartz Center Rounds.

Autonomy - the issue at the root of the case - is the flip side of paternalism, which shaped the typical physician-patient relationship of 40 or 50 years ago, when a doctor's word was law.


Didlake is among those who believe the turnaround has benefitted physicians as well as patients.

“It holds us a little more accountable,” he said. “I believe we practice better medicine when we honor the patient’s autonomy.”

To illustrate to his students how much medicine has changed since the days of “I Love Lucy” and “I Like Ike,” Didlake shows them clips from movies such as “The Big Bluff,” a 1955 melodrama in which a physician doesn’t tell his patient she’s dying; he even enlists her family in the ruse.

“By the 1970s, the overwhelming policy among physicians was to disclose,” Didlake said.

It was the counterculture, authority-busting movement of the 1960s that helped birth autonomy.

“Also, over the years, more and more professions became professionalized like medicine,” Didlake said. Within this rising flood of expertise, doctors’ potent social status became diluted, as did acceptance of their infallibility.

Other, more recent developments buoyed this shift.

“The physician is no longer the keeper of all information,” Didlake said. Because of popular medical websites, etc., previously elusive medical intelligence spreads like a cold.

Or, as Owens put it: “When a patient decides not to do what I ask, do they not believe me, am I not conveying the message? Or do they go to Dr. Yahoo and find what they need?”

Patient access to medical information, especially through technology and social media, is a good thing, and there’s not enough of it, said patient advocate Regina Holliday, a Maryland resident who blogs about a movement known as participatory medicine.

“Once we have total access, we can be more effective,” she said. “Patients want to be part of the treatment team. They know their condition like nobody else, because they’re living it.

“In many cases, patients are not treated as an equally valued team member.”

Holliday’s activism grew from her late husband’s tragedy. Frederick Holliday II, a kidney cancer patient, fought for 11 weeks to get “appropriate care” before his death in 2009, she said.

Today his widow speaks publicly about the benefits of giving patients a final say in their care.

“Peace of mind is one,” she said. “They are able to get second opinions and seek alternative treatments.

“It is the right of all patients to refuse a diagnosis and recommended treatments if they are of sound mind.”

If a patient’s competency is not in question, “then you just have to respect her decision,” said Jonathan F. Will, associate professor of law at Mississippi College, founding director of the Bioethics and Health Law Center there and affiliate faculty member of the Center for Bioethics. “It comes down to this: Who knows what’s in my best interest, me the patient, or the physician?

“There are factors other than best medical outcomes that make me me.”

The outcome “is not the only thing at stake,” he said. Also at stake are religious beliefs, the stage of a patient’s life, the family’s wishes and finances. For others, it’s simply an unwillingness to take some, or any, of their medicine out of fear, denial or something else.

“So they may say, ‘I won’t take a shot, but I will take a pill,’” Owens said. “Or, ‘I will take my blood pressure medication, but only when I have a headache.’ Of course, they get a headache because they didn’t take their medicine.

“There are some people who won’t accept a diagnosis and the lifestyle changes it requires. And you, as the physician, can’t just pick up the phone and say, ‘I’m going to call your mama and tell on you.’”

This is how patient noncompliance usually plays out for Kim Dukes, nurse manager for the Surgical Intensive Care Unit: “Some patients sell their insulin for drug money. Or they trade it for other drugs. Usually, it’s someone who didn’t have the money for their blood pressure medication after a stroke.”

But the woman whose death stirred up the Schwartz Center session was a new one on her.

“We couldn’t wrap our minds around this case.”

It reinforced the realization that “I’m not in control,” Dukes said. “I can only do what I’m allowed to do by law, by my values and by my God.

“We can’t force what we believe is right on somebody else, but it bothers me if you don’t comply. To do this job, you have to care. If it didn’t bother me, then I need to find something else to do.”

The case in question motivated many at UMMC to take a harder look at autonomy, even though they agree with its basis: respect for the rights of the individual. But many also agree that there must be more “balance” between autonomy and nearly-extinct paternalism.

“You have to find a balance between giving patients a medical school lecture and giving them that level of comfort that what you’re asking them to do makes sense,” Owens said. “When a patient won’t comply, you have to ask, ‘What are the barriers? What is the problem?’

“Sometimes they don’t feel they are strong enough to do what they need to do alone. So the support person they bring with them to their appointments – the father of the baby, the grandmother, that person of importance – can be allies in urging compliance.”

For Didlake, it mostly comes down to taking time to listen to the patient. The problem is that, in many ways, all patients are treated the same, he said.

They come to the same hospital, where they put on the same gown, fill out the same forms, and so on.

But each will experience a disease differently because of their personal story, their context. And that’s what the physician must discover in order to conquer what Owens calls the “barriers.”

“If a patient needs surgery to treat, say, colon cancer, and refuses it, most surgeons would say, ‘I won’t be your doctor,’” Didlake said. “When they do that, are they protecting themselves legally, or is it that they don’t want a bad outcome? Aren’t you being more of a doctor when you say, ‘I’m willing to be your doctor, and if you decide later you want me to operate, I will?’

“Illness is how you experience a disease and that is determined by context. Maybe our challenge is to more deeply understand these patients and their illness, rather than just their diagnosis.”

Patient noncompliance

•    20-30 percent of patients do not fill new prescriptions

•    50 percent of people with chronic health conditions stop their medication         within six months

•    Up to 50 percent of medications are not taken as prescribed

•    No more than 30 percent of patients quit smoking when their provider         requests it, including those with lung conditions

•    Failure to follow prescriptions results in approximately 125,000 deaths each         year and up to 10 percent of all hospitalizations

•    Americans’ failure to abide by medication prescriptions costs them between         $100 billion and $289 billion a year

Sources: National Institutes of Health, Annals of Internal Medicine

Potential solutions

•    Educate and support the patient with phone calls, mailings and even video         conferences, especially for those with high cholesterol, high blood pressure and         heart conditions

•    Give doctors, pharmacists, etc., access to compliance information; if they know a patient has a history of not taking medication properly, they can try to intervene

•    Improve case management and coordinated care – appoint a pharmacist,         doctor, nurse or other health professional to keep an eye on a patient’s care

•    Make drugs more affordable – cut copays or expand prescription coverage.

Source: Annals of Internal Medicine