Can You Trust Your Doc? Doctors Who Are Cancer Survivors Outline Steps to Getting Trust Back

By Kelly Michelson, M.D. M.P.H. and Mita Sanghavi Goel, M.D.

As a criminal investigation deepens around the involvement of a Minneapolis doctor’s medical treatment of Prince in the hours and weeks before the iconic star’s death, it leaves many wondering. Did Prince trust this doctor, or any of his doctors? Should we trust our own doctors?

For many, unfortunately, that answer lately has been no.

The importance of trust in healthcare is unique, as it can mean life and death, of course, but also quality of life.

Certainly the impact and importance of trust is evident in all human endeavors and across all disciplines. But trust in consumer health ranks among the lowest in all industry sectors. Measured at 60 percent by a new study, it is declining and below trust levels in industries including food and beverage, automotive, entertainment and pharmaceuticals.

Compounding the level of mistrust is a new BMJ study confirming everyone’s darkest fears: medical errors are the third leading cause of death in this country.

In this era of distrust toward physicians and the healthcare system, patients may turn to other sources for information and guidance.

For example, celebrities having prophylactic mastectomies garners attention, and may lead some women to choose a painful and aggressive surgery unnecessarily. The number of women in this country having surgery to remove a breast unaffected by cancer as a preventive measure has tripled in the last decade. More than 12 percent of all women diagnosed with breast cancer are now undergoing contralateral prophylactic mastectomy, even though doctor recommendations discourage such elective surgery for most women.

This is just one example, but these avoidable, painful surgeries can cost up to $55,000. That is a steep price for a procedure not proven to be more cost effective than regular screening in most cases. To be sure, when it comes to choosing bilateral mastectomy, for many women the emotional price of repeated screening drives their decision making.

And it is true that some celebrity stories impact positive change in healthcare choices, like the increase in screening for colon cancer dubbed the “Katie Couric Effect.” But other times, celebrity influence can lead patients to make misguided decisions.

As doctors, we hope that patients would value medical recommendations over celebrities’ advice or influence. But there are a number of other influences at play in these decisions.

Our patients and their families entrust us with their lives and the lives of their loved ones in either the pediatric intensive care unit or the adult outpatient clinic.

This personal search for a trusted opinion about medical information is something we experience every time we open an email from a patient who has heard the bad news, “You have breast cancer.”

As breast cancer survivors, both of us know how important it is for patients to trust their doctors when making healthcare decisions. After both of us were separately diagnosed with breast cancer, each of us sought medical and personal advice from peers. We had much to learn from others who had already walked the path.

Like all patients who receive this diagnosis, we struggled with telling our children, determining which doctors to see, and deciding whether or not to have a contralateral prophylactic mastectomy.

Certainly, neither of us made medical decisions based solely on cost or input from peers. Fortunately, we both felt a great deal of trust in our surgeons, largely as a function of our having close relationships within the medical community.

But as patients, trust informed much of the way we filtered and weighed information. Trust also informed our choices about our medical care.

A recent study from researchers at institutions including Yale University School of Public Health, found that when patients select physicians, viewing comments from other patients about a physician can carry more weight than more standardized measures of patient satisfaction and physician quality. In other words, peer comments carry great influence.

So why is it so difficult for patients to trust physicians? Living on both sides of that partnership, we feel we have a vantage point of increased clarity.

Perhaps one factor in the erosion of trust includes recent media offerings such as Dr. Erika Schwartz’s critical and criticized book, Don’t Let Your Doctor Kill You: How to Beat Physician Arrogance, Corporate Greed and a Broken System; a recent Consumer Reports issue, “What You Don’t Know About Your Doctor Could Hurt You,” or “The Most Dangerous States to Get Sick in Might Surprise You.”

Oddly, this erosion of trust in healthcare arises at a time when positive advancements in medicine and research have changed the way we live and how long we live.

Someone born in the U.S. today is expected to live almost a decade longer than they might have 50 years ago. Age-adjusted death rates declined significantly for many of the leading causes of death. Deaths from childhood and adolescent cancer have decreased more than 50 percent since 1975.

And yet, in the last several decades we have seen a number of therapies at one time considered beneficial, prove to be catastrophic. Once thought to help pregnant women sleep, thalidomide was eventually found to cause serious birth defects. More recently hormone replacement therapy for women was recommended to mitigate chronic disease. Now hormone replacement therapy is recommended in only limited circumstances.

Such instances create cynicism and engender mistrust. And other technological advancements intended to improve consumer healthcare may have inadvertently endangered trust.

Intended to improve efficiency, clinic visits often last only 10–15 minutes. The electronic health record encourages many physicians to spend part (or even most) of that time looking at their computers. Many times people can’t even chose which doctor they see because of limitations from insurance companies.

Still it is in the sacred space between the patient and physician that doctors can focus attention in order to enhance trust by practicing communication techniques that place patients’ needs first.

In a recent study in the journal, Pscyho-Oncology, researchers found how physicians speak with their patients matters. According to a survey of patients in China newly diagnosed with cancer, expressing emotional support for the patient, providing information at an appropriate pace, and discussing multiple treatment options boosted trust.

Patient-centered communication requires physicians to maintain eye contact, encourage questions, and elicit patient concerns. These methods enable doctors to better understand the patient and direct care to issues that meet their needs.

Physicians can resist looking at the computer screen, a habit that may require important innovations, such as having scribes input information into the computer.

Finally, physicians can ask a lot of open questions. These are not typical questions such as, “What medicines do you take?” Rather, doctors can ask questions that get to the heart of what the patient needs: “What is most important to you?” “What are your goals?” “What are your concerns?”

Certainly there are questions the doctor needs to ask that patients may find difficult or cause discomfort answering. There are also difficult responses a doctor must deliver and news that no one wants to hear.

Of course the doctor-patient relationship is reciprocal. Patients can take responsibility as well. As doctors, we encourage patients to speak up when they have questions, don’t understand, or simply don’t agree with the doctor.

Indeed, we do not believe that patients should blindly trust their physicians. Skepticism can be healthy and investigating all options is the best for everyone involved. We suggest patients seek web-based information from reputable medical sites such as UpToDate, Medscape or specialty sites such as The National Cancer Institute.

We recommend patients talk to peers, friends and others who have gone through a similar situation — as we both did. But then a patient can take all that information back to the doctor so she understands the factors important to her patient in making critical health choices.

There is no one path to health. And there is no one ingredient that can build trust, if it has been jeopardized or eradicated. We understand this from the roles of both patient and doctor. And whether we are famous or not, trust in a physician and in the system may enhance the journey for every patient. Trust can and must be earned.

Dr. Kelly Michelson is a physician, Associate Professor of Pediatrics and Director of the Center for Bioethics and Medical Humanities at Northwestern University’s Feinberg School of Medicine, and a Public Voices Fellow with The OpEd Project.

Dr. Mita Sanghavi Goel is a physician, Assistant Professor of Medicine at Northwestern University’s Feinberg School of Medicine, and a former Public Voices Fellow with The OpEd Project.

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