Guest Post: My Total Transparency Manifesto

In this guest post, I am honored to host Dr. Elizabeth (Liz) Phillips, a resident physician in emergency medicine at George Washington University. She wrote this statement as part of her Total Transparency Manifesto on Who’s My Doctor. It was so moving that I asked her for permission to post it here. Thank you, Liz, for your inspiration and your humanity.

I am a physician and therefore a servant of others but I am also a human being. I believe in the importance of humanity in medicine and the danger of losing our capacity to have valuable and true human connections. Undeterred by the warnings from my mother who is a nurse and therefore all too familiar with the dysfunction of the health care system, I pursued a career in medicine because I consider it to be one of the most privileged professions. Not because of the academic prestige or the potential reimbursement but for the corporal, intense and deeply personal relationships that physicians have with patients.

My first real encounter with the ugly side of medicine was in college when I volunteered in a nursing home. Despite my attempts to mentally prepare myself for visits at the Erwin Gardens, every week I would find myself aghast of the poorly lit rooms, dirty floors and slight odor of urine that filled the air. Mrs. J was a Medicaid patient with little to no control over the quality of her care. Three times a week she would awake at 4 a.m. to be taken to the hospital for dialysis only to return hours later, face sunken and stomach growling with no one who really cared. My visits with Mrs. J were part of a service-in-learning course on Death and Dying but the interactions that I experienced at her nursing home exposed me to much more than the dubious and gradual process of dying. It was apparent to me that my spirited conversations with Mrs. J were a weak anesthetic to the constant sting of the poor quality of life, depression and lack of options that plagued her mind.

Patients like Mrs. J have been salient examples of the complex ethical dilemmas that confront physicians and our health care system every day. My experiences with her put a human face on the issues surrounding end of life care, insurance, medical costs, quality of life and health disparities. Mrs. J poignantly reminded me that physicians are demanded to work in an environment that ethically challenges them both as professionals and individuals. The emergency room is a place where many of these issues are highlighted as physicians struggle to care for patients who are underserved or unable access care efficiently through other venues. 

My philosophy of practice is deeply impacted by my clinical and educational background. I completed a masters in bioethics in medical school because it was essential for me to practice medicine with a constant awareness of patients as individuals and not illnesses. I am participating in the Who’s My Doctor campaign because it is important that patients know that I accept no money from drug companies or device companies. I am not making money from ordering more tests or pushing you as a patient to make certain medical decisions. I understand that I am a stranger with whom your share the most personal information and I consider this a privilege.

I see the need for physicians to serve as patient advocates. I have also witnessed the increasing demand for considerate and professional physicians whose integrity and dedication can withstand the turbulent changes that continue to confront health care in this country and around the world. I hope to utilize my unique background by serving as a competent and skilled practicing physician who also participates in changing policy to make our health care system one that better serves patients and reinvigorates our focus on comprehensive, preventive and compassionate care. Mrs. J would expect nothing less than my most valiant attempt to ameliorate the health care system that failed her in so many ways. I am constantly striving to make her proud.

Please join us in the joint patient-provider partnership for transparency.

Featured in British Medical Journal's Editor's Choice!

British Medical Journal has just featured Who’s My Doctor in their Editor’s Choice!

“As a physician in Washington, DC, [Dr. Wen] has become increasingly troubled by conflicts of interest that are apparent to doctors but hidden from patients. She sees full transparency as part of “a renewed professionalism.” This should extend beyond payments from industry, she says; doctors should also make clear to patients how they are reimbursed. Payment structures such as fees for services (or, in the UK, the Quality and Outcomes Framework) incentivise doctors to order tests or to provide specific treatments. Patients need to be able to ask whether tests and treatments are being prescribed because they are in their best interests or because they benefit the doctor, she says….

…Not everyone will welcome such moves with open arms. Wen reports extreme hostility to her initiative from some doctors [see link to article], and McCartney and colleagues acknowledge that being required to declare sources of income will concern some. But declarations of interest are now standard practice for publication in medical journals. The same should be true for our dealings with patients.”

Please join us in our campaign for transparency.

What I Learned—1 Year After When Doctors Don’t Listen

One year ago today, my book, When Doctors Don’t Listen: How to Avoid Misdiagnoses and Unnecessary Tests, was published. My goal in this last year has been to travel around the country and talk about the book and its message of advocating to improve your health. I planned a 48-city itinerary where I’d crisscross the U.S. from Massachusetts to California and back. I’d speak at bookstores, libraries, nursing homes, universities, and community centers.

What I didn’t anticipate was that this “speaking tour” would turn into a “listening tour”. 

From Boston to Los Angeles to Lexington to Cincinnati, people told me about their experiences with healthcare. Some, like 62-year old Annie from San Francisco, thought of themselves to be “e-patients”, or empowered patients. “I have a rare rheumatological illness that very few doctors have encountered,” she told me. “I bring research articles and educate my doctors.”

Others avoid doctors, like Janet, a 48-year woman from St. Louis who believes in “prevention, prevention, and prevention.” However, like many others I met, she sees healthcare providers nearly every week because she’s a caregiver to her elderly parents and her three children.

Over 2,000 people shared with me their frustrations with doctors, insurance companies, hospitals, and the healthcare system. I listened and learned.

Here are 10 themes that emerged: 

People don’t know that they have options, especially when it comes to saying no. They are used to doctors telling them what they need; they are surprised when I mentioned that patients always have a choice to NOT get a test or NOT take medications. Few interventions are so emergent that patients need to obtain them immediately. Watching and waiting, discussing it further with the doctor, and obtaining a second opinion are reasonable alternative. 

People want to please their doctors. In general, people like their doctors. Many feel they have to do what the doctor wants out of fear of displeasing them. “I lie and say I take medications I can’t afford,” 75-year Tony from San Antonio said. Others expressed their need for doctors to support their decisions. “Give me real choices and mean it,” says 38-year old Teresa. “Don’t judge me as being noncompliant just because I have a different value system.” 

People don’t want more care—they want right care. People recognize the harms of overtesting and overtreatment, and know that more care isn’t always better. They know to be wary of industries with ulterior motives. “Drug companies and insurance companies aren’t operating out of the goodness of their hearts,” says Joseph, a 55-year from Providence. “There’s a lot of money to be made money from healthcare.” They also fear rationing, and caution that less isn’t more either. What they want is the right care, without personal or commercial interests getting in the way. 

People don’t expect perfection, but they demand transparency. They know that doctors aren’t omniscient; they just want them to share what they know. Uncertainty is fine, as long as they are told the truth. Also, people accept that doctors are human and that medical errors occur. They don’t aim for retribution, but they do want disclosure of the mistake and to know that the doctor is committed to addressing it. 

People want more information to choose doctors and hospitals. “It’s disgraceful that I can find all types of information on choosing a coffee shop but I know next to nothing about my doctor,” 35-year old Jenny from Cincinnati says. People want to know about their doctors, not only their credentials, but also any financial conflicts of interests, their values, and who they are. 

People know that hospitals aren’t hotels. They don’t expect valet parking and 3-course meals, but they do want to be treated with respect. If they’re cold, they want a blanket. If they’re thirsty, they want some water. Without compassion and addressing basic human needs, marble staircases and fancy MRIs are worthless. The same goes for doctors’ offices. Forget the fancy carpeting, but find staff who treat people with humanity and dignity. 

People will wait if they get what they need. The dogma based on patient satisfaction survey results is that higher wait times leads to unhappy patients. However, the people I spoke with are unhappy not because they had to wait, but because they did not get what they expected despite the wait. “I waited two hours, and the doctor just spent five minutes with me,” said 49-year Sophie from Plymouth. Studies show that patients are interrupted in about 12 seconds; it’s no wonder people feel ignored and not listened to! 

People aren’t lazy when it comes to their health, and don’t always want the quick fix. Most people don’t want to go to their doctor at all, and prefer to find ways to improve their lifestyle and prevent disease. The popularity of diet and fitness books is case in point. Many do not want “the easy way out” in the form of drugs or surgery, but would rather discuss fitness, diet, and use of alternative therapies with their doctor. “It’s my doctor who doesn’t want to discuss these therapies with me,” says 22-year old Sandra.

With Dr. Jocelyn Elders and advocate Patty Skolnik

People know that the current system is unsustainable. No matter the politics, people saw the healthcare system as being broken, and all of them as victims—and future change agents. “It’s just like the environment: there are finite resources,” I heard over and over. Since “free” and “cheap” weren’t synonymous with good care, people are willing to pay out of pocket for better value (as long as it doesn’t bankrupt their family). They are willing to share in the cost to society, because they recognize they already are.

People crave connection and caring. They want face-to-face interaction with “their” doctor. They want to be listened to and heard. Knowing their medical history is only the start; they also want their doctors to understand and connect with them emotionally, physically, and spiritually. This requires a sustained relationship; people do not want to go to “minute clinics” or use smartphone apps to access their doctor, but rather long for a long-standing relationship with an accessible, trustworthy provider.

By no means is this list meant to be exhaustive or intended to represent every one of the individuals I met. The very nature of healthcare is that it is personal and individual. These findings represent the thoughts and wishes of a broad spectrum of people across the U.S. They challenge conventional wisdom when it comes to what is needed in healthcare. For example, the rise of urgent-care centers and smartphone apps should be seen as failure, not progress. Similarly, reducing wait times or adding fancy office furniture is not the fix for patient dissatisfaction.

Reform proposals tend to target policy changes that become mired in rhetoric and statistics. What people want is more basic, and more achievable. Doctors need to be transparency and honest with patients. They need to move away sick care towards healthcare. 

In the words of the great humanist and cardiologist Dr. Bernard Lown, we need to “do as much as possible for the patient, as little as possible to the patient.” Medical students need to learn shared decision-making and integrated care. Patients—people—should be part of every healthcare debate. Ultimately, we must restore medicine to being a caring partnership that prioritizes basic human dignity and respect. 

My listening tour continues. Please share your thoughts below. I look forward to listening and learning.

Seeking Your Help to Call for Total Transparency in Medical Care

I received many responses to my NPR article on Who’s My Doctor. Many have asked what they can do. Here is a joint provider-patient petition to call for honesty and transparency in medical care. Your thoughts? If you agree, please sign here!
 

We are patients and providers who believe that doctors need to be honest, transparent, and accountable.

When we go to the doctor, we are vulnerable and need to trust that our doctors have our best interests at heart.

Doctors have to tell each other at conferences if they are paid by drug companies or medical device companies; they should also tell their patients about these potential conflicts of interest. They need to be open with patients if their employers pay them more to do more, or to do less. These incentives directly affect patient care.

We believe that informed consent isn't complete without doctors' disclosure of how their financial incentives align with their treatment recommendations.

We also believe that patients have a right to know our doctors’ views on healthcare issues such as preventive health, integrative medicine, shared decision-making, end-of-life care, and women’s health. Such beliefs can have an important impact on the provider-patient relationship, and patients need ready access to this information to be empowered to choose the right doctor for us.

Those of us who are doctors, nurses, healthcare providers, and providers-in-training affirm through Who’s My Doctor and this Total Transparency Manifesto that our patients' best interests are our best interests. We know that patients come to us at a time of vulnerability, so we will be vulnerable too. This is a partnership; we are in this together.

With this pledge, we are coming together as patients, doctors, and healthcare providers to rebuild our healthcare system into one that upholds professionalism, prioritizes patient values, and respects human dignity.