The Ultimate Patient Advocate

Posting my piece written for Sermo, as a guest blogger on the Sermo Blog, April 13, 2015. Click on the link here (The Ultimate Patient Advocate)to see the original post. 

Adding the quotes to set the tone, though, as I usually do. The graphic is also my own photography, as with all of the pictures on this blog. Enjoy!

 

“Only one rule in medical ethics need concern you — that action on your part which best conserves the interests of your patient.”Dr. Martin H. Fischer, German-American Physician and Author

“A physician shall, while caring for a patient, regard responsibility to the patient as paramount.”Principles of Medical Ethics, American Medical Association

“I pledge to pursue the practice of surgery with honesty and to place the welfare and the rights of my patient above all else.”Fellowship Pledge, The American College of Surgeons

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Laurel, North Andover, MA

Advocating for patients is a core value in medicine, in patient care. Our legacy as patient advocates dates back to Hippocrates in 500 B.C.E., codified in the oath and teachings that have provided the moral and ethical foundation on which the profession has been built. Even the Code of Conduct for the American College of Surgeons includes as its first principle, “Serve as effective advocates of our patients’ needs.”

Physicians fundamentally care for patients, their families, our communities. We advocate on the small, individual scale for each patient, and we advocate on the large scale for the entire population of patients and society.

The physician is the ultimate patient advocate.

The entire purpose of my profession is to learn about humans—their biology and chemistry, their function in health, and dysfunction in illness and injury. We strive to understand the impact of health or illness and injury on the psyche and on social interactions. To learn about and discover treatments and interventions, and to provide compassion and comfort in applying them. To educate both patients and our society in order to prevent illness and injury, promote health. We are called to speak truth to power in order to accomplish these goals.

The foundation of all this is the relationship and trust between the physician and the patient. Central to this relationship, that trust is the role of the physicians as advocates for their patients.

But now the position of “Patient Advocate” has become ubiquitous among hospitals, insurance companies, and health systems. A Patient Advocate is a (lay) person/entity whose primary role is to protect the patient and their interests, but also to field complaints, advocate on behalf of the patient/family, and even go so far as to assist in decision-making regarding the treatment plan or course of care. They are supposed to help navigate the often complex and confusing healthcare system, and the interactions with doctors, hospitals and insurance companies.

Patient advocacy seems a noble pursuit, and often much needed. Patients and their families are distressed and vulnerable, even in good health; add illness, and the ability to navigate the system and the decision-making can be daunting if not impossible.

All well and good, but I wonder why there is this pressing need for an entire different profession, an additional layer, another buffer between the patient and the physician? Has the core principle of advocacy changed in my profession? Have we abdicated our responsibility, or is it something else? If it has not changed, if we have not abandoned our principles, what is it perceived as lacking?

As Voltaire (or Peter Parker/Spiderman’s Uncle Ben) says, “With great power comes great responsibility.” The powerful responsibility physicians have for the care of their patients remains, but the trust on which it is based has eroded. The bond between physician and patient — and between the medical profession and society — has become strained.

Individual patients, the general public, and the government have all become increasingly wary of physicians. Considerable effort and expense is employed to rein in the perceived power and control wielded by physicians, implying that there is little trust in the ethics, oaths, and codes that we have set for ourselves. Hospitals, healthcare organizations, insurance companies, and various branches of government and regulatory agencies, as well as licensing boards and health departments (not to mention lawyers) have bit by bit surrounded physicians and buried them under mountains of law and regulation, benchmarks and measures and protocols.

Health systems and insurance companies increasingly dehumanize physicians, treating the highly skilled and highly trained professionals like pawns on a chess board, faceless and interchangeable. Physicians drop on and off of “preferred provider” lists in arbitrary and capricious fashion, destroying any relationship and continuity built with the patient. Doctors are presented as interchangeable.

Worse, at times it seems that these groups are driving a wedge in the physician-patient relationship. As a consequence, patient trust and confidence is shaken. It is not much of a leap for the relationship to be framed then as adversarial rather than cooperative. If a doctor is no longer seen as the patient advocate, then of course the void must be filled.

But Patient Advocates generally haven’t the medical training or expertise. They may be also beholden to the system or entity that employs them. The most common and available advocates are generally working for a hospital or insurance company, whose priorities may not entirely align with patient and physician. This is problematic, of course, because it is often the hospital or insurance company the physician must stand up to on behalf of her patient.

It is imperative that physicians continue to shape our evolving healthcare system and promote that which preserves and protects our relationship with our patients. We must insist that we not only take a seat at the table among “stakeholders” in the healthcare system, but show that we are the best and more uniquely qualified to lead the efforts. We must again claim that space between patient and physician and remind not just our patients, but all others that indeed we are their advocates. The physician who fails to serve as an advocate for their patient also fails to serve as a physician to that patient. We must fight for the time we need, fight against the distractions, shore up the trust that has been strained so mightily.

There is nothing in the description of a patient advocate that isn’t already part of what we as physicians commit to do for our patients. We are, therefore, the first and the last patient advocate, their most effective advocate, the ultimate patient advocate.

I advocate for physicians to continue to claim the time and space to be effective advocates for our patients; and to embrace this responsibility, and not abdicate it to others. Taking the lead to work with, but not be replaced by patient advocates.

Muted

Smitty greets Sully as they meet to head to work, “Hey there, Sully! How’s your wife?” Sully answers, “Oh, geez. She’s up in bed with laryngitis.” Then Smitty says, “Laryngitis?! That damned Greek!”

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First cone of the season, West Boxford, MA

As you may have guessed, I am nursing a case of laryngitis, my voice muted and strained. This time, it has not stopped me from attending to my work responsibilities or other activities. It has required some adjustments though, as I squeak and growl and cough and sputter, my voice robbed of inflection and tone, and even volume control. It is an irony to have to strain my voice to repeat myself because of my strained voice.

I have had more severe laryngitis twice, one time a couple of months ago, another time several years ago. These were so bad, my voice so completely silenced, that I had to change both my operative and office schedules, not just to recover, but because it made my job impossible. We wear masks in the operating room which obscure our expressions and hide our mouths, muffling our voices just a bit; it can be difficult to hear and be heard even with functioning vocal cords. It is impossible if you can’t even manage a whisper.

It is true that learning to (or being forced to) mute your own words and listen more to patients — and colleagues and staff — is not a bad exercise in attention and communication. But in day-to-day practice, there is an expectation of bi-directional conversation, two-way discourse. The doctor is expected to voice opinion, advice, orders. That cannot happen while mute.

In medicine and healthcare we often think about, and talk about, physician-patient communication, but in the abstract. We consider principles and philosophies, we argue the the importance and the need to protect and enhance physician-patient communication. We frame it as a component of the physician-patient relationship, or patient empowerment, or patient-centered care, or patient education, or even informed consent. It will probably be an important piece of the new precision, personalized medicine buzz. Physician-patient communication is the foundation for much in healthcare, whether new hot topics and ideas, or old traditions and approaches.

There are lots of little things we tend to overlook though, in these lofty discussions, that turn out to be no less important when considering the big picture of physician-patient communication, and the big important overarching principles and approaches. Think for a minute about the old saying about trying to sleep with a mosquito in the room, and you will start to understand about small things having great importance, great impact.

These are the small, day-to-day, practical and concrete challenges and barriers to communication, to care. The little things that will tank the most cutting edge and sophisticated solutions and approaches. They could be episodic, like a surgeon with laryngitis, a power failure, downed cell tower or phone line, crashed computer network or server. Or they could be more insidious, lurking continuously in the background, like scheduling protocols that cut time short, technology mismatch when the patient may only have an analog phone, or no phone at all, outdated computer software or no computer at all, no car or transportation, no family. Even language itself may be a barrier rather than a bridge, whether a function of nationality, education, or med-speak jargon.

These little things are potent, despite being small; they are common, nearly ubiquitous. If not accounted for, and certainly if not acknowledged, they may well allow our new solutions to enhance rather than alleviate the disparities and vulnerabilities among those who are most susceptible. We must keep them in mind as we debate our philosophies and principles, as we race towards new technologies and systems.

Disrupting and hacking the systems are popular concepts that are catching our attention and imagination. But if we aren’t careful, the disruption we seek will not be the disruption we get. Remember unintended consequences. Remember that if we aren’t mindful to craft solutions that will include and work for the most challenged and vulnerable among us, the solutions will not likely work well for any of us, and the whole enterprise crashes down, grinds to a halt.

Just like my schedule on the day I am mute from laryngitis.

A Matter of Faith

“Have a little Faith in Me” – Have a Little Faith in Me, John Hiatt

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Russian painted wooden Easter eggs

Spring ushers in major holidays in many faiths and religions. Western Easter has just passed, we are in the midst of Passover, and coming to the close of Holy Week with Good Friday for Eastern Orthodox Christians, making final preparations for their own Easter celebration.

The rites of spring and the vernal equinox, new life and rebirth are springtime themes and touchstones across many cultures. Faith is important to many people and across many cultures and religions. I would assert faith is even important to atheists and agnostics, and those without a formal religious tradition.

Faith is important in medicine, too. Continue reading

Thoughts on Doctor’s Day

“Clowns to the left of me, jokers to the right. Here I am, stuck in the middle with you!” – Stuck in the Middle with You, Steeler’s Wheel

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Daffodil between the rocks, Spring 2014, North Andover, MA

Today is Doctor’s Day, established to take a moment to recognize and honor the work and contributions of doctors.

The first thing I read today was a message from current Massachusetts Medical Society President, Dr. Richard Pieters, who in speaking about Doctor’s Day reminds us all that the focus of the day is not just physicians, but the physician-patient relationship. The physicians of the Massachusetts Medical Society have declared that this Doctor’s Day we recognize “the basic principles that the doctor-patient relationship is confidential and sacrosanct.”

In his piece, which discusses this in the context of gag laws preventing physicians from asking about gun ownership and gun safety in the home, he emphasizes the efforts of physicians to focus on the patients and have unencumbered and protected conversations. It is impotent to protect both directions of these conversations—patient to physician as well as physician to patient. He further stresses the importance, and danger, of government laws, rules, and regulations that would insert themselves between physician and patient, silencing physicians or compelling them to include specific proscribed content.

I could not agree more. I would in fact go even further. Continue reading

Is There a Provider in the House?

“I said Doctor, Doctor, Mr. M.D. – Can you tell me what’s ailing me?” – Good Lovin’, The Grateful Dead

“I’m a doctor, not a mechanic.” – Dr. Leonard “Bones” McCoy, “Star Trek”

“I’m not a doctor, but I play one on TV. ” – Chris Robinson/Dr. Rick Webber of  “General Hospital”

 

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Ceiling, Bellagio Hotel Lobby

I enjoyed an email exchange with a couple of long-distance friends the other day, Gina (an author and journalist) and Eric (a computer/IT professional), prompted by the follow-up questionnaire Gina received after her recent doctor visit and procedure. Throughout the form, it asked her to evaluate the various aspects of her interaction with her provider. 

This struck her as odd and funny, and we engaged in a generally humorous exchange. A couple of really serious points were made as well.

First, though, it made me think of a new game, playing around with words. Take any fictional character from books, film, television; any famous poetry, literary passage, or song lyric; any famous person or historical figure that contains or references the title “doctor” or “physician”, and substitute “practitioner” or “provider.” Dr. Who, Dr. Strangelove, Dr. Zhivago. Christ the Physician. Dr. Spock (both of them), Dr. Koop. Dr. Gawande. “Doctor, my eyes…”, “Doctor, Doctor, tell me the news…” , “Is there a doctor in the house?” You get the idea. Stilted, clumsy, and the result is often strange if not creepy. We can play the same game with references to the word “patient”, substituting “customer” or “client”.

But wait, we already play that game, it is a daily interaction, and we are getting shockingly accustomed to it. Continue reading

Context is Everything: Communicating Meaning in Medicine

“I do not think that word means what you think it means.” -Inigo Montoya, “The Princess Bride”

“Stick to Facts, sir! … In this life, we want nothing but Facts, sir: nothing but Facts!” Charles Dickens, Hard Times

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Snowy shrubs, Massachusetts Winter

“Information without context isn’t transparency” flashed across my Twitter feed. So now I am thinking about context, and communicating context, in medical care.

This quote, from Heather Pierce, JD, MPH, Director of Science Policy and Regulatory Counsel for the Association of American Medical Colleges, was made in the context of a discussion of  The Sunshine Act. The Sunshine Act refers to the law and regulation mandating public disclosure of financial payments from for-profit companies to physicians. These payments are published without context regarding the relationship of the physician to the company or industry, if there is conflict-of-interest, or if they exert any influence. Payments or items/services valued above $50 are all included, to my understanding. They may be for a textbook, lunch for the office, a junket or meeting, or research. None of this context is specified.

The concept of information without context is itself extraordinarily important, aside from the controversy and opinions swirling around the Sunshine Act. Transparency is the buzzword in many aspects of life these days, from politics and policy, to commerce, to medicine. I will focus on some aspects of context in medicine.

It is ironic, then, that I am taking a quote about context out of context, to write about the importance of context.

 There are to me two main areas in medical care where context is important, and both are contained in the exchange between patient and physician. There is the context the patient provides to us, and there is the context we physicians provide back to the patient. All of this context depends on communication.

 The communication from patient to physician is crucial, even critical, in sorting out the details of symptoms and complaints. This history provides the context and framework for appropriate testing, and accurate diagnosis. Too often too many forces work against revealing this context. Time constraints on the patient visit, the crush and chaos of an emergency setting, the limitations of documentation (especially electronic) stripping nuance and detail from the record. Without context, the testing (labs, imaging) are no longer accurately aimed like a bullet, but becomes instead a shotgun blast, a scattered approach. The patient needs the time and space, and our interest and attention, to understand this context.

 Likewise, physicians provide context back to the patients. The context for the tests and results, the diagnosis, what it means. The meaning as it stands alone, and as it fits in the patient’s own context, which we mirror back to them. The transparency of sharing results with patients is important, but here, too, the context is important. Stakes are too high, miscommunication too easy a trap, misunderstanding and denial too common. Lab test, x-ray report, biopsy result all need to be communicated with attention to context. They are not stand-alone, black and white. It is my role as physician to help the patient understand, help formulate a plan, and that also means providing an interpretation (context again) for the results, helping the pieces of the puzzle fall together.

I am therefore not a fan of systems, whether laboratory reports or radiology results, providing results directly to patients, bypassing the ordering physician. The Skeptical Scalpel outlines the issue well, as he ponders, “Should radiologists tell patients their test results?” It is like the whole direct-to-consumer advertising mentality. And again, I believe it  all boils down to context. If we need to expedite getting the results to patients, then improve the communication between providers, between specialists, between departments. Permit the context to be shared and clarified in this space, too. Modify, alter, fix the system so that it facilitates rather than hinders these communications; transform the system so that it permits a place and space for the timely communication back to patients with room for context, and plan.

This is the space where healing and compassion dwell, where trust is built, where the bond between physician and patient is forged. There are too many forces inserting themselves into this space, where they do not belong. This is the space where meaningful and open communication happens. Where the patient and the physician become the team, not opponents. This is context. Most importantly, this is transparency. Isn’t this what we were after all along?

In a Blink: ‘The Diagnosis Is Cancer’

“Life changes in the instant. The ordinary instant.” -Joan Didion

“Maybe that’s what life is…a wink of the eye and winking stars.” -Jack Kerouac

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Sunrise, Plum Island/Newbury, Massachusetts (November 2011)

Life changes in a blink. A misstep, an accident, being in the wrong place at the wrong time. The seconds and even microseconds seem an eternity. Nothing will ever be the same from that moment. Everything that happens in that instant, flash, blink,  changes the whole world, your whole world, and you can never go back.

A few weeks ago I was in an automobile accident, my friend was driving. It was on a highway, at speed, involving two other cars besides ours. Amazingly, no one was hurt (I assume this, since the culprit who caused the wreck kept right on going and never stopped). The cars were damaged, my friend’s car took the worst of it. It is in the shop so that it can be fixed up, as good as new. All of this happened in a blink, an instant. Too fast to even register what was happening. Our plans for the day were shattered. My friend will be dealing with this for months, by the time all the repairs are done, bills paid, insurance adjusted. But cars can be fixed, as good as new. This is what got me thinking.

Injury, accidents and trauma, illness represent a nearly universal experience. No one is spared, Continue reading

The Entourage: Between Surgeon and Patient

“Two’s company, Three’s a crowd.”  -popular saying

“But I always say:  One’s company, Two’s a crowd, and Three’s a party!”  –Andy Warhol

 

100_3568 - Version 2As a surgeon, my patients generally know they are seeing me for a problem, and that problem may require surgery. I am sensitive to the fact that this is a very big deal to them, often the first time they have ever seen a surgeon. Even if they have had surgery before, that only means that they may have some idea as to what the process may entail. Patients are nervous, perhaps frightened, they have questions. They know they will have more questions and concerns as the visit and process moves on. There are big and important decisions to be made.

Many patients therefore arrive to their first visit with an entourage, one or more family members or friends, companions who are there to lend emotional support for this stressful visit. The additional ears to make sure the explanations and descriptions are heard correctly and understood, the extra minds to pose questions the patient may have forgotten or not thought pertinent to ask. This is laudable, advisable. I encourage patients to have someone with them for just these things, to help the patient.

So here is why the first thing I do when I meet a new patient is to excuse the entourage, and send them right back to the waiting room. Continue reading

Storytelling: The Story Unravels in the EMR

“Storytelling is important. Part of human continuity.” –  Robert Redford

 

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(Storytelling, Part Two) The history and physical, the progress notes, the testing are combined in the medical record, weaving these threads together to form the narrative that is the story of the patient. The electronic medical record (EMR) represents a threat to that, and the story unravels.

It is no wonder, and should come as no surprise, that many doctors in general, and myself in particular, buck and chafe with the imposition of  the EMR that is nearly ubiquitous in hospitals, and physician offices and clinics.

Most systems are unwieldy and do not integrate well into the work flow, especially in an office or clinic setting. So either the physician continues on with the old processes, saving the charting for later after the completion of the visit (which has some problems with recall, workflow, and time management, as you might imagine), or the physician’s nose is buried in the laptop or tablet device, focused on clicking the right boxes, the right templates.

In both circumstances, the narrative breaks down.

The heart of this narrative is derived from the communication between the physician and the patient, both verbal and non-verbal. This builds trust, the foundation of the physician-patient relationship, trust that is built by the attention to their story, taking the time to listen. Maintaining eye contact, reading body language. For all too many patients, this may be one of the only times and places in their life where someone does, in fact, listen to what they have to say. When you can’t pay attention because of the computer in front of you, or because you can’t take the time because you have to get to the chart and the next patient (or both), the communication breaks down, the bond begins to strain–if you were even able to establish a bond in the first place in these circumstances.

Make no mistake, patients notice this. They don’t like it, either. Continue reading

Storytelling: The Physician As Writer

“Every day, I write the book…”  Elvis Costello

 

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I write every day, but somehow have not considered myself a Writer. I am a physician, a surgeon. I take care of patients. I operate, I admit patients to the hospital, I consult. I order tests, labs, images; I do physical examinations, I take medical histories. And I write it down.

I gather all of this information, and more than simply recording the list of symptoms, physical findings, and results, I convey the narrative of what has happened, what is going on, the interpretation, the plan. So, maybe I am a writer. A biographer, of sorts, telling the story of every patient I see, at least as it relates to their health or illness. Synthesizing the data, the history, the laboratory and test results, the imaging–into a narrative that not only explains how and why the patient got here, but also what I think is going on (and what is not going on), what it means, and what we are going to do about it (whether that means fixing it or figuring out what else we need to do). All of this are chapters in the story I am telling, to communicate the information, my thoughts and reasoning, my plan to my colleagues. The original, and still primary, reason for the patient chart (whether electronic or paper), the medical record is Telling A Story.

This special “biography”, the history, is an extremely important piece of this story, of caring for patients. All of the testing in the world–labs and imaging and what have you–are really only in support of, augmenting, what is learned in the history, and can not and do not replace it. My wise professors and teaching attendings held to this, and demonstrated it; it has been my experience throughout my own practice and career. They maintained that about 90% of what was really happening with the patient could be ascertained from a skilled, well-done history.

This takes time to do, time to master. And although this percentage may be a bit inflated, so as to impress the young minds under their tutelage, it does not diminish the importance. Continue reading