doctor-patient relationship

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West Nile Story: 400 Days In Hospital, A New View Of Health Care (And Life)

By Dr. Annie Brewster
Guest contributor

In August of 2012, Charlie Atkinson was bitten by a mosquito in the garden outside his home in Cambridge, Mass.

Charlie Atkinson, 78, at home, is still recovering from West Nile Virus. (Courtesy)

Charlie Atkinson, 78, at home, is still recovering from West Nile Virus. (Courtesy)

From that bite, against the odds, he contracted West Nile Virus. It nearly killed him.

Charlie was in a coma for more than a week, paralyzed in his left arm and right leg. He spent more than 400 days total in two hospitals. He is still recovering.

Before the fateful insect bite, Charlie, married, with four children and nine grandchildren, was incredibly active. He was an avid tennis player, a self-taught pianist, an educator and entrepreneur who started numerous companies. West Nile Virus changed that life.

I met Charlie, now 78, on a snowy December day at his home, now retrofitted with a wheelchair ramp and a stair lift. We spoke in the sunny dining room, which has been transformed into a bedroom, complete with a hospital bed and Charlie’s ventilator equipment (he has a tracheostomy and is on the ventilator at night). Charlie lay propped up on his pillows as we spoke, and his warm handshake and bright eyes made me feel right at home.

A self-described “Just Do It” guy, Charlie fought his way back from near death with amazing determination. He surpassed the predictions of the medical community and has continued to make progress: he can now get around with a roller walker and even take steps on his own with a cane.

But beyond his physical comeback, Charlie’s story is also about learning to be a smarter patient; questioning the conventional medical wisdom and seeking out health care providers who are truly compassionate.

Listen to Charlie here: 

West Nile Virus is an arthropod-borne virus (an arbovirus), most often spread by mosquitoes between the months of June and September. It has been found in 48 states (all but Hawaii and Alaska) and in the District of Columbia. It was first detected in North America in 1999 and has continued to spread since that time. In 2013, the CDC reported 2,374 cases and 114 deaths. Continue reading

Delicate Doctoring Moments: A Medical Error By Another Physician

(Alex E. Proimos/flickr)

(Alex E. Proimos/flickr)

What if you’re a doctor, and you discover one of your patients is the victim of another doctor’s mistake, say, a serious misdiagnosis or administration of the wrong drug?

What do you do?

It’s a delicate type of problem that’s rarely discussed, even while the whole question of how to better handle medical errors is gaining new attention and focus in hospitals and medical centers around the nation. (Many institutions are embracing a new “full disclosure” philosophy with more open communication, honesty and maybe even an apology when a medical error occurs, but these policies often take years to truly take hold.)

Dr. Jo Shapiro, chief of the Division of Otolaryngology and director of the Center for Professionalism and Peer Support at Brigham and Women’s Hospital, co-wrote an article in this week’s New England Journal of Medicine exploring the topic of how clinicians should talk to patients about a medical error caused by a colleague. In the piece, she touches on the institutional, cultural and emotional barriers to such open communication, and the challenges when one doctor feels, “This is not MY error.”

It’s important to think about this problem now, Dr. Shapiro writes, because medical care these days is often delivered by a team of clinicians across “multiple care settings.” She writes that much of the medical literature assumes that “the physician providing the disclosure also committed the error,” but that may not necessarily be the case. Here’s the hypothetical example at the top of Dr. Shapiro’s piece:

You are a young neurologist practicing in a small hospital. You admit a 55-year-old woman with hypertension and type 2 diabetes mellitus who had an embolic stroke at home. On reviewing the patient’s medical record, you notice that she appears to have been in atrial fibrillation during two electrocardiographic (ECG) tests during visits to the office of her primary care physician (PCP) for palpitations. Her PCP, an internist who provides many of your referrals, read both ECGs as normal and attributed her palpitations to “probable mitral-valve prolapse and anxiety.” The patient is currently in normal sinus rhythm. You show the internist the ECGs and express concern that they
indicate atrial fibrillation. He politely disagrees and says you are confused by noise from his old ECG machine. However, when you ask two cardiologists to look at the ECGs, both immediately say “A-fib.” The internist requests that you transfer the patient to his service.

I asked Dr. Shapiro a few questions — about the particular case she describes and the issue in general. Here, lightly edited and via email, are her responses.

In the hypothetical case of the neurologist in your piece, how does he or she speak up about the error, and also overcome the deep instinct to protect a colleague?

There is of course a strong pull toward loyalty that can lead one to not speak up.  We all have the sense that we are human and can make errors and we want to be treated respectfully by our colleagues.  But currently we understand that this loyalty should not stand in the way of transparency and compassion towards our patients.

So, should the first step be for the doctor who learns about the error to confront the mistake-making doctor? And if you do this, might you alienate this doctor forever?

Yes. Ideally one would contact the physician who had been previously caring for the patient so you could discuss your perspective and concerns with him/her.  Often, that physician might have a perfectly reasonable explanation regarding the care.  If not, it is still important to have the conversation so that two things can happen:  the MD learns from the error and the MD has the opportunity to discuss this with the patient and to apologize.

Have you experienced this personally?

Yes.  I have been a practicing surgeon for more than 25 years and on rare occasion, I have seen a patient where I felt the prior care had not been optimal.

Why might this situation (one doctor learning of another’s mistake) arise more in the current health care climate?

I think this issue arises more now only from an awareness point of view.  That is, the phenomenon of seeing that another clinician may have inadvertently made an error is not a new phenomenon.  What has changed is the understanding that patients have a right to know what has happened to them, and we as a medical community need to discuss and give feedback to our colleagues so that we can all learn from any mistakes and prevent them from happening in the future.

There’s a good deal of talk about more disclosure, honesty and apologies when it comes to medical errors, but are things truly changing? And which institutions are doing the best job ?

Yes, the culture is changing. Continue reading

The Checkup: Talking Back To Your Doctor

Welcome to the The Checkup. Our sixth episode “Talking Back to Your Doctor,” opens with a question: Why do so many of us find it so hellishly hard to speak freely with our doctors? What is it about a white coat that makes even normally assertive people clam up?

(To listen to The Checkup now, click on the arrow above; to download and listen later, press Download; and to get it through iTunes click here.)

We begin with the dramatic story of Alicair Peltonen, an administrative assistant diagnosed with a rare cancer who had to have a chunk the size of a baseball removed from her thigh. Throughout her medical saga, she found that she often had urgent questions echoing in her mind, but felt too inhibited to voice them. She set out to find out why. The Checkup

We speak with Dr. Jo Shapiro of Brigham and Women’s Hospital in Boston about what she calls “Conversation Deficit Disorder” among doctors. And we hear from Dr. Annie Brewster, who has special insight into doctor-patient communication because she’s both a practicing doctor and a multiple sclerosis patient who decided not to follow her doctor’s recommendations about taking a particular medication.

Each episode of the Checkup features a different topic—previous topics included college mental health, sex problems, the Insanity workout and vaccine issues.

This is the closing episode of our first season of The Checkup. Please tell us what you liked and disliked and what you want more of. Like CommonHealth on Facebook or drop a note to podcasts@slate.com.

We’ll keep you posted here on all our plans for future podcasts.

(Not) Talking With Our Doctors: Everybody Has A Story

The scar left by Alicair Peltonen's cancer operation. (Courtesy)

The scar left after a baseball-sized chunk was removed from Alicair Peltonen’s leg. (Courtesy)

A few days ago, I shared my story about doctor-patient communication in this post: When A Patient Asks: Why Won’t Anybody Just Talk To Me?

Apparently, my tale, which began with a description of my surgeon striking a nerve, well…struck a nerve. I have received feedback from many sources, and it illustrates a point I noticed when I first started writing the piece back in May. On this topic, almost everyone has a story. And some of them are doozies.

After I posted a link to my story on Facebook, I received many comments from friends and family acknowledging the importance of talking frankly with your doctor, and noting how hard it can be. One friend offered a story about her fiancé who, while in remission for lung cancer, was erroneously told by a resident that his cancer had returned, only to find out it was actually a virus.

Another friend suggested that one of the areas where doctor-patient communication could be most improved is childbirth, where complications involving anesthesia and unnecessary C-sections require communication over an extended period of time.

Finding a good rapport was part of finding the right surgeon.

The most outstanding Facebook comment came from a middle-school acquaintance with whom I have had no contact, outside of social media, in over 20 years. Kerry sent me a message explaining why my piece rang true for her. A few years back, she had been diagnosed with a rare and complicated brain tumor. “I consulted with 5 neurosurgeons before I found the right one because of the lack of information and the frustrating communication,” she wrote. “Finding a good rapport was part of finding the right surgeon.”

It may seem like overkill to be that picky with a surgeon when time may have been a factor. But further messaging revealed the reason for her meticulous neurosurgeon auditions. Kerry explained that the surgeon she finally chose, at the Mayo Clinic, “took into account my entire life, my age, the fact that I was a single mother, an artist, my preference, etc., when we evaluated the risks of surgery vs. waiting…The more common complications would directly impact all of those aspects of my life.”

“Knowing that he was as concerned as I was made a monumental difference,” Kerry wrote.

Perhaps my proudest moment in this process has been connecting with an amazing young lady named Tatyana. Tatyana’s mother, Sylvia, posted a comment here on CommonHealth, saying her 15-year-old daughter had recently gone through the same diagnosis and treatment that I experienced six years ago. She asked if I’d be willing to connect with her daughter and chat about what it was like. Continue reading

When A Patient Asks, ‘Why Won’t Anybody Just Talk To Me?’

After Alicair Peltonen's leg tumor was removed (courtesy of the author)

The large wound left after Alicair Peltonen’s leg tumor was removed (courtesy of the author)

By Alicair Peltonen
Guest contributor

I watched in fascination as the dermatologic surgeon closed up a hole the size of a baseball in my thigh.

Suddenly, a jolt of pain like nothing I had ever felt before shot through my entire body. My vision tunneled and twirled like a party-favor kaleidoscope. The last thing I remember clearly is crying to my nurse that I was sorry I couldn’t be stronger for her.

I was quickly given Ativan and a painkiller. When the medical team had stitched up my leg and I was coming out of my haze, they handed me to my husband, along with some wound-care instructions and prescriptions, and I went home.

On my couch and in considerable pain, I thought, “What the hell happened in there?

That surgery that seemed to go awry was way back in 2007, but only recently did I put that question to my surgeon, as I tried to understand both my medical care and my reaction to it.  I come away convinced that the operation itself didn’t go wrong — but the doctor-patient communication surrounding it did.

Alicair Peltonen (courtesy)

Alicair Peltonen (courtesy)

Again and again over the course of months, I felt too intimidated to ask the questions echoing in my mind. Nor did my health care team initiate the conversations I desperately needed. That disconnect is a towering problem in American health care, some experts say,

Poor patient-doctor communication, says Harvard School of Public Health professor and former pediatric surgeon Lucian Leape, is “probably the single greatest source of missed information that leads to erroneous treatment, treatment not followed properly, unnecessary anxiety.”

Also, I can attest, it can lead to doubts that may fester for many years.

It began with a blemish

In 1999, while I was living with my parents in Maryland, I noticed that a blemish on my left thigh was not going away. The dermatologist I saw told me it was probably a benign fibroma.  It could be removed for cosmetic purposes or left alone with no detrimental effects.  I figured my COBRA insurance wouldn’t cover anything cosmetic, so I chose the latter.

Eventually I moved to Boston, got married, and landed a very stable job. The growth on my leg hadn’t changed in size or shape, but I decided to brandish my shiny new quality medical insurance and get rid of it. In November of 2007, I showed up for a routine fibroma excision.

Two weeks later, I was alone in my office at 6:30 p.m. when the phone rang. It was the dermatology department. I was told that the growth was not a benign fibroma, but rather a rare malignancy called Dermatofibrosarcoma Protuberans, or DFSP. They had already scheduled me to return to the office in a week for a surgical procedure. Did I have any questions? The conversation went something like this: Continue reading

End-Of-Life Conversation: From Kitchen Table To Your Doctor’s Office

Speaking to your doctor about how you want to die may be as hard as (or even harder than) talking to your family.

So, the folks who created a kit to help you start talking about death with your loved ones, while sitting around the kitchen table, are introducing the next iteration of “The Conversation:” How To Talk To Your Doctor.

doctor-patient

A companion to the original Conversation Starter Kit, (which my blog partner Carey Goldberg used to talk to her father about death and dying) the new kit offers a detailed framework with plenty of helpful tools for the tough discussion. There are worksheets, sample scripts, a glossary of key terms, specifics about what it’s okay to say and clear, factual information on how to talk to your doctor, nurse or another provider about your end-of-life wishes, fears and concerns. (Examples: What to say if your health care provider doesn’t want to talk about it; What to do if your two doctors have conflicting opinions or if you disagree with your siblings.)

The Conversation Project was launched by a group of media and medical professionals who want to help families and loved ones begin to talk about end-of-life care far in advance.

I asked one of the founders, Jessica McCannon, M.D., of the Pulmonary and Critical Care Unit at Massachusetts General Hospital, what the biggest obstacle usually is for patients who wish to initiate these types of conversations and what might they do to overcome these barriers. Here’s her emailed response:

It’s hard to pick just one [obstacle] – and surely it’s a combination of things. The biggest obstacles are assumptions; an assumption that the health care provider will bring it up at the appropriate time. Or fear—that if they, the patient, do raise the subject, that perhaps they will be abandoned, that their health care team won’t continue to provide the care they need, or that their team will give up. Cultural beliefs also play a role; there may be cultural resistance to discussing these topics for some patients, which can be further complicated by family members who are struggling to accept their loved one’s mortality. Time is another; time often comes up in discussions about barriers for health care providers and the health care system, but I think this is also a problem for patients. If you have a limited time with your health care provider, and you have a lot of urgent questions about a new medication, or want to discuss new symptoms, it can be hard to prioritize what can be an emotional discussion over more pressing issues (this means that we all have to get creative about thinking of new formats/ways in which to share information about what matters most to patients)… Continue reading