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What Would You Do, Doctor?

Tuesday, March 4, 2014 // Uncategorized

A poignant essay from this week’s Journal of the AMA (JAMA) in which the physician, Dr. Rebekah Mannix, describes old school, paternalistic medicine versus new school, shared decision making.  She describes being torn between the two.  Her aside about the attitudes of recent graduates is spot on.” What do graduating residents worry about most when assuming their first professional job?6 The availability of free time. ”  I agree with her.  We don’t do our patients a service by sitting on the sidelines.  We have to have some skin in the game.

A Piece of My Mind | March 5, 2014

What Would You Do, Doctor?

Rebekah Mannix, MD, MPH1
1Division of Emergency Medicine, Department of Medicine, Boston Children’s Hospital, Boston, Massachusetts

 

JAMA. 2014;311(9):911-912. doi:10.1001/jama.2014.910.

 

 

The first time I remember hearing, or perhaps really feeling, this question came when I was a junior resident in pediatrics. By then I had assembled a small cohort of primary care patients for whom I truly felt responsible. With the initial shock and blind ignorance of intern year behind me, I had begun to understand my role in guiding my patients through a healthy childhood, or at least navigating through a complex medical system. One patient, Alek, was a sweet 4-year-old boy, whose parents had emigrated from Albania in the hopes of improving his medical condition. Alek was missing a small part of chromosome 4, which resulted in a host of problems including development delays, seizure disorder, vision problems, and chronic aspiration. He couldn’t speak and barely walked. He was happy, bubbly, and beloved. His mother and father would bring him to his clinic appointments dressed in their Sunday finest—he in a navy blue sweater with a cartoon character emblazoned on the front, his mother in a long flowery dress with boots, and his father in a tie. They always brought me some sort of gift, a box of candy or Alek’s preschool picture in the same navy blue sweater he wore to his appointments. I still have that picture in my desk.

 

But now Alek was gravely, irretrievably ill. What started off as an ear infection progressed to meningitis, then a head bleed, then cardiopulmonary arrest. I had visited him frequently during his 1-month hospitalization, watching his parents slowly lose hope for the return of their sweet boy, their only child. Now, we sat in a team meeting, with the ICU attending, the neurology attending, the coordinated care attending, an ethicist, me, the Albanian interpreter, and the family. The situation was dire, the interpreter relayed to the family, there was little hope for recovery. The MRI and EEG done the night before bore no good news. Alek would likely never come off the ventilator. The question before the family was, do you want to redirect care, extubate him, and let “nature take its course”?

 

And so, with this room full of senior physicians and experts, the family turned to me, their junior resident primary care physician, and asked, “What would you do, Doctor?”

 

Having been a physician for only 1 year and not having suffered many personal losses or hardships of my own at that time, I paused, but only briefly. A question was asked, and I would answer it, with an untroubled assurance that 14 more years of life and medicine would later erode.

 

“I would let him go.”

 

I may have heard a quiet gasp from someone in the room. The ICU attending stared at me (with approval? with horror?). Alek’s parents nodded, reached out their hands to me, bowed their heads, and agreed to have the breathing tube pulled. He died later that day.

 

Two months later, I saw the Albanian interpreter in the elevator. He told me that Alek’s parents weren’t doing so well. They felt like they had killed Alek by allowing the breathing tube to be pulled. I felt sick. One year later, when I was finished with residency, I got a call from Alek’s parents saying they had a new baby, and would I be her primary care physician. I still felt sick.

 

Since Alek, I became much more circumspect in how I answered the question “What would you do?” Often, I would explain how every individual is different, laying out the pros and cons of the intervention in question. I would cite medical evidence, calculate risks, and defer decision-making to families when neither the evidence nor risks strongly favored a single course of action, even if I felt strongly about the best course of action. This, I felt confident, was patient-centered care. I understood and agreed that when dealing with “questions of value,” physicians should view their role as “facilitative rather than directive.”1 On any given emergency department shift, I could be heard reciting the following mantra to my patients and their families: “You are flying this plane. I am only helping you navigate.”

 

My 84-year-old mother hates physicians like me. “Why don’t doctors tell patients what to do anymore?” She is stymied by the choices offered her and doesn’t feel a 10-minute office visit and the information relayed therein is an adequate surrogate for medical school and years of practice. More than occasionally, she will complain to me, “How should I know if I really need to have a heart catheterization or not” or “Why do I have to decide if it’s time to stop taking my blood pressure medications?” I reassure her that while the doctors are medical experts, she is the only “her” expert, and the medical decision-making has to be shared. Unconvinced, she shrugs. I further explain to her that medicine is no longer the paternalistic discipline it once was. She then asks, “What’s wrong with paternalism?”

 

This generational divide likely cannot be breached. Gone, and thankfully so, are the days of House of God, where a medical “deity” decides the fate of his (yes, his) patients. We have certainly evolved from the days of this type of paternalistic medicine, this covert and mysterious practice of healing. In the modern era, the vast majority of physicians would never hide a cancer diagnosis from their patient, in contrast to mid-century medicine, when a physician survey demonstrated that 90% of physicians would not tell their cancer patients their diagnosis.2 But this open practice of medicine is not so easy, because now physicians are saddled with not only what to tell their patients but also how to tell them. And in an era of conflicting forces (increasingly complex patients vs 10-minute appointments, Google searches vs evidence-based medicine, cost-effectiveness vs personalized medicine), curating the how and what of disseminating information to our patients is almost mind-numbingly complicated.

 

To add to this complexity, even our ethicists can’t decide what Alek’s parents were really asking me, let alone whether or not I should answer.1,3– 5 Were they asking for my expert opinion? Were they asking me to validate their own? Were they asking me just to decide for them? These questions are relatively new ones and have flourished in our era of patient-centered care. With decision-making and responsibility evenly distributed between physician and patient, physicians can let their patients carry more of the burden. We can choose not to answer, or sidestep, or redirect the question. But I wonder, is it just as paternalistic to reinterpret the question as it is to just answer it?

 

Perhaps my mother’s disdain of the modern model of shared medical decision-making reflects something else missing from our current practice of modern medicine. Perhaps my mother subconsciously objects to what feels like diminished physician personal ownership and responsibility in our nonpaternalistic practice, our what I call “emotional work hours.” Our time is rationed, our care is rationed, and our emotions are rationed. What do graduating residents worry about most when assuming their first professional job?6 The availability of free time.

 

Maybe the paternalistic era of medicine did offer our patients some advantages. Aside from the unwanted hierarchical implications, the word paternalism does imply not only a relationship between physician and patient, but also a deep responsibility of the physician to the patient. Perhaps when our patients ask us “What would you do, Doctor?” they are asking us to put some skin in the game, to really care about the outcome as if it were our own.

 

Recently, I have been forced to witness modern medicine from the perspective of a family member. The truth is, I don’t know how nonphysicians, ie, most of our patients, navigate the medical system as well as they do. When my husband was diagnosed with pancreatic cancer, we faced an initial onslaught of choices that I was intellectually if not emotionally well equipped to make. I didn’t need or want much input from his primary care physician, and, in the decisive (and some would say impulsive) way that emergency medicine physicians often have, I chose a hospital, a surgeon, and an oncologist within a day or so of the diagnosis. We plunged forward, my husband with blind faith and me with manic purpose. Now that his disease has progressed, I need more help navigating the choices. We are lucky in that Dr K, my husband’s oncologist, is not only a kind and thoughtful man, but a man who really knows his stuff.

 

So, as we sit in Dr K’s examination room, we hear a well-rehearsed litany of choices. There is the possibility of ablation for the hepatic metastases, followed by octreotide therapy. Resection may or may not be an option. VEGF and mTOR inhibitors may also be in play. Liver transplant is out. As we listen to our choices, I look at my husband, who appears perplexed. It’s too much for his layman’s ears, and despite the gravitas of the situation, his eyes are beginning to glaze over. I know what I would do, what I want to do. But that’s not what my husband wants to hear, what he needs to hear. I know it’s not fair and I feel sorry for Dr K, but I lean in anyway, and ask what needs to be asked: “What would you do, Doctor?”

ARTICLE INFORMATION

 

Section Editor: Roxanne K. Young, Associate Senior Editor.

 

Corresponding Author: Rebekah Mannix, MD, MPH ([email protected]).

Conflict of Interest Disclosures: The author has completed and submitted the ICMJE Form for the Disclosure of Potential Conflicts of Interest and none were reported.

REFERENCES

 

1 +
Truog  RD.  “Doctor, if this were your child, what would you do”? Pediatrics. 1999;103(1):153-154.
PubMed   |  Link to Article
2 +
Oken  D.  What to tell cancer patients: a study of medical attitudes. JAMA. 1961;175(13):1120-1128.
PubMed   |  Link to Article
3 +
Gutgesell  HP.  What if it were your child? Am J Cardiol. 2002;89(7):856.
PubMed   |  Link to Article
4 +
Ross  LF.  Why “doctor, if this were your child, what would you do?” deserves an answer. J Clin Ethics. 2003;14(1-2):59-62.
PubMed
5 +
Ruddick  W.  Answering parents’ questions. J Clin Ethics. 2003;14(1-2):68-70.
PubMed
6 +
2011 Survey of Final-Year Medical Residents. http://www.merritthawkins.com/pdf/mha2011residentsurvpdf.pdf. Accessed January 12, 2014.
Copyright ©2014 American Medical Association
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