PERS PE C T IV E
Too Much Information
Too Much Information — The Ethics of Self-Disclosure Kelly A. Curran, M.D. the page reads. “New“14admit,” y/o F r/o IBD, needs
c-scope.” In person, the patient is spunky, sassy, filling the team’s day with joy. She dreams of professional dance, being en pointe under the bright lights. She is a fair sprite, ghostly pale after months of bloody diarrhea. After answering our questions, she declares that the hospital isn’t such a bad place and hunkers down with a Cake Boss marathon on television and several liters of prep. Watching her is a painful reminder: I am recently post-op myself. My own admission page would read, “30 y/o F w/ pain, +SIRS.” After several surgeries, I saw the gastroenterologist, who, 1 month and several liters of prep later, reported, “Looks fairly normal. I’ll biopsy it, though, since your case is weird. Could be Crohn’s.” I wait in diagnostic purgatory, pending the pathologist’s report. But this patient’s case is clearer: “Absolutely textbook,” the fellow calls from the OR. “In recovery. Should be up soon.” Soon thereafter, she is waking up, ravenous. She chomps down on chicken tenders. “So, what’s up?” she asks between bites. Tears burn in my eyes as I tell her the truth, the first bitter pill she will have to swallow. The colonoscopy was abnormal, and this isn’t her last, as she’d hoped, but the first of many. Tears flow down my cheeks now; I pause and apologize, joking about what a crazy old woman I’ve become. She laughs politely, but she’s crying too, wiping her eyes and runny nose with her hands. 8
Here are the little deaths that come with being sick: the death of self-image — we are no longer “previously healthy”; the death of dignity — our bathroom habits and bottoms are fair game for open discussion. Here we are living these little deaths together — but very much apart. The patient’s weeping deepens into sobbing. I touch her arm, attempting to soothe her, and tell her that though the outlook seems bleak, things will get better. “You don’t understand!” she chokes out between sobs. In this moment, I am caught: Do I let her know that the chasm between us isn’t actually so vast? What should a good doctor do? Hippocrates offered no guidance on the ethics of personal disclosure. These fairly mundane moments — when nobody’s life hangs in the balance — can indolently plague us. In itself, the act of disclosure isn’t difficult, but sharing personal experiences exposes both our biases and our vulnerabilities, which may not be socially, professionally, or emotionally safe. In part because these factors may deeply influence our perspectives, disclosure to a patient is complex. In medical school, we learn to moderate our personality, our clothing, our very being, attempting to wash away biases that might impair our ability to care for patients. Gone are crosses, body jewelry, and political buttons; in their places may be brightly colored ribbons for a cause. Remain professional, we are told. Yet we can be cleansed of individuality to the point of appearing cold, almost sterile. Pa-
tients don’t want automatons; they want physicians who know them, who treat them like friends or neighbors. This humanness is part of developing relationships — a need that becomes evident to me in clinic when a patient does something like notice my new engagement ring and ask about the wedding. Few physicians or ethicists would take exception to small disclosures, such as revealing to a young patient the identity of our favorite superhero. But when patients ask our political views or want us to pray with them, we often hesitate, wondering about our appropriate roles. Thornier still is the question of what to do when patients “friend” us on Facebook. Where do we draw the line? Psychologists call these lines boundaries, and though many physicians have little patience for such talk, it is essential to recognize appropriate limits for personal disclosure. Sometimes when boundaries have been crossed and feelings have been hurt, it’s impossible to go back. Add in the power imbalance inherent in the physician–patient relationship, and disclosure becomes even more potentially perilous. Patients reveal their intimate secrets, and we help them through some of the worst moments of their lives. But we aren’t their friends or confidants. When it comes to their medical issues and needs, we are not their equals. Nor are the effects of these relationships unilateral. Physicians often take bad outcomes and patients’ noncompliance as personal failures. Our calling and caring don’t end at sign-out; we take
n engl j med 371;1 nejm.org july 3, 2014
The New England Journal of Medicine Downloaded from nejm.org on October 11, 2015. For personal use only. No other uses without permission. Copyright © 2014 Massachusetts Medical Society. All rights reserved.
PE R S PE C T IV E
our “work” home with us, hugging our families tighter on bad days. For better or worse, we also carry our bad outcomes to the next patient’s bedside. In such a fraught relationship, what benefit can personal disclosure provide? The experience of illness is isolating. When we become seriously ill, our identity may be radically transformed. Disease can make us into “victims” or “survivors,” insidiously becoming an unwelcome defining characteristic. And despite the support of family and friends, we often walk a mostly solitary road of uncertainty and suffering. Unsurprisingly, patients search for others — seeking compassion and companionship — on blogs and through advocacy groups. For our part, we physicians often select our profession because of personal experiences, which may give us the passion to become powerful patient advocates. Disclosing our personal experience with illness can connect us with our patients; patients can form strong therapeutic alliances with clinicians who personally understand their situations. Although modern medical advances may make the impossible seem possible, the capacity for cure remains finite, and physicians have limitations. Disclosure
Too Much Information
of our vulnerabilities changes the way that patients see us; recognizing our limitations may help them recognize their own. Yet because of the gravity of patients’ decisions, the risk of influence, and the inherent power imbalance, we must approach personal disclosure carefully. When contemplating a personal revelation, we should consider our intentions. By asking simple questions — What is my purpose in making this disclosure? How could it benefit my patient? Could it hurt our relationship? — and answering truthfully, we can weigh the risks and benefits within the context of the particular physician–patient relationship. When I think through these considerations with respect to the girl with IBD, I decide that in this moment the risks are too great. My motives at this time aren’t completely altruistic. For several months, I have been swallowing down this painful, intensely personal secret, and here it is, burning to be spoken. Even with the kindness of family and friends, I feel isolated. I crave a confidant — one who understands where I am and where I have been. Even if it’s only a small part of my motivation, wanting that recognition from a patient — and one I’ve only just met —
is inappropriate and selfish. Moreover, the patient isn’t seeking companionship in this moment. She is expressing existential sorrow over her illness. Disclosing my illness to her now would diminish the importance of her own grieving — she is just beginning to cope with her own diagnosis and cannot bear the suffering of another. To support her, I have to give her time and space. “I’m sorry you’re going through this,” I offer, and then I excuse myself. The team returns later with a list of celebrities with IBD, and we jokingly add the patient’s name as a future professional dancer. That day, she starts treatment with a grace beyond her years. Her parents suspect the truth about my condition — or some part of it, I imagine — and thank me with hugs and tears when their daughter is discharged. Holding back my own tears, I reply, “The privilege was mine.” Identifying details have been changed to protect the patient’s privacy. Disclosure forms provided by the author are available with the full text of this article at NEJM.org. From the Section of Adolescent Medicine, Department of Pediatrics, University of Oklahoma Health Sciences Center, Oklahoma City. DOI: 10.1056/NEJMp1404119 Copyright © 2014 Massachusetts Medical Society.
n engl j med 371;1 nejm.org july 3, 2014
The New England Journal of Medicine Downloaded from nejm.org on October 11, 2015. For personal use only. No other uses without permission. Copyright © 2014 Massachusetts Medical Society. All rights reserved.
9
Too Much Information
Too Much Information — The Ethics of Self-Disclosure Kelly A. Curran, M.D. the page reads. “New“14admit,” y/o F r/o IBD, needs
c-scope.” In person, the patient is spunky, sassy, filling the team’s day with joy. She dreams of professional dance, being en pointe under the bright lights. She is a fair sprite, ghostly pale after months of bloody diarrhea. After answering our questions, she declares that the hospital isn’t such a bad place and hunkers down with a Cake Boss marathon on television and several liters of prep. Watching her is a painful reminder: I am recently post-op myself. My own admission page would read, “30 y/o F w/ pain, +SIRS.” After several surgeries, I saw the gastroenterologist, who, 1 month and several liters of prep later, reported, “Looks fairly normal. I’ll biopsy it, though, since your case is weird. Could be Crohn’s.” I wait in diagnostic purgatory, pending the pathologist’s report. But this patient’s case is clearer: “Absolutely textbook,” the fellow calls from the OR. “In recovery. Should be up soon.” Soon thereafter, she is waking up, ravenous. She chomps down on chicken tenders. “So, what’s up?” she asks between bites. Tears burn in my eyes as I tell her the truth, the first bitter pill she will have to swallow. The colonoscopy was abnormal, and this isn’t her last, as she’d hoped, but the first of many. Tears flow down my cheeks now; I pause and apologize, joking about what a crazy old woman I’ve become. She laughs politely, but she’s crying too, wiping her eyes and runny nose with her hands. 8
Here are the little deaths that come with being sick: the death of self-image — we are no longer “previously healthy”; the death of dignity — our bathroom habits and bottoms are fair game for open discussion. Here we are living these little deaths together — but very much apart. The patient’s weeping deepens into sobbing. I touch her arm, attempting to soothe her, and tell her that though the outlook seems bleak, things will get better. “You don’t understand!” she chokes out between sobs. In this moment, I am caught: Do I let her know that the chasm between us isn’t actually so vast? What should a good doctor do? Hippocrates offered no guidance on the ethics of personal disclosure. These fairly mundane moments — when nobody’s life hangs in the balance — can indolently plague us. In itself, the act of disclosure isn’t difficult, but sharing personal experiences exposes both our biases and our vulnerabilities, which may not be socially, professionally, or emotionally safe. In part because these factors may deeply influence our perspectives, disclosure to a patient is complex. In medical school, we learn to moderate our personality, our clothing, our very being, attempting to wash away biases that might impair our ability to care for patients. Gone are crosses, body jewelry, and political buttons; in their places may be brightly colored ribbons for a cause. Remain professional, we are told. Yet we can be cleansed of individuality to the point of appearing cold, almost sterile. Pa-
tients don’t want automatons; they want physicians who know them, who treat them like friends or neighbors. This humanness is part of developing relationships — a need that becomes evident to me in clinic when a patient does something like notice my new engagement ring and ask about the wedding. Few physicians or ethicists would take exception to small disclosures, such as revealing to a young patient the identity of our favorite superhero. But when patients ask our political views or want us to pray with them, we often hesitate, wondering about our appropriate roles. Thornier still is the question of what to do when patients “friend” us on Facebook. Where do we draw the line? Psychologists call these lines boundaries, and though many physicians have little patience for such talk, it is essential to recognize appropriate limits for personal disclosure. Sometimes when boundaries have been crossed and feelings have been hurt, it’s impossible to go back. Add in the power imbalance inherent in the physician–patient relationship, and disclosure becomes even more potentially perilous. Patients reveal their intimate secrets, and we help them through some of the worst moments of their lives. But we aren’t their friends or confidants. When it comes to their medical issues and needs, we are not their equals. Nor are the effects of these relationships unilateral. Physicians often take bad outcomes and patients’ noncompliance as personal failures. Our calling and caring don’t end at sign-out; we take
n engl j med 371;1 nejm.org july 3, 2014
The New England Journal of Medicine Downloaded from nejm.org on October 11, 2015. For personal use only. No other uses without permission. Copyright © 2014 Massachusetts Medical Society. All rights reserved.
PE R S PE C T IV E
our “work” home with us, hugging our families tighter on bad days. For better or worse, we also carry our bad outcomes to the next patient’s bedside. In such a fraught relationship, what benefit can personal disclosure provide? The experience of illness is isolating. When we become seriously ill, our identity may be radically transformed. Disease can make us into “victims” or “survivors,” insidiously becoming an unwelcome defining characteristic. And despite the support of family and friends, we often walk a mostly solitary road of uncertainty and suffering. Unsurprisingly, patients search for others — seeking compassion and companionship — on blogs and through advocacy groups. For our part, we physicians often select our profession because of personal experiences, which may give us the passion to become powerful patient advocates. Disclosing our personal experience with illness can connect us with our patients; patients can form strong therapeutic alliances with clinicians who personally understand their situations. Although modern medical advances may make the impossible seem possible, the capacity for cure remains finite, and physicians have limitations. Disclosure
Too Much Information
of our vulnerabilities changes the way that patients see us; recognizing our limitations may help them recognize their own. Yet because of the gravity of patients’ decisions, the risk of influence, and the inherent power imbalance, we must approach personal disclosure carefully. When contemplating a personal revelation, we should consider our intentions. By asking simple questions — What is my purpose in making this disclosure? How could it benefit my patient? Could it hurt our relationship? — and answering truthfully, we can weigh the risks and benefits within the context of the particular physician–patient relationship. When I think through these considerations with respect to the girl with IBD, I decide that in this moment the risks are too great. My motives at this time aren’t completely altruistic. For several months, I have been swallowing down this painful, intensely personal secret, and here it is, burning to be spoken. Even with the kindness of family and friends, I feel isolated. I crave a confidant — one who understands where I am and where I have been. Even if it’s only a small part of my motivation, wanting that recognition from a patient — and one I’ve only just met —
is inappropriate and selfish. Moreover, the patient isn’t seeking companionship in this moment. She is expressing existential sorrow over her illness. Disclosing my illness to her now would diminish the importance of her own grieving — she is just beginning to cope with her own diagnosis and cannot bear the suffering of another. To support her, I have to give her time and space. “I’m sorry you’re going through this,” I offer, and then I excuse myself. The team returns later with a list of celebrities with IBD, and we jokingly add the patient’s name as a future professional dancer. That day, she starts treatment with a grace beyond her years. Her parents suspect the truth about my condition — or some part of it, I imagine — and thank me with hugs and tears when their daughter is discharged. Holding back my own tears, I reply, “The privilege was mine.” Identifying details have been changed to protect the patient’s privacy. Disclosure forms provided by the author are available with the full text of this article at NEJM.org. From the Section of Adolescent Medicine, Department of Pediatrics, University of Oklahoma Health Sciences Center, Oklahoma City. DOI: 10.1056/NEJMp1404119 Copyright © 2014 Massachusetts Medical Society.
n engl j med 371;1 nejm.org july 3, 2014
The New England Journal of Medicine Downloaded from nejm.org on October 11, 2015. For personal use only. No other uses without permission. Copyright © 2014 Massachusetts Medical Society. All rights reserved.
9
