Opinion
A PIECE OF MY MIND Bryan Sisk, MD Department of Pediatrics, St Louis Children’s Hospital, St Louis, Missouri.
Corresponding Author: Bryan Sisk, MD ([email protected] .edu). Section Editor: Roxanne K. Young, Associate Senior Editor.
Time Will Tell The sac was empty on the ultrasound screen. There was no heartbeat, no recognizable shape, just an empty black space. After saving the image, the ultrasonographer continued with her measurements in silence. I put my hand on my wife’s shoulder, watching her hold back the tears. I was thankful that we had not told anyone we were expecting. “Maybe we are just a little bit early,” said the ultrasonographer as she walked out of the room, forcing a smile. As a physician, I knew better. I knew that it was almost certainly a miscarriage. I knew that my wife’s medical chart would be permanently tattooed with that ugly terminology: spontaneous abortion. We moved down the hallway to the examination room, feeling as though everyone was staring at us. A few minutes later, the physician came in and reviewed the images. “When we look at the pictures, there is nothing in the gestational sac … yet. But let’s not jump to conclusions. We may just be early,” she said. I did the math in my head, the same calculation that had haunted me since the bleeding started. I pushed back against her offer of hope, trying to hold back the frustration in my voice. She responded kindly. “Well, sure, there is a good chance that you have lost the pregnancy, but we don’t know for sure. Only time will tell. Let’s just wait and see what the tests show next week.” I felt a sting as I remembered the many times I had offered similar encouragements to patients and their families. We don’t know yet if your son has leukemia. It could just be a bad virus. Let’s wait and see. Just hope for the best. We can’t yet be sure if this is a genetic disorder. There are many reasons why certain babies don’t grow quickly. My hope is that he will turn around soon while we wait for the test results to return. The brain MRI looks pretty bad, but it’s hard to tell just how that will affect her in the long run. She will likely have some deficits, but baby brains have a lot of plasticity. Only time will tell. Sometimes I believed what I was saying, but other times I was simply offering a diversion until there was irrefutable evidence. Rather than preparing families for what was likely to happen, I offered hope in something I did not fully believe. When the truth was revealed, it fell with a thud. Uncertainty can be a physician’s best friend, his or her “get-out-of-jail-free” card for difficult discussions. The appeal to hope can serve the dual purpose of momentarily allaying a patient’s fears while buying time for the health care professionals, an easy way to punt a conversation down the road. But my wife and I were not in the market for hope that day.
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“Are you saying that you really think she could be pregnant?” I asked with strained politeness. “Well … it is hard to tell, but … I would say that there is a good chance that you may have lost the pregnancy. I am just saying that we cannot be certain at this point.” “Have you ever seen a couple in our situation end up with a viable pregnancy? Is there really much of a chance?” I asked. “Well … at this point, I would bet that you lost the pregnancy.” We absorbed the blow, sad at the news that we already knew, but free from the pain of anticipation. That evening, we ate a lot of ice cream and began the next phase of our lives, facing the truth with open eyes. Hope is a powerful tool that physicians have wielded incautiously throughout the history of medicine. In the past, many physicians took it upon themselves to conceal bad diagnoses from their patients with evasive statements or blatant lies. Physicians felt obligated to protect their patients from the harm of painful truths, fearing that the loss of hope would inherently worsen their patient’s chances of survival. An excerpt from an 1898 article crystallized this sentiment: “In regard to cancer, the consensus of opinion is that patients be kept in ignorance of the nature and probable outcome of the disease as long as possible, in this way obviating the severe mental depression which invariably accompanies such knowledge.”1 This mentality persisted in medicine until fairly recently. A study from 1961 showed that more than 90% of physicians routinely avoided telling their patients if they had a terminal diagnosis.2 However, by the late 1970s medicine was transitioning from paternalism to an emphasis on autonomy and patients’ rights. As a result, physicians became more likely to tell their patients the truth.3 This trend toward honesty has persisted in medicine, but the truth can be told in shades. The content of conversations may have changed, but the tone and emphasis physicians take during these discussions can still obscure the truth, especially when any amount of uncertainty is present. As one researcher recently noted, “we sometimes respond to this uncertainty by discussing prognosis in vague or overly optimistic terms, waiting for patients to ask for prognostic information, avoiding discussions of prognosis unless the patient is insistent, and focusing conversation on treatment rather than on outcomes.”4 While hope is integral to the patient-physician relationship, it is a tool that must be used cautiously. If not, it can prolong a patient’s anxiety and suffering without changing the outcome. An empty gestational sac either is or is not a miscarriage. A mass either is or is not cancer. The pathologic reality of a diagnosis is impervious (Reprinted) JAMA March 17, 2015 Volume 313, Number 11
Copyright 2015 American Medical Association. All rights reserved.
Downloaded From: http://jama.jamanetwork.com/ by a J H Quillen College User on 05/28/2015
1107
Opinion A Piece of My Mind
to our best hopes, fears, or expectations. By offering an olive branch of hope in something that is highly improbable, physicians are merely biding time until the inevitable rears its head. The problem is that it feels good to offer hope in the face of suffering, regardless of the odds. When given the choice of focusing on either the good news or the bad news in a discussion, skewing toward the positive is always a strong temptation. Not only does it feel good, but it also allows physicians an easy, albeit temporary, escape from the emotional strain of sharing bad news. However, there are tangible implications of giving false hope. When my wife and I left the office that day, we were in a cloud of temporary depression, but we had also been released from the weight of anxious anticipation. The monster was out of the shadows. If we had left with the belief that we were still expecting our next child, we would have continued to suffer through uncertainty with each moment that passed until the next appointment. 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. 1. Mapes CC. Shall patients be informed that they have cancer or syphilis? N Y Med J. 1898;5:560-562.
The allure of uncertainty hangs heavy in the physician’s mind. It is easy to simply say, “Let’s wait and see. Just hope for the best.” When this hope is aimed at a likely outcome, the physician is certainly justified. But if a physician is obscuring the truth, even with good intentions, then he is potentially harming his patients. Garnering hope is part of the physician’s duty, but this hope should be directed toward meaningful, achievable goals. Instead of hoping that a lump is not cancer, we can hope that it responds to therapy. Instead of hoping to indefinitely stave off death, we can hope for the most meaningful and peaceful end of life. Instead of hoping that an empty gestational sac will become a baby, we can hope for a healthy pregnancy in the future. Instilling hope in the improbable directs patients away from hope in the plausible. Reality always declares itself in due time. It is the role of the physician to best prepare patients for the day when the truth becomes evident.
2. Oken D. What to tell cancer patients: a study of medical attitudes. JAMA. 1961;175(13):1120-1128. 3. Novack DH, Plumer R, Smith RL, Ochitill H, Morrow GR, Bennett JM. Changes in physicians’ attitudes toward telling the cancer patient. JAMA. 1979;241(9):897-900.
4. Mack JW, Wolfe J, Cook EF, Grier HE, Cleary PD, Weeks JC. Hope and prognostic disclosure. J Clin Oncol. 2007;25(35):5636-5642. doi:10.1200/JCO .2007.12.6110.
The greatest grace of a gift, perhaps, is that it anticipates and admits of no return. Henry Wadsworth Longfellow (1807-1882)
1108
JAMA March 17, 2015 Volume 313, Number 11 (Reprinted)
Copyright 2015 American Medical Association. All rights reserved.
Downloaded From: http://jama.jamanetwork.com/ by a J H Quillen College User on 05/28/2015
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A PIECE OF MY MIND Bryan Sisk, MD Department of Pediatrics, St Louis Children’s Hospital, St Louis, Missouri.
Corresponding Author: Bryan Sisk, MD ([email protected] .edu). Section Editor: Roxanne K. Young, Associate Senior Editor.
Time Will Tell The sac was empty on the ultrasound screen. There was no heartbeat, no recognizable shape, just an empty black space. After saving the image, the ultrasonographer continued with her measurements in silence. I put my hand on my wife’s shoulder, watching her hold back the tears. I was thankful that we had not told anyone we were expecting. “Maybe we are just a little bit early,” said the ultrasonographer as she walked out of the room, forcing a smile. As a physician, I knew better. I knew that it was almost certainly a miscarriage. I knew that my wife’s medical chart would be permanently tattooed with that ugly terminology: spontaneous abortion. We moved down the hallway to the examination room, feeling as though everyone was staring at us. A few minutes later, the physician came in and reviewed the images. “When we look at the pictures, there is nothing in the gestational sac … yet. But let’s not jump to conclusions. We may just be early,” she said. I did the math in my head, the same calculation that had haunted me since the bleeding started. I pushed back against her offer of hope, trying to hold back the frustration in my voice. She responded kindly. “Well, sure, there is a good chance that you have lost the pregnancy, but we don’t know for sure. Only time will tell. Let’s just wait and see what the tests show next week.” I felt a sting as I remembered the many times I had offered similar encouragements to patients and their families. We don’t know yet if your son has leukemia. It could just be a bad virus. Let’s wait and see. Just hope for the best. We can’t yet be sure if this is a genetic disorder. There are many reasons why certain babies don’t grow quickly. My hope is that he will turn around soon while we wait for the test results to return. The brain MRI looks pretty bad, but it’s hard to tell just how that will affect her in the long run. She will likely have some deficits, but baby brains have a lot of plasticity. Only time will tell. Sometimes I believed what I was saying, but other times I was simply offering a diversion until there was irrefutable evidence. Rather than preparing families for what was likely to happen, I offered hope in something I did not fully believe. When the truth was revealed, it fell with a thud. Uncertainty can be a physician’s best friend, his or her “get-out-of-jail-free” card for difficult discussions. The appeal to hope can serve the dual purpose of momentarily allaying a patient’s fears while buying time for the health care professionals, an easy way to punt a conversation down the road. But my wife and I were not in the market for hope that day.
jama.com
“Are you saying that you really think she could be pregnant?” I asked with strained politeness. “Well … it is hard to tell, but … I would say that there is a good chance that you may have lost the pregnancy. I am just saying that we cannot be certain at this point.” “Have you ever seen a couple in our situation end up with a viable pregnancy? Is there really much of a chance?” I asked. “Well … at this point, I would bet that you lost the pregnancy.” We absorbed the blow, sad at the news that we already knew, but free from the pain of anticipation. That evening, we ate a lot of ice cream and began the next phase of our lives, facing the truth with open eyes. Hope is a powerful tool that physicians have wielded incautiously throughout the history of medicine. In the past, many physicians took it upon themselves to conceal bad diagnoses from their patients with evasive statements or blatant lies. Physicians felt obligated to protect their patients from the harm of painful truths, fearing that the loss of hope would inherently worsen their patient’s chances of survival. An excerpt from an 1898 article crystallized this sentiment: “In regard to cancer, the consensus of opinion is that patients be kept in ignorance of the nature and probable outcome of the disease as long as possible, in this way obviating the severe mental depression which invariably accompanies such knowledge.”1 This mentality persisted in medicine until fairly recently. A study from 1961 showed that more than 90% of physicians routinely avoided telling their patients if they had a terminal diagnosis.2 However, by the late 1970s medicine was transitioning from paternalism to an emphasis on autonomy and patients’ rights. As a result, physicians became more likely to tell their patients the truth.3 This trend toward honesty has persisted in medicine, but the truth can be told in shades. The content of conversations may have changed, but the tone and emphasis physicians take during these discussions can still obscure the truth, especially when any amount of uncertainty is present. As one researcher recently noted, “we sometimes respond to this uncertainty by discussing prognosis in vague or overly optimistic terms, waiting for patients to ask for prognostic information, avoiding discussions of prognosis unless the patient is insistent, and focusing conversation on treatment rather than on outcomes.”4 While hope is integral to the patient-physician relationship, it is a tool that must be used cautiously. If not, it can prolong a patient’s anxiety and suffering without changing the outcome. An empty gestational sac either is or is not a miscarriage. A mass either is or is not cancer. The pathologic reality of a diagnosis is impervious (Reprinted) JAMA March 17, 2015 Volume 313, Number 11
Copyright 2015 American Medical Association. All rights reserved.
Downloaded From: http://jama.jamanetwork.com/ by a J H Quillen College User on 05/28/2015
1107
Opinion A Piece of My Mind
to our best hopes, fears, or expectations. By offering an olive branch of hope in something that is highly improbable, physicians are merely biding time until the inevitable rears its head. The problem is that it feels good to offer hope in the face of suffering, regardless of the odds. When given the choice of focusing on either the good news or the bad news in a discussion, skewing toward the positive is always a strong temptation. Not only does it feel good, but it also allows physicians an easy, albeit temporary, escape from the emotional strain of sharing bad news. However, there are tangible implications of giving false hope. When my wife and I left the office that day, we were in a cloud of temporary depression, but we had also been released from the weight of anxious anticipation. The monster was out of the shadows. If we had left with the belief that we were still expecting our next child, we would have continued to suffer through uncertainty with each moment that passed until the next appointment. 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. 1. Mapes CC. Shall patients be informed that they have cancer or syphilis? N Y Med J. 1898;5:560-562.
The allure of uncertainty hangs heavy in the physician’s mind. It is easy to simply say, “Let’s wait and see. Just hope for the best.” When this hope is aimed at a likely outcome, the physician is certainly justified. But if a physician is obscuring the truth, even with good intentions, then he is potentially harming his patients. Garnering hope is part of the physician’s duty, but this hope should be directed toward meaningful, achievable goals. Instead of hoping that a lump is not cancer, we can hope that it responds to therapy. Instead of hoping to indefinitely stave off death, we can hope for the most meaningful and peaceful end of life. Instead of hoping that an empty gestational sac will become a baby, we can hope for a healthy pregnancy in the future. Instilling hope in the improbable directs patients away from hope in the plausible. Reality always declares itself in due time. It is the role of the physician to best prepare patients for the day when the truth becomes evident.
2. Oken D. What to tell cancer patients: a study of medical attitudes. JAMA. 1961;175(13):1120-1128. 3. Novack DH, Plumer R, Smith RL, Ochitill H, Morrow GR, Bennett JM. Changes in physicians’ attitudes toward telling the cancer patient. JAMA. 1979;241(9):897-900.
4. Mack JW, Wolfe J, Cook EF, Grier HE, Cleary PD, Weeks JC. Hope and prognostic disclosure. J Clin Oncol. 2007;25(35):5636-5642. doi:10.1200/JCO .2007.12.6110.
The greatest grace of a gift, perhaps, is that it anticipates and admits of no return. Henry Wadsworth Longfellow (1807-1882)
1108
JAMA March 17, 2015 Volume 313, Number 11 (Reprinted)
Copyright 2015 American Medical Association. All rights reserved.
Downloaded From: http://jama.jamanetwork.com/ by a J H Quillen College User on 05/28/2015
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