Opinion Editorial
ARTICLE INFORMATION Author Affiliation: Division of Oncology, Departments of Medicine and Genetics, Stanford University School of Medicine, Stanford, California. Corresponding Author: James M. Ford, MD, Division of Oncology, Departments of Medicine and Genetics, Stanford University School of Medicine, 1115 CCSR Bldg, 269 Campus Dr, Stanford, CA 94305 ([email protected]). Published Online: February 12, 2015. doi:10.1001/jamaoncol.2014.187. Conflict of Interest Disclosures: None reported. REFERENCES 1. Nadauld LD, Ford JM. Molecular profiling of gastric cancer: toward personalized cancer medicine. J Clin Oncol. 2013;31(7):838-839.
2. Chun N, Ford JM. Genetic testing by cancer site: stomach. Cancer J. 2012;18(4):355-363. 3. Hansford S, Kaurah P, Li-Chang H, et al. Hereditary diffuse gastric cancer syndrome: CDH1 mutations and beyond [published online February 12, 2015]. JAMA Oncol. doi:10.1001 /jamaoncol.2014.168. 4. Fitzgerald RC, Hardwick R, Huntsman D, et al; International Gastric Cancer Linkage Consortium. Hereditary diffuse gastric cancer: updated consensus guidelines for clinical management and directions for future research. J Med Genet. 2010; 47(7):436-444. 5. Majewski IJ, Kluijt I, Cats A, et al. An α-E-catenin (CTNNA1) mutation in hereditary diffuse gastric cancer. J Pathol. 2013;229(4):621-629.
7. Kurian AW, Hare EE, Mills MA, et al. Clinical evaluation of a multiple-gene sequencing panel for hereditary cancer risk assessment. J Clin Oncol. 2014;32(19):2001-2009. 8. Lim YC, di Pietro M, O’Donovan M, et al. Prospective cohort study assessing outcomes of patients from families fulfilling criteria for hereditary diffuse gastric cancer undergoing endoscopic surveillance. Gastrointest Endosc. 2014; 80(1):78-87. 9. Norton JA, Ham CM, Van Dam J, et al. CDH1 truncating mutations in the E-cadherin gene: an indication for total gastrectomy to treat hereditary diffuse gastric cancer. Ann Surg. 2007;245(6): 873-879.
6. Gaston D, Hansford S, Oliveira C, et al. Germline mutations in MAP3K6 are associated with familial gastric cancer. PLoS Genet. 2014;10(10):e1004669.
The Myth of the Demanding Patient Anthony L. Back, MD
In this issue of JAMA Oncology, Gogineni and colleagues report on their empirical inquiry into patient demands, 1 a nemesis that proves to be more mythical than real. The study hypothesis—that patient demands for treatments and sc ans drove Related article page 33 u n n e c e s s a r y c o s t s —w a s spectacularly unconfirmed when using data collected from physicians themselves. Only 8% of the patient-physician encounters at 3 cancer centers in Philadelphia involved a patient “demand,” and the majority of those “demands” were viewed by the physician as “clinically appropriate.” Suddenly, the demanding cancer patient looks less like a budget buster and more like an urban myth. In the wake of these findings, the question now deserving of our attention is why does the myth of the demanding patient have so much traction? Surprisingly (as the authors note), no prior empirical study exists to tally patient demands in cancer care, which makes the existence of the demanding patient myth even more curious. My new hypothesis is that these findings say more about our own clinical sensibilities than what they reveal about our patients. We clinicians often, in my own experience, view patients who make a request that is surprising, unjustified, or forceful (eg, a “demand”) as (1) hard to deal with; (2) memorable despite their infrequent appearance; and (3) a convenient target for the bigger, complex, seemingly unsolvable problems we face. When patients make requests forcefully, it is easy for an unskilled clinician to be pushed off balance. A forceful request often carries an undercurrent of hostility that throws oncologists who are used to being treated with deference. We do not like this, and consequently, hostility from the patient tends to provoke hostility from the clinician. For clinicians who have not 18
been trained to detect and respond to emotion as a core communication skill, it is easy to fall into the trap of responding defensively or angrily. From the outside, this skill can look like magic because it is subtle—it starts with self-monitoring.2 The key skill is to notice when you are irritated, and rather than blurt out your defense, pause and step back for a moment. You will then recognize that your patient who is demanding something is actually upset and hurting in a way that is overwhelming their coping skills or, much less often, has a personality such that they deal with everyone in their lives by making demands. A skilled clinician, after the pause, would start with an empathic remark (“Hmm, sounds like this is really important to you”) and modulate accordingly.3 For a patient who is really upset, the emotionally intelligent oncologist might offer more empathy (“I get the feeling you are worried…”) and uncover the real issue (“Yes doctor, I’m just scared”); and when the emotional tone fades, try the information again (“Could I step back—I’ll try to do a better job explaining my recommendations”). Although demanding patients are not common, they often figure prominently in our memories because our cognitive biases tend to spotlight outliers.4 One reason for this is that a demanding, dissatisfied, unhappy patient can tap into our own unhappiness about not being perfect, our own disappointment about not saving the day, and our own dismay about not being appreciated. If we do not have our own skills to emotionally self-regulate and recharge, we tend to give these cognitive biases more influence than they merit. And we have started our day with stress, multitasking, and inadequate sleep—all very common. It is even easier to let our cognitive biases run rampant. A common cognitive bias, misattribution bias, is particularly relevant for this discussion. The demanding patient leaves us with vivid memories, and it is an easy move to pin them (unjustly) with the blame for runaway costs.
JAMA Oncology April 2015 Volume 1, Number 1 (Reprinted)
Copyright 2015 American Medical Association. All rights reserved.
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Editorial Opinion
The real point of the study by Gogineni et al,1 however, is this: we have to stop blaming patients for being demanding. In reality, it is hardly happening. The myth of the demanding patient is more about our own responses and how lackluster communication skills can contribute to difficult situations that stick in our throats and our memories. And when we have calmed down enough to look up, we see that what is really happening between patients and physicians these days is something quite different. The demanding patient myth reflects an old paradigm of patient-clinician interactions: the paternalistic physician told the patient what to do, and the patient who did not like it had to resort to a demand to cut through the physician’s cloak of authority.5 But that old posturing is receding in the face of a new dynamic. We are witnessing a tectonic shift in the dynamics between patients and physicians around cancer.6 Patients used to come to oncologists seeking information about their cancer and recommendations for treatment. Before the Internet, they did not have any other sources. But now in the age of Wikipedia, patients and their families usually come prepared. Patients and families seek and absorb information ARTICLE INFORMATION Author Affiliation: Fred Hutchinson Cancer Research Center, University of Washington, Seattle. Corresponding Author: Anthony L. Back, MD, Seattle Cancer Care Alliance, 825 Eastlake Ave E, PO Box 19023, Seattle, WA 98109 (tonyback@u .washington.edu). Published Online: February 12, 2015. doi:10.1001/jamaoncol.2014.185. Conflict of Interest Disclosures: None reported. REFERENCES 1. Gogineni K, Shuman KL, Chinn D, Gabler NB, Emanuel EJ. Patient demands and requests for
from websites, textbooks, their own medical records, or other patients, all unmediated by clinicians, and they come to visits to verify what they have heard, ask questions, and gain from the physician’s clinical experience. Patients now begin shaping their preferences and decision making before they set foot in the oncologist’s office. The new dynamic is reflected in a fresh view of interactions from other empirical studies. What patients value from physicians is being guided to the information they need and want; being given that information at a pace they can absorb; having access to the physician’s clinical experience; and feeling that the physician recognizes their situation, their individuality, and humanness.7 This dynamic builds trust between patient and physician so that when they need to face the tough decisions, the medical decision making reflects the patient’s real values and not just their fear. It is possible that what the study by Gogineni et al1 documents is a point in the evolution of the patient-physician relationship when both sides recognize that the complexity of cancer care belies a simple fix. Perhaps this “negative” study is pointing to an important truth: that we need to redirect our attention from the myths that are distracting us.
cancer tests and treatments [published online February 12, 2015]. JAMA Oncol. doi:10.1001 /jamaoncol.2014.197.
6. Lee CJ, Gray SW, Lewis N. Internet use leads cancer patients to be active health care consumers. Patient Educ Couns. 2010;81(suppl):S63-S69.
2. Epstein RM. Mindful practice. JAMA. 1999;282(9): 833-839.
7. Back AL, Trinidad SB, Hopley EK, Arnold RM, Baile WF, Edwards KA. What patients value when oncologists give news of cancer recurrence: commentary on specific moments in audio-recorded conversations. Oncologist. 2011;16 (3):342-350.
3. Back AL, Arnold RM. “Isn’t there anything more you can do?”: when empathic statements work, and when they don’t. J Palliat Med. 2013;16(11):1429-1432. 4. Croskerry P. From mindless to mindful practice—cognitive bias and clinical decision making. N Engl J Med. 2013;368(26):2445-2448. 5. Emanuel EJ, Emanuel LL. Four models of the physician-patient relationship. JAMA. 1992;267(16): 2221-2226.
Carcinoma of Unknown Primary Site The Poster Child for Personalized Medicine? Gauri Varadhachary, MD
In this issue of JAMA Oncology, Ross and colleagues1 present results from a retrospective study of 200 consecutive carcinoma of unknown primary site (CUP) tumor specimens that underwent comprehensive genomic profiling (CGP) using Related article page 40 the hybrid-capture–based FoundationOne assay. The DNA extracted from these CUP tumor specimens was analyzed after hybridization capture of 3769 exons from 236 cancer-related genes and 47 introns of 19 genes commonly rearranged in cancer. There were 125 adenocarcinomas of unknown primary site (ACUPs) and 75 nonadenocarcinomas (non-ACUPs). The authors reported that a large number of CUP samples (85%) harbored at least 1 clinijamaoncology.com
cally relevant genomic alteration (GA) with the potential to influence and personalize therapy. The mean number of GAs was 4.2 per tumor. The ACUP tumors were more frequently driven by GAs in the receptor tyrosine kinase (RTK)/Ras/ mitogen-activated protein kinase (MAPK) signaling pathway than non-ACUP tumors. The authors concluded that CGP can identify novel treatment paradigms and suggested that early testing may have utility in CUP management. This study illustrates some important considerations in the diagnostic workup and management of patients with CUP. In many ways, our viewpoints on CUP management recapitulate the broader evolution of how we approach cancer therapy. Historically, CUP was viewed as a distinct form of (Reprinted) JAMA Oncology April 2015 Volume 1, Number 1
Copyright 2015 American Medical Association. All rights reserved.
Downloaded From: http://oncology.jamanetwork.com/ by a UNIVERSITY OF SYDNEY LIBRARY User on 01/20/2016
19
ARTICLE INFORMATION Author Affiliation: Division of Oncology, Departments of Medicine and Genetics, Stanford University School of Medicine, Stanford, California. Corresponding Author: James M. Ford, MD, Division of Oncology, Departments of Medicine and Genetics, Stanford University School of Medicine, 1115 CCSR Bldg, 269 Campus Dr, Stanford, CA 94305 ([email protected]). Published Online: February 12, 2015. doi:10.1001/jamaoncol.2014.187. Conflict of Interest Disclosures: None reported. REFERENCES 1. Nadauld LD, Ford JM. Molecular profiling of gastric cancer: toward personalized cancer medicine. J Clin Oncol. 2013;31(7):838-839.
2. Chun N, Ford JM. Genetic testing by cancer site: stomach. Cancer J. 2012;18(4):355-363. 3. Hansford S, Kaurah P, Li-Chang H, et al. Hereditary diffuse gastric cancer syndrome: CDH1 mutations and beyond [published online February 12, 2015]. JAMA Oncol. doi:10.1001 /jamaoncol.2014.168. 4. Fitzgerald RC, Hardwick R, Huntsman D, et al; International Gastric Cancer Linkage Consortium. Hereditary diffuse gastric cancer: updated consensus guidelines for clinical management and directions for future research. J Med Genet. 2010; 47(7):436-444. 5. Majewski IJ, Kluijt I, Cats A, et al. An α-E-catenin (CTNNA1) mutation in hereditary diffuse gastric cancer. J Pathol. 2013;229(4):621-629.
7. Kurian AW, Hare EE, Mills MA, et al. Clinical evaluation of a multiple-gene sequencing panel for hereditary cancer risk assessment. J Clin Oncol. 2014;32(19):2001-2009. 8. Lim YC, di Pietro M, O’Donovan M, et al. Prospective cohort study assessing outcomes of patients from families fulfilling criteria for hereditary diffuse gastric cancer undergoing endoscopic surveillance. Gastrointest Endosc. 2014; 80(1):78-87. 9. Norton JA, Ham CM, Van Dam J, et al. CDH1 truncating mutations in the E-cadherin gene: an indication for total gastrectomy to treat hereditary diffuse gastric cancer. Ann Surg. 2007;245(6): 873-879.
6. Gaston D, Hansford S, Oliveira C, et al. Germline mutations in MAP3K6 are associated with familial gastric cancer. PLoS Genet. 2014;10(10):e1004669.
The Myth of the Demanding Patient Anthony L. Back, MD
In this issue of JAMA Oncology, Gogineni and colleagues report on their empirical inquiry into patient demands, 1 a nemesis that proves to be more mythical than real. The study hypothesis—that patient demands for treatments and sc ans drove Related article page 33 u n n e c e s s a r y c o s t s —w a s spectacularly unconfirmed when using data collected from physicians themselves. Only 8% of the patient-physician encounters at 3 cancer centers in Philadelphia involved a patient “demand,” and the majority of those “demands” were viewed by the physician as “clinically appropriate.” Suddenly, the demanding cancer patient looks less like a budget buster and more like an urban myth. In the wake of these findings, the question now deserving of our attention is why does the myth of the demanding patient have so much traction? Surprisingly (as the authors note), no prior empirical study exists to tally patient demands in cancer care, which makes the existence of the demanding patient myth even more curious. My new hypothesis is that these findings say more about our own clinical sensibilities than what they reveal about our patients. We clinicians often, in my own experience, view patients who make a request that is surprising, unjustified, or forceful (eg, a “demand”) as (1) hard to deal with; (2) memorable despite their infrequent appearance; and (3) a convenient target for the bigger, complex, seemingly unsolvable problems we face. When patients make requests forcefully, it is easy for an unskilled clinician to be pushed off balance. A forceful request often carries an undercurrent of hostility that throws oncologists who are used to being treated with deference. We do not like this, and consequently, hostility from the patient tends to provoke hostility from the clinician. For clinicians who have not 18
been trained to detect and respond to emotion as a core communication skill, it is easy to fall into the trap of responding defensively or angrily. From the outside, this skill can look like magic because it is subtle—it starts with self-monitoring.2 The key skill is to notice when you are irritated, and rather than blurt out your defense, pause and step back for a moment. You will then recognize that your patient who is demanding something is actually upset and hurting in a way that is overwhelming their coping skills or, much less often, has a personality such that they deal with everyone in their lives by making demands. A skilled clinician, after the pause, would start with an empathic remark (“Hmm, sounds like this is really important to you”) and modulate accordingly.3 For a patient who is really upset, the emotionally intelligent oncologist might offer more empathy (“I get the feeling you are worried…”) and uncover the real issue (“Yes doctor, I’m just scared”); and when the emotional tone fades, try the information again (“Could I step back—I’ll try to do a better job explaining my recommendations”). Although demanding patients are not common, they often figure prominently in our memories because our cognitive biases tend to spotlight outliers.4 One reason for this is that a demanding, dissatisfied, unhappy patient can tap into our own unhappiness about not being perfect, our own disappointment about not saving the day, and our own dismay about not being appreciated. If we do not have our own skills to emotionally self-regulate and recharge, we tend to give these cognitive biases more influence than they merit. And we have started our day with stress, multitasking, and inadequate sleep—all very common. It is even easier to let our cognitive biases run rampant. A common cognitive bias, misattribution bias, is particularly relevant for this discussion. The demanding patient leaves us with vivid memories, and it is an easy move to pin them (unjustly) with the blame for runaway costs.
JAMA Oncology April 2015 Volume 1, Number 1 (Reprinted)
Copyright 2015 American Medical Association. All rights reserved.
Downloaded From: http://oncology.jamanetwork.com/ by a UNIVERSITY OF SYDNEY LIBRARY User on 01/20/2016
jamaoncology.com
Editorial Opinion
The real point of the study by Gogineni et al,1 however, is this: we have to stop blaming patients for being demanding. In reality, it is hardly happening. The myth of the demanding patient is more about our own responses and how lackluster communication skills can contribute to difficult situations that stick in our throats and our memories. And when we have calmed down enough to look up, we see that what is really happening between patients and physicians these days is something quite different. The demanding patient myth reflects an old paradigm of patient-clinician interactions: the paternalistic physician told the patient what to do, and the patient who did not like it had to resort to a demand to cut through the physician’s cloak of authority.5 But that old posturing is receding in the face of a new dynamic. We are witnessing a tectonic shift in the dynamics between patients and physicians around cancer.6 Patients used to come to oncologists seeking information about their cancer and recommendations for treatment. Before the Internet, they did not have any other sources. But now in the age of Wikipedia, patients and their families usually come prepared. Patients and families seek and absorb information ARTICLE INFORMATION Author Affiliation: Fred Hutchinson Cancer Research Center, University of Washington, Seattle. Corresponding Author: Anthony L. Back, MD, Seattle Cancer Care Alliance, 825 Eastlake Ave E, PO Box 19023, Seattle, WA 98109 (tonyback@u .washington.edu). Published Online: February 12, 2015. doi:10.1001/jamaoncol.2014.185. Conflict of Interest Disclosures: None reported. REFERENCES 1. Gogineni K, Shuman KL, Chinn D, Gabler NB, Emanuel EJ. Patient demands and requests for
from websites, textbooks, their own medical records, or other patients, all unmediated by clinicians, and they come to visits to verify what they have heard, ask questions, and gain from the physician’s clinical experience. Patients now begin shaping their preferences and decision making before they set foot in the oncologist’s office. The new dynamic is reflected in a fresh view of interactions from other empirical studies. What patients value from physicians is being guided to the information they need and want; being given that information at a pace they can absorb; having access to the physician’s clinical experience; and feeling that the physician recognizes their situation, their individuality, and humanness.7 This dynamic builds trust between patient and physician so that when they need to face the tough decisions, the medical decision making reflects the patient’s real values and not just their fear. It is possible that what the study by Gogineni et al1 documents is a point in the evolution of the patient-physician relationship when both sides recognize that the complexity of cancer care belies a simple fix. Perhaps this “negative” study is pointing to an important truth: that we need to redirect our attention from the myths that are distracting us.
cancer tests and treatments [published online February 12, 2015]. JAMA Oncol. doi:10.1001 /jamaoncol.2014.197.
6. Lee CJ, Gray SW, Lewis N. Internet use leads cancer patients to be active health care consumers. Patient Educ Couns. 2010;81(suppl):S63-S69.
2. Epstein RM. Mindful practice. JAMA. 1999;282(9): 833-839.
7. Back AL, Trinidad SB, Hopley EK, Arnold RM, Baile WF, Edwards KA. What patients value when oncologists give news of cancer recurrence: commentary on specific moments in audio-recorded conversations. Oncologist. 2011;16 (3):342-350.
3. Back AL, Arnold RM. “Isn’t there anything more you can do?”: when empathic statements work, and when they don’t. J Palliat Med. 2013;16(11):1429-1432. 4. Croskerry P. From mindless to mindful practice—cognitive bias and clinical decision making. N Engl J Med. 2013;368(26):2445-2448. 5. Emanuel EJ, Emanuel LL. Four models of the physician-patient relationship. JAMA. 1992;267(16): 2221-2226.
Carcinoma of Unknown Primary Site The Poster Child for Personalized Medicine? Gauri Varadhachary, MD
In this issue of JAMA Oncology, Ross and colleagues1 present results from a retrospective study of 200 consecutive carcinoma of unknown primary site (CUP) tumor specimens that underwent comprehensive genomic profiling (CGP) using Related article page 40 the hybrid-capture–based FoundationOne assay. The DNA extracted from these CUP tumor specimens was analyzed after hybridization capture of 3769 exons from 236 cancer-related genes and 47 introns of 19 genes commonly rearranged in cancer. There were 125 adenocarcinomas of unknown primary site (ACUPs) and 75 nonadenocarcinomas (non-ACUPs). The authors reported that a large number of CUP samples (85%) harbored at least 1 clinijamaoncology.com
cally relevant genomic alteration (GA) with the potential to influence and personalize therapy. The mean number of GAs was 4.2 per tumor. The ACUP tumors were more frequently driven by GAs in the receptor tyrosine kinase (RTK)/Ras/ mitogen-activated protein kinase (MAPK) signaling pathway than non-ACUP tumors. The authors concluded that CGP can identify novel treatment paradigms and suggested that early testing may have utility in CUP management. This study illustrates some important considerations in the diagnostic workup and management of patients with CUP. In many ways, our viewpoints on CUP management recapitulate the broader evolution of how we approach cancer therapy. Historically, CUP was viewed as a distinct form of (Reprinted) JAMA Oncology April 2015 Volume 1, Number 1
Copyright 2015 American Medical Association. All rights reserved.
Downloaded From: http://oncology.jamanetwork.com/ by a UNIVERSITY OF SYDNEY LIBRARY User on 01/20/2016
19
