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Less Patient-Centered Care: An Unintended Consequence of Guidelines?: Comment on “Patient Perceptions, Physician Communication, and the Implantable Cardioverter-Defibrillator”

Less Patient-Centered Care: An Unintended Consequence of Guidelines?: Comment on “Patient... Sudden cardiac death is a leading cause of death in the United States and worldwide. The first successful insertion of an implantable cardioverter-defibrillator (ICD) in the 1980s heralded a new era of treatment for sudden cardiac death. Although ICDs were initially implanted to prevent the death of patients who had survived a potentially lethal arrhythmia, randomized controlled trials have also demonstrated the efficacy of ICDs for patients at high risk of having a sudden cardiac death.1 Consequently, ICDs have become a guideline-recommended mainstay of treatment for the primary and secondary prevention of sudden cardiac death. However, ICD therapy may also present a significant burden for some patients. In addition to procedure-related complications, ICD therapy has been associated with a diminished quality of life if patients are shocked, as well as anxiety and posttraumatic stress disorder.2 Also, some patients may be at a place in life where dying quickly is not the worst possible outcome. Patients and physicians, then, face a difficult decision whether to proceed with ICD therapy. Given the risk of harm, clinical practice guidelines suggest a decision-making process that not only considers the clinical evidence base, life expectancy, comorbid conditions, and procedural risks but also a patient's preferences.3 In this issue of JAMA Internal Medicine, Hauptman and colleagues4 provide an important and sobering snapshot of physician-patient conversations about ICD therapy in current practice. In focus groups, they found that patients believed they received little detailed information about the procedure and that decisions were made hastily, leading to significant misperceptions about the benefits and risks of the device. Recordings of clinical interactions between standardized patients and physicians illuminated the reasons behind patients' focus group responses. No physicians in the study discussed the prevalence of life-saving ICD shocks, inappropriate shocks, or the risk of death despite ICD shock, and during the discussions, technical medical terms were often used. Few interviews discussed the effect of ICD therapy on quality of life or long-term ICD risks, such as device recall, inappropriate shock, or depression, and those that did raise these topics minimized the risk. This study adds to the growing body of evidence that there is inadequate communication and little shared decision making occurring for situations such as ICD surgery. Conversations seem to be geared toward satisfying informed consent requirements and convincing the patient to undergo the surgical procedure. For example, when physicians discussed the benefit of the ICD, they used overly confident statements, such as “The ICD will prolong your life” or “The ICD will save your life.” With statements of such certainty, it is no wonder that patients wildly overestimated the benefits of the ICD. In addition, patients believed that physicians discussed the option of ICD in absolute terms, not allowing for much discussion about patient preferences. Although this study was small and conversations with standardized patients may differ from those with actual patients, the results illuminate a troubling situation in which patients are not only given incomplete information that is biased toward a particular viewpoint, but they are also not given an opportunity to consider and discuss their preferences for treatment. While these physicians likely believe that they have the patient's best interest in mind, their approach is paternalistic and does not achieve the goals of shared decision making and patient-centered care, that is, ensuring the patient's understanding of the risks, benefits, and alternatives; exploring his or her values; and actively engaging him or her in the decision-making process. Convincing physicians to engage in shared decision making is a complex undertaking, as physicians may believe that they are following clinical practice guidelines in strongly recommending an ICD to eligible patients.5 Because quality improvement efforts often focus on increasing physician adherence to guidelines and reward physicians for clinical processes or outcomes rather than high-quality decision making (eg, assessment of whether a mammogram was ordered for breast cancer screening rather than whether a conversation about the risks and benefits of breast cancer screening occurred), the message to physicians is that guideline adherence, rather than individualized care, is best. However, as Hauptman et al4 observed, an unintended consequence of blind application of the guidelines is that it promotes a paternalistic, rather than patient-centered, decision-making process. As a result, little opportunity exists for patients to engage in the decision-making process. In this situation, patients may be reluctant to share their preferences for fear of contradicting the physician and being labeled a “difficult patient.”6 In addition, physicians often view death as a failure, so there may also be psychological barriers to the concept of not providing a “life-saving” treatment. Time pressures, medicolegal worries, and a fee-for-service reimbursement system that values performing procedures over discussions with patients may also contribute to a medical culture that eschews shared decision making. It is little wonder, then, that elicitation of patient preferences is not the norm for discussions about an ICD and little shared decision making occurs in current practice. How do we remedy the seeming contradiction among quality care promoted by guideline adherence and quality care promoted by shared decision making and the tenets of patient-centered care? First, there is a need to rethink the concept of high-quality care to include care that is consistent with the preferences of an informed patient. Future guidelines, for example, should not only promote the role of shared decision making but also provide ways of measuring physician success at engaging patients in high-quality decision-making processes and reward physicians for doing so. This is particularly important in cases in which risk to benefit ratio is small, the evidence base is not robust, or the adverse effects may have a large influence on quality of life. There is evidence the culture may be beginning to change; recently, a new performance measure has been developed for ICDs promoting the rate of discussion about ICDs rather than the rate of ICD use.7 Physicians will not be penalized if a patient makes a different decision than the physician's recommendation. This type of measure development and implementation is critical for increasing shared decision making in practice in all areas of medicine. Furthermore, the incentives in the health care system require alignment to encourage high-quality decision making. For more shared decision making to occur, high-quality, unbiased information needs to be available to patients on a consistent basis. This could be accomplished, for example, by encouraging greater use of decision support interventions, such as decision aids, which have been linked with higher patient knowledge and decisions that are more consistent with patient preferences.8 Payment reform in this area should include provisions to reward shared decision making and, ideally, would also tie reimbursement for elective procedures to a decision that is consistent with the values of a well-informed patient. Finally, legislation that promotes shared decision making (eg, the Affordable Care Act) and gives a higher degree of protection from malpractice lawsuits for shared decision making (as in Washington state) can help create a medical culture in which active patient engagement and shared decision making are the norm rather than the exception. Given that ICD therapy is a serious and life-changing medical procedure, the highest priority for quality improvement in this area should be ensuring that the decision-making process is both evidence based and patient centered. Back to top Article Information Correspondence: Dr Lin, Division of General Internal Medicine and Phillip R. Lee Institute for Health Policy Studies, University of California, San Francisco, PO Box 0320, San Francisco, CA 94143 (glin@medicine.ucsf.edu). Published Online: February 18, 2013. doi:10.1001/jamainternmed.2013.4187 Conflict of Interest Disclosures: None reported. References 1. Bardy GH, Lee KL, Mark DB, et al; Sudden Cardiac Death in Heart Failure Trial (SCD-HeFT) Investigators. Amiodarone or an implantable cardioverter-defibrillator for congestive heart failure. N Engl J Med. 2005;352(3):225-23715659722PubMedGoogle ScholarCrossref 2. Mark DB, Anstrom KJ, Sun JL, et al; Sudden Cardiac Death in Heart Failure Trial Investigators. Quality of life with defibrillator therapy or amiodarone in heart failure. N Engl J Med. 2008;359(10):999-100818768943PubMedGoogle ScholarCrossref 3. Epstein AE, DiMarco JP, Ellenbogen KA, et al; American College of Cardiology/American Heart Association Task Force on Practice Guidelines (Writing Committee to Revise the ACC/AHA/NASPE 2002 Guideline Update for Implantation of Cardiac Pacemakers and Antiarrhythmia Devices); American Association for Thoracic Surgery; Society of Thoracic Surgeons. ACC/AHA/HRS 2008 Guidelines for Device-Based Therapy of Cardiac Rhythm Abnormalities: a report of the American College of Cardiology/American Heart Association Task Force on Practice Guidelines (Writing Committee to Revise the ACC/AHA/NASPE 2002 Guideline Update for Implantation of Cardiac Pacemakers and Antiarrhythmia Devices): developed in collaboration with the American Association for Thoracic Surgery and Society of Thoracic Surgeons [published correction appears in Circulation. 2009 Aug 4; 120(5):e34-e35]. Circulation. 2008;117(21):e350-e40818483207PubMedGoogle ScholarCrossref 4. Hauptman PJ, Chibnall JT, Guild C, Armbrecht ES. Patient perceptions, physician communication, and the implantable cardioverter-defibrilator [published online February 18, 2013]. JAMA Intern Med. 2013;173(7):571-577Google Scholar 5. Matlock DD, Nowels CT, Masoudi FA, et al. Patient and cardiologist perceptions on decision making for implantable cardioverter-defibrillators: a qualitative study. Pacing Clin Electrophysiol. 2011;34(12):1634-164421972983PubMedGoogle ScholarCrossref 6. Frosch DL, May SG, Rendle KA, Tietbohl C, Elwyn G. Authoritarian physicians and patients' fear of being labeled ‘difficult’ among key obstacles to shared decision making. Health Aff (Millwood). 2012;31(5):1030-103822566443PubMedGoogle ScholarCrossref 7. Bonow RO, Ganiats TG, Beam CT, et al; American College of Cardiology Foundation; American Heart Association Task Force on Performance Measures; American Medical Association-Physician Consortium for Performance Improvement. ACCF/AHA/AMA-PCPI 2011 performance measures for adults with heart failure: a report of the American College of Cardiology Foundation/American Heart Association Task Force on Performance Measures and the American Medical Association-Physician Consortium for Performance Improvement. Circulation. 2012;125(19):2382-240122528524PubMedGoogle ScholarCrossref 8. Stacey D, Bennett CL, Barry MJ, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2011;10(10):CD00143121975733PubMedGoogle Scholar http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png JAMA Internal Medicine American Medical Association

Less Patient-Centered Care: An Unintended Consequence of Guidelines?: Comment on “Patient Perceptions, Physician Communication, and the Implantable Cardioverter-Defibrillator”

JAMA Internal Medicine , Volume 173 (7) – Apr 8, 2013

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American Medical Association
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Copyright © 2013 American Medical Association. All Rights Reserved.
ISSN
2168-6106
eISSN
2168-6114
DOI
10.1001/jamainternmed.2013.4187
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Abstract

Sudden cardiac death is a leading cause of death in the United States and worldwide. The first successful insertion of an implantable cardioverter-defibrillator (ICD) in the 1980s heralded a new era of treatment for sudden cardiac death. Although ICDs were initially implanted to prevent the death of patients who had survived a potentially lethal arrhythmia, randomized controlled trials have also demonstrated the efficacy of ICDs for patients at high risk of having a sudden cardiac death.1 Consequently, ICDs have become a guideline-recommended mainstay of treatment for the primary and secondary prevention of sudden cardiac death. However, ICD therapy may also present a significant burden for some patients. In addition to procedure-related complications, ICD therapy has been associated with a diminished quality of life if patients are shocked, as well as anxiety and posttraumatic stress disorder.2 Also, some patients may be at a place in life where dying quickly is not the worst possible outcome. Patients and physicians, then, face a difficult decision whether to proceed with ICD therapy. Given the risk of harm, clinical practice guidelines suggest a decision-making process that not only considers the clinical evidence base, life expectancy, comorbid conditions, and procedural risks but also a patient's preferences.3 In this issue of JAMA Internal Medicine, Hauptman and colleagues4 provide an important and sobering snapshot of physician-patient conversations about ICD therapy in current practice. In focus groups, they found that patients believed they received little detailed information about the procedure and that decisions were made hastily, leading to significant misperceptions about the benefits and risks of the device. Recordings of clinical interactions between standardized patients and physicians illuminated the reasons behind patients' focus group responses. No physicians in the study discussed the prevalence of life-saving ICD shocks, inappropriate shocks, or the risk of death despite ICD shock, and during the discussions, technical medical terms were often used. Few interviews discussed the effect of ICD therapy on quality of life or long-term ICD risks, such as device recall, inappropriate shock, or depression, and those that did raise these topics minimized the risk. This study adds to the growing body of evidence that there is inadequate communication and little shared decision making occurring for situations such as ICD surgery. Conversations seem to be geared toward satisfying informed consent requirements and convincing the patient to undergo the surgical procedure. For example, when physicians discussed the benefit of the ICD, they used overly confident statements, such as “The ICD will prolong your life” or “The ICD will save your life.” With statements of such certainty, it is no wonder that patients wildly overestimated the benefits of the ICD. In addition, patients believed that physicians discussed the option of ICD in absolute terms, not allowing for much discussion about patient preferences. Although this study was small and conversations with standardized patients may differ from those with actual patients, the results illuminate a troubling situation in which patients are not only given incomplete information that is biased toward a particular viewpoint, but they are also not given an opportunity to consider and discuss their preferences for treatment. While these physicians likely believe that they have the patient's best interest in mind, their approach is paternalistic and does not achieve the goals of shared decision making and patient-centered care, that is, ensuring the patient's understanding of the risks, benefits, and alternatives; exploring his or her values; and actively engaging him or her in the decision-making process. Convincing physicians to engage in shared decision making is a complex undertaking, as physicians may believe that they are following clinical practice guidelines in strongly recommending an ICD to eligible patients.5 Because quality improvement efforts often focus on increasing physician adherence to guidelines and reward physicians for clinical processes or outcomes rather than high-quality decision making (eg, assessment of whether a mammogram was ordered for breast cancer screening rather than whether a conversation about the risks and benefits of breast cancer screening occurred), the message to physicians is that guideline adherence, rather than individualized care, is best. However, as Hauptman et al4 observed, an unintended consequence of blind application of the guidelines is that it promotes a paternalistic, rather than patient-centered, decision-making process. As a result, little opportunity exists for patients to engage in the decision-making process. In this situation, patients may be reluctant to share their preferences for fear of contradicting the physician and being labeled a “difficult patient.”6 In addition, physicians often view death as a failure, so there may also be psychological barriers to the concept of not providing a “life-saving” treatment. Time pressures, medicolegal worries, and a fee-for-service reimbursement system that values performing procedures over discussions with patients may also contribute to a medical culture that eschews shared decision making. It is little wonder, then, that elicitation of patient preferences is not the norm for discussions about an ICD and little shared decision making occurs in current practice. How do we remedy the seeming contradiction among quality care promoted by guideline adherence and quality care promoted by shared decision making and the tenets of patient-centered care? First, there is a need to rethink the concept of high-quality care to include care that is consistent with the preferences of an informed patient. Future guidelines, for example, should not only promote the role of shared decision making but also provide ways of measuring physician success at engaging patients in high-quality decision-making processes and reward physicians for doing so. This is particularly important in cases in which risk to benefit ratio is small, the evidence base is not robust, or the adverse effects may have a large influence on quality of life. There is evidence the culture may be beginning to change; recently, a new performance measure has been developed for ICDs promoting the rate of discussion about ICDs rather than the rate of ICD use.7 Physicians will not be penalized if a patient makes a different decision than the physician's recommendation. This type of measure development and implementation is critical for increasing shared decision making in practice in all areas of medicine. Furthermore, the incentives in the health care system require alignment to encourage high-quality decision making. For more shared decision making to occur, high-quality, unbiased information needs to be available to patients on a consistent basis. This could be accomplished, for example, by encouraging greater use of decision support interventions, such as decision aids, which have been linked with higher patient knowledge and decisions that are more consistent with patient preferences.8 Payment reform in this area should include provisions to reward shared decision making and, ideally, would also tie reimbursement for elective procedures to a decision that is consistent with the values of a well-informed patient. Finally, legislation that promotes shared decision making (eg, the Affordable Care Act) and gives a higher degree of protection from malpractice lawsuits for shared decision making (as in Washington state) can help create a medical culture in which active patient engagement and shared decision making are the norm rather than the exception. Given that ICD therapy is a serious and life-changing medical procedure, the highest priority for quality improvement in this area should be ensuring that the decision-making process is both evidence based and patient centered. Back to top Article Information Correspondence: Dr Lin, Division of General Internal Medicine and Phillip R. Lee Institute for Health Policy Studies, University of California, San Francisco, PO Box 0320, San Francisco, CA 94143 (glin@medicine.ucsf.edu). Published Online: February 18, 2013. doi:10.1001/jamainternmed.2013.4187 Conflict of Interest Disclosures: None reported. References 1. Bardy GH, Lee KL, Mark DB, et al; Sudden Cardiac Death in Heart Failure Trial (SCD-HeFT) Investigators. Amiodarone or an implantable cardioverter-defibrillator for congestive heart failure. N Engl J Med. 2005;352(3):225-23715659722PubMedGoogle ScholarCrossref 2. Mark DB, Anstrom KJ, Sun JL, et al; Sudden Cardiac Death in Heart Failure Trial Investigators. Quality of life with defibrillator therapy or amiodarone in heart failure. N Engl J Med. 2008;359(10):999-100818768943PubMedGoogle ScholarCrossref 3. Epstein AE, DiMarco JP, Ellenbogen KA, et al; American College of Cardiology/American Heart Association Task Force on Practice Guidelines (Writing Committee to Revise the ACC/AHA/NASPE 2002 Guideline Update for Implantation of Cardiac Pacemakers and Antiarrhythmia Devices); American Association for Thoracic Surgery; Society of Thoracic Surgeons. ACC/AHA/HRS 2008 Guidelines for Device-Based Therapy of Cardiac Rhythm Abnormalities: a report of the American College of Cardiology/American Heart Association Task Force on Practice Guidelines (Writing Committee to Revise the ACC/AHA/NASPE 2002 Guideline Update for Implantation of Cardiac Pacemakers and Antiarrhythmia Devices): developed in collaboration with the American Association for Thoracic Surgery and Society of Thoracic Surgeons [published correction appears in Circulation. 2009 Aug 4; 120(5):e34-e35]. Circulation. 2008;117(21):e350-e40818483207PubMedGoogle ScholarCrossref 4. Hauptman PJ, Chibnall JT, Guild C, Armbrecht ES. Patient perceptions, physician communication, and the implantable cardioverter-defibrilator [published online February 18, 2013]. JAMA Intern Med. 2013;173(7):571-577Google Scholar 5. Matlock DD, Nowels CT, Masoudi FA, et al. Patient and cardiologist perceptions on decision making for implantable cardioverter-defibrillators: a qualitative study. Pacing Clin Electrophysiol. 2011;34(12):1634-164421972983PubMedGoogle ScholarCrossref 6. Frosch DL, May SG, Rendle KA, Tietbohl C, Elwyn G. Authoritarian physicians and patients' fear of being labeled ‘difficult’ among key obstacles to shared decision making. Health Aff (Millwood). 2012;31(5):1030-103822566443PubMedGoogle ScholarCrossref 7. Bonow RO, Ganiats TG, Beam CT, et al; American College of Cardiology Foundation; American Heart Association Task Force on Performance Measures; American Medical Association-Physician Consortium for Performance Improvement. ACCF/AHA/AMA-PCPI 2011 performance measures for adults with heart failure: a report of the American College of Cardiology Foundation/American Heart Association Task Force on Performance Measures and the American Medical Association-Physician Consortium for Performance Improvement. Circulation. 2012;125(19):2382-240122528524PubMedGoogle ScholarCrossref 8. Stacey D, Bennett CL, Barry MJ, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2011;10(10):CD00143121975733PubMedGoogle Scholar

Journal

JAMA Internal MedicineAmerican Medical Association

Published: Apr 8, 2013

Keywords: physician-patient relations,implantable defibrillators,patient-centered care,perception,guidelines

References