EDITORIALS The Limits of Patient Autonomy in the Era of the Internet John Hansen-Flaschen Pulmonary, Allergy and Critical Care Division, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania
Medical ethicists recognize a broad range in the balance of participation between patients and clinicians in medical decision making (1). In the widely recommended middle ground, the patient is encouraged to solicit more than one opinion on the management of a consequential medical condition. The patient then chooses from among the options that are offered and negotiates operational details such as timing and venue. At the authoritarian end of the spectrum, a patient or proxy preferentially defers most judgments to the clinician, who is trusted to proceed in the best interests of the patient (2). At the libertarian extreme, the patient or proxy constructs the treatment plan, which is considered, approved, and implemented by a clinician or health care team. Perceived hazards at both ends of the spectrum are weighed against the benefits of fitting the decision-making process to the preferences of the patient. An article published in this month’s issue of AnnalsATS (pp. 1476–1479) tests the libertarian end of the spectrum of medical decision making in the era of the Internet from the perspective of a patient and his wife (3). The patient, a previously “fit and athletic” man, developed a persistent cough and nasal discharge at the age of 56 years. Nonrespiratory problems ensued, which were attributed, as they arose, by various clinicians to various unrelated conditions. Five years after onset of the cough, a multisystem constellation of signs and symptoms was recognized as yellow nail syndrome. In the article, authors Ken and Marsha Bauer recount their experience of Ken’s illness and their engagement in his medical management as he became progressively more impaired by the disease. When the diagnosis of yellow nail syndrome became apparent, the Bauers
turned to the Internet to supplement information on the disease offered by their clinicians. They learned that no disease-modifying treatment for the systemic manifestations of yellow nail syndrome has been shown to be effective. As Ken’s disease became increasingly burdensome, the Bauers reached deep into the Medline-indexed primary medical literature for additional information. There they discovered that conventional symptomatic treatments for the most troubling manifestations of yellow nail syndrome are not particularly effective and that some are fraught with hazards specific to rare lymphatic disorders. They also found anecdotal reports of interventions that seemed to help one or a small number of patients. Ken became disabled by rapid accumulation of pleural fluid despite weekly thoracentesis. His pulmonologist offered pleurodesis or thoracic duct interruption. The Bauers declined both procedures. Instead, they requested, and were granted, a trial of octreotide on the basis of two single case reports describing apparent benefit. Ken’s disease progressed despite the treatment. Accumulation of peripheral edema and ascites forced Ken into a wheelchair. During the ensuing years, additional therapeutic interventions were implemented on the basis of the Bauers’ ongoing surveillance of the medical literature. A trial of total parenteral nutrition was complicated by an episode of sepsis. Regular intravenous infusions of immune globulin and albumen were associated with a measured reduction in the volume of fluid that was drained over time from the patient’s pleural and peritoneal spaces. Ken adopted a fat-free diet. Guided by an isolated case report describing an association, the Bauers also
discovered that Ken’s thyroid function was low. He was started on supplemental thyroid hormone and testosterone. Subsequently, based on additional reading, Ken went to considerable effort to avoid exposure to titanium and titanium oxide. Readers cannot discern the fine details of the decision-making relationships between Ken and Marsha Bauer and Ken’s principal clinicians. However, it is apparent that the Bauers often took the lead in steering Ken’s treatment plan. Was this good medicine? How should other clinicians respond when confronted with similar requests to implement a series of nonstandard interventions for a progressive, incurable, potentially fatal disease? As practicing clinicians, Ken’s physicians were obligated to divide their professional time and effort among many needy patients. They may not have been able to remain continuously abreast of the medical and scientific literature on a rare disease that afflicted only one of their patients. The Bauer’s narrative illustrates the extent to which some patients and family members step up to overcome this information gap by assuming responsibility for researching the primary medical literature themselves (4). Their regular input of published articles into Ken’s medical care can be viewed as a constructive contribution that expanded diagnostic and treatment options, helped avoid disease-specific pitfalls of proposed therapeutic interventions, and provided the Bauers with satisfaction that they were aggressively fighting a devastating disease. Their ongoing literature research may also have helped Ken refine his weighing of the relative risks and benefits of interventions that came under consideration (5).
Correspondence and requests for reprints should be addressed to John Hansen-Flaschen, M.D., 873 Maloney Building, Hospital of the University of Pennsylvania, 3400 Spruce Street, Philadelphia, PA 19104. E-mail: [email protected] Ann Am Thorac Soc Vol 11, No 9, pp 1447–1448, Nov 2014 Copyright © 2014 by the American Thoracic Society DOI: 10.1513/AnnalsATS.201410-447ED Internet address: www.atsjournals.org
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EDITORIALS The Bauer’s relentless pursuit of novel treatments had other implications for Ken’s medical care. Over time, the Bauers effectively turned middle-ground, shared decision making upside down. Conventionally, the Bauers would have considered diagnostic and treatment options proposed by Ken’s physicians. Instead, the clinicians routinely considered treatment options proposed by the patient and his wife. Whereas ordinarily, patients can feel pressured to abide by a strongly recommended treatment proposal for fear of compromising a desired physician– patient relationship, Ken’s physicians may have felt pressured by the Bauers for the same reason. To the extent that Ken’s physicians might have become passive conduits for treatment plans generated by the Bauers, they may have opened the door to some of the dangers that are recognized when physicians treat themselves or close family members or friends (6). Assessments may be incomplete; complex conflicts of interest may arise; objectivity can be impaired, particularly for assessing outcomes of self-initiated treatments; and responses to adverse outcomes can be distorted by strong emotional reactions of guilt or shame. The hazards may be amplified when the dominant decision makers are not medical professionals who have learned from training and experience
the importance of applying scientific discipline and skepticism to assessing the medical literature. In addition, clinicians can be expected to assume a higher obligation than patients to consider cost– benefit relationships in medical decision making. The extent to which Internetinformed, patient-dominated medical decision making enhances or detracts from clinical outcomes has not been fully explored empirically; however, this emerging decision-making paradigm almost certainly complicates the role of clinicians in the decision-making process (3, 7, 8). I suggest that the identity of the person who proposes a medical treatment plan is considerably less important than the preservation of shared responsibility across all the core participants in the decisionmaking process. Patients are advised to gather information from a variety of sources, solicit input from family and friends, and carefully consider all available options. Family members should avoid the temptation to take over the decision-making authority of a loved one as he or she is diminished or threatened by the evolution of a progressive disease. When patients or family members seek to drive decision making, physicians are admonished not to shortcut the information gathering, consultations, and thoughtful deliberations that are
References 1 Clarke G, Hall RT, Rosencrance G. Physician-patient relations: no more models. Am J Bioeth 2004;4:W16–W19. 2 Levinson W, Kao A, Kuby A, Thisted RA. Not all patients want to participate in decision making. A national study of public preferences. J Gen Intern Med 2005;20:531–535. 3 Bauer M, Bauer K. “You Have a Syndrome”—Words You Don’t Want to Hear from a Doctor: Battling Yellow Nail Syndrome. Ann Am Thorac Soc 2014;11:1476–1479. 4 Ball MJ, Lillis J. E-health: transforming the physician/patient relationship. Int J Med Inform 2001;61:1–10.
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expected of clinicians in practice. We are licensed to interpose professional discipline into the application of diagnostic and treatment tools that are entrusted in us by law. Even at the libertarian extreme, we must actively and fully participate in decision making. Physicians must be willing to say no to inadvisable treatment requests, even including those that seem personally compelling under the most desperate circumstances. In their article, the Bauers report that they are grateful for the care Ken has received. They appreciate their opportunity to engage actively in Ken’s medical decision making and “to try cutting-edge medicine.” The libertarian end of the spectrum of medical decision making appears to have worked for them. Regrettably, a few days after his manuscript was accepted for publication, Ken Bauer died peacefully of his disease, with his wife Marsha at his side. It is our hope in publishing Ken’s narrative that readers will reflect on his courage in fighting yellow nail syndrome, and more generally, on the appropriate limits of the decision making prerogatives granted to some patients and family members in the empowering era of the internet. n Author disclosures are available with the text of this article at www.atsjournals.org.
5 Murray E, Lo B, Pollack L, Donelan K, Catania J, White M, Zapert K, Turner R. The impact of health information on the internet on the physician-patient relationship: patient perceptions. Arch Intern Med 2003;163:1727–1734. 6 Gendel MH, Brooks E, Early SR, Gundersen DC, Dubovsky SL, Dilts SL, Shore JH. Self-prescribed and other informal care provided by physicians: scope, correlations and implications. J Med Ethics 2012;38:294–298. 7 Lo B, Parham L. The impact of web 2.0 on the doctor-patient relationship. J Law Med Ethics 2010;38:17–26. 8 Wald HS, Dube CE, Anthony DC. Untangling the Web–the impact of Internet use on health care and the physician-patient relationship. Patient Educ Couns 2007;68:218–224.
AnnalsATS Volume 11 Number 9 | November 2014
Medical ethicists recognize a broad range in the balance of participation between patients and clinicians in medical decision making (1). In the widely recommended middle ground, the patient is encouraged to solicit more than one opinion on the management of a consequential medical condition. The patient then chooses from among the options that are offered and negotiates operational details such as timing and venue. At the authoritarian end of the spectrum, a patient or proxy preferentially defers most judgments to the clinician, who is trusted to proceed in the best interests of the patient (2). At the libertarian extreme, the patient or proxy constructs the treatment plan, which is considered, approved, and implemented by a clinician or health care team. Perceived hazards at both ends of the spectrum are weighed against the benefits of fitting the decision-making process to the preferences of the patient. An article published in this month’s issue of AnnalsATS (pp. 1476–1479) tests the libertarian end of the spectrum of medical decision making in the era of the Internet from the perspective of a patient and his wife (3). The patient, a previously “fit and athletic” man, developed a persistent cough and nasal discharge at the age of 56 years. Nonrespiratory problems ensued, which were attributed, as they arose, by various clinicians to various unrelated conditions. Five years after onset of the cough, a multisystem constellation of signs and symptoms was recognized as yellow nail syndrome. In the article, authors Ken and Marsha Bauer recount their experience of Ken’s illness and their engagement in his medical management as he became progressively more impaired by the disease. When the diagnosis of yellow nail syndrome became apparent, the Bauers
turned to the Internet to supplement information on the disease offered by their clinicians. They learned that no disease-modifying treatment for the systemic manifestations of yellow nail syndrome has been shown to be effective. As Ken’s disease became increasingly burdensome, the Bauers reached deep into the Medline-indexed primary medical literature for additional information. There they discovered that conventional symptomatic treatments for the most troubling manifestations of yellow nail syndrome are not particularly effective and that some are fraught with hazards specific to rare lymphatic disorders. They also found anecdotal reports of interventions that seemed to help one or a small number of patients. Ken became disabled by rapid accumulation of pleural fluid despite weekly thoracentesis. His pulmonologist offered pleurodesis or thoracic duct interruption. The Bauers declined both procedures. Instead, they requested, and were granted, a trial of octreotide on the basis of two single case reports describing apparent benefit. Ken’s disease progressed despite the treatment. Accumulation of peripheral edema and ascites forced Ken into a wheelchair. During the ensuing years, additional therapeutic interventions were implemented on the basis of the Bauers’ ongoing surveillance of the medical literature. A trial of total parenteral nutrition was complicated by an episode of sepsis. Regular intravenous infusions of immune globulin and albumen were associated with a measured reduction in the volume of fluid that was drained over time from the patient’s pleural and peritoneal spaces. Ken adopted a fat-free diet. Guided by an isolated case report describing an association, the Bauers also
discovered that Ken’s thyroid function was low. He was started on supplemental thyroid hormone and testosterone. Subsequently, based on additional reading, Ken went to considerable effort to avoid exposure to titanium and titanium oxide. Readers cannot discern the fine details of the decision-making relationships between Ken and Marsha Bauer and Ken’s principal clinicians. However, it is apparent that the Bauers often took the lead in steering Ken’s treatment plan. Was this good medicine? How should other clinicians respond when confronted with similar requests to implement a series of nonstandard interventions for a progressive, incurable, potentially fatal disease? As practicing clinicians, Ken’s physicians were obligated to divide their professional time and effort among many needy patients. They may not have been able to remain continuously abreast of the medical and scientific literature on a rare disease that afflicted only one of their patients. The Bauer’s narrative illustrates the extent to which some patients and family members step up to overcome this information gap by assuming responsibility for researching the primary medical literature themselves (4). Their regular input of published articles into Ken’s medical care can be viewed as a constructive contribution that expanded diagnostic and treatment options, helped avoid disease-specific pitfalls of proposed therapeutic interventions, and provided the Bauers with satisfaction that they were aggressively fighting a devastating disease. Their ongoing literature research may also have helped Ken refine his weighing of the relative risks and benefits of interventions that came under consideration (5).
Correspondence and requests for reprints should be addressed to John Hansen-Flaschen, M.D., 873 Maloney Building, Hospital of the University of Pennsylvania, 3400 Spruce Street, Philadelphia, PA 19104. E-mail: [email protected] Ann Am Thorac Soc Vol 11, No 9, pp 1447–1448, Nov 2014 Copyright © 2014 by the American Thoracic Society DOI: 10.1513/AnnalsATS.201410-447ED Internet address: www.atsjournals.org
Editorials
1447
EDITORIALS The Bauer’s relentless pursuit of novel treatments had other implications for Ken’s medical care. Over time, the Bauers effectively turned middle-ground, shared decision making upside down. Conventionally, the Bauers would have considered diagnostic and treatment options proposed by Ken’s physicians. Instead, the clinicians routinely considered treatment options proposed by the patient and his wife. Whereas ordinarily, patients can feel pressured to abide by a strongly recommended treatment proposal for fear of compromising a desired physician– patient relationship, Ken’s physicians may have felt pressured by the Bauers for the same reason. To the extent that Ken’s physicians might have become passive conduits for treatment plans generated by the Bauers, they may have opened the door to some of the dangers that are recognized when physicians treat themselves or close family members or friends (6). Assessments may be incomplete; complex conflicts of interest may arise; objectivity can be impaired, particularly for assessing outcomes of self-initiated treatments; and responses to adverse outcomes can be distorted by strong emotional reactions of guilt or shame. The hazards may be amplified when the dominant decision makers are not medical professionals who have learned from training and experience
the importance of applying scientific discipline and skepticism to assessing the medical literature. In addition, clinicians can be expected to assume a higher obligation than patients to consider cost– benefit relationships in medical decision making. The extent to which Internetinformed, patient-dominated medical decision making enhances or detracts from clinical outcomes has not been fully explored empirically; however, this emerging decision-making paradigm almost certainly complicates the role of clinicians in the decision-making process (3, 7, 8). I suggest that the identity of the person who proposes a medical treatment plan is considerably less important than the preservation of shared responsibility across all the core participants in the decisionmaking process. Patients are advised to gather information from a variety of sources, solicit input from family and friends, and carefully consider all available options. Family members should avoid the temptation to take over the decision-making authority of a loved one as he or she is diminished or threatened by the evolution of a progressive disease. When patients or family members seek to drive decision making, physicians are admonished not to shortcut the information gathering, consultations, and thoughtful deliberations that are
References 1 Clarke G, Hall RT, Rosencrance G. Physician-patient relations: no more models. Am J Bioeth 2004;4:W16–W19. 2 Levinson W, Kao A, Kuby A, Thisted RA. Not all patients want to participate in decision making. A national study of public preferences. J Gen Intern Med 2005;20:531–535. 3 Bauer M, Bauer K. “You Have a Syndrome”—Words You Don’t Want to Hear from a Doctor: Battling Yellow Nail Syndrome. Ann Am Thorac Soc 2014;11:1476–1479. 4 Ball MJ, Lillis J. E-health: transforming the physician/patient relationship. Int J Med Inform 2001;61:1–10.
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expected of clinicians in practice. We are licensed to interpose professional discipline into the application of diagnostic and treatment tools that are entrusted in us by law. Even at the libertarian extreme, we must actively and fully participate in decision making. Physicians must be willing to say no to inadvisable treatment requests, even including those that seem personally compelling under the most desperate circumstances. In their article, the Bauers report that they are grateful for the care Ken has received. They appreciate their opportunity to engage actively in Ken’s medical decision making and “to try cutting-edge medicine.” The libertarian end of the spectrum of medical decision making appears to have worked for them. Regrettably, a few days after his manuscript was accepted for publication, Ken Bauer died peacefully of his disease, with his wife Marsha at his side. It is our hope in publishing Ken’s narrative that readers will reflect on his courage in fighting yellow nail syndrome, and more generally, on the appropriate limits of the decision making prerogatives granted to some patients and family members in the empowering era of the internet. n Author disclosures are available with the text of this article at www.atsjournals.org.
5 Murray E, Lo B, Pollack L, Donelan K, Catania J, White M, Zapert K, Turner R. The impact of health information on the internet on the physician-patient relationship: patient perceptions. Arch Intern Med 2003;163:1727–1734. 6 Gendel MH, Brooks E, Early SR, Gundersen DC, Dubovsky SL, Dilts SL, Shore JH. Self-prescribed and other informal care provided by physicians: scope, correlations and implications. J Med Ethics 2012;38:294–298. 7 Lo B, Parham L. The impact of web 2.0 on the doctor-patient relationship. J Law Med Ethics 2010;38:17–26. 8 Wald HS, Dube CE, Anthony DC. Untangling the Web–the impact of Internet use on health care and the physician-patient relationship. Patient Educ Couns 2007;68:218–224.
AnnalsATS Volume 11 Number 9 | November 2014
