Media and social stigma can influence the patient adaptation to neurotechnologies and DBS
By Daniela Ovadia
Daniela Ovadia is the co-director of the Neuroscience and Society Lab
in the Brain and Behavioral Sciences Department of the University of Pavia and is the scientific director of Agenzia Zoe.
Deep Brain Stimulation (DBS) is one of the oldest neuromodulation techniques; it was approved by the FDA in 1997 for the treatment of essential tremor, and a few years later, in 2002, the indication was extended to the treatment of Parkinson’s disease and dystonia (in 2003). In 2009 a new era for DBS started when the FDA also approved it as a therapy for obsessive-compulsive disorder. Some patients experienced a very good outcome, while others were less
lucky and experienced side effects such as cognitive, behavioral or
psychosocial impairments. DBS is now a common procedure for the
treatment of many motor and behavioral impairments.
As certain patients associations and civil liberties groups claimed that psychosurgery was back, and with it the social control on the patient’s mind, the media became interested in the topic. With the aim to protect the use of a promising technology, scientists and researchers also became involved in the field.
In this recently published article, authors Mecacci and Haselager focus their attention on the conceptual framework influencing the lack of compliance (or maladaptation, as they define it) to DBS implants. They identify two key elements determining patients expectations toward the effects of this neurodevice: mind-brain dualism (or, at the opposite, a braincentric point of view on human nature and behavior) and a hype in presenting potential benefits of new neurotechnologies. Both can modulate the patient’s expectations and influence the clinical and adverse effects of the device. But even if the authors cite the role of the media in shaping the public perception of new brain technologies and in building common knowledge about them, Mecacci and Haselager don’t delve deeply into the topic.
The scientific literature published on this issue offers an interesting point of view on the cultural determinants of biological responses to treatments. While reviewing 1,256 articles on different neurotechnologies published from 1994 to 2005 in the UK and USA lay press, Eric Racine noticed that 68% of the articles presented clinical or non-clinical benefits, while only 28% presented at least one scientific or ethical issue. Neurostimulation (as DBS) was depicted with a more variable tone of voice than other neurotechniques such as fMRI. The articles on DBS offered a broader point of view with many more “grey areas” often related to an implicit or explicit analogy with old psychosurgery techniques. The knowledge of the unfortunate outcomes of previous psychosurgical techniques, such as transorbital lobotomies, seems to be quite common among the lay public, and this appears to influence the media approach to DBS, at least when psychiatry use is discussed. More interestingly, many articles on DBS depict the brain under the framework of neuroessentialism and a combination of biological reductionism and enthusiasm for neuroscience research; the brain is the self-defining essence of a person, a sort of secular equivalent to the soul. Fixing the brain, we also fix the mood and the personality of the patient. Neuroessentialism can easily induce hype and excessive expectations regarding the effects of the brain implants, and can create a cognitive dissonance with the common instinctive adherence to dualism, as described by Mecacci and Haselager. Under these premises, maladaptation can be interpreted as disappointment in the results obtained after surgery, which are not as good and stable as imagined.
The neuroessentialist description of how the brain works evokes the idea of a machine that can easily be repaired, while the fluctuation in motor performances and mood after DBS implants can be perceived as a confirmation of the dualistic nature of the human being. The contrast between what was imagined and reality deeply influences the adaptation of patients to the device. This explanation fits perfectly with the so called hype cycle for new technologies, which starts with a peak of inflated expectations, followed by disillusionment, and ends in a plateau of adaptation to reality. Even if the hype cycle has been conceived to describe the creative process of researchers in science, it can be applied to patients dealing with new neurotechnologies where pros and cons are discovered on a daily basis.
There is a strong relationship between scientists’ perception of the opportunity offered by a new treatment and the expectations of the patient, and the hype is often generated by the scientists themselves. Many studies on the news cycle, from the scientific paper to the press release by scientific institutions to the final destination (the general media, passing through the desk of the journalists) demonstrate that the first source of the media are the scientists and the press releases. The media follow the “feelings” of their sources, which are not always balanced and neutral. Patients educate themselves and build their expectations in health issues from non specific sources, especially television, newspapers and internet. They are influenced by the media, who are the first source of their knowledge. In a previous work I considered the way the media reports on ethical issues related to DBS and the responsibility that journalists and scientists should feel toward the patients who have to decide if and when to undergo DBS. Very few articles discuss or mention the opportunity to use DBS in a vulnerable population such as Alzheimer’s patients (for memory enhancement) or psychiatric patients (such as in obsessive-compulsive disorders or Tourette syndrome). By supporting medical and scientific innovations without dealing with ethical issues, the media induce implicit ethical approval without an appropriate discussion both to society and to scientific community. This support also influences the selection of patient candidates for brain implantation.
The establishment of common criteria for patient selection in DBS is one of the main issues debated by the scientific community. In a review on ethical and social issues related to DBS by Bell and colleagues, the authors affirm this while analyzing the medical literature on this topic:
In a study on a sample of 36 patients who underwent DBS surgery for motor or psychiatric diseases, 2 patients reported unfavorable opinions on the outcome (5.5%) despite a significant improvement measured with proper clinical evaluation scales. The authors explain these negative judgments with an excess of expectations from the patients regarding the magnitude of the treatment effect. This result is consistent with previous studies on the outcomes of DBS that demonstrate that not only do a patient's expectations influence the satisfaction for the treatment, but the opinion of the caregivers do as well.
In patients affected by Tourette syndrome, the desire to avoid the social stigma related with the symptoms can also influence the effects of DBS. Servillo and colleagues report the case of a 36-year-old woman driven to continuous modifications of the stimulator settings by her mother who wasn’t satisfied with the results. She wanted her daughter completely freed from tourettic behavioral symptoms to avoid the social stigma, but not to relieve the symptoms.
The role of stigma in inducing the patient to choose a surgical treatment with DBS, especially in psychiatric conditions, has been highlighted also by Schlaepfer and Fins, who stressed the role of both media and doctors in shaping patient expectations.
More research is needed on the interaction between the cultural and conceptual framework of the patients towards new neurotechniques and the social determinants of this interaction. The hype cycle, nourished both by the media and scientists, is probably one of the most powerful. Ethicists should be aware of the way this cycle can determine the outcome of a treatment, but it can be modulated by a good procedure to obtain an informed consent.
References
Bell, E. et al. 2009. Preparing the ethical future of deep brain stimulation. Surgical Neurology 72: 577-586.
Clausen, J. 2010. Ethical brain stimulation – neuroethics of deep brain stimulation in research and clinical practice. European Journal of Neuroscience 32: 1152–1162.
Gilbert, F. and Ovadia, D. 2011. Deep brain stimulation in the media: over-optimistic portrayals call for a new strategy involving journalists and scientists in ethical debate. Frontiers in Integrative Neuroscience 10(5):16
Racine, E. et al. 2005. fMRI in the public eye. Nature Reviews Neuroscience 6(2): 159–164.
Racine, E. et al. 2010. Contemporary neuroscience in the media. Social Science and Medicine 71(4): 725-733.
Schlaepfer, T. E., and Fins, J. 2010. Deep brain stimulation and the neuroethics of responsible publishing, when one is not enough. JAMA 303: 775–776.
Servello D., et al. 2010. Long-term, post-deep brain stimulation management of a series of 36 patients affected with refractory gilles de la tourette syndrome. Neuromodulation 13(3): 187-194.
Tir, M. et al. 2007. Exhaustive, one-year follow-up of subthalamic nucleus deep brain stimulation in a large, single-center cohort of parkinsonian patients. Neurosurgery 61(2): 297-305.
van Lente, H. et al.2013. Comparing technological hype cycles: Towards a theory. Technological Forecasting and Social Change 80(8): 1615-1628.
Woloshin, S. et al. 2009. Press releases from academic medical centers: not so academic? Annals of Internal Medicine 150(9): 613-618.
Want to cite this post?
Ovadia, D. (2014). Media and social stigma can influence the patient adaptation to neurotechnologies and DBS. The Neuroethics Blog. Retrieved on
, from http://www.theneuroethicsblog.com/2014/12/media-and-social-stigma-can-influence.html
Daniela Ovadia is the co-director of the Neuroscience and Society Labin the Brain and Behavioral Sciences Department of the University of Pavia and is the scientific director of Agenzia Zoe.
Deep Brain Stimulation (DBS) is one of the oldest neuromodulation techniques; it was approved by the FDA in 1997 for the treatment of essential tremor, and a few years later, in 2002, the indication was extended to the treatment of Parkinson’s disease and dystonia (in 2003). In 2009 a new era for DBS started when the FDA also approved it as a therapy for obsessive-compulsive disorder. Some patients experienced a very good outcome, while others were less
lucky and experienced side effects such as cognitive, behavioral or
psychosocial impairments. DBS is now a common procedure for the
treatment of many motor and behavioral impairments.
As certain patients associations and civil liberties groups claimed that psychosurgery was back, and with it the social control on the patient’s mind, the media became interested in the topic. With the aim to protect the use of a promising technology, scientists and researchers also became involved in the field.
In this recently published article, authors Mecacci and Haselager focus their attention on the conceptual framework influencing the lack of compliance (or maladaptation, as they define it) to DBS implants. They identify two key elements determining patients expectations toward the effects of this neurodevice: mind-brain dualism (or, at the opposite, a braincentric point of view on human nature and behavior) and a hype in presenting potential benefits of new neurotechnologies. Both can modulate the patient’s expectations and influence the clinical and adverse effects of the device. But even if the authors cite the role of the media in shaping the public perception of new brain technologies and in building common knowledge about them, Mecacci and Haselager don’t delve deeply into the topic.
The scientific literature published on this issue offers an interesting point of view on the cultural determinants of biological responses to treatments. While reviewing 1,256 articles on different neurotechnologies published from 1994 to 2005 in the UK and USA lay press, Eric Racine noticed that 68% of the articles presented clinical or non-clinical benefits, while only 28% presented at least one scientific or ethical issue. Neurostimulation (as DBS) was depicted with a more variable tone of voice than other neurotechniques such as fMRI. The articles on DBS offered a broader point of view with many more “grey areas” often related to an implicit or explicit analogy with old psychosurgery techniques. The knowledge of the unfortunate outcomes of previous psychosurgical techniques, such as transorbital lobotomies, seems to be quite common among the lay public, and this appears to influence the media approach to DBS, at least when psychiatry use is discussed. More interestingly, many articles on DBS depict the brain under the framework of neuroessentialism and a combination of biological reductionism and enthusiasm for neuroscience research; the brain is the self-defining essence of a person, a sort of secular equivalent to the soul. Fixing the brain, we also fix the mood and the personality of the patient. Neuroessentialism can easily induce hype and excessive expectations regarding the effects of the brain implants, and can create a cognitive dissonance with the common instinctive adherence to dualism, as described by Mecacci and Haselager. Under these premises, maladaptation can be interpreted as disappointment in the results obtained after surgery, which are not as good and stable as imagined.
The neuroessentialist description of how the brain works evokes the idea of a machine that can easily be repaired, while the fluctuation in motor performances and mood after DBS implants can be perceived as a confirmation of the dualistic nature of the human being. The contrast between what was imagined and reality deeply influences the adaptation of patients to the device. This explanation fits perfectly with the so called hype cycle for new technologies, which starts with a peak of inflated expectations, followed by disillusionment, and ends in a plateau of adaptation to reality. Even if the hype cycle has been conceived to describe the creative process of researchers in science, it can be applied to patients dealing with new neurotechnologies where pros and cons are discovered on a daily basis.
 |
| From The Economist |
There is a strong relationship between scientists’ perception of the opportunity offered by a new treatment and the expectations of the patient, and the hype is often generated by the scientists themselves. Many studies on the news cycle, from the scientific paper to the press release by scientific institutions to the final destination (the general media, passing through the desk of the journalists) demonstrate that the first source of the media are the scientists and the press releases. The media follow the “feelings” of their sources, which are not always balanced and neutral. Patients educate themselves and build their expectations in health issues from non specific sources, especially television, newspapers and internet. They are influenced by the media, who are the first source of their knowledge. In a previous work I considered the way the media reports on ethical issues related to DBS and the responsibility that journalists and scientists should feel toward the patients who have to decide if and when to undergo DBS. Very few articles discuss or mention the opportunity to use DBS in a vulnerable population such as Alzheimer’s patients (for memory enhancement) or psychiatric patients (such as in obsessive-compulsive disorders or Tourette syndrome). By supporting medical and scientific innovations without dealing with ethical issues, the media induce implicit ethical approval without an appropriate discussion both to society and to scientific community. This support also influences the selection of patient candidates for brain implantation.
The establishment of common criteria for patient selection in DBS is one of the main issues debated by the scientific community. In a review on ethical and social issues related to DBS by Bell and colleagues, the authors affirm this while analyzing the medical literature on this topic:
Important ethical and social challenges exist in the current and extending practice of DBS, notably in patient selection, informed consent, resource allocation, and in public understanding. These challenges are likely to be amplified if emerging uses of DBS in psychiatry are approved.
In a study on a sample of 36 patients who underwent DBS surgery for motor or psychiatric diseases, 2 patients reported unfavorable opinions on the outcome (5.5%) despite a significant improvement measured with proper clinical evaluation scales. The authors explain these negative judgments with an excess of expectations from the patients regarding the magnitude of the treatment effect. This result is consistent with previous studies on the outcomes of DBS that demonstrate that not only do a patient's expectations influence the satisfaction for the treatment, but the opinion of the caregivers do as well.
In patients affected by Tourette syndrome, the desire to avoid the social stigma related with the symptoms can also influence the effects of DBS. Servillo and colleagues report the case of a 36-year-old woman driven to continuous modifications of the stimulator settings by her mother who wasn’t satisfied with the results. She wanted her daughter completely freed from tourettic behavioral symptoms to avoid the social stigma, but not to relieve the symptoms.
The role of stigma in inducing the patient to choose a surgical treatment with DBS, especially in psychiatric conditions, has been highlighted also by Schlaepfer and Fins, who stressed the role of both media and doctors in shaping patient expectations.
More research is needed on the interaction between the cultural and conceptual framework of the patients towards new neurotechniques and the social determinants of this interaction. The hype cycle, nourished both by the media and scientists, is probably one of the most powerful. Ethicists should be aware of the way this cycle can determine the outcome of a treatment, but it can be modulated by a good procedure to obtain an informed consent.
References
Bell, E. et al. 2009. Preparing the ethical future of deep brain stimulation. Surgical Neurology 72: 577-586.
Clausen, J. 2010. Ethical brain stimulation – neuroethics of deep brain stimulation in research and clinical practice. European Journal of Neuroscience 32: 1152–1162.
Gilbert, F. and Ovadia, D. 2011. Deep brain stimulation in the media: over-optimistic portrayals call for a new strategy involving journalists and scientists in ethical debate. Frontiers in Integrative Neuroscience 10(5):16
Racine, E. et al. 2005. fMRI in the public eye. Nature Reviews Neuroscience 6(2): 159–164.
Racine, E. et al. 2010. Contemporary neuroscience in the media. Social Science and Medicine 71(4): 725-733.
Schlaepfer, T. E., and Fins, J. 2010. Deep brain stimulation and the neuroethics of responsible publishing, when one is not enough. JAMA 303: 775–776.
Servello D., et al. 2010. Long-term, post-deep brain stimulation management of a series of 36 patients affected with refractory gilles de la tourette syndrome. Neuromodulation 13(3): 187-194.
Tir, M. et al. 2007. Exhaustive, one-year follow-up of subthalamic nucleus deep brain stimulation in a large, single-center cohort of parkinsonian patients. Neurosurgery 61(2): 297-305.
van Lente, H. et al.2013. Comparing technological hype cycles: Towards a theory. Technological Forecasting and Social Change 80(8): 1615-1628.
Woloshin, S. et al. 2009. Press releases from academic medical centers: not so academic? Annals of Internal Medicine 150(9): 613-618.
Want to cite this post?
Ovadia, D. (2014). Media and social stigma can influence the patient adaptation to neurotechnologies and DBS. The Neuroethics Blog. Retrieved on
, from http://www.theneuroethicsblog.com/2014/12/media-and-social-stigma-can-influence.html
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