Patient Perspectives on DBS and Personality

By Cynthia S. Kubu

This post is part of a series featuring authors who have received the Neuroethics R01 (Research Project Grants) supported by the NIH BRAIN Initiative. These research projects specifically address prominent ethical issues arising from emerging technologies and advancements in human brain research.

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My career has provided me with a very privileged perspective that is highly relevant to neuroethics – particularly clinical neuroethics. I am a clinical neuropsychologist; I assess patients with a variety of cognitive and neurobehavioral symptoms and assist with diagnosis, including diagnosis of dementia and other brain-based disorders. Throughout most of my career, I’ve worked as a member of functional neurosurgery teams engaged in highly innovative clinical trials (i.e., surgical epilepsy and deep brain stimulation [DBS]) teams).1-6 The clinical work I engage in daily addresses directly, in a highly personal and immediately relevant manner, some of the most pressing neuroethical issues in the literature such as the meaning of a diagnosis of dementia with respect to personhood or the impact of neuromodulation, particularly invasive devices, on sense of self, autonomy, and personality7 as well as questions related to risk/benefit, inclusion/exclusion, and patient expectations.8 At this point, there is a relative paucity of empirical data to help guide our decision-making around some of these important clinical neuroethical questions. The NIH has recognized this and, consequently, dedicated funding to empirically address key neuroethical questions relevant to the BRAIN initiative, specifically related to innovative technology and advances in brain science.

In my work with neurology patients, I often encounter patients and families who are afraid. They are afraid that a diagnosis of a neurodegenerative disorder inevitably means that they cease to exist as they have always been; “I’m no longer me; I can’t remember or reason” or “If it’s Alzheimer’s, I’m erased. I no longer exist”. Sometimes their fear is associated with the proposed treatment; a wife asks tentatively if her husband’s personality will change following DBS or a father seeks reassurance that his young adult daughter with dystonia will still be “her” following neurosurgery. Many of these fears are stoked by illustrations in the media depicting individuals with dementia who no longer know their name or loved ones. Some popular fictional accounts raise fears about loss of self in other important ways, particularly in the context of brain implants (e.g., cyborgs lacking a moral compass or the ability to relate). The common thread to these fears is a loss of those characteristic features that make each individual who he or she is – or what psychologists refer to as personality. One of the overarching goals of our empirical neuroethics work is to understand the relationship between personality (and related concepts) from the patients’ perspectives and various brain-based disorders and innovative treatments. Our research intentionally solicits patients’ and families’ insights, most often relying on the language they use to describe themselves and their goals. We rely on an interdisciplinary team to allow for a variety of perspectives from which to study these questions and employ empirical methods to answer our questions. All of these values are reflected in Dewey’s pragmatism.9

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A fundamental ethical tenet in medicine is bodily sovereignty, inherent in which is the concept of control. Gisquet10 argued that deep brain stimulation (DBS) can be a uniquely disruptive experience for patients due to the associated loss of control of the illness and loss of control of one’s life. She also asserted that neuromodulatory devices have the potential to change patients’ cognition, mood, and behavior - which are intimately related to the psychological concept of personality (i.e., characteristic patterns of thinking, feeling, and behaving).

Our previous NIH funded studies11-13 focused on the concept of control using patients with Parkinson’s disease (PD) who undergo DBS as a model. The results of our studies identified the reasons patients with PD seek DBS treatment and the extent to which DBS improves their control over their most important symptom and behavioral goals. These data demonstrate that existing clinical outcome measures do not comprehensively assess patients’ goals. Our findings document that DBS significantly improves patients’ perception of control over their symptoms, valued activities, and life.11 These results have very clear and practical implications for the development of outcome measures that reflect patients’ goals. We have argued that assessment of outcome should be multifaceted and intentionally include patients’ and families’ perspectives.12 In addition, for patient-centered care to be truly patient-centered, it should reflect patients’ perspectives and values and not simply patient-completed measures. The data also highlight the importance of an informed consent process that includes a systematic, clear assessment of patient functional goals beyond symptom relief. For example, a patient may state that her goal for DBS is to reduce her tremor with the intention of returning to a busy surgical practice which may not be a realistic expectation.11,13

Our data also indicate that patients’ rank ordered symptom and behavioral goals change over the course of DBS such that symptom or behavioral goals that were less highly ranked become more important over the course of the disease.13 Changes in the rank order of symptom goals were significantly related to improvements in symptom severity whereas the more subtle changes in behavioral goal rankings were unrelated to improvements following DBS surgery. These data raise interesting questions regarding the informed consent process and highlight the need for an ongoing informed consent discussion that extends beyond the pre-operative period and/or specifically includes discussion about how patients’ expectations and goals may change over the course of DBS. This question is particularly relevant given the shift in healthcare from exclusively focusing on patients’ symptoms to considerations regarding improved well-being and maximizing health. Second, DBS entails a long-term commitment to care for patients due to the need for regular programming and device maintenance. The patient’s ongoing reliance on the DBS team coupled with media portrayals of DBS as “miraculous” can contribute to confusion regarding what DBS can accomplish and the responsibilities of the DBS team. These ambiguities are highlighted even further in the context of a neurodegenerative disorder which may include ongoing symptoms that are not responsive to DBS.

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Our most recent NIH-funded work directly addresses one of the most vexing questions in neuroethics: does DBS result in undesired changes in personality?7 Our current study systematically assesses patients’ and family members’ most valued personality characteristics and the extent to which PD and DBS impact those important personality characteristics. Our goals are to identify whether PD and/or DBS treatment results in changes to an individuals’ personality, to determine if commonly used personality measures capture patient values fully, and to examine the consistency between patient and family member ratings. Our preliminary data suggest that existing personality measures may not completely capture the characteristics that are most important to patients and their families. In addition, these data highlight the importance of pro-social personality characteristics, such as kindness, love, and compassion, from the patients’ perspective. We have begun to extend this study to include patients with other neurodegenerative disorders. This effort seeks to examine the relationships between the underlying neurobiological mechanisms and the individually identified most important personality characteristics. These data have implications in the delivery of healthcare, the informed consent process, and philosophical and public discussions surrounding personality and identity. In addition, the importance patients’ place on personality characteristics associated with maintenance of relationships challenges the emphasis placed on individual autonomy in traditional bioethics and suggests that other frameworks, which emphasize relationships, may be more relevant and accurately reflect patients’ values and preferences.

These data will have implications for the large number of research participants enrolled in innovative DBS or other neuromodulation studies. The medically refractory nature of these severe illnesses results in a very high rate of disability and can contribute to the vulnerability of candidates. Providing strong informed consent during clinical research studies is an obligation to these research subjects. Our work provides important insights into participants’ values that can in turn improve communication and the informed consent process. In addition, our findings may influence industry, clinical and biomedical researchers in tailoring devices and research protocols to incorporate appropriate respect and understanding of populations who have traditionally not had a strong voice in protocol development.

Disclosures: Some of this work was supported by National Institute of Neurological Disorders and Stroke RC1NS068086 and the National Institute of Mental Health RO1MH114853. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institute of Neurological Disorders and Stroke, National Institute of Mental Health, or the National Institutes of Health.

References
  1.  Tellez-Zenteno JF, McLachlan R, Parrent AG, Kubu CS, Wiebe S. (2006). Electrical Stimulation in Mesial Temporal Lobe Epilepsy: Randomized Controlled Trials in Four Individual Patients. Neurology, 66(10), 1490-4. 
  2. Malone DA, Dougherty DD, Rezai AR, Carpenter LL, Friehs GM, Eskandar EN, Rauch SL, Rasmussen SA, Machado AG, Kubu CS, Tyrka AR, Price LH, Stypulkowski PH, Giftakis JE, Rise MT, Malloy PF, Salloway SP, Greenberg BD. (2009). Deep Brain Stimulation of the Ventral Capsule / Ventral Striatum for Treatment Resistant Depression. Biological Psychiatry, 65(4), 267-75. 
  3. Greenberg BD, Gabriels LA, Malone DA, Rezai AR, Friehs GM, Okun MS, Shapira NA, Foote KD, Cosyns PR, Kubu CS, Malloy PF, Salloway SP, Giftakis JE, Rise MR, Machado AG, Baker KB, Stypulkowski PH, Goodman WK, Rasmussen SA, Nuttin. BJ. (2010). Deep brain stimulation of the ventral internal capsule/ventral striatum for obsessive-compulsive disorder: Worldwide experience. Molecular Psychiatr, 15(1), 64-79. 
  4. Dougherty DD, Rezai AR, Carpenter LL, Howland RH, Bhati MT, Eskandar EN, Baltuch GH, Machado AD, Kondziolka D, Cusin C, Evans KC, Price LH, Jacobs K, Pandya M, Denko T, Tyrka AR, O’Reardon JP, Brelje T, Deckersbach T, Kubu C, Malone DA. (2015). A randomized sham-controlled trial of deep brain stimulation of the ventral capsule/ventral striatum for chronic treatment-resistant depression. Biological Psychiatry, 78, 240-8. 
  5. Lempka SF, Malone DA, Hu B, Baker KB, Wyant A, Ozinga JG, Plow EB, Pandya M, Kubu CS, Ford PJ, Machado AG. (2017). Randomized clinical trial of deep brain stimulation for poststroke pain. Annals of Neurology, 81(5), 653-663.
  6. Kubu CS. (2018). The role of the neuropsychologist on a deep brain stimulation movement disorders team. Archives of Clinical Neuropsychology,33(3), 365-374 
  7. Gilbert F., J. N. M. Viana, & C. Ineichen. (2018). Deflating the “DBS causes personality changes” bubble. Neuroethics, 19, 1-17. 
  8. Clausen, J. (2010). Ethical brain stimulation–neuroethics of deep brain stimulation in research and clinical practice. European Journal of Neuroscience, 32, 1152–1162. 
  9. Kubu CS, Ford PJ, Wilt JA, Merner A, Montpetite M, Zeigler J, Racine E. (in press). Pragmatism and the importance of interdisciplinary teams in investigating personality changes following DBS. Neuroethics 
  10. Gisquet, E. (2008). Cerebral implants and Parkinson’s disease: A unique form of biographical disruption? Social Science and Medicine, 67, 1847-1851.  
  11. Kubu CS, Cooper SE, Machado A, Frazier T, Vitek J, Ford PJ. (2017). Insights Gleaned by Measuring Patients’ Stated Goals for Deep Brain Stimulation: More than tremor. Neurology, 88(2), 124-130. PMID:27913696 
  12. Kubu CS, Ford PJ. (2012). Beyond Mere Symptom Relief in Deep Brain Stimulation: An Ethical Obligation for Multi-faceted Assessment of Outcome. American Journal of Bioethics, Neuroscience, 3(1), 44-49 
  13. Kubu CS, Frazier T, Cooper SE, Machado AG, Vitek J, Ford PJ. (2018). Informed consent and patients’ shifting goals for deep brain stimulation, Neurology 91(5), 472-8. 
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Cynthia S. Kubu, PhD, ABPP-CN is a Professor of Neurology at the Cleveland Clinic Lerner College of Medicine of Case Western Reserve University. She was elected a Fellow in the American Psychological Association in recognition of her contributions to the field and is board certified through the American Board of Professional Psychology in Clinical Neuropsychology. Dr. Kubu has been a key team member of several innovative DBS clinical trials and has helped establish international guidelines in the field of neuromodulation. Dr. Kubu’s research efforts have been funded by the NIH and foundation grants with a focus on neuroethics over the past 15 years. Along with her clinical and research interests, Dr. Kubu has a passion for faculty development, particularly women’s professional development, and has spearheaded educational and advocacy efforts around this theme at the institutional, regional, and national levels.


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Kuba, C. (2020). Patient Perspectives on DBS and Personality. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2020/02/patient-perspectives-on-dbs-and.html

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