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‘I'll Wear This as a Badge of Honour Because It's Made Me Better’: Patient and Caregiver Narrative Accounts of DBS for Depression

By Cassandra Thomson

This piece is part of a series of featured posts from the 2020 International Neuroethics Society Meeting. It is based on an abstract of the same title that won the award for the “Best Abstract.”

Image courtesy of Pixabay

Depression is estimated to affect 264 million individuals globally and is the leading cause of disability worldwide, with approximately 800,000 deaths by suicide occurring each year (James et al., 2018). While most individuals respond to existing treatments such as antidepressants, cognitive behavioural therapy and electroconvulsive therapy, a substantial proportion (20%) do not (Fava, 2003). Deep brain stimulation (DBS) is an established treatment for movement disorders such as Parkinson’s disease and has emerged as a potential novel treatment option in treatment-resistant depression. Initial proof-of-concept studies yielded promising results in this difficult-to-treat population (Malone et al., 2009; Mayberg et al., 2005). There have been numerous studies of DBS for depression since, with response rates (usually classified as a >50% reduction in primary outcome score) trending towards 50%. Research protocols across studies, however, have varied considerably (e.g., neuroanatomical target, inclusion criteria, participant clinical characteristics, stimulation parameters, and follow-up procedures) (Fins et al., 2017; Fitzgerald & Segrave, 2015). Most clinical outcome data has come from small, exploratory pilot studies or case series. Two of the largest randomised control trials of DBS for depression failed to replicate the striking antidepressant effect observed in earlier pilot studies (Dougherty et al., 2015; Holtzheimer et al., 2017). Perspectives on these disparate outcomes have formed the basis of numerous commentary pieces (Dobbs, 2018; Fitzgerald, 2016; Frieden, 2017; Schlaepfer, 2015). Some suggest that the structure and design of randomised control trials is incompatible with a complex intervention such as DBS for treatment-resistant depression, rather than the intervention itself being a failure (Fins et al., 2017). 

One aspect of DBS clinical trials for depression that has been queried is the outcome measures used to determine the intervention’s success. Primary outcome measures often used to establish treatment response are the Hamilton Rating Scale for Depression and Montgomery-Åsberg Depression Rating Scale. Both assess depression symptom severity, frequency and intensity, but some question whether these alone are adequate to comprehensively gauge the impact of DBS – particularly in individuals with such severe and refractory depression (Fins et al., 2017). What ‘well’ looks like and what is considered a ‘success’ is highly specific to the individual (Mayberg, 2018). Supplementing standard psychometric measures with narrative accounts can provide richer insight into the personal significance and meaning of outcomes and help develop more person-centred approaches to clinical care. Another aspect absent from DBS depression studies to-date is the perspective of caregivers. Partners and family members of DBS participants can be directly impacted by the trial commitments and outcomes (Thomson, Segrave, Gardner, & Carter, 2019). For this reason, our research explored the lived experiences of both DBS patients and caregivers, who are vital partners in the recovery process (Thomson, Segrave, Fitzgerald, et al., 2020).  

Within neuroethics, a common point of debate has been: does DBS alter an individual’s personality, sense of self, and identity? (Gilbert, Viaña, & Ineichen, 2018). In other DBS indications, including Parkinson’s disease and obsessive-compulsive disorder (OCD), qualitative studies have revealed important insights into how the intervention impacts the individual’s perceptions of themselves, their bodies, and their relationships. In Parkinson’s disease, patients and caregivers have reported both positive and negative personality changes emerging after DBS (e.g., more fun, open, talkative; more aggressive, selfish, quiet) (Lewis et al., 2015). When motor symptoms are substantially improved, some feel they can now express their true personality and that their old self has been restored (Thomson, Segrave, Racine, et al., 2020). Conversely, some patients have reported difficulty accepting the implanted electrical device psychologically and have experienced altered body image, while caregivers have reported feeling “lost” now that their partner no longer depends on them (Schüpbach et al., 2006). When unintended side-effects emerge (e.g., irritability, compulsive behaviours), spouses have reported feeling as though they are married to a different person (Mosley et al., 2019). In OCD, patients have described post-DBS changes as being more or less aligned with their perceived true self (de Haan, Rietveld, Stokhof, & Denys, 2017). Some expressed needing to get used to how they are now or needing to find out who they are without OCD. These studies have added much to the ongoing debate within neuroethics around how DBS impacts personality, identity and self; however, these concepts are yet to be examined in those with treatment-resistant depression. 

Image courtesy of Wikimedia Commons
The aim of our study (yet to be published) was to qualitatively examine how DBS for treatment-resistant depression impacts patient personality, self, and relationships, from the perspective of both patients and caregivers as they prepare for and adjust to life with DBS. Through interviews conducted before and after DBS, it was apparent that all were highly focused on whether the intervention would alleviate the patient’s depression or not. This had implications for how DBS was anticipated to, and in some cases did, influence self-concept. Most presumed that if the depression was alleviated, the person they had been or had known prior to onset of depression would re-emerge. Some also felt this would influence how they viewed the new device within their body e.g., with pride if depression was alleviated (“a badge of honour”) but disgust if not. Patients who did benefit from DBS felt reconnected with their pre-depression self, yet far from their ideal self. Caregivers observed familiar elements of their loved-one re-emerging but noted a persistence of qualities established during mental illness (e.g., self-focus, sympathy-seeking). While reductions in depression was considered broadly beneficial for relationships, the process of adjusting relationship dynamics created new challenges (e.g., renegotiating roles within the family). An issue all patients faced challenges with was recharging their DBS device. This time-consuming process was considered burdensome and impacted acceptance of the device. In depression, patient satisfaction with rechargeable DBS devices and user experience are greatly under-researched and an area of unmet need. 

Such findings provide a holistic understanding of the psychological impact of what is often considered a biological treatment. The narrative accounts allow personally significant benefits, as well as unexpected challenges, to be appreciated. It is important, however, to recognise the limited generalisability of such findings. Qualitative results must be considered in the specific context from which the data is derived (e.g., geographical location, sample demographics, implantation site, research protocol). Remaining mindful of this and not overgeneralising qualitative findings from small samples reduces the risk of a neuroethics bubble developing. 


References

  1. de Haan, S., Rietveld, E., Stokhof, M., & Denys, D. (2017). Becoming more oneself? Changes in personality following DBS treatment for psychiatric disorders: Experiences of OCD patients and general considerations. PLoS One, 12(4), e0175748. doi:10.1371/journal.pone.0175748
  2. Dobbs, D. (2018, 17/04/2018). Why a ‘lifesaving’ depression treatment didn’t pass clinical trials…but could still be a groundbreaking therapy.
  3. Dougherty, D. D., Rezai, A. R., Carpenter, L. L., Howland, R. H., Bhati, M. T., O'Reardon, J. P., . . . Malone, D. A., Jr. (2015). A Randomized Sham-Controlled Trial of Deep Brain Stimulation of the Ventral Capsule/Ventral Striatum for Chronic Treatment-Resistant Depression. Biol Psychiatry, 78(4), 240-248. doi:10.1016/j.biopsych.2014.11.023
  4. Fava, M. (2003). Diagnosis and definition of treatment-resistant depression. Biol Psychiatry, 53, 649-659. 
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  11. James, S. L., Abate, D., Abate, K. H., Abay, S. M., Abbafati, C., Abbasi, N., . . . Murray, C. J. L. (2018). Global, regional, and national incidence, prevalence, and years lived with disability for 354 diseases and injuries for 195 countries and territories, 1990–2017: a systematic analysis for the Global Burden of Disease Study 2017. The Lancet, 392(10159), 1789-1858. doi:10.1016/s0140-6736(18)32279-7
  12. Lewis, C. J., Maier, F., Horstkotter, N., Zywczok, A., Witt, K., Eggers, C., & Meyer et al., T. D. (2015). Subjectively perceived personality and mood changes associated with subthalamic stimulation in patients with Parkinson's disease. Psychological Medicine, 45(1), 73-85. doi:10.1017/S0033291714001081
  13. Malone, D. A., Jr., Dougherty, D. D., Rezai, A. R., Carpenter, L. L., Friehs, G. M., Eskandar, E. N., . . . Greenberg, B. D. (2009). Deep brain stimulation of the ventral capsule/ventral striatum for treatment-resistant depression. Biol Psychiatry, 65(4), 267-275. doi:10.1016/j.biopsych.2008.08.029
  14. Mayberg, H. S. (2018, July 2018). What is well? Reconciling First- and Third- Person Perspectives on Depression Recovery with DBS. Paper presented at the Federation of European Neuroscience Societies 11th FENS Forum of Neuroscience, Berlin, Germany.
  15. Mayberg, H. S., Lozano, A. M., Voon, V., McNeely, H. E., Seminowicz, D., Hamani, C., . . . Kennedy, S. H. (2005). Deep brain stimulation for treatment-resistant depression. Neuron, 45(5), 651-660. doi:10.1016/j.neuron.2005.02.014
  16. Mosley, P. E., Robinson, K., Coyne, T., Silburn, P., Breakspear, M., & Carter, A. (2019). ‘Woe Betides Anybody Who Tries to Turn me Down.’ A Qualitative Analysis of Neuropsychiatric Symptoms Following Subthalamic Deep Brain Stimulation for Parkinson’s Disease. Neuroethics. doi:10.1007/s12152-019-09410-x
  17. Schlaepfer, T. E. (2015). Deep Brain Stimulation for Major Depression—Steps on a Long and Winding Road. Biological Psychiatry, 78(4), 218-219. doi:10.1016/j.biopsych.2015.06.020
  18. Schüpbach, W. M., Gargiulo, M., Welter, M. L., Mallet, L., Behar, C., Houeto, J. L., . . . Agid, Y. (2006). Neurosurgery in Parkinson disease: a distressed mind in a repaired body? Neurology, 66(12), 1811-1816. doi:10.1212/01.wnl.0000234880.51322.16
  19. Thomson, C., Segrave, R., Gardner, J., & Carter, A. (2019). Patients’ Weighing of the Long-Term Risks and Consequences Associated With Deep Brain Stimulation in Treatment-Resistant Depression. AJOB Neuroscience, 9(4), 243-245. doi:10.1080/21507740.2018.1561542
  20. Thomson, C. J., Segrave, R. A., Fitzgerald, P. B., Richardson, K. E., Racine, E., & Carter, A. (2020, October 2020). ‘I’ll wear this as a badge of honour because it’s made me better’: Illness, self-concept and device embodiment in DBS for treatment-resistant depression. Paper presented at the International Neuroethics Society Annual Meeting, Virtual conference.
  21. Thomson, C. J., Segrave, R. A., Racine, E., Warren, N., Thyagarajan, D., & Carter, A. (2020). “He’s Back so I’m Not Alone”: The Impact of Deep Brain Stimulation on Personality, Self, and Relationships in Parkinson’s Disease. Qualitative Health Research, 30(14), 2217-2233. doi:10.1177/1049732320951144

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Dr. Cassandra Thomson is a registered psychologist and completed a doctorate of clinical psychology at the Turner Institute for Brain and Mental Health, Monash University. Her thesis examined psychosocial and ethical issues associated with deep brain stimulation from the perspective of patients, caregivers and clinicians. Her clinical interests include neurodegenerative diseases, acquired brain injury, mood and personality disorders, and caregiver wellbeing.


Want to cite this post?

Thomson, Cassandra. (2021). 'I'll Wear This as a Badge of Honour Because It's Made Me Better': Patient and Caregiver Narrative Accounts of DBS For Depression. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2021/02/ill-wear-this-as-badge-of-honour.html
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