Neuroethics

Common Consequences: The Case for Patient-to-Patient Education During Deep Brain Stimulation

Yuanmeng Zhang


Abstract

Deep brain stimulation (DBS) is an emerging technique for treating symptoms associated with disabling neurological conditions, including Parkinson’s disease, obsessive-compulsive disorder, and epilepsy [1]. Enabled by a small, pacemaker-like device that delivers targeted electrical stimulation directly to the brain, DBS has drastic effects on patient lives—both for the better and the worse. Current methods of patient education occasionally fail to clarify unrealistic expectations about the course of treatment and ease the burden of side effects that negatively impact patients’ daily lives. In light of the ongoing COVID-19 pandemic, online peer-to-peer platforms may be particularly appealing to correct patient expectations and speed adaptation to life after DBS.

 

The Relevance of Deep Brain Stimulation

Seemingly distant from public life, DBS may be closer to our own than we imagine. The United Nations has reported that nearly one in six individuals suffer from a neurological disorder in their lifetime [2]. From Parkinson’s disease to dementia, neurological disorders exert a significant impact on public lives. Different types of brain stimulation are in development to reduce this impact, making DBS more likely to enter your life or your relatives  in the near future. However,  this makes it all the more worrisome that current educational methods fail to prepare DBS patients for the full consequences of their treatment.

 

The Problems: Unrealistic Expectations and Unexpected Consequences

When patients decide to undergo surgery, they may be exposed to misinformation that leads to inadequate preparation for the consequences of DBS. While over 96% of patients receive DBS education from a Parkinson’s disease specialist and 61% from a neurosurgeon, 46% continue to self-educate on DBS procedures and effects using the internet and social media platforms after being referred [3]. Unlike academic publications, online news articles overwhelmingly report “miracle stories” about the latest advancements in brain stimulation. These articles naturally avoid a nuanced consideration of individual variation, both in terms of treatment success and presented side effects. Additionally, some patients may misinterpret DBS as a single surgery when it requires extensive clinical monitoring and device programming. In a recent study, such patient expectations were only discussed with clinicians in 48.3% of cases [4]. Consequently, unrealistic positive expectations are quite common in prospective patients—and likely to remain even in consultation with their neurologist and neurosurgeon.

Implanted patients should  be prepared to navigate unexpected consequences of DBS even if their treatment is a clinical success. Patients with Parkinson’s disease, for instance, have reported communication difficulties that accompany the reduction of resting tremor with DBS [5]. Unexpected side-effects such as stuttering, changes in auditory feedback, difficulties reading and writing, and mental fatigue are commonly responsible for disrupting patient social lives. On the other hand, patients without side-effects may find themselves burdened by their sudden normality —especially in cases of DBS for psychiatric disorders. Able to survey their lives from a different perspective, these patients must now confront feelings of uncertainty about the future and actively construct identities unencumbered by disability [6]. For both of these cases, then, patients must be prepared to develop coping strategies for unforeseen consequences of DBS.

 

Is There Anything to Be Done?

Some readers may feel that these points do not indicate that DBS education has truly failed. Correction of outlandish expectations is not a requirement of the informed consent procedure. To be adequately prepared for the consequences of their treatment, patients must be informed of the risks and benefits of DBS. The risk of unexpected complications is commonly stated. Such an argument would be correct. On the other hand, informed consent provides no guidance on how to address risks that become actual. This is especially apparent for consequences that have not been identified yet by the clinical community at large. In such cases, patients are left on their own  as they navigate life after DBS. Yet, there is a way to both correct patient expectations and help them cope with unexpected consequences: an online peer-to-peer network.

 

An Online Peer-to-Peer Interaction to Improve DBS Patient Experience

An online peer-to-peer network for DBS patients is a promising strategy to augment existing educational approaches and close the gap between treatment expectations and reality. Before deciding to undergo DBS, interaction with multiple peer mentors would allow for a more comprehensive sampling of the first-person experience and the correction of biases introduced by miracle stories. Patients also tend to be more comfortable expressing their hopes and concerns to peers, as well as heeding corrections made in clear and simple words. [7]. After implantation, a robust peer-to-peer platform should also continue to complement the expertise of healthcare professionals. Peers experiencing common consequences (e.g., speech issues) might be encouraged to share coping strategies with each other.  Thus, peer-to-peer education networks can alleviate the unnecessary suffering of DBS patients caused by unforeseen side effects and other issues such as the burden of normality.

Encouragingly, the deployment of an online patient-to-patient platform has become more feasible due to the ongoing global pandemic. Telehealth, the remote diagnosis and treatment of patients by means of telecommunications technology, is used to support patient-to-clinician communication has spread along because of  COVID-19 over the past several months. For instance, a recent article in the journal of the american medical informatics association indicated that many health systems are accommodating over 600 video or telephone visits a day [8]. Much current energy is directed towards online healthcare, yet efforts to include peer-to-peer Communication within existing telehealth platforms  for clinical purposes may encounter significant obstacles. These include the potential privacy issues and usability of aging patient populations. Such constraints will have to be addressed by any new peer-to-peer platforms deployed in healthcare settings.

 

Conclusion

Current methods of patient education fail to address unrealistic expectations before surgery and remain inadequate to ease the burden of unexpected consequences on daily life. A peer-to-peer platform for DBS patients would encourage patients to open up about their pre-surgery expectations and receive practical solutions to common and uncommon consequences of their DBS treatment. Though telehealth platforms are particularly appealing in the present, they’ll be no less important for patients moving forward. Clinical application of novel devices or target sites promise  to treat a wide array of debilitating neurological conditions—but may also produce unprecedented consequences on personality, cognitive abilities, and other defining components of our identity. The creation of a patient-to-patient education platform, then, would be of immense value to many of us who will consider DBS treatment for ourselves or our loved ones in the coming future.


References


  1. American Association of Neurosurgical Surgeons. Deep Brain Stimulation. https://www.aans.org/en/Patients/Neurosurgical-Conditions-and-Treatments/Deep-Brain-Stimulation. Retrieved: 15/07/2020.

  2. World Health Organization (WHO). (2007). Neurological Disorders: Public Health Challenges. UN. https://www.who.int/mental_health/neurology/neurodiso/en/. Retrieved: 01/07/2020.

  3. Bronstein J. M., Tagliati M., Alterman R. L. et al. (2011). Deep brain stimulation for Parkinson disease: an expert consensus and review of key issues. Archives of Neurology. vol. 68, no. 2, pp. 165–171, 2o11. Retrieved: 09/06/2020.

  4. Knoop, C.D., Kadish R., Hager K. et al. (2017) Bridging the Gaps in Patient Education for DBS Surgery in Parkinson’s Disease. https://experts.umn.edu/en/publications/bridging-the-gaps-in-patient-education-for-dbs-surgery-in-parkins. Retrieved: 07/06/2020.

  5. Ahlberg E., Laakso K., Hartelius L. (2011). Perceived Changes in Communication as an Effect of STN Surgery in Parkinson’s Disease: A Qualitative Interview Study. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3159130/. Retrieved: 07/06/2020.

  6. Bosanac P., Hamilton B.E., Lucak J. et al. (2018). Identity Challenges and “Burden of Normality” after DBS for Severe OCD: a Narrative Case Study. BMC Psychiatry. 18, no. 1. https://bmcpsychiatry.biomedcentral.com/articles/10.1186/s12888-018-1771-2. Retrieved: 10/06/2020.

  7. Carroll, Aaron E., and Frakt Austin. (09/07/2018) Sometimes Patients Simply Need Other Patients. New York Times. https://www.nytimes.com/2018/07/09/upshot/sometimes-patients-simply-need-other-patients.html. Retrieved: 03/07/2020.

  8. Wosik, Jedrek, Fudim Marat, Cameron Blake, Gellad Ziad F, Cho Alex, Phinney Donna, Curtis Simon, et al. Telehealth Transformation: COVID-19 and the Rise of Virtual Care. Journal of the American Medical Informatics Association 27, no. 6 (2020): 957–62. https://doi.org/10.1093/jamia/ocaa067. Retrieved: 02/07/2020.

Yuanmeng Zhang

Yuanmeng Zhang


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