Incoming ethical issues for deep brain stimulation: when long-term treatment leads to a ‘new form of the disease’

Abstract

Deep brain stimulation (DBS) has been regarded as an efficient and safe treatment for Parkinson’s disease (PD) since being approved by the Food and Drug Administration (FDA) in 1997. It is estimated that more than 150 000 patients have been implanted, with a forecasted rapid increase in uptake with population ageing. Recent longitudinal follow-up studies have reported a significant increase in postoperative survival rates of patients with PD implanted with DBS as compared with those not implanted with DBS. Although DBS tends to increase life expectancy for most patients with PD, this medical benefit does not come without attendant negative consequences. For example, emerging forms of iatrogenic harms are sometimes induced—harms which were not initially expected when clinicians proposed neurosurgery and patients or their guardians consented to the treatment. We report and discuss the clinical case of a patient who was implanted with DBS more than 20 years ago (at the time of writing) and is now experiencing unexpected stages of PD. This case illustrates how extending the life span without improving quality of life may introduce a burden of harms for patients and families. As well, this case shows why we should prepare for the expanding numbers of PD-implanted patients experiencing a gain of longevity but with severe stages of disease leading to diminution in quality of life. This newly observed effect of DBS treatment requires us to explore ethical questions related to iatrogenic harms, informed consent, end of life and caregivers’ burden.

Deflating the Deep Brain Stimulation Causes Personality Changes Bubble: the Authors Reply

“…We greatly appreciate the various commentaries provided which assess the validity and significance of our initial arguments [1]. We hope this special issue will be a starting point for fostering a fruitful collaboration among neuroethicists from various disciplines, philosophers, medical personnel treating patients with neurological and/or psychiatric conditions, and patients and their caregivers [27][28][29][30][31][32][33][34][35][36][37][38][39][40][41][42][43][44][45].…”

Restoring vision using optogenetics without being blind to the risks

“…For instance, deep brain stimulation, which was an experimental invasive brain surgery in the 1990s targeting PD, now appears to be linked to an increase of life expectancy of PD's patients, according to recent longitudinal follow-up studies [21][22][23]. However, this longitudinal medical benefit does not come without attendant negative consequences, such as inducing iatrogenic harms that were not initially expected when the trials were first conducted [24,25]. Should optogenetics become an effective and safe treatment for neurodegenerative diseases, there is a strong chance it will impact life expectancy and disease trajectory, and therefore has a potential for inducing iatrogenic harms to patients.…”

Are we creating a new phenotype? Physiological barriers and ethical considerations in the treatment of hereditary transthyretin-amyloidosis

“…From an ethical standpoint, it is important to note that the risk of generating a new phenotype of a disease through treatment is not new, and has already been discussed in fields such as HIV, transplants [64], and, specifically in neurology, deep brain stimulation (DBS) for Parkinson's Disease (PD) [65], and new treatments for amyotrophic lateral sclerosis (ALS) [66]. In all of these cases, the benefits of the treatment are evident and have been amply documented, as are the risks that come with an increased lifespan.…”