For this journal club, we discussed ethical challenges in neuropsychological testing and care for patients with Down syndrome, nearly 100 percent of whom develop Alzheimer’s disease neuropathological findings by adulthood. Melanie Stephens, a neuropsychologist, directed a conversation informed by two articles: “Association of dementia with mortality among adults with Down Syndrome older than 35 years” by Rosalyn Hithersay et al. (JAMA Neurology, 2019) and “Enduring and emerging challenges of informed consent” by Christine Grady (New England Journal of Medicine, 2015).
Alzheimer’s disease is pervasive among Down syndrome patients, likely due to triplication of the amyloid precursor protein (APP) gene on chromosome 21 in the setting of increasing life expectancy. As individuals with DS live longer, they transition from pediatrics to primary care, where physicians are unfamiliar with managing adults with Down syndrome. Cognitive evaluation resources for older patients at risk of developing Alzheimer’s disease are limited in availability and fraught with practical and ethical concerns. We considered the feasibility of adjusting a traditionally 6-8 hour, single-day neuropsychological exam to accommodate patients with developmental disabilities and heightened distractibility. Would exam modifications intended to encourage patient cooperation, such as introducing snack breaks or playing a patient’s favorite music, objectionably influence patients’ decision-making or promote justice by protecting patients’ right to an evaluation? We compared such approaches to public health efforts to design environments that nudge people toward making healthy choices, like taking the stairs over the elevator. In light of the lack of testing norms for Alzheimer’s disease specifically in patients with Down syndrome, we also considered whether such an exam and existing metrics can produce meaningful data on patients’ cognitive abilities.
We responded to anecdotes shared by Melanie and others about conflicting wishes of patients and caregivers regarding neuropsychological examination and research participation. Concerning patients’ capacity to consent, we supported respecting the decisions of those who currently have capacity, promoting the values of those who previously had capacity, and acting in the best interests of those who never had capacity. It is unrealistic, however, for a neuropsychologist to thoroughly understand a patient’s unique values given the limited access to medical history and the brevity of the pre-evaluation interview. Despite the difficulties of the evaluation process, we acknowledged the importance of disclosing signs of cognitive decline to patients to inform advance care planning. In recognition of stigma against individuals with Down syndrome (e.g., denial of dental care or medication on the basis of their presumed inability to manage bills and prescriptions), we stressed the urgent need for Alzheimer’s disease research in Down syndrome populations.
Maya Katz, Assistant Professor of Neurology at the UCSF Movement Disorders and Neuromodulation Center, led a works-in-progress session on her research about the Parkinson’s disease (PD) “mortality myth” and the benefits of incorporating palliative care into PD management. Joined by social workers, neurologists, and palliative care specialists, we voiced our perspectives on misconceptions about PD mortality and best practices for end-of-life conversations.
The PD “mortality myth” refers to the misleading, yet ubiquitous characterization of PD as a chronic disease that does not effect life expectancy, rather than as a terminal, neurodegenerative illness. We recognized the unfortunate perpetuation of this myth within cultural and clinical settings alike, manifesting in inaccurate news media coverage and inadequate end-of-life planning for PD patients. Cause-of-death statistics show that that PD side-effects, such as aspiration pneumonia and sudden falls, account for the majority of PD deaths. We then discussed the myth’s positive-feedback-loop quality, its influence on the production of information that further supports its validity. Informed by anecdotes of frustrated caregivers and the disproportionately high rate of PD hospital deaths, we advocated for palliative care strategies as a means of reducing caregiver burden and improving patient quality of life. Additionally, we called for a patient-centered approach to diagnosis delivery, as well as ongoing conversations about prognosis that address disease heterogeneity, cognitive decline, and potential comorbidities.
UCSF neurologist and interventional pain specialist, Prasad Shirvalkar, facilitated a case discussion about the ethical dilemmas he and his team encounter in their ongoing research on adaptive deep brain stimulation (aDBS) for chronic pain. Informed by the 2016 Neuromodulation article, “Unexpected complications of novel deep brain stimulation treatments: ethical issues and clinical recommendations” by Hannah Maslen et al., we deliberated how to obtain consent for unintended side-effects, and how to manage the investigator-participant relationship in highly collaborative, small-n trials.
Prasad’s study aims to identify new targets for chronic pain and develop a more personalized brain stimulation paradigm. However, stimulation of cortical targets at high intensities, which may be required for pain relief, increases seizure risk. The potential for this adverse side-effect complicates various elements of the consent process, from capacity assessment to weighing benefits and costs. In seminar, we discussed novel models of informed consent including teach-back and teach-to-goal strategies to assess participants’ comprehension of risks and disrupt the traditional doctor-patient social script, whereby patients accept doctors’ recommendations without question. We also recognized that participants’ ability to vividly imagine their lives with seizures may be skewed by their lack of having personally experienced a seizure, and/or their present focus on alleviating their chronic pain.
The nature of this research setting, where patients are naturally focused on potential therapeutic benefits of aDBS and often view research staff as care team members, muddles the distinction between researcher and clinician. We shared our views on how researchers ought to navigate interactions with participants, particularly in response to medical complaints and requests for non-immediate clinical services. Where a legal perspective might call for a rigid study protocol and emphasize the importance of terminological distinctions (e.g., “participant” rather than “patient”), an academic outlook might tolerate some blurring of the researcher-clinician boundary depending on the research question and design. We recognized the value of developing rapport with research participants while simultaneously upholding professionalism by judging when to redirect them to appropriate clinical resources.
Today we hosted an interdisciplinary conversation led by Dan Dohan, a sociologist of medicine, and Kate Rankin, a neuropsychologist and researcher of socioemotional function in the brain. We considered links as well as gaps between the traditional social sciences (such as sociology, anthropology, political science and economics) and the growing field of social neuroscience, examining different discipinary perspectives on a recent review in social neuroscience, “The Emerging Social Neuroscience of Justice Motivation” by Jean Decety and Keith J. Yoder.
Dan observed that social scientists and social neuroscientists, despite their shared interest in social phenomena, are largely interested in two very different aspects: social neuroscience being concerned primarily with workings “inside the head” and the social sciences being concerned primarily with interactions among people. Furthermore, some of the lines of evidence considered in the paper (such as behaviors of macaques and cleaner fish, or the expectations of infants) may have mechanistic relevance for describing the evolutionary or developmental origins of prosocial motivation, but are not straightforwardly applicable to political or cultural understandings of justice. We also considered the worry that different terms may be used for different referents in different contexts, as well as more general transdisciplinary tensions over issues like funding and recognition. In addition, in reviewing the history of other domains in which cognitive neuroscience has been applied to examine behaviors originally addressed in other fields (e.g., neuroeconomics, the neurobiology of language, and the neuroscience of moral reasoning), we noted that cognitive neuroscience has often built upon and borrowed from explanatory frameworks developed in older disciplines without radically altering how those original fields (e.g., economics, linguistics, moral theory) conduct their work.
In a journal club led by Jalayne Arias, Renaud La Joie, and Jen Yokoyama, we discussed consent for data sharing within dementia research, focusing on arguments presented in Consent recommendations for research and international data sharing involving persons with dementia by Adrian Thorogood et al.
Jalayne initially provided an historical review of the Bermuda Policies, the Henrietta Lacks case, and Havasupai Tribe of Havasupai Reservation v. Arizona Board of Regents. With this background in mind, some felt that the article missed an opportunity to address issues unique to patients with dementia and to data sharing in a research context. Rather than describing the complexity of capacity assessment for individuals with varying degrees of cognitive impairment, the difficulty of balancing duty to protect patients from exploitation and duty to respect patients’ right to participate in research, or the barrier to international research collaboration presented by inconsistent data sharing laws, the article addresses vulnerable populations and consenting challenges in general. Members of our group shared personal experiences addressing contradictory patient and caregiver claims, managing double de-identified patient data, and hesitating to share data within a competitive research environment. It can be a challenge to clarify the concept of data sharing so as to accurately inform patients and debunk slippery slope arguments about what researchers can and cannot achieve with an individual’s data.
Reflecting on public mistrust of biomedical research as a result of infamous studies, like the Tuskegee syphilis experiment, we emphasized our responsibility to cultivate a positive relationship between research participants and UCSF as an institution. We also recognized the public’s call for penalizing researchers who violate data sharing policies beyond academic black listing. Regarding research involving disenfranchised or stereotyped groups, we deliberated the possibility of including a community representative within the consent committee.
October 22, 2018 - Artificial companions for older adults with cognitive impairment (Elena Portacolone)
October 8, 2018 - Consent and recruitment in neurophysiology studies (Joncarmen Mergenthaler)
September 24, 2018 - Personality changes in deep brain stimulation (Tobias Häusermann)
September 10, 2018 - Experimentation in human brain model systems (Galen Dods)
August 27, 2018 - Position paper on dementia care ethics (Winston Chiong)
July 9, 2018 - Using genetic ancestry sites for criminal investigations (Jalayne Arias, Joanne Taylor, Jen Yokoyama & Jamie Fong)
June 25, 2018 - Capacity to marry and to consent to sex in dementia (Joanna Hellmuth & Mahnoor Allawala)
June 11, 2018 - Professionalized intimacy – care in the dementia village (Tobias Häusermann)
May 14, 2018 - Opioids in elder populations (Monroe Butler)
April 16, 2018 - Patient and caregiver perspectives on physician assisted death in ALS (Catherine Lomen-Hoerth)
April 2, 2018 - FAA regulations and preclinical Alzheimer’s biomarkers (Matt Lawrence)
March 25, 2018 - California End of Life Option Act working meeting
March 12, 2018 - Brain death and the Jahi McMath case (Sharon Kaufman)
February 12, 2018 - Cognitive testing and political leaders (Jalayne Arias)
January 25, 2018 - Palliative medicine (Krista Harrison)
January 11, 2018 - Ethical issues in the management of patients with dementia (Winston Chiong)