Architect, environmental gerontologist and GBHI Fellow, Emi Kiyota, led us in a journal club discussion about her paper, “Co-creating Environments: Empowering Elders and Strengthening Communities through Design” (Hastings Center Report, 2018) and Diana Anderson’s 2019 Architecture Ireland article, “The Ethics of Healthcare Architecture.”. We examined several architectural approaches to institutional housing for elders with dementia in the U.S. and abroad, and discussed the ethical implications of these designs for facility inhabitants and society at large.
Emi began by framing architecture as a human rights issue, emphasizing its potential to liberate or confine those whom it engages. We compared the impact of different design elements on residents in several assisted-living homes, from sprawling outdoor walkways that foster socialization in Dementia Villages to murals of halcyon landscapes disguising doors to artificially preserve familiar settings and prevent attempted exits. We discussed the importance of creating dynamic environments that challenge residents’ cognitive and physical skills through environmental press; for example, by erecting a staircase or offering alternative routes to a singular destination. Efforts to balance safety and freedom, and stability and spontaneity within nursing homes encouraged rich dialogue about paternalism, elder dignity, and environmental restraint. We also explored culturally-driven views toward nursing homes and elder care, with members of our group sharing their experiences with widespread stigma in rural parts of Mexico, elder abuse in Peruvian facilities, and inclusion of adults with dementia as restaurant employees in Japan.
We questioned the moral permissibility of the nursing home as a concept: At its best, it serves as a place for elders to thrive among one another with special services to accommodate their diminished competencies. At its worst, it operates as place for corralling individuals deemed burdensome and incapable of functioning in society. Some discussants instead advocated for integration of persons with dementia within their existing communities through litigation, education efforts, and clever design solutions, for instance, printing cards for caregivers to subtly notify strangers of their care-recipient’s cognitive status. Throughout our conversation, we acknowledged the tension surrounding architecture for persons with dementia produced by an amalgamation of conflicting factors, from the challenge of creating an enjoyable living place with limited funds to the desire to grant elders privacy while also avoiding injury and isolation.
Following-up on a previous neuroethics seminar about the integration of social neuroscience and the traditional social sciences, Dan Dohan and Kate Rankin led a discussion contrasting research in the natural and social sciences. Throughout our conversation, we drew from arguments presented in “Proving or Improving: On Health Care Research as a Form of Self-Reflection” by Annemarie Mol and “The Heart of the Matter. About Good Nursing and Telecare” by Jeannette Pols.
In response to Mol, who critiques clinical trials for merely addressing the biological aspects of disease without incorporating individuals’ lived experiences with illness, we questioned in what ways clinical research methods and qualitative methods might be viewed as complementary. We considered that there might be different standards of success in different inquiries; while natural scientists often seek to understand truth through quantitative evidence and generalizable data, many social scientists accept a probabilistic notion of truth and embrace the complexity of human health within broader social contexts. In discussing the utility of statistical significance within scientific research as a means of identifying studies with meaningful conclusions and determining the safety and efficacy of clinical treatments in larger populations, practices such as p-hacking suggest that a bare reliance on p-values in the competitive journal publication process may invite a narrow view of what is truly significant in science.
In the end, there may be more congruence between approaches to truth in the social sciences and in neuroscience than we originally supposed. While social scientists often regard their investigations of complex social phenomena as necessarily incomplete, neuroscientists also often regard their models (e.g., of the basal ganglia) as merely useful yet simplified tools for distilling complicated information.
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.
November 26, 2018 - Linking social neuroscience and the traditional social sciences (Dan Dohan & Katherine Rankin)
November 19, 2018 - Consent for data sharing in dementia research (Jalayne Arias, Renaud La Joie & Jen Yokoyama)
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)