Changes in cognitive functioning often raise thorny legal issues, which are the subject of both study and service at the UCSF/UC Hastings Consortium.


The Brain Trust: The Consortium's Winston Chiong (left) and Sarah Hooper

The Brain Trust: The Consortium’s Winston Chiong (left) and Sarah Hooper

Recent discoveries in neuroscience and advances in technology for monitoring the brain’s activity are having an immense impact on fields like education, psychology and medicine. Even in the law, insights from new brain studies are reshaping how we address mental capacity in the process of aging, the rights of neuro-diverse individuals and translating scientific findings in courtrooms. At the UCSF/UC Hastings Consortium on Law, Science and Health Policy, research and clinical practice related to brain health has become a core focus.

“There’s a recognition that we don’t know as much as we should about arguably the most important organ in our body, so there is a concerted push for research in this area that you can see in the Obama administration’s BRAIN Initiative and other programs,” said Consortium Executive Director Sarah Hooper. “Our work in this field asks: How do we translate these findings into law, clinical care and policy? How do we ensure that healthcare and social systems meet the needs of cognitively impaired individuals? What is the right balance between autonomy and protection for these groups?”

The Consortium supports interdisciplinary collaboration between medical and health science professionals and lawyers seeking to find common ground that improves patients’ lives, as well as the American healthcare system. Given that illnesses like Alzheimer’s, stroke and dementia will be much more prevalent among aging baby boomers, building a support infrastructure to anticipate these patients’ needs is paramount. Treating the medical condition is not enough because neurological changes that accompany these illnesses often create cognitive deficits that affect decision making. It is almost always necessary to involve at least one patient caregiver in order to coordinate care and perform basic interactions with the legal system, such as entering contracts, undertaking financial obligations, signing an advance directive or creating a will.

“We know the population is aging, and we expect the total population with dementia to increase,” said Consortium Associate Director Winston Chiong, M.D., Ph.D, who is also an assistant professor in the UCSF Department of Neurology’s Memory and Aging Center. “People often don’t have adequate advance medical plans, and their families are not prepared for the financial burdens or legal issues they will face. Yet they still have to make decisions. We hope we can come up with a model of care that is more sensitive to patient and caregiver needs and is cost effective so it can be sustainable in the long term.”

Winston Chiong and Sarah Hooper (center) train Julia Heunis to identify patients' planning needs.

Winston Chiong and Sarah Hooper (center) train Julia Heunis to identify patients’ planning needs.

A Dementia Care Ecosystem

Chiong and Hooper have joined forces as part of a larger collaboration between UC Hastings, UCSF and the University of Nebraska to try to improve dementia care. In 2014, as part of a three-year, $10 million grant from the Centers for Medicaid and Medicare Services (CMS), doctors and policy experts at the three universities began piloting a new model of care for dementia patients and their caregivers. A randomized controlled trial with 1,500 subjects is taking place in both urban San Francisco and Omaha, Neb., as well as in rural Nebraska. Grants like this are made possible by the Affordable Care Act, which authorized the federal government to design and test new ideas about improving healthcare and lowering costs to consumers.

The proposed “dementia care ecosystem” aims to increase well-being for patients and caregivers, and improve satisfaction with medical care. At the same time, it aims to reduce the cost of dementia care by delaying admission to long-term care facilities by 180 days, lowering emergency room admissions by 50 percent, preventing 30 percent of hospital and ambulance costs, and cutting the costs of prescription drugs by 15 percent.

Central to the study is the position of a “care team navigator” who will offer 24/7 assistance to patients and their caregivers. Attentively monitoring their needs, the navigator will provide links to targeted education, facilitate connections to community resources and assist with contacting healthcare professionals as needed. These advisers will also help connect patients to resources for appointing agents, making healthcare directives, managing finances and benefits, and setting up protections against fraud and abuse.

“Patients and caregivers are overwhelmed by the number and complexity of decisions that can come with a dementia diagnosis,” Hooper explained. “Legal assistance plays an important role in empowering patients to articulate their goals of care and ensure that their families have financial and other resources to support those goals. Early legal planning is essential to help prevent conservatorship, unnecessary loss of assets or financial abuse. But many people don’t recognize the need for legal assistance or know how to access these services.” As part of the study, Hooper trains navigators to screen for these needs in patients and link them to appropriate help in the community.

Hooper said that one of the most important aspects of the dementia care ecosystem is encouraging patients and caregivers to discuss what patients want as the disease progresses and to communicate these goals with family members and healthcare providers across settings.

“There is a growing recognition that a tremendous amount of the burden of this disease falls on caregivers,” Chiong said. “They may feel like they are out on their own doing this work, but we want to provide a system of support.” Hence the name ecosystem, which is meant to reflect the idea that the patient and caregiver exist within a supportive network. The study will collect metrics and qualitative information from every participant. Medical outcomes will be assessed; CMS will comb over data about healthcare utilization; and the legal part of the program will be carefully tracked. In the future, the dementia care ecosystem might become a wide-scale program that could be adopted by health insurers, hospitals or other providers, improving both the care and the economics of dementia.

Assisting Older Adults in Need

The Consortium’s Medical-Legal Partnership for Seniors (MLPS) focuses on similar issues: assisting older adults with legal planning in the context of their medical care. At the UCSF Center for Geriatric Care, students provide legal aid on-site to low-income seniors. Physicians who see patients with legal issues or who need advice about public benefits are able to “write a prescription” for legal aid that is quickly addressed. MLPS also offers these services to homebound patients and recently expanded services to the San Francisco VA Medical Center under the leadership of Equal Justice Works Fellow Sara Huffman.

With so many elderly clients facing health problems that reduce their cognitive capacity, the clinic “focuses on providing advance planning services and incapacity planning,” said Director Yvonne Troya. “It is something every adult needs to do, because it is likely that everyone will eventually need someone to step in and handle day-to-day affairs,” she explained. Through the MLPS program, law students and UCSF medical professionals are trained in the fine art of discerning client capacity, which Troya said is fraught with confusion both medically and legally.

“There are no bright lines and protocols,” she said. “Doctors need to know what the law is because there is a different capacity standard for every act, whether that’s signing an advance directive for medical care, establishing a power of attorney for finances, writing a will, marrying or driving.” She said that doctors are frequently asked to write official letters about patient capacity that trigger legal processes. In some cases, patients can have all of their rights taken away unjustly.

Troya explained that under California law, capacity determinations are based on evidence of deficits in mental functions that impair an individual’s ability to execute a particular act. Every lawyer’s obligation is to make sure that his or her client has the appropriate level of capacity prior to signing any documents, “but capacity can change from hour to hour when you are really on the line,” she said.

One of MLPS’ aims is to help clients avoid conservatorship proceedings: a court appoints a conservator to make decisions for an incapacitated adult. This can be a stressful, expensive and public process that can often be avoided by completing incapacity planning documents ahead of time. “We counsel clients carefully through the drafting process to help them feel secure about their future planning,” Troya said. In addition, the clinic provides legal services around public benefits and housing matters to support the goal of many seniors to live independently at home for as long as possible.

But clients can complete their advance planning documents only if they have sufficient capacity. Troya said that, for clients with borderline capacity, clinic advocates make multiple visits to see if clients have sufficient capacity to meaningfully engage in the process and execute their documents. Sometimes, she added, “We need to jump into our ‘elder-law mobile’ on short notice with our notary book in the hopes that our client has sufficient capacity to sign.”

We need many more lawyers working in tandem with scientists to come up with good ideas.

Neurodiversity From Social and Legal Perspectives

Visiting Scholar Andrea Lollini of the University of Bologna in Italy explores capacity issues in an entirely different population: individuals with neurodevelopmental disorders. With the support of a Marie Curie grant from the European Union’s Horizon 2020 research and innovation program, Lollini is spending three years inquiring into the social and legal ramifications of a new category of difference called neurodiversity. The term crystallized in the 1990s to describe individuals diagnosed with autism, Asperger’s syndrome and dyslexia.

Thanks to the digital revolution and the Internet, more people with these conditions have had the opportunity to express themselves publicly. “We as a society realized that these people, who back in the day were institutionalized, had stories to tell,” Lollini said. “This was a window into their internal world.”

During the past 10 years, the notion that these conditions are not automatically diseases that must be treated or cured has become more widely accepted. Rather, differences in how people process inputs and respond to stimuli are valuable human cognitive variations. The legal dimensions of neurodiversity address accommodations in healthcare, education, discrimination and criminal law. In his work, Lollini examines neurodiversity in light of the Equal Protection Clause, which is important for education and healthcare.

Much of his research takes place at UCSF in a clinical practice that sees patients with autism spectrum disorders
as well as in a neuroscience research team focusing on dyslexia. As a social coach, he assists specialists in behavioral therapies for young adults on the spectrum. “When I work alongside specialists and scientists and see patients, I get fundamental data to understand the case laws and how one may design more neurodiverse-friendly legal arrangements,” he said. This is crucial, he explained, because the neurodiversity debate is so complex and controversial.

In some cases, autism is a mild mental impairment that co-exists with extraordinary giftedness, and for these people their condition is much like a different identity. Yet many other autistic people require full-time social, educational and health support, which society is obligated to provide. “We have to find the right balance between these approaches and opinions, and incorporate science as much as possible,” he said. “We need many more lawyers working in tandem with scientists to come up with good ideas. This is what we are trying to do at the Consortium.”

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