Wednesday, July 21, 2021
Elizabeth Moran, a relatively new staff attorney for the ABA's Commission on Law and Aging, has an interesting article in the latest issue of Bifocal, Vol. 42, Issue 6 (July-August 2021). Moran outlines several key recommendations made by the National Guardianship Network during their May 2021 national Summit. She points to two of the 22 recommendations that bear on "effective communication" for persons with disabilities, especially when involved in court proceedings that may affect any determination of "legal capacity."
Recommendation 1.2 advocates for courts and state authorities "must ensure that all judicial proceedings" that can impact a determination of an adult's legal capacity must provide "meaningful due process" which includes respect for the individual's "preferred communication accommodations."
Recommendation 2.4 provides that federal and state authorities "should recognize that supported decision-making can be a reasonable accommodation under the Americans with Disabilities act of 1990, as amended, in supporting an individual in making their own decisions and retaining their right to do so."
Moran acknowledges there is weak understanding within some courts for how supported decision-making will work, even as she advocates strongly for its use. She writes:
While there is growing awareness of “supported decision-making” (SDM), particularly as an alternative to guardianship, SDM does not have a universally accepted legal definition. It is, however, becoming a more commonly understood concept of integrated supports which honors an individual’s integrity of choice with the underlying principle that, with enough appropriate supports and services, nearly every individual has the capacity to make decisions. When people use SDM as a communication accommodation, they use family members, friends, professionals, and others they trust and who know them well to help them understand the situations and choices they face, but with the ultimate choice left to the adult. This eliminates a substitute decision-maker and maximizes autonomy for the individual who may need communication supports for speaking, reading, writing, or understanding in order to meaningfully participate. The need for this kind of support necessarily includes and can provide for meaningful participation in court services, programs and activities.
For more on this important topic, read Moran's full piece, "Something to Talk About: Supported Decision Making and Access to Justice for All."
July 21, 2021 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Federal Statutes/Regulations, State Statutes/Regulations | Permalink | Comments (0)
Monday, July 19, 2021
UVA Law Professor Naomi Cahn: Why Conservatorships Like the One Controlling Britney Spears Can Lead to Abuse
Prolific writer Naomi Cahn, who in 2020 moved from George Washington to University of Virginia School of Law as a distinguished professor and director of UVA's Family Law Center, has a new commentary on the potential impact of the Britney Spears' litigation challenging her California-based conservatorship. Professor Cahn observes at the outset:
Spears’ case is unusual: Conservatorships are typically not imposed on someone who doesn’t have severe cognitive impairments, and Spears has toured the world, released four albums and earned US$131 million, all while deemed legally unfit to manage her finances or her own body.
Despite the unique circumstances of Ms. Spears' circumstances, her case demonstrates the lack of national data tracking such "protective" proceedings. Professor Cahn writes:
Broad powers and “anemic” oversight make conservatorships subject to multiple forms of abuse, ranging from the imposition of unnecessary restrictions on the individual to financial mismanagement. Nothing can be done if no one finds out about the abuse.
A 2010 U.S. government report identified hundreds of allegations of physical abuse, neglect and financial impropriety by conservators. Most of them related to financial exploitation, and that, in turn, often meant that the victim’s family was affected, losing not just expected inheritances but also contact with the person subject to the conservatorship.
A 2017 New Yorker article on abusive guardians highlighted the case of April Parks, who was sentenced to up to 40 years in prison for financial conduct related to numerous conservatorships she handled. She was also ordered to pay more than half a million dollars to her victims.
But beyond these anecdotes, no one even knows the magnitude of the problem. That’s because conservatorships are subject to state law, and each state handles the imposition of them as well as data collection differently. And a 2018 Senate report found that most states are unable to report accurate data on conservatorships.
Professor Cahn sees Britney Spears' case as generating a national outrage that was missing from earlier anecdotal indications of problems for older adults trapped in "protective" proceedings. She concludes:
Spears may soon find herself free of her conservatorship. Regardless, her situation has already put a spotlight on the potential for abuse – and it may lead to a better system for those who genuinely need the assistance.
Loss of Empathy and How Such Changes Affect Caregiving Relationships (and Can Inadvertently Affect Law-Related Matters)
During the pandemic, as our caregiving relationships have probably become more intense because of the physical restrictions on travel, socializing, eating out, etc., I've had time to observe and think more about "empathy." For several years, even before Covid-19 changed social patterns, I've heard friends and family members who are serving as caregivers talk about frustrations they are experiencing with "their" older persons, not just because of increasing physical needs, but because of changes in personality. While a loved one's confusion and memory problems are typically associated with Alzheimer's Disease and other neurocognitive impairments, I also notice how often the caregivers can "forgive" the problems associated with those domains, but are enormously impacted if their loved one no longer is "nice" or no longer seems to be interested in, or cares about others' moods or needs.
Loss of empathy is a documented phenomenon in aging generally, and in neurocognitive impairments specifically. At the same time, loss of empathy seems to be rather weakly studied, or perhaps, more accurately, rather weakly understood.
Brief excerpts from a review of some recent literature on loss of empathy:
- "Early loss of empathy is one of the core symptoms of behavioral-variant frontotemporal dementia (bvFTD), which is often diagnosed when people are in their 50s. In contrast, empathy remains relatively intact in people with Alzheimer's disease (AD). People with bvFTD are often unaware of the impact of their behavior on others, causing strain in close relationships. The  study conducted by NeuRA researcher Dr Muireann Irish, found that both the ability to understand other people's emotions (cognitive empathy) and to share in other people's feelings (affective empathy) were decreased in people with bvFTD. People diagnosed with Alzheimer's however, retained the capacity for affective empathy." (from a 2016 report by NeuRA, an independent, not-for-profit research institute based in Sydney, Australia).
- "The question of how aging impacts empathy has important implications for public health because reduced empathy has been associated with greater loneliness, depression, and poorer relationship satisfaction. Socioemotional selectivity theory ... highlights the importance of emotional meaning for older adults, and this typically takes the form of spending time with close others. Thus, if older adults experience decreases in empathy, this could have a significant, negative impact on their well-being." (from Preliminary Conclusions: State of the Research on Empathy in Aging, in Janelle Beadle and Christine E. de la Vega's article on "Impact of Aging on Empathy: Review of Psychological and Neural Mechanisms" published 2019 in Front Psychiatry).
How do changes in empathy impact decision-making, including decisions about pre-death gifts and post-death bequests? If differences in the ability to empathize with others are associated with a disease process, should that mean that any corresponding change in gifting could (or should) be legally impacted? Is loss of empathy a component of reduced legal competency or legal capacity?
Monday, July 12, 2021
The California Bar has asked for input on Proposed Formal Opinion Interim No. 13-0002 (Client with Diminished Capacity). According to the announcement
Proposed Formal Opinion Interim No. 13‑0002 considers: What are the ethical obligations of a lawyer for a client with diminished capacity?
The opinion interprets rules 1.0.1(e), 1.1, 1.2, 1.4, 1.6, 1.7, and 8.4.1 of the Rules of Professional Conduct of the State Bar of California; Business and Professions Code section 6068(e).
The opinion digest states: A lawyer for a client with diminished capacity should attempt, insofar as reasonably possible, to preserve a normal attorney client relationship with the client, that is, a relationship in which the client makes those decisions normally reserved to the client. The lawyer’s ethical obligations to such a client do not change, but the client’s diminished capacity may require the lawyer to change how the lawyer goes about fulfilling them. In particular, the duties of competence, communication, loyalty, and nondiscrimination may require additional measures to ensure that the client’s decision-making authority is preserved and respected. In representing such a client, a lawyer must sometimes make difficult judgments relating to the client’s capacity. Provided that such judgments are informed and disinterested, they should not lead to professional discipline. In some situations, the client’s lack of capacity may require that the lawyer decline to effectuate the client’s expressed wishes. When the lawyer reasonably believes that the client’s diminished capacity exposes the client to harm, the lawyer may seek the client’s informed consent to take protective measures. If the client cannot or does not give informed consent, the lawyer may be unable to protect the client against harm. A lawyer representing a competent client who may later become incapacitated may propose to the client that the client give advanced consent to protective disclosure in the event that such incapacity occurs. If appropriately limited and informed, such a consent is ethically proper.
At its meeting on October 23, 2020, and in accordance with their procedures, the State Bar Standing Committee on Professional Responsibility and Conduct tentatively approved Proposed Formal Opinion Interim No. 13-0002 for a 90-day public comment distribution. Subsequently, at its meeting on June 11, 2021, COPRAC revised the opinion in response to public comment and approved Proposed Formal Opinion Interim No. 13-0002 for an additional 60-day public comment distribution.
The text of the proposed opinion is available here.
Republished July 19 to correct error in title.
Seems like a good time to remind everyone of the fabulous resource from the ABA Commission on Law and Aging, Assessment of Older Adults with Diminished Capacities: A Handbook for Lawyers, 2nd Edition. It's a must have for every attorney's library.
Sunday, July 11, 2021
Analyzing Britney Spears' Conservatorship: How Should Courts Respond to Allegations of a Toxic Guardianship?
This summer, J. Collin Fulton, a rising 2L student at Dickinson Law, with a prelaw background in journalism, has been doing a fantastic job while working on projects with me. He put together this very thoughtful overview of how Britney Spears' concerns, arising in the context of the California-based proceeding, may be relevant to the larger analysis of guardianships and conservatorships across the nation.
In the areas of guardianship and conservatorship law, perhaps no recent case has captured the attention of the American public as thoroughly as the conservatorship of Britney Spears. The Pop singer’s conservatorship was established in California in 2008 and has become one of the best-known examples of how, under U.S. law, a person can have the management of both their personal life and financial affairs placed under the control of a court-appointed guardian/conservator, typically as a result of mental or physical conditions or advanced age.
While a legion of Ms. Spears’ fans has routinely called into question both the necessity and nature of the singer’s conservatorship, it was the release of the New York Times' 2019 documentary “Framing Britney Spears” which brought the details of Ms. Spears conservatorship to the attention of the broader public. I personally became aware following the Times’ publication on June 22nd of an article detailing how Ms. Spears herself feels about the conservatorship. Based on court records acquired by the NYTimes, the article details both Ms. Spears opposition to the continuance of her conservatorship in its present form as well as Ms. Spears claims concerning some of the effects the conservatorship has had on her life. Based on court documents going back to 2014, the NYTimes article reports that:
- Spears “feels the conservatorship has become an oppressive and controlling tool against her.”
- Spears has informed the court that, as a result of the conservatorship, she felt compelled to perform against her will and compelled to stay at a mental health facility against her will.
- The conservatorship restricted a broad range of Ms. Spears decision making, ranging from who she was allowed to date to the manner in which she could decorate her home.
Ms. Spears’s June 23 public testimony further cast the conservatorship in a negative light. In the testimony, the singer claimed that, against her will, she was forced to take mood-altering drugs and forced onto contraception. Ms. Spears again called for her conservatorship to be ended and generally for the laws surrounding conservatorships to be changed. This call has been echoed by numerous other singers in support of Ms. Spears, including Justin Timberlake, Halsey, Brandy, and Mariah Carrey, as reported by the BBC.
Given what Ms. Spears claims has transpired as a result of her conservatorship and the public support she has received, I became deeply curious about how a conservatorship can actually be terminated. Given the complexity of guardianship/conservatorship laws, this is a question without a simple answer.
First, state laws vary significantly regarding who, how, and why a person can be placed under a guardianship/conservatorship. As Ms. Spears’s case takes place in California, I focus there.
There are two types of conservatorships under California law: Lanterman-Petris-Short (LPS) and Probate conservatorships, the latter of which is exemplified by Ms. Spears’s situation.
Such conservatorships are typically permanent affairs in California; however, they can be terminated in the following ways:
- The conservatorship ends due to the death of the conservatee.
- A judge may end the conservatorship upon petition to do so resulting from the conservatee regaining the ability to manage their own affairs (The argument Ms. Spears appears to be currently making).
- A conservatorship of the estate can be ended if the conservatee ceases to possess any assets to protect.
Learning this raised a new question for me: why would a court allow a conservatorship such as Ms. Spears’s to continue given her allegations? I believe the answer to this question lies in the purpose of guardianship/conservatorship laws.
This purpose is perhaps best exemplified in the California “Handbook for Conservators,” which the state mandates for conservator cases. The Handbook has a clear message for every new conservator: “You have been appointed conservator because someone – your parent, spouse, child, or other relative or friend – needs help, and you are willing to lend a hand.” This simple message, in my opinion, captures the thought behind guardianship and conservatorship laws. There are, sadly, situations in which a person is unable to manage their affairs. Guardianships and conservatorships allow for a legal redress to such situations, enabling courts to appoint a trusted individual to provide assistance in such circumstances.
The California Handbook also highlights another important fact central to the functionality of conservatorships: “The position of conservator is one of great trust and responsibility. The court and conservatee are trusting you to follow the law and to act in the conservatee’s best interests.” Given the incredible responsibilities assumed by a guardian/conservator, it is indeed imperative that guardians/conservators execute their duties with the utmost understanding and respect for the individual's own values and goals, while also complying with the legal obligation to make decisions in the best interest of the individual they have been appointed to protect.
With the purpose of guardianships/conservatorships now understood, I turn back to Ms. Spears and the question of why, given her allegations, her conservatorship still remains. The answer is, simply, that legal process such as this take time.
Just as a court needed to consider a multitude of factors in determining that Ms. Spears should become a conservatee, the court must now perform proper inquiries into the allegations that Ms. Spears has raised and then determine an appropriate response to take based on the validity of these allegations. This is true not only for Ms. Spears, but for any person in a guardianship/conservatorship situation. Guardianships/conservatorships are serious affairs, ones in which a person’s ability to control their own lives have been taken from them and handed to another individual, hopefully one who is trustworthy and will act in their best interest. Should doubts emerge about the actions of a guardian/conservator, or indeed the necessity of an established guardianship/conservatorship itself, investigating the situation thoroughly is paramount to the integrity of not only the guardianship/conservatorship in question but also the legal system of guardianships/conservatorships at large.
Mr. Fulton concludes: I thus believe that while a quick response from the court may satiate the immediate public outcry for change, a proper inquiry which establishes the truth and, in turn, enables the court to act based on the facts will not only improve Ms. Spears' situation but enhance public knowledge on the current state of guardianship/conservatorship laws in the United States.
July 11, 2021 in Cognitive Impairment, Consumer Information, Current Affairs, Elder Abuse/Guardianship/Conservatorship, Estates and Trusts, Ethical Issues, State Cases, State Statutes/Regulations | Permalink | Comments (0)
Friday, July 9, 2021
During the first part of my summer, I wrote a review on Senator Amy Klobuchar's April 2021 book, Antitrust: Taking On Monopoly Power From the Gilded Age to the Digital Age. That turned out to be a very enjoyable, stimulating task and my article will be published late summer or early fall. This gave me the incentive to rethink how antitrust law, as a form of pro-consumer-protection "competition" rules might affect long-term care, including the concentration of ownership and operation of nursing homes and other types of "senior living." The student editor for the Law Review, Claudia Bernstein (Dickinson Law, Class of 2022), also has been captured by the topic, and she sent me an article today from the New York Times that furthered this inquiry. A key passage:
[In the U.S.] Fewer new businesses are starting. Existing businesses have slowed the pace at which they hire new workers . . . . Workers are less likely to switch jobs or move to a new city. Companies are investing in new buildings and equipment at a lower rate. And small businesses make up a shrinking share of the economy.
Together, these trends suggest that the economy suffers from a lack of fair competition, many economists believe. Large corporations are often able to increase profits not by providing better products than their rivals but instead by being so big that they exercise power over workers and consumers. The government also plays a role, through policies that protect existing companies at the expense of start-ups and new entrants into an industry.
The technical term for excess profits from a lack of competition is “monopoly rents.” Just think about how frustrated you may have been by the customer service from an airline, cable-television provider or health insurer. And then imagine how frustrating it may be to work there. Despite the problems at these companies, consumers and workers don’t always have good alternatives.
In my local area, there is a variation on this problem. As I have written about recently, county officials are proposing to close the county's "nursing home," which in my experience has been well run and served as a viable alternative for necessary services, including memory care. The likely purchaser will be a for-profit company (a modest-size, relatively new tri-state regional player). The county hopes to cease "having to subside the facility with general tax money." But, without those "subsidies," consumers' payment for care will have to increase, affecting residents unlikely to have the ability to pay more. As one article on the history of Pennsylvania's county nursing home conversions concludes:
County-owned homes, once ubiquitous, are becoming less common in Pennsylvania. Facilities that have been privatized generally have lower ratings on common metrics; a York Dispatch study in 2018 found that 15 formerly county-owned facilities sold since 2005 had an average rating of 1.9 stars out of five on the common scale used by the Centers for Medicare and Medicaid Services, while the state’s 21 county-owned homes averaged 3.1 stars [out of a possible 5 stars].
Monday, July 5, 2021
I'm currently working on an article that looks at senior living trends, and came across several interesting, significant data points in a January 2021 article entitled The Future of Headship and Homeownership, by Laurie Goodman and Jun Zhu for the Urban Institute.
The central prediction is that household growth will be "weak" over the next two decades, a decline associated with slowing of U.S. population growth and lower "headship rates" among most age groups. The terms are defined at the beginning of the article.
Further, key takeaways from the article include these findings:
- Almost all net household growth will be from senior households. Of the 16.1 million net new households formed between 2020 and 2040, 13.8 million will be headed by someone over 65.
- All net household growth will be from households of color. Between 2020 and 2040, there will be 16.1 million net new households. Hispanic households will grow by 8.6 million, households of other races (mostly Asian households) will grow by 4.8 million, and Black households will grow by 3.4 million. White households will decline by 0.6 million.
However, despite what at first seems like "better" (if not good news) for households of color, the authors also predict:
- The decline in the homeownership rate will be particularly pronounced for Black households headed by 45-to 74-year-olds. If current policies stay the same, the Black homeownership rate will fall well below the rate of previous generations at the same age and result in an unprecedented number of Black renters over 65; we project elderly Black renters will more than double from 1.3 million in 2020 to 2.6 million in 2040.
Thursday, July 1, 2021
As Covid-19 Eases, Is Germany Again Seeking "Filial Support" (Elternunterhalt) Payments from Children?
It has been a while since I've written a "Filial Friday" post. After more than a year of no calls or requests for information about "Elternunterhalt" payments in Germany, in the last 45 days I've heard from three sets of American citizens who recently received requests for financial contributions to the care of an aging parent in Germany. In each of the instances, the adult children had never heard of Germany's parental maintenance laws before receiving the demand.
First, Germany adopted a threshold annual income for a potentially obligated child of at least 100,000 Euros, effective for claims after January 1, 2020.
Second, it appears that Germany has also clarified that only the adult child's income is considered in determining the amount of the potential support obligation. In the past, the German authorities would routinely ask for "all" income and asset information for the child and any spouse or partner.
For more on this, see this article and another article, from Germany, describing these changes as "reforms." Germany's renewed use of filial support laws began with a ruling by the Federal Court on June 23, 2002. "The legal basis is mainly Section 1601 and 1602 Paragraph 1 BGB," according to a third article.
While I've often seen "claim letters" submitted to adult children living in the U.S., I've never seen a formal administrative proceeding or court proceeding to enforce such a claim if not paid voluntarily. In some instances, I've seen German authorities agree to drop the claim, usually because there is strong evidence that the now needy-parent neglected or mistreated the child while the child was a minor. I have also sometimes seen a voluntary settlement between the U.S. child and the German authorities. But, have any of our readers seen a litigated outcome in a cross-border claim? Do we have any attorneys reading this blog with experience with cross-border claims between the U.S. and Germany?
Wednesday, June 30, 2021
A number of years ago, I had an email correspondence going with Dr. Jason Karlawish, Professor of Medicine, Medical Ethics and Health Policy, and Neurology at the University of Pennsylvania. He was writing and speaking in intelligent, understandable ways about complex issues in degenerative neurocognitive disorders.
My sister brought him back to my attention, as she had just heard Brené Brown's podcast interview with Dr. Karlawish. Dr. Karlawish recently published an important book on The Problem of Alzheimer's. I immediately ordered the book and I'm still reading, but I can tell this is -- and should be -- an important resource for anyone trying to understand or explain the Alzheimer's or other progressive impairments in cognition. Frankly, that means all of us. He is taking on an essential question: "What's a good life when you're losing your ability to determine that life for yourself?" The subtitle of the book helps explain the scope: "How science, culture, and politics turned a rare disease into a crisis and what we can do about it."
I'm sure I'll write more hear about this book as I plunge ever deeper into the clear prose, organized in logical chunks, where I'm finding "gold" embedded on every page. It is not a soothing read, but that is exactly why it is so important.
June 30, 2021 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Health Care/Long Term Care, Statistics | Permalink | Comments (0)
Saturday, June 19, 2021
Our law school, Dickinson Law, has been engaged in an important reflective process the last year, under the leadership of key individuals including Danielle Conway and Dermot Groome, among others. We have worked together and separately to think about inclusion, and race, and discrimination, and difference, and about how "the law" plays a part in making matters better or worse.
On this first official, national celebration of the history of Juneteenth, I'm finishing reading a remarkable book, How The Word Is Passed by Clint Smith. The journalist and poet uses his personal journeys to a number of locations inside and outside the U.S. that have been part of the history of slavery in the U.S. One chapter is devoted to Galveston Island and its complicated history as the site where a Union general is said to have stood on the balcony of a villa in 1865 to announce the end of slavery to the people of Texas.
Mr. Smith attended one of the annual Texas state Juneteenth celebrations at that villa and he writes about the impact on his own life's history as he watched Galveston youth narrating a chronology of events that shaped both slavery and its aftermath:
I watched these young people read to the audience parts of history that placed our country in context. I felt, in that moment, envious of them, Had I known when I was younger what some of these students were sharing, I felt as if I would have been liberated from a social and emotional paralysis that for so long I could not name -- a paralysis that had arisen from never knowing enough of my own history to effectively identify the lies I was being told by others: lies about what slavery was and what it did to people; lies about what came after our supposed emancipation; lies about why our country looks the way it does today. I had grown up in a world that never tired of telling me and other Black children like me all of the things that were wrong with us, all of the things we needed to do better. But not enough people spoke about the reason so many Black children grow up in communities saturated with poverty and violence. Not enough people spoke about how these realities were the result of decisions made by people in power and had existed for generations before us.
After college, when I was doing more reading on my own, I began to understand all that has happened to our communities, to our people, over generations -- it was liberating. I had language to name what I felt but had never known how to say. People sometimes believe that if they talk to Black youth about the historical legacy of slavery -- and the intergenerational iterations of systemic racism that followed -- young people will feel overwhelmed and shut down. But there is enormous value in providing young people with the language, the history, and the framework to identify why their society looks the way it does. . . . I watched these young people share this history, and I dreamed of what it might mean if we could extend these lessons to every child. How different might our country look if all of us fully understood what happened here?
Mr. Smith wrote these words in the book that was published just this month, June of 2021, without knowing what was about to take place.
A woman who also recognized the power of this history, is Opal Lee, whose lifetime of advocacy began with her own home in Marshall, Texas, where on Juneteenth, 1939 an angry mob of white supremacists set fire to the home of 12-year-old Opal. She is now 94-years-old. She sat next to President Biden as he signed the legislation to make the today a national holiday of remembrance and celebration. Opal Lee, "the Grandmother of Juneteenth," has been walking -- marching -- for most of her life in support of this moment. But, as Clint Smith observes, "The project of freedom, Juneteenth reminds us, is precarious. . . ."
Read more about Opal Lee here, from the Washington Post.
Tuesday, June 15, 2021
Bloomberg recently published an opinion regarding the Uniform Definition of Brain Death, A Scary Plan to Revise the Definition of Death. "People may be less willing to agree to be organ donors if they believe the quest for organs changes how patients are treated."
According to the article, the Uniform Law Commission has a study committee, looking at "the need for and feasibility of updating the Uniform Determination of Death Act (1980), which has been enacted in 44 states. Issues to be considered include lack of uniformity in the medical standards used to determine death by neurologic criteria, the relevance of hormonal functions, and whether notice should be provided before a determination of death."
The Bloomberg article mentions an opinion piece published last year in the Annals of Internal Medicine which the Bloomberg article suggests is concerning. The Bloomberg article examines the elements of the proposal and reviews the advantages of it, but also notes opposition to it. "Despite all the arguments in favor of the revisions, more than 100 experts in medicine, law, philosophy and bioethics have signed a statement of opposition...."
The article discusses the objections and how the proposal might reduce the amount of organ donations. The article is very interesting and if you could End of Life planning in your classes, this article gives you some thoughtful background.
Thursday, June 10, 2021
The CEO for Biogen, the publicly-traded biotechnology company that developed Aduhelm, issued a statement about the company's policies and plans for the new drug in conjunction with the FDA's announcement of its accelerated approval of the drug for patients with Alzheimer's Disease. He writes in part:
The approval of ADUHELM represents a crucial inflection point in our collective battle against Alzheimer’s disease. By addressing a defining pathology of the disease, this novel therapy has the potential to help fundamentally change the way patients are diagnosed and treated.
I have hoped for years that we would reach a moment like this. We all know the staggering numbers: there have been at least 100 drug development programs discontinued since 2003—the last time a new Alzheimer’s drug was approved. What it tells us is that the path for innovation is not straightforward, especially for something as complex as Alzheimer’s research. The journey during Biogen’s many years of research and development has been humbling, but we have learned from industry’s past research efforts and been determined to follow the science, always driven to address patients’ unmet needs.
ADUHELM is a first-in-class approved therapy: I believe it will be the catalyst to a new era of innovation for Alzheimer’s disease, and the first of many new treatments available to patients. More resources will be drawn into research that can help patients through the disease continuum, explore new pathways, and find potential therapy combinations.
The use of this drug involves some important questions about patient consent, precisely because the drug will most likely be used with people who have "confirmed presence of amyloid pathology and mild cognitive impairment or mild dementia stage of disease, consistent with Stage 3 and Stage 4 Alzheimer’s disease," the group of patients who took part in the pre-approval clinical trials. What is the process for obtaining such consent with cognitively-impaired patients?
Several articles have explored this topic outside of the specific drug in question:
In England, the nonprofit organization Physiopedia, offers a detailed protocol for informed consent in the context of cognitive impairment. For example, it suggests assessment of competence involves paying attention to four main abilities:
The person must have sufficient capacity to understand the information. If the study involves a considerable degree of risk, more information must be provided, particularly about possible risks and benefits, and the potential participant must be able to understand such information.
The person must be able to retain, use and weigh up such information long enough to be able to make a decision. In addition, they must also be able to understand what the decision is about, why they are being asked to make it, and what the consequences of making or not making that decision might be.
Possible benefits, risks and inconvenience linked to participating in research must be understood and weighed against the person’s own values and goals, which means that the person must understand how participating might affect him/her personally (High, 1992 and Stanley et al., 1984 in Olde Rikkert et al., 1997).
The person must have the ability to communicate his/her decision.
See also: "Informed Consent in Two Alzheimer's Disease Research Centers: Insights from Research Coordinators," by Christin M. Suver, and others, published April-June 2020, and announcing the plan to use the research to assist in development of "an electronic informed consent (eConsent) designed to boost engagement, enhance trust, and improve understanding by supporting participants' direct agency in the IC process."
Tuesday, June 8, 2021
I used to follow (and regularly blog about) new drugs in the pipeline for Alzheimer's treatment. Then I realized that the drugs weren't making it to the market place. While attending medical programs about R & D, I learned that it was going to be tough to find any magic treatments, much less "cures."
To it was interesting to read this week that for the first time in some 18 years, the FDA has approved use of a new drug, with the marketing name Aduhelm and the generic name Aducanumab (kind of sounds like abracadabra, doesn't it?), manufactured by Biogen.
Aduhelm is described by the FDA as an "amyloid beta-directed antibody," which was approved under an "accelerated approval pathway," to give "patients suffering from a serious disease earlier access to drugs when there is an expectation of clinical benefit despite some uncertainty about the clinical benefit of the drug."
But there is a lot of sobering news accompanying this announcement:
First, the mechanism of delivery: monthly intravenous infusions, which means a clinical visit lasting at least an hour per infusion.
Second, Biogen's own predictions about cost: a "list price" predicted to average $56,000 per year per patient! Yikes.
Third, the critical response from a range of experts in relevant research, pharmacy and health fields about the approval process to date, indicating a history of interruptions in the clinical trials when preliminary results showed little to no evidence of clinical benefit.
Fourth: the need for assessment before the first infusion with an MRI, plus recommended follow up MRIs prior to the 7th and 12th infusions, to assess the potential for ARIA-H, which are amyloid-related abnormalities, also potentially associated with edema in the brain.
Here are some links (and I'll try to keep this list up-to-date as new info comes in):
STAT's commentary, dated June 7, 2021 on FAQs: What You Need to Know about the Alzheimer's Drug Aduhelm
New York Times, dated June 8, 2021: FDA Approves Alzheimer's Drug Despite Fierce Debate Over Whether it Works
June 8, 2021 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, Federal Statutes/Regulations, Health Care/Long Term Care, Medicare, Science, Statistics | Permalink | Comments (0)
Thursday, June 3, 2021
In Carlisle, a classic college town in Central Pennsylvania, the hottest topic at the moment is, surprisingly enough, the "county" nursing home.
"Save Claremont" signs outnumbered the political signs in the recent primary election.
A robust advocacy movement seeks to prevent the sale of Claremont Nursing & Rehabilitation Center, a publicly-administered facility with 282-beds to private enterprise. In a detailed story carried by local newspaper, The Patriot News, both sides of the issue are making their pitches:
The members of Citizens Saving Claremont are arguing the county not only can keep Claremont afloat, but with some effort, investment and leadership, they can make it thrive.
"It has been sustained for 192 years," said Tim Potts, one of the founding members of Citizens Saving Claremont. "This year, 2021, is the first year that we've had to use county money to support Claremont, and that's only on a temporary basis because of the impact of COVID." . . .
But that doesn't change the fact that Claremont is hemorrhaging money, Cumberland County Commissioner Gary Eichelberger said. Projections show it will only get worse and will have to be propped up by taxpayer dollars.
And the completion of a sales agreement could be just days away.
For some advocates, keeping the facility in public hands is about maintaining a commitment to citizens of all income levels, and they point out that Claremont's Medicare "star" rating has usually been higher than private enterprise nursing homes in the region. As recently as 2002, as many as 40 of Pennsylvania's 67 counties had "public homes"; but, currently just 21 remain in county hands.
For more see Citizens Group Pushes to Save Claremont, published online behind a paywall on June 1, 2021 and on the front page of the traditional newspaper format on June 4, 2021.
With lockdowns being lifted in commercial arenas, I'm once again hearing from residents in Continuing Care Retirement Communities (CCRCs), also sometimes called Life Plan Communities, as well as other similar senior living settings. The most frequently raised concern is "how can management of my community make major changes in services and amenities without asking us if we agree to a new contract?" Sometimes I am able to recommend local legal counsel for the callers.
As a matter of theory, there's a traditional "law-based" answer to this question, with state-specific tweaks. And then there is what happens all too often in real life.
Generally speaking, the law provides that unilateral attempts by one party to make significant changes in the parties' duties under a contract are not legally effective. Here's one state Supreme Court's typical statement of the rule of law (written in the context of considering an employer's unilateral attempt to change an employment contract):
The cases dealing with employment contracts are merely part of the general rule that recognizes no difference between an express and an implied contract.... As a result, to effectively modify a contract, whether implied-in-fact or express, there must be: (1) an offer to modify the contract, (2) assent to or acceptance of that offer, and (3) consideration."
Demasse v. ITT Corp., 984 P.2d 1138, 1144 (Az. 1999). As my law students know, "consideration" is a legal term of art, and generally means a "bargained for exchange." In the context of modification of existing agreements, this often involves new financial terms or mutual concessions in the parties' respective duties.
But, the real-life situation is that the party with the greater bargaining power simply ignores the bargaining process altogether. In employment contexts, that's the employer. They treat their notice of major changes as "the new agreement" simply because no one objected. That's not how the rule of law is supposed to work, but it does, all too often. Indeed, I will confess that the very reason I started teaching Contract law was my growing familiarity with disputes in senior living scenarios that made me wonder if there was something about contract law I'd missed back in my own days as a law student. There wasn't (although the full explanation would require a law review article) -- but the world keeps spinning along with the more powerful party in many commercial contexts able to avoid the contract because they are "in charge."
Residents don't, however, have to put up with this. Resident groups in individual CCRCs and those living in states where there are regional organizations have learned to flex their considerable muscle, both in negotiations with management and with state regulators or legislators. I'm also hearing from more attorneys who are representing residents in negotiations, or when necessary, in arbitrations or on lawsuits alleging breaches of contract and fiduciary duties. Plus, I'm hearing from more states officials who are asking good questions.
It not a secret that I like CCRCs and I like them a lot. I've visited CCRCs throughout the U.S. and they tend to be vital examples of senior living, offering community engagement, social networks, friendly-settings, caring service providers, and the reassurance of assistance if needed. Many forms of senior living options are struggling with the impact of the pandemic, with enhanced pressures on facilities to balance their budgets. This is probably triggering a new upswing in attempts to make unilateral changes.
I have worried, long before the pandemic, that an episodic history of paternalistic or peremptory changes by management in CCRCs can undermine public confidence in this format as a viable alternative for seniors. CCRCs have their highest value for consumers when residents are making the transition before becoming too frail to appreciated the amenities and services. New residents may be unlikely to "invest" in CCRCs if they lack confidence that promised services will be available when needed.
June 3, 2021 in Consumer Information, Current Affairs, Estates and Trusts, Ethical Issues, Health Care/Long Term Care, Housing, Property Management, Retirement, State Cases, State Statutes/Regulations, Statistics | Permalink | Comments (0)
Thursday, May 20, 2021
Colorado: "Former Police Officers" Facing Criminal Charges For Conduct in Arrest of Woman with Dementia
On May 19, 2021, the District Attorney's Office covering Loveland Colorado announced criminal charges against two officers who had already been removed from the force after details became public about their June 2020 arrest of a 73 year-old woman with dementia. The primary arresting officer was charged with second degree assault causing bodily injury, attempt to influence a public servant (both being felony charges) and official misconduct, a misdemeanor, while a second officer who arrived midstream, was charged with misdemeanors, of "failing to intervene" in a case of excessive force, failing to report the use of force, and official misconduct, according to records from the DA's office.
More details here:
May 20, 2021 in Cognitive Impairment, Crimes, Current Affairs, Discrimination, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, State Cases, State Statutes/Regulations | Permalink | Comments (0)
Monday, May 17, 2021
Families in Texas have been hard at work the last two years, responding to the deaths of loved ones in Dallas-area senior-living communities who may have been killed by a serial murder suspect. Organizing under the name "Secure Our Seniors Safety," they have pressed for an array of legislation to compel care-giving communities to provide greater accountability, including reporting suspicious activity such as employee concerns, where there is potential risk to vulnerable adults. One of the bills, "Marilyn's Law," or HB 723 was named after one of the suspect's victims. Marilyn's daughter had initially been told her mother, who was living in a care center, had died of "natural causes." The death certificate was later amended, but the daughter only learned from news reports that her mother may have been one of the suspect's victims, suffocated with a pillow.
From a recent Dallas News article:
The first bill filed in response to a string of slayings at Dallas-area senior living communities passed the Texas Senate on Thursday and now awaits Gov. Greg Abbott’s signature.
For the families who say their loved ones were killed by a serial murder suspect, it’s a moment more than two years in the making. . . .
The bill passed Thursday is named for Pangburn’s mother, Marilyn Bixler. Marilyn’s Law, or HB 723, was introduced by two Collin County lawmakers — Sen. Angela Paxton and Rep. Jared Patterson — after The Dallas Morning News first reported Pangburn’s story.
The new law will require officials to notify next of kin if a cause of death is amended.
The bill was signed into law by the Texas Governor on May 15, 2021.
Chemirmir, a suspect in at least 17 murder, theft or attempted murder cases, awaits trial because of delays related to Covid-19, according to news reports, including national news profiles.
For more on related legislation pending in Texas, see "Death Certificate Bill Filed in Response to Chemirmir Case Passes in Austin."
May 17, 2021 in Crimes, Current Affairs, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Health Care/Long Term Care, Housing, State Cases, State Statutes/Regulations | Permalink | Comments (0)
Sunday, May 16, 2021
The ABA Journal recently ran an article, As the legal profession ages, dementia becomes an increasing concern. "There is no comprehensive information about how often ethics officials and lawyer assistance programs deal with lawyer dementia, according to Bloomberg Law. But the percentage of lawyers older than age 65—about 14%—is higher than the 7% of workers generally in that age group, suggesting that the problem could be worse in the legal profession." The article discussed the potential difficulty for identifying lawyers who may have dementia as well as the variety of state requirements regarding the obligation to notify the disciplinary authority of an attorney who may have dementia. ABA ethics opinion 03-429 is discussed, as well as the Illinois story of Robert Fritzshall.
May 16, 2021 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, Legal Practice/Practice Management, State Statutes/Regulations | Permalink | Comments (1)
Monday, May 10, 2021
This semester at Dickinson Law, I've been teaching a comparative law module on Social Security Benefits. We've been spending more time than usual examining issues associated with basic "retirement benefits" rather than the more complicated topics of Social Security Disability (SSD) and Supplement Security Income (SSI) benefits.
A group of us ended the semester with an interesting hypothetical. Imagine that a retired, older client has a DWI -- his second within some number of years -- involving property damage and, thankfully, no direct endangerment to anyone's life or safety. Assume a damaged mailbox or telephone pole. The state law might treat that as a misdemeanor, but because it is a second offense, it could still mean substantial jail time. The client is thinking about pleading guilty, even if the sentence is 60 to 90 days. The older client might be thinking "the faster I get this over, the faster I can get home and headed back in the right direction with my life."
Do lawyers advise such clients of the potential impact of incarceration, whether in a jail or prison, on his or her right to receive basic Social Security benefits? This was a new topic for me and of course that sent me scurrying for information. Here's what I've read so far:
- The Social Security Administration has a December 2019 brochure, entitled "What Prisoners Need to Know."
- Federal statutory law currently provides, at 42 U.S.C. Section 402(x)(1)(A), that "no monthly benefits shall be paid" to any individual who is "confined in a jail, prison, or other penal institution or correctional facility pursuant to his conviction of a criminal offense" for 30 continuous days or more. Does this mean the trigger for loss of benefits is 30+ days of confinement for any crime, even a misdemeanor? While a related regulation, at 20 CFR Section 404.468, provides that no monthly benefits shall be paid if the confinement is for a "conviction of a felony," (my emphasis added) it may be that regulation's language reflects pre-1999 statutory law. See e.g., amendments to Section 402(x) set forth in P.L. 106-170 (Dec. 17, 1999), 113 Stat. 1860, an act with the ominous name of "Ticket to Work and Work Incentives Improvement Act."
- Cases explain that since 1983, the statutory mandate to suspend payments applies to basic retirement benefits, as well as SSD and SSI, and can also trigger a demand for refunds of any SS program funds "overpaid" during confinement, potentially reducing any future benefits the individual would otherwise receive once out of jail. See e.g., Zipkin v. Heckler, 790 F.2d 16 (2d Cir. 1986).
- Attempts to challenge the application of Section 402(x) by arguing the law violates substantive due process, equal protection or is unconstitutional as a bill of attainder or ex post facto law have not met with success. See e.g., Butler v. Apfel 114 F.3d 622 (9th Cir. 1998).
Back to our hypothetical. The client might be planning to go home after 30, 60, 90 days or more in jail, but what if the client was depending on SS retirement income -- reflecting his life-time work record -- in order to keep making house payments for that time?
Originally the theory of suspending federal SS payments focused on "disability" payments, because the confined individuals were being maintained at public expense and their inability to work is a consequence of their criminal conviction, not their disability. But what of the 1983 amendment, expanding the suspensions to SS retirement income? In the Zipkin case linked above, at page 18-19, the Second Circuit rejected any distinction:
"We can perceive no reason why prisoners whose retirement benefits are suspended would have a need for replacement of income while prisoners whose disability benefits are suspended do not. Rather, prisoners, as a group, do not have the need for a continuing source of income that nonprisoners typically may have. . . . Social Security retirement benefits are designed to satisfy certain baseline economic needs, reasonably predictable when a worker retires. . . . They are not benefits held in trust and payable per se."
It is a tough world, right? But does it need to be this tough? According to the Social Security Administration's recent statistics, among elderly Social Security beneficiaries, "21% of married couples and about 45% of unmarried persons rely on Social Security for 90% or more of their income." Feel free to add your own thoughts in the "comments."
Tuesday, May 4, 2021
I've had several recent opportunities to talk with individuals serving as primary caregivers for family members who have varying stages and types of neurocognitive disorders, including but not limited to age-associated dementia. One common concern in these conversations has been "that could have been my family member."
They are referring to news reports and body-cam videos of two officers in Loveland, Colorado in June 2020, as they apprehended, handcuffed, and took down "in a controlled manner" (the officers' description) a disoriented 72-year old woman. The officers were intent on arresting the woman following a report of her alleged "shoplifting" attempt of $14 dollars' worth of items at a local Walmart.
According to the federal civil rights suit filed on April 16, 2021, the actions of the police officers fractured Karen Garner's left arm, dislocated her shoulder, and terrified her. She was left for hours, crying and begging to go home while handcuffed in a booking cell, with no medical assistance offered or provided. One booking room video shows the officers laughing and commenting about the body-cam footage.
Such conversationa explained what many caregivers were thinking about when they learned what happened to the "frail little thing" (the officer's word), the 5 foot tall, 80 pound woman who had earlier been diagnosed with "mild" dementia:
- It could have been a lawyer's uncle, who has PTSD following return from tours of military duty and an IED injuty in Afghanistan;
- It could have been a colleague's father, who was diagnosed with FTLD causing him to lose inhibitions, sometimes involving confusing behavior in public;
- It could have been an older friend who recently needed help because she could not find her way through the "new" self-checkout system at the grocery store;
- It could have been a member of my family, as my sister related to me a story I had not heard before, about how our mother, distracted by a cell-phone call, walked out of a grocery store without paying for groceries and didn't realize that until after she had loaded them into her car;
- It "was" a man in his 60s with early onset dementia who wandered away from his home one night, only to be arrested for loitering and placed in a special containment area of the jail, where he was beaten to a pulp during the night by his cellmate (as I have written about before, here).
May 4, 2021 in Cognitive Impairment, Crimes, Current Affairs, Dementia/Alzheimer’s, Discrimination, Elder Abuse/Guardianship/Conservatorship, Estates and Trusts, Ethical Issues, Federal Cases, Federal Statutes/Regulations, Health Care/Long Term Care, State Cases | Permalink | Comments (1)