Tag Archives: Elder Law
Karen Levy, Lauren Kilgour, & Clara Berridge, Regulating Privacy in Public/Private Space: The Case of Nursing Home Monitoring Laws
, 26 Elder Law J.
__ (forthcoming 2018) available at SSRN
A nursing home can be a dangerous place. Undetected abuse and neglect are common. Frustrated with the inadequacy of government oversight, some families have taken matters into their own hands and installed in-room video monitoring devices. In this way, privatized abuse prevention efforts can identify and rectify that which the camera records. The increasing use of so-called “granny cams” has led to legislative responses in at least six states—Illinois, New Mexico, Oklahoma, Texas, Washington, and Utah. These statutory frameworks are thoughtfully examined by Karen Levy, Lauren Kilgour, and Clara Berridge in their forthcoming article, Regulating Privacy in Public/Private Space: The Case of Nursing Home Monitoring Laws.
The covert use of technology such as web-enabled video cameras to “peek in” and also preserve evidence of inadequate care, abuse, or exploitation may be well-intentioned. The overt placement of cameras might help to deter abuse from occurring in the first place. Privacy and autonomy concerns, however, might be overlooked. As these three co-authors explain, the interests of the resident, their roommates, their visitors, and their care workers—even, to some degree, the institutions themselves—merit scrutiny: “These multivalent privacy dynamics create a complicated space for law.” (P. 3.) Indeed, this complex relational space has given rise to strikingly varied legislative fixes. Levy, Kilgour, and Berridge study a relatively unstudied problem with sensitivity and thoroughness.
Initially, this article enters the nursing home setting and explores the relational, interdependent nature of privacy in that space. A nursing-home room is an intimate, personal space for the often vulnerable individuals who live in them. In that space, residents (as well as their roommates) may receive personal care. They may share intimacy with their partners. They may be examined by their doctors. They may change clothes. They may masturbate. A nursing home room can also be a private space for parties visiting those individuals, such as their spouses, their children, or even their attorneys. At the same time, a nursing home room is a closely regulated space where states monitor and structure conduct, especially that of staff. “Electronic monitoring in nursing homes, and the rules which regulate it, thus enter a particularly fraught context, in which the aims and targets of privacy protection, and the perceived threats thereto, are multivalent and interact in complex ways.” (P. 6.)
Having detailed the unique privacy intersections within a nursing-home room, the authors next assess how the law has entered that fraught space. Here, the authors deploy a comparative analysis and identify the salient aspects of the varied approaches that six states have taken. While each statutory paradigm permits in-room monitoring devices by a resident or their representative, the authors highlight significant variation in the ways in which competing privacy interests are balanced. Some states delineate notification and consent forms. Some attempt to police against institutional retaliation. Some require signage or ban covert cameras. Some permit roommates to switch rooms when a camera is introduced. Some constrain the positioning (e.g., allowing only fixed-position cameras) and precision (e.g., focus, volume, etc.) of data collection. New Mexico requires data encryption when a monitoring device is web-enabled. Utah simply bans any device which can transmit recordings. State approaches lack uniformity in addressing the admissibility of recordings in judicial or administrative proceedings. Abuse-reporting requirements and liability limitations vary as well.
Finally, the authors map privacy relationships within these legislative approaches. A significant number of nursing home residents may lack the capacity to consent to in-room monitoring or to condition consent upon limitations. The majority of the statutes analyzed by the authors confirm that a resident’s fiduciary (such as an agent or a guardian) can consent to recording on the resident’s behalf. Washington, interestingly, permits residents’ representatives to authorize visual video monitoring, but not audio, absent a court order.
Sadly, the most common perpetrators of elder abuse are adult children and spouses. These are the individuals typically acting as elderly individuals’ representatives. As a result, the most likely perpetrators are the ones collecting recordings. For the most part, states have failed to account for potential abuse by a representative. Mistreatment by a representative is unlikely to be captured by a monitoring device, and if it is, the representative controls the captured data. Indeed, a representative might use embarrassing footage to intimidate or extort. This potential for misuse must be carefully balanced against gains in documenting abuse by nursing home staff or others, but so far it hasn’t been adequately considered.
Regulating Privacy in Public/Private Space: The Case of Nursing Home Monitoring Laws is an important and elucidating discussion of these kinds of important policy issues. Its comparative mapping could serve as an effective guide to future legislative efforts. And its explication of competing privacy interests demonstrates a mature sorting of recurring intersections of human interests in the nursing home space. I recommend it.
Cite as: Tom Simmons, Privacy and Surveillance in Nursing Homes
(October 8, 2018) (reviewing Karen Levy, Lauren Kilgour, & Clara Berridge, Regulating Privacy in Public/Private Space: The Case of Nursing Home Monitoring Laws
, 26 Elder Law J.
__ (forthcoming 2018) available at SSRN), https://lex.jotwell.com/privacy-and-surveillance-in-nursing-homes/
John H. Langbein, Absorbing South Australia’s Wills Act Dispensing Power in the United States: Emulation, Resistance, Expansion
, 38 Adelaide L. Rev.
1 (2017), available at SSRN
Yale’s Professor Emeritus John Langbein, who introduced the harmless error idea to will formality requirements a few decades back, returns to the place where it all began in Absorbing South Australia’s Wills Act Power in the United States: Emulation, Resistance, Expansion. It began, legislatively speaking, in South Australia. In 1975, South Australia’s State Parliament enacted a statute validating wills with formality defects so long as it was proved that the decedent intended the document to be her will. This “dispensing power” idea soon infected other common law nations, including the United States. Now, a new chapter is being written as a fresh trend emerges: making bequests via electronic technology.
Following a concise review of the common law world’s absorption of Australia’s innovation, sustained through legislative activity, case law, and scholarship, Langbein turns to “a completely unforeseen development – the enforcement of so-called digital or electronic wills.” (P. 1.) A harmless error in the execution of a will should not result in invalidation if there is convincing evidence that the decedent truly intended the document in question to constitute her will. A defect in the “line of sight” or “conscious presence” requirements for witness attestation, for example, ought not to invoke intestacy where other evidence convinces us that the decedent was trying to make a valid will. Today, we are beginning to see a new variety of technically deficient wills – paperless ones. Is the harmless error doctrine equipped to deal with digitized bequests? Or is a new framework for electronic wills necessary? Langbein deftly considers these important questions in this compulsively readable reprinting of a lecture he delivered in Australia in 2017.
The Uniform Law Commission recently created a drafting committee to respond to the phenomenon of digital testation. The Committee’s first drafting meeting memo neatly sums of the issue: Why not electronic wills? After all, “everything else is electronic.” Langbein concurs, noting that many individuals are so acclimated to digital forms of communication “that they seldom encounter sheets of paper in their daily lives.” (P. 9.)
Two variations of digital wills should be identified. In the first instance, an individual makes an electronic document with word processing software saved on a tablet, a phone, or a USB stick. In the second, a decedent has left either an audio or video recording of a testamentary plan; a DVD will. Although merely oral wills are invalid in most jurisdictions (and where they are recognized, they’re strictly limited to situations such as deathbed bequests), Langbein has collected a few cases holding DVD wills to be valid. True, a DVD disc might not be what we typically think of as a “document.” Yet it is a tangible form of the communication intentionally preserved so that its form survives its creation. And given the liberal construction given to remedial legislation such as harmless error statutes, a DVD could be treated as a kind of document.
With word processing wills, we’re on more familiar ground. Especially where the wording of the file strongly suggests testamentary intent (e.g., “This is my last will and testament”) and something akin to a signature can be located, the harmless error rule is comfortably stationed. Some states have legislatively endorsed electronic wills. In Nevada, testamentary bequests created and saved as an electronic record are valid. The statute, however, also imposes a new formality likely to foul up do-it-yourselfers: an “authentication characteristic” (which might be, for example, a retinal scan or fingerprint). Langbein notes: “It is particularly ironic that the dispensing power, which has opened the way to enforcing digital wills by excusing noncompliance with the traditional Wills Act formalities, is begetting new formalities.” (P. 11.) Harmless error begets digital wills which beget new formalities, which harmless error doctrine can excuse.
If a framework specifically designed for digital wills is appropriate, one of the more difficult issues to resolve will be revocation formalities. In traditional wills land, a will may be revoked either by a later will or by a physical act of revocation performed on the instrument itself, such as tearing or burning. The first category of revocations can be easily implemented with digital wills, but what of physical acts of revocation? “Suppose,” Langbein posits, “that the testator who has drafted a computer will erases it, but a software expert is able to recover from the text from the hard drive?” (P. 11.)
Professor Langbein’s article tracks the problems of these computer wills. He confesses, “I would be quite content if this intrusion into the accustomed patterns of testation were not happening.” (P. 11.) The frequency with which individuals attempt to make a testamentary disposition with digital technology will only increase, however. E-bequests will continue. Harmless error doctrine can – and is – handling some cases, but as the frequency increases, legislation specifically crafted for E-bequests will be inevitable.
Cite as: Tom Simmons, Dispensing (With) Electronic Wills
(April 5, 2018) (reviewing John H. Langbein, Absorbing South Australia’s Wills Act Dispensing Power in the United States: Emulation, Resistance, Expansion
, 38 Adelaide L. Rev.
1 (2017), available at SSRN), https://lex.jotwell.com/dispensing-with-electronic-wills/
Alexander A. Boni-Saenz, Sexual Advance Directives
, 68 Ala. L. Rev.
1 (2016), available at SSRN
May an individual consent to sex in advance of incapacity (or intoxication)? Can an individual consent prospectively to intercourse? Should we only recognize consent given contemporaneously with the sexual act? These are straightforward questions which reside within core human needs and autonomy, yet few have considered them in the elder law context. Consensual sex has been explicated by juries, lawmakers, and scholars with practically endless variations, but a temporal dimension to sexual consent has not.
A sexual advance directive might read: “I hereby consent to vaginal intercourse with my spouse upon and during my incapacity.” Advance directives are statutorily authorized for healthcare. What about for sex? Professor Boni-Saenz makes a convincing case for answering “yes!” in Sexual Advance Directives. An individual facing dementia may want to continue to have sex with her partner even after dementia has diminished or destroyed her capacity. If prospective sexual consent is invalid, her partner would be guilty of rape for an act of penetration with her even if she had unambiguously extended pre-incapacity consent.
Individuals may want to grant prospective consent to sex for different reasons. As Boni-Saenz observes, “They might have an interest in enabling sexually fulfilling lives for their future disabled selves, in preserving important sexual identities or relationships, or in protecting spouses from criminal prosecution for rape.” (P. 4.) An individual’s right to have intimate relations with the person of her choosing is so fundamental that we should consider carefully whether the right should be suspended by dementia if the individual thoughtfully considered the possibility of incapacitated sex while she was still competent. The questions posed by Boni-Saenz get at the basic concept of self. If a present-self consents to a future-self’s sexual act, has the individual consented?
This kind of abstract problem might interest some, but it can also be framed in concrete terms. It is an important practical question: Should we recognize an individual’s attempt to consent prospectively to sex? If the question is framed as an individual right, it is difficult – but not impossible – to argue that the right should be denied persons with advanced dementia, traumatic brain injuries, a stroke, or senility.
These kinds of questions, though, as difficult as they are, are actually more problematic than they might initially seem. We tend to think of dementia or incapacity as a light switch, either on or off. The law treats incapacity in fairly absolute terms: one has capacity or one doesn’t. In reality, a loss of capacity almost always appears in gradations of grey, not as either black or white. While an “on or off” of incapacity is legally convenient, it is biologically inaccurate. Many individuals without capacity can articulate their desires. Moreover, sexual disinhibition is often undiminished by dementia.
Hypothetically, let’s say, I once had a client with a diagnosis of early onset Alzheimer’s. She delivered a directive to her caregivers for the time when she would lose capacity. She wanted, she told them, to enjoy replays of her favorite television program, Gunsmoke. She was sure that this would give her comfort as she lost the ability to articulate her wants. Inevitably, she declined and lost capacity. Her caregivers dutifully played Gunsmoke for her, but the tapes were distracting, even distressing, to her. She angrily complained that the words “all ran together.” I’ve been told that this is a common complaint for dementia patients. Closely-spaced television dialogue can become indecipherable and even terrifying to individuals with dementia. If the caregivers had been bound to continue to subject her to Gunsmoke reruns, my clients’ former-self would have, in effect, infringed on the autonomy of her present-self.
The same kind of quandary with a sexual advance directive is even more important – and disquieting.
Next, Boni-Saenz injects another problem. Along with advance directives, healthcare proxies are among the most commonly utilized tools for elder law attorneys. A healthcare proxy is a kind of durable power of attorney which appoints a surrogate decision maker over healthcare decisions. These instruments permit an agent, such as a trusted friend or family member, to grant – or withhold – informed consent in various medical situations if the principal has lost capacity. (The “durability” of a power of attorney refers to its effectiveness notwithstanding incapacity, a statutory reversal of common law agency principles.) Not uncommonly, a healthcare agent is faced with whether to terminate artificial means of life support on account of a terminal or vegetative condition of their loved one – whether to “pull the plug.”
If sexual advance directives are permitted to prospectively grant (or deny) consent to physical intimacy, then, by extension, sexual powers of attorney are also warranted. Vesting a trusted agent with the power to consent (or refuse) intimacy goes partway toward ameliorating the inherent problem of an advance directive; the difficulty of responding to unanticipated circumstances. With a healthcare proxy, an agent’s determinations can take account of evolving issues in ways that a static (and perhaps stale) declaration cannot.
In most cases, the named agent under a healthcare proxy will be a spouse or partner, with a successor agent named in the event of the primary agent’s unavailability; typically an adult child. Agents are named on the basis of occupying positions of trust and familiarity with the principal’s wishes. Spouses and children frequently fit the bill.
Now envision a husband-agent making the decision on behalf of his incapacitated wife-principal about whether to consent to have sex with him. He will – as agents often do – wear two hats. It’s the same conflict of interest scenario from numerous fiduciary cases, but of a particular kind heretofore unexplored by agency law, or criminal law, for that matter. And what if an adult child is the agent? Picture a daughter faced with the decision of sexual consent on behalf of her aged mother.
There’s much more in Sexual Advance Directives; it is highly recommended reading.
Rebecca Dresser’s A Fate Worse than Death? article raises profound questions. Scientists have known for some time that certain biomarkers (specifically, elevated tau and beta-amyloid levels) correlate with elevated risks for Alzheimer’s disease. Soon, patients may learn about their own increased probabilities for developing this deadly and dehumanizing disease. This knowledge might cause these patients to adopt advance directives that reject spoon-feeding upon the arrival of advanced dementia. Some preemptive suicides may result. Dresser considers whether we should endorse or recoil from these responses.
Dresser’s analysis anticipates a time when biomarker information relative to Alzheimer’s disease risks is routinely made available to asymptomatic patients. Whether to disclose Alzheimer’s disease biomarker results is still controversial. The tests are imperfect. Dresser examines a study of 311 participants that revealed an eleven to twenty-six percent chance of developing Alzheimer’s disease within five years based on elevated tau and beta-amyloid levels. Many individuals with biomarkers for Alzheimer’s never develop Alzheimer’s (perhaps due to mortality from other causes, perhaps due to other protective factors). Scientists still lack a clear understanding of the relationship between neuropathological patterns and the clinical occurrence of Alzheimer’s disease. Because the tests for pre-symptomatic Alzheimer’s remain unproven, some experts assert that the tests should be deployed only in a research context. With patient demand, however, more and more people are likely to learn their biomarker results in the years to come. Their likely responses lead us to critical legal questions.
Individuals may respond to news of any terminal illness by making more extreme advance directive selections. Some may even consider self-destruction. But a diagnosis of Alzheimer’s disease gives rise to unique considerations. A person with cancer can defer serious thoughts of suicide until the disease overtakes her. An individual with Alzheimer’s disease (or other similar neurological decay) might conclude that she cannot afford a wait and see approach. “Suicide takes relatively sophisticated planning, as well as a strong commitment,” Dresser explains. (P. 658.) As Alzheimer’s progresses, cognition is compromised. The capacity for self-destruction may itself be destroyed, or the individual “may lose interest in doing so.” (Id.) Therefore, persons with an Alzheimer’s diagnosis or a biomarkers prediction are more likely to consider preemptive suicide.
Policymakers should discourage suicide based on Alzheimer’s disease biomarker predictors, Dresser asserts. As a legal matter, it’s an uncontroversial assertion: The great majority of states still criminalize assisted suicide. Those that permit it carefully constrain its availability to narrow sets of circumstances and impose significant government oversight.
Dresser’s more stilling query is whether we should permit competent individuals with positive Alzheimer’s disease biomarkers greater authority over their future care than the law currently recognizes. Advance directives derive from the basic right to refuse unwanted invasive medical treatment. Advance directives instruct care providers, in advance of a later incapacity, to withdraw life-sustaining treatment in the event of a vegetative or terminal condition. An advance directive becomes operative at a point in time when the patient is unable to make or communicate a healthcare decision. (Prior to that time, the patient retains autonomy over her own healthcare decisions by simply communicating her preferences, idiosyncratic or not, to her doctors.)
The varieties of artificial means of life support that are typically addressed in an advance directive (and authorized by the Uniform Health-Care Decisions Act) include antibiotics, chemotherapy, and mechanical respiration. An advance directive can also document an individual’s refusal of nutrition delivered intravenously (“tube feeding”). Tube feeding is a kind of medical treatment. Typically, it is delivered through the abdomen. State laws often clarify that tube feeding may not be withdrawn (even if the pre-incapacitated patient directed) when withdrawal would cause discomfort. Palliative care is one exception to the breadth of advance directives recognized by state law.
Aside from comfort concern limitations, state laws honor the advance refusal of tube feeding. Dresser considers whether an advance refusal of assisted feeding should also be recognized. In some instances, withholding food and water is medically appropriate because the patient has difficulty swallowing, chokes, or experiences discomfort when eating. No court or state legislature has yet considered advance refusal of sustenance by oral feeding. With the projected increasing ability of individuals to assess their own likelihood of experiencing the cognitive decay associated with Alzheimer’s disease via biomarker tests, more and more patients may include assisted spoon-feeding among the treatments they refuse in the text of an advance directive.
Because spoon-feeding is not as invasive as other medical procedures, it is unlikely that a court would find it to be a constitutional liberty interest. Cruzan v. Missouri (U.S. 1990) recognized an incapacitated person’s liberty interest in a pre-incapacity refusal of medical treatment. Government “invasions into the body” are repugnant to substantive due process, emphasized Justice O’Connor, concurring. Spoon-feeding cannot be characterized as a bodily invasion, so there would seem to be no constitutional imperative to give effect to an advance refusal of oral feeding assistance. Recognition would have to come in the form of expansions to state advance directive statutes.
Is the difference between intravenous feeding and assisted feeding only a matter of degree? Perhaps the difference represents a fundamental matter of personal autonomy – where moral considerations shift from the pre-incapacity articulated preferences of an individual to what the majority sees as being in that individual’s best interests. Perhaps not. Perhaps we should consider measures that give effect to individuals’ pre-dementia directions regarding spoon-feeding. Dresser, a Professor of Law as well as a Professor of Ethics in Medicine at Washington University in St. Louis, believes that “[t]he availability of [Alzheimer’s disease] biomarker tests could increase public support for such measures.” (Pp. 666-67.) Professor Dresser’s short article raises important questions that we will likely face with increasing frequency in the near future. “How to die” may become the next fundamental debate in elder law.