Tuesday, May 26, 2020
George Washington Law Professor Naomi Cahn recently shared a piece by Israel-based law and policy author Barbara Pfeffer Billauer on "Al Tashlichaynu L'Et Zichna: Ageism in the Time of Corona." This thoughtful piece begins with a theme I've been discussing with others, how close to dystopian science-fiction the last 10 weeks have seemed. She makes the opening comparison of current policy-based decisions to the science-fiction movie Logan's Run, where the "acceptable" price paid for a civil society was a mandatory limit on life spans -- to just 30 years. Professor Pffeffer Billauer observes "In this world of COVID, the age of devitalization is a bit older. But us oldsters are subject to truncation just the same."
It’s time to expose the flawed basis on which morbidly dystopic and discriminatory responses toward the aged have been become public health policy– both as a warning that initial and instinctive public health responses must be constantly re-evaluated and updated – and as an alert that discriminatory responses can be couched as public health concerns, even as their main purpose is to further political goals.
At first glance, “protection of the vulnerable” seems laudatory and compassionate. Nevertheless, this approach should trigger concerns of discrimination. In the case of age-related discrimination, the dangers are, perhaps, exacerbated, as those affected are more likely to just accept it. Others accept these pronouncements without delving into the “scientific” or epidemiological underpinnings of the pronouncements. Even worse, is that rationale that might, in actuality, be political can be camouflaged as nobly “helping the needy.”
Professor Pfeffer Baillauer warns that even as governments begin to ease virus-related restrictions, in many instances "the 'vulnerable' (aka the elderly)" are still locked down, and that the "differential relaxation of lockdowns is problematic, both from legal and public health perspectives."
Based purely on early (and stagnant) reports, we bought into this protectivist age-related response: The elderly were — and are — to have their liberty disproportionately restricted –because they are considered “vulnerable”. It’s time to question this approach and unmask the rank discrimination behind it, or at the very least, reveal the dangers of blind acquiescence without serious inquiry into the scientific basis.
She questions the statistical basis for some governments' decisions to impose mandatory isolation:
The Italian debacle, notably lots of deaths, was attributed to their older population. But these pronouncements were based on gross, oversimplified statistical calculations. Germany, with a similar age distribution, suffered far fewer deaths. So did Japan, with a population even older than Italy’s . Compare the case-fatality in Italy of 14% (as of March 19) with that of Germany (at 4.5%), or the even older Japanese demographic with a similar case-fatality (4.7%). Basic tools of epidemiological assessment, such as standardized age-adjusted rates, appear not to have been performed to sustain the extrapolation of the Italian experience to other countries. Basic epidemiological constraints, such as the ecological fallacy, were never even considered.
But there is more to the misleading assertion that the elderly are at greater risk than just flawed statistics. The approach obscures the key question: greater risk of what? Of disease susceptibility, of spreading it to others – or of dying?
She is provocative. She notes that if there is legitimacy to mandating isolation of the elderly based on nursing home statistics on infection and death, perhaps the same rule should be assigned to the "financially flush," such as those who make up the majority of cruise ship passenger rosters, whether or not they are embarked on an actual cruise.
For more, read the full blog post linked above. For MUCH more, keep an eye on Barbara's SSRN account for her next piece. Thanks, Naomi, for another great share!
May 26, 2020 in Advance Directives/End-of-Life, Consumer Information, Current Affairs, Discrimination, Ethical Issues, Health Care/Long Term Care, Housing, International, Statistics | Permalink | Comments (0)
Monday, May 25, 2020
On Memorial Day, we have important opportunities to think. Today, I've been thinking about those lost in wars and those who survive. A year ago, I joined a group doing a World War II memorial tour of England and France. I was unprepared for how much walking the beaches at Normandy and the nearby cemeteries would affect me. Even though my family was not directly impacted by that war, it was a reminder that we are all affected by tragic losses of life.
Today I also just read a very thoughtful piece written by Marcella Goheen for the New York Times. An image of another war emerges. She explains how her husband at age 65 has been affected by a neurodegenerative disorder that makes it impossible for him to care for himself, and eventually became so severe that it also was impossible for her to care for him at home. We forget that "nursing homes" are often not just for the very elderly, and can become the short-term or long-term homes of anyone with severe disabilities. But that doesn't mean that people go there "to die."
There is life in a nursing home. My husband worked in special education for over 20 years. He understands deeply the value of a life, no matter what form that life takes. He would fight for his fellow residents if he could. I feel betrayed because, while leaders like Gov. Andrew Cuomo and Mayor Bill de Blasio were speaking in their daily news conferences of the “vulnerable population” that needed the most help, not one federal, city or state agency prioritized preventing the loss of life in nursing homes. Instead, officials fought over whose responsibility it was to serve the chronically ill, elderly and disabled people who live in New York State nursing homes. In a mid-April news conference, Governor Cuomo said that “it’s not our job” to provide personal protective equipment to nursing homes in New York City.
My husband was thrown into a war on the vulnerable without a chance — he cannot care for himself or protect himself from a virus that doesn’t have a vaccine. The fact that he is still alive is a miracle. As of May 10,it was likely that over 5,000 residents in nursing homes statewide had perished. They matter. To be given a chance to live is a human right, and the business of care that impedes this right in any way needs a major reckoning. Not testing health care workers and residents, not addressing staffing shortages, not updating families on loved ones’ conditions and not producing effective plans for managing infections within nursing homes is unacceptable.
There is much more to The Crisis at My Husband's Nursing Home, where she reports that 98 have died with diagnoses of Covid-19.
Sunday, May 24, 2020
Is What CMS Doesn't Say as Important as What CMS Does Say in Recommendations for "Reopening" Nursing Homes?
On May 18, 2020, Centers for Medicare and Medicaid Services (CMS) released a ten-page Memorandum making recommendations to state and local officials for operation of "Medicare/Medicaid certified long term care facilities (hereafter 'nursing homes') to prevent the transmission of COVID-19."
In some ways, nursing homes may be breathing a sigh of relief as the memo does not use any mandatory language directed at the operators. In some instances CMS identifies "choices" for the states, such as whether to require all facilities in a state to go through reopening phases at the same time, by region, or on individual bases. The memo says that facilities "should" have CDC-compliant testing plans, including "capacity" for all residents and staff members to have a single baseline test with retesting until all test negative. What does that mean? You should be able to test everyone before you ease visiting restrictions, but you can choose not to do so? On page 4, CMS cross-references ("cross-walk") to reopening phases for all "senior care facilities" under President Trump's Opening Up America Again plan. The document describes "surveys that will be performed at each phase" of the reopening process, referring to the states' obligations to conduct surveys on prioritized timelines, although with no hard numbers for such oversight suggested.
CMS recommends that each nursing home "should spend a minimum of 14 days in a given phase, with no new nursing home onset of COVID-19 cases, prior to advancing to the next phase," and CMS says states "may choose to have a longer waiting period (e.g., 28 days) before relaxing restrictions for facilities that have had a significant outbreak of COVID-19 cases."
Significantly, there is nothing in the latest CMS guidelines regarding staff members who work at more than one facility, thus posing a clear potential for cross-contamination. That seems to me, at least, especially short-sighted.
May 24, 2020 in Consumer Information, Current Affairs, Ethical Issues, Federal Statutes/Regulations, Health Care/Long Term Care, Medicaid, Medicare, State Statutes/Regulations, Statistics | Permalink | Comments (0)
Friday, May 22, 2020
Lawyering Challenges in Pandemic Times: How to Tell Clients What They Don't Want to Hear about Waivers of Liability
Recently, I had two overlapping communications. One was via email, with a lawyer who is advising community groups on whether, how, and when to reopen summer activity programs for children. The second was by phone, when a gym I belong to called to advise it was reopening in a few days and would honor my prepaid short-term membership, the otherwise expired membership I'd just happened to purchase on February 1. One condition of returning to the gym would be my signature on a Covid-19 specific release of liability. These conversations caused me pause, in part because I teach Contracts, a first year course, and we often discuss the viability of "releases of liability."
In connection with the first conversation, I reread and shared a copy of a Pennsylvania Supreme Court case, Feleccia v. Lackawanna College, 215 A.3d 3 (Pa. 2019). The parties presented two questions to the court: (1) whether the Pennsylvania college was required to have qualified medical personnel present at intercollegiate athletic events to satisfy a duty of care to the student-athletes, and (2) whether an exculpatory clause releasing "any and all liability" is enforceable as to negligence in the absence of any specific reference to "negligence." In a detailed analysis, with two justices filing concurring and dissenting opinions, the Court concluded:
For all the foregoing reasons, we hold appellants [the College parties] had a duty to provide duly licensed athletic trainers for the purpose of rendering treatment to its student athletes participating in athletic events, including the football practice of March 29, 2010, and there is a genuine issue of material fact regarding whether appellants breached this duty. Moreover, although the Waiver bars recovery for appellees' damages arising from ordinary negligence, we hold the Waiver does not bar recovery for damages arising from gross negligence or recklessness, and there remain factual questions regarding whether appellants' conduct constituted gross negligence or recklessness.
I think it is fair to predict that clients who actually seek a lawyer's advice before reopening operations in the wake of easing Covid-19 restrictions are hoping to hear that "a release" will protect them from liability. I think I can also predict that lawyers, in any state, will find it challenging to give legal advice in this environment without significant caveats, especially about the use of releases.
Thursday, May 21, 2020
NYT: Homes with Significant Number of Black and Latino Residents Twice as Likely to Be Hit by Coronavirus
The New York Times offers deep analysis of the impact of race on coronavirus infection rates in nursing homes. A lot to unpack, starting here:
The coronavirus pandemic has devastated the nation's nursing homes, sickening staff members, ravaging residents and contributing to at least 20 percent of the nation's Covid-19 death toll. The impact has been felt in cities and suburbs, in large facilities and small, in poorly rated homes and in those with stellar marks.
But Covid-19 has been particularly virulent toward African-Americans and Latinos: Nursing homes where those groups make up a significant portion of the residents -- no matter their location, no matter their size, no matter their government rating -- have been twice as likely to get hit by the coronavirus as those where the population is overwhelmingly white.
For more issue spotting, read The Striking Racial Divide in How Covid-19 Has Hit Nursing Homes.
Wednesday, May 20, 2020
Under pressure from media and advocacy groups, Pennsylvania's Departments of Health and Human Services have recently published statistics about how many residents and employees at a large number of long-term care facilities have been diagnosed with Covid-19 and how many, if any, have died with the diagnosis. The spreadsheet is interesting, even with redaction of certain information if there is "less than 5" individuals with positive reports, as indicated by an asterisk. I'm linking here to a Spotlight PA article (written by Rebecca Moss for an investigative group that draws from the Pittsburgh Post/Gazette, the Philadelphia Inquirer and PennLive/Patriot-News) that provides part of the backstory on the state's decision to provide public information, along with an embedded link to the State's spreadsheet.
On the one hand, the data is sobering when you see the high numbers of deaths reported at some facilities. On the other hand, I'm intrigued by the number of facilities, including my own county's public nursing home (one of the few such facilities remaining in Pennsylvania) that report either zero or less than 5 total cases and no deaths.
The release of this kind of transparency will be important in the long run -- and help all of us better understand risks of infection in congregate settings, including but not limited to Covid-19. Additional questions focus focus on Pennsylvania's announced new "strategy" to promote universal testing of "all residents" and "all staff" and also to include "all types" of long-term care, regardless of regulatory designation. For more on that, see a WITF-Radio Smart Talk interview pointing to "potential holes" in Pennsylvania state reporting on long-term care Covid-19 infections.
Tuesday, May 19, 2020
One way to frustrate anyone operating an assisted living, life plan community, continuing care community or other congregant living situation is to refer to their centers as "nursing homes." Many people have a fixed, negative mental image of a nursing home. And when it comes to quality of life indexes, senior living settings that offer options for meal arrangements, independent living units, daily activities, participation in off-campus events, recreational outlets (such as swimming, gyms, billiards, or golf), assistance with a range of activities of daily living, assistance with memory-based tasks such as medications, etc., typically defy the negative stereotypes. At least they do for those who actually take the time to visit.
But, sadly, the potential for wide transmission of Covid-19 does not spare the more "active" senior living models. A Philadelphia Inquirer May 18 article reports that Coronavirus Invaded These South Jersey Senior Communities, Despite Managers's Best Efforts. Some of the locations described in the article I recognize as very high-end, continuing care communities. But money alone isn't insulation. How money is used can be a factor. Some especially interesting excerpts from this article:
- A facility’s government quality rating, whether it was a for-profit business, and how much of its budget came from Medicaid, did not predict whether it had cases, said David Grabowski, a health-care policy professor at Harvard University whose study looked at whether nursing homes had any cases, not how many. He said facilities with more staff, PPE and ability to group patients with similar disease status together might have better odds of avoiding major outbreaks.
- Most of [the cases as one continuing care community in New Jersey, known as ] Lions Gate . . . have been in its nursing home, but there have been 18 in assisted living and one in independent living. Their first case was on March 30, again in a staff member. As the numbers mounted, Lions Gate started testing more widely and found cases among people without symptoms. [CEO Susan Love] does not know how the first employee got it or how it spread. The community tried to confine sick patients to one floor of the nursing home and to assign specific employees to care only for them. Some assisted-living residents were also seen by outside private aides and hospice workers. The average age of the 12 residents who died was 93, Love said. Four were on hospice care. Only five residents who tested positive went to the hospital. Most did not want to go
- [At another New Jersey CCRC], seven of the 13 residents who died were on hospice. None wanted aggressive medical care, [Executive Director] Clancy said. He takes comfort in knowing that "we abided by the wishes of every single one of them who passed away.”
The highlighted sentences in the last two paragraphs raise an important concept I haven't seen discussed often in Covid-19 themed articles. A friend of mine who is a lawyer who works outside of aging issues asked me recently why I thought the death rate "in" nursing homes or other senior care facilities was "high." I think one possibility is that such facilities have honest conversations with new residents and their families about "end of life decisions" and it is entirely possible the residents and their family members have given clear, written directions that they do not want to be transferred to hospitals in the event of a life-threatening development.
Monday, May 18, 2020
In 2011, Joshua R. Wilkins, then a graduating student at Dickinson Law, won one of the top awards for a student writing competition sponsored by the National Academy of Elder Law Attorneys (NAELA). Joshua wrote about "Consumer Directed Negotiated Risk Agreements." His introduction began:
Negotiated risk in the assisted living context is a largely misunderstood concept. Opponents and proponents of the concept often fail to agree on fundamental concepts underlying negotiated risk. Similarly, states have enacted legislation authorizing or prohibiting what is described as negotiated risk – however those states have defined the concept so differently than other states that it is difficult to understand the concept as a cohesive whole. Negotiated risk can be broadly defined as the shifting of responsibility for certain consequences between the resident and the assisted living facility. Further concepts of definition vary greatly between lawyers and industry actors, and will be discussed later.
As a polestar, the general opinions regarding negotiated risk should be summarized. Opponents of the concept believe that negotiated risk is an illegitimate and unenforceable imposition upon the rights of assisted living residents by facilities attempting to contract away liability for resident injuries. Proponents color negotiated risk as a method for residents to exercise greater control over their living conditions and tailor the services supplied and guidelines imposed by the resident’s facility.
This paper proposes an alternative approach to negotiated risk that incorporates concerns of opponents of negotiated risk, and the selling points of proponents. A consumer directed negotiated risk agreement – one prepared by the resident’s independent attorney, would assist the resident in directing their standard of assisted living, while protecting their interests. A document of this type would require new state legislation authorizing the enforceability of risk shifting, and also delineating the boundaries that such an agreement could be used for. Additional benefits to this type of negotiated risk is that concerns over resident safety and welfare during the admissions process could be addressed without completely overhauling the market-based approach that is a hallmark of assisted living. Also, because residents seeking negotiated risk agreements would have to enlist the aid of an independent attorney, they would be more likely to benefit from advice regarding many other aspects of aging that they may not have otherwise obtained – including Medicaid and estate planning, education about possible exploitation, and review of pertinent resident admissions forms and contracts.
In proposing a consumer-driven approach, Joshua recognized critics' past reasons for opposing "negotiated risk" agreements, including the serious concern that facilities could mandate such "agreement" as an automatic wavier of all appropriate standards for care. That's not true choice. Attorney Eric Carlson, long-known for his advocacy for seniors, wrote an early article, Protecting Rights or Waiving Them? Why 'Negotiated Risk' Should be Removed from Assisted Living Law, Journal of Health Care Law & Policy (2007).
The specific risk that I'm thinking of these days is the risk that attends continued interaction with family members and friends for residents of assisted living or dementia care facilities. Coronavirus is just one of the risks that comes about through such interaction, and certainly the emerging details of facilities that fail to adopt or enforce sound infection control measures are, at best, disturbing even without this particular disease. Further, just because one resident is willing to "accept" risk coming from outside interactions, that doesn't mean the entire resident community would feel the same, and yet their own exposure to the risk increases with every fellow resident's outside contact. And staff members' safety is also impacted by third-party interactions.
Perhaps negotiation of the risk agreement provisions regarding community/family interactions should be made viable only where stronger safeguards can be developed against "casual" infection sources. We have standards for "green" architecture. Are there similar standards for "clean" architecture in senior living settings (and beyond)?
Saturday, May 16, 2020
I've written about Pennsylvania's ongoing dispute between its Department of Health and some County Coroners regarding responsibilities for reporting Covid-19 related deaths and how to better assure accuracy of data. It seems possible to me that part of the controversy in Pennsylvania may reflect the fact that the County Coroners are elected officials, and may not identify with the political views of the Governor. Some Republicans vs. Democrat. In contrast, disputes between Florida's 25 medical examiner district offices and the state's Department of Health are emerging news.
I don't follow politics in Florida closely enough to know whether party-politics are involved, but there does appear to be concern from the regional officials that the State is inclined to discount Covid-19 related deaths in Florida, perhaps in an attempt to protect tourism into the state. Should a "tourist" that dies in Florida be counted as a death in Florida? From Florida Today, this opening account of one tourist death:
When a 66-year-old man was found dying on an Amtrak train passing through Okeechobee County on April 5, there was nothing to indicate that he had COVID-19. It was the local medical examiner's office that pieced it together.
The examiner discovered the man had recently arrived with a fever at New Jersey's Newark Liberty International Airport from the United Kingdom. The Centers for Disease Control stopped him from boarding a flight to Florida and sent him to a local hospital for a coronavirus test. Released before the results came back, he got on a southbound train, went into cardiac arrest while traversing the Sunshine State, and was pronounced dead at a Florida hospital.
But since at least April 20, the Florida Department of Health has blocked the Medical Examiners Commission from releasing their own detailed spreadsheet of the COVID-19 dead. On Wednesday, the state released the medical examiners' spreadsheet but redacted the narratives and cause of death entries.
Friday, May 15, 2020
Another interesting conversation with a long-term care administrator this week was about "what kind of tests" are important in the Covid-19 context, especially for older adults in a congregate setting. A first question is whether every member of the staff and the residents should be tested regardless of the presence or absence of any symptoms. A Washington Post editorial on May 14, 2020 called for "extreme measures" Of course, the utility of such threshold testing mandates depends upon the availability of the means to test and how quickly the results of the tests will be processed. It is unlikely that the nation's number of residential care facilities will have the White House's "instant" testing equipment, right?
But when Covid-19 is present in any congregate care setting, the administrator explained a second test may be even more important. The test is for oxygen levels, taken with a monitoring device, sometimes referred to as an oximeter and often attached to a finger of the person in question. She explained to me that with Covid-19, the impairment of the lungs can occur with dramatic quickness and not necessarily with any complaints from the patient about shortness of breath. The director explained that donations of oxygen concentrators to her community meant they are able to respond to lowered oxygen levels within seconds -- rather than within life threatening minutes or hours -- to provide enhanced oxygen for the resident. Further, many at-risk people resident not in nursing homes, but in the many other variations of congregate senior care.
Have you tried to convince a person with a cognitive impairment or an anxiety disorder to wear a mask or agree to keep that oximeter attached to their hand? Will "extreme measures" include funding to support needed increases in care-staff ratios?
Thursday, May 14, 2020
"Hey, how about giving it a rest, Bro?" -- The Importance of Achieving Consensus in Family Care Giving
Earlier today I had a conversation with someone about family dynamics during the Covid-19 crisis in the context of caring for elderly family members. The caller is the one who holds Power of Attorney for her older family member and who has been doing a lot of tough stuff, including care decisions for more than an year, decisions such as whether assisted living was appropriate, whether the beloved (but annoying) cat can go to assisted living with the family member, whether the larger family will somehow find a way to pay for a single occupancy room when the resident's own finances aren't enough, and whether the family member's increasing dementia will require additional one-on-one support, also requiring additional money.
But the call wasn't about any of those complicated parts of third-party decision-making challenges. It was about "can I tell my brother to back off? He's driving me crazy. He's 600 miles away from here. On the one hand he says, its up to me to make the decisions; on the other hand, when he hears from [our loved one] about being unhappy, he tells me what I should have done. Why didn't he say that before I had to make a decision?"
And then, not ten minutes after that conversation, I talked with a friend who is a director at a long-term care facility. She told me about how a big blowup occurred, because an adult child of one of their residents "found out" about the parent's Covid-19 diagnosis because of Facebook. The adult child called the director, upset about not hearing this information directly. The director, staying calm, tried to explain that the decisions about timing of communication on this topic were made by the resident's spouse -- and suggested the child call the spouse for more details. That in turn resulted in the spouse calling the director, in tears, about what the child had said.
So, perhaps in any context of long-term care, we all need to recognize that caregiving decisions are complex, fact specific, often requiring quick action. If the person who is the center of the care, the one who is loved (right?), and about whom the family is worrying, has made his or her own decisions about who is the Power of Attorney or other agent, we just need to take a deep breath before we criticize.
Or as one person wrote to me, in still another caregiving context, he was lucky he was "not having to navigate this alone," because he, his brother and sister were working hard to use their respective backgrounds (medicine and law) to strive for family consensus when called upon to make tough decisions for their parents. But when consensus isn't possible -- and that will happen -- he knew that one or more of them might have to "give it a rest" with well-meaning, post-decision advice.
Wednesday, May 13, 2020
Could Residents in Nursing Homes, Assisted Living Facilities and Personal Care Homes be "Canaries in the Coal Mines?"
Coronavirus infection rates at nursing homes are hot news, and getting hotter each day. Some see this as evidence of substandard care. I had been holding hope, frankly, that when I read another horrific story about a specific nursing home with xxx cases, high death rates, or a staff decimated by infections, the explanation could be as simple as negligent care.
But, what if that isn't the reason? What if facilities are employing best available practices, but the "best available practices" just are not good enough in the context of congregate care settings for this complicated disease? Frankly, state of the art models for long-term care are ones with strong behavioral programs, where quality of daily life is as important as protection against risks. Interactions, engagement, exercise, activities are what make those programs "best available."
A few days ago a friend sent me a news story about an assisted living facility where approximately 50% of the residents have recently been diagnosed with Covid-19 infections -- and where a first Covid-19 related death has occurred. I was startled, because I recognized the name of the facility.
Less than four weeks ago, the testing at that facility had shown no patients or staff members to be positive for the coronavirus. Early in March, the pro-active managers instituted "no visiting" rules for family members and other outsiders, along with other strict precautions. The facility even made arrangements for nearby housing for staff members -- at no cost to the staff -- to make it easier for them to separate themselves from cross-infections in their own homes during the quarantine. The staff continued to involve residents in daily activities, recognizing that engagement was a critical part of care, especially without family and friends visiting.
I'd been hoping that the early reports of "no virus" were testament to the fact that best practices can be employed successfully to keep fragile elders or disabled adults safe without locking them in their rooms. But, that apparently proved not to work out at this very careful facility. I've heard critics say the solution is for elders to be "at home," But "keeping your loved one at home" often won't be a practical solution, especially if the needed care is complicated, often requiring more than "just" family.
Because this facility was where each of my parents lived during their last weeks, I saw first hand just how diligent and how careful that staff is about infection.
We are all gaining a stronger understanding of how complicated care is even without this particular, terrible new disease. The disease has also run rampant through many jails, prisons and commercial food plants, all additional examples of congregate settings. But if dedicated care communities with good ratios of professional staff and very good records on quality of care are struggling to prevent Covid-19 infection, what is the real message the canaries are singing?
Tuesday, May 12, 2020
Identifying the What, Where and Who for Documenting Key Information on Cause of Death during a Pandemic
As I reported last month, the Pennsylvania Department of Health and County Coroner offices are in a bit of a struggle over their roles and responsibilities to report causes of death, including COVID-19 related causes. The dispute continues and the issues include:
- How to report the "county location" of the deceased for a COVID-19 related-death? For example, if the individual became infected while living in Adams County, Pennsylvania, but the final treatment and death was at Penn State Hershey Medical Center in Dauphin County, should the "county of death" be Adams or Dauphin County?
- How to characterize the cause of death? For example, under Pennsylvania statutory law at 16 P.S. Section 1218-B (2018), County Coroners "shall investigate the facts and circumstances concerning a death that appears to have happened within [their] county, notwithstanding where the cause of the death may have occurred" to "determine the cause and manner of death." Should a "COVID-19 related death be described as "death by natural cause," a phrase often used on death certificates or more specifically as a "death known or suspected to be due to contagious disease and constituting a public hazard," a phrase referenced in the Coroner's law?
- Where a patient's attending medical professional certifies the cause of death and reports the cause directly to the State Registrar of Vital Statistics, should the state then be required to share that information with County Coroners? Attending medical professionals have legal authority to sign death certificates and to make reports directly to the State Registrar under Pennsylvania's Vital Statistics Law of 1953 at 35 P.S. Section 450.101 et seq. (amended in 2012). Without a clear path for sharing information, how will counties have timely information that can affect other county reporting obligations?
- Does the State have authority to mandate reporting by the County Coroners using criteria recommended by the federal Centers for Disease Control and Prevention (CDC)? In April 2020, the National Vital Statistics System, which operates under the CDC, issued guidance for reporting COVID-19 related deaths, offering three sample scenarios where the "immediate cause of death" would be described as some form of acute respiratory illness, while COVID-19 would be described as an "underlying cause" that initiated the events resulting in death.
- Who is responsible for resolving any inconsistencies in County and State statistics for deaths, including COVID-19 related deaths?
On a recent WITF-Radio's Smart Talk program in central Pennsylvania, coroners from York County and Cumberland County described their concerns about disparities between state and local statistics. Charley Hall reported that Cumberland County had 45 COVID-19 related deaths, while the State at the same time was reporting 37 deaths. In York County, the lower COVID-19 number was reported at the County level, while the State recorded a higher number. For more on the practical problems, listen to the Smart Talk Podcast for 5/11/2020. The coroners raised the potential for such discrepancies to trigger erosion of public trust.
In many Pennsylvania counties, as in other states, a significant majority of COVID-19 deaths are occurring in nursing homes or other long-term care residential settings. Some of the concerns about accuracy and transparency of reporting imply intentional under-reporting or misleading reports regarding deaths in nursing homes. Pennsylvania has one of the largest populations of citizens in the nation who reside in nursing homes. Long-term living is a major, multifaceted industry in Pennsylvania.
In addition, the number of diagnosed cases, the location of diagnosed cases, and the number of COVID-19 related deaths can make a difference in whether any particular county is allowed to move away from strict social-distancing related rules.
Monday, May 11, 2020
Syracuse Law Professor Nina Kohn (currently a visiting professor at Yale Law), has an important Op-Ed in the Washington Post, in which she tackles the not so subtle ageism that accompanies response to COVID-19 -- while making it clear that the issues are much deeper than a single disease. She writes:
Of course, older adults are at heightened risk, even though covid-19 strikes younger people, too. But across America — and beyond — we are losing our elders not only because they are especially susceptible. They’re also dying because of a more entrenched epidemic: the devaluation of older lives. Ageism is evident in how we talk about victims from different generations, in the shameful conditions in many nursing homes and even — explicitly — in the formulas some states and health-care systems have developed for determining which desperately ill people get care if there’s a shortage of medical resources.
For more, read The Pandemic Exposed a Painful Truth: American Doesn't Care About Hold People. The subtitle? "We speak of the elderly as expendable, then fail to protect them."
May 11, 2020 in Consumer Information, Current Affairs, Dementia/Alzheimer’s, Discrimination, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Health Care/Long Term Care, Statistics | Permalink | Comments (0)
Sunday, May 3, 2020
Recently a friend of mine, in her 90s, asked me if I had ever heard of a particular company, one well known for its direct mail campaigns. When she said that name, I recognized it as one that often focuses on magazine subscriptions with discounted prices, with a hefty dose of possible "prizes" on the side. I responded affirmatively and explained how I had tried to help a woman years ago who had become caught up in a cycle of purchases and "prizes" that left me with the firm opinion the real business of this company was preying upon people, tempting them with offers of "rewards" into spending more and more money on items of little to no value.
I thought that was the end of the matter.
Two weeks later, my friend asked again if I'd heard of that particular company. This time I responded, "why are you asking?" She explained she had filled out some kind of form or game card, to qualify for some kind of prize, and that she had bought a couple of items to have, in her words, a better chance to qualify for the prize. She explained the form was fun and a bit of a "good mental challenge" -- requiring her to match questions and answers from different columns and paste stickers into the correct slots. She mailed in the completed form. She was pleased when she received notification by mail that she had "won" a prize. She eagerly called what she thought was a "toll free number" to claim her prize (I'd be curious about what her phone bill eventually shows about that call).
When she made the call, a "nice woman" on the phone asked her to re-verify her identity and her award number, and her address and phone numbers, plus certain other personal details. The woman announced the good news, that my friend had actually won two prizes with her submission.
And then the true game began. The "nice woman" on the phone asked my friend for her credit card or banking information (my friend couldn't quite remember which) so that the company could make a "direct deposit" of her prize.
Fortunately, that is when my friend fully appreciated it was a scam. She hung up.
I worry, of course, that my friend's name and other information are now part of a new mailing list, that can be used again and again or sold by that company, as a possible "mark" for an even less principled predator.
We talked about why she had taken the chance. This woman has been a sophisticated business woman for most of her life, and no one would suggest to her that she has any sign of cognitive impairment, other than, perhaps, being a bit forgetful. But she had been living in isolation for weeks, unable to be with other members of her extended family in real time because of health issues in the family, and she wanted something "to do." She initially felt a bit of pride in being able to figure out what she thought was the trick to the game, resulting in her "win."
I wonder how often this scenario -- or a more modern computerized or cellphone variation -- is playing out during the pandemic.
Thursday, April 30, 2020
The AALS Section on Law and Aging is joining forces with the Sections on Civil Rights, Disability Law, Family and Juvenile Law, Minority Groups. Poverty, Sexual Orientation, Gender-Identity Issues, Trusts & Estates and Women in Legal Education to host a program for the 2021 Annual Meeting, scheduled to take place in San Francisco in January. The theme for the program is appropriately broad -- "Intersectionality, Aging and the Law."
I like this definition of "intersectionality":
The interconnected nature of social categorizations such as race, class, and gender as they apply to a given individual or group, regarded as creating overlapping and interdependent systems of discrimination or disadvantage. Example: "Through an awareness of intersectionality, we can better acknowledge and ground the differences among us."
We need great presenters!
We are interested in participants who will address this subject from numerous perspectives. Potential topics include gray divorce, incarceration, elder abuse (physical or financial), disparities in wealth, health, housing, and planning based on race or gender or gender identity, age and disability discrimination, and other topics. The conception of the program is broad, and we are exploring publication options.
If you are interested in participating, please send a 400-600 word description of what you'd like to discuss. Submissions should be sent to Professor Naomi Cahn, firstname.lastname@example.org, by June 2, 2020, and the author[s] of the selected paper(s) will be notified by July 1, 2020.
AALS is planning on hosting the annual meeting from January 5-9 and I personally feel the overall theme for the conference is apt in these fraught times: The Power of Words
April 30, 2020 in Advance Directives/End-of-Life, Cognitive Impairment, Consumer Information, Current Affairs, Discrimination, Elder Abuse/Guardianship/Conservatorship, Estates and Trusts, Ethical Issues, Grant Deadlines/Awards, Health Care/Long Term Care, Housing, International, Legal Practice/Practice Management, Programs/CLEs, Property Management, Science, Statistics, Webinars, Weblogs | Permalink | Comments (0)
Sunday, April 26, 2020
Last week, I listened to an interview of a County Coroner in Pennsylvania. The focus of the radio program was whether statistical accuracy for any State's determination of cause of death is important, especially during the COVID-19 pandemic.
The coroner said "yes" to the softball, threshold question but then the interview took a surprising turn. The host next asked, "How do you characterize cause of death for possible COVID-19 related deaths?" In Pennsylvania, there has been a bit of controversy on this topic, as detailed recently by the Philadelphia Inquirer. For example, if the affected person, especially an older adult, had multiple co-morbid conditions, such as serious heart disease and diabetes, is the new infection with COVID-19 (a contagious disease and public health hazad) the "official" cause of death as recognized by Pennsylvania law at 16 P.S. Section 1218-B (as revised and effective on December 24, 2018)?
The particular County Coroner, however, took his answer down a whole different path, predicting that COVID-19 deaths may end up being characterized as "homicides," if or when the disease is proven to be manipulated or caused by a laboratory in China. Whoa!
That track of analysis clearly startled the host, who tried to refocus the speaker's attention on the potential complicating factors that determine how death is related in whole or in part to the coronavirus disease. But the coroner wasn't willing to walk back his speculation, and started talking about the need for openness to the possibility of foreign, criminal intention.
The interview was an abrupt reminder that documenting any cause of death can be complicated. This can be especially true when the official in charge of the decision is an elected official. Elected officials, whether at the state or county level, may be subject to political views or pressures. Further, Pennsylvania and a surprising number of other states permit but do not require elected or appointed coroners to have a medical or pathology degree as a qualification for the job. In Pennsylvania, coroners for Class 2 and smaller counties -- the vast majority of its 67 counties -- are "elected." In 2018, the state law was amended to require newly elected county coroners to take a 32 hour course of instruction relevant to crime-scene investigation, toxicology, forensic autopsies and the legal duties of a coroner. Officials elected prior to the December 2018 effective date of that modernized law, however, are grandfathered into the credentials and are not required to take or pass any threshold test.
It seems that even without the one coroner's flirtation with conspiracy theories about the origination of the COVID-19 virus, Pennsylvania state officials were already trying to harmonize state and local policies about reporting COVID-19 as an official cause of death. During the Spring of 2020, Pennsylvania's Department of Health issued "Guidance" for Coroners and Medical Examiners regarding reporting COVID-19 related deaths, and the policy appears to emphasize that most certifications reporting cause of death are to be made by "a medical professional who attended the deceased during the last illness." According to the Guidance, it is only when there is a "referral" to the County Coroner or Medical Examiner that the county official would have a role in making a death report under the state's Vital Statistics Law.
Friday, April 24, 2020
Transparency Issues in Long-Term Care: The Potential for Misuse of Confidentiality Policies to Hide Infection Facts from the Public
Recently I was talking with a friend in another state who is the director of an assisted living facility that largely serves older adults who have significant risks factors. I asked, "Have you had any residents or staff members that have tested positive for COVID-19?" I asked her directly, because there was no way to know the answer to that question from public websites, either in her state or on a national basis. The good news was that her facility had had no such diagnoses, either among staff or residents. I also asked what she felt was key to avoiding infections, and we talked about the rates uncovered in other facilities in her own state. She said bluntly, "We learned from our experience with influenza the last two years that we had to make real changes, and we did so before the COVID-19 was a reality and doubled down when we started hearing about the coronavirus."
Internal infections have long-been a documented problem in residential care settings, and certainly not limited to so-called "nursing homes." Contributing factors include residents who may have physical or mental conditions that make self-protection difficult and perhaps impossible. My sister and I used to struggle mightily with a family member whose dementia interfered with the simple task of hand-washing -- even though this same person was the one who taught us the importance of soap and water from the time we were small children. It is perhaps ironic to recall that as a horse-mad girl I had tried to persuade both of my parents that there should be an exception for "barn dirt," on my theory that horse-related dirt was "clean dirt." My mothers still insisted I undress on the back porch and wash thoroughly before coming in for dinner. Wise woman, one who was quick to dismiss utter nonsense.
Fast forward decades and every day I hear new arguments regarding why facilities that have experienced life-threatening infections should not be required to report this in a public venue. The most problematic argument is one that says an individual's infection is confidential medical information that prevents the facility from reporting statistical information, and thus an infection cannot be made public. I've seen arguments about federal or state record-keeping policies such as HIPPA privacy rules or Pennsylvania's confidentiality rules as the rationalization. I think I know what my mother would call this kind of argument.
Syracuse Law Professor Nina Kohn tackles the history of mishandled safeguards against infections in long-term care with an Op-Ed for The Hill. In "Addressing the Crisis in Long-Term Care Facilities," Professor Kohn points to specific actions at the federal level that have weakened, rather than strengthened, potential safeguards. She makes five specific recommendations, including prohibitions on staff working in more than one-long-term care facility, to reduce cross-contamination, and the need for family members and others to make it clear that we "are paying attention to what is happening." She reminds us: "Those who are health care agents for nursing home residents should not be afraid to request access to medical records, as federal law entitles them to do, if facilities are not forthcoming with information about the care being provided."
April 24, 2020 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, Health Care/Long Term Care, Housing, Medicaid, Medicare, State Statutes/Regulations, Statistics | Permalink | Comments (0)
Monday, April 20, 2020
Our friend Professor Naomi Cahn at George Washington Law has advised us that the peer-reviewed Journal of Elder Policy is planning a special issue related to COVID-19. Certainly the implications of policy in this pandemic are constantly in the news, and how appropriate to begin the process of analysis.
Abstracts of 500 words are due by June 15, 2020. Full papers of between 8,000 and 10,000 words are due by September 30, 2020.
Topics may include but are not limited to:
- Risk assessment, Ageism, Legislation to protect older adults,
- Community initiatives, Medical and nursing perspectives,
- Mental health challenges for elders, Family support or conflict,
- Helping and volunteering, Rationing of care, Challenges for caregivers
Authors should send their Vita and a 500 word abstract related to their paper by June 15 to Managing Assistant Editor, Kaitlyn Langendoerfer. Details available here.
The ever-busy Naomi is a member of the Editorial Board for the Journal. Thank you for letting us know about this opportunity, Naomi!
April 20, 2020 in Advance Directives/End-of-Life, Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Grant Deadlines/Awards, Health Care/Long Term Care, Programs/CLEs, Science, Statistics | Permalink | Comments (0)
Friday, April 17, 2020
My students at Dickinson Law often suggest important law and aging issues to explore and certainly the COVID-19 crisis is a daily source of topics. High on the list in my students' minds have been the tragic stories connected to diagnosis and prognosis of the disease in "nursing homes." Sometimes it is hard to even keep up with the stories. Consider these headlines from the last few weeks:
- NYT on March 21, 2020: The Coronavirus's Rampage Through a Suburban Nursing Home (in Washington State)
- NBC News on April 1, 2020: Nursing Homes Overwhelmed by Coronavirus: 'It Is Impossible for Us to Stop the Spread" (focusing mostly on New York State)
- NYT on April 3, 2020: Coronavirus Sweeps Through a San Antonio Nursing Home (focusing on several facilities in Texas)
- Time on April 16, 2020: 18 Bodies Found Crammed Into Makeshift Morgue After Coronavirus Deaths Overwhelm New Jersey Nursing Home
When my sister and I first realized that the novel coronavirus was likely to have a devastating impact on anyone with a compromised immune system, we quietly and sadly acknowledged our minor relief that our parents, who had both experienced dementia in the final months before their deaths, were spared at least this particular situation. My sister went further and said, "If this had happened while Mom or Dad were still alive, I would have quit my job to apply for a job in their living center. I wouldn't have been able to live with being forced to stay away, in essence abandoning them."
Anyone who knows my sister would know that would have been her heartfelt plan. But it was also a reminder of something we knew so well from our experiences. Even the very best of care settings -- whether in the individual's home, in assisted living, in supported independent living (such as in a CCRC), or in a skilled nursing facility -- need a loved-one's involvement. On the one hand, the cared-for individual "lights up" when they see a family member arrive, even if the visit is just for a few minutes and even if the older person cannot quite remember the identity of the visitor. No activity-based care program can entirely reproduce that positive impact.
But even the best facility also benefits from having the eyes and ears of family members to observe and make appropriate reports about concerns. On my last sabbatical, I stayed in Arizona to be near both of my parents, in their 90s. Mom was still in the family home and Dad was in a truly caring, small, personal and well-staffed dementia care center. One day I arrived to find my father deeply upset. He said "I can't find my room." I was worried that this meant his cognition had taken another turn for the worse. But, when I offered to walk him from his favorite outdoor bench to his room, it turned out he was right. Everything that was once his -- his favorite chair, his clothes, his photographs -- were gone from his room. I found out they were on their way to a different cottage. More distressing, it was a cottage for individuals who no longer left their rooms -- and that wasn't my father's profile at all. Suffice it to say, that "move" was reversed.
That's a small example. But when a pandemic means that family members cannot visit at all -- the opportunities for confusion and short cuts can increase in any care setting. I don't know what the solution is; but I do know that the need for transparency in care, and for family members to feel welcome every day in every care setting, are important to quality of care. And, of course, to quality of life for everyone.
I'm hopeful that the COVID-19 pandemic will stimulate creativity and identify new ways of safely maintaining relationships for frail elders or others with delicate health profiles, while also still taking appropriate precautions to reduce the potential for high rates of cross-contamination and infection, including infections that cross the borders of the setting. On my father's last full day, before a nighttime stroke left him in a coma, he and I had lunch together, we walked in the sunshine, and he had his favorite ice cream for a snack. How I would hate to think of others missing such opportunities.