Elder Law Prof Blog

Hugs in Time for Christmas

A couple of days ago, the Washington Post ran an uplifting article about a hug room in a SNF.  After months of isolation, a ‘hug room’ lets Italian nursing home residents touch family for the first time tells us about "a 7-foot-tall piece of plexiglass, molded into a three-sided booth. It had four cutout holes, where protective sleeves would be added for arms. It was known, in the strange language of the pandemic, as a “hug room,” but it was less a room than a barrier: residents on one side, relatives on the other."  Although not as ideal as living in a COVID free world (or at least a vaccinated one), this "plexiglass represented the sort of modest step some nursing homes are now taking in a year when they have faced excruciating decisions about how protective to be and how best to reduce their risks."  The article references similar efforts taken by other SNFs.

A  little bit of good news, then, for Christmas.

PS: Florida announced that the second round of vaccines will go to those 70 and older, and Texas, to those 65+ and older.

PPS-remember to thank first responders, health care professionals and all who keep us safe and going through this trying time. Stay safe and stay healthy.

 

Weakened Memory Recall: Leading to Remembering?

Scientific American ran an article, Helping Alzheimer’s Patients Bring Back Memories Targeting recall processes could let people who are in the disease’s early stages access what they currently can’t remember.

People of all ages have moments when it feels like we’re on the edge of recalling something but can’t quite do it—where we parked our car or left our phone, for example, or what name goes with that familiar face. It’s extremely frustrating in the moment, but for most of us, we can usually remember if we try. For patients with Alzheimer’s, Huntington’s and many other dementia-causing diseases, however, memory loss is much more profound.

The article discusses two theories regarding memory loss: “one is that these patients can’t store new information properly in the brain; the other is that their ability to recall stored information has been weakened.”   The author discusses his research and how that led him to support the “weakened memory recall idea.”

The author uses great analogies to help the reader understand the science of the disease and the work. The author notes that there is a lot yet to know, “but what’s clear is that we need to take advantage of targeting recall to help treat patients in the near future.” 

Thanks to my colleague and friend, Professor Feeley, for sending me this article.

Forgetting a Word Doesn't Mean Dementia

Ever find yourself saying, "what was their name again? It's on the tip of my tongue."  Then do you worry that you have dementia because you can't remember the word? The Washington Post tackled this in a recent article,  Dementia is more than occasionally forgetting a name or a word.

First, it is important to know that dementia cannot be diagnosed from afar or by someone who is not a doctor. A person needs a detailed doctor’s exam for a diagnosis. Sometimes, brain imaging is required.

And, forgetting an occasional word — or even where you put your keys — does not mean a person has dementia. There are different types of memory loss and they can have different causes, such as other medical conditions, falls or even medication, including herbals, supplements and anything over-the-counter.

There is normal age-related memory loss, and the article emphasizes that such memory loss is normal! Let’s distinguish from memory loss that is not normal---“forgetting the name of someone you see every day; forgetting how to get to a place you visit frequently; or having problems with your activities of daily living, like eating, dressing and hygiene….When you have troubles with memory — but they don’t interfere with your daily activities — this is called mild cognitive impairment. Your primary care doctor can diagnose it. But sometimes it gets worse, so your doctor should follow you closely if you have mild cognitive impairment.”

The article offers the CDC's  quick bullet-point list of warning signs for specific domains when forgetfulness is more than just normal age-related memory loss:

• Memory.
• Attention.
• Communication.
• Reasoning, judgment and problem solving.
• Visual perception beyond typical age-related changes in vision.

Although Alzheimer’s is the dementia that most often comes to mind, the article reminds us that there are several types of dementia.  The article provides a good overview of the issues that arise from dementia and concludes with this thought-provoking observation:

But even more frightening is unrecognized or unacknowledged dementia. You must, openly and honestly, discuss changes you notice in your memory or thinking with your doctor. It’s the first step toward figuring out what is happening and making sure your health is the best it can be.

And, as with any disease or disease group, dementia is not a “character flaw,” and the term should not be used to criticize a person. Dementia is a serious medical diagnosis — ask those who have it, the loved ones who care for them or any of us who treat them.

COVID and SNFs: Deaths Preventable?

The New York Times asked the hard question, whether COVID deaths in SNFs were preventable, in a recently published opinion from the editorial board. How Many of These 68,000 Deaths Could Have Been Avoided?

Around 40 percent of all coronavirus-related deaths in the United States have been among the staff and residents of nursing homes and other long-term care facilities — totaling some 68,000 people.

Those deaths were not inevitable. The novel coronavirus is adept at spreading in congregant living facilities, and older people face an increased risk of contracting and dying from it. But most of the nation’s nursing homes had months of warning about the coming threat: One of the first coronavirus outbreaks in the country was in a nursing home near Seattle, making it clear that such facilities ought to prepare.

The opinion discusses steps SNFs could have taken to reduce the chances of spread, the financial model for SNFs in the US. The opinion also discusses the reduction of oversight and notes

Every effort should be made to ensure that the bulk of the money that the government puts into this industry goes to patient care, not providers’ pockets. An investigation started by the House of Representatives into the nation’s largest for-profit homes is a meaningful step in this direction. The Justice Department should follow suit.

The opinion discusses the way SNFs get supplies for their PPEs, etc. as well as staffing shortages. The editors conclude with 3 recommendations

In the near term, lawmakers should provide for hazard pay for nursing home workers in the next relief package and should require all nursing homes to enact non-punitive sick-leave policies so that workers don’t infect colleagues or residents.

In the longer term, federal officials need to consider revising Medicaid reimbursement rates for long-term care so they support higher than minimum-wage salaries, and shifting reimbursement policies so at least some long-term care can be reimbursed with Medicare dollars.

Lawmakers and nursing home operators also would do well to consider a national initiative, perhaps involving student volunteers and internship programs, to recruit future workers to nursing home care. That work, which can be deeply rewarding, will remain urgently needed long after this crisis passes.

Legal Issues in Using AI for Caregiving

Computer Weekly recently addressed the legal issues that may occur when using technology for caregiving AI may be a solution to the social care crisis, but what are the legal concerns?,  looks at the caregiving situation in the U.K.  Building on the story from yesterday about the robot "Pepper" who can carry on conversations, the article highlights some legal issues, such as an individual's privacy. 

Consider this-the robot could report concerns about abuse, for example, "the technology might provide a report, supported by video evidence, to family members or those with the legal responsibility of care, such as attorneys or deputies, who can then review such material. It can easily become part of a care home contract to consent to such filming, although it is vital that this is handled in a sensitive manner and regularly deleted to ensure that a resident’s privacy is protected." The article notes concerns about "sensitive personal data." Would residents provide consent? Who would consent if a resident lacks capacity. As the article concludes, "[W]e must never forget who is at the heart of these considerations, and the legal framework needs to catch up with the technology to protect them and for it to have a viable chance of success."

Thanks to Professor Feeley for sending me this article.

Lonely? Robot Companions May Help

The Guardian recently published an article about the use of robots in long term care facilities to combat loneliness of residents. Robots to be used in UK care homes to help reduce loneliness describes the roll these robots can play in interacting with residents.  These are not your "normal" robots, but then I don't know what one would consider a "normal" robot. These robots, on wheels, "called “Pepper”, move independently and gesture with robotic arms and hands and are designed to be “culturally competent”, which means that after some initial programming they learn about the interests and backgrounds of care home residents. This allows them to initiate rudimentary conversations, play residents’ favourite music, teach them languages, and offer practical help including medicine reminders."  The researchers not that these robots do not replace human caregivers but instead supplement them.  The robots were tested in the U.K. and Japan and researchers found that those residents who spent time with the robots for "18 hours across two weeks had a significant improvement in their mental health. There was a small but positive impact on loneliness severity among users and the system did not increase feelings of loneliness...." 

Robots, whether "Pepper" or others, do have limitations--for example, they aren't human.  The article reports some of the limitations mentioned, such as their chats with residents were lacking some depth, were impersonal and lacked cultural awareness. Their movements were, shall we say, robotic. But imagine, a robot that can hold a conversation with you.  This can be a great tool, to supplement human caregivers!

Thanks to Professor Feeley for sending me the article.

What Does It Mean to Do Contact Tracing for Communicable Diseases, Especially for Air Travelers?

Last month I made my first roundtrip, domestic airline flight following 90+ days of lockdown and gradual easing of travel restrictions.  I scheduled this quick trip cautiously, for family-related reasons, and with a goal of returning to my Pennsylvania home well in advance of any return to work with students in my law school. I'm not a timid flyer, but I did my best to try to minimize risk factors, including selection of an airline that advertised "vacant" middle seats, masking requirements, and updated standards for cleaning the airplane and social distancing. I am writing here because an individual on the return leg of my flight in my same row (but across the aisle) became seriously ill during the flight. This post is about my growing concern about what it means to respond to the potential for a communicable illness while traveling, especially but not exclusively in the time of COVID-19. 

When the individual became ill (seeming to lose consciousness and vomiting-- more ill than what I associate with "mere" air sickness), the flight attendants responded to his needs with plastic bags and napkins.  On the positive side, they kept everything low key and talked to the individual softly.  I think it was another, closer passenger who summoned them and everyone tried to respect the privacy of the individual.  Eventually, the ill passenger was moved to the rear of the plane.  Shortly after that, all passengers were informed the seatbelt signs had been activated and everyone should stay in their seats for the remainder of the flight.   There were no further announcements and nothing said about the ill passenger specifically. When the flight arrived at its regular destination, I did not see the individual leave the plane.

What does it mean for any state health department or CDC program official to say they will follow a plan for contact tracing?  Each step of the process needs clarity, including that first step of identifying the ill traveler and other potentially affected travelers, right?   

I received a traditional customer satisfaction "survey" form from the airline the morning of my return via email, asking me to describe the flight. This made me realize that I should be talking directly to the airline about this specific incident.  Was the individual in question experiencing a communicable illness, especially COVID-19?  I made a short, emailed report to the airline less than 12 hours after the end of the flight, and made a follow up inquiry and a second report by telephone and email.   The most I have learned is that the airline is "researching" whether there is any record of the incident or illness on board that flight.  Taking a week (or more?) to determine whether the crew made a report is not reassuring. At a minimum, shouldn't there be a record of that plane being taken out of service for some period of time for cleaning?  

The Pennsylvania governor, for reasons unrelated to my account above, has recently asked all residents returning from the departure state in question (and certain other states experiencing surges in COVID-19) to self-quarantine for 14 days. That makes sense.  Even though I had been exceptionally careful during my time out-of-state, the airline incident was a stark reminder that travel, even with the lessons learned during the last several months, involves factors that are completly outside the control of any of the passengers.  "Being careful" on an individual basis may not be enough and when something happens that involves risk to others, we need clear lines  for any investigation and communication.    

Everyday we are learning new things about how to deal with communicable illnesses, including ones that may be life-threatening. I think what I'm realizing is that as individuals and consumers, we cannot be passive about these steps.

I contacted the CDC and was told there is a process for "contact investigations" by the CDC, but that triggering such an investigation cannot be done easily, at least not if you are a mere passenger.  They recommended I contact the health department in the state where my plane landed.  Here is what CDC sent me by email:  https://www.cdc.gov/quarantine/contact-investigation.html

Weaknesses clearly exist in the protocols. The airline and CDC have been quick to warn me that they cannot give any information about the "patient."  I'm not asking to know the patient's identity in any way. But shouldn't any potentially affected traveler be entitled to know:

a. Whether there was a report of the illness made by the crew to the airline and/or other authorities.

b. The result of any investigation, especially in terms of public health implications.

c.  Whether a specific, communicable illness or disease was identified.

d.  Whether there are specific steps that should be taken by passengers in light of the history.

Shouldn't the CDC want to know whether others on that plane have experienced similar symptoms? (Thankfully, I have not, but although I was in the line of sight of his seat, there were others between us, and in front and behind him, who were much closer.)  I have realized that short of contacting every passenger on the plane, it might be difficult  for some airlines to help with "contact" tracing. They may be relying on a manifest rather than a chart for assigned seats.  Certainly, no one asked me or other, closer passengers on the flight for contact information. I hope the ill individual has recovered fully and quickly, and that for his sake this was a temporary illness.  I'm being calm, even as I'm frustrated.  I'm frustrated not just for myself, but for the larger public.  The  passengers on this plane included all ages, including older individuals.  Earlier during my trip, I overheard one older traveler say to another, "I just want to live long enough to see my grandchildren again."

Must Any Public "Right to Know" the Covid-19 Infection Status of LTC Facilities Depend on Legislation?

Under the best of circumstances, it is difficult to make a decision about whether to place a fragile loved one in a care community.  With COVID-19, such a decision can be even more difficult,  as some states states (and some facilities) have resisted making public the names of long-term care facilities where residents or staff have been diagnosed with COVID-19.

In Arizona, a "right to inspect public records" suit was filed on May 5, 2020 by news organizations, seeking to review "public records" that show the number of COVID-19 positive residents at nursing care institutions, as well as the number of transfers made between such facilities and Arizona hospitals.  They were not requesting the identity of the residents; however, disclosing records containing the numbers would disclose the names of the facilities. That state's Governor has reportedly taken the position that not disclosing the COVID-19 infection history of facilities by name is "in the best interest of public health." 

On May 29, Maricopa County Superior Court Judge Christopher Coury ruled against the news organizations.  In the 23-page opinion in CV 2020-005385, Judge Coury concluded with these interesting paragraphs: 

72. Both Plaintiffs and Defendants have asserted legitimate positions in this action, particularly given that the underlying issues are important and weighty in the lives of Arizonans. It is beyond dispute that Arizonans who have parents, aunts, uncles, friends, neighbors, and loved ones living, or who may in the future be placed, in a Facility to care for them want, and justifiably deserve, to know how that Facility and its residents have fared during the Covid-19 public health emergency. As a son, nephew, friend, and neighbor, this judicial officer understands, respects, and empathizes with the need for Arizonans to have access to the information contained in the Records. Fortunately, this need of family and caregivers has been mitigated, if not eliminated, by EXECUTIVE ORDER 2020-35, which requires Facilities to provide Covid-19 information to residents, transferees, and applicants – and their guardians and next of kin – on a prompt basis.

 

73. It is not the position of the Judicial Branch to enact legislation or to create policy – that responsibility rests squarely with the other branches of government. The Legislature could consider the policy implications on all sides of this issue, and if desired, enact clarifying legislation and expressly protect records, or direct that records be released. If any frustration exists, it is that this has not happened. The Act – the legislation authorizing the actions at issue – lacks clarity. Rather than using model legislation with clearly defined terms, and rather than actually defining the terms used, the Legislature in 2002 created Arizona-specific legislation, apparently from whole cloth. Even though the subject matter of the Act relates to emergencies – instances when clear statutes are needed to permit critical, decisive and time-sensitive actions – the Act left critical terms undefined. Eighteen regular legislative sessions have passed, and the Act has not been amended or clarified. Perhaps this is the fortuitous result of not having to deal with a widespread health emergency during the intervening years. Nonetheless, if this decision illustrates nothing else, it highlights the need for the Legislature to revisit the Act and make it more workable for all concerned. In its present form, the ambiguous Act does a disservice to the media, to government leaders, to the courts, and to all Arizonans.

 

74. Arizona has been profoundly impacted by Covid-19. Lives have been lost. Women and men, old and young, have been sickened. The economy has been set back. Livelihoods of people have been compromised. Weddings and religious ceremonies have been delayed. Births and funerals have been isolated. Students have missed classes and graduations. Temptation exists to simply adopt jurisprudence that because Covid-19 has created such harm in our state and because Arizonans need information to battle Covid-19, sufficient justification exists to “look the other way” and require release of the Records. This judicial officer, however, will not and cannot do this. Indeed, were this judicial officer to ignore the law, Arizona’s Constitution – and its provisions of limited government and separation of powers – would be added to the list of Covid-19’s victims. The Court will neither countenance nor assist in this. Although difficult in the face of this devilish virus, fidelity to the Constitution and laws of the State of Arizona must prevail.

Therefore, Judge Coury entered judgment against the News Organizations as plaintiffs with respect to their request to produce records containing numerical information on COVID-19 infections at specific facilities, ruling that this was medical information that was "confidential and protected as a matter of law."  

The court found that a triable issue exists relating to other issues in the case, "specifically, Defendant's failure to produce  documents relating to information regarding the availability of PPE."  

Note:  I have not yet found a public website containing Judge Coury's decision, although it appears the order is not a restricted document.  If any of our readers come across such a site, feel free to let me know and I can amend this post to link to the full opinion.  

My thanks to Jon Dessaules, a  former Dickinson Law student, now a long-established Phoenix attorney, for assistance in tracking down information on this case.  

National Continuing Care Residents Association Joins Other Senior Living Advocates in Opposing COVID-19 Immunity

On June 1, 2020, the National Continuing Care Residents Association (NaCCRA) released its public statement detailing the organization's opposition to COVID-19 immunity or waivers of liability for nursing homes, adding to the growing chorus of opposition. They explain:  

CCRCs mainly provide three levels of care under one roof or on the same campus, normally comprised of independent living, assisted living, and skilled nursing care -- the latter two considered licensed long-term care facilities.  Our members can reside at various times in any of the three levels of care.  Fore example, one spouse can live independently while the other can live in assisted living or skilled nursing.  There are numerous variations of these living arrangements depending on the level of care required.

 

NaCCRA and its members are very sympathetic to the CCRC managers and front-line care/service workers as they labor during the coronavirus pandemic with its many challenges.  However, residents living and dying, many times alone, in nursing homes or assisted living apartments, should not be deprived of their legal rights or protections even in these most extraordinary times.

 

NaCCRA and its member residents living in continuing care settings are alarmed at the push to grant liability immunity to providers and operators of long-term care facilities in the face of the COVID019 epidemic.  Many states have acquiesced to provider association lobbyists at the expense of residents' legal protections.  NaCCRA believes that long term care providers must not be given a pass on negligence in any form simply due to a pandemic, which makes seniors in such congregate settings even more vulnerable.  

 

Therefore, we strongly oppose the liability waivers for COVID-19 legislated by some states.  WE urge that these be repealed and advocate on immediate moratorium on any future waivers for providers/operators of CCRCs and long-term care facilities.  It is our position that existing laws and negligence standards are more than adequate to protect long term care facilities that are sued if they have followed the proper standards of care and protocols.

My thanks to Jim Haynes, the current president of NaCCRA, for keeping us advised on their position.  

Is This the Time for Renewed Consideration of "Negotiated Risk Agreements" in Care Settings?

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)?  

Dispute over Statistics in Florida regarding Covid-19 Related Deaths

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.

 

The district medical examiner collected the facts, swabbed the body, confirmed coronavirus and entered the man's death into the Medical Examiners Commission record as a COVID-19 fatality on April 13. . . . 

 

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. 

 

For more, read "What's In the Censored Florida Medical Examiners Database of COVID-19 Deaths?" by reporters Alessandro Marazzi Sassoon and Jim Waymer.  

AALS Call for Papers/Presenters on Intersectionality, Aging and the Law

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!  

From Naomi Cahn at George Washington Law:

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, [email protected], 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

 

Getting Real about Cause of Death

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.  

Journal of Elder Policy Calls for Papers related to COVID-19, Policy and Older Adults

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!

Social Isolation and Loneliness in Older Adults Opportunities for the Health Care System

The National Academies of Science, Engineering and Medicine has issued a new report,  Social Isolation and Loneliness in Older Adults Opportunities for the Health Care System.

Here's the description

Social isolation and loneliness are serious yet underappreciated public health risks that affect a significant portion of the older adult population. Approximately one-quarter of community-dwelling Americans aged 65 and older are considered to be socially isolated, and a significant proportion of adults in the United States report feeling lonely. People who are 50 years of age or older are more likely to experience many of the risk factors that can cause or exacerbate social isolation or loneliness, such as living alone, the loss of family or friends, chronic illness, and sensory impairments. Over a life course, social isolation and loneliness may be episodic or chronic, depending upon an individual’s circumstances and perceptions.

A substantial body of evidence demonstrates that social isolation presents a major risk for premature mortality, comparable to other risk factors such as high blood pressure, smoking, or obesity. As older adults are particularly high-volume and high-frequency users of the health care system, there is an opportunity for health care professionals to identify, prevent, and mitigate the adverse health impacts of social isolation and loneliness in older adults.

Social Isolation and Loneliness in Older Adults summarizes the evidence base and explores how social isolation and loneliness affect health and quality of life in adults aged 50 and older, particularly among low income, underserved, and vulnerable populations. This report makes recommendations specifically for clinical settings of health care to identify those who suffer the resultant negative health impacts of social isolation and loneliness and target interventions to improve their social conditions. Social Isolation and Loneliness in Older Adults considers clinical tools and methodologies, better education and training for the health care workforce, and dissemination and implementation that will be important for translating research into practice, especially as the evidence base for effective interventions continues to flourish.

You can download a pdf of the book for free, or order a hard cc here.

Aging in This Decade Starting in 2020

Kaiser Health News  published an interesting piece a few days ago, What The 2020s Have In Store For Aging Boomers  opens with some interesting data. "Within 10 years, all of the nation’s 74 million baby boomers will be 65 or older. The most senior among them will be on the cusp of 85. ... Even sooner, by 2025, the number of seniors (65 million) is expected to surpass that of children age 13 and under (58 million) for the first time, according to Census Bureau projections." The author interviewed a number of experts to get a sense of what this decade will look like for the boomers and the trends they will face.

1. Care Crisis:  "Never have so many people lived so long, entering the furthest reaches of old age and becoming at risk of illness, frailty, disability, cognitive decline and the need for personal assistance."
2. Living longer and "better, " with a focus on quality of life.
3. "Altering social infrastructure" such as more easily accessible transportation, increased affordable housing,  making existing housing more appropriate for aging in place, and inter-generational programs.
4. Flipping the perceptions of aging from negative to positive.
5. "Advancing science", that is “advances in genetic research and big data analytics will enable more personalized — and effective — prescriptions” for both prevention and medical treatments ...."
6. Responding to inequalities in aging.
7. Longer careers in the work force

A new decade with ongoing challenges and a chance for progress!

Blood Test for Alzheimer's?

Professor Naomi Cahn, the incoming chair of the AALS section on Aging & Law, sent me this recent article,  The Hunt for a Blood Test for Alzheimer’s Disease wherein "[r]esearchers hope circulating biomarkers will enable earlier detection and better monitoring of the neurodegenerative disorder—and perhaps help usher in new treatments." The article identifies updates in research and summarizes some blood tests being tried to help with diagnosis.

A number of questions and issues remain to be resolved before many of the biomarkers found in the blood are ready for use in trials, much less for clinical care... [with] [o]ne issue that researchers must account for is individual variability....  “People are so different [and] there’s a lot of things we still don’t know how to even control for in terms of statistical analyses.” Age and APOE4 carrier status, for example, can change the levels of some AD biomarkers independently of whether an individual has the disease.

The story also notes the existence of technical challenges and challenges of consistency. So far scientists haven't found the definitive diagnosis, nor the cure, but they are surely working hard to do so.

 

Updates from Missouri

I was in Missouri last week for a couple of days and had a chance to visit with some great people. First, I had the privilege to meet Dr. Erin Robinson and Dr. Clark Peters from the School of Social Work at Mizzou.   The work they are doing in gerontological social work is quite interesting. At some point our conversation segued into the role of technology in caregiving for older adults, and Dr. Robinson shared with me the research and activities of the Mizzou Center for Eldercare & Rehabilitation Technology, whose "mission is to create technology for proactive healthcare that helps older adults and people of all ages and needs to lead healthier, more independent lives."   We also talked about the University's foray into housing for elders, known as TigerPlace. which is a partnership between Americare and the Mizzou Sinclair School of Nursing.

On Friday, I attended day two of the winter symposium of the Missouri Chapter of NAELA (MoNAELA), The two day program had a robust agenda of general sessions and two tracks, advanced and basics. These folks are a great bunch of people who are quite knowledgeable and caring.

 

 

Two Recent Articles About Dementia

Two articles in the news are worth mentioning, in case you missed them. First, the New York Times ran an article, Why Didn't She Get Alzheimer's? The Answer Could Hold a Key to Fighting the Disease. "Researchers have found a woman with a rare genetic mutation that has protected her from dementia even though her brain has developed major neurological features of the disease."  The article highlights a recently published study "in the journal Nature Medicine, [in which] researchers say the woman, whose name they withheld to protect her privacy, has another mutation that has protected her from dementia even though her brain has developed a major neurological feature of Alzheimer’s disease."  The article reminds us to not expect instant therapies-this is going to take time, but even so, it's still very positive news. "[T]his case comes at a time when the Alzheimer’s field is craving new approaches after billions of dollars have been spent on developing and testing treatments and some 200 drug trials have failed. It has been more than 15 years since the last treatment for dementia was approved, and the few drugs available do not work very well for very long."

Thanks to Professor Naomi Cahn for alerting me to this article.

The second article I wanted to mention also appeared recently in the New York Times. The Loneliness of Frontotemporal Dementiaoffers this description of the disease:

Frontotemporal dementia attacks people in their fifth or sixth decade, just as retirement comes within reach. Doctors believe the disease affects 60,000 people in the United States alone. Neurons in the front and side of the brain wilt, and along with them, images of peacefully growing old fade. Judgment and complex planning yields to chaotic disorganization. Inhibitions give way to impulsivity and hypersexuality, so that longtime faithful partners look to affairs and excessive pornography. Empathy turns to apathy. Obsessions and compulsions erupt. Language can become laborious; the meaning of words and objects can be lost, and fluent speech can dissolve into fragments of sentences with nonsensical grammar. Jarringly, memory remains largely untouched. Since brain areas that dictate personality are often the first to suffer, most people end up on a therapist’s couch long before finding their way to a neurologist.

The article examines the importance of support groups and how some individuals present with the disease.  There are some trials underway; "'[b]ecause frontotemporal dementia is often familial, we can get people into a trial before they have symptoms,' [according to one expert] 'By sequencing genes from a blood sample, we know which family members are probably going to get the disease. If we can slow down progression in those people, it’s virtually a cure.'”

 

Napping More Than Usual? Read This Article.

We have all had that after lunch afternoon slump where we just want a nap. Do you find yourself napping more than usual? There is a new study on changes to sleep-wake cycles and Alzheimer's. For the non-scientist like me, here's the USA Today story:  Napping more? That could be an early symptom of Alzheimer's, new study says.

So wait, don't panic if you are a normal napper.  Here's a segment from the article that explains: "People who develop Alzheimer's tend to sleep more during the day, taking naps or feeling drowsy and dosing off. Sometimes, they wake up during the night; that's called fragmented sleep .... If napping is a part of your routine on a regular basis though, you don't need to worry about taking an afternoon snooze, or mid-morning for that matter."  So it's all about the change in sleep patterns. Whew.

Here's the abstract for the article about the study.

Introduction

Sleep-wake disturbances are a common and early feature in Alzheimer's disease (AD). The impact of early tau pathology in wake-promoting neurons (WPNs) remains unclear.

Methods

We performed stereology in postmortem brains from AD individuals and healthy controls to identify quantitative differences in morphological metrics in WPNs. Progressive supranuclear palsy (PSP) and corticobasal degeneration were included as disease-specific controls.

Results

The three nuclei studied accumulate considerable amounts of tau inclusions and showed a decrease in neurotransmitter-synthetizing neurons in AD, PSP, and corticobasal degeneration. However, substantial neuronal loss was exclusively found in AD.

Discussion

WPNs are extremely vulnerable to AD but not to 4 repeat tauopathies. Considering that WPNs are involved early in AD, such degeneration should be included in the models explaining sleep-wake disturbances in AD and considered when designing a clinical intervention. Sparing of WPNs in PSP, a condition featuring hyperinsomnia, suggest that interventions to suppress the arousal system may benefit patients with PSP.

The full study is available here.