Thursday, January 25, 2018
As my blogging colleague Becky Morgan has highlighted in two of her posts this week, about a February conference at Hastings and recent proposals for "dementia advance directives," end-of-life decisions are increasingly high-profile topics for those working in law, medicine and ethics. Add to this the case under review in the Netherlands, where a physician described as a "nursing home doctor" performed euthanasia for a 74-year old woman with "severe dementia." A Dutch law legalizing euthanasia, that came into effect in 2002 and that was recently the subject of new "guidelines for performing euthanasia on people with severe dementia," is also under review. From Dutch News in September 2017:
The case centres on a 74-year-old woman, who was diagnosed with dementia five years ago. At the time she completed a living will, saying she did not want to go into a home and that she wished to die when she considered the time was right. After her condition deteriorated, she was placed in a nursing home where she became fearful and angry and took to wandering through the corridors at night.The nursing home doctor reviewed her case and decided that the woman was suffering unbearably, which would justify her wish to die.
The doctor put a drug designed to make her sleep into her coffee which is against the rules. She also pressed ahead with inserting a drip into the woman’s arm despite her protests and asked her family to hold her down, according to the official report on the death. This too contravenes the guidelines. Once the public prosecution department has finished its investigation it will decide whether or not the doctor, a specialist in geriatric medicine, should face criminal charges.
In reading articles about this matter, I'm struck by how often the articles (and my own post here) draw attention to the woman's age, comparatively "young" at 74, as well as the fact that her euthanasia directive written five years earlier also expressed her wish not to leave her home. If an individual is younger -- with dementia -- does that reduce society's willingness to "allow" aid in dying? If individuals are older -- and what age is old enough -- is it less controversial? And is a family bound by the individual's wishes not to leave her home? Tough questions, indeed.
This case has also drawn attention in commentary in the US, including a January 24, 2018 Washington Post piece with the provocative title, How Many Botched Cases Would It Take to End Euthanasia of the Vulnerable?
Monday, January 22, 2018
As I type this, it is 5 in the morning and I'm thinking about my "to do" list for the day. I've already baked cinnamon rolls, the kind my mom likes best. My list includes talking to my mother's accountant about a problem with W-2 tax forms for 2 of the 4 caregivers who help mom in her home. It includes setting an appointment wih the latest addition to the team, a physical therapist. I also need to get the forms from my mom's long-term care insurance company, to start the paperwork for an assessment. And, that leads into another item on my list, stopping at two residential living communities to drop off "deposits" to hold spots, while my sister and I work towards the possibility -- no, the probability -- of that difficult decision.
As I think about these small tasks, all of which I need to complete before I head to the airport for another red-eye flight between Arizona and Pennsylvania, I'm also thinking about how important friendships are in later life. Not just my mother's friends, but my own. Over the weekend, I spent lots of time talking with a long-time friend. We grew up together and used to ride horses. As I type this blog post, I can see a funny, faded, framed photo on the wall of my childhood bedroom showing the two of us, plus two more friends, competing as a team in a "4s" class, a riding event that probably no longer even exists. We look so serious as we tried to keep our three chestnut horses plus one palomino in step (and from kicking each other).
Our elder care interests and careers now overlap as she operates a small personal care home, licensed to provide assisted living. We sometimes joke that we started learning about caregiving in 4-H, although back then our charges were more likely to be critters. How I wish my friend's care center was an option for my mother, but unfortunately it is too far from my sister's home and job to be practical.
Instead, we talked strategies and other options. She had great advice about switching my mother over to electronic cigarettes, to make a transition to a "no smoking home" a bit easier. Her mother, who's close to my mother's age, is also struggling with staying in her own home. Ironic, isn't it, that my friend runs one of the best care homes in the city, but her mother won't even visit? Sort of like the elder law professor whose parents resisted making plans?
But, as my friend said this weekend, caregiving decisions somehow "seem" different when you are talking about your own parent. The same is true for elder law advice. Even as she and I were giving each other "great" advice, we knew it was hard to follow that advice for our own mothers as they resist major changes.
It was great to have her to talk with this weekend. My friend understood.
That wasn't the only important friendship over the weekend. One of my sister's long time friends interrupted a grocery shopping expedition and joined us on a car ride with our mother. Her lively, funny conversation kept the tone light and upbeat, even as we did our first drive-by with mom, to look at the outside -- just the outside -- of one care center option that is nearby. That friend, too, is caring for her mother and sometimes it is our turn to join them to create an "evening out "
Another friend this weekend is the gal who I came to know so well as the director of the wonderful place where my father lived for many months. She interrupted her "off duty" weekend to talk to me as a friend about choices.
A cherished neighbor and friend of my mother's also texted me early today, to ask about mom's weekend, even as she is juggling duties to help her husband in a rehab facility, where he is recovering from a broken hip.
I heard from a friend in Florida who lives in a terrific CCRC and she always offers a great ear and sage advice (along with lots of good leads for this Blog).
Another friend actually offered to fly out to Arizona to help -- and she lives in the Virgin Islands. She, too, is helping an aging parent in the states.
I know that when I return to my classrooms in Pennsylvania later this week, individual students will ask, "how did it go?" And they will undoubtedly surprise me with their patience with our interrupted syllabus and make-up classes.
Friends who understand.
I could keep typing for a long time to describe our many friends and the important roles we play in each other's lives. I know -- and hope -- that many of our readers are supported in their caregiving journeys by such wonderful "late-in-life" friendships. Thank you all,
A good friend and Penn State colleague, Dr. Claire Flaherty, a neuropsychologist at Penn State Hershey Medical Center, was part of a recent program explaining frontotemporal dementia, a condition which is often subtle, but nonetheless potentially devastating, especially when misdiagnosed. Here's the link to the podcast of the program, from a local television station in Pennsylvania.
Sunday, January 21, 2018
I read a recent article in the New York Times as part of the New Old Age Series. Paula Span writes One Day Your Mind May Fade. At Least You’ll Have a Plan. The article is about advance directives for those with dementia as discussed in a recent article published in the Journal of the American Medical Association (JAMA). The idea of the dementia-specific advance directive is to express your wishes based on the specific "phase" of dementia you may enter in the future. The website for this directive is here from which the 5-page directive may be downloaded. The NY Times article describes the directive "In simple language, it maps out the effects of mild, moderate and severe dementia, and asks patients to specify which medical interventions they would want — and not want — at each phase of the illness."
In the JAMA article, the authors make the case that other existing advance directives aren't particularly helpful for those with dementia because of the way it progresses over time with corresponding diminishing cognitive function (a subscription is required to access the article). The NY Times article notes that "[a]lthough [dementia] is a terminal disease, dementia often intensifies slowly, over many years. The point at which dementia patients can no longer direct their own care isn’t predictable or obvious. ... Moreover, patients’ goals and preferences might well change over time. In the early stage, life may remain enjoyable and rewarding despite memory problems or difficulties with daily tasks."
The dementia-specific directive describes the person's wishes as "goals of care" and offers four options for each stage of dementia, directing the person to "[s]elect one of the 4 main goals of care listed below to express your wishes. Choose the goal of care that describes what you would want at this stage." The directive divides dementia into three stages, mild, moderate and severe.
There are already a number of types of advance directives, with recent pushes for POLST and other initiatives such as the Conversation Project. Then there is the Five Wishes document, which as been around for a number of years. Attorneys may be incorporating dementia-specific instructions into advance directives already.
January 21, 2018 in Advance Directives/End-of-Life, Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care, State Cases, State Statutes/Regulations | Permalink | Comments (0)
Friday, January 19, 2018
UPitt Law Prof Larry Frolik Urges Change in Pennsylvania Guardianship Law to Clarify Lawyer's Role in Representing Alleged Incapacitated Persons
Larry Frolik, University of Pittsburgh Law Professor and all-round elder law guru, responds to a 2016 decision by the Pennsylvania Superior Court for In re Sabatino with a strong call for change in existing guardianship laws. In the abstract for his January 2018 article for the Pennsylvania Bar Association Quarterly on The Role of Counsel for an Alleged Incapacitated Person in Pennsylvania Guardianship Proceedings [currently membership-restricted], he writes:
When a petition is filed requesting that court find an individual to be incapacitated and appoint a guardian for the individual, the alleged incapacitated person [AIP] has a right to counsel. If the individual does not have counsel, the court may, but is not required to, appoint counsel. Whether counsel is hired by the [AIP] or appointed by the court, the question arises as to what is the proper role of counsel. Should counsel act solely as a zealous advocate and attempt to resist the imposition of the guardianship if so directed by the [AIP] or should counsel act in the best interest of the person with counsel making the determination of what is in the person's best interest?
A 2016 Superior Court case considered that issue and concluded that if the [AIP] desired not to have a guardian, counsel should so inform the court, but counsel, acting in what counsel believed was the person's best interest, could also tell the court that counsel believed that the person needed a guardian. That holding is not consistent with the fundamental obligation of counsel to advocate for what the client, the [AIP], desires. Counsel should not be making an independent determination that the person would be better served if a guardian were to be appointed. The decisions as to whether an [AIP] is legally incapacitated and, if so, whether the appointment of a guardian is appropriate, are decisions that only a court should make.
The Pennsylvania Legislature should amend the law of guardianship to clarify that the role of counsel for an [AIP] is that of a zealous advocate, and that counsel should not act in what counsel believes are the person's best interest. If the Legislature does not act, in the future courts should reexamine the issue and rule that counsel should act solely as a zealous advocate and not attempt to promote the person's best interest.
January 19, 2018 in Cognitive Impairment, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Legal Practice/Practice Management, State Cases, State Statutes/Regulations | Permalink | Comments (0)
Wednesday, January 17, 2018
I've sat in on dozens of mental acuity screening exams for individuals exhibiting indications of some form of dementia.
Regarding the "perfect score" reportedly received by President Donald Trump on a mental acuity screening test during his January health exam, it may be helpful to consider what is -- and isn't -- covered by such assessments. One view is provided in an opinion piece this week in the Washington Post, using history from a criminal case where Brooke Astor's son and an attorney were found guilty of exploiting her alleged mental incapacity. From the article:
On its surface, the Montreal Cognitive Assessment (MoCA) test seems pretty easy. Can you draw a three-dimensional cube? Can you identify these various animals? Can you draw a clock? Can you repeat back the phrase, “The cat always hid under the couch when dogs were in the room”? . . .
If you look at the test, it’s pretty hard to see how you could not score a 30. You see a picture of a lion and have to identify it as a lion? That old joke about how the elderly and toddlers are subject to the same indignities seems pertinent here: Is this really the bar that needs to be met to demonstrate full mental capabilities?
Well, according to those who study dementia and other mental deterioration, yes.
In 2009, I spent six months serving on a jury in the state of New York that was asked to judge the guilt or innocence of a man named Anthony Marshall. Marshall was the son of Brooke Astor, a New York socialite and heiress to the much-diminished Astor fortune. If you’ve ever traveled to New York, you’ve encountered the name: Astor Place, the Waldorf-Astoria or the Astoria neighborhood in Queens. Marshall was accused of having taken advantage of Astor’s diminished mental state to change her will without her being aware of the changes made. Ultimately, the 12 members of the jury found Marshall guilty of several charges.
Over the course of that trial, we were presented with a great deal of information about how doctors assess the mental capabilities of a patient. This was critical to the prosecution; were they not able to prove that Astor’s mental state was diminished, it undercut their argument that Marshall had acted without his mother’s consent. As such, expert witnesses testified about their personal examinations of Astor and others spoke to the reliability of the tests.
Central to that case was one of the components of the MoCA test: drawing a clock. Astor was asked repeatedly to draw analog clocks as a test of her mental acuity. On more than one occasion, she was unable to do so properly. . . .
The point is not that the test is easy. The point is that an inability to complete aspects of the test reveals different types of mental decline. The clock test is about executive brain function: memory, planning ahead. The different parts of the MoCA are labeled according to what they test, with the clock test falling under “visuospatial/executive.” Questions about the current year and date are under “orientation.” The request to identify a drawing of a camel is under “naming.” In the test’s scoring instructions, it explains what is covered: “attention and concentration, executive functions, memory, language, visuoconstructional skills, conceptual thinking, calculations and orientation.”
It is, as Trump’s doctor noted, a tool for identifying early signs of mental deterioration, like the mental version of a blood sample on which your doctor runs a battery of tests. It’s not the SAT; it’s a screening device.
For more, read Why You May Be Misunderstanding the Mental Test that Trump Passed with Flying Colors, by Philip Bump.
January 17, 2018 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Discrimination, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Science | Permalink | Comments (0)
Tuesday, January 16, 2018
My sister and I have been interviewing locations for several weeks as possible residential settings for our mother, especially as she is no longer able to handle the stairs in her two-story home, but feels trapped by not being able to choose on her own where to walk. We know that the best way to approach this task is in small doses, and to do it before there is an emergency that limits choices. This is actually our second go-round, as we also did this with Mom when we were looking at a place for Dad almost 5 years ago. But we have been very struck by the changes in the marketplace in just that short period of time:
- There are many new options, both large and small, that have come into being in just the last five or fewer years. We have looked at "classic" versions of continuing care communities, as well as what I would call "ala carte" pricing options for communities that offer a wide range of care alternatives, but each for a separate, escalating price and with no assurances of a placement. We've looked at both modest settings and high end "assisted living centers" that are so new the paint has not quite dried. But most of all, what we have found ourselves focusing on are smaller group homes, licensed under that state's law for "assisted living," and under that law the care includes almost all necessary care, other than certain so-called skilled services (such as catheters, feeding tubes, or I.V. hydration). We liked the small group setting because they often were in a neighborhood that would make our mother feel at home, while still offering a purposeful renovation that included carefully designed toilets, showers and flooring for easier movement. The price range is stunningly broad between these options, too.
- Doctors are not always the best advisors on choices. We have found that even though our mother has a wonderful primary care doctor, and even though that doctor makes it known that most of his patients are older, he did not seem to be aware that there are group home options. He kept telling us we'd need a "skilled care nursing home." But, as Mom has a pretty detailed end-of-live directive that rejects feeding tubes, and similar skilled care interventions, it seems clear to us that we can look at a well-run facility licensed for assisted living that will be able to provide appropriate care through her last days.
- A lot of the smaller places are accessed through what I would call "brokers." When you do internet research, the odds are that your first contacts will be with some kind of "finder." Most of these are paid by the facilities, rather than the families conducting the searches. As such, there is the clear potential for them to steer families to "their" facility clients. I know from insiders in the industry that the fees are often the equivalent of one month's fee at the chosen location. While not necessarily a negative, as a good broker is only successful if he or she really knows the available inventory of residential options, the fees are something that can dramatically impact smaller group homes that are operating on a narrower margin.
Additional trends we noticed? We discovered that a small group home that appears to be a "family" operation, may actually be part of a chain of homes with a single corporate owner. On the other hand, at several of the places we visited, we learned the owner had recently purchased another house in the same neighborhood, and was in the process of a second renovation. Also, as for staffing, we noticed that in certain parts of the city, all of the caregivers were immigrants from the same country, whether Poland or Pakistan or elsewhere. Another reminder that realistic immigration policies are a key component to senior living.
Finally, probably our strongest reaction was to differences in what can only be called old fashioned "customer service." One "famous," established CCRC completely lost our interest when the person at the front desk never made direct eye contact with us, instead keeping one hand on a cell phone and the other hand on a very dirty "wet wipe" she said she was using to clean surfaces because it was "flu season." It didn't help that we went through three different people to find one who could give us a tour during a scheduled visit (the first two were so new they didn't have knowledge of the full campus.) At the smaller group homes, we definitely noticed when the persons we met with greeted current residents by name as they gave us a tour. Also, did they know the names of their own staff members -- and did they introduce us to each other? When a trip hazard was lying in wait on the floor, did they pick it up -- or merely avoid it?
In addition to asking about staffing ratios and open visiting hours, we wanted to know about how long each of the staff members we met had worked at the particular place. Finally, our whole family likes dogs and therefore it was a plus when we found a place that had a "house dog" that the residents clearly loved, but we recognize that not every place can handle the extra work it takes to maintain a pet on site.
A sad irony is that it is unlikely our mother will live in the same care setting that was so perfect for our father. That place is an assisted living center with four cottages, purpose built for Alzheimer's care, on a five acre setting. But it has become clear to us that even though Mom was the one who chose it for Dad, and it is a wonderful place, with people we still love, our mother probably doesn't want it for herself. In the last few months of our father's residence there before his death, she visited less and less often, and we came to realize she had "already" rejected it for herself. It wasn't about memories of Dad; rather, it was about what it meant to "also" have the same cognitive impairment. The director, who has become a good friend of mine, said that is not unusual -- that even successful residential settings are rarely chosen by families for second or third placements because the next loved one can be hypersensitive to the reality of that choice. Senior care living -- a tough business in which to generate repeat business.
January 16, 2018 in Advance Directives/End-of-Life, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, Health Care/Long Term Care, Housing, State Statutes/Regulations | Permalink | Comments (1)
Monday, January 8, 2018
Over the holidays, unfortunately I had the experience of learning more about how older consumers struggle to understand what safe and effective treatments are available. In this instance, my mother, in her 90s, was experiencing overwhelming back pain. She has a long-history of osteoporosis (and it runs in the family on the female side, so my sister and I pay particular attention to this issue!) and in the last few weeks without any known "accident," she had begun to find it almost impossible to walk without pain. She's not the complaining type, and, having been raised by parents who were Christian Scientists, she tends to follow a "mind over matter" approach to this kind of problem. But, by Sunday last week, it was no longer possible to pretend she wasn't deeply uncomfortable.
We began another health care odyssey. Some of the steps we had already learned from past "holiday" experiences with my parents, including calling the "non-emergency" 911 number to get an experienced EMT evaluation of her status in the home, and, if necessary, a transport from her home to the emergency room. Then, recognizing that New Year's Eve is probably not the best night (if such a thing even exists) to spend in the local hospital's ER, we decided to go early in the morning.
Five hours after our arrival in the ER, we left with a new "LSO" back brace, instructions on how to use it, and prescriptions for a different walker and a new pain medication. On the latter point, we informed the ER physician of the fact Mom had not done well on narcotic pain relievers in the past ("why are those ants crawling on the walls") but we were told the drug prescribed was like a very strong Ibuprofen, but in a formulation that would not interact with the blood thinner she was on or her pacemaker.
We duly stopped at the pharmacy on the way home, and I signed my life away in order to pick up her prescription as she was unable to walk in to get it herself. When we got home, there were two documents in the bag with the prescription, including what I would call a typical "product insert" that looks like a page from the Physician's Desk Reference and a second sheet entitled "Directions for Use." The top of the instructions warned, "This is a narcotic drug and not recommended for the relief of pain in...." And then the list of disqualifying conditions included at least 3 of my mother's age-related conditions. Yikes!
My sister and I are not usually intimidated by product inserts, but here the instructions seemed directly at odds with our concerns about narcotics for mom. Everything we found on the internet only made us more confused and worried.
By this time it was late on New Year's Eve, her pain was increasing, and we knew we couldn't persuade her to go back to the ER and her primary care physician wasn't on call. The bottle said "every 6 hours." The ER physician had orally told us "every 6 to 8 hours," and finally we knew we had no choice -- her pain was real and we started using it at 12 hour intervals, gradually moving down to 8 hour intervals before she seemed to have real relief. It was another 5 days before her very kind primary care physician could squeeze us in for an appointment to have a more complete conversation -- and the good news is that we are now more comfortable about a longer range plan.
So on the heels of that multi-day experience, I was very interested in an article I spotted for my airplane trip home to Pennsylvania from Arizona. Phoenix Magazine had a detailed feature story in their January 2018 issue on "Pharma Chameleon," reporting on the arrest for fraud and racketeering charges of INSYS Therapeutics founder, a "billionaire executive" in Phoenix, well-known for his work on painkiller medicines. The history of this executive has nothing to do with my mother's pain relief medicine, but it was definitely a reminder that the pharmaceutical industry is deeply involved in pursuit of the "next" generation of painkillers. And, of course, this article contrasts with the recent news that a different drug company is dropping R & D for a dementia drug. Pain-killers are still "in," and dementia drugs apparently are "out."
So, I recommend the Phoenix Magazine article! I was particularly struck by this paragraph:
In November, Kapoor [the Phoenix-based INSYS executive arrested by the feds] pleaded not guilty to all charges and is currently awaiting trial, along with the six other former executives, who pleaded not guilty last January. All have severed ties with INSYS, which continues to do business. In July, it received FDA approval for a new drug, Syndros, a synthetic form of THC, the psychoactive component found in cannabis, to treat chemotherapy-induced nausea and loss of appetite in AIDS patients. As it did with Subsys, the company is looking into ways to manufacture the drug as a sublingual spray. Under Kapoor, the company donated $500,000 to the effort to defeat the measure to legalize marijuana for recreational use on Arizona’s 2016 general election ballot, paving the way for the synthetic substitute.
January 8, 2018 in Consumer Information, Crimes, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, Federal Statutes/Regulations, Health Care/Long Term Care, Science, State Cases, State Statutes/Regulations | Permalink | Comments (1)
Sunday, January 7, 2018
According to the Wall Street Journal, Pfizer Inc released a public statement on Saturday, January 6, 2018, announcing the end of R & D for new drugs for treatment of Alzheimer's Disease and Parkinson's Disease. The announcement reflected cost of efforts and the lack of success, and apparently the decision will mean layoffs for some 300 employees "over several months."
The Wall Street Journal also provided context for the disheartening decision:
Like several peers, Pfizer has invested heavily in developing treatments for Alzheimer’s and Parkinson’s because of the huge need. About 5.5 million Americans have Alzheimer’s, and the numbers are expected to rise as the population ages. Analysts say successful treatments for the memory-robbing disease could have multibillion-dollar sales potential.
But promising compound have repeatedly failed to work during testing.
The most recent disappointment took place last year, when a closely watched study of a treatment from Axovant Sciences Inc. called intepirdine failed to improve memory and learning in Alzheimer’s patients.
Companies that are still looking at possible Alzheimer's treatments include AstraZeneca, Biogen Inc, and Eli Lilly & Co., according to the WSJ article.
Thursday, December 28, 2017
A German nursing home is turning back the hands of time in an effort to better treat residents with dementia. The Washington Post story, A German nursing home tries a novel form of dementia therapy: re-creating a vanished era for its patients, explains how rather than trying to help residents remember, the facility takes them back to a specific period of time when they were younger. For example one "nursing home ... is trying to trigger [resident] ... memories by re-creating settings from [a prior] era as a form of therapy. While other nursing homes are also trying to help their residents remember details of their lives, what is going on here could well be the only concerted effort to re-create for its residents an entire historical era." This includes providing residents with tools they used in their jobs-but this only works if they liked their jobs, according to the article. Items are placed in "a memory room" for residents to visit. The staff had to become knowledgeable about the time period in order to appear as an authentic residents of the era. So far the facility focuses on two decades with plans to expand to encompass a third decade.
Thanks to my colleague, Professor Mark Bauer, for alerting me to the article.
Friday, December 22, 2017
For those of you from Florida, The Florida Supreme Court’s Guardianship Workgroup and Florida’s Working Interdisciplinary Networks of Guardianship Stakeholders (WINGS) will be holding a public hearing on Thursday, February 1, 2018 at the Orange County Courthouse from 4-7 p.m. The courthouse address is 425 North Orange Avenue, and the hearing will take place in Suite 180. According to the announcement
Members of the public will be able to share their concerns about guardianship and to identify possible solutions for those concerns. This event will help the Guardianship Workgroup and Florida’s WINGS advance guardianship reforms and increase the effectiveness of Florida’s guardianship systems.... Speakers are asked to address one of two questions:  If you could make one change in Florida’s guardianship system, what would it be? OR ...  How can courts improve their processes to better ensure protection of the person, property, and rights of individuals who are under guardianship or who need assistance making decisions? Comments should be succinct. A time limit will be imposed.
There are other ways to make your voice heard. Another public input event will take place in February in Central Florida. Comments may also be submitted through the WINGS website: https://flwings.flcourts.org/.
December 22, 2017 in Consumer Information, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Health Care/Long Term Care, State Statutes/Regulations | Permalink | Comments (0)
Wednesday, December 13, 2017
Are games and food supplements that promise to stave off the onset of dementia the modern day version of "snake oil?" I promised to write more about the Aging Brain Conference at Arizona State University's Sandra Day O'Connor College of Law on December 8, 2017. Speaker Dr. Cynthia Stonnington, Mayo Clinic, offered an important look at ways in which law, ethics, medicine, and commerce can collide with her survey of a host of approaches receiving "popular" press treatment.
She examined self-described "brain-training" programs, miracle diets, supplements and targeted exercise programs, noting that most studies that purport to demonstrate positive results from these items have serious flaws. Thus, at best, programs that claim to provide "protection" against dementia are usually promising more than has been proven. Dr. Stonnington, along with the morning keynote speaker, former U.S. Surgeon General Richard Carmona, reminded us that
- maintaining social engagement,
- engaging in lifelong learning,
- getting regular exercise of any type,
- having good blood pressure control,
- getting adequate sleep, and
- focusing on good nutrition (including eating plans such as the Mediterranean, DASH or MIND diets)
are far more important than any single, magic game or exercise.
One of the most lively discussions of the day came near the end, in response to presentations by Dr. Patrica Mayer of Banner Health in Phoenix, Amy McLean of Hospice of the Valley. and Life Sciences Professor Jason Robert (ASU) speaking for himself and Susan Fitzpatrick (James S. McDonnell Foundation), about end-of-life considerations for persons with dementia or other serious illnesses. What would be the most likely response of a physician or emergency personnel confronted with a "do not resuscitate" tattoo on the chest of an emergency patient? Dr. Mayer stressed that she is seeking reliable methods of communicating end-of-life wishes, and for her that means a preference for a written, Medical Power of Attorney. She wants that "live" interaction whenever possible, in order to fully explore the options for care for individuals unable to communicate for themselves. But she also noted a frequent frustration when she contacts designated POAs about the need to make tough decisions, only to learn they were completely unaware before that moment of having been named as the designated agent.
I was part of a panel of court-connected speakers, including Arizona Superior Court Judge Jay Polk (Maricopa County), neuropsychologist (and frequent expert witness) Elizabeth Leonard, and experienced Phoenix attorney Charles Arnold. I was interested to hear about -- and will pursue more information on -- the psychologists' use of evaluative tools for clients that use scenarios that would appear to test not just for loss of memory, but impaired judgment. I was speaking on the unfortunate need for judicial inquiries into "improvident transactions" by persons with problematic cognition and I used litigation approaches from other locations -- Ireland (common law) and Maine (statutory) -- as examples. The Arizona legal experts reminded me to take a closer look at Arizona's financial exploitation laws.
For more from this conference, see Learning to Say the Word "Die" -- about a pilot program developed by Dr. Mayer while she was an advanced bioethics fellow at the Cleveland Clinic. I also recommend Dr. Mayer's article on CPR & Hospice: Incompatible Goals, Irreconcilable Differences,
December 13, 2017 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Estates and Trusts, Ethical Issues, Games, Health Care/Long Term Care, Legal Practice/Practice Management, Programs/CLEs, Science, Statistics | Permalink | Comments (0)
Tuesday, December 12, 2017
The "Aging Brain" Conference hosted by Arizona State University's Sandra Day O'Connor College of Law held on December 8, 2017 at the Sandra Day O'Connor United States Courthouse in Phoenix (that's a double helping of Sandra!) proved to be a fascinating, deep dive into the intersection of medicine, ethics and law with a focus on neurocognitive diseases, including Alzheimer's Disease. The panelists and audience included academics in a wide range of fields, plus practitioners in medicine, law, social services, and more, along with both state and federal judges. United States District Judge Roslyn Silver is a long-time supporter of law and science programming with ASU.
One of the important themes that emerged for me was the growing significance of pre-symptomatic tests that can disclose genetic markers associated with greater incidence of an eventual, active form of a degenerative brain disease. Neurologist Richard Caselli from Mayo Clinic and Jessica Langbaum, principal scientist with Banner Alzheimer's Institute laid out the latest information on a variety of genetic testing options, including the possibly mixed results for "risk" connected to positive results for specific genetic markers. A provocative question by a morning speaker, Law and Biosciences Professor Henry T. Greely at Stanford, captured the personal dilemma well, when he asked the audience to vote on how many would want to to know the results of a genetic test that could disclose such a connection, especially as there is, as yet, no known cure or even any clear way to prevent most neurocognitive diseases from taking hold.
Taking that a step further, how many of us would want our employer to know about that genetic marker results? How about our health insurers? As we discussed at the conference, some consumer information is already available through "popular" ancestry testing sites such as "23 and Me," which expressly offers testing for "genetic health risks," including "late-onset Alzheimer's Disease and Parkinson's Disease." Arizona State Law Professor Betsy Gray, director of the Law & Neuroscience Program for ASU's Center for Law, Science and Innovation, who master-minded the conference, helped to identify a host of legal and ethical issues connected to this developing world of science and medicine. Jalayne J. Arias, a full-time researcher at University of California San Francisco's Neurology, Memory and Aging Center (and clearly a rising academic star and graduate of ASU Law) outlined the implications of pre-symptomatic testing from the perspective of long-term care insurance. For more from Professor Arias, I recommend her 2015 paper for the Journal of Clinical Ethics on Stakeholders' Perspectives on Preclinical Testing for Alzheimer's Disease.
I plan to write more about this conference, as many perspectives on legal, ethical and medical questions were offered.
Wednesday, December 6, 2017
On December 8, 2017, I'm excited to be participating in a conference on The Aging Brain: Legal, Policy & Ethical Perspectives, in Phoenix, Arizona. This program is a follow-up to an interdisciplinary workshop hosted at Arizona State University's Sandra Day O'Connor School of Law in the fall of 2016. This year's presentations will take place at the the United States Courthouse in Phoenix.
The planned schedule is jam-packed with speakers I'm looking forward to hearing, including:
Welcome: Betsy Grey, Sandra Day O’Connor College of Law, ASU
Introduction: Dean Douglas Sylvester, Sandra Day O’Connor College of Law, ASU
Keynote Speaker:Richard H. Carmona, M.D., M.P.H., FACS, 17th Surgeon General of the United States, Chief of Health Innovations, Canyon Ranch, Distinguished Professor, University of Arizona
Scientific Developments in Aging and Dementia: Pre-Symptomatic Screening for Neurodegenerative Diseases
Panel Chair: Hon. Roslyn O. Silver, U.S. District Court for the District of Arizona
- Dr. Richard Caselli, Mayo Clinic
- Dr. Jessica Langbaum, Banner Alzheimer's Institute
- Dr. Cynthia M. Stonnington, Mayo C;inic
- Jalayne J. Arias, UCSF Neurology, Memory and Aging Center
- Henry T. Greely, Stanford Law School
Aging at Home
Panel Chair: Larry J. Cohen, The Cohen Law Firm
- David Coon, College of Nursing & Health Solutions, ASU
- Kent Dicks, Life365, Inc.
Panel Chair: Charles L. Arnold, Frazer Ryan Goldberg & Arnold, LLP
- Hon. Jay M. Polk, Probate Dep’t. Associate Presiding Judge, Superior Court of Arizona for Maricopa County
- Katherine Pearson, Dickinson School of Law, Pennsylvania State University
- Dr. Elizabeth Leonard, Neurocognitive Associates
- Betsy Grey, Sandra Day O’Connor College of Law, ASU
End of Life
Panel Chair: Dr. Mitzi Krockover, Health Futures Council at ASU
- Jason Robert, Lincoln Center for Applied Ethics, ASU
- Amy McLean, Hospice of the Valley
- Dr. Patricia A. Mayer, Banner Baywood & Banner Health Hospitals
Dr. Susan Fitzpatrick, President, James S. McDonnell Foundation
Introduction by Jason Robert, Lincoln Center for Applied Ethics, ASU
December 6, 2017 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Estates and Trusts, Ethical Issues, Federal Cases, Health Care/Long Term Care, Science, Statistics | Permalink | Comments (0)
Thursday, November 30, 2017
Recently I wrote about a high profile suit filed by AARP attorneys on behalf of residents at a California skilled care (nursing home) facility to challenge evictions.
I've also been hearing about more attempts to evict residents from Continuing Care Communities, also known as CCRCs or Life Plan Communities. For example, in late 2016 a lawsuit was filed in San Diego County, California alleging a senior's improper eviction from a high-end CCRC. The woman reportedly paid a $249k entrance fee, plus additional monthly fees for 15 years. When she reached the age of 93, however, the CCRC allegedly evicted her for reasons unconnected to payment. The resident's diagnosis of dementia was an issue. Following negotiations, according to counsel for the resident, Kelly Knapp, the case reportedly settled recently on confidential terms.
Is there a trend? Are more CCRC evictions happening, and are they more often connected to a resident's diagnosis of dementia and/or the facility's response to an increased need for behavioral supervision? If the answer is "yes," then there is a tension here, between client expectations and marketing by providers. Such tension is unlikely to be good news for either side.
CCRCs are often viewed by residents as offering a guarantee of life-time care. Even if any promises are conditional, families would not usually expect that care-needs associated with aging would be a ground for eviction.
The resident and family expectations can be influenced by pricing structures that involve substantial up-front fees (often either nonrefundable or only partially refundable), plus monthly fees that may be higher than cost-of-living alone might explain. Marketing materials -- indeed the whole ambiance of CCRCs -- typically emphasize a "one stop shopping" approach to an ultimate form of senior living.
In one instance I reviewed recently, the materials used for incoming residents explained the pricing with a point system. The prospective resident was told that in addition to the $100+k entrance fee, an additional daily fee could increase as both "medical and non-medical" needs increased. A resident who "requires continual and full assistance of others . . . is automatically Level C" and billed at a higher rate. The graded components included factors such a need for assistance with "cognition, mood, or behavior," or "wandering." All of that indicates dementia care is part of the "continuing" plan.
CCRCs, on the other hand, may turn to their contract language as grounds for an eviction. Contracts may have language that attempts to give the facility sole authority to make decisions about a resident's "level" of care. Sometimes that authority is tied to decisions about "transfers" from independent living to assisted living or to skilled care units within the same CCRC, as the facility sees care needs increasing. Even same-community transfer decisions can sometimes be hard for families. Complete evictions can be even harder to accept, especially if it means a married couple will be separated by blocks or even miles, rather than hallways in the same complex.
November 30, 2017 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, Federal Cases, Federal Statutes/Regulations, Health Care/Long Term Care, Housing, Medicaid, Medicare, Property Management, State Cases, State Statutes/Regulations | Permalink | Comments (1)
Sunday, November 26, 2017
The Canadian Centre for Elder Law (CCEL) released a new report, Report On Vulnerable Investors: Elder Abuse, Financial Exploitation, Undue Influence And Diminished Mental Capacity, which can be downloaded as a pdf here. The report was a joint project between CCEL and FAIR (Canadian Foundation for Advancement of Investor Rights). Here is the executive summary of the report
Canadian investment firms and their financial services representatives1 (hereinafter referred to as "financial services representatives" or simply "representatives") serve millions of vulnerable investors, many of whom are older Canadians. Vulnerable investors may be persons living in isolated, abusive or neglectful situations which can make them more likely to be subject to undue influence. They also may be persons with diminished mental capacity due to health issues, developmental disability, brain injury or other cognitive impairment. Such social vulnerabilities may be episodic, or long-term.2
Who is a Vulnerable Investor?
Older investors, persons with fluctuating or diminished mental capacity, and adults who are subject to undue influence or financial exploitation are collectively referred to in this report as vulnerable investors. This concept of vulnerability is often a contentious one. This report uses the term "vulnerable" to refer to social vulnerability, and does not ascribe vulnerability to older persons as an inherent personal characteristic.3 Rather, the term reflects an understanding that differing social conditions may make a person more or less vulnerable. Individual older investors may personally not be socially vulnerable. But as a group, older individuals may be subject to external conditions—such as ageism—that negatively affect them. This report specifically notes that ageism can make older people broadly vulnerable as a class, even while individual older adults may not be, or identify, as particularly vulnerable themselves.
This report adopts the core aspects of the Quebec definition of vulnerable investor. A vulnerable investor is a person who is in a vulnerable situation, who is of the age of majority, and lacks an ability to request or obtain assistance, either temporarily or permanently, due to one or more factors such as a physical, cognitive or psychological limitation, illness, injury or handicap.
It is important, and a goal of this report, to highlight the increased social vulnerability risks associated with aging and to raise awareness that aging life-course benchmarks may trigger a representative to start ensuring that increased appropriate protections or standards are in place. In this way, the issue of older investors will be drawn to the fore, without supporting the myth that all old people are vulnerable and in need of protection.
Actions by Attorneys and Their Investigators Trigger Sanctions Affecting the Underlying False Claims Act Suit
A decision earlier this year in a qui tam suit, alleging the submission of false claims to Medicare for the off-label prescription of a drug for dementia, seems especially interesting in light of recent high profile allegations involving Harvey Weinstein's alleged use of private investigators to befriend his victims in order gather information.
In the qui tam suit the drug in question was Namenda, described in the opinion as "approved by the FDA for treatment of moderate to severe Alzheimer's disease," but allegedly also promoted illegally by the companies for prescription to individuals with milder stages of dementia. In Leysock v. Forest Laboratories, et al, the United States District Court in Massachusetts dismissed the complaint as a sanction for conduct by the plaintiff's attorneys and the investigator hired by those attorneys:
The present dispute arises out of the conduct of counsel for relator, the Milberg law firm, in investigating the case. As set forth below, Milberg attorneys engaged in an elaborate scheme of deceptive conduct in order to obtain information from physicians about their prescribing practices, and in some instances about their patients. In essence, Milberg retained a physician and medical researcher, Dr. Mark Godec, to conduct a survey of physicians concerning their prescription of Namenda to Medicare patients. In order to obtain the cooperation of the physicians, Dr. Godec falsely represented that he was conducting a medical research study. Dr. Godec, at Milberg's direction, conducted two internet-based surveys as well as follow-up telephone interviews. Among other things, the physicians were induced to provide patient medical charts and other confidential medical information to Dr. Godec. Information derived from those surveys was then set out in the Second Amended Complaint in this action, and was relied on by the Court in denying defendant's motion to dismiss in 2014.
Defendants have now moved to dismiss the Second Amended Complaint as a sanction for alleged violations of attorney ethical rules. For the reasons stated below, that motion will be granted.
November 26, 2017 in Cognitive Impairment, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, Federal Cases, Federal Statutes/Regulations, Health Care/Long Term Care, Medicare | Permalink | Comments (0)
Wednesday, November 22, 2017
One of the many things that I am thankful for is the assistance of kind and patient individuals who have helped my mother and father for more than five years, as age-related issues make my parents' lives more challenging. On the top of my list is my sister -- who is a constant, loving presence -- and who makes it all possible. She tolerates my jet-fueled attempts to help on my drop-in visits to Arizona from Pennsylvania.
Our father was at home with progressing dementia for more than two years before it became necessary to find a dementia-care living center that could provide a safer setting. For most of that time, we had 24/7 assistance in the home -- and we still have help now for our mother at home.
But, it just become too hard for Dad at home, especially as the multilevel, 90-year old house was full of traps for his unsteady steps. Mom participated in the search for a better setting. When the time came, she made the ultimate decision about where and when. While the transition was anything but easy, with every passing day we knew more clearly it was the right decision.
On good days, Dad would declare to anyone who was passing, "this is a very good place." He was usually sitting on his favorite bench in the center courtyard, holding "court" with everyone who walked by on the five acre campus. (On a bad day, he might ask rather insistently for a cigarette, something he hadn't done in 50 years!).
My sister and I came to revel in the holiday parties organized by the caring staff. We knew the parties would be festive, with great food and often with music and dancing, and that extended families would join together. One holiday, another visiting son who looked about my age, asked my name and it turned out we had attended high school together, not far down the road. A modern way to hold a "high school reunion," right?
Dad's center was entirely devoted to residents with dementia, with or without additional physical disabilities. Once a resident was admitted, and as long as they did not need certain types of skilled medical care (such as IVs), the Center could be their home until the last days. I'm still in touch with members of the staff who helped my Dad, and I think of all of them with fondness and gratefulness.
Each year we celebrated a traditional Thanksgiving meal at Dad's center (usually a few days before the actual holiday) as a big group. On Dad's last Thanksgiving, in 2016, families gathered on the covered porches of each of the four cottages in the community. It was a typically warm -- but also an atypically rainy -- November day in Phoenix.
A key to the success at Dad's center is a setting that facilitates behavioral approaches to dementia care, rather than drugs or restraints. The 48 residents -- 12 per cottage -- have free run of the secure campus, and in Dad's case he used every inch. His walking grew stronger in the early days after his admission (even with his "bad" knee), while the agitation and anger he had while at home eased significantly. For the first time in more than a decade, his blood pressure stabilized and we soon realized even his hearing and vision improved.
Dad was at the center just a week shy of three years, passing at age 91. Of course, after the initial improvement in strength with his regular walking, his fragility over the years increased slowly, but he was still out and about until his last two weeks. Two of his former judicial law clerks visited Dad close to Thanksgiving last year. Such kindness from everyone.
I commented near the end of Dad's time at the center, while chatting with the Director, that perhaps some of the residents might enjoy having more "reasons" to walk. I suggested the possibility of a mail box, where residents could collect or deliver cards and letters, both real and "created" especially for the holiday.
This is a community that welcomes suggestions -- and doesn't ignore them -- and thus I was pleased but not really surprised to get an email this week from the Director. Dad passed away some 10 months ago, but the staff nonetheless took action -- installing an old-fashioned mailbox outside each cottage, with decorations to help residents identify their home spot. I hear deliveries are made regularly -- even on holidays! I like to think how much Dad would have enjoyed being part of the postal delivery.
My thanks to everyone who is part of a care-giving team. You mean so much to all of us. Happy Thanksgiving to all of you and your families!
Friday, November 17, 2017
The issue of "evictions" in residential facilities for older adults has long been on my radar screen, and I was especially interested to hear (and read) news of a lawsuit initiated by the AARP Foundation Litigation (AFL) against a California skilled nursing facility and its parent entity following the facility's refusal to "readmit" an 82 year-old resident following her temporary hospital stay. As reported by NPR for All Things Considered on November 13, 2017:
[The Defendants] say that she became aggressive with staff and threw some plastic tableware. So Pioneer House called an ambulance and sent her to a hospital for a psychological evaluation. The hospital found nothing wrong with her, but the nursing home wouldn't take her back. They said they couldn't care for someone with her needs. Jones protested his mother's eviction to the California Department of Health Care Services. The department held a hearing. Jones won.
"I expected action — definitely expected action," says Jones. Instead, he got an email explaining that the department that holds the hearings has no authority to enforce its own rulings. Enforcement is handled by a different state agency. He could start over with them.
This Catch-22 situation attracted the interest of the legal wing of the AARP Foundation. Last year, attorneys there asked the federal government to open a civil rights investigation into the way California deals with nursing home evictions. Now, they're suing Pioneer House and its parent company on Gloria Single's behalf. It's the first time the AARP has taken a legal case dealing with nursing home eviction.
For more, read AARP Foundation Sues Nursing Home to Stop Illegal Evictions.
My thanks to my always alert colleague, Dickinson Law Professor Laurel Terry, for sharing this item.
November 17, 2017 in Consumer Information, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Federal Statutes/Regulations, Health Care/Long Term Care, Housing, State Cases, State Statutes/Regulations | Permalink | Comments (0)
Wednesday, November 15, 2017
Shortages of Specialists to Screen and Diagnose Early Stages of Neurocognitive Diseases Are Part of the Looming Problem
A recent study by the Rand Corporation points to related problems with diagnosis AND treatment of Alzheimer's Disease and other neurocognitive disorders. Even as there is a growing need for effective treatment, there are "too few medical specialists to diagnose patients who may have early signs of Alzheimer's" and thus become eligible for therapies that might slow or or halt progression of such diseases. From the Rand news release:
“While significant effort is being put into developing treatments to slow or block the progression of Alzheimer's dementia, little work has been done to get the medical system ready for such an advancement,” said Jodi Liu, lead author of the study and a policy researcher at RAND, a nonprofit research organization. “While there is no certainty an Alzheimer's therapy will be approved soon, our work suggests that health care leaders should begin thinking about how to respond to such a breakthrough.”
An estimated 5.5 million Americans live with Alzheimer's dementia today, with the number projected to increase to 11.6 million by 2040.
Advanced clinical trials are underway for at least 10 investigational therapies that have shown promise in slowing or blocking development of Alzheimer's disease. Researchers say the progress provides guarded optimism that a disease-modifying therapy could become available for routine use within a few years.
Liu and her team examined the pathway patients would likely take to receive an Alzheimer's therapy and created a model to simulate the pressures that such an approved therapy would put on the health care system.
The analysis assumes that a therapy is approved for use beginning in 2020 and screening would begin in 2019, although researchers stress that the date was chosen only as a scenario for the model, not as a prediction of when a therapy may be approved.
Under such a scenario, about 71 million Americans aged 55 and older would have to be screened for signs of mild cognitive impairment. After follow-up examinations and imaging to confirm evidence of Alzheimer's, the RAND analysis estimates 2.4 million people ultimately could be recommended for treatment.
For additional analysis, see The Washington Post's article from its Business Section, We're So Unprepared for Finding An Alzheimer's Treatment.
Special thanks to George Washington Law Professor (and friend) Naomi Cahn for making sure we did not miss this item.