Monday, March 2, 2015
Alzheimer's Research UK is releasing a report this month about the impact of dementia on women. Details released in advance of the formal launch are eye-opening.
As reported in The Guardian, “'Dementia is a life-shattering condition and represents a ‘triple whammy’ for women,' said Hilary Evans, director of external affairs at Alzheimer’s Research UK. 'More women are dying of dementia, more women are having to bear the burden of care, while a disproportionate number of women currently working in dementia research are having to leave science.'”
The full study calls for the government to make a significant increase in its funding of dementia research and an improved investment in care. Further, the report will explain that:
■ More than 500,000 women [in the U.K.] are now affected by dementia. About 350,000 men have the condition.
■ Women over 60 are now twice as likely to get dementia as breast cancer.
■ Women are more than two-and-a-half times more likely than men to be care-givers of people with dementia.
■ Most care- givers do not choose or plan to take on this role and often find the experience highly stressful.
Thanks to friends at CARDI, the Centre for Ageing Research and Development in Ireland for sharing this news. The formal launch of the Alzheimer's Research UK report appears timed to coincide with their "sold-out" 2015 Conference on March 10-11 in London.
Thursday, February 26, 2015
The New York Times offers dramatic front page coverage of a criminal trial against ten defendants in France, accused of manipulation of Liliane Bettencourt, the 92 year-old heir of the L'Oreal cosmetics fortune. The defendants include a "celebrity photographer" (and his "long-time companion"), a former wealth manager, and an 81-year-old notary "who certified, with misgivings, Mrs. Bettencourt's decision to make" the 67-year-old photographer her sole heir, cutting out her only daughter.
Serious money is involved, with Forbes once estimating Mrs. Bettencourt's fortune at more than $40 billion. She has been diagnosed with "dementia and moderately severe Alzheimer's."
The prosecutors said her advanced age, the beginnings of dementia and a daily medical regimen of 56 pills, including antidepressants, also invited exploitation. And investigators contend that the schemes were so widespread that they included a political scandal involving a former finance minister seeking cash for the 2007 presidential campaign of Nicolas Sarkozy.
Some of the house staff members risked their jobs to challenge her advisers and confidants, particularly a French society photographer who gained the largest share of her fortune. At one point, investigators estimated that share to be about a billion euros, or $1.13 billion, in gifts during 20 years of friendship ending in 2010.
“Liliane wanted to do things for me, to ease my life,” testified the photographer, François-Marie Banier, 67, who is facing the highest penalty of the defendants, three years in prison. “I refused things like a mansion. But she took it so poorly. It’s really hard to cross that extraordinary woman.”
For all the details, sadly familiar if you followed the Brooke Astor history of wealth and manipulation, about the trial that just ended before a panel of judges who will issue their verdict on May 28, read "The Case of L'Oreal Heiress, A Private World of Wealth Becomes Public."
February 26, 2015 in Cognitive Impairment, Crimes, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, International | Permalink | Comments (0) | TrackBack (0)
The movie, Still Alice, has been released. Starring Julianne Moore in the role of the lead character, the movie is based on the book by the same name written by Lisa Genova. The book and movie are about a professor who has early onset Alzheimer's. The synopsis from the movie's website describes the movie this way:
Alice Howland, happily married with three grown children, is a renowned linguistics professor who starts to forget words. When she receives a diagnosis of Early-Onset Alzheimer's Disease, Alice and her family find their bonds thoroughly tested. Her struggle to stay connected to who she once was is frightening, heartbreaking, and inspiring.
Tuesday, February 24, 2015
The Administration for Community Living (ACL) has announced an upcoming webinar, Intellectual & Development Disabilities & Dementia-Experiences of a Family Advocate & Promising Practices. The webinar is scheduled for February 26, 2015 from 3-4 p.m. est. Registration is free. The program website offers this description of the webinar:
The February 26th webinar will provide participants with information on personal experiences, advocacy efforts, and helpful practices for people with intellectual and developmental disabilities (ID/D) and dementia. Mary Hogan will speak about her personal experience as guardian for her late brother and an advocate for her brother and others with intellectual and developmental disabilities and dementia. Phil McCallion will speak about promising practices of how to work with people with ID/D and dementia.
To register, click here.
Monday, February 23, 2015
On Saturday, I had the privilege of attending the 7th Annual Conference of the Pennsylvania Association of Elder Law Attorneys (PAELA), to give a presentation with Dr. Claire Flaherty, a Penn State Hershey Medical Center neuropsychologist with special expertise in frontal and temporal lobe impairments, on "Dementia Diagnosis and the Law."
Another speaker, Teepa Snow, an occupational therapist with long-experience in behavioral health, brain injury and dementia care, spoke on Sunday.
It was one of the rare times when I've been glad to be "snowed in" at a conference, as that kept me in place for both days of the presentations, rather than rushing home to work on some other task.
One of the topics that was discussed by attendees over the two days was the question of whether testimony by witnesses who observe "moments of lucidity" -- standing alone -- is proper support for a finding of "legal capacity." Context is important, of course, as both common law and statutory law increasingly recognize that capacity should be evaluated in terms of specific transactions.
My own takeaway from the health care experts was the need for some measure of caution in this regard. With many forms of dementia, especially at the early stages, unrecognized impairment of judgment may precede recognized impairment of memory. In other words, as I understand it, we may spend too much time being impressed by a client's ability to remember who is the president or the names of their children, and too little time asking more probing questions. Deeper inquiry may reveal or ameliorate concerns about judgment, including an individual's current abilities to make decisions, make reasonable, rational connections in formulating or following a plan, and related skills such as empathy or self-awareness.
Along this same line, it is a good time to remind readers that there are three useful handbooks on "Assessment of Older Adults With Diminished Capacity," one directed to lawyers, one to psychologists, and one for judges, that were created by experienced professionals working as a team on behalf of the American Bar Association and the American Psychological Association (APA). Individual copies can be downloaded without cost from the APA website.
Wednesday, February 18, 2015
A long-running investigation of a doctor in Illinois for Medicaid and Medicare fraud is coming to a close. Michael Reinstein, "who for decades treated patients in Chicago nursing homes and mental health wards," has pleaded guilty to a felony charge for taking kickbacks from a pharmaceutical company. As detailed by the Chicago Tribune, on February 13, Reinstein admitted prescribing, and thus generating public payment for, various forms of the drug clozapine, widely described as a "risky drug of last resort."
The 71-year old doctor has been the target of the state and federal prosecutors for months, and he's also agreed to pay (which is, of course, different than actually paying) more than $3.7 million in penalties. He may still be able to reduce his prison time from 4 years to 18 months, if he "continues to assist investigators."
The investigation traces as far back as 2009, as detailed by a Chicago-Tribune/ProPublica series that revealed he had prescribed more of the antipsychotic drug in question to patients in "Medicaid's Illinois program in 2007 than all doctors in the Medicaid programs of Texas, Florida and North Carolina combined." Further, the Tribune/ProPublica series pointed to autopsy and court records that showed that, "by 2009, at least three patients under Reinstein's care had died of clozapine intoxication." Reinstein's, and one assumes, the pharmaceutical company's, defense was that the drug could have appropriate, therapeutic effects for patients, beyond the limited "on-label" realm.
Assuming that the government ever sees a dime in repayment, from either the doctor or the drug company, my next question is what happens to that money? At a minimum, shouldn't there be review of the effect of the drugs on these patients, some of whom may have been administered the drug for years? We keep reading that the drugs are "risky," but shouldn't there be evidence of real harm -- or perhaps even benefit -- from the documented "off-label" use? Certainly, prosecutions for off-label drugs are understandable attempts to claw-back, or at least reduce, public expenditures. But isn't more at stake, including the search for relief or workable solutions for patients who are in distress?
In March 2014, for example, Teva Pharmaceutical Industries Ltd., the maker of generic clozapine, reportedly agreed to pay more than $27.6 million to settle state and federal allegations that it induced Reinstein to prescribe the drug. Recovering misspent dollars is important. But I also would like to see evidence of the harm alleged by the government -- or the benefit asserted by the defendants -- from the administration of the drugs. Isn't objective study of the history of these real patients a very proper use of the penalties?
February 18, 2015 in Cognitive Impairment, Consumer Information, Crimes, Dementia/Alzheimer’s, Ethical Issues, Federal Cases, Federal Statutes/Regulations, Health Care/Long Term Care, Medicaid, Medicare, State Cases | Permalink | Comments (0) | TrackBack (0)
Wednesday, February 11, 2015
The Bureau of Justice Administration (BJA) along with Center for Public Safety and Justice have released a guide for law enforcement on dealing with individuals with Alzheimer's. Alzheimer's Aware: A Guide for Implementing a Law Enforcement Program to Address Alzheimer’s in the Community is designed to help law enforcement create a community program to deal with the potential interaction with a person with Alzheimer's. This booklet identifies a number of scenarios when an officer might interact with a person with Alzheimer's. The tools provided by this initiative is designed
to assist in the development and implementation of a community educational campaign by, or n partnership with law enforcement. The resources have recommendations for developing a strategic plan with practical action steps and activity implementation, in order to develop a holistic community approach to responding in crisis situations, involving persons with Alzheimer’s disease, as well as increase awareness of Alzheimer’s and other forms of dementia.
The booklet includes recommendations for law enforcement to develop a program on making their officers aware of Alzheimer's and the issues they may encounter. These include officer training, policy reviews, creation of a "local registry", encouraging the use of monitoring technology or wearable devices and collecting statistics.
Tuesday, February 10, 2015
With the shift from defined benefit pensions to 401(k)plans, the welfare of retirees increasingly depends on their ability to make sound financial decisions. This situation has raised concerns that the cognitive decline that comes with age could compromise the elderly’s decision-making ability and thereby their financial well-being. This brief, based on a recent study,1 addresses this issue using a unique dataset that follows a group of elderly individuals over time.
The report is divided into four parts: literature review, data, analysis and conclusion. The conclusion paints an interesting picture
The findings confirm that declining cognition, a common occurrence among individuals in their 80s, is associated with a significant decline in financial literacy. The study also finds that large declines in cognition and financial literacy have little effect on an elderly individual’s confidence in their financial knowledge, and essentially no effect on their confidence in managing their finances. Individuals with declining cognition are more likely to get help with their finances. But the study finds that over half of all elderly individuals with significant declines in cognition get no help outside of a spouse. Given the increasing dependence of retirees on 401(k)/IRA savings, cognitive decline will likely have an increas-ingly significant adverse effect on the well-being of the elderly.
Monday, February 9, 2015
I received an email recently from the National Center on Elder Abuse listserv about free training materials. The National Council of Certified Dementia Practitioners/International Council of Certified Dementia Practitioners are offering for free their toolkits and in-service materials through March 15, 2015. Sign up here for the free training materials. There is a wide array of topics available, including a large library of dementia topics and some on elder abuse. According to the website, the took kits include the following:
Free Power Point / Over Head In-services for Health Care Staff, Tests and Answers, Seminar Evaluation and Seminar Certificates
97 Ideas To Recognize Alzheimer's Disease and Dementia Care Staff Education Week
20 Reasons Why You Should Provide Comprehensive Alzheimer's Disease and Dementia Training to Your Staff by A Live Instructor
Dementia Word Search Games & Interactive Exercises
Movies and Books About Alzheimer’s You Don’t Want To Miss
Proclamation & Sample Agenda for Opening Ceremony & Sample Letter to Editor
Contest Entry Forms- Staff Education week
Alzheimer’s Disease Bill of Rights & Alzheimer’s Patient Prayer
Nurse Educator / In-service Director of The Year Nomination Form
Corporate and Associate Membership Forms
Songs to Inspire You
Letter to the Editor
Monday, February 2, 2015
A recent blog post on the Administration for Community Living (ACL) discusses supported decision-making. Preserving the Right to Self-determination: Supported Decision-Making discusses the limitations of guardianships for decision-making by those individuals with dementia, intellectual or developmental disabilities and explains why supported decision-making may be a better choice.
Supported decision-making starts with the assumption that people with intellectual and developmental disabilities and older adults with cognitive impairment should retain choice and control over all the decisions in their lives. It is not a program. Rather, it is a process of working with the person to identify where help is needed and devising an approach for providing that help. Different people need help with different types of decisions. For some, it might be financial or health care decisions. Others may need help with decisions surrounding reproductive rights or voting. Some may need help with many types of decisions, while others need help with only one or two.
The solutions also are different for each person. Some people need one-on-one support and discussion about the issue at hand. For others, a team approach works best. Some people may benefit from situations being explained pictorially. With Supported decision-making the possibilities are endless.
The blog goes on to explain "a cooperative agreement" with Quality Trust for Individuals with Disabilities where they will
build a national training, technical assistance, and resource center to explore and develop supported decision-making as an alternative to guardianship. The resource center will gather and disseminate data on the various ways in which supported decision-making is being implemented and generate research in the area. Our goal is that the information collected during the period of this cooperative agreement will lead to a model that will help states as they consider alternatives to guardianship.
I suspect that every law professor has had the experience of running into an individual -- perhaps in an airport -- who enthusiastically exclaims, "Professor So and So, do you remember me!?" Near the end of my class of 1L Contract students, I now even suggest to students that when this happens, they could help me out, by saying "Professor Pearson, I was in your 2012 class of Contracts -- Remember me!?" Thus, allowing me to at least pretend....
However, the science of facial recognition -- and perhaps memory as well -- is gaining deeper understanding with the help of a Stanford University study. A recent Stanford Report article explains the work of Stanford neuroscientists studying prosopagnosia, or facial blindness. Here is an excerpt:
Recognizing the faces of family and friends seems vital to social interaction. However, some individuals lack this essential skill. Those with a condition called face blindness, or prosopagnosia, can see eyes, lips and other facial features, yet they cannot remember the whole picture, a face. The condition touches one in 50 people, including actor Brad Pitt, neurologist Oliver Sacks, and primatologist Jane Goodall....
The brain's regions for face recognition and place recognition are located near to each other, under and behind the ears. For people with normal face and place recognition, the brain's wiring for each region is correlated with how good they are at face or place recognition, respectively. But in adults with face blindness, only the wiring of the face-recognition region is different from typical adults, and is coupled with their recognition deficit....
The brain's face- and place-recognition regions comprise grey-colored nerve cells. Extensions of those cells, or axons, range like wiring to other cells and regions of the brain to enable communication. Though face recognition is centered in particular regions of the brain, their complex function integrates perceptions such as depth, movement, shape and color, which take place in several parts of the brain. Those parts communicate with one another through axons. Thicker axons and more axons speed communication.
Each axon is sheathed with an outer layer of a white substance called myelin, similar in appearance to the way an electrical wire may be coated with an outer layer of insulation. Myelin gives the axons a white appearance, and so the axons with their sheaths are called white matter. The more myelin there is, the faster the communication. Myelin abnormalities distort or interrupt nerve impulses, as is seen in multiple sclerosis, a condition characterized by scarring of the myelin sheath. And myelin health might play a role in the development of Alzheimer's disease."
Hat tip to Stanford "mom" Laurel Terry for sharing this item.
Sunday, February 1, 2015
Part 2 of Greg O'Brien's NPR report on his personal journey with Alzheimer's is now available. He has a remarkable way of capturing the process with words -- a bit of irony:
"A diagnosis of Alzheimer's disease, says Greg O'Brien, doesn't mean your life is instantly over. 'There is this stereotype that ... you're in a nursing home and you're getting ready to die,' he told NPR. 'That's not true.'
'It's like a plug in a loose socket,' he says. 'Think of yourself, wherever you are in the country, and you're sitting down and you want to read a good book, and you're in a nice sofa chair next to a lamp at night. And the lamp starts to blink. You push the plug in and it blinks again and you push the plug in. ... Well, pretty soon you can't put the plug back in again because it's so loose, it won't stay there. And the lights go out forever.'"
Saturday, January 31, 2015
My colleague and great friend, Professor Laurel Terry, shared Paul Sullivan's Wealth Matters column from the New York Times, that uses the new movie Still Alice as a reminder of the importance of family conversation:
"For anyone who has ever watched a family member disappear into Alzheimer’s, Ms. Moore’s performance is gripping, particularly as her tricks to stall her decline inevitably fail and the later stages of the disease consume her. Yet the movie is also a great vessel to explore many of the financial issues that families need to address when someone is diagnosed with Alzheimer’s or any other disease that causes cognitive impairment."
The column continues with thoughts from financial professionals, who sometimes observe the early signs of a long-time client's decline:
"Thomas Mingone, managing partner at Capital Management Group of New York, said he had clients whose mental slide had been apparent to the advisers, accountants and lawyers in the room but not to the client. Since advisers are bound by a fiduciary duty to protect their clients’ privacy, Mr. Mingone said he can’t simply call up their children to let them know. With a client who seems to be slipping but lives alone and sees family members infrequently, Mr. Mingone said he suggests a family meeting, which allows him to connect with his client’s children. Other times, he said, just asking clients how they are doing brings the problem out.
'Sometimes when you bring this up with clients, it’s a relief to them,' he said."
For additional realities, including the problem of end-of-life decision-making and care choices, read "In Alzheimer's Cases, Financial Ruin and Abuse Are Always Lurking."
Sunday, January 25, 2015
NPR's All Things Considered began a series on January 24th that follows Greg O'Brien's journey with early-onset Alzheimer's, beginning with his diagnosis at age 59. There is lots of important stuff here, including the need for family dialogue and understanding. One dialogue is between the father and son, about why it was important for the son to serve as his dad's agent under a Power of Attorney.
Here's an excerpt from O'Brien's powerful account:
"How do you tell your kids that you got Alzheimer's? It sucks.
I had planned this family meeting, so all the kids were home and we're going to go out to dinner. I knew I had to talk beforehand.So I'm in the bathroom, you know I felt a little bit like Luca Brasi in The Godfather, practicing my speech. 'On the day of your daughter's wedding....'
I could hear, 'Daddy,where are you?' So I came out and I went over the fact that their great-grandfather, my grandfather, had died of Alzheimer's and my mother, which they knew. And now it's come for me...."
Thursday, January 22, 2015
If you have a loved one with dementia, particularly if you have watched him or her lose the power to communicate with words, perhaps you have wondered, what are they thinking? What are they hearing when you talk with them? Are they happy? Sad? Is confusion the dominant, or only, feeling?
You sometimes get hints of how they feel, including recognition they may feel profoundly trapped. I knew one man who, when he could not find the words, would shake his head and howl. I knew one woman who, when she was younger, used to have clever catch-phrases. By the time she was in her 80s, she had lost the ability to say a favorite phrase but she would say two words -- "Head up"-- over and over. She wanted you to help her complete the phrase. Her caregivers did not know that she had given hundreds of children horseback riding lessons, and misunderstood her words as a warning, perhaps motivated by paranoia. But, as one of her former students, when I heard her say "Head up" during my visit, I responded -- almost automatically -- with "Heels down." It is an equestrian's mantra for balanced riding. And she smiled as if we had just completed reciting the Gettysburg Address together.
With that background, I was captivated by a recent public radio broadcast, now available on an Invisibilia podcast, about the "Locked-In Man." Following an illness and a coma as a child, Martin Pistorius began to "awaken" during his teens, but for more than 10 additional years he was unable to talk, or even to signal to people caring for him -- or abusing him -- that he was "aware" of what was happening.
Imagine being trapped in front of reruns of "Barney" (television's purple dinosaur) day after day after day, for year after year. I know a senior care facility that seems to have the "King and I" playing on a television around the clock. Could Yul Brynner's singing be just as much torture as Barney's for someone who is unable to say "not again?"
Wednesday, January 21, 2015
A new acronym, VSED, is emerging in discussions of end-of-life decision making. It refers to Voluntarily Stopping Eating and Drinking. However, what happens when such a plan is combined with increasing dementia?
As addressed in Paula Span's thoughtful piece for The New York Times' "The New Old Age," it may not be possible to ensure such a plan will be honored, at least not under the existing law of most states. Consider the following example:
"Like many such documents, [Mr. Medalie's Advance Directive] declares that if he is terminally ill, he declines cardiopulmonary resuscitation, a ventilator and a feeding tube. But Mr. Medalie’s directive also specifies something more unusual: If he develops Alzheimer’s disease or another form of dementia, he refuses 'ordinary means of nutrition and hydration.' A retired lawyer with a proclivity for precision, he has listed 10 triggering conditions, including 'I cannot recognize my loved ones' and 'I cannot articulate coherent thoughts and sentences.'
If any three such disabilities persist for several weeks, he wants his health care proxy — his wife, Beth Lowd — to ensure that nobody tries to keep him alive by spoon-feeding or offering him liquids. VSED, short for 'voluntarily stopping eating and drinking,' is not unheard-of as an end-of-life strategy, typically used by older adults who hope to hasten their decline from terminal conditions. But now ethicists, lawyers and older adults themselves have begun a quiet debate about whether people who develop dementia can use VSED to end their lives by including such instructions in an advance directive...."
For more, continue reading "Complexities of Choosing End Game for Dementia." Thanks to Elder Law Attorney Morris Klein for sharing this good article.
Monday, January 19, 2015
If you were retiring, would you want marketers of insurance products and funeral services -- or similar products -- obtaining your name and address from your former employer? Pennsylvania's Right-to-Know Law could be permitting just such access to information on a large number of state retirees.
In a decision issued January 9, 2015, the Commonwealth Court of Pennsylvania, an intermediate court, ruled the Pennsylvania State Retirement System (SERS) failed to satisfy its burden to prove "a substantial and demonstrable risk" arising from a request for 15 years' worth of records containing the "names and addresses of all retirees" from the state. Therefore, the names and contact information of more than 1,000 retirees, or if deceased, the information on their beneficiaries, must be disclosed by SERS. And if SERS "failed" in carrying the burden of proving why this should not happen, as the opinion demonstrates, it was not for lack of trying.
The Court recognized an exception from disclosure for retired judges and law enforcement officers on the grounds of specific "personal safety and security" language tied to those positions, contained in Pennsylvania's Right-to-Know Law.
Friday, January 9, 2015
Criminal behavior in older adults, including theft, traffic violations, sexual advances, trespassing, and public urination, may be a sign of dementia, researchers say. There is a subgroup of people, especially older adults who are first-time offenders, who may have a degenerative brain disease underlying their criminal behavior, said Dr. Georges Naasan of the Memory and Aging Center and Department of Neurology at the University of California, San Francisco. He and his coauthors reviewed the medical records of 2,397 patients diagnosed with Alzheimer’s disease or other types of dementia between 1999 and 2012. They scanned patient notes for entries about criminal behavior using keywords like ‘arrest,’ ‘DUI,’ ‘shoplift’ and ‘violence’ and uncovered 204 patients, or 8.5 percent, who qualified. Their behaviors were more often an early sign of frontotemporal dementia (bvFTD) or primary progressive aphasia (PPA), a type of language-deteriorating dementia, than of Alzheimer’s disease.
Read more at Reuters.
Thursday, January 8, 2015
The Denver Post ran an article on Sunday January 4, 2015 about early detection of Alzheimer's. Alzheimer's disease researchers pursue early detection reports about the work researchers have done that has led the, according to one scientist to "the brink of understanding." Researchers at the U. of Colorado in Boulder have been working diligently, with a new drug trial and a proposal for "a federally funded research center..." The article quotes an expert from the Alzheimer's Association about how early detection is so important:
"There's broad recognition now that the brain changes that lead to Alzheimer's disease occur long before there are any symptoms," [Dr. Keith] Fargo said. "By the time changes in cognitive abilities are evident, you have lost a lot of brain cells, and much of what is going to happen with Alzheimer's disease has already happened."
Dr. Fargo goes on to note that it may take 10-20 years before it's actually found and by then, it's too late to undo the damage. Thus the race to find a way to diagnose Alzheimer's before the symptoms show up. The article discusses the work researchers are doing to figure out ways to detect the disease early on. These range from using PET scans to blood tests to "genetic profiling." The trial starting at U. of Colorado involves the "protein released in the brain of people with rheumatoid arthritis. They don't develop the disease." Another interesting area of research involves the sense of smell: those individuals who aren't good at "identifying smells are at high risk of Alzheimer's... [since the] cranial nerve that affects the olfactory sense is one of the first areas involved in brain degeneration."
This is one race we want the researchers to win-soon.
Monday, January 5, 2015
Health Care Decisions for the "Unbefriended" -- a Report from "Aging and Law" Program at 2015 AALS in D.C.
My thanks to Becky Morgan for her words of support regarding the task ahead of me as the incoming chair of the Aging and the Law Section of the American Associations of Law Schools (AALS). AND, more importantly, our thanks to Mark Bauer, from Stetson Law, the outgoing chair on Aging, and Thaddeus Pope, Hamline Law, the chair of the Law, Medicine and Healthcare Section, who worked together to present a great program.
The focus of the 2015 joint program was examination of how health care providers approach the question of medical decisions -- and not just end-of-life treatment decisions -- for a unique, but not rare, group of individuals. We were asked to consider whether current law and practice adequately serve those who have not expressed their views in advance (such as by a written "living will" or other care directive), have not appointed a surrogate decision maker (such as by naming an agent in a written directive, whether in the form of a Power of Attorney or specialized health-care directive), are not able personally to communicate with a doctor or care provider to give direction and consent to treatment, and for whom there is no family member or close individual recognized by formal law or informal practice as having decision-making authority. Sometime this individual is simply someone who has outlived her family and close friends.
The discussion was good, especially with the help of the 50-state legal review from the wonderful Erica Wood of the American Bar Association's Commission on Law and Aging, and key practical perspectives and experiences from Ellen Fox, M.D., who was Chief Officer, Ethics in Health Care, for the Department of Veterans Affairs for 15 years, and who now is the CEO for Integrated Ethics Consulting LLC.
David Orentlicher. J.D., M.D., and the co-director of the Center for Law and Health at Indiana University School of Law provided an intriguing examination of "clear and convincing evidence" standards as used in health-care decision making for "unbefriended" patients. Sharona Hoffman, from Case Western Reserve Law also added good food for thought, including talking about "precedent autonomy," which for me was a new label to consider. This latter concept resonated with me on a personal level, as for many years my father made it very clear how he did not want to live under certain circumstances if he developed certain disabling conditions, but who now seems to have quite a different view -- acceptance of life, perhaps --"with" dementia.
Great discussion, including wise observations from members of the audience about the number of years that society has struggled with these issues of treatment decisions for those who cannot express their personal wishes, and the incremental (and sometimes frustrating) nature of change.
I always hope to come away from AALS programs with new things to read and study, both for myself and my students. So, along that line, here are two takeaways:
- Ellen Fox is a co-author for "Ten Myths About Decision-Making Capacity," including the first "myth that decision-making capacity and competency are the same."
- A paper on "The Concept of Precedent Autonomy" by John K. Davis.