Monday, July 15, 2019
According to a recent story published in Modern Healthcare, Nursing home staffing levels often fall below CMS expectationsfocuses on a new study that "[n]ursing home staffing levels are often lower than what facilities report, which could compromise care quality, new research shows....Self-reported direct staffing time per resident was higher than the CMS' payroll-based metrics 70% of the time, according to a new study published in Health Affairs. Staffing levels were significantly lower during the weekends, particularly for registered nurses."
We know the importance of staffing as a quality measure and ensuring quality of care, so this study is very important. "Researchers compared facility-reported staffing and resident census data and annual inspection survey dates from the Certification and Survey Provider Enhanced Reports to the CMS' long-term care facility Staffing Payroll-Based Journal from 2017 to 2018. The payroll-based data offered a more granular look, showing how staffing evolves over time rather than relying on static point-in-time estimates that were subject to reporting bias and rarely audited...."
When comparing for-profit SNFs with NFP SNFS, the researchers found the for-profits "more likely to report higher staffing numbers ... and [s]taffing levels increased before and during the times of the annual surveys and dropped off after."
The use of payroll data to determine staffing levels has only been in effect a little over a year. The story focuses specifically just on staffing levels. A log-in is required to access the study.
Friday, July 12, 2019
Pew Research has a new Fact Tank, "On average, older adults spend over half their waking hours alone" which explains that "Americans ages 60 and older are alone for more than half of their daily measured time – which includes all waking hours except those spent engaged in personal activities such as grooming. All told, this amounts to about seven hours a day; and among those who live by themselves, alone time rises to over 10 hours a day, according to a new Pew Research Center analysis of Bureau of Labor Statistics data."
That seems like a lot, especially when you compare the "alone-time" for other generations to this one: "people in their 40s and 50s spend about 4 hours and 45 minutes alone, and those younger than 40 spend about three and a half hours a day alone, on average. Moreover, 14% of older Americans report spending all their daily measured time alone, compared with 8% of people younger than 60."
Alone time isn't a bad thing-just ask any introvert-but even too much of a good thing can be ... too much. Alone time "can be a measure [used for] social isolation" which can have a correlation to "negative health outcomes among older adults. Medical experts suspect that lifestyle factors may explain some of this association – for instance, someone who is socially isolated may have less cognitive stimulation and more difficulty staying active or taking their medications. In some cases, social isolation may mean there is no one on hand to help in case of a medical emergency."Living arrangements also play a role in how much time a person is alone. "More than a third (37%) of older adults who live alone report spending all their measured time alone. Among those who live with someone other than a spouse, the average amount of alone time a day is seven and a half hours."
Thursday, July 11, 2019
I've blogged a number of times on the variety of issues regarding caregivers and caregiving. A recent article in the New York Times presents an interesting perspective. At 75, Taking Care of Mom, 99: We Did Not Think She Would LiveThis Long discusses what the article describes as
“a growing phenomenon: Children in their 60s and 70s who are spending their retirement years caring for parents who are in their 90s and beyond.”
The article quotes one expert who describes this as “aging together” and this parental longevity has forced the caregiver child to redefine his or her retirement plans. The article recommends ways for caregivers to take care of themselves and manage stress and discusses the importance of doing a cost-analysis “[t]o figure out what’s financially doable, it may help to seek professional advice. An accountant will calculate tax breaks for home care and other services. Local senior programs could offer guidance on free and reduced-cost programs, including counseling for burned-out caregivers.”
Thanks to my colleague and dear friend, Professor Mark Bauer, for sending me the link to this article.
Wednesday, July 10, 2019
Ugh, this article in the Washington Post covers a serious and worrisome topic. Hospices go unpunished for reported maggots and uncontrolled pain, watchdog finds reports on a recently released HHS Office of Inspector General report, 2019: Vulnerabilities in Hospice Care.
The OIG report is actually two reports "which found that from 2012 through 2016, the majority of U.S. hospices that participated in Medicare had one or more deficiencies in the quality of care they provided to their patients. Some Medicare beneficiaries were seriously harmed when hospices provided poor care or failed to take action in cases of abuse. OIG made several recommendations in both reports to strengthen safeguards to protect Medicare hospice beneficiaries from harm and to ensure hospices are held accountable for deficiencies in their programs."
The first report, Hospice Deficiencies Pose Risks to Medicare Beneficiaries, 07-03-2019 | Report (OEI-02-17-00020), found that
[t]he most common types of deficiencies involve poor care planning, mismanagement of aide services, and inadequate assessments of beneficiaries. In addition to these, hospices had other deficiencies that also posed risks to beneficiaries. These failings-such as improperly vetting staff and inadequate quality control-can jeopardize beneficiaries' safety and lead to poor care. In addition, one-third of all hospices that provided care to Medicare beneficiaries had complaints filed against them. Over 300 hospices had at least one serious deficiency or at least one substantiated severe complaint in 2016, which we considered to be poor performers. These hospices represent 18 percent of all hospices surveyed nation-wide in 2016. Most poor performers had other deficiencies or substantiated complaints in the 5-year period. Some poor performers had a history of serious deficiencies.
The full report is available here.
[s]ome instances of harm resulted from hospices providing poor care to beneficiaries and some resulted from abuse by caregivers or others and the hospice failing to take action. These cases reveal vulnerabilities in CMS's efforts to prevent and address harm. These vulnerabilities include insufficient reporting requirements for hospices, limited reporting requirements for surveyors, and barriers that beneficiaries and caregivers face in making complaints. Also, these hospices did not face serious consequences for the harm described in this report. Specifically, surveyors did not always cite immediate jeopardy in cases of significant beneficiary harm and hospices' plans of correction are not designed to address underlying issues. In addition, CMS cannot impose penalties, other than termination, to hold hospices accountable for harming beneficiaries.
The second full report is available here. In addition there is a slide show available on YouTube, a one page flyer available here, a one-page graphic of the top issues available here, a flyer on beneficiary rights available here and more.
Monday, July 8, 2019
Professor Tara Sklar emailed me to let me know of the publication of two new articles. Her first, Preparing to Age in Place: The Role of Medicaid Waivers in Elder Abuse Prevention appears in 28 Annals of Health Law 195 (2019) and is also available on SSRN.
Here is the abstract
Over the last three decades, there has been a steady movement to increase access to aging in place as the preferred long-term care option across the country. Medicaid has largely led this effort through expansion of state waivers that provide Home and Community-Based Services (HCBS) as an alternative to nursing home care. HCBS include the provision of basic health services, personal care, and assistance with household tasks. At the time of this writing, seven states have explicitly tailored their waivers to support aging in place by offering HCBS solely for older adults, individuals aged 65 and over. However, there is growing concern about aging in place contributing to greater risk for social isolation, and with that increased exposure to elder abuse. Abuse, neglect, and unmet need are highly visible in an institutional setting and can be largely invisible in the home without preventative measures to safeguard against maltreatment. This article examines the seven states with Medicaid HCBS waivers that target older adults, over a 36-year period, starting with the first state in 1982 to 2018. We conducted qualitative analysis with each waiver to explore the presence of safeguards that address risk factors associated with elder abuse. We found three broad categories in caregiver selection, quality assurance, and the complaints process where there are notable variations. Drawing on these findings, we outline features where Medicaid HCBS waivers have the potential to mitigate risk of elder abuse to further support successful aging in place.
The second article, Elderly Gun Ownership and the Wave of State Red Flag Laws: An Unintended Consequence That Could Help Many will be published in the Elder Law Journal. It is currently available on SSRN here.
Here is the abstract
There is rising concern among health professionals and in legal circles to address gun ownership for older adults who display signs of cognitive decline, including dementia. However, elderly gun ownership remains underexamined, partly because incidents of gun violence among the elderly tend to occur in domestic settings and are much less visible than shootings in public areas. In contrast, there is widespread attention to curb mass gun violence through state legislation. Specifically, red flag laws, also known as Extreme Risk Protection Orders, have doubled in 2018 with thirteen states enacting red flag laws and over thirty states having introduced or planning to introduce this legislation. Although red flag laws were not intended to address elderly gun ownership, they uniquely apply where other gun control laws fall short, as red flag laws provide the legal process to temporarily remove access to guns for persons believed to be at an elevated risk of harming themselves or others.
This Article surveys the thirteen states that have enacted red flag laws and analyzes key legislative elements across these states. The state laws have notable variations, including authorized persons who can petition a court for a protection order, standard of proof requirements, and the length of time an order is in effect. These variations have implications for elderly gun owners and their families, particularly in how they relate to the climbing rates of cognitive decline, suicide in late life, and elder abuse. The current wave of red flag laws across the country offer an opportunity to provide greater awareness around elderly gun ownership and prevent crises from becoming tragedies.
I was particularly interested in this second piece, because we recently offered a webinar at Stetson for elder law attorneys on dementia and gun ownership. Information about the webinar and how to order an audio download are available here.
Congrats Professor Sklar and thanks for letting us know about your articles!
July 8, 2019 in Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Federal Statutes/Regulations, Health Care/Long Term Care, Medicaid, Programs/CLEs, State Statutes/Regulations | Permalink | Comments (0)
Friday, July 5, 2019
That was the question posed in a recent article published in Cleveland.Com. Amid growth of assisted living, some renew calls for federal oversight opens with an examiniation of hte requirements to be employed as an aide in ALFs.
Just read this to get a sense of the issues illustrated in this article:
The number of assisted-living centers in the United States has jumped more than 150 percent in the past 20 years, fueled by an increase of residents with cognitive issues, a willingness of facilities to take more frail patients, and families who wish to avoid nursing homes.
But while the centers’ clientele has changed dramatically, there have been few efforts to systemically re-evaluate staffing or training guidelines necessary to properly serve residents. This has led some advoctates of the elderly to renew the call for federal oversight of the facilities, much like nursing homes.
For instance, nearly half of the nation’s states lack extensive training programs for the facilities’ employees, with most requiring some form of a job orientation and less than a dozen hours of instruction.
When it comes to staffing, the differences are even more stark. Thirty-eight states leave the amount of personnel needed to care for residents up to individual facility owners.
These variations fuel the position that federal oversight is needed, mainly because it would provide consistency. But there are opponents of the idea who think it will make ALF oversight more bureaucratic and expensive. With Medicaid waivers covering the cost of ALFs in some situations, the argument for federal oversight gains strength. "But because Medicaid’s role is increasing in assisted living, advocates for the elderly say the U.S. Centers for Medicaid and Medicare Services, which oversees nursing homes, should also monitor assisted-living facilities."
The article discusses efforts at the state level of ensure quality of care and offers argument both in favor of and against involvement of the feds.
What do you think?
Wednesday, July 3, 2019
In May, AARP ran a story about research identifying a new dementia that is not Alzheimer's. Is It Alzheimer's ... or LATE? explains about recent results into research of cases that although thought to be Alzheimer's are not. "[A] report published in the medical journal Brain reveals that in cases involving people older than 80, up to 50 percent may, in fact, be caused by a newly identified form of dementia. It's called LATE, which is short for limbic-predominant age-related TDP-43 encephalopathy....The news, published last month, is being heralded as a potential breakthrough, as identifying a new type of dementia could be critical for targeting research — for both LATE and Alzheimer's. In fact, the report included recommended research guidelines as well as diagnostic criteria for LATE." The disease can mimic some aspects of Alzheimer's, the story explains, and it can only be identified in an autopsy.
Here is the abstract from the study:
We describe a recently recognized disease entity, limbic-predominant age-related TDP-43 encephalopathy (LATE). LATE neuropathological change (LATE-NC) is defined by a stereotypical TDP-43 proteinopathy in older adults, with or without coexisting hippocampal sclerosis pathology. LATE-NC is a common TDP-43 proteinopathy, associated with an amnestic dementia syndrome that mimicked Alzheimer’s-type dementia in retrospective autopsy studies. LATE is distinguished from frontotemporal lobar degeneration with TDP-43 pathology based on its epidemiology (LATE generally affects older subjects), and relatively restricted neuroanatomical distribution of TDP-43 proteinopathy. In community-based autopsy cohorts, ∼25% of brains had sufficient burden of LATE-NC to be associated with discernible cognitive impairment. Many subjects with LATE-NC have comorbid brain pathologies, often including amyloid-β plaques and tauopathy. Given that the ‘oldest-old’ are at greatest risk for LATE-NC, and subjects of advanced age constitute a rapidly growing demographic group in many countries, LATE has an expanding but under-recognized impact on public health. For these reasons, a working group was convened to develop diagnostic criteria for LATE, aiming both to stimulate research and to promote awareness of this pathway to dementia. We report consensus-based recommendations including guidelines for diagnosis and staging of LATE-NC. For routine autopsy workup of LATE-NC, an anatomically-based preliminary staging scheme is proposed with TDP-43 immunohistochemistry on tissue from three brain areas, reflecting a hierarchical pattern of brain involvement: amygdala, hippocampus, and middle frontal gyrus. LATE-NC appears to affect the medial temporal lobe structures preferentially, but other areas also are impacted. Neuroimaging studies demonstrated that subjects with LATE-NC also had atrophy in the medial temporal lobes, frontal cortex, and other brain regions. Genetic studies have thus far indicated five genes with risk alleles for LATE-NC: GRN, TMEM106B, ABCC9, KCNMB2, and APOE. The discovery of these genetic risk variants indicate that LATE shares pathogenetic mechanisms with both frontotemporal lobar degeneration and Alzheimer’s disease, but also suggests disease-specific underlying mechanisms. Large gaps remain in our understanding of LATE. For advances in prevention, diagnosis, and treatment, there is an urgent need for research focused on LATE, including in vitro and animal models. An obstacle to clinical progress is lack of diagnostic tools, such as biofluid or neuroimaging biomarkers, for ante-mortem detection of LATE. Development of a disease biomarker would augment observational studies seeking to further define the risk factors, natural history, and clinical features of LATE, as well as eventual subject recruitment for targeted therapies in clinical trials.
The full article is available here as a pdf.
Tuesday, July 2, 2019
Last week Bloomberg Law ran a story about a new scam. Scammers Target Seniors With DNA Tests, Health Agency Says explains that the "free DNA test" is being sent to elders. "Companies offering the tests use the information gathered to steal identities or bill Medicare for unnecessary tests, the U.S. Department of Health and Human Services Office of Inspector General said in an agency fraud alert. The fraudsters are targeting victims through telemarketing, booths at public events and door-to-door visits." The fraud alert from HHS'Inspector General, Fraud Alert: Genetic Testing Scam offers these suggestions for elders:
If a genetic testing kit is mailed to you, don't accept it unless it was ordered by your physician. Refuse the delivery or return it to the sender. Keep a record of the sender's name and the date you returned the items.
Be suspicious of anyone who offers you free genetic testing and then requests your Medicare number. If your personal information is compromised, it may be used in other fraud schemes.
A physician that you know and trust should approve any requests for genetic testing.
Medicare beneficiaries should be cautious of unsolicited requests for their Medicare numbers. If anyone other than your physician's office requests your Medicare information, do not provide it.
If you suspect Medicare fraud, contact the HHS OIG Hotline.Always remember that very little in life is free and if an offer sounds to good to be true, it isn't true.
Friday, June 28, 2019
The Office of Inspector General for Health & Human Services issued a report this month, Incidents of Potential Abuse and Neglect at Skilled Nursing Facilities Were Not Always Reported and Investigated.
Here's a summary of their findings
We determined that an estimated one in five high-risk hospital ER Medicare claims for treatment provided in calendar year 2016werethe result of potential abuse or neglect, including injury of unknown source, of beneficiaries residing in a SNF.We determined that SNFs failed to report many of these incidents to the Survey Agencies in accordance with applicable Federal requirements. We also determined that several Survey Agencies failed to report some findings of substantiated abuse to local law enforcement. Lastly, we determined that CMS does not require all incidents of potential abuse or neglect and related referrals made to law enforcement and other agencies to be recorded and tracked in the Automated Survey Processing Environment Complaints/Incidents Tracking System. Preventing, detecting, and combating elder abuse requires CMS, Survey Agencies, and SNFs to meet their responsibilities.
OIG's recommendations include
- work with the Survey Agencies to improve training for staff of SNFs on how to identify and report incidents of potential abuse or neglect of Medicare beneficiaries,
- clarify guidance to clearly define and provide examples of incidents of potential abuse or neglect,
- require the Survey Agencies to record and track all incidents of potential abuse or neglect in SNFs and referrals made to local law enforcement and other agencies, and
- monitor the Survey Agencies’ reporting of findings of substantiated abuse to local law enforcement.
The OIG full report is available here.
June 28, 2019 in Consumer Information, Crimes, Current Affairs, Elder Abuse/Guardianship/Conservatorship, Federal Cases, Federal Statutes/Regulations, Health Care/Long Term Care, Other | Permalink | Comments (0)
Thursday, June 27, 2019
Health & Human Services in a press release, explains that HHS Announces Final Conscience Rule Protecting Health Care Entities and Individuals."that protects individuals and health care entities from discrimination on the basis of their exercise of conscience in HHS-funded programs. Just as OCR enforces other civil rights, the rule implements full and robust enforcement of approximately 25 provisions passed by Congress protecting longstanding conscience rights in healthcare. "
Wednesday, June 26, 2019
A colleague and dear friend of mine is doing amazing work to combat climate change. I have on several occasions told him he should look at the impact of climate change on elders but never have I thought about the role of elders in contributing to climate change.... until now. Last month the New York Times ran an article, Older People Are Contributing to Climate Change, and Suffering From It.
Not only have elders seen climate change happening, according to the article, "Older Americans ... are significant contributors to climate change. A just-published study has found that residential energy consumption rises as a resident’s age increases." The article examines the why of this and although "[t]he study could not provide explanations, but“there might be more need for air-conditioning,” ... [o]r older people may not be able to maintain their homes as well to conserve energy....." Living in one of those southern states where air conditioning is a must and on extremely hot days we get warnings about certain folks needing to stay in air conditioning, I can say the researcher was right on that reason.
The article notes that there is a vicious cycle occurring-"There will be more warm days in most areas because of climate change... [and] more energy use by the older group... [with] the population aging, there will be more people in that age group.'"
The article goes on to discuss how older people are disproportionately affected by climate extremes and disasters. Fighting climate change should be one of our top priorities because we are all affected by it-but clearly our older folks are affected more than most.
Thank you Roy for all of your work.
Tuesday, June 25, 2019
That's the age-old (pun intended) question, isn't it? I know my students perceive me as old, but I know in my mind I'm not as old as my chronological age would denote. So the Washington Post tackled the "how old is old?" question in a recent story, An ageless question: When is someone ‘old’?
Typically, people decide who is “old” based on how many years someone has already lived, not how many more years they can expect to live, or even how physically or cognitively healthy they are. I will soon turn 62. What does that actually tell you? Not very much, which is why, like many of my sexagenarian friends, I’m apt to claim, “Yes, age is just a number.”
So what does “old” really mean these days?
All of us who teach elder law know that asking how old is old is valid and important. It impacts eligibility for programs and benefits, for example. It's also important for the purpose of policymakers who have to make plans for aging populations, the article explains. In the U.S. we still see the use of 60 or 65 as a threshold to "old."
The United Nations historically has defined older persons as people 60 years or over (sometimes 65). It didn’t matter whether you lived in the United States, China or Senegal, even though life expectancy is drastically different in each of those countries. Nor did it depend on an individual’s functional or cognitive abilities, which can also be widely divergent. Everyone became old at 60. It was as though you walked through a door at midnight on the last day of 59, emerging a completely different person the next morning: an old person.
Two experts quoted in the article, demographers, discuss the different between chronological age and prospective age, that is "'chronological age 'tells us how long we’ve lived so far. In contrast, prospective age is concerned about the future. Everyone with the same prospective age has the same expected remaining years of life.'” One of them is quoted as saying you are old when you have a "specific life expectancy is 15 years or less. That .. is when most people will start to exhibit the signs of aging, which is to say when quality of life takes a turn for the worse." By this measure I'm not old yet but by golly I'm close.
The expert when on to elaborate
[For] ... folks in the United States... When are we considered old? For women, the old age threshold is about 73; for men, 70.... [The expert] layers his concept of prospective age with another quality, which he calls “characteristic aging.”... “It depends upon the characteristics of people, in which sense they are old,” he says. “Are they cognitively old? Are they physically old? Are they old in terms of their disabilities? It depends.”
Old is not a one-size fits all and not only are there variations within the U.S. there are by country. The article is really fascinating-read it and figure out how long before you are "old."
Thanks to Professor Naomi Cahn for sending the article.
Friday, June 21, 2019
Kaiser Health News ran an interesting story that doctors aren't always the best at breaking bad news. Never Say ‘Die’: Why So Many Doctors Won’t Break Bad News relates the experiences of one doctor who as a patient, found his doctor unable to give him his terminal diagnosis. With the time he has left, he is teaching med students on how to have the conversation.
Robust research shows that doctors are notoriously bad at delivering life-altering news, said Dr. Anthony Back, an oncologist and palliative care expert at the University of Washington in Seattle....
Up to three-quarters of all patients with serious illness receive news in what researchers call a “suboptimal way,” Back estimated.... “’Suboptimal’ is the term that is least offensive to practicing doctors,” he added.
This lack of information seems puzzling given that patients need info in order to make an informed decision. Why is this happening? For one, "many doctors, especially those who treat cancer and other challenging diseases,'“death is viewed as a failure,'” said one expert quoted in the article. The article covers the needed skills, how they might be taught, and what is being done to help with this issue.
Thursday, June 20, 2019
Maine has paased a law legalizing medical aid in dying. Maine Becomes 8th State to Legalize Assisted Suicide notes that the governor signed the law last week, The votes in both the Maine House and Senate were close. The Maine law is similar to that in effect in several other states.
The Maine Governor "issued an executive order ... calling for the state to swiftly put the law’s protections into place and analyze the law’s impact." As she explained
For all of these concerns as well however, I have also issued Executive Order Number Nine, which requires the Department of Health and Human Services to engage in Emergency Substantive Rulemaking within the next few months.
The broad purposes of this Executive Order will be to provide a high level of protection for those in care and those who shall be in care; to track trends in the utilization of the law; to pursue our responsibility for end of life care; and to avoid the moral and social consequences of a law that in some way might facilitate the taking of life without the full authority of the individual.
Tuesday, June 18, 2019
Kaiser Health News recently ran a story, Payroll Tax Is One State’s Bold Solution To Help Seniors Age At Home. According to the article,
[T]wo states — Washington and Hawaii — are experimenting with taxpayer-funded plans to help older residents remain in their homes.
Washington state’s ambitious plan, signed into law in May, will employ a new 0.58% payroll tax (or “premium,” as policymakers prefer to call it) to fund a $36,500 benefit for individuals to pay for home health care, as well as other services — from installing grab bars in the shower to respite care for family caregivers.
Hawaii’s Kupuna Caregivers Program, which was initiated in 2017, is also publicly funded, but state budget allocations limit enrollment and benefits. It provides up to $210 a week for services when family caregivers work outside the home at least 30 hours a week.
As the article notes, there is a growing need for caregivers.
The number of Americans 65 and older will double to 98 million by 2050, and studies show few have the financial resources to pay for care in old age. More than half of adults 65 and up will require long-term assistance at some point with everyday activities, for an average duration of about two years, according to a 2015 study by the Department of Health and Human Services. Finding a way to help people stay in their homes — and not move to nursing homes — can keep them happier and save them and the state money. Medicaid programs help cover the costs of 62% of nursing home residents.
The article notes that other states are watching the results of these two innovative programs, but it will take some time to see the results. In Washington state, "[t]he state will begin collecting the payroll tax in 2022, and starting in 2025 residents can collect benefits if they have paid into the system for at least three of the previous six years or five consecutive years within a decade. The details will be set over the next few years, but to qualify for a benefit of up to $100 a day, which will be adjusted for inflation, a person must show they need help with at least three activities of daily living." The program is projected to be a money-saver, to the tune of "$3.9 billion in state Medicaid costs by 2052."
Other states are exploring other solutions:
Minnesota is considering allowing people to convert life insurance plans to long-term care insurance.
Maine voters rejected a ballot proposal to provide free long-term care to residents, funded by a 3.8% income tax on residents making more than $128,400 a year. Instead, the state government is educating people about the need to buy long-term care insurance, including an awareness campaign in high schools.
The California Aging and Disability Alliance, an advocacy group, is considering a ballot initiative for a state program to provide long-term services and support.... Michigan and Illinois are also studying proposals.
New York lawmakers have debated a graduated income tax to pay for comprehensive long-term care for its citizens. The Assembly has passed such a bill repeatedly, but the state’s Senate has refused to approve it.
Friday, June 14, 2019
Society gives short shrift to older age. This distinct phase of life doesn’t get the same attention that’s devoted to childhood. And the special characteristics of people in their 60s, 70s, 80s and beyond are poorly understood.
Medicine reflects this narrow-mindedness. In medical school, physicians learn that people in the prime of life are “normal” and scant time is spent studying aging. In practice, doctors too often fail to appreciate older adults’ unique needs or to tailor treatments appropriately.
The story focuses on a new book by a doctor, “Elderhood" which is "an in-depth, unusually frank exploration of biases that distort society’s view of old age and that shape dysfunctional health policies and medical practices." The rest of the article is a Q&A interview with the author focusing on her idea of "elderhood", how she sees her concepts working, and ageism. Using an anecdote, the author offers it as an example of "ageism: dismissing an older person’s concerns simply because the person is old. It happens all the time." Here is another example the author offers
Recently, a distressed geriatrician colleague told me a story about grand rounds at a major medical center where the case of a very complex older patient brought in from a nursing home was presented. [Grand rounds are meetings where doctors discuss interesting or difficult cases.]
When it was time for comments, one of the leaders of the medical service stood up and said, “I have a solution to this case. We just need to have nursing homes be 100 miles away from our hospitals.” And the crowd laughed.
The interview does have some optimistic insights, including "the age-friendly health system movement, which is unquestionably a step in the right direction. And a whole host of startups that could make various types of care more convenient and that could, if they succeed, end up benefiting older people."
Thursday, June 13, 2019
The Center for Medicare Advocacy (CMA-full disclosure, I'm on their board) has been litigating with CMS on the observation status issue. The latest litigation on the observation status, Alexander v. Azar, has a new opinion decided on June 4, 2019. On a motion for clarification and reconsideration filed by CMS, as well as a motion to seal, the Court in the June 4 order grants in part and denies in part the motion to seal and denies the motion for reconsideration and clarification.
Stay tuned. This case is going to trial in the fall!
Wednesday, June 12, 2019
GAO has issued a new report, Disaster Assistance: FEMA Action Needed to Better Support Individuals Who Are Older or Have Disabilities. According to the GAO findings,
A range of officials from entities that partner with the Federal Emergency Management Agency (FEMA)—including states, territories, localities, and nonprofits)—reported challenges providing assistance to individuals who are older or have disabilities following the 2017 hurricanes. For example, officials said that many of these individuals required specialized assistance obtaining food, water, medicine, and oxygen, but aid was sometimes difficult to provide.Officials in Puerto Rico and the U.S. Virgin Islands cited particular difficultiesproviding this assistance due to damaged roads and communication systems, as well as a lack of documentation of nursing home locations. Based on GAO’s analysis of FEMA data and interviews with FEMA officials and stakeholders, aspects of the process to apply for assistance from FEMA after the 2017 hurricanes were challenging for older individuals and those with disabilities. According to stakeholders and FEMA officials, disability-related questions in the registration materials are confusing and easily misinterpreted. For example, FEMA’s registration process does not include an initial question that directly asks individuals if they have a disability or if they would like to request an accommodation for completing the application process (see figure below). While FEMA has made efforts to help registrants interpret the questions, it has not yet changed the language of the questions to improve clarity. As a result, individuals with disabilities may not have requested accommodations or reported having disabilities, which may have hindered FEMA’s ability to identify and assist them.. . .
FEMA did not establish objectives before implementing its new approach to disability integration, which includes adding new disability integration staff in the regions and decreasing the number of disability integration advisors deployed to disaster sites. Without documented objectives for the new approach, regional leadership across the nation may implement changes inconsistently. In addition, the new approach shifts the responsibility for directly assisting individuals with disabilities to all FEMA staff. FEMA has taken some initial steps to provide training on the changes; however, it has not established a plan for delivering comprehensive disability-related training to all staff who will be directly interacting with individuals with disabilities. Developing a plan to train all staff would better position FEMA to achieve its intended goals and better equip deployed staff to identify and assist these survivors.
The full report is available here as a pdf.
Tuesday, June 11, 2019
Maine may be the latest state to pass medical aid-in-dying according to the Washington Post. The article explains the Maine House passed the bill by a one vote margin, Maine could allow terminally ill to get life-ending meds. Two days later, CNN reported that the bill has been sent to the Maine governor, Maine legislature sends bill effectively legalizing assisted suicide to governor. "The legislation, called the "Maine Death with Dignity Act," would allow mentally-competent patients over the age of 18 'to make a request for medication prescribed for the purpose of ending the person's life.'" The vote in the Maine Senate was also close, but not quite as close as in the Maine House, passing the Senate 19-16. The article notes that the bill "states that it does not legalize medically-assisted suicide, though if enacted, it would effectively do so."
Monday, June 10, 2019
The Hastings Center has announced a new and very important research project. Dementia and the Ethics of Choosing When to Die will focus on basic issues surrounding an individual's ability to exercise end of life choices when suffering from dementia. As the announcement explains
As the American population ages and dementia is on the rise, The Hastings Center is embarking on pathbreaking research to explore foundational questions associated with the dementia trajectory and the concerns of persons facing this terminal condition. This new research is made possible by a major grant to The Hastings Center from The Robert W. Wilson Charitable Trust as part of its visionary support for the Center’s research and public engagement on ethical challenges facing aging societies.
During the dementia trajectory, a person experiences progressive impairment of cognitive abilities – including memory, problem-solving, and language – as well as changes in behavior and physiological functions. As cognition deteriorates, a person with dementia will need daily assistance and eventually total care, often in an institutional setting, for several years before physical deterioration progresses to death from pneumonia or another condition associated with severe dementia. There are no effective treatments to cure or halt the progression of dementia. Alzheimer’s disease, the most common form, is the sixth leading cause of death in the U.S. Vascular dementia, the second most common form, may develop following stroke.
In 2018, 5.7 million Americans were living with dementia. An estimated 12 million others will be at high risk for developing dementia over the next 30 years as the baby boom generation lives into their 80s and 90s.
In the U.S., the basic legal right to be free of unwanted treatment is long established. People with decision-making capacity have the right to forgo life-sustaining treatment they do not want. People who lack decision-making capacity have the same right through the use of an advance directive or a surrogate decision-maker. However, this longstanding legal framework and ethical consensus does not fully reflect the situation of a person facing dementia if this person has no medical treatments to refuse. Also, the timeframe in which a terminally ill person with decision-making capacity can request and use medical aid-in-dying (MAID), now legal in nine U.S. jurisdictions, does not correspond to the dementia trajectory.
Through literature review and workshops, a Hastings Center work group will conduct an ethical analysis of end-of-life choices in the context of dementia, identifying areas where further research or policymaking is needed. In exploring these emerging issues, the work group will also consider how the field of bioethics should contribute to research, policy solutions, and public understanding to improve the experiences of living with dementia and caring for people with the condition. Products will include a special report, to be published in 2021.
“Population aging raises profound questions about how a society values the experiences of aging and caregiving,” says Berlinger. A separate Wilson Trust grant will build on a recent Hastings Center special report to support events and publications on how policymakers, practitioners, and the public can promote inclusion and equity for older adults and caregivers. Learn more about the dementia project and the aging societies project.