Monday, March 13, 2017
We don't know what the future holds for us, especially in our final years, but we can bet that we may be faced with some health care issues. Wouldn't it be great to have a guidebook for the final years? Well now you can. According to an article in Kaiser Health News, A Playbook For Managing Problems In The Last Chapter Of Your Life, there is "a unique website, www.planyourlifespan.org, which helps older adults plan for predictable problems during what Lindquist calls the “last quarter of life” — roughly, from age 75 on...“Many people plan for retirement,” the energetic physician explained in her office close to Lake Michigan. “They complete a will, assign powers of attorney, pick out a funeral home, and they think they’re done.”...What doesn’t get addressed is how older adults will continue living at home if health-related concerns compromise their independence." The focus isn't on end of life planning, according to the article, it's the time before. "Investigators wanted to know which events might make it difficult for people to remain at home. Seniors named five: being hospitalized, falling, developing dementia, having a spouse fall ill or die, and not being able to keep up their homes."
The result of the work is an interactive website that deals with issues such as falls, hospitalization, dementia, finances and conversations. The website offers that "Plan Your Lifespan will help you learn valuable information and provide you with an easy-to-use tool that you can fill in with your plans, make updates as needed, and easily share it with family and friends." Try it!
Wednesday, March 8, 2017
When older adults lack the capacity to make important health care decisions for themselves and have nothing in writing naming a person to make decisions for them, how can the right health care decisions be made in clinical settings? Over the past 40 years, nearly every state has passed statutes on health care decision-making. The laws vary from state-to-state, from authorizing living wills or powers of attorney for health care to defining the conditions when withholding or withdrawing life sustaining care is permitted for patients who lack capacity. Despite years of legal guidance, questions remain regarding the statutory applicability in clinical practice. In 2016, the American Bar Association Commission on Law and Aging (ABA COLA) initiated a national survey to explore health care clinicians’ perspectives on questions regarding capacity and decision-making. Findings explore instances when the law and clinical practice clearly align, when there are consultation differences between lawyers and clinical providers, and outline the areas that still present the greatest challenges for health care decision making in clinical settings.
In this webinar, David Godfrey, Senior Attorney to the ABA COLA, will detail the survey findings and implications for the health and aging network working with older adults with diminished capacity. The webinar will be accompanied by an Issue Brief that highlights the survey findings and provides recommendations for the field.
To register for this free webinar, click here.
Tuesday, March 7, 2017
From the Washington Post, an especially moving account written by former White House Communications Director Jennifer Palmieri about her sister, who died at age 58 following some ten years with "early onset" Alzheimer's:
Every day, more Americans receive the devastating news that someone in their family has this affliction. For now, there is not a lot of hope for recovery. It can make you envious of cancer patients; their families get to have hope. Having come through this experience with my sister, I am afraid that I can’t offer these new Alzheimer’s families hope for a recovery. But I do hope that by relaying the story of my sister’s journey, I can offer them some peace.
My sister Dana was brilliant, beautiful, full of positive energy, a force of nature. She was not an easy person. She was driven and successful, and, as the disease progressed unbeknown to all of us, it became harder to connect with her. Ironically, that began to change once she got the diagnosis.
When she called each of us with the news, she already had it all figured out. We were all to understand that, really, she saw the diagnosis as a blessing. It was going to allow her to retire early. It would motivate our family to spend time together we would not have otherwise done. It would shorten her life, but she would make sure the days she had left were of the highest quality.
The thoughtful piece can help all of us as we and our family members tackle challenges. For more, read The Blessings Inside my Sister's Alzheimer's Disease.
Tuesday, February 28, 2017
Paula Span, the thoughtful columnist on aging issues from the New York Times, offers "Gorsuch Staunchly Opposes "Aid-in-Dying." Does It Matter?" The article suggests that the "real" battle over aid-in-dying will be in state courts, not the Supreme Court.
I'm in the middle of reading Judge Gorsuch's 2006 book, The Future of Assisted Suicide and Euthanasia. There are many things to say about this book, not the least of which is the impressive display of the Judge's careful sorting of facts, legal history and legal theory to analyze the various advocacy approaches to end-of-life decisions, with or without the assistance of third-parties.
With respect to what might reach the Supreme Court Court, he writes (at page 220 of the paperback edition):
The [Supreme Court's] preference for state legislative experimentation in Gonzales [v. Oregon] seems, at the end of the day, to leave the state of the assisted suicide debate more or less where the Court found it, with the states free to resolve the question for themselves. Even so, it raises interesting questions for at least two future sorts of cases one might expect to emerge in the not-too-distant future. The first sort of cases are "as applied" challenges asserting a constitutional right to assist suicide or euthanasia limited to some particular group, such as the terminally ill or perhaps those suffering grave physical (or maybe even psychological) pain....
The second sort of cases involve those like Lee v. Oregon..., asserting that laws allowing assisted suicide violate the equal protection guarantee...."
While most of the book is a meticulous analysis of law and policy, in the end he also seems to signal a personal concern, writing "Is it possible that the Journal of Clinical Oncology study is right and the impulse for assistance in suicide, like the impulse for old-fashioned suicide, might more often than not be the result of an often readily treatable condition?"
My thanks to New York attorney, now Florida resident, Karen Miller for pointing us to the NYT article.
February 28, 2017 in Advance Directives/End-of-Life, Consumer Information, Crimes, Dementia/Alzheimer’s, Discrimination, Elder Abuse/Guardianship/Conservatorship, Ethical Issues, Federal Cases, Health Care/Long Term Care, Religion, Science, State Cases, State Statutes/Regulations | Permalink | Comments (0)
Thursday, February 23, 2017
Florida State University's Center for Innovative Collaboration in Medicine & Law and Big Bend Hospice have announced that they are co-sponsoring a National Healthcare Decisions Day on Thursday April 20, 2017 from 5-7:30 p.m. The event includes a resource fair, presentations, q & a and a copy of the 5 Wishes document.
National Health Care Decisions Day is actually a week, rather than a day, and it "aims to help people across the U.S. understand the value of advance healthcare planning. For 2017, NHDD will be a week long event, from April 16 to 22." More information about the health care decisions day, including how to get involved, is available here.
Tuesday, February 21, 2017
As we had blogged previously, D.C. city council had passed an aid-in-dying law that was signed by the mayor. Congress had 30 days to overturn it and as we also blogged previously, that at least one Congressman attempted to overturn it. The 30 days expired last week, and the law became effective on February 18, 2017. Washington, D.C., now seventh place in U.S. to officially legalize assisted suicide explains that this means that "D.C. became the seventh jurisdiction in the U.S. to legalize assisted suicide on Saturday, as the Republican-controlled Congress failed to block the law." Although there was a resolution from the House Oversight Committee, the resolution wasn't voted on by the House, so the law became effective.
Tuesday, February 14, 2017
We reported previously that DC had passed an aid-in-dying bill but that there were those in Congress who expressed an intent to overturn it. But it's not just the DC scenario that has advocates concerned. Kaiser Health News ran an article, Aid-In-Dying Advocates, Disheartened By Supreme Court Pick, Brace For New Fight. The article, part of KHN's morning briefing, summaries articles from other publications about Judge Gorsuch's book and his position on aid-in-dying. Click here to access those articles.
While we're on the subject, also check out this article from KHN on Aid-in-Dying Laws Don’t Guarantee That Patients Can Choose To Die, discussing patient access in those states with aid-in-dying laws (we'd previously discussed this in an article from the Denver Post).
Thursday, February 9, 2017
We've all heard the saying, laughter is the best medicine. Kaiser Health News recently ran the story, Laughing Until You Die: Humor May Be Antidote For Pain Of Death For Patients, Survivors which focuses on the benefits of laughter.
An aging generation of boomers, the oldest of whom are now 70, grew up to the background sounds of TV laugh tracks and are accustomed to laughing at things that might not always seem so funny. There’s even a non-profit organization funded by donors, conference revenue and membership dues, whose mission is simply reminding people that laughter is a core ingredient of all facets of life — even end of life.
The article provides several anecdotes from folks who live with this laughter philosophy and even mentions the Association for Applied and Therapeutic Humor. The article cites advice from the association "Make certain that you know the ailing person very well before using humor with them." Exactly what type of humor should be used? According to the article, "[f]or some folks, the process of dying comes with less stress when it’s something of a laughing matter. Not a yuk-yuk laughing matter. But, at its simplest, a willingness to occasionally make light of the peculiarities — if not absurdities — that often go hand-in-hand with end-of-life situations."
Monday, January 30, 2017
The Denver Post ran an article recently that some Colorado hospitals are opting out of the new aid-in-dying law. About 30 hospitals opting out of Colorado’s medical aid-in-dying law, Three major health systems have announced they will not participate explains that
Up to 30 Colorado hospitals are opting out of the state’s new medical aid-in-dying law, either fully or in part, but whether that means the doctors they employ are banned from writing life-ending prescriptions is a controversy that could wind up in court.
At this point, terminally ill Coloradans who want to end their lives under the law will need to find out whether their physicians are allowed to participate.
The article explains that whether the ban applies to doctors for those hospitals depends on the hospital. For example, one hospital group has said that the doctors could "talk to their patients about aid in dying and can write life-ending prescriptions in a hospital. But hospital pharmacies will not fill those prescriptions and patients are not allowed to take their own lives in the hospital, which health officials figure is an unlikely request anyway." The proponents of the law take a different view on whether the ban prevents the doctors from writing the prescriptions, but indicate litigation may be needed to decide the matter.
The article explains the provision of the law
The law says a hospital may prohibit an employed or contracted physician from writing a prescription for someone “who intends to use the aid-in-dying medication on the facility’s premises.” It also makes clear that a healthcare provider can choose whether to participate in medical aid in dying and that the provider must transfer the patient’s medical records to a new health care provider if requested.
With the different interpretation of the law, it may be that litigation will be necessary to figure this out. Stay tuned.
Friday, January 20, 2017
We blogged previously that D.C.'s mayor signed the physician-aided dying bill that was then sent to Congress. According to a January 9, 2017 article in the Washington Post, Congressman plans to block D.C. law to let terminally ill patients end their lives, "Representative Jason Chaffetz (R-Utah) said ... he’ll use rarely invoked congressional authority to block a new law passed by the D.C. Council to allow doctors to help end the lives of terminally ill patients in the city" by the end of January. The article notes that it's rare for Congress to block a D.C. law. On January 12, 2017 Senator Lankford and Representative Wenstrup (Oklahoma and Ohio respectively) introduced resolutions to block the law.
January 20, 2017 in Advance Directives/End-of-Life, Consumer Information, Current Affairs, Federal Statutes/Regulations, Health Care/Long Term Care, State Statutes/Regulations | Permalink | Comments (0)
Tuesday, January 17, 2017
Kaiser Health News ran a story about a project that provides palliative care to individuals who are homeless and terminally ill. Mobile Team Offers Comfort Care To Homeless At Life’s End covers a pilot project in Seattle. "Since January 2014, the pilot project run by Seattle/King County Health Care for Homeless Network and UW Medicine’s Harborview Medical Center has served more than 100 seriously ill men and women in the Seattle area, tracking them down at shelters and drop-in clinics, in tents under bridges and parked cars." The project is funded through 2017 and is designed to avoid unneeded or unwanted care at the end of life while giving people who are homeless input in their care. The care providers arrange for the clients to get medical treatment (through Medicaid or pro bono care), follow up with patients, help patients make decisions and care for them so they don't die alone.
The mobile program has some advantages over other existing programs, such as going to where the patients are located and the providers are "more likely to engage the hardest-to-reach patients, those distrustful of medical care and outsiders...." Although the medical treatment is important, so far, the team is finding that coordination of care is a huge benefit of the mobile program. Mobile palliative care programs do exist worldwide, but aren't prevalent in the U.S. "Worldwide, there are only a few other mobile palliative care programs, all outside the U.S. The closest one in North America is the Palliative Education and Care for the Homeless program — known as PEACH — in Toronto."
Wednesday, January 11, 2017
I'm much overdue in writing about a terrific, recent workshop at Arizona State University's Sandra Day O'Connor College of Law on "The Aging Brain." For me it was an ideal gathering of disciplines, including experts in neurology, psychology, health care (including palliative care and self-directed aid-in-dying), the judiciary, and both practitioners and academics in law (not limited to elder law). Even more exciting, that full day workshop (11/18/15) will lead into a public conference, planned for fall 2017.
Key workshop moments included:
- Preview of a potentially ground-breaking study of early-onset Alzheimer's Disease (AD) centered on a family cluster in the country of Columbia with a genetic marker for the disease and a high incidence of onset. By "early onset," we're talking family members in their 40s. The hope is that by studying the bio-markers in this family, that not only early onset but later-in-life onset will be better understood. Eric Reiman, with professional affiliations with Banner Health, Arizona State University and University of Arizona, spoke at the workshop, and, as it turned out, he was also featured on a CBS 60 Minutes program aired a short time later about the family-based study. Here's a link to the CBS transcript and video for the 60 Minutes program on "The Alzheimer's Laboratory."
- Thoughtful discussion of the ethical, legal and social implications of dementia, including the fact that self-directed aid-in-dying is not lawful for individuals with cognitive impairment. Hank Greely from Stanford University Law and Medical Schools, and Professor Betsy Grey for ASU's Sandra Day O'Connor College of Law led discussions on key issues. As biomarkers linked to AD are identified, would "you" want to know the outcome of personal testing? Would knowing you have a genetic link to AD change your life before onset?
- Overview of recent developments in "healthy" brain aging and so-called "anti-aging" treatments or medications, with important questions raised about whether there is respected science behind the latest announcement of "breakthroughs." Cynthia Stonnington from the Mayo Clinic and Gary Marchant from ASU talked about the science (or lack thereof), and Gary raised provocative points about the role of the FDA in drug approvals, tracking histories for so-called off label uses for drugs such as metformin and rapamycin.
I very much appreciate the opportunity to participate in this program, with special thanks to Betsy Grey and federal Judge Roslyn Silver for making this possible. I've also enjoyed serving as occasional guest in Judge Silver's two-semester Law and Science workshop with ASU law students. Thank you! For more on the Aging Brain programming at ASU, see here.
January 11, 2017 in Advance Directives/End-of-Life, Cognitive Impairment, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Estates and Trusts, Ethical Issues, Federal Statutes/Regulations, Health Care/Long Term Care, Programs/CLEs, Science | Permalink | Comments (0)
Tuesday, December 27, 2016
The mayor of DC signed aid-in-dying legislation for the District which now has to be sent to Congress for a 30 day review period. Bowser quietly signs legislation allowing terminally ill patients to end their lives explains that the law is based on Oregon's statute. Congress has 30 days to approve or override it, Washington, D.C., Approves Aid-in-Dying Bill.
Thursday, December 22, 2016
Kaiser Health News reported that "a coalition of emergency and social service providers is working to create an electronic registry for POLST forms so they will be available to first responders and medical providers when they are needed. The group is starting with a three-year pilot project in San Diego and Contra Costa counties that could serve as a model for a single, statewide registry. Paper-based POLST forms are used across the nation, but electronic registries exist only in a few states, including Oregon, New York and West Virginia."
The article, California Tests Electronic Database For End-Of-Life Wishes, explains that the registry is envisioned as a cloud-based portal where the providers would load the forms. The advantage, of course, is that the provider would have access to the POLST regardless of the patient's location. Since multiple agencies are involved, there are some hurdles to overcome to make this a reality. One expert quoted in the article prefers that the registry be expanded to include advance directives as well as POLST forms.
Wednesday, December 21, 2016
Last week Colorado's governor signed the medical aid-in-dying bill on December 16, 2016. The law went into effect immediately, according to an article in the Denver Post, Colorado medical-aid-in-dying law signed by Gov. John Hickenlooper, takes effect immediately. The law had strong support from voters. The week before the Governor signed the bill into law, the Denver Post ran an article that many folks in Colorado were already making inquiries about requesting the prescriptions. The article noted that the request form for those patients with terminal illness has been made "available on the Compassion & Choices website. The Colorado Department of Public Health and Environment will keep the form, along with an attending-physician form, and track the number of people who seek to use the law."
Monday, December 19, 2016
We have written several posts about the graying of the prison population. Here is one more-looking at the long term care prisons provide, functioning in some instances as a nursing home or a hospice. Kaiser Health News (KHN) ran the story, More Prisoners Die Of Old Age Behind Bars.
The number of federal and state prisoners age 55 or older reached over 151,000 in 2014, a growth of 250 percent since 1999.
As this population grows, prisons have begun to serve as nursing homes and hospice wards caring for the sickest patients. The majority of state prisoners who died in 2014 were 55 years or older, and 87 percent of state prisoners died of illnesses, according to the report. The most common illnesses were cancer, heart disease and liver failure.
The article, noting that elders may have multiple health conditions, reports of one inmate with dementia who was placed in the general population rather than in the medical wing. The article also discusses the early release program in some states, known as "compassionate release"
For prisoners clamoring to spend their dying days at home, U.S. prison jurisdictions have some laws on the books, often called “compassionate release” or “medical parole,” allowing for early release if prisoners are very sick and not a threat. But in practice, very few inmates are set free through these programs, said Dr. Brie Williams, director of the University of California Criminal Justice and Health Project in San Francisco.
However, compassionate release isn't always the solution as the article points out, especially when those seeking release are violent offenders, as the article explains some instances where early release of a prisoner resulted in another crime, or release was obtained through fraud. But without compassionate release, the prisoners die in prison, and thus the prison needs to provide nursing home or hospice care for inmates.
What's the solution to this growing problem? " Williams has been watching the population of older prisoners continue to grow, outpacing the general population of the U.S. As this trend continues, she said, prisons and jails need to catch up... 'I’m talking about a massive expansion of the field of palliative care into the correctional system,” she said, “so it’s integrated into the fabric of correctional care.'”
Thursday, November 3, 2016
The Guardian ran a story last month about proposed legislation in the Netherlands for elders who aren't terminally ill, but instead believe they have lived long enough. Netherlands may extend assisted dying to those who feel 'life is complete' explains that "[t]he Dutch government intends to draft a law that would legalise assisted suicide for people who feel they have “completed life” but are not necessarily terminally ill." Cabinet ministers have provided the Dutch Parliament with a letter about the plan, explaining "people who 'have a well-considered opinion that their life is complete, must, under strict and careful criteria, be allowed to finish that life in a manner dignified for them'." The intent is to limit the law's application to elders "'because the wish for a self-chosen end of life primarily occurs in the elderly, the new system will be limited to' them." The article indicates that there would be safeguards in the law. The target for completing the draft legislation is the end of 2017.
Thanks to Ron Hammerle for alerting me to the proposed legislation.
Tuesday, November 1, 2016
With just a few more days until the election, Coloradans are considering whether to vote in favor of physician aid-in-dying. Colorado Wrestles With Ethics Of Aid-In-Dying As Vote Looms published by Kaiser Health News (KHN) explains why some are supporting the measure, and others are opposing it. As well, both sides are gathering large amounts of money to support their positions:
The ballot initiative is drawing passion — and plenty of money.
According to the latest filings with the Colorado Secretary of State’s office, backers have raised about $5.6 million, mostly from Compassion & Choices Action Network.
The “No Assisted Suicide Colorado” campaign has raised $2.4 million. That money is primarily coming from the Roman Catholic Archdiocese of Denver, which has donated $1.1 million, as well as other archdioceses around the country.
The Colorado Medical Society has taken a neutral position and the story offers some statistics about doctors' views of the measure, with a majority (although it's close) supporting the measure.
Monday, October 31, 2016
The Washington Post recently had a good article titled Facing Financial Reality When Early Dementia is Diagnosed. It begins with Chuck McClatchey's realization that something was wrong:
He moved to Fort Worth at age 61 with his partner Bobbie Duncan, and they spent $25,000 in savings on a fixer-upper house. His plan was to work until he was 70. But then things got strange. “I was having trouble understanding new technologies and things that I should have known off the top of my head” and having trouble using Word and Excel and PowerPoint, “things I had known for years."
He left that job but had problems in another, simpler job at Lowe’s.
Then one day, amid growing confusion, came clarity.
“I brought home a little desk for me to put together,” he said. “I love to put things together, the more complicated the better.” It should have taken about half an hour. Instead, two hours later, “the pieces just weren’t going together like I thought they should.”
Duncan finally said what they both knew. He needed to see a doctor about what was going on in his brain. The diagnosis was Alzheimer’s. . . .
McClatchey's early diagnosis allowed him to get help while he was still well able to participate in planning. He applied for Social Security disability at age 61 and also became an "early stage advisor" for the the Alzheimer's Association.
Reading this article reminded me of a good friend who also received a diagnosis of Alzheimer's at an early stage. Betty has often inspired me by how she has approached this fact. She quietly told friends of her diagnosis, but she did not retreat from life. Betty stays engaged and has a full social life. She has made critical accommodations -- she keeps a daily journal to help with tasks and memory -- and her children have rallied to support and help her, while still giving her as much autonomy as possible. Indeed, her family was instrumental in these changes as they insisted on that first evaluation, rather than brushing away early warning signs as merely due to stress. Thus, "self awareness" of both Betty and her family has been essential in creating a short and long range plan for the future.
The Post article also suggests that not every financial professional is skilled at recognizing how to help individuals with cognitive impairments, whether diagnosed or undiagnosed. I think this is true for attorneys and other professionals as well. Good intentions alone are not enough. From the article:
Being good with money isn’t the only skill required to help dementia sufferers. Corey Purkat, an Oakdale, Minn., financial planner, found himself unable to help a couple in their 80s who hired him to help sort things out in the early stages of the wife’s dementia. She had been a financial professional whose memory issues rapidly worsened. As they did, “she got defensive that someone would have to help her with something she had done for a living.” That put more stress on her husband, who decided “he wasn’t up to making the hard decisions.”
“I did what I could, and I did the best I could,” he said of their amicable parting. But if a similar case comes up in the future, he said, “my goal is to refer them to someone with more experience” with dementia.
It takes courage to get a diagnosis when early, subtle warning signs appear. It takes courage to help a family member get that diagnosis. Our thanks to George Washington Law Professor Naomi Cahn for sharing the link to this and other timely Washington Post articles.
Sunday, October 30, 2016
The New England Journal of Medicine published a study that shows by region where people spend more time at home at the end of life. Days Spent at Home — A Patient-Centered Goal and Outcome notes that
Being home at the end of one’s life will never be a universal goal, but our experience and academic research suggest that, all else being equal, patients would rather be at home than in health care facilities. When surveyed about their preferences for dealing with a terminal illness, most people (86%) indicated that they would prefer to be at home in their final days. In addition, they would not want to be on a ventilator in order to gain an extra week of life, and they are not opposed to drugs that could improve symptoms but potentially shorten life. These preferences are highly consistent across regions of the country and people’s socioeconomic status.1 Despite this consistency in end-of-life preferences, there is wide regional variation in the intensity of, expenditures on, and locations of care provided during the last 6 months of life.
The Wall Street Journal reported on the study. Where the Elderly Die Can Vary by Region, Study Shows explains that
How much time people spend in hospitals or nursing homes in the final months of life, instead of at home, varies widely depending on where they live, new research shows.
Across the Rockies and regions of the Gulf Coast, the dying spend more than two additional weeks hospitalized or in other facilities, on average, compared with those at the end of life in the Midwest and Montana, researchers reported Wednesday in the New England Journal of Medicine.
In other parts of the country, the picture is more mixed but still differs sharply from one community to another.
The study also looks at the differences in Medicare spending as a result of the regional variations. "Research suggests one reason for the geographical spending swings may be that doctors practice medicine differently in some areas of the country than others, with some doctors doing more despite little difference in results." Even in some instances where the patient's care was supposed to be delivered at home, that didn't occur. "The ... study also found that health-care and hospice services intended to keep people at home perhaps did not do so. Regions where use of home care and hospice were greater also had higher use of hospitals and nursing homes ...."