Sunday, June 4, 2017
The New York Times ran an article giving an update on California's aid-in-dying law. The numbers are not from state officials but come from Compassion in Choices. They report "at least 504 terminally ill Californians have requested a prescription for life-ending drugs since a state law allowing physician-assisted deaths went into effect in June 2016... [representing] ... those who have contacted Compassion & Choices...." The article notes that once the state publishes the required data there will be a more accurate picture of the law's application. The article also references the number of facilities that have written policies on recognizing the prescriptions. The article also reminds us that a lawsuit had been filed some time back to challenge the law, with a hearing scheduled for June 16, 2017.
Tuesday, May 30, 2017
Last week I received an email from the Hastings Center with the subject line "What Do We Owe the Frail Elderly?" This intrigued me because I often have a conversation with my students about what, if anything, we "owe" the generation before us. I typically have this conversation in the context of discussing funding of public benefits and other programs specifically for America's elders. Here is the information about the casebook
A woman juggles caring for her aged father at home and going to work. A volunteer cares for an 83-year-old man who lives alone and wonders why the man’s son doesn’t take more of an interest. Staff members at a nursing home, discussing a patient with dementia who hits staff members, consider whether it’s acceptable to control his behavior with antipsychotic medication, knowing that antipsychotics increase the risk of stroke in people with dementia. These are three of the 10 cases in Caring for Older People in an Ageing Society, the second edition of an online bioethics casebook launched this week. The casebook aims to support professional and family caregivers by helping them recognize and respond to situations that pose ethical uncertainty... The bioethics casebook was the product of a project with the National University of Singapore Centre for Biomedical Ethics, The Hastings Center, and Oxford University’s Ethox Centre. Explore the Casebook.
Additional information about the book is available from The Hastings Center website: "an innovative web-based casebook that focuses on ethical challenges of caring for people in an aging society. It is geared to those who provide community-based care to frail or chronically ill people living at home, in a family member’s home, or in a nursing home. The casebook will include fictional cases along with ethics commentaries, clinical perspectives, reflection and discussion questions, and other resources...."
This second volume of the casebook focuses on elders while the first volume focuses on difficult decisions. For more information, click here.
Wednesday, May 24, 2017
I was catching up on some reading last week when I ran into some information about the PREPARE project. PREPARE for your care provides folks with "a range of tools to help people discuss their wishes for medical care with family, friends, and medical providers." Voice over narration accompanies the web pages in either English or Spanish. The purpose of PREPARE is to help someone "make medical decisions for yourself and others... talk with your doctors ...[and] get the medical care that is right for you." PREPARE not only helps a person make decisions and talk to her doctors, it provides assistance with evaluating priorities, communicating one's wishes to others, and providing flexibility for the decision-maker. PREPARE also helps to ready the person for conversations with her doctors and to complete a 5-step interactive action plan.
Monday, May 22, 2017
In what is described as a "first" for the National Academy of Elder Law Attorneys (NAELA), the organization through its New York Chapter will present argument on behalf of individuals seeking to establish access to "aid in dying." On April 27, the New York Chapter was granted leave to appear as amicus curiae in Myers v. Schneiderman before the New York Court of Appeals. Oral arguments are scheduled in Albany on May 30, 2017.
At issue is New York's penal law prohibiting assistance in "suicides." The original suit, filed in February 2015, sought a ruling that the statute, characterized by opponents as "antiquated," should be interpreted as not reaching the conduct of a physician that provides aid-in-dying where the patient is terminally ill and mentally competent and voluntarily seeks "terminal medication." Alternatively, the opponents of the law argue that the statute violates the rights of privacy and/or equal protection guaranteed by the New York State Constitution. New York's trial level court dismissed the challenge as a matter of law, on the grounds that New York's penal law was "clear on its face."
In joining the challenge to the dismissal, which was affirmed by appellate division, New York NAELA wrote:
As an organization of lawyers who represent the elderly and persons with disabilities, the New York Chapter [of NAELA] believes that a proper interpretation of New York's "assisted suicide" laws and due consideration of Appellants' constitutional challenges should be based on a fully developed factual record. These are issues of great moment to the elderly and those who love them and to the administration of justice in this State. This Court should have the benefit of a hearing and findings of relevant evidence before deciding them. . . .
What would assist this Court in fairly construing the Penal Law are facts relating to aid-in-dying. While the language of the statute is the starting point for interpretation, its words do not exist in a vacuum.
For more on the arguments, including links to the various parties' appellate briefs in Myers, see the "End of Life Liberty Project."
May 22, 2017 in Advance Directives/End-of-Life, Cognitive Impairment, Discrimination, Ethical Issues, Health Care/Long Term Care, Science, State Cases, State Statutes/Regulations | Permalink | Comments (0)
Tuesday, March 28, 2017
I'd previously blogged about special EMTs that can help avoid trips to the ER for certain folks near the end of life. Kaiser Health News recently ran a story about "pre-hospice": ‘Pre-Hospice’ Saves Money By Keeping People At Home Near The End Of Life. The article explains the problem and one company's solution:
Most aging people would choose to stay home in their last years of life. But for many, it doesn’t work out: They go in and out of hospitals, getting treated for flare-ups of various chronic illnesses. It’s a massive problem that costs the health care system billions of dollars and has galvanized health providers, hospital administrators and policymakers to search for solutions.
Sharp HealthCare, the San Diego health system where [one individual] receives care, has devised a way to fulfill [the patient's] wishes and reduce costs at the same time. It’s a pre-hospice program called Transitions, designed to give elderly patients the care they want at home and keep them out of the hospital.
How does this pre-hospice work? The article explains it. "Social workers and nurses from Sharp regularly visit patients in their homes to explain what they can expect in their final years, help them make end-of-life plans and teach them how to better manage their diseases. Physicians track their health and scrap unnecessary medications. Unlike hospice care, patients don’t need to have a prognosis of six months or less, and they can continue getting curative treatment for their illnesses, not just for symptoms."
The article suggests that the need for pre-hospice programs will only grow in the near future as the Boomers keep growing older and older. But there are obstacles and one in particular is huge. If you guessed money, you'd be right. "[A] huge barrier stands in the way of pre-hospice programs: There is no clear way to pay for them. Health providers typically get paid for office visits and procedures, and hospitals still get reimbursed for patients in their beds. The services provided by home-based palliative care don’t fit that model."
The article discusses the need for and importance of palliative care, other innovations and the catalyst for the pre-hospice program. Delving into the advantages of the pre-hospice program and how it works for patients. The article notes that not only will there be an increased need for programs to keep folks at home, in addition to the payment hurdle, there are "not enough trained providers are available. And some doctors are unfamiliar with the approach, and patients may be reluctant, especially those who haven’t clearly been told they have a terminal diagnosis." And, of course, what will Congress do about health insurance, including Medicare.
Monday, March 27, 2017
Amos Goodall sent me a link to an article he recently wrote, How to plan for end-of-life wishes. Referencing the Conversation Project, Amos writes about how important it is for a client to let others know what the client wants.
These questions boil down to the four Ws:
▪ Who should speak for you when you can’t?
▪ What should they be saying?
▪ When do you want these issues raised?
▪ Where do you want to spend your final time — at home or in a hospital?
Essentially, you need to let folks know how you want to live your life at its end.
After discussing the law, Amos turns back to the Conversation Project and references the toolkit that is available and notes that his firm has adapted some resources for their clients which anyone can access via his firm's website.
According to the project's website, the purpose of the Conversation Project is "to helping people talk about their wishes for end-of-life care." The project offers a 12 page starter kit (available in 8 languages) as well as a 16 page toolkit on choosing and being a health care proxy. There's a 20 page starter kit for those who have a family member or significant other with dementia, including Alzheimer's disease and an 11 page kit for talking to the patient's doctor. There's also one when the patient is your child.
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.