Wednesday, July 17, 2019
Previously I had blogged about the legal battle over removing life support from Frenchman, Vincent Lambert. The New York Times reported recently on his death, Vincent Lambert, Frenchman at Center of Right-to-Die Case, Dies at 42.
His family and his spouse disagreed on his wishes. "His wife, Rachel Lambert, said that he had clearly stated that he would not wish to live in a vegetative state. His parents argued that ending his life support amounted to the murder of a disabled person. Siblings and other family members took different sides in the dispute." As the article notes, "[e]uthanasia and assisted suicide are illegal in France. But the law allows patients who are terminally ill or injured with no chances of recovery to decide to stop treatments if the measures “appear useless, disproportionate” or if they seem to have no other effect than 'artificially maintaining life.'" An article about the final court decision is available here.
In a related matter, the Judge for the Florida Schiavo case has written a chapter for a book, as explained in this article:
Inside the Terri Schiavo case: Pinellas judge who decided her fate opens up. You should read it.
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 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.
Monday, May 27, 2019
Dr. Jay Wolfson, who served as the guardian ad litem in the Schiavo case, recently sent me a link to a BBC story about Vincent Lambert. Vincent Lambert: Life support must resume after court reverses ruling explains that after the Paris Appeals Court ruling, doctors had to resume life support for Mr. Lambert, in a vegetative state since an accident in 2008. His spouse supports terminating life support, while his parents oppose it. When reading the article, I couldn't help but notice the similarities to some occurrences in Schiavo.
The dispute has spread beyond the family of Mr. Lambert. "The UN's Committee on the Rights of Persons with Disabilities had called on France to intervene and delay the move to withdraw the life support while they investigated his case further. France's ministry of health said it was not bound by the committee."
Saturday, May 25, 2019
The National Center for State Courts has announced the release of a new guardianship course, Finding the Right Fit: Decision-Making Supports and Guardianship.
According to the press release, this interactive on-line course covers
• How to support friends and loved ones in making their own choices about their health, finances, and lifestyle.
• Legal options, including powers of attorney and advance directives. • How to become a guardian.
• How a guardian can support a person’s decision-making.
• Identifying and understanding the risk of abuse, neglect, and exploitation that comes with any of the above options.
The course takes about 2 hours to complete and you have to create an account to access it. Check it out!
May 25, 2019 in Advance Directives/End-of-Life, Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care, Programs/CLEs, Webinars | Permalink | Comments (0)
Wednesday, March 27, 2019
The NJ legislature has passed a medical aid in dying bill which the Governor of NJ has indicated he will sign. New Jersey approves bill allowing terminally ill patients the right to die reports that the votes were somewhat close, with the NJ House voting 41-33 and the NJ Senate, 21-16. Safeguards similar to the laws in other states for medical aid in dying are included in the NJ legislation. "Two physicians would be required to attest that the person had less than six months to live. The patient would have to ask for the medication three times — twice orally and once in writing — before receiving it. The written request would have to be witnessed by two people, including one who is not a family member, a beneficiary of the patient's will or the attending physician... The patient would then be required to self-administer the medicine, if he or she decides to take it at all." The legislation is available here.
Friday, March 8, 2019
The Baltimore Sun reported that the Maryland House of Delegates has passed a measure to legalize physician-aided dying in Maryland. Maryland House of Delegates approves legalizing medically assisted suicide notes that the bill passed by a close margin and a corresponding bill is pending in the Maryland Senate.The House version contains various protections, including "[t]he patient must be 18 years old, have a terminal illness with a prognosis of less than six months to live and be able to take the drugs by themselves. The patient must request the prescription on three separate occasions, including at least once in private and at least once in writing — provisions meant to prevent patients from being coerced into obtaining the medication." More information about the House bill is available here.
Monday, March 4, 2019
The Law Library Journal has published a comprehensive bibliography on Physician-Aided Dying. Physician-Assisted Death: A Selected Annotated Bibliography, prepared by Alyssa Thurston, who is head of Reference Services at Pepperdine University School of Law Library in Malibu, Calif., provides a comprehensive update on this important topic.
Here is the abstract of the paper. "Physician-assisted death (PAD), which encompasses physician-assisted suicide and physician-administered euthanasia, has long been controversial. However, recent years have seen a trend toward legalizing some form of PAD in the United States and abroad. The author provides an annotated bibliography of sources concerning PAD and the many issues raised by its legalization."
The introduction offers some helpful information for the reader:
¶3 This bibliography compiles selected secondary and primary materials on
PAD. Secondary sources include books, book chapters, law review and law journal
articles, bibliographies, websites, and current awareness materials, and are mostly
limited to publication dates of 2007–2018.10 Many of these materials discuss multiple
issues within the broader topic of PAD, and I have categorized them by subject
based on what I perceive to be their primary themes.
¶4 Most of the included materials focus on the United States, but a number of
sources also discuss other countries, and one section is devoted to international
experiences with PAD. In addition, PAD is often debated alongside other end-oflife
topics, such as withdrawal or refusal of medical treatment,11 palliative care,12
hospice care,13 or the use of advance directives,14 and some of the scholarship listed
in this bibliography concurrently address one or more of these subjects in depth.
Thanks to my colleague, Professor Brooke Bowman, for alerting me to this helpful resource!
Thursday, January 17, 2019
My dear friend and executive director of the ABA Commission on Law and Aging sent me a notice about a part-time employment opportunity for two students. The Coalition to Transform Advanced Care (C-TAC) ("an alliance of 140 organizations whose sole purpose is to ensure that all Americans with advanced illness, especially the sickest and most vulnerable, receive comprehensive, high-quality, person- and family-centered care that is consistent with their goals and values and honors their dignity") has announced two student fellowship opportunities for a project, "two part-time, temporary positions as C-TAC Changemaker Fellows. Fellows will primarily undertake research for programs that align with their interests (policy, family caregiving, health disparities, data/metrics) and will be assigned a C-TAC mentor. Supporting program staff will also be an important opportunity for the Fellows to learn and support projects." Students need to be at least seeking a bachelor's or master's degree and have relevant interests in advocacy, public policy and the political realm. More information-contact Allan Malievsky (AMalievsky@thectac.org) with “C-TAC Changemaker” in the subject line.
Sunday, January 6, 2019
The Hastings Center addressed this in its latest special report, Defining Death: Organ Transplantation and the Fifty-Year Legacy of the Harvard Report on Brain Death. The abstract for the introduction explains:
This special report is published in commemoration of the fiftieth anniversary of the “Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death,” a landmark document that proposed a new way to define death, with implications that advanced the field of organ transplantation. This remarkable success notwithstanding, the concept has raised lasting questions about what it means to be dead. Is death defined in terms of the biological failure of the organism to maintain integrated functioning? Can death be declared on the basis of severe neurological injury even when biological functions remain intact? Is death essentially a social construct that can be defined in different ways, based on human judgment? These issues, and more, are discussed and debated in this report by leading experts in the field, many of whom have been engaged with this topic for decades.
Thursday, December 13, 2018
The New York Times reported last week on psychiatric advance directives in Now Mental Health Patients Can Specify Their Care Before Hallucinations and Voices Overwhelm Them
"[A] psychiatric advance directive, a legal document declaring what treatment he does and doesn’t want. Increasingly, patients, advocates and doctors believe such directives (called PADs) could help transform the mental health system by allowing patients to shape their care even when they lose touch with reality. Hospitals must put them in patients’ medical records and doctors are expected to follow them unless they document that specific preferences aren’t in the patients’ best medical interest."
The article notes that not everyone is in favor of these. For example, "some doctors and hospitals are wary that the documents could tie their hands and discourage treatment they consider warranted. Some worry the directives won’t be updated to reflect medical advances. Others question whether people with serious psychiatric conditions are ever capable of lucidly completing such directives." The article notes that at least 27 states allow for the use of psychiatric advance directives-others may do so as part of the more traditional health care advance directive. The document is seen as an alternative to involuntary commitment.
CMS now requires health care providers to include in their inquiry about health care directives any psychiatric advance directive (see here requirements that hospitals ask if patients have a directive). The directive also allows advance permission by the patient for the health care providers to engage with friends or family, particularly important because during a crisis, the person may "be too unstable or paranoid to give permission." The article gives examples of what might be authorized by the directive, offers suggestions regarding drafting and signing and shares stories of some individuals who have created these directives.
On a side note, the article notes that the directives are referred to as PAD. On an unrelated topic, physician-aided dying is also sometimes shortened to PAD. Make sure your students understand the differences.
Wednesday, December 5, 2018
The American Bar Association Commission on Law & Aging has published the Advance Directives: Counseling Guide for Lawyers. The website explains the usefulness of the guide: "designed to assist lawyers and health care professionals in formulating end-of-life health decision plans that are clearly written and effective... The guide provides detailed information on how to bridge the chasm between lawyers and health care providers. It helps lawyers to provide guidance that is more in harmony with the clinical and family realities that clients face. The foundation for it is a set of eight principles to guide patients and clients through the advance care planning process." The three sections include the planning principles, a checklist for attorneys, and resources. All are available for download individually, or the entire guide may be downloaded for free or purchased from the ABA. The guide contains a lot of helpful info for attorneys, including checklists for a first and second interview, a sample letter to the client's doctor and a HIPAA access form. Check it out!
Tuesday, November 13, 2018
Focusing on the issue of stigma that accompanies the disease, the article notes the impact of Justice O'Connor going public about her condition. Dementia and specifically Alzheimer's can strike any one, regardless of fame or fortune. As the article notes
Justice O’Connor had joined a growing but still tiny group: public figures who choose to share a dementia diagnosis. ... The breakthrough came in 1994, when Ronald and Nancy Reagan released a handwritten letter disclosing his Alzheimer’s disease.
“In opening our hearts, we hope this might promote greater awareness of this condition,” the former president wrote. “Perhaps it will encourage a clearer understanding of the individuals and families who are affected by it.”
Musician Glen Campbell and his family reached a similar decision in 2011, announcing his Alzheimer’s diagnosis, and several farewell concerts, in a magazine interview. The concerts became a 15-month tour and an intimate, unflinching documentary.
The famous folks also include Pat Summit and Gene Wilder. So what is the value of famous folks going public with their diagnosis? We already know that a large number of folks are diagnosed with dementia and that Alzheimer's disease in particular is horrible disease in my opinion.
It’s hardly an obscure condition. About 5.7 million Americans have Alzheimer’s disease, the Alzheimer’s Association estimates. That represents just 60 to 80 percent of people with dementia, which takes multiple forms.
Though dementia rate seems to be declining, possibly because of rising education levels and better treatment for conditions like hypertension, both of which seem to help prevent dementia. But the number of Americans affected will continue to grow as the population grows and ages.
Already, Alzheimer’s has become the fifth leading cause of death for those aged 65 and older — and the only one for which medicine can’t yet offer prevention or treatment.
The article explains the value of famous folks going public with their diagnosis lessens the stigma others may feel from that diagnosis. Plus it may lead to earlier diagnosis for others and although there is no cure, it gives the patient and families more time to plan.
Sunday, November 11, 2018
Kaiser Health News ran a story recently on living with a terminal diagnosis. At Death’s Door, Shedding Light On How To Live explores the impact of such diagnosis on how one person decided to live the rest of her life and how she is coping with the diagnosis. The article lists the things she no longer does (regular exercise) or finds concerning: "[N]o more worrying, even for a minute, what anyone thinks of her. As [she] wrote in a recent blog post, 'All kinds of things … fall away at just about the exact moment the doctor says, ‘There is no treatment.'" She blogs about her situation and has found positive responses from readers yet the article notes others may not prefer to share their lives with strangers: "Other people may have very different perspectives as they take stock of their lives upon learning they have a terminal illness. Some may not want to share their innermost thoughts and feelings; others may do so willingly or if they feel other people really want to listen."
Sunday, November 4, 2018
The ABA Commission on Law & Aging published its September-October newsletter, BIOFOCAL. The lead article is on The Ten Commandments of Mental "Capacity" and the Law.
Recognizing the evolving state on the issue of capacity, the article explains
[R]ecent changes have called the legal term “capacity” into question. The U.N. Convention on the Rights of Persons with Disabilities in Article 12 recognizes that “persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life” and that governments must take measures to assist individuals in exercising their capacity. The emerging principle of supported decision-making focuses on providing the needed support to help people make decisions. Finally, the 2017 Uniform Guardianship, Conservatorship and Other Protective Arrangements Act (UGCOPAA), approved by the Uniform Law Commission for adoption by state legislatures, does not use the term “capacity” – rather, it guides courts in determining whether there is a “basis” for the appointment of a guardian, taking into account needed supports and supported decision-making.
The article goes on to offer Ten Commandments:
1. presume capacity, 2. talk alone to the client, 3. make efforts to increase the client's abilities, 4. recognize there is no one "universal standard for assessing capacity", 5. lawyers shouldn't administer the mini-mental status exam, 6. remember it's capacity to do a specific task, 7. remember to examine the big picture, 8. keep the client's wishes, goals, etc. in the forefront, 9. remember client confidentiality and autonomy, and 10. remember the importance of advance planning.
Sunday, October 28, 2018
The latest issue of the Hastings Center Report is devoted to examining what gives a good life to someone in later life. Volume 48, Issue S3 is titled What Makes a Good Life in Late Life? Citizenship and Justice in Aging Societies. All 15 of the articles are available for free. The topics run the gamut from social policies to age-friendly initiatives to housing to communities to advance directives for people with dementia, to name a few. Be sure to read the introduction before reading any of the individual articles, so you have the context of the volume. Here's the abstract for the introduction
The ethical dimensions of an aging society are larger than the experience of chronic illness, the moral concerns of health care professionals, or the allocation of health care resources. What, then, is the role of bioethics in an aging society, beyond calling attention to these problems? Once we’ve agreed that aging is morally important and that population‐level aging across wealthy nations raises ethical concerns that cannot be fixed through transhumanism or other appeals to transcend aging and mortality through technology, what is our field’s contribution? We argue that it is time for bioethics to turn toward social justice and problems of injustice and that part of doing so is articulating a concept of good citizenship in an aging society that goes beyond health care relationships.
October 28, 2018 in Advance Directives/End-of-Life, Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care, Housing, Science | Permalink | Comments (0)
Thursday, October 11, 2018
Bloomberg Law News ran a recent story about litigation in California. California Veterans Sue for Right to Die in State Home reports on a suit recently filed concerned vets living in a state veterans home.
Terminally ill California veterans wishing to use the state’s assisted dying law must be evicted or leave the state veterans’ home, a lawsuit challenging a regulation prohibiting the use said.
California is among a handful of states that permit assisted suicide. The California Department of Veterans Affairs (CalVet) argues the regulation banning assisted suicide was necessary to avoid violating the 1997 federal Assisted Suicide Funding Restriction Act, the lawsuit said. Veterans contend the agency’s argument is unsupported by law or fact and, in fact, harms terminally ill residents.
The suit was filed the first week of October in trial court in Alameda County. The plaintiffs include 2 veterans groups, a vet from Vietnam, and a non-veteran spouse. Defendants include the California Department of Veterans Affairs and the California Veterans Board.
October 11, 2018 in Advance Directives/End-of-Life, Consumer Information, Current Affairs, Ethical Issues, Federal Statutes/Regulations, Health Care/Long Term Care, State Statutes/Regulations | Permalink
Sunday, September 9, 2018
i was reading about ECHO MOLST the other day. ECHO MOLST is part of Project ECHO
a lifelong learning and guided practice model that revolutionizes medical education and exponentially increases workforce capacity to provide best-practice specialty care and reduce health disparities. The heart of the ECHO model™ is its hub-and-spoke knowledge-sharing networks, led by expert teams who use multi-point videoconferencing to conduct virtual clinics with community providers. In this way, primary care doctors, nurses, and other clinicians learn to provide excellent specialty care to patients in their own communities using an all-teach all-learn model.
Project ECHO links expert specialist teams at a “hub” with primary care clinicians and other professionals in local communities. Primary care clinicians, the “spokes” in the ECHO model, become part of a learning community, where they receive mentoring and feedback from specialists. Together, they manage patient cases so that patients get the care they need. Although the ECHO model makes use of telecommunications technology, it is different from telemedicine.
What makes this training unique? According to the website, "Project ECHO’s innovative approach will support the current and future needs of our clinicians and system leaders. ECHO MOLST will provide long term, sustainable MOLST education that will improve the competency and capacity of clinicians and improve adherence to patient preferences at end-of-life." The video conference 8 week training is set to start on September 13, 2018 .