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 .
Thursday, September 6, 2018
Is suicide by older adults ever a rational choice? It’s a topic many older people discuss among themselves, quietly or loudly — and one that physicians increasingly encounter, too. Yet most have scant training or experience in how to respond, said Dr. Meera Balasubramaniam, a geriatric psychiatrist at the New York University School of Medicine.
She has written on the topic with a colleague, in an attempt "to generate more medical discussion,... in a 2017 anthology, “Rational Suicide in the Elderly,” and she revisited it recently in an article in the Journal of the American Geriatrics Society." The Hastings Center has also weighed in on the issue with the current Hastings Center Report with "a debate over “voluntary death” to forestall dementia."
The article acknowledges that suicide is an important public health issue that also includes older adults. The article explains the issues on both sides of this debate. For example,
Failing to take action to prevent suicide, some ethicists and clinicians argue, reflects an ageist assumption — one older people themselves aren’t immune to — that the lives of old or disabled people lack value.
A tolerant approach also overlooks the fact that people often change their minds, declaring certain conditions unendurable in the abstract but choosing to live if when the worst actually happens.
Slippery-slope arguments factor into the debate, too. “We worry that we could shift from a right to die to a duty to die if we make suicide seem desirable or justifiable,” Dr. Balasubramaniam said.
The article explores some of the research regarding suicide and features some quotes from individuals in addition to experts.
Wednesday, September 5, 2018
When a resident of a long term care facility dies, should that person's passing be marked in some way? According to a recent article in Kaiser Health News, Creating Rituals To Honor The Dead At Long-Term-Care Facilities one expert says the answer to that question is yes. This expert
Tuesday, August 28, 2018
While courts are most often called upon to appoint guardians or conservators in the absence of an authorized agent, another way in which courts may be required to act is when family members disagree about the course of care under private arrangements. High profile examples of how this can arise often involve celebrities. The latest example seems to involve comedian Tim Conway, where his wife and daughter are reportedly at "odds over his medical treatment." From People magazine's online site comes this sad report:
The 84-year-old Carol Burnett Show star’s daughter Kelly is asking to be appointed conservator of her father and be in charge of his medical treatments, according to court documents obtained by PEOPLE and first reported by The Blast.
Kelly, 56, filed the documents in Los Angeles on Friday, claiming Conway’s wife Charlene is “planning to move him out of the excellent skilled nursing facility he is currently at” and place him in one that won’t give him access to “registered nurses at all times and his 24-hour caregiver and speech therapist (to help with swallowing).”
Charlene is Conway’s second wife. He was previously married to Kelly’s mother Mary Anne Dalton from 1961-78. (In addition to Kelly, they share daughter Jackie and sons Jaime, Tim Jr., Pat, Corey and Shawn.)
Kelly also states that Conway cannot “properly provide for his personal needs for physical health, food, and clothing” and is “almost entirely unresponsive.”
Second marriages, where the families did not blend well, often seem to be a factor, especially if money becomes an issue. My thanks to my Dickinson Law colleague Laurel Terry for sharing this item for our Blog.
August 28, 2018 in Advance Directives/End-of-Life, Cognitive Impairment, Consumer Information, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Estates and Trusts, Ethical Issues, Health Care/Long Term Care, State Cases | Permalink | Comments (0)
Friday, August 10, 2018
Kaiser Health News ran a story How Soon Is Soon Enough To Learn You Have Alzheimer’s? Do you want to know, or instead think just it's age-related memory loss?
The prospect of having Alzheimer’s can be so scary, and the current treatment options so few, that many people dismiss memory problems or other symptoms rather than investigate them, say Alzheimer’s specialists; it’s estimated that as many as half of all cases aren’t diagnosed.
But that may soon change. Researchers are making progress in measuring beta-amyloid and other Alzheimer’s biomarkers in blood that might eventually be able to reliably, inexpensively and non-invasively identify the disease years before cognitive symptoms develop.
Despite the scariness of the diagnosis, the article notes good reasons for early diagnosis, including discovering the underlying cause is a treatable condition, saving money "in terms of health costs and long-term care costs over the course of their lifetime," the time to plan for incapacity and "[r]esearchers hope that by getting more Alzheimer’s patients diagnosed early on, more people with the disease will, like Jose, be able to make the best of the health they have."
Tuesday, August 7, 2018
We have had a number of posts of late regarding medical aid-in-dying, so I was interested in this article in the Washington Post, Assisted suicide is controversial, but palliative sedation is legal and offers peace. The article opens relating one individual's experiences and explains that "[u]nder palliative sedation, a doctor gives a terminally ill patient enough sedatives to induce unconsciousness. The goal is to reduce or eliminate suffering, but in many cases the patient dies without regaining consciousness." The article makes a stark contrast between physician aid-in-dying, which is authorized in a handful of states, compared to "[p]alliative sedation [which] has been administered since the hospice care movement began in the 1960s and is legal everywhere." The article notes that palliative care is not without concerns, mainly moral lconcerns on the part of health care providers, with variations in policies throughout hospitals.
Where is the line between terminal sedation and euthanasia, ponders the article, with positions offered on both sides.
[M]any doctors who use palliative sedation say the bright line that distinguishes palliative sedation from euthanasia is intent. ... "There are people who believe they are the same. I am not one of them,” said Thomas Strouse, a psychiatrist and specialist in palliative-care medicine at the UCLA Medical Center. “The goal of aid-in-dying is to be dead; that is the patient’s goal. The goal in palliative sedation is to manage intractable symptoms, maybe through reduction of consciousness or complete unconsciousness.”
Others, including the National Hospice and Palliative Care Organization, recommend that providers use as little medication as needed to achieve “the minimum level of consciousness reduction necessary” to make symptoms tolerable.
The question often posed is whether terminal sedation will hasten death, and in some cases, no antibiotics, nutrition or hydration are provided and whether death occurs sooner depends in large part on the person's condition. As one expert noted, "in all cases the goal isn’t death but relief from suffering."
When is the use of terminal sedation appropriate? The article discusses its use to relieve "existential suffering" which is defined by "the hospice and palliative-care group ... as 'suffering that arises from a loss or interruption of meaning, purpose, or hope in life.'" In comparing it to aid-in-dying, it may provide an option for those who are not eligible for aid-in-dying assistance. "Whether palliative sedation truly ends suffering is not knowable, although doctors perceive indications that it does."
Thursday, July 19, 2018
During a session at the first day of the 21st Annual Pennsylvania Elder Law Institute, we had an interesting dialogue about how best to utilize Physician Orders of Life-Sustaining Treatment (POLST) forms. One attorney described how clients sometimes arrive at her law firm for advice on various estate planning matters, including a blank POLST form that was given to them in the hospital. The client asks, in essence,"what should I do with this?" One attorney said she walks through the form with clients, but always emphasizes that the most important part of the process is the conversation with the client's physician about her choices that should be happening before completing the document.
Along that line, there is a timely post on the Health Affairs Blog today, with the headline "Counting POLST Form Completion Can Hinder Quality." The authors, two physicians in Oregon, describe an incident in which a patient reported feeling pressured at a hospital to complete a POLST form, and they raise the potential for the pressure being a side effect of that patient's health plan keeping track of frequency of completion of POLSTs or other advance directives for all patients 65 or older, marking a high rate of completion as success. They observe:
Many stakeholders have been concerned about how best to measure the quality of advance care planning and use of the POLST form. Some health plans and payers measure the frequency of POLST form completion without a clearly delineated eligible denominator population. Use of such a metric erodes the quality of the POLST program as the following case illustrates. . . .
When health care professionals encourage patients who are “too healthy” to complete a POLST form (instead of an advance directive), even when orders are for “CPR/Full Treatment,” they may cause harm. If the patient later loses decision-making capacity and clinically deteriorates to a condition in which he or she would have desired a comfort-oriented approach, the presence of the inappropriate POLST may increase the decision-making burden on the family. Another concern is that some healthy patients have been denied life insurance because their medical record inappropriately includes a POLST form; the company incorrectly believing the patient has a limited life expectancy.
The authors argue persuasively that:
Accordingly, we do not believe that POLST forms should be mandated or counted as a quality measure. Instead, POLST quality measures should count conversations about patients’ goals for care as they near the end of their lives.
I recommend the full article, linked above, including review of their "seven imperatives to preserve POLST quality."
July 19, 2018 in Advance Directives/End-of-Life, Consumer Information, Current Affairs, Ethical Issues, Health Care/Long Term Care, Programs/CLEs, State Statutes/Regulations, Weblogs | Permalink | Comments (0)
Friday, July 13, 2018
We have blogged a couple of times at least about California's Aid-in-Dying law, most recently about the judge declaring the law unconstitutional. While the constitutionality issue makes its way through the court system, California in late June released statistics to show how many folks had previously availed themselves of the law. The New York Times reported that Nearly 400 People Used California Assisted Death Law in 2017.
Here are some statistics from the article:
374 terminally ill people took drugs to end their lives in 2017, the first full year after a law made the option legal....
577 people received aid-in-dying drugs last year, but not everyone used them....
Of the 374 who died, about 90 percent were more than 60 years old, about 95 percent were insured and about 83 percent were receiving hospice or similar care. The median age was 74....
Most of the recipients were college educated and receiving hospice or similar care....
The 374 people who died include 11 people who were prescribed drugs in 2016 but died last year.
Another 86 people were prescribed the lethal drugs but died without taking them, while the fate of the remaining 128 people wasn't reported.