Friday, May 22, 2015
Professor Rebecca Dresser has written a column on "right to try" laws. "Right to Try" Laws: The Gap between Experts and Advocates was published in the May-June 2015 Hastings Center Report. The abstract for the column provides
The year 2014 brought a new development in the bioethics “laboratory of the states.” Five states adopted “right to try” laws intended to promote terminally ill patients’ access to investigational drugs. Many more state legislatures are now considering such laws. The campaign for right to try laws is the latest move in an ongoing effort to give seriously ill patients access to drugs whose safety and effectiveness remain largely unknown. Although scientists and policy-makers oppose the right to try approach, it has proven quite popular among state legislators and the public.
Monday, May 11, 2015
Last week I was visiting in Ireland, and specifically in Belfast, Northern Ireland, where I was giving a workshop on comparative contract law for students at Queen's University Belfast in its new J.D program. When I visit the city, I always try to save a day for a "dander" around the town, which is wonderfully walkable.
St. George's Market is a favorite spot -- and in fact last year while I was visiting, Queen Elizabeth was there too, a definite surprise, if you know the history of politics in this city.
There is an interesting collection of stalls, that change a bit with the season and the day.
Tuesday, May 5, 2015
Here we go again. Another hard look at why a significant percentage of the public has not signed some form of advanced directive. In April 2015, GAO issued Advance Directives: Information on Federal Oversight, Provider Implementation, and Prevalence, its response to requests made by Senators Bill Nelson (D-Fla), Johnny Isakson (R-Ga), and Mark Warner (D-Va) who were inquiring into the role of the Centers for Medicare and Medicaid Services (CMS) in overseeing providers, including hospitals and nursing homes, that are mandated by law to maintain written procedures and provide information about advance directives.
Perhaps it is just me, but whenever legislators raise this topic, it seems to me the not-so-subtle underlying message is "why aren't people agreeing in writing to forego aggressive health care as they near the end of life so that we can save more money on health care?"
In any event, the report:
- documents current practices for offering living wills, health care powers of attorney, and various alternatives such as DNR and POLST forms (including the potential for some confusion among staff members of health care providers about "who" should be handling the education and signing process),
- refers to a major Institute on Medicine study (Dying in America, 2015) on a similar topic, and
- concludes that there is no "single" point of entry for execution of advanced directives.
As the GAO team observes, "[t]herefore, a comprehensive approach to end-of-life care, rather than any one document, such as an advance directive, helps to ensure that medical treatment given at the end of life is consistent with an individual’s preferences."
Hat tip to Karen Miller, Esq., in Florida for the link to the latest study and report.
May 5, 2015 in Advance Directives/End-of-Life, Consumer Information, Current Affairs, Estates and Trusts, Federal Statutes/Regulations, Health Care/Long Term Care, Medicaid, Medicare | Permalink | Comments (1) | TrackBack (0)
Monday, April 27, 2015
On April 24, 2015, Iowa's Governor signed SF 306 into law, amending Iowa's Guardianship Law to recognize an express right of adult wards to "communication, visitation, or interaction with other persons." The law's effective date is July 1, 2015.
The law further provides that a court shall deny such rights "only upon a showing of good cause by the guardian." In the absence of an ability to give "express consent to such communication, visitation or interaction with a person due to a physical or mental condition, consent of an adult ward may be presumed by a guardian or a court based on an adult ward's prior relationship with such person."
This is an interesting law, especially coming on the heels of the Henry Rayhons trial in Iowa, even though there appears to be no direct correlation. The new provision does not, for example, define "interaction."
According to news reports, Kerri Kasem, the daughter of radio D.J. Casey Kasem, was present at the ceremony and lobbied for the bill after her late father was moved from his nursing home in California, first to Nevada and then to Washington without his children's knowledge or consent:
“This is a silent epidemic,” she said. “There are so many abuses of guardianships and so many abuses of caretakers.”
April 27, 2015 in Advance Directives/End-of-Life, Cognitive Impairment, Current Affairs, Dementia/Alzheimer’s, Elder Abuse/Guardianship/Conservatorship, Estates and Trusts, Ethical Issues, Health Care/Long Term Care, State Cases, State Statutes/Regulations | Permalink | Comments (0) | TrackBack (0)
Sunday, March 22, 2015
The New York Times ran an editorial on March 14, 2015 regarding efforts in states to pass aid in dying legislation. Offering a Choice to the Terminally Ill reports that DC & 15 states are considering such legislation. The editorial describes two recent cases, reviews the opposition, and considers the safeguards provided in the Oregon statute as an example. It also describes situations where doctors provide patients with lethal dosages of medications despite laws to the contrary, noting that "these unregulated practices put patients and doctors on dangerous terrain." Referencing the case of radio host watching her husband who had stopped eating over a period of days, the editorial board says about that case "[h]er inability to help him die humanely is a situation no spouse should have to face."
Friday, February 27, 2015
Check out Volume 48, Issue 1 of the Indiana Law Review which contains articles from the 2013 Program on Law & State Government Fellowship Symposium: State Governments Face the Realities of Aging Populations. Three articles are included from the symposium, all of which are available on-line. The articles include Introduction: Governing Choices in the Face of a Generational Storm, Aging Populations and Physician Aid in Dying: The Evolution of State Government Policy, and What the Future of Aging Means to All of Us: An Era of Possibilities.
Wednesday, January 21, 2015
A new acronym, VSED, is emerging in discussions of end-of-life decision making. It refers to Voluntarily Stopping Eating and Drinking. However, what happens when such a plan is combined with increasing dementia?
As addressed in Paula Span's thoughtful piece for The New York Times' "The New Old Age," it may not be possible to ensure such a plan will be honored, at least not under the existing law of most states. Consider the following example:
"Like many such documents, [Mr. Medalie's Advance Directive] declares that if he is terminally ill, he declines cardiopulmonary resuscitation, a ventilator and a feeding tube. But Mr. Medalie’s directive also specifies something more unusual: If he develops Alzheimer’s disease or another form of dementia, he refuses 'ordinary means of nutrition and hydration.' A retired lawyer with a proclivity for precision, he has listed 10 triggering conditions, including 'I cannot recognize my loved ones' and 'I cannot articulate coherent thoughts and sentences.'
If any three such disabilities persist for several weeks, he wants his health care proxy — his wife, Beth Lowd — to ensure that nobody tries to keep him alive by spoon-feeding or offering him liquids. VSED, short for 'voluntarily stopping eating and drinking,' is not unheard-of as an end-of-life strategy, typically used by older adults who hope to hasten their decline from terminal conditions. But now ethicists, lawyers and older adults themselves have begun a quiet debate about whether people who develop dementia can use VSED to end their lives by including such instructions in an advance directive...."
For more, continue reading "Complexities of Choosing End Game for Dementia." Thanks to Elder Law Attorney Morris Klein for sharing this good article.
Wednesday, January 14, 2015
The New York Times ran an article about the "trend" among states to adopt "right to try" drugs, which allow critically ill patients to try drugs that have not yet been approved by the FDA. Patients Seek 'Right to Try" New Drugs reviews the issues presented by "right to try" laws. These "right to try" laws have been adopted in several states, according to the article, including Arizona, Colorado, Louisiana, Missouri and Michigan. What is truly the goal of "right to try" laws? Get unapproved drugs into the hands of those who need them, or something more?
According to the article, the laws are really about autonomy and control over one's final days.
The laws do not seem to have helped anyone obtain experimental medicine, as the drug companies are not interested in supplying unapproved medications outside the supervision of the F.D.A. But that seems almost beside the point to the Goldwater Institute, the libertarian group behind legislative efforts to pass Right to Try laws. “The goal is for terminally ill patients to have choice when it comes to end-stage disease,” said Craig Handzlik, state policy coordinator for the Goldwater Institute, based in Arizona. “Right to Try is something that will help terminally ill people all over the country.”
According to the article, 10 states are likely to take up "right to try" laws in the 2015 legislative session, with pre-filed bills in a few states so far. The article notes there are critics of such laws. The federal courts have already weighed in on "right to try" laws, with the case, Abigail Alliance for Better Access to Developmental Drugs v. von Eschenbach , 495 F.3d 695 (D.C. Cir. 2007) (cert. denied, 552 U.S. 1159 (2008)). The "right to try laws" do have some limits, which the article describes, using Colorado as an example
The Colorado law, which is similar to ones in other states, permits terminally ill patients who have exhausted their treatment options — including clinical trials — to obtain therapies that have passed at least the first of three F.D.A. investigation phases. The law does not require companies to provide the treatment, nor does it mandate that insurance companies cover it; the law also allows insurance companies to deny coverage to patients while they use drugs under investigation.
For those patients who are terminally ill, there is help under the FDA rules for them to get access to unapproved drugs. "[T]he F.D.A. created a process for granting unapproved therapies to people with exceptional need. Called the “expanded access program” or “compassionate use,” the program ... is [the] way for terminally ill people to request an unapproved therapy after they are rejected from clinical trials." Criticism of the length of the FDA approval process isn't new, and even the "expanded access program" has critics, with an illustration provided in the article.
These "right to try laws" intend to speed up the process by eliminating the FDA involvement. "Once a physician and a patient determine that treatment is the right choice — and that other options have been exhausted — the pair approach the drug company for permission."
So "right to try" laws appear to be one more effort to preserve autonomy and give terminally-ill patients more options for their care; another tool in the tool chest that includes advance directives, POLST, PAD, and DNRs, to name a few.
Thursday, November 20, 2014
The Institute of Medicine (IOM) has released a great graphic on palliative care. What Should You Know About Palliative Care? has six graphics on topics including scope, function, location, family services and the benefits of palliative care. The infographic can be downloaded or a poster can be ordered by sending an email. The webpage also includes a link to the IOM report, Dying In America
Wednesday, November 12, 2014
Professor Reid Weisbord at Rutgers Law School - Newark has a new essay that takes on a challenging, two-part question: Whether a donor's estate should be permitted to sell a decedent's body parts or organs posthumously and whether the proceeds of such sales will be distributed to the donor's heirs or beneficiaries. Professor Reid suggests an appropriate starting place is to define and provide for "anatomical intent" of the donor. Before you start imagining vendors on Craigslist or at Sothebys, be advised the essay anticipates a regulated system.
You probably want to read more about this topic, correct? See "Anatomical Intent" by Reed Weisbord from the November issue of Yale Law Review Forum.
Wednesday, November 5, 2014
Kurzweil Accelerating Intelligence (Kurzweil AI) reported in their October 21, 2014 news a story on new research, Hidden brain signatures’ of consciousness in vegetative state patients discovered. Here’s the opening paragraph “Scientists in Cambridge, England have found hidden signatures in the brains of people in a vegetative state that point to networks that could support consciousness — even when a patient appears to be unconscious and unresponsive. The study could help doctors identify patients who are aware despite being unable to communicate.”
The Kurzweil AI story includes the article’s abstract a segment of which we’ve included here
Going further, we found that metrics of alpha network efficiency also correlated with the degree of behavioural awareness. Intriguingly, some patients in behaviourally unresponsive vegetative states who demonstrated evidence of covert awareness with functional neuroimaging stood out from this trend: they had alpha networks that were remarkably well preserved and similar to those observed in the controls. Taken together, our findings inform current understanding of disorders of consciousness by highlighting the distinctive brain networks that characterise them. In the significant minority of vegetative patients who follow commands in neuroimaging tests, they point to putative network mechanisms that could support cognitive function and consciousness despite profound behavioural impairment.
Consider how these findings may be introduced in litigation where the patient is diagnosed as PVS, with one party seeking to have life-prolonging procedures removed and another objecting and seeking this test for the patient. Should we take this and other medical advances into consideration when drafting advance directives, especially instructions to our health care agents?
Sunday, November 2, 2014
Start your week with a laugh, or at least a smile.
One of the many blogs I read, GeriPal, ran an excellent parody for Halloween that had me howling....with laughter at the author's cleverness. Addressing Unmet Palliative and Geriatric Needs of Zombies is a hysterical must-read. The title gives you an excellent preview. And don't ignore the links in the article to the other sources, especially the one regarding the speed with which the Grim Reaper walks (at least the section on strengths and limitations).
Friday, October 31, 2014
A week ago, CBS's Sixty Minutes interviewed Barbara Mancini, the Pennsylvania nurse accused of helping her elderly father to kill himself with an overdose of morphine. The charges were eventually dismissed by the court, concluding there was insufficient admissible evidence of the charged crime. The transcript of the program, titled "Ending Life," is now available; the daughter's account of her own actions should provide a basis for classroom discussion of several key legal and non-legal issues, including whether "medical orders" are needed to make so-called living wills effective, and the proper roles for hospice workers.
Thursday, October 30, 2014
According to an October 22, 2014 story from the Pew Research Center, Americans of all ages divided over doctor-assisted suicide laws. After referencing the story of Brittany Maynard and the recently released IOM report on Dying in America, the story mentions a study that Pew released on November 21, 2013 on Americans’ views on end of life care.
The October 22, 2014 story notes that last year’s survey found that an overwhelming percentage (66%) of Americans thought that folks had the right to die certain cases. There is less agreement on physician-aided dying, though it is close to even (47% favoring, 49% opposing). The article mentions that there is not that much of a variance based on age, but more so based on “racial and ethnic group, religious group and political ideology.” There is some variation based on age on other issues, however. For example, on the topic of continued treatment in the face of disease without hope for improvement, more younger people wanted their doctors to do all that could be done to keep them alive. (“53% of those ages 18-29 say this, compared with about a quarter (24%) of those ages 50 and older”). As far as decision-making at the end of life, about 25% of those under the age of 30 responded that they’ve considerd this a lot while a little over 40% have not really though much about it, if at all. This compares to the 65+ generation with 47% of those reporting that they’ve given the matter a lot of thought and 32% some thought.
Monday, October 27, 2014
Has anyone else noticed an uptick in eye-catching articles from the Washington Post? Maybe it it just that they are writing about things I'm interested in, but I also notice that I'm getting more recommendations from readers, based on Post pieces. Nice to see this resurgence in a traditional news source.
Along that line, the Washington Post has been running a series on the "Business of Dying," looking at hospice and finding lots of areas for concern. Sunday's piece focuses on the inconsistencies among hospice providers, with gaps in services that may be hard for families to respond to, especially in the midst of end-of-life trauma.
The Washington Post has now published on line an interactive "Consumer Guide to Hospice," co- written by Dan Keating and Shelly Tan. You can search by state or by provider -- and it is free!
Thursday, October 23, 2014
Via The Telegraph:
Doctors and nurses who help severely disabled or terminally ill people to take their own lives are less likely to face criminal charges after Britain's most senior prosecutor yesterday amended guidelines on assisted suicide. Until now all health care professionals faced a greater chance than others of being prosecuted for helping people to die because of the trust their patients placed in them. Alison Saunders, the Director of Public Prosecutions, said this special deterrent would now only apply to those directly involved in a person's care. Anti–euthanasia campaigners accused Ms Saunders of "decriminalising" assisted suicide by health care professionals "at a stroke of her pen". Dr Michael Irwin, the former GP nicknamed "Dr Death" for helping several people kill themselves, said the change was a "wonderful softening" that would "make life easier" for people like him. He said he and many other retired doctors would now feel able to help people travel to Switzerland's Dignitas centre "without worrying". But campaigners for legalisation of assisted dying said the amendment did not go far enough. Ms Saunders insisted the change was simply a clarification and would not offer anyone "immunity" against prosecution for assisted suicide, which is punishable by up to 14 years in jail. Guidelines published by the former DPP, Sir Keir Starmer, in 2010 say people acting "wholly out of compassion" could avoid prosecution for helping people end their lives. But the guidelines also list circumstances that would make prosecution more likely. They include where someone is "acting in his or her capacity" as a medical doctor.
Source/more: The Telegraph
Sunday, October 5, 2014
I've been posting quite a bit about end of life issues. I wanted to be sure everyone saw the story in the NY Times on September 25, 2014 about one child's struggle to honor her dad's wish to die at home. Unfortunately, this isn't a new issue, and clearly one that isn't near resolution. The story, Fighting to Honor a Father’s Last Wish: To Die at Home tells the story of Joseph Andrey and his daughter's efforts "to fulfill her father’s dearest wish, the wish so common among frail, elderly people: to die at home...But it seemed as if all the forces of the health care system were against her — hospitals, nursing homes, home health agencies, insurance companies, and the shifting crosscurrents of public health care spending." On many occasions her dad had been discharged from the hospital to a SNF for rehab. This time she wanted to have him discharged to home, but was unsuccessful and her dad was transferred to a SNF, again.
The blog post illustrates the catch-22 within which Mr. Andrey and his daughter found themselves. The post also explains the recently-released Institute of Medicine report on Dying in America (we blogged about it earlier). Returning to Mr. Andrey's story, the article includes a short biography of his life (including a brief tenure as a child in Vaudeville), his wife's decline from Alzheimer's, his up close and personal...and ongoing...experience with the U.S. health care system, and ends with his final years. He had frequent stays at SNFs because of the inability to secure home health care in a system where there were financial incentives for SNFs but not the same profitability, if you will, for the home health agencies.
Despite all of his daughter's efforts, Mr. Andrey didn't die at home, but in a hospice within a hospital. If you read the entire article, by turns you will be appalled and saddened. If you assign this to your students, there are many opportunities for discussion about the U.S. health care system as well as end of life care in our country.
Friday, October 3, 2014
Yesterday I published a post on assisted dying "tourism" in Switzerland. Following up that story is another story on a related topic. Reported in the Daily Mail Online, Elderly couple to die together by assisted suicide even though they are not ill focuses on a Brussels couple in their late 80s who, despite not being terminally ill, plan to die together because they "fear loneliness if the other one dies first from natural causes" and the couple's 3 adult children have said they would be unable to care for the surviving parent when the first one died. The kids have found a doctor to help on the basis of the parents' "mental anguish constituted the unbearable suffering needed to legally justify euthanasia."
The couple has selected the date and the method of euthanasia. Although double euthanasia may seem novel, theirs will not be the first time this has occurred. However, their request has created something of a stir in the UK, according to the story. The story notes that in Brussels, evidently mental anguish is becoming a more accepted basis for a euthanasia request.
Thanks to Sushil Preet Cheema, one of my elder law concentration students, for sending me the link to this story.
Thursday, October 2, 2014
Naomi Cahn, our colleague at GW Law who frequently alerts us to interesting stories, sent me a note about this recent story from the Washington Post on suicide tourism. Tourism to Switzerland for assisted suicide is growing, often for nonfatal diseases reports on an ongoing study in Switzerland that shows an increases in tourists in the Zurich area seeking assisted suicide.
The study, on "Suicide Tourism", was reported in the Journal of Medical Ethics. The August volume contains the article about the study: Suicide tourism: a pilot study on the Swiss phenomenon. The full article requires purchase (or subscription) but the abstract of the article is available and summarizes the article:
While assisted suicide (AS) is strictly restricted in many countries, it is not clearly regulated by law in Switzerland. This imbalance leads to an influx of people—‘suicide tourists’—coming to Switzerland, mainly to the Canton of Zurich, for the sole purpose of committing suicide. Political debate regarding ‘suicide tourism’ is taking place in many countries. Swiss medicolegal experts are confronted with these cases almost daily, which prompted our scientific investigation of the phenomenon. The present study has three aims: (1) to determine selected details about AS in the study group (age, gender and country of residence of the suicide tourists, the organisation involved, the ingested substance leading to death and any diseases that were the main reason for AS); (2) to find out the countries from which suicide tourists come and to review existing laws in the top three in order to test the hypothesis that suicide tourism leads to the amendment of existing regulations in foreign countries; and (3) to compare our results with those of earlier studies in Zurich. We did a retrospective data analysis of the Zurich Institute of Legal Medicine database on AS of non-Swiss residents in the last 5 years (2008–2012), and internet research for current legislation and political debate in the three foreign countries most concerned. We analysed 611 cases from 31 countries all over the world. Non-terminal conditions such as neurological and rheumatic diseases are increasing among suicide tourists. The unique phenomenon of suicide tourism in Switzerland may indeed result in the amendment or supplementary guidelines to existing regulations in foreign countries.
The Washington Post story discusses some possibilities for individuals seeking assisted suicide when they are not terminal; traveling while they are still able and having a terminal condition but not yet in the terminal phase were two of the reasons mentioned in the story. The Post story was produced by NewScientist and is also available here.
Tourism to Switzerland for assisted suicide is growing, often for nonfatal diseases
Wednesday, September 24, 2014
In the Washington Post, Columnist Michelle Singletary warns that "Reverse Mortgages Must be Understood to Avoid Regrets." One of the points of her column is that reverse mortgages may not be the most cost-effective plan for aging.
I've begun to worry that the problem is bigger than just mortgages. I worry that too many Americans are making aging at home a fetish, rather than a plan. While heading our Elder Protection Clinic at Penn State Dickinson Law for more than ten years, I often had opportunities to work with my students and their clients on various financial issues related to aging, including reverse mortgages. While I have certainly seen reverse mortgages alleviate specific needs for older adults, I've more often seen that the struggle to stay in the home is, arguably, misguided. What the older person is really hoping for is "not to age any more than necessary." In other words, not to "need" care. Hoping is different than planning.
Some of the wisest people I've known have made "aging in place" a fluid concept, rather than "home"-based. I'm thinking of one of my long influences, Mrs. Parker, who was a salty cowgirl. She'd grown up on horses in the Southwest and married the foreman of one of the biggest cattle ranches in Arizona. One of my favorite stories was about the Parkers' honeymoon, when they rode a string of fresh horses from northern to southern Arizona, breaking the colts along the way.
When ranching was no longer a way of life, the Parkers ran a riding school. Mrs. Parker nominally taught children how to ride horses -- but really she was constantly teaching about life. How well you actually rode the horses was often incidental to her lessons.
One of the things I noticed was that Mrs. Parker planned "aging" for herself and her husband, who was several years older. She knew he was very tied to place, and so they stayed in their home, a modern, but narrow "mobile home" (a/k/a "trailer") for many years beyond what their riding school income required. After his passing, she downsized, from the trailer on 10+ acres of horse-property complete with barns, pastures and riding arenas, to an easy-care home, with a small pasture for a few "old friends."
And then she did the most amazing thing of all. She carefully chose a distant relative as the most trustworthy person from among her large circle of friends and family to serve as her "agent." Mrs. Parker granted this individual Power of Attorney, with an express paragraph authorizing her agent the power to choose a personal care home or other long-term care setting if that became necessary. Which it did. Mrs. Parker lived a very long time as a widow. On one of my last visits with her, she said, poignantly, "I think I remember that I used to know you."
Mrs. Parker's transition from phase to phase was financed by downsizing and by selling their property and her "retirement" home in an orderly way, without a loss of dignity and without a crisis.