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.
Sunday, September 21, 2014
A more positive way perhaps to word the question might be "how old do you want to live to be?" The Atlantic ran an article that phrased it a bit differently, but still focused on at what age is long lived enough? The author, Ezekiel Emanuel, serves as Director, Clinical Bioethics Department, National Institutes of Health & chairs U. of Pa. Department of Medical Ethics & Health Policy. Why I Hope to Die at 75 appeared in the September 17, 2014 issue. Dr. Emanuel writes about his decision that 75 is his "magic number" and how others have tried to convince him that he should change his mind on this. Why 75? He explains
By the time I reach 75, I will have lived a complete life. I will have loved and been loved. My children will be grown and in the midst of their own rich lives. I will have seen my grandchildren born and beginning their lives. I will have pursued my life’s projects and made whatever contributions, important or not, I am going to make. And hopefully, I will not have too many mental and physical limitations. Dying at 75 will not be a tragedy. Indeed, I plan to have my memorial service before I die. And I don’t want any crying or wailing, but a warm gathering filled with fun reminiscences, stories of my awkwardness, and celebrations of a good life. After I die, my survivors can have their own memorial service if they want—that is not my business.
He makes it clear that he is not supporting physician-aided dying and if he lives past 75, so be it-he's not going to take steps to end his life. Where his wish comes into play is the type of health care he will consent to receiving once he hits that age. He argues that more years don't necessarily mean good years, noting that seventy is NOT the "new fifty". Although older folks may be more active or in better health, there is still a rise in disability which he points to as a reason that the focus shouldn't just be on quantity. He quotes another expert, "health care hasn’t slowed the aging process so much as it has slowed the dying process." The fact of living longer but more incapacitated holds no appeal for him.
Dr. Emanuel looks at examples of health care issues, such as stroke and dementia, using statistics and real stories to illustrate his point. Regarding Alzheimer's, after citing to statistics on the correlation between aging and dementia, he offers
[e]ven if we aren’t demented, our mental functioning deteriorates as we grow older. Age-associated declines in mental-processing speed, working and long-term memory, and problem-solving are well established. Conversely, distractibility increases. We cannot focus and stay with a project as well as we could when we were young. As we move slower with age, we also think slower.
He also discusses the correlation between age and creativity-an inverse relationship it seems--the older you are, the less creative, unless you are one of those rare individuals (we all know of someone quite famous who did something remarkably creative at an advanced age---think Grandma Moses).
As we age, to accommodate our "current selves" we constrict how we live, and as Dr. Emanuel describes, we find ourselves "aspiring to and doing less and less". Yet we each enjoy different things. This calls to mind some of the arguments we hear about the use of substituted judgment in health care/end of life decision-making. We each define a quality of life in different ways, and Dr. Emanuel recognizes that his view may be a bit harsh.
Yet, he contends, it is not about the elder individual racking up the years. There is a burden on the family to be considered, and he says "I will leave aside the very real and oppressive financial and caregiving burdens that many, if not most, adults in the so-called sandwich generation are now experiencing, caught between the care of children and parents. Our living too long places real emotional weights on our progeny."
Back to his plan when he reaches 75. As far as health care, here is his plan: to "stop getting any regular preventive tests, screenings, or interventions ... [and] accept only palliative—not curative—treatments if ... suffering pain or other disability." He makes it clear that this is his view and he respects the views of others that are contrary to his.
This article provides a wealth of topics for discussions with our students and is worthwhile reading, even though you may hold a contrary view to Dr. Emanuel.
Seems like there have been several interesting developments in the past few weeks regarding end of life decision making. Thanks again to Charlie Sabatino, Executive Director of the ABA Commission on Law & Aging. former NAELA president, national expert on end of life issues and all around great guy, for sending me an email about the series run on WNYC public radio. The station ran a 3 part series on "death beds" The first, Death Beds: Terminally Ill, But Constantly Hospitalized aired on September 8, 2014. The second, Death Beds: Too Little, Too Late for Many New Yorkers Seeking Hospice aired the next day, and the third, Death Beds: Living Wills Slowly Take Root aired on September 10, 2014.
Each includes the audio recording as well as the print story. Worth a listen!
Thursday, September 18, 2014
The Institute of Medicine of the National Academies has released a new report on end of life issues. The report, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life was released on September 17, 2014. The report brief offers an explanation of the importance of this new survey, including the sheer numbers of American elders who are living with some limitations on ADLs, chronic illness, cognitive issues and more. As well the report points to issues with the health care system, including problems in accessing care, a lack of palliative care specialists and knowledge about end of life care, and a health care system that works out of sync, with economic incentives. The brief concludes with a call for "person-centered, family-oriented approach that honors individual preferences and promotes quality of life through the end of life [as] ... a national priority." The report is "a comprehensive assessment of the knowledge gaps, structural problems, and financial disincentives that hamper delivery of optimal care and makes cross-sectoral recommendations to achieve compassionate, affordable, sustainable, and effective care for all Americans."
The website also includes a link to key findings, core components, an infographic and a quiz (5 questions) which is suitable for use in class.
Wednesday, September 17, 2014
(Thanks to Judy Stein, Executive Director for the Center for Medicare Advocacy (CMA) for sharing this).