France recently confronted its version of America’s 2005 Schiavo case (in which the Florida Supreme Court upheld a spouse’s determination to end life support to a permanently unconscious patient despite the patient’s parents’ objections). In 2014, France’s Conseil d’Etat ruled that artificial nutrition and hydration (ANH) could be withdrawn from a permanently vegetative patient based on oral statements that the patient had made, while competent, indicating unwillingness to be medically sustained in such a condition. The patient’s objecting parents then sought a declaration from the European Court of Human Rights (ECHR) that such termination of life support would violate the European Convention on Human Rights. On June 5, 2015, the ECHR rejected the objecting parents’ contention, finding that France’s approach met human rights standards both in the process and the criteria followed by medical personnel in deciding to end life support. Lambert v. France, #46043/14 (ECHR 2015).
Vincent Lambert, then 32 years old, was grievously injured in a 2008 traffic accident. He suffered massive brain trauma and was hospitalized for the next 7 years at Reims University Hospital. His precise medical status was initially uncertain. In July 2011, a medical evaluation found him to be “minimally conscious plus.” Over the next year and a half, he underwent 87 speech therapy sessions which failed to establish any code of communication between Mr. Lambert and his surroundings. In early 2013, the attending physician, Dr. Kariger, initiated a process to review Mr. Lambert’s condition and to determine whether the ANH sustaining Mr. Lambert should be withdrawn.
The process that followed was extensive. During 2013, Dr. Kariger consulted with 6 physicians concerning the patient’s mental status and held 2 family meetings at which Mr. Lambert’s wife, Rachel, his parents, and 8 siblings were present. In January 2014, Dr. Kariger announced his determination to end artificial nutrition and reduce hydration. Dr. Kariger’s written report explained that Mr. Lambert had become permanently unaware of his environment and, according to accounts of Mr. Lambert’s prior oral expressions, he would not wish to be medically sustained in such a debilitated condition. Five of the six medical consultants agreed, as did the patient’s wife and 6 of his 8 siblings.
On Monday Cassandra C. was sent home from the hospital. Her cancer is in remission after responding well to treatments. Many will recall that those treatments were forced on Cassandra against her wishes and those of her mother. Back in January, the Connecticut Supreme Court issued a two-page order agreeing with state officials that Cassandra, at seventeen years three months, should be compelled to undergo chemotherapy to treat her Hodgkin’s Lymphoma.
Mr. Johnson gave the impression that a minor should never be permitted to make such a medical decision, while Dr. Caplan at least implied that his conclusion might be different if the refusal was based on religious beliefs. Then you have a commentator in The Economist who came to the exact opposite conclusion. He expressed concerns about Cassandra’s liberty and the rights of her mother to make decisions on her behalf.
This week, the Texas Legislature considered restoring to pregnant women a right every other adult Texan already enjoys: the right to make health-care treatment decisions in an advance directive or through the next-of-kin who speaks for them.
House Bill 3183 would eliminate all vestiges of the “pregnancy exclusion” from Texas’ Advance Directives Act. If it passes, the bill would remove the basis on which a Fort Worth hospital in 2013 kept brain-dead and pregnant Marlise Muñoz on life support for two months. This was done despite her husband’s insistence that his wife would not want to be hooked up to machines under those circumstances.
Eventually, a trial court agreed with her husband and declared that the pregnancy exclusion and the entire Advance Directives Act did not apply to a patient once she had died. That was only after Marlise Muñoz’s family had to endure the unimaginable pain of watching her corpse deteriorate before their eyes. Little wonder that they support “Marlise’s Law” and were in Austin to testify in support of the bill. […]
Guest Post by Norman L. Cantor Professor of Law and Justice Nathan L. Jacobs Scholar Emeritus Rutgers School of Law – Newark
The first signs of my friend Gertie’s descent into dementia were mild — confusion about days of the week and memory loss about recent events. These were troubling but understandable phenomena in my then 84 year-old friend. Aging inevitably entails some cognitive decline. Over time, though, her symptoms of mental deterioration worsened — disinterest in pursuits like reading and listening to music that had once occupied and entertained her, forgetting not just long-time friends, but even her devoted husband who had died years earlier, and obsessive repetition of certain thoughts and phrases. Now 89, Gertie barely recognizes the devoted caregivers around her. She cannot recall her distant or recent past, she no longer knows who or where she is. Gertie remains physically tenacious, with no life-threatening maladies. While dependent on assistance for dressing, eating, ambulating, bathing, and toileting, Gertie may continue in her mentally detached and dysfunctional limbo for years more.
I am determined to avoid Gertie’s fate. So I am now contemplating how to respond if and when I am diagnosed with early Alzheimer’s. My prime object is to avoid the precipitous mental deterioration accompanying advanced Alzheimer’s or similar dementia. My aversion is not based on prospective emotional distress and suffering. While some people in sharp mental decline may experience anxiety, frustration, embarrassment, confusion, or agitation, some, like Gertie, seem placid and indifferent to their debilitation. My aversion is grounded rather in my abhorrence of reduced mental function to a degree I deem intolerably demeaning. Such a status is unacceptable to me whether or not I would experience distress in a future demented state.
Keep in mind that I spent my work career as an academic. My personal satisfaction and self-image have flowed largely from intellectual functions like observation, reflection, and analysis. Inability to understand and process information is, for me, an intolerably undignified status. This preoccupation with future mental dysfunction reflects unwillingness to soil the lifetime image to be left with my survivors. I care mightily about posthumous recollections of my personality and I seek to shape my life trajectory (including a dying process) in a way that preserves a modicum of dignity. Continue reading →
Terri Schiavo died 10 years ago today — not long after her feeding tube was removed by order of a Florida judge acting at the request of Schiavo’s husband that his wife be allowed to die.
She was 41 and had spent nearly half her life in a vegetative state after suffering a cardiac arrest in 1990, causing a severe lack of oxygen and brain damage. The highly publicized legal case surrounding her husband’s plea not to keep her artificially alive roused debates across the world and at the U.S. Supreme Court.
What is Schiavo’s legacy? What have we since learned about brain function, vegetative states, and how we should talk about death — long before we’re gone?
Allison M. Whelan, J.D.
Senior Fellow, Center for Biotechnology & Global Health Policy, University of California, Irvine School of Law
On March 12, 2015, Texas Representative Elliot Naishtat (Austin) filed HB 3183, which would repeal the Texas law that currently prohibits pregnant women from exercising their advance directives. The existing statute includes the following language: “I understand that under Texas law this directive has no effect if I have been diagnosed as pregnant.” The bill strikes this sentence and would allow health care providers and medical institutions to honor a woman’s wishes about end-of-life care.
The bill is known as “Marlise’s Law,” named for Marlise Muñoz of Fort Worth, Texas, who was kept on mechanical support for two months after she was declared brain dead in 2013. Muñoz collapsed in her home in November 2013 when she was 14 weeks pregnant. She was declared brain dead two days later but John Peter Smith Hospital said it was legally prevented from removing life support because she was pregnant. Continue reading →
Brittany Maynard’s highly publicized decision to end her life under Oregon’s Death With Dignity law has given a new face to the American right to die movement. It is that of a young, attractive, athletic newlywed, who would not have considered herself as having a stake in the movement until the day she learned a brain tumor was the cause of her severe headaches. She was terminally ill and faced a future of six months of increasing pain, debilitation, and severe seizures before dying.
A video of Maynard’s story produced by the non-profit advocacy organization Compassion and Choices has reached many millions of viewers. Extended coverage of her decision-making process by People Magazine resulted in record numbers of hits to the publication’s website. During her illness, Maynard moved from California to Oregon and on November 1, 2014 took barbiturates to end her life. In her memory, her husband and mother have become prominent activists in the effort to legalize physician aid-in-dying (PAD). […]
Time is running out on fixing the way we die. As readers of this blog know, the courts first declared a right to refuse unwanted life-sustaining treatment in the 1976 Quinlan case. Nearly 4 decades later, too many people are still burdened with treatments they don’t want, can’t get support for care at home, and are dying without good relief of pain and suffering. So it was no surprise that the highest court in Canada finally threw in the towel. In its Feb. 6 opinion in Carter v. Canada, the court found people still “suffering intolerably as a result of a grievous and irremediable medical condition.” The court thus recognized a right to physician aid in dying. Canada now has a year to set up a system that will permit the practice while protecting the vulnerable from abuse.
This new blog post by Greg Curfman, Holly Fernandez Lynch and I. Glenn Cohen appears on the Health Affairs Blog:
Everywhere we look, we see the tremendous impact of new legal developments—whether regulatory or statutory, federal or state—on health and health care. These topics range from insurance to intellectual property to religion to professionalism to civil rights. They remain among the most important questions facing Americans today.
This post is the first in a series that will stem from the Third Annual Health Law Year in P/Review event to be held at Harvard Law School on Friday, January 30, 2015. The conference, which is free and open to the public, brings together leading experts to review major developments in health law over the previous year, and preview what is to come.
Read the full post here,and register for the Third Annual Health Law Year in P/Review for free here.
A couple weeks ago the Financial Times ran a book review (behind a pay wall) by Mark Vandevelde of Cass Sunstein’s “Valuing Life: Humanizing the Regulatory State” (linked here). The book review carries the tagline “Beware the paternalist in libertarian garb.” I happen to have read the book and, since the Financial Times beat me to the job of reviewing, I thought I would use the holiday lull to review the review.
In short, for reasons I explain in perhaps too much detail below, the review misses the mark in a way foreshadowed by the tagline. The review takes issue with Sunstein the libertarian paternalist, the Sunstein who advocated a class of choice-respecting regulations in his book “Nudge.” But “Valuing Life” is not “Nudge”; it is about the nitty-gritty of how we quantify the costs and benefits of all sorts of regulations, not the desirability of any particular sort of regulation (or even regulation in general). On the latter topic Sunstein has much to say in his book, Vandevelde’s review not so much.
Whether it be a social media campaign to convince a company to provide an experimental anti-viral drug to a young cancer patient suffering from a life-threatening infection or the debate over appropriate treatment for high-profile Ebola cases, access to potentially life-saving but unapproved medications remains a controversial issue. Two recent articles, published on the same day, illustrate the difficulty of trying to balance desperate patients’ willingness to try unproven therapies with the very real concerns faced by manufacturers undergoing the drug approval process. The first was a Kaiser Health News article describing the passage of “Right to Try” laws in five states. The second was a brief note in the Los Angeles Business Journal that shares of CytRx Corporation, a biopharmaceutical R&D company, had fallen 9% after the company announced that the FDA had placed a partial clinical hold on its clinical trials after a patient’s death.
Right to Try laws are designed to give patients who have exhausted all other treatment options the right to access investigational medications, devices, and biological products that have met Phase I safety milestones. Right to Try legislation has been enacted in Colorado, Louisiana, Michigan and Missouri, and voters recently approved it by initiative in Arizona. The laws are based on model legislation drafted by the Goldwater Institute, which issued a detailed report on the issue in February 2014. While prohibiting states from blocking patient access to such medications, however, the model legislation does not require manufacturers to provide the products, nor does it require insurance companies to cover the costs.Continue reading →
The news media has been reporting on the role and means of one’s own death more frequently recently, buoyed along by manifestos (Ezekiel Emanuel’s “Why I Hope to Die at 75”, Brittany Maynard’s “Compassion and Choices” Campaign) that have caught the attention of a diverse audience. These declarations are perhaps more connected to one another than we may think.
Just last week on this blog, Lauren Taylor authored an excellent post on new public figure Brittany Maynard – the terminally ill 29-year old woman who relocated to Oregon for access to its death with dignity law, and to end her life with a prescription for a fatal medication. Maynard’s story seems to have struck a chord in part due to her youth. She is the youngest advocate currently featured on the website of Compassion and Choices, the largest organization advocating for end-of-life options in the US (the next youngest is 57 years old). She is also a well-educated, well-traveled, well-spoken individual, supported in her choices by her immediate family and physician. When Maynard states that the remainder of her life, if allowed to come to a natural end as a result of her cancer and without the help of medical intervention, will not be of value (and will actually be of great disvalue) to her, we are inclined to believe her evaluation – and perhaps even the normative implications that Maynard claims should follow.
Another public figure recently claimed that a particular part of life is not of (sufficient) value to him in order to keep living it, either. In September, Dr. Ezekiel Emanuel, director of the Clinical Bioethics Department at the U.S. National Institutes of Health and head of the Department of Medical Ethics & Health Policy at the University of Pennsylvania, published his essay “Why I Hope to Die at 75” in The Atlantic. The part of life he wishes to avoid? An old age marred by disability, functional loss, and relinquishment of the values and expectations of a younger individual. He proposes to adopt (for himself only) active rejection of life-sustaining and life-prolonging heath care, beginning at age 75. The effect? Ideally, death from infection untreated by antibiotics — it’s “quick and painless.” Continue reading →
29-year old Brittany Maynard has captured national headlines this week by publicly announcing her intention to end her own life on November 1st. She did so in an effort to raise funds for and awareness of the non-profit Compassion and Choices.
Maynard was diagnosed earlier this year with an aggressive brain cancer and has moved to Oregon for access to its death with dignity laws. Those laws have allowed her to be prescribed a fatal dose of medication by a physician to be taken at the time and place of her choosing. Maynard sees the prescription as a means of avoiding a potentially long, painful and de-humanizing decline in her health.
In light of Maynard’s case, virtually every major media outlet has featured a bit of medical ethics this week. Maynard’s own voice first appeared in People Magazine, announcing her intention to end her own life. Therein, Maynard is clear that she does not consider herself to be planning for suicide. Continue reading →
Under HIPAA, patients’ spouses and other family members have certain rights to access health information. In an important guidance document in the wake of United States v. Windsor, the Office for Civil Rights (OCR) at HHS has clarified that “spouse” under HIPAA refers to legally married same-sex spouses, even if the individual is receiving services in a jurisdiction not recognizing same-sex marriage. Continue reading →
…we think it [execution] is totally incompatible with the role of the doctor. A doctor is about healing. A doctor is about soothing pain. A doctor is not meant to be conscripted by the state to make what is the involuntary killing of another person look as though it’s a medical procedure, like getting your teeth pulled or putting your dog to sleep. It’s kabuki theater, Rachel, and we think doctors should stand up. Whatever your position is on capital punishment, it’s wrong to make this procedure look like medicine. That’s not what it is. […]
Yesterday JAMA published a new perspective I co-wrote with Bob Truog and Mark Rockoff “Physicians, Medical Ethics, and Execution by Lethal Injection“. In that article we make the case that the recommendations coming out of the Oklahoma botched lethal injection executions to require physician involvement would force physicians into an untenable medical ethical position. We also argue that it supports a kind of kabuki theater of medicalization, where execution becomes normalized.
Now comes a news report of a Utah lawmaker pushing to give those set to be executed the option of firing squad which he views as more humane than lethal injection. Many people will no doubt recoil at this notion. But here is my intentionally provocative question (and this is on my behalf not my co-authors): If you are in favor of capital punishment, wouldn’t a single close range shot to the head as a form of execution be, in some ways, more defensible than lethal injection? If you recoil at the notion of this being a way of doing execution, have you perhaps fallen for the kabuki theater of medicalization? Why not choose a method of execution that is more honest about the gravity (and perhaps the horror) of what we are doing rather than present something as somewhere on a continuum with sedation?
In the wake of the recent botched execution by lethal injection in Oklahoma, however, a group of eminent legal professionals known as the Death Penalty Committee of The Constitution Project has published a sweeping set of 39 recommendations that not only tinker with, but hope to fix, the multitude of problems that affect this method of capital punishment.
Many of the recommendations this committee makes with regard to legal and administrative reforms appear worthwhile and reasonable. Their final recommendation, however, concerns the role of the medical profession in performing lethal injection. It states: “Jurisdictions should ensure that qualified medical personnel are present at executions and responsible for all medically-related elements of executions.”
In particular, the recommendation specifies that “Execution team members…are licensed, practicing doctors, nurses or emergency medical technicians who are responsible for performing functions in their day-to-day practice that are similar to those they will perform at the execution.” Regardless of this committee’s recommendations, physician participation in capital punishment is an ethical dilemma that the profession of medicine must address.
Art Caplan has coauthored a new piece in JAMA on problems with Belgium’s new law allowing terminally-ill children and their families to choose euthanasia. From the article:
The Belgian pediatric euthanasia law seeks to respect the moral status of children as agents who possess the nascent capacity for self-determination. Specifically, the law requires the medical team to demonstrate a patient has the “capacity for discernment,” indicating that he or she understands the consequences of a choice for euthanasia.
What the law does not consider, however, is that adults choose euthanasia for reasons that go beyond pain. For adults, the decision to end their life can be based upon the fear of a loss of control, not wanting to burden others, or the desire not to spend their final days of life fully sedated. These desires might be supported by the experience they have had witnessing a loved one express a loss of dignity or because they understand what terminal sedation is and wish to refuse it. Children, however, lack the intellectual capacity to develop a sophisticated preference against palliative interventions of last resort. Instead, in the case of the new Belgian law, children seem to be asked to choose between unbearable suffering on the one hand and death on the other.
This possibility causes the Belgian euthanasia law to fall short of the standard required for valid assent. The criterion related to the “capacity for discernment” runs the risk of ignoring the fact that children and adolescents lack the experiential knowledge and sense of self that adults often invoke—rightly or wrongly—at the end of their lives.
Dr. Jeffrey Ecker, a noted fetal medicine specialist, has an excellent piece on the Munoz case in Texas in a recent NEJM article (“Death in Pregnancy—An American Tragedy”). He shares the widespread view that brain dead pregnant women should not be maintained over the father or family’s objections. He does, however, suggest that maintenance may occur with family consent to enable the fetus be born with the best chance of survival.
The burden of his comment is on legal issues and rights. Because Texas recognizes brain death as legal death, the hospital had acted inappropriately when it relied on the Texas advance directive statute, which limits advance directives when a woman is pregnant, to maintain her over her husband’s wishes. The court ruled that since Ms Munoz was brain dead, the advance directive limitation which applies only to patients who are still alive, did not apply to a pregnant patient who was dead under cardiopulmonary or brain death criteria for death. His comment deserves laurels for its clear presentation of the statutory conflict and its resolution.
Dr. Ecker, however, like many other commentators, runs into trouble when he says that the hospital’s actions in the Munoz case, even if supported by statute are “a wrongful usurpation of the rights of individuals, in this case … women.” The problem is his the assumption that there is or should be a constitutional or legal right at Time 1 when competent to issue a legally binding directive at Time 2 when the maker is incompetent and indeed may have a different set of interests or none at all.
But there is no constitutional right to make a directive at Time 1 that binds at Time 2. Justice Sandra O’Connor concurring in the outcome in Cruzan mentioned a possible 14th Amendment right to appoint a health care proxy to make a decision at Time 2, but no other justice joined her. Indeed, a constitutional right to make future directives that bind oneself directly or through an agent has no constitutional precedent and poses many problems.