Art Caplan on “Pediatric Euthanasia in Belgium: Disturbing Developments”

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.

Read the full article.

It’s Doctors’ Duty to Promote Gun Safety With Patients

Art Caplan has a new opinion piece up at Medscape: “It’s Doctors’ Duty to Promote Gun Safety With Patients.” From the article:

There is a huge problem with guns in the United States, and there are many things that public health can do, and many things that doctors should do to try to minimize the threats that guns pose to children, families, and all of us. One of the leading problems with guns is that we don’t educate children to know what to do when they find a gun or see a gun. So, if a 5- or 6-year-old sees a gun, we need a program that teaches that child that if you see a gun, walk away, get out of the area, and then tell an adult. That is a public health program. It’s something that school nurses could do. It’s something that pediatricians should talk about with their child patients. It’s something that families should hear about. We need a campaign. Vivek Murthy, the Surgeon General candidate, thinks that it is an appropriate thing to do. Apparently, the NRA doesn’t.

You can watch or read the full piece on the Medscape website (access requires a login and password, but registration is free).

Art Caplan: #SaveJosh? Maybe, but What about the Rest?

Art Caplan has a new opinion piece up at MSNBC on the #SaveJosh social campaign that is seeking to get a young cancer patient access to an experimental drug under compassionate use policies. From the article:

If Josh were 67 instead of 7, he would already be out of luck. Those who are not very cute get less attention in their pursuit of unproven drugs. If Josh had parents who did not understand how to use social media, he would already be out of luck. If Josh did not have sharp, well-connected doctors, he would already be out of luck. But he is not in any of these categories, so he may yet get the drug.

All of which is to say, this is no way to handle requests from desperate patients, parents or families to try to save themselves or their loved ones from imminent death by giving them access to unproven, experimental drugs. We need an equitable compassionate use policy for everyone in this country.

Read the full article.

Caplan: Three-Parent Babies Are an Ethical Choice

Art Caplan has a new op-ed out on the three-parent baby issue.  Here’s an excerpt:

In my view, trying the technique to fix a terrible disease even with risks of failure makes ethical sense. The FDA may ask for more studies in monkeys, but that really wont settle the safety issue in humans. Given the severity of mitochondrial diseases it is worth trying the technique.

The big worry is not so much safety, but where will allowing this form of genetic engineering lead. If we let doctors try to repair defective eggs today, who is to say they won’t be trying to make superbabies or designer babies tomorrow by transferring other genes into eggs?

The answer to that is that how far we go in engineering future generations through genetic manipulations is up to us. We can enact laws and treaties that say yes to gene therapies but no to cosmetic genetic engineering. Holding families hostage by saying they cannot try to repair broken genes to treat diseases because we worry that we cannot put steps or handrails on the slippery slope to designer babies seems wrong to me.

Take a look here.

Blogger Twitter Round-Up

By Parker Davis

This week’s twitter round up features a variety of topics from our contributors, from the chemical imbalance theory to infant mortality rates and IVF conception rates.

Frank Pasquale tweeted an article from The Star about the shift of the chemical imbalance theory related to mental illness from an agreed upon medical principle to simply another tactic used by marketers for pharmaceutical companies.

Art Caplan shared two updates regarding current rates of flu vaccination. The first was a retweet of a map graphic showing the “rate of nonmedical vaccine exemptions by state,” and the second was an update based on the records of the Immunization Action Coalition regarding the “now more than 400 organizations with mandatory flu” vaccines for health care workers.

Amitabh Chandra tweeted an update of the infant mortality rates of Pakistan versus India: “In 1960, India and Pakistan had the same infant mortality rate (155/1000). Today, Pakistan’s is 71/1000, which is what India had in 1995.” He also tweeted a Wikipedia article regarding infant mortality driving child mortality.

Stephen Latham tweeted a link to his blog reporting on “US IVF Conceptions at All-time High” which discusses the potential effects of not insuring people for assisted reproduction and encouraging implantations of multiple embryos.

Richard Epstein tweeted several times about the contraceptive mandate including links to the John Batchelor Show online.

Twitter Round-Up 2/12

This week’s twitter round up features a variety of topics from our contributors from the hunger crisis in America to the contraceptive mandate and the Lancet/Oslo Commission on Global Governance for Health.

Frank Pasquale tweeted an article from MSNBC about the millions of residents of New York suffering from hunger and the American hunger crisis overall (2/12).

Art Caplan was a guest of Southern California Public Radio, where he discussed the proposal in Rhode Island to mandate flu shots for children from 6 months to 5 years enrolled in preschool or daycare.

In response to a New York Times article about Medicaid expansion, Amitabh Chandra tweeted in support of allowing Medicaid beneficiaries to buy insurance on an exchange.

Stephen Latham tweeted a link to his blog responding to the Lancet/Oslo Commission on Global Governance for Health.

Richard Epstein tweeted his article in “Defining Ideas” about the contraceptive mandate and his view on the strength of the classical liberal case versus the religious case against the law.

Art Caplan: Mandating Flu Shots Is the Moral Choice

Art Caplan has a new piece at NBC News online arguing that the Rhode Island Department of Health is right to propose a new policy mandating that “all children between 6 months and 5 years of age would have to be vaccinated against the flu before entering daycare or preschool.” From the piece:

Not only is the ACLU inexcusably wrong about the value of flu vaccination for young children, it is way off the mark on the issue of liberty. The Rhode Island law is not about protecting kids. It is trying to prevent infected kids from killing or making other kids sick, especially those with asthma or immune diseases. It is trying to prevent killing grandma by infecting her, killing pregnant women’s fetuses or striking dead the neighbor who is getting chemotherapy or is post an organ-transplant who encounters an infected baby or child at the supermarket, train station or movie theater. Continue reading

Art Caplan on “Accepting Brain Death”

Art Caplan has a new piece, co-authored with David C. Magnus, Ph.D. and Benjamin S. Wilfond, M.D., in the NEJM, addressing the legal and medical reasons for accepting brain death as death. From the article:

Over the past several decades, brain death has become well entrenched as a legal and medical definition of death. It is clearly defined by the neurologic community [...], standards for diagnosis are in place, and it is established in law. It has become the primary basis of organ-procurement policy for transplantation. Ironically, the other standard for defining death, irreversible cessation of circulation, lacks consensus about diagnosis.

The concept of brain death has periodically come under criticism.4  Continue reading

Art Caplan: Pregnant and dead in Texas: A bad law, badly interpreted

Art Caplan has published a new op-ed piece in the LA Times addressing the case of Marlise Munoz, the brain-dead, pregnant Texas woman from whom doctors are refusing to withdraw “life-sustaining treatment” despite her family’s wishes. The hospital where Munoz argues that it cannot withdraw such treatment because of a Texas law forbidding the removal of such treatments from a pregnant patient. Caplan argues:

Given the clarity of this statutory language, it is hardly surprising courts have determined it inapplicable after a determination of death. For example, in a similar case in Houston, a Texas court ordered a hospital to continue treatment for a comatose Tammy Martin, who was then 15 weeks pregnant. But the court reversed the order, a few weeks later, once Martin had been declared dead.

Not only does the Texas law not apply, it is almost certainly unconstitutional.  Continue reading

Art Caplan: ‘Life support’ is wrong for brain-dead pregnant woman

Art Caplan has a new piece at NBC News online weighing in on the case of Marlise Munoz, the pregnant Texas woman who was declared brain dead by doctors several weeks ago and yet is being kept on “‘life support’ technology” against her family’s wishes. Based on their reading of a Texas law that bans the withdrawal of such machines in cases where the patient is pregnant — regardless of advance directives or the family’s wishes — the hospital claims it has no choice. Caplan argues:

The hospital, however, is very confused. If Marlise is dead, then the Texas law does not apply. Even the legislature of Texas cannot compel continued use of medical interventions on a dead body. “Life support” technology need not be continued if the patient is dead. Erick Munoz made that case in his lawsuit against John Peter Smith Hospital.

“In fact, Marlise cannot possibly be a ‘pregnant patient’ — Marlise is dead,” the suit says. “To further conduct surgical procedures on a deceased body is nothing short of outrageous.”

But even if Marlise were alive — assuming she has either a terminal or irreversible condition — the hospital has the choice to do the right thing ethically, follow the wishes of her husband and family and stop intervening.

Read the full article.

 

Art Caplan on Brain Death, Death, and the McMath Case

Art Caplan has weighed in again, in a piece at Time.com co-authored with David Magnus, on the ongoing McMath case, in which 13-year-old Jahi McMath’s parents are fighting to keep her on life-support despite doctors’ diagnosis of brain death. From the article:

Concepts matter in medicine. This could not be more obvious than in the utter confusion on display over the concepts of ‘brain death’ and ‘life support technology’ that has resulted in two dead bodies being kept on ventilator support in California and Texas.  Continue reading

Defining mental illnesses: can values and objectivity get along?

Petrie-Flom Student Fellow Michael J. Young has co-authored a new article with Dominic Sisti (Department of Medical Ethics & Health Policy, Perelman School of Medicine, University of Pennsylvania) and Bill of Health contributor Art Caplan (Division of Medical Ethics, NYU Langone Medical Center) in BMC Psychiatry on the ethical implications of efforts to base mental health diagnoses in biological causes.

From the abstract: Continue reading

Art Caplan: Girl’s tragic case can’t change reality of brain death

Art Caplan has weighed in, with a piece for NBC News online, on the debate over the case of a thirteen-year-old California girl whose parents are suing to keep her on life support despite the fact that doctors have pronounced her brain dead. From the piece:

This case is so sad it is almost beyond description. But that fact should not be a reason to take the view that we don’t know what to do when someone is pronounced brain dead.

Brain dead is dead. It is as reliable a way to determine death as declaring that a person’s heart has forever stopped beating. In fact, due to the strict tests and procedures that have to be followed to determine brain death, it is probably even more error-free than pronouncing someone dead due to cardiac failure.

Brain death is not a coma. People wake up from comas—they still have brain activity. Brain death is not a vegetative state. People in a vegetative state still have some, minimal brain activity. Those who are brain dead have lost all brain activity except the random firing of a few cells. They will not come back.

For more, read the full piece.

Art Caplan on Mandela’s AIDS legacy of silence and courage

Art Caplan has a new piece over at NBC News online on Nelson Mandela’s AIDS legacy:

[...] It had been an enormous mistake to ignore the epidemic, made even worse by installing an AIDS denialist as his favored successor.

In 2003 Mandela began to speak out plainly and forcefully about AIDS. And he acted. He created a foundation to fight HIV/AIDS, the Nelson Mandela Foundation, and began a fundraising campaign to support HIV prevention and public health efforts called 46664, his identification number when he was imprisoned by the apartheid government on Robben Island. For the rest of his life he urged people to talk about HIV/AIDS “to make it appear like a normal illness.” And he used his reputation to make HIV prevention and AIDS treatment an international issue. In his retirement, he put AIDS at the top of his personal agenda.

[...]

Mandela vigorously took on critics, speaking courageously about AIDS and the importance of using the best science and public health knowledge to defeat it. Our greatest ethical leaders like Mandela are never more instructive than when we learn not just from their triumphs, but also from how they recognize and respond to a mistake.

Read the full article.

Art Caplan: When Religion Trumps Medicine

Cross-post from bioethics.net

Imagine that you were in a terrible car accident and suffered a huge loss of blood. An ambulance comes and takes you, dazed and in pain, to the only hospital within a hundred mile area of the accident. That hospital happens to be affiliated with the Jehovah’s Witnesses. Everything at the hospital is state of the art. The doctors and nurses are all well trained. There is only one hitch in terms of your medical care. You need blood transfusions or you are going to die. The hospital does not have a blood bank. Nor does it offer transfusions. They believe blood transfusion violates their faith. The doctor suggests you be given a lot of fluids to maintain your ‘volume’ and that you hope for the best. Wouldn’t you demand that the Witness affiliated hospital put aside their faith-based beliefs and do what is medically indicated and either provide a transfusion or try to arrange one? If you did not recover would you expect your family to accept the fact that your death could easily have been prevented but for the hospital’s decision to put theology over medicine?

Continue reading

Twitter Round-Up 11/20

In this Twitter round-up, many of our contributors shared news about end-of-life care and decision making. Some also continued to share their own thoughts, and those of others, about the Affordable Care Act.

Amitabh Chandra posted a NY Times article entitled “How Doctors Die.” The piece discusses some of the contrasts, which some might regard as disparities, between the quality of death experienced by laypeople and that of doctors and their families. (11/20)

Richard Epstein tweeted his blog post about some of the ethical quandaries that still plague “Obamacare.” In “Obamacare’s Death Spiral,” he addresses what he views as constitutional and social complications associated with the ACA. (11/18)

Amitabh Chandra tweeted a brief Wall Street Journal blog post titled “So Many Patients– But Not Enough Doctors to Treat Them!” The author discusses an impending doctor shortage being worsened by the lack of federal funds being appropriated to medical training, and the failure of the ACA to address the problem. (11/18)

Art Caplan posted the NPR story, “Seeking Lung Donors After At Home Death.” Many people who wish to be organ donors actually never fulfill this duty if they die outside the hospital. New advances in lung transplantation, however, may cause this to change.  (11/17)

Frank Pasquale tweeted a CBS News article detailing the success of the first few weeks of Medicaid open-enrollment. 440,000 people in 10 states have signed up. (11/12)

Art Caplan touched on the issue of end-of-life care as well this week, when he tweeted the CNN article, “Paralyzed after falling from tree, hunter and dad-to-be opts to end life.” Shortly after learning of his spine injury and paralysis, the man decided not to remain on life support.  (11/6)

Art Caplan on emergency meningitis vaccines at Princeton

Art Caplan has a new piece at bioethics.net on Princeton’s plan to import and administer a meningitis vaccine not approved for use in the US in an effort to curb an outbreak of meningitis B that has already sickened several students.

Government health officials said Friday they have agreed to import Bexsero, a vaccine licensed only in Europe and Australia that does protect against meningitis B.  And that decision seems entirely reasonable given the threat that this nasty strain of meningitis poses.

That said, the question arises — what should those getting the vaccine be told?  Are they being offered a proven vaccine, an experimental vaccine, a vaccine believed to be the best choice given the threat of an epidemic or something else?  Can a student, campus worker or faculty member refuse the vaccination and stay in school or in a dorm?  Should those who have visited the campus recently be tracked down and offered the vaccine?  If people do refuse should they identify themselves in anyway as unvaccinated and to whom?

Read the full article here.

Caplan on Organs and Inmates

By Art Caplan

Are we ever capable of laying a stupid idea to rest in America?  Apparently not.  The latest tempest in the ever-resurrecting world of solutions to the shortage of organs is donation by executed prisoners.  The Governor of Ohio held up a plan to execute a man on death row when he requested that his organs be donated to his mother and sister each of whom have serious health problems.

According to the AP,

“Ohio Governor John Kasich on Wednesday stayed the execution of convicted killer Ronald Phillips to assess whether Phillips’s non-vital organs or tissues can be donated to his mother or possibly others. Phillips, 40, was scheduled to be executed Thursday for the 1993 murder of 3-year-old Sheila Marie Evans.

“I realize this is a bit of uncharted territory for Ohio, but if another life can be saved by his willingness to donate his organs and tissues, then we should allow for that to happen,” Kasich said in a statement.”

The Governor need not have bothered.  What child rapist and murderer Ron Phillips had in mind was donating his heart and kidneys to his family.  He has shown no interest in helping anyone else nor did he ever mention tissue donation.

Moreover, getting organs from an executed prisoner is both impractical and immoral.

Continue reading

Twitter Round-Up 11/5

The Affordable Care Act continues to be a popular topic of discussion amongst Bill of Health contributors, who also recently touched on issues of drug approval, vaccine improvements, and provider decision making.

Frank Pasquale tweeted an article about the extremely low-cost health insurance policies that will be available to some people under the Affordable Care Act. Millions of people will be eligible for free-premium plans, but an associated risk is that people will opt for these at the expense of plans that cover necessary care. (11/4)

Art Caplan tweeted his agreement with Robert Kuttner’s blog post about the Affordable Care Act. Building on private insurance was a mistake, according to Kuttner, whereas simply extending Medicare would have been a more favorable approach. (11/4)

Art Caplan also tweeted the results of a new study from Costa Rica suggesting that just one dose of the HPV vaccine might be enough to protect women from the virus. In his tweet, Caplan suggests that such a change might make the vaccine, which is currently taken in three doses, more widely accessible around the world. (11/4)

Michelle Meyer posted an article about the difficult balance between the FDA approval process and patient needs. The author describes his experience as part of a promising trial for a treatment for polycystic kidney disease, only to be let down by the Administration’s decision not to approve the drug. (11/2)

Frank Pasquale tweeted the results of a study revealing that half of clinical decision support (CDS) alerts are inappropriately overridden by providers. CDS alerts highlight things like patient allergies, drug interactions, etc., and can be potentially dangerous when erroneously ignored. (11/3)

Amitabh Chandra posted an article comparing the rollout of the Affordable Care Act to that of Massachusetts’s healthcare program in 2006. The author highlights, among other things, differences in the laws themselves, the websites designed to implement them, and the political context of the time. (10/30)