Ventilating the Dead: Two Cases

Jahi McMath is dead as a result of a rare and tragic bleeding complication following what was supposed to be a routine tonsillectomy. There is no trace of electronic activity in her brain. By law, she is dead; on Friday California decreed that she had been dead since December 12. But she's dead more than just "by law." She has no feeling, no thoughts, no memories, no dreams, no experiences, no emotions, no responses--and no hope of ever having any of those things ever again. Thanks to mechanical intervention, her heart continues to beat and her body appears warm and life-like. Her parents, hoping for a miracle, went to court to prevent her medical team from removing the life-support machinery from her dead body. They lost the court battle, but found a California nursing facility willing to accept transfer of the dead girl, and to keep her body attached to machines. Presumably the nursing home will charge someone for this service, though it's not clear what state or private insurance would pay for medical care for a dead person. The parents have already received over $50,000 in private donations, but mechanical ventilation costs thousands per day. In any case, Ms. McMath's body will gradually deteriorate even on mechanical support. She is already described by her family's attorney as being in "very bad shape" after her transfer. "We don't know if she's going to make it," he said of the dead girl. "Her medical condition, separate from the brain issue, is not good." 

Enter former (and future?) Republican presidential hopeful Mike Huckabee:

The former Arkansas governor and ordained pastor began his Fox News show by admitting that he did not have the medical experience necessary to understand 13-year-old Jahi McMath’s condition but he encouraged her family to fight against any attempts to remove her from life support even though doctors said she technically "died several weeks ago.”

In other words, "I don't know the facts but I know what to do." Thanks, Mike.

 “Every life has value and worth,” Huckabee told his viewers on Saturday.

But Ms. McMath is no longer alive, Mike.

“There is no such person who is disposable, one whose life has been deemed by others to be less than others and therefore expendable, I can’t share that.” He continued: “The road that starts that way in deciding that some lives have less value and are unworthy of protection, that leads to a culture that tolerates the undeserved killing of over 55 million unborn children in this country. It leads to China’s birth policy that limits the number of children for a family and enforces forced abortion if they deviate from the state-determined ideal....It’s also that culture that allowed the Nazis to to hideously justify the savage slaughter of millions of Jews, disabled people, old people and those with mental illness,” Huckabee said.

Yep, declining to give medical treatment to corpses is just where Hitler started. Give them an inch....

 “Let’s hope and pray that the courts continue to do what every court should do, respect parents over government, family over hospitals and, above all, protect Jahi from them all.”

Meanwhile, in Texas, a hospital is keeping Marlise Munoz on mechanical ventilation against the wishes of her husband and her parents, and against her own previously-expressed wishes. The hospital is acting pursuant to the Texas Advance Directives Act, which prohibits withdrawal of life-support from any pregnant patient. But at least one doctor has declared the patient brain-dead, so the question arises: is a dead person a "patient"? Is mechanical ventilation on a dead person "life support"? Several legal experts, including two involved with drafting the Texas law, have opined in the press that if she is in fact brain-dead, the hospital is misinterpreting the law in keeping the woman attached to mechanical support.

Ms. Munoz collapsed with a pulmonary embolism and ceased breathing. By the time she was discovered by her husband, she had suffered profound brain damage. (Her fetus, which suffered the same lack of oxygen, is likely to be brain-damaged as well.) Her husband, father and mother all agree that Ms. Munoz would not have wanted to be kept on life support in these circumstances.

I wonder if Mike Huckabee thinks that in this case, we ought to respect parents over government and family over hospitals?

Melissa Harris-Perry Appearance: My Not-Quite-15 Minutes of "Fame"

Here I am on Melissa Harris-Perry's MSNBC show, talking with a very sensible panel about end-of-life care. The two segments below do an excellent job of introducing audiences to my nascent bald spot. Plus I say some stuff; and a number of other people say some stuff too. I pretty much endorse all the stuff they say.  Comment on how said stuff was received willl follow shortly.

Visit NBCNews.com for breaking news, world news, and news about the economy

Visit NBCNews.com for breaking news, world news, and news about the economy

Finally, something to make my children practice....

A new study by Ines Jentzsch at St. Andrews shows that playing a musical instrument may protect against mental decline though age or illness. Time to pick up that pennywhistle again!

An Interesting Infographic on Jobs in Public Health

A bit tough to read in places, but worth a look!

Abortion in Ireland

For the first time, Ireland will permit abortion in some circumstances. First, abortion is permitted when there is a real and substantial risk of loss of the woman’s life from a physical illness. (The law has special provisions regarding emergency situations.) Second, abortion is permitted when there is a real and substantial risk of loss of the woman's life by suicide. Two physicians need to attest to the risk of loss of life from physical illness; three to the risk from suicide. The law includes a conscience clause relieving any physician from participation in the procedure or the determinations relating to risk of loss of life. Text of the law is here. Context-giving coverage from the Guardian is here.

The new law is a baby-step compared to other countries' laws. There is still no provision for abortion in the case of rape or incest, or fetal anomaly; much less for abortion based on the woman's desire not to have a child. But the law is explicit in not limiting the woman's right to travel to obtain an abortion, leaving open the woman's option to travel to the UK for abortions not permitted under Irish law.    

Informed Consent: Cool PEG tube video edition

Here's a great Youtube video on PEG tube placement; it seems to be up as a marketing move by the company that made it. Is there any reason why patients and their families shouldn't always watch something like this in connection with informed consent for any procedure? BTW, I have no connection to Nucleus Medical Art, I just think it's a great video. Of course, it's not the whole of informed consent--someone contemplating PEG placement for a loved one with advanced dementia, for example, ought to be given data about whether PEG feeding actually increases lifespan. But videos like this are a great way to tell patients about procedures.

 

Somatic Cell Nuclear Transfer Used to Create Human Embryonic Stem Cells

A international team including scientists from Oregon Health & Science University and the Oregon National Primate Research Center have just announced in Cell that they have successfully used somatic cell nuclear transfer (SCNT) to develop human embryonic stem-cell lines. As I understand the paper, the team removed genetic material from the core of multiple oocytes from two different human donors, and replaced it with nuclear material taken from the skin cells of an embryo. Some portion of the eggs from each donor then proceeded to develop to the blastocyst stage, at which point their cells were plated and tested for pluripotency. Pluripotency was proven when the cells, injected into immuno-deficient mice, formed tumors containing tissue- and cell-types representing all three germ layers.This paper, then, is the most powerful proof of principle to date that we may one day be able to combine SCNT and embryonic stem-cell technologies to generate made-to-order, genetically-compatible replacement tissue for humans with diseases such as diabetes or Parkinson's.

It's important to note that the blastocysts were imperfect in various ways, and could not have successfully been implanted into a woman to make a child. (Members of the same team have not yet been able to create a cloned monkey embryo capable of implantation.) This has created some verbal problems that will no doubt be fodder for the culture wars. Strangely, the mostly-liberal National Public Radio is reporting that the scientists created and destroyed human embryos, while the mostly-conservative Wall Street Journal is saying that the team's achievement "is a long way from creating a human embryo."

Here's how I think of it: while the team used cloning technology to create human embryonic stem cells, they didn't exactly create and destroy a human embryo along the way; they created what they knew to be a faulty approximation of a human embryo, but one close enough to the real thing to generate pluripotent human embryonic stem-cell lines. (Think of the fact that human embryonic stem-cell lines can also be generated from parthenotes which are completely incapable of developing into embryos.)

Nonetheless, I'm pretty sure these scientists would have no problem with creating a perfect, and in principle perfectly implantable, human blastocyst--though they have no intention of implanting one, and no research oversight body anywhere would permit them to, even if they did. They want to generate tissue, and if perfecting human embryo cloning helps them do that, they will. Even if you agree with me that the toughest ethics questions aren't quite yet raised by this work, this work certainly implies that they'll be raised sooner or later.

Vermont Legislature Passes Physician-Assisted Suicide Law

The Vermont legislature has passed a new physician-assisted suicide law and is sending it to Governor Shumlin, who supports it and is expected to sign. The Oregon-style legislation will be the third such state law in the country and the first adopted by a legislature, as opposed to via popular referendum. The strange feature of this law, though, is that while it begins by mandating (in section 5283) a number of Oregon-like anti-abuse measures to make sure that the program doesn't help the wrong people to die by mistake (two different oral requests, 15 days apart; a written request for self-administered lethal medication signed by two disinterested witnesses; findings of terminality and capacity entered into the chart; and so on), most of these requirements sunset in 2016 in favor of the much shorter section 5289, which says only:

"A physician with a bona fide physician–patient relationship with a patient with a terminal condition shall not be considered to have engaged in unprofessional conduct under 26 V.S.A. § 1354 if:
(1) the physician determines that the patient is capable and does not have impaired judgment;
(2) the physician informs the patient of all feasible end-of-life services, including palliative care, comfort care, hospice care, and pain control;
(3) the physician prescribes a dose of medication that may be lethal to the patient;
(4) the physician advises the patient of all foreseeable risks related to the prescription; and
(5) the patient makes an independent decision to self-administer a lethal dose of the medication."

A subsequent section immunizes any physician from civil or criminal liability for any actions performed in good faith compliance with the law.

The legislators's assumption, according to press coverage, is that physicians will have developed adequate professional standards for physician-assisted suicide by 2016. I wonder whether the law's repeal of safeguards will really last, or whether the Vermont legislature will re-think the matter in the next year....

And I know, I'm supposed to say aid-in-dying, not physician-assisted suicide. But I'm an academic, not an advocate, and even though the term "suicide" scares some folks, and others argue that it's not really suicide if you're dying of a disease you didn't choose, my own view is that if you give a terminally ill person some pills with which she can kill herself faster than her underlying disease would have, you're assisting in her suicide. (Wow! On that one verbal point, I actually agree with Wesley Smith! Though, unlike him, I approve of physician-assisted suicide with appropriate safeguards, and think that the Oregon safeguards are appropriate. And I'm not a fan of slippery-slope arguments.)