Tuesday, June 23, 2015
Members of the House Committee on Energy and Commerce and the Senate Committee on Finance sent a letter today to Secretary Burwell, urging HHS to issue the Equal Access regulations that have been in limbo since 2011. This is an important and much-needed call for action in the wake of Armstrong v. Exceptional Child Center, which shut down private rights of action for Medicaid providers seeking fair reimbursement from states in federal courts. The letter explicitly recognizes the harm that the Court's recent decision will inflict on the Medicaid program, which I've written about on this blog (most recently here) in the context of both Armstrong and Douglas v. Independent Living Center.
Though the draft regulations were not perfect, and in fact would benefit from putting some real teeth into HHS's review of states' payment decisions on equal access to care for Medicaid beneficiaries, they would at least ensure that HHS is actively overseeing states' payment rate decisions. Currently, states are able to change rates with very little intervention from HHS, which often involves decreasing payment rates to balance state budgets. Now that the Court has tasked HHS with enforcing the equal access provision, rather than the providers who HHS admittedly relied on to raise flags about states' low payment rates, HHS must complete the draft regulations. Perhaps this direct plea from members of key committees will refocus HHS's attention on these important regulations.
Friday, March 14, 2014
Health Law Prof Extraordinaire Nina Kohn of Syracuse University, now visiting at Maine, shared this link with me http://www.cbc.ca/thecurrent/episode/2014/03/11/why-are-family-members-being-banned-from-visiting-their-relatives-in-nursing-homes/ because of an experience I had involving the ICU staff when my mother was hospitalized last year and I expressed concern about emerging pressure sores from compression socks that were not being monitored. I don't think this problem is unique to Canada.
I received wonderful help and advice from two very different groups--the National Center for Medicare Advocacy-a terrific resource for navigating a complex and often not very patient centered health care system--and Texas Right to Life which is promoting the Will to Live document as a counter to the assumption that the possession of an "advance directive" is the equivalent of a decision to forgo care in order to hasten death.
Monday, January 20, 2014
What are We Learning About Brain Death from the McMath and Munoz cases?
By Jennifer S. Bard, J.D., M.P.H., Ph.D.
With the understanding that this is one of those topics that health law professors are supposed to know something about, here is a quick update of what’s going on. Along with my own views about the possible misuse by hospitals of declaring brain death in what are really medical futility cases.
Jahi McMath, age 12, in California who lost consciousness after a routine tonsillectomy and Marlize Munoz, age 32 in Texas who collapsed on her kitchen floor have both become involuntary public figures as their families struggle to make sense of both their medical conditions, which are complex, and of the laws which have declared them both legally dead based on a lack of brain activity. In legal terms, a person declared “brain dead” has the same status as any other dead person. Each state is entitled to make its own decision of whether or not to adopt a brain death statute. California’s and Texas’ are similar in that they require the “complete cessation” of all brain activity. The declaration of death is, in all states, a legal act. Most hospitals have a policy similar to this one which set criteria and require the participation of at least two doctors. A declaration of death cuts off any rights of the individual. The family of someone declared dead is no longer a surrogate decision maker. Rather, they have something like property rights to the disposal of the remains. More pointedly, a declaration of death ends all eligibility for medical insurance, including Medicaid and Medicare. If a family decides to release the organs for donation, their host becomes not a patient but rather a “heart beating organ donor.”
When a family wants to donate their loved one’s organs, a declaration of brain death is helpful mechanism for doing so. Indeed, a series of high profile cases involving anencephalic infants in the 1990s pointed out the frustrations of parents who wanted to donate their children’s organs but could not because they retained minimal brain function. However, there is never any legal need for a declaration of brain death in order for a family to withdraw life sustaining treatment. In 1993 bioethicist Robert Veatch wrote an important article in the Hastings Center Report in which he pointed out that “no one really believes that literally all functions of the entire brain must be lost for an individual to be dead.” And indeed, no one really believes that a piece of paper converts a warm, breathing body from alive to dead.
Many families in the McMath’s situation would have, even in their shock, heeded the doctors advice and stopped treatment. Although we do not, yet, know what actually happened, I suggest that it is possible that cases like the McMath’s can arise when hospitals and doctors seek to pressure families into withdrawing treatment by, essentially, taking away their right to receive care. This can be a lot more direct than the often times consuming and complex process of withdrawing "futile" care. Indeed, in the actual absence of all brain function there are no interventions that can replace the complex functions of the human brain and deterioration and decay are inevitable.
Although it is easy enough to say that Jahi’s family’s refusal to accept reality stems from ignorance or grief, it is not fair, as some have done, to call them crazy for mistrust of a diagnoses that is based in theory, not reality. Jahi may be irrevocably brain injured, but there are increasing signs that she may indeed have some brain function. Her thrashing movements may be reflex, not purposeful—but corpses do not have reflexes. This week, neonatologist Dr. Paul Burn notes, without citation so we do not know if it is true, that Jahi, has regained sufficient hypothalamus function to regulate her own body temperature. A corpse does not regulate its own body temperature.
This is not to suggest that the doctors are wrong about the amount of brain damage she has sustained or her chances of even retaining a sliver of consciousness—but that is not the same as “complete cessation” of all brain activity.
In contrast to the case in California, Marlize’s family, in Texas, want to let her go. The hospital is invoking a provision of the Texas Advanced Directives Act law which prohibits a hospital from withdrawing life sustaining treatment from a pregnant women. It may be, as bioethics experts law Tom Mayo at SMU explain, that this law does not apply after a declaration of death, but only when the mother is in a permanent coma. But, again, this points out the limits of using the legal concept of brain death to describe the medical condition of any particular person. Marlize may well be dead, but her fetus certainly is not. But until Marlize’s family gets clarification in the case it has filed in Tarrant County, or, ultimately, the Texas Supreme Court this distinction does not change their situation.
So where does that leave a health law professor? One of the reasons brain death is so hard to define is that we know relatively little about how the brain works. As the American Academy of Pediatrics Guidelines Determination Of Brain Death In Infants And Children,“ No randomized control trials examining different strategies regarding the diagnosis of brain death exist.” It even seems increasingly likely that we are not even sure where all of what we consider to be brain function happens—it turns out-—as folk wisdom has always believed—that a lot of it may happen in our guts. .
It may be that these two cases spur changes to the law—although other equally publicized situations have not-but for teaching purposes they both are helpful in exposing law students to how much we actually do not know about the human body and, especially, our brains.
Wired Magazine, in August 2011, ran a fascinating article called, “7 Creepy Experiments That Could Teach Us So Much (if they weren’t so wrong). These “7 Creepy Experiments” include some truly creepy things like using “a synthetic virus” to insert into an embryonic cell a “reporter” gene (green fluorescent protein, for example) in order to track embryonic development throughout the life cycle or deliberately separating twins at birth in order to study them.” I use it in my Human Subject Research Law class to get students thinking about the limits of consent, but more generally it and these cases tell us something about the reality that we need to make and enforce law in the face of limited information.
Sunday, January 19, 2014
While Jahi McMath’s family had to fight to maintain treatment for their daughter after she lost brain function and was declared dead, Marlise Munoz’ family is fighting to stop her treatment after she lost brain function and reportedly was declared dead. Ms. Munoz is pregnant, and the hospital hopes that doctors there will be able to deliver her child after it becomes viable.
Should Ms. Munoz’ pregnancy make a difference? Many observers do not think so, and have denounced the hospital that is continuing to provide artificial ventilation and other intensive care (e.g., here and here). But there is no clear answer in ethics or law for cases like this. Reasonable people can differ, and reasonable hospitals can come down on either side of the question whether Ms. Munoz’ family can refuse further care on her behalf or whether the hospital should try to bring her fetus to term.
Indeed, courts have disagreed on the question whether even a mentally competent pregnant woman can refuse medical treatment that is needed to protect the health or life of her fetus. Some courts have sided with the woman’s right to decide; others have sided with the public interest in preserving fetal health. Courts have been especially willing to require treatment when it would not pose any risk to the woman’s health. If Ms. Munoz is dead, continued medical care cannot cause any harm to her health.
In some ways, the argument for continued care is weaker with a dead pregnant woman. In the cases involving mentally competent women refusing treatment, the women want to bear the child. They just want to do so without certain medical interventions. Ms. Munoz' family believes she would not want to bear the child at this point, and they do not want her to bear the child either. It’s not only unwanted medical treatment that is being imposed. There also is unwanted parenthood being imposed on Ms. Munoz and her husband.
Moreover, unlike the usual pregnancy, Ms. Munoz’ fetus will not become viable if left alone. All in all, this is a very hard case, and it is important to treat it as such. The interests of Ms. Munoz and her family are important, but so is the societal interest in protecting fetal life. Harsh condemnation of the hospital and its medical staff is not warranted.
[cross-posted at Faculty Lounge and orentlicher.tumblr.com]
Sunday, January 5, 2014
While the law has recognized for decades that death occurs when a person’s brain no longer functions, the case of Jahi McMath reminds us that people continue to disagree about the timing of death. For many people, death occurs only when a person’s heart has permanently stopped beating.
In almost all states, the absence of brain function signifies death, even if the person’s heartbeat can be maintained by medical care. New Jersey, however, permits people to reject “brain death” on the basis of their religious beliefs and insist that death be declared only upon the loss of all cardiac function.
New Jersey has it right. When people hold different and legitimate views about life and death, we should accommodate their views as much as possible. Indeed, we do so to a considerable extent at the beginning of life. In some sense, we let women decide about the legal status of their fetus, as long as they choose a point between conception and viability. For women who do not view embryos as persons, the law permits abortion until viability. And for women who view their offspring as people at the moment of conception, the law provides protection from harm to their fetuses by other people.
There are costs when people are provided intensive care after they meet brain criteria for death, but there also are costs when we don't tolerate sincerely held, minority viewpoints in society. It's often better to err on the side of toleration, especially as with cases like Ms. McMath’s, the costs of toleration are a trivial amount of what we spend on health care overall.
[cross-posted at orentlicher.tumblr.com]
Friday, November 15, 2013
An article in the New York Times nicely illustrates a point I usually make when I discuss living wills in class or other settings. I typically advise my audience that it is probably more important for patients to read their physicians' living wills than to write their own. As a practical matter, the views of physicians about end-of-life care are much more important than the preferences of their patients when end-of-life decisions are made. (For a discussion of this point, click here.)
Just as patients with cancer often consider whether different oncologists are aggressive or conservative in their approaches to cancer treatment, so should patients contemplating their end-of-life care consider whether different physicians are aggressive or conservative in their approaches to treatment at the end of life. Finding a physician with a similar perspective may be the most important way to ensure that a patient is treated as s/he would want to be treated.
Monday, July 29, 2013
This month's Hasting Center Report contains a case study written by me and by Dr. Craig Klugman considering both the practice of "deporting" indigent patients who lack legal immigration status and the ability of a medical center to withdraw life sustaining treatment against a family's wishes.
The article considers a scenario occuring in Texas which, of course, has a highly structured mechanism to refuse to follow an advanced directive if it means providing care which the hospital believes not productive. However, the problem of how to assert the legal right not to have a DNR is one of growing in importance.
For example, organizations like the Texas Alliance for Life tried but failed this last legislative session to vote in laws that would bar physicans from writing DNR orders against a patient or her surrogate's objection.