Recovery from PVS -- Haleigh Poutre

In September 2005, 11-year-old Haleigh Poutre arrived at Baystate Medical Center severely beaten into a coma. According to ABC News, doctors judged that "Short of developing a technique for a complete brain transplant, there is no hope that medical treatment will be discovered in the foreseeable future which could reverse" her condition. The Massachusetts DSS was given custody and, in October 2005, sought to remove Haleigh from life support. A Massachusetts court granted that request.

But in January 2006, just days before doctors planned to remove her ventilator, Haleigh began breathing on her own and showing other signs of brain activity. And over the past two years, Haleigh has continued to recover at the Franciscan Hospital for Children near Boston. Apparently, she is able to communicate through a keyboard and speak some words. Haleigh is expected to testify in the criminal case pending against her stepfather, who is accused of the physical abuse responsible for her medical condition.

"While such recovery is unusual, Larry Goldstein, director of the Center for Cerebrovascular Disease at Duke University Medical Center, said there have been other reported cases of people recovering from persistent vegetative states within a few months." If correct, that may make it more difficult to base policies (like the Manitoba Guidelines) on a PVS diagnosis. While most commentators agree that a permanently unconscious patient cannot benefit from continued treatment, it is often uncertain whether any particular patient's unconsciousness if permanent.

Golubchuk and the Manitoba Guidelines

I just finished listening to a broadcast from the CBC's February 4th The Current. It is a nice 23-minute well-balanced coverage of the issues in the Golubchuk case and the Manitoba licensing board rules.

The Golubchuk's lawyer Neil Kravetzky describes the factual background in that case. He then critiques the Manitoba Guidelines, particularly (i) the totally subjective nature of the inappropriateness determination, and (ii) their release during ongoing litigation of the precise issues addressed by the Guidelines.

Bill Pope from the College of Physicians defends the Guidelines. Among other thing, they make things transparent; they afford proxies the opportunity for outside review; and they create uniformity across the province.

Arthur Schafer, a Manitoba ethicist also defends the Guidelines. The clarify what is already widespread; they rationally allocate resources; they give resources to only those who will benefit and avoid giving care to those who will suffer. Moreover, while the Guidelines are mandatory for physicians, the real "last word" still lies with the courts.

Kerry Bowman, an ethicist at the University of Toronto, is more critical of the Guidelines. He notes that these are not purely clinical decisions, emphasizing the value judgments at stake. He also thinks that there is "the potential for Charter challenges."

Anti-Futility Radio

Christian NewsWire reported yesterday that the Terri Schindler Schiavo Foundation is launching a weekly one-hour talk radio program, America's Lifeline. The show begins Saturday, March 15 on Talk Radio 860 WGUL in Tampa, Florida. Its purpose is "to educate Americans about their health care rights as well as protecting themselves and loved ones who may be sick or disabled from the threat of euthanasia." America's Lifeline will focus on (among other things):

• Controversial Cases Such as the Lauren Richardson Case
• Advanced Directives & Wills
• Threats to the Disabled
• Euthanasia
• Doctor Assisted Suicide
• Medical Futility & Artificial Care Laws
• Ethics Committees

The show will also be streamed at http://860wgul.townhall.com/.

Ethics Committees 101

Today, I attended a conference in Memphis conducted by Micah Hester, who just published a new book titled Ethics by Committee: A Textbook on Consultation, Organization, and Education for Hospital Ethics Committees.

The session was well-planned and focused largely on how to conduct consults. But it also covered a little of ethics committees bylaws, education, and policy drafting. Books like this and education seminars like this are important. Yet, they are sorely underutilized. While most of the nearly 6000 hospitals in the United States must (per Joint Commission accreditation requirements) have a mechanism to resolve ethics issues, most are sloppily constituted and most (and sometimes all) members lack any training in either substantive bioethics or conflict resolution.

The constitution and qualifications of hospital ethics committees materially matters to medical futility because most consults of most ethics committees concern end-of-life disputes. And futility disputes comprise a large proportion of these. Since treatment disputes are almost always resolved extra-judicially, the ethics committee is often the de facto (and in sometimes even the de jure) forum of last resort.

EMTALA: Its Application to Newborn Infants

I wrote a short article for the American Bar Association Health Law Section's Litigation and Risk Management Interest Group. It was published in the March 2008 ABA Health eSource, available here.

In this article, titled EMTALA: Its Application to Newborn Infants, I review the Preston v. Meriter case in which a hospital unilaterally refused to provide treatment for a very premature infant. In 2005, the Wisconsin Supreme Court ruled (somewhat like the 4th Circuit in Baby K) that notwithstanding the standard of care EMTALA applied to this case. But on remand, in January 2008, the Wisconsin Court of Appeals held that EMTALA did not apply. Since this is the first case to directly address the status of newborn infants after the 2003 regulations, I analyze the Wisconsin court's opinion and argue that EMTALA probably does still apply to newborn infants born to inpatient mothers.

The Patient is Permanently Comatose: The Family Wants Everything

This afternoon, I attended a conference from the West Virginia Network of Ethics Committees titled The Patient is Permanently Comatose: The Family Wants Everything. I have found that the resources offered by WVNEC are of a high caliber. The panelists were appropriately diverse: a physician, a lawyer, a priest, and a nurse ethicist. The discussion was balanced between mechanisms to resolve the dispute through communication and mediation, and mechanisms to resolve the dispute once it proved intractable.

As I largely focus on the latter (and much rarer) intractable situation, I was interested to learn that the West Virginia University "Guidelines for Medically Ineffective Treatment" have never been used to withhold LSMT against surrogate wishes. In only three cases did things come close. But even in these cases, while providers told surrogates that they would unilaterally withhold or withdraw (in 72 or 96 hours), upon receiving that news, consented or at least assented to that course of action.

What Y'all Gon' Do with Me?

Study after study has shown that African-Americans more frequently and more adamantly demand life-sustaining medical treatment. This is largely due to distrust and miscommunication. To address this, the Kansas City Hospice & Palliative Care and African-American author and social worker Gloria Thomas Anderson have released a booklet addressesing end-of-life Care issues of African Americans titled What Y’all Gon’ Do With Me?

"Long-held cultural beliefs and a historical mistrust of the health care system are the major reasons hospice and palliative care are used far less by blacks than by whites, according to a recent study. . . . The booklet addresses the historical, cultural and family values that influence African Americans’ health care decisions, and covers the spiritual, practical and legal considerations in end-of-life care." Anderson said, “I hope the information in this booklet empowers African Americans to make the best health care decisions before they are unable to communicate what they want for themselves.” “I want African Americans to know that end-of-life care isn’t about giving up. It’s about quality of life.”

Washington's Death with Dignity Initiative is not About "Suicide"

Today's Seattle Times reports that a judge refused to add the words "physician-assisted suicide" to the Washington state's ballot or voter pamphlet concerning Initiative 1000 (the death with dignity initiative). Labeling that "suicide," I-1000 attorney Jessica Skelton said, is "politicized language" that "implies a value judgment and carries with it a social stigma. Instead of "suicide," voters will read that Initiative 1000 would allow some terminally ill patients "to request and self-administer lethal medication" prescribed by a doctor. Judges in some of the early right-to-die cases struggled mightily to avoid describing as "suicide" the choice of even non-terminally ill patients to forgo life-sustaining medical treatment. Today, most state statutes specifically describe the forgoing of life-sustaining medical treatment as not suicide. Justice Scalia famously derided these efforts in his Cruzan concurrence. But it seems to be especially appropriate to describe as "suicide" the taking affirmative measures (like obtaining lethal medication for that purpose) to end life. On the other hand, as certain vocabulary gets captured and tainted by certain groups and associations, it is often time to move on to new vocabulary. The very language of interventions (DNR v. DNAR v. AND) seem to have a material effect on the acceptance of those interventions. A good coverage of these issues is in Kathryn Tucker's Patient Choice at the End of Life, 28 J. Leg. Med. 305 (2007), in which she "urges that value-neutral terms that accurately represent the individual's end-of-life choice be used. Value-laden phrases, intended to spark negative connotations, should be avoided."