Brain Death- Broader Concerns

For the last few months,  I have been thinking about how to organize the material coming into my feed about brain death. My most basic comment is to point out that the Catholic Church is also busy defining the time of death. After the Terry Schiavo case, they realize that they did not have clear enough decisions. So in 2008-2010, there have been speeches, documents and Catholic policy papers on brain death. Catholic run hospitals are the largest group of hospitals in the US. The question is whether they will adopt a theory of human nature approach or a casuistry approach for the final documents.

Another set of documents relates to the changes in the President’s Commission on Bioethics, there have been major changes from the Bush commission to the Obama commission. (You can read the papers and transcripts here and here.) But also the change from clergy as bioethicists to professional bioethicists and now a majority are physicians and scientists. Pay attention when you a read a statement if it is by a scientist, a clergy acting as a scientist, or a clergy speaking from religion. Also pay attention if the new clergy statements are following Bush or Obama President’s Commission on Bioethics guidelines and visions. In this set of documents, I also should mention the Congressional debates over end-of life panels.

The current perspective for those in theology, hospice, or those wanted to give a religious meaning to death is return to a deathbed and a natural acceptance of death. People feel there has been too much medical intervention in our lives. Here is a prior post on the topic with two thoughtful comments.

These debates about the definition of end of life have bothered moderns for 250 years already. 19^th century Europeans projected their anxiety of burying still alive people onto vampire stories and tales from the crypt. The famous Schwerin debate between Mendelssohn and Emden was over end of life, Mendelssohn claiming that someone can still be alive in coma and life takes precedent over burial customs. 

Post WWII Twentieth Century thinking tended to be infatuated with medicine and trusted the doctor; there are several excellent books on that topic. Now there is a greater skepticism toward physicians as deciding the big question of end of life. Whichever way the brain death issues of 2008-2012  get settled, it is only for a few decades. Know that the question will most likely be opened up at least twice more within the next hundred years.

American newspapers set this as a personal choice and do not usually reflect on the complex weave created by a religious affiliation hospital, and the religious affiliations of the doctors and nurses in the mix. The Catholics involved in health care that I know are familiar with the writings of Fred Rosner and the Jews are familiar with Catholic Bishops statements.

So I was delighted when I was saved the trouble of organizing my links by the post last Thursday by Religion Link, a service that gives resources for papers to write articles on religion. Many papers take the bait and in three weeks one can compare how various papers covered the same religion story from the same sources.  I will give selections from a much longer Religion Link post. As you can see, the post gives lots of great links.

Defining brain death and sparking a health care debate
Posted on January 12th, 2011

The Obama administration’s decision to halt regulations authorizing end-of-life counseling through Medicare once again shows how politically fraught the issue can be in the wake of the health care reform controversy over so-called death panels. But knotty issues remain for ethicists and religious groups on what constitutes brain death and the end of life.

The renewed debate can be traced to technological advances and new brain research, and also to questions being raised by believers, particularly in Catholicism and Judaism.

Pope Benedict XVI and Vatican officials have in recent years questioned whether “brain death” is an adequate marker to determine biological death.

Caring for people in the final stages of life is one of the most expensive aspects of the nation’s health care system, accounting for as much as one-third of all health care costs, and about 30 percent of Medicare expenditures come in the last year of a patient’s life. Moreover, modern medicine is able to keep human beings — or at least their bodies — alive for increasingly long periods, often in what is known as a “persistent vegetative state,” or PVS.

This comes as the nation’s population continues to grow grayer, with the responsibility of providing for the terminally ill falling on the next generation, and on strained state and federal budgets.

Americans last engaged in widespread public discussion about the emotional topic of people in a “persistent vegetative state” in 2005, during the protracted and acrimonious national debate over the fate of Terri Schiavo.

At that time, Schiavo’s husband, Michael Schiavo, decided to remove the feeding tube that had kept the severely brain-injured woman alive — though unconscious and unresponsive –- for 15 years. Her parents strongly objected and took legal action to prevent the move. Michael prevailed after weeks of rancorous dispute that eventually involved national politicians as well as religious figures, ethical experts and, ultimately, the U.S. Supreme Court. Points of contention included whether and how Terri Schiavo had expressed her desires about her situation, whether her condition justified steps that would have the effect of ending her life, and who had the right to decide. The recent developments in medical technology and ethics involve each of these issues.

In the brain imaging study published in February 2010, British and Belgian researchers reported on studies of 54 persistently unconscious individuals. In five of these people, a brain-imaging machine revealed particular patterns of brain activity that occurred after researchers asked “yes” or “no” questions to the patients. “A small proportion of patients in a vegetative or minimally conscious state have brain activation reflecting some awareness and cognition,” the article states. The technique “may be useful in establishing basic communication with patients who appear to be unresponsive.” But an editorial in the Journal cautioned families of brain-injured patients against taking from these results any unfounded hope that the patients with severe brain injuries can improve.

In November 2009, the nation’s Catholic bishops issued new guidelines on care of terminally ill patients in Catholic hospitals that tightened standards to prevent the actions taken in Schiavo’s case from occurring in institutions under church control. The new policies would make refusal or removal of feeding tubes and some other life-sustaining measures more difficult and, many observers believe, conflict with the desires — and even the legally valid directives — of some patients to have such measures ended or never begun. “In principle, there is an obligation to provide patients with food and water, including medically assisted nutrition and hydration for those who cannot take food orally,” states the document, Ethical and Religious Directives for Catholic Health Care Services. “This obligation extends to patients in chronic and presumably irreversible conditions (e.g., the “persistent vegetative state”) who can reasonably be expected to live indefinitely if given such care.”

These standards, however, differ sharply from the general practices of American hospitals, which permit end-of-life decisions that include withholding of nutrition and hydration if such comports with the express wish of the patient. Observers therefore predict the probability of conflict between the new guidance and the desires and decisions of many dying individuals and their families.

• The University of Miami’s second Global Business Forum, held Jan. 12-14, 2011, explored “The Business of Health Care: Defining the Future” and included a panel titled “Care Models, Economics and Ethics of End of Life Decision Making.”
• On Jan. 6, 2011, the Obama administration reversed course on end-of-life counseling regulations due to concerns that they would revive the “death panels” controversy.
• Research reported in the February 2010 edition of The New England Journal of Medicine indicates that some individuals with brain damage previously thought to prevent thought, consciousness and communication in fact possess previously unsuspected levels of awareness. Even if aided by advanced technology, they have the ability to answer questions accurately. Experts caution that this dealt with a small percentage of patients in PVS and that hopes for a recovery for these patients were vanishingly small.
• In November 2009 the Catholic bishops of the United States issued guidance to Catholic hospitals banning the removal of nutrition and hydration from patients who would survive if they were provided. That has raised concerns that advance directives could be ignored in Catholic hospitals if they conflict with Catholic policies. There are more than 600 Catholic medical facilities in the United States, the largest single private provider of health care in the country.
• Catholic teaching on the definition of death and the ethics of organ harvesting appears to be in flux. In the latter half of 2008 the issue came to the fore when the Vatican newspaper published a front-page column calling for a re-examination of the definition of brain death. Subsequently, Pope Benedict XVI delivered an address to a Vatican conference on organ donation in which he said that “where certainty has not been reached the principle of precaution must prevail.”
• In October 2009, Nature magazine published an editorial calling for a “realistic definition of life’s end” in order to facilitate the harvesting and donation of organs, among other things. The editorial sums up the current laws and policies and the state of the debate.

• Read “Caution urged after study on brain activity by ‘vegetative’ patients,” a March 3, 2010, story by Catholic News Service.
• Read a Feb. 27, 2010, article from Kaiser Health News, “Catholic Directive May Thwart End-Of-Life Wishes.”
• Read the abstract of “Willful Modulation of Brain Activity in Disorders of Consciousness” in the February 2010 New England Journal of Medicine.
• Read “Ethical and Religious Directives for Catholic Health Care Services” (PDF file) issued Nov. 17, 2009, by the United States Conference of Catholic Bishops.
• See the text of Pope Benedict XVI’s Nov. 7, 2008, address on organ donation and defining death.
• Read an Oct. 3, 2008, article in the online magazine Slate, “Undead Babies: The retreating boundaries of organ harvesting.”
• Read an overview of end-of-life issues from the National Institutes of Health.
• Read about end-of-life issues from the University of Washington’s Ethics in Medicine program.
• Read about legal and ethical issues in dying and about end-of-life preferences that differ by race and gender, both from the AGS Foundation for Health in Aging.