In the Tony Award-winning production "Whose Life Is It Anyway?," sculptor Ken Harrison is paralyzed from the neck down in a car accident, and after a mighty struggle in which all he can do is talk, he wants to be allowed to die. The narrative investigates the philosophical, moral, legal, and economic dimensions of that choice, and it probes the question, posed by its title, of who gets to decide end-of-life issues.
That play came out in the 1970s. Now, some three decades later, two high-profile, real-life cases are showing just how thorny the issue continues to be – probably even more so.
Two young women – teenager Jahi McMath in California and mother Marlise Munoz in Texas – have both been deemed brain-dead, a final state according to statutes. Beyond that determination, however, the cases have taken dramatically different paths and reveal the many complexities involved.
All 50 states have either passed laws or embraced judicial doctrine that adheres to guidelines endorsed by the American Medical Association as well as the American Bar Association related to the determination of death. These guidelines address brain death and identify it as death, even if heart and breathing functions continue.
But for some, these issues have remained open for debate, especially as medical technology advances – and as debates involving other difficult issues, such as abortion, evolve.
It doesn't help that end-of-life quandaries are, at best, foggy in the public's mind. The medical distinctions between a "persistent vegetative state" and "brain death" are little understood, for instance, say legal and ethical analysts – not to mention who gets to decide.
Simply put, some families may feel caught in the middle between legal standards and personal beliefs, including religious convictions.
The cases now in the public eye provide a moment to learn more about the larger issues, potentially helping others navigate them. With more discussion of the difficult points, people can avoid pain and anguish, some say.
"I think the lesson we've learned is that, often, the law conflicts with our beliefs and principles, and when they collide, the experience turns into something that no one expected it to be," says Areva Martin, founding and managing partner of the law firm Martin & Martin in Los Angeles. "I think the McMath family never thought it would be in this [situation]."
In the case of Jahi, the Oakland, Calif., teenager underwent tonsil surgery Dec. 9 and was declared brain-dead Dec. 12 after she experienced cardiac arrest and extensive brain hemorrhaging.
At least three neurologists confirmed the opinion that Jahi was brain-dead, and the hospital wanted to disconnect the girl from ventilators. But her mother – a devout Christian – begged the hospital not to disconnect Jahi, whom she believed was alive.
After a very public back and forth, which included court proceedings, the teen was released to the custody of her mother on Jan. 5. Jahi left the facility in a private ambulance to an unnamed location for care.
In Texas, the husband of Ms. Munoz found her unconscious at home on Nov. 26. She was rushed to a hospital, but the mother of one was declared brain-dead. Munoz and her husband, both paramedics, had had extensive conversations about end-of-life issues, and she had made it clear that she did not want to remain connected to machines.
But the hospital has refused to remove life support because Munoz is pregnant. Texas state law prohibits withdrawing or withholding life-sustaining treatment from a pregnant patient, regardless of her wishes.
Her husband filed suit against the hospital on Jan. 14.
Including brain death as a standard for death in the United States goes back to a Harvard University commission, which released a document about the matter in 1968. The commission did this because, it said, "Improvements in resuscitative and supportive measures have led to increased efforts to save those who are desperately injured. Sometimes these efforts have only partial success so that the result is an individual whose heart continues to beat but whose brain is irreversibly damaged."
The commission also noted, "Obsolete criteria for the definition of death can lead to controversy" – in particular, in terms of organ transplants.
It was "with unusual frankness" that the commission said a new definition was needed, says Charles Camosy, who teaches Christian ethics and bioethics at Fordham University in New York. The commission elaborated: "The burden is great on patients who suffer permanent loss of intellect, on their families, on the hospitals, and on those in need of hospital beds already occupied by these comatose patients."
Yet for many people, the details, especially as they relate to specific situations, are perplexing.
For one thing, being in a "coma" is not the same as being "brain-dead," which is not the same as being in a "persistent vegetative state." There are also gradations of consciousness, as well as cases in which people vacillate between different states. Former Israeli Prime Minister Ariel Sharon, for instance, was kept alive in Jerusalem in what was called a coma after a stroke eight years ago. But news reports last year said he had responded to pictures and recordings of his family – things not typical for a comatose patient.
Mr. Sharon died on Jan. 11.
All this is to say that discussion and clarification can be useful. Such a discussion could include the following broad questions:
• How should society allocate expensive medical resources?
• How can the values of pluralism and tolerance be balanced against the principle of fairness to all?
• How should society view death?
"[U]ntil we are willing to have a national conversation about the impact of a more open treatment of death on issues of social justice, health care providers are likely to experience ever-increasing moral distress over how to abide by the Hippocratic Oath's enjoinder to first do no harm in a society in which death continues to be viewed as patently un-American," writes Lynn Pasquerella, president of Mount Holyoke College in South Hadley, Mass., who has a PhD in philosophy.
Americans live in a place where "technological advancements have preceded thoughtful reflection regarding the ethical, legal and social implications of the use of that technology with respect to when and how patients should be allowed to die," she says in an e-mail.
More and more people appear to be taking the step of discussing with loved ones, church communities, lawyers, and health-care providers – both orally and in writing – their wishes when it comes to any gray areas, says Wendy Patrick, a San Diego-based prosecutor and ordained minister who is versed in multiple aspects of the debate. When people do this, she and others say, much of the decisionmaking is taken care of ahead of time, before emotion potentially clouds the case.
"We see in the scores of cases like these that happen, a family is thrust into a situation very suddenly where a loved one who was fine one day is now not fine at all," says Kathleen Powderly, director of the John Conley Division of Medical Ethics and Humanities at SUNY Downstate Medical Center in New York. "Since it didn't happen gradually, they haven't had any time to process the choices and what they might mean, so the pressure multiplies the stress."
But some things aren't gray areas: The standard for death has been set by policy and law, notes Boston College's the Rev. John Paris, a consultant to the President's Commission for the Study of Ethics in Medicine. "The statutes ought to prevail," he adds.
Still, sometimes the law faces opposition – most often from family members with other views on medical intervention or the definition of life. In those cases, the courts will decide, says Carole Lieberman, a forensic psychiatrist in Beverly Hills, Calif.
The decision will be based upon whether the attorney for the family or for the hospital brings the most compelling case, she says, adding that how persuasive a judge finds each side depends upon precedent set by case law and upon how convincing the expert witnesses are.
In Jahi's case, the hospital probably never anticipated that her family would take the issue this far, she says. "They expected the family to just accept the hospital's decision and go away quietly," she says via e-mail.
It is highly likely, she continues, that among other concerns, the hospital is worried that it "will never be fully reimbursed for the expensive treatment Jahi" was receiving.
Some cases head to court when there are different interpretations of the law. Also, states may differ slightly in how they handle these cases.
"While states have adopted very similar legislation on end-of-life issues, states remain 'semi-sovereign,' " says James Slack, a professor in the Robertson School of Government at Regent University in Virginia Beach, Va.
"What this means is [that] in any controversy where federalism may come into play, such as this, there can be some shopping around [among states] for the best deal," says Professor Slack, who made his comments in an e-mail.
The end-of-life discussion intersects, to some degree, with other hot-button issues in American society, especially abortion. But the abortion debate has gotten a much wider airing.
"We're finding as a society that we do have lots of discussions about the beginning of life, because of the abortion debate, but we are ignorant when it comes to the end of life," says Ms. Martin, the attorney.
"Personhood" is also somewhat connected to these issues. Some religious ethicists differ on how personhood is defined in a medical context and whether severely diminished personhood – as in the case of Terri Schiavo – provides justification for the termination of a human life, says Brett Wilmot, associate director of the ethics program at Villanova University just outside Philadelphia.
"If we accept McMath's diagnosis, then she's in a different category from Schiavo," who was not considered brain-dead, Dr. Wilmot says in an e-mail. Jahi's "ability to function as an integrated biological organism is utterly compromised; her basic biological functions would cease without ongoing and extraordinary medical intervention."
In a number of cases, however, individuals have revived after being declared dead, Ms. Patrick, the prosecutor and ordained minister, points out.
"There are enough of these cases to be statistically significant," she says, noting that in 2007, an Arizona man came back to life after being scheduled to have his organs removed for transplant. "And of course, all Christians know that Lazarus was raised after four days in the grave."
Rabbi Ed Feinstein, senior rabbi of Valley Beth Shalom in Encino, Calif., welcomes the opportunity to get God back in the dialogue. "In the Jewish faith, we recite a prayer on our High Holidays. It recognizes God as the one who decides 'Who will live and who will die.' In our time, these decisions are now in our hands," he says in an e-mail.
"Now, in so many instances, people die when we're ready for them to die," he says. "Someone has to decide to turn off a machine, or cease treatment. The problem is that our moral thinking has not caught up with the development of the technology."
Some individuals, including Wilmot, are asking broader questions about what constitutes life.
"As the role of human agency increases in such cases, ethics requires us to establish principles and standards to guide such decisions, and this forces us to reflect on the meaning of death in a context where it is now possible to distinguish between biological life (those normal biological systems and functions that together unite the human body as a single living organism) and our mental life – self-awareness, consciousness of one's surroundings, a capacity for responding to environmental stimulus, etc. – associated with the idea of being an individual person," he says via e-mail.
In Jahi's case, ethicists note two other factors. First, the hospital, by law, is prevented from revealing details of the case, and thus is probably hampered in its ability to clearly explain its side of things.
But the fact that the case is a high-profile one means that, for both sides, politics and public relations come into play.
"These cases are very complex, and don't translate well into the politically charged sound bites that get thrown around," says Mr. Camosy of Fordham University via e-mail. "Too often, the arguments are hijacked by those who are using the case as a proxy for arguing about something else – often abortion."
It's important who the audience is that's listening to the debate, says Slack of Regent University.
"Naturally the California hospital would have preferred to have a very limited audience: the hospital, the parents, and perhaps a priest," he says via e-mail. "But as the media picks up the story, and (most importantly) as the parents become unsatisfied with the presented remedy, the issue becomes 'socialized' in the hope that better, newer members of the 'audience' will side with the parents."