"It was a case," Ex College Professor Ronnee Yashon said contemplatively, "that brought this issue to life." Yashon's word choice is striking, given that the issue in question centers on the end of life - specifically, the end of the life of Terri Schiavo, whose media-drenched case prompted members of the college-age population to think seriously about what they would want if they were in Schiavo's situation.
"Some of my students talked to their boyfriends about this," added Yashon, who teaches Tufts' "Genetics, Ethics and the Law" course. "They said, 'What would you want?' and talked about it - and that's good enough [to constitute a living will] in most states!"
"It was in the news all the time," said junior Greg Mehdi, who discussed the case both in class and with his friends. "If I were in Schiavo's situation, I would totally want the plug pulled."
For the college crowd, confronting death might seem like an unnecessarily morbid pursuit. But students' young age doesn't guarantee them distance from end-of-life issues, according to Tufts affiliate Alissa Spielberg, who taught an Ex College course last spring called "Sex, Drugs, and Personal Rights: The Frontiers of Law, Medicine and Society," and who is currently teaching a course in the community health program called "Health, Ethics and Policy."
"Many of these cases tend to occur with young people, because the older people are often more prepared [for death]," Spielberg said, adding that Schiavo was only in her 20s when she entered a persistent vegetative state (see box). "It's not just, 'Oh, what do we do for Grandma with end-stage cancer?' The Schiavo case really did bring the point home."
It certainly did for Mehdi. "When they started talking about living wills and health proxies [on the news], they would always mention the young people, in terms of, 'Well, the old people have usually taken care of things. This kind of controversy happens more with the young people who, like, fall off a ladder and enter a coma,'" he recalled.
"There are so many ways in which these issues can come up: somebody could go to a party and get alcohol poisoning and go into shock; someone could trip and fall and go into a coma," Spielberg concurred.
And should that happen while you're living in Massachusetts, there's only one way to make sure that the treatment you receive is the treatment you'd want to receive: having a designated health care proxy - someone whom you've granted the authority to make medical decisions on your behalf. Living wills, sets of instructions for how you'd like to be treated if incapacitated, aren't officially recognized in Massachusetts.
In cases where individuals leave no written instructions, some states allow word-of-mouth to stand as a living will. "The principle goes back to the landmark Cruzan case, which allowed states to rely on 'clear and convincing evidence' in the absence of a written directive," Spielberg said.
Missouri resident Nancy Cruzan sustained permanent brain damage in a car accident in 1983 at age 25. Her parents, citing comments made by their daughter, requested that her feeding tube be removed in accordance with her wishes. The hospital refused to comply. After many court battles, it was ultimately ruled that Cruzan's comments were "clear and convincing evidence" of her wishes, and her tube was removed in 1990.
"So, it's not that an oral directive is valid in itself, just that it may be valid if its existence and force are determined to be clear and convincing through an evidentiary process," Spielberg added.
"In essence, since it requires this kind of proof," Spielberg added, "it's not really an effective or efficient method of leaving advanced care directives" - something the Schiavo case proved. In that case, the major point of contention was whether or not Schiavo had told her husband her end-of-life wishes - in effect, creating a living will. "She supposedly told her husband once or even twice that she didn't want [to be kept alive on a respirator], but no one else could verify it," Yashon said.
Sophomore Erica Lee finds letting word-of-mouth stand as a living will to be problematic, especially in cases involving young people. "Schiavo was young, and at that age, we all have tendencies to say, in passing, 'I never want to live my life like that' or 'I never want to get old,' but we don't really mean it," Lee said, adding that "for some comment like that to be carried over and have real consequences is not something we really want to think about."
Problems of another sort may arise when a person's living will is contested - or when medical professionals cannot find it or refuse to follow it. "My mother had a living will: it said she didn't want to be resuscitated," Yashon said. "When she died, the paramedics were there, and they were resuscitating her."
Though Yashon told the paramedics that according to her mother's living will, they should stop, they wouldn't do so until they physically saw the document. "They wanted to see it before they would stop, because if they stop, then they're liable," she explained. "Well, we had the living will right in her house, so they did stop," she added.
Having a designated health care proxy eliminates some of the problems associated with living wills. "The health care proxy has taken the place of the living will, at least in Massachusetts," Spielberg said. "If you have a living will, you're giving somebody instructions for a situation that you might not be able to completely anticipate, whereas if you give somebody a health care proxy, the proxy gets to talk to your physician, hear what all the experts say, and try to make a decision that comports with what you would do."
Most college students are older than 18, and are therefore able to designate a health care proxy under Massachusetts law. For individuals under 18, though, "unless there's some sort of court-appointed situation, it's automatically your parents or guardians" who make medical decisions on your behalf should you become unable to, Spielberg said.
"If you're under 18, I don't care what your boyfriend says, it's not going to make any difference - your parents have a right to do whatever," said Yashon, referring to cases in which the significant others of comatose patients without written living wills have contested the patients' parents' wishes for their children.
It's natural, Yashon said, for parents put in such situations to want to keep their children alive. "You can understand how, if someone's in an accident when they're 19, 20, their parents don't want to shut them off - they're hoping beyond hope," she said, adding that, as the Schiavo case illustrated, "once somebody is hooked to a respirator, it becomes unbelievably complex to shut them off."
Unbelievable complexity, it seems, is a hallmark of end-of-life issues - and both Spielberg and Yashon feel that the images of Schiavo that flooded the media muddied the waters further. "The press fueled this by showing the pictures of her with her eyes open," Yashon said. "We think of coma patients as lying on their beds with their eyes closed, but that isn't necessarily the way things are."
"It's not clear to me that she - given what we were told about her, that she was somebody who was concerned about how she looked and how she appeared - would have wanted to have her face plastered all over the media outlets in that condition," Spielberg said of Schiavo, who was reportedly bulimic.
"On the other hand," Spielberg added, "the images did raise awareness" - an awareness that, for college students, may be an uncomfortable one. "It's very tough, because this age group tends to believe it's invincible, and that these things happen to other people," Spielberg said.
Lee and Mehdi's words substantiate Spielberg's assertion. "It's hard for people our age to believe that at some point an event might make a decision like that necessary," Lee said. "When you're young, you're not thinking about [death] - there's that 'I'm an invincible young person' thing," Mehdi agreed.
"But maybe," he added, "people just need to get over the morbidity of it. The idea of being in a position where you're unable to refuse a treatment because you're unconscious..." He trailed off. "It's not right. You have the right to refuse treatment [under Massachusetts law], and it's sad that, if you go into a coma before telling anybody your wishes, nobody's gonna unplug you."
Mehdi clearly has strong feelings on the subject - and as such, is the kind of individual Spielberg recommends think seriously about designating a health proxy.
"If you strongly feel, 'I'm the kind of person who wants everything done [to save me], no matter what,' or 'I'm the kind of person who doesn't want to be hooked up to machines' - then yeah, maybe it is the time," she said.
Spielberg recognizes, however, that not every college-age student is psychologically prepared to take that step. "If the idea is difficult for you to actually approach, then maybe you don't want to do it," she said.
But she adds that discussion of living wills and health care proxies within the college age bracket is by no means purely theoretical. "I had a student last year who had a number of disabilities," Spielberg remembered. "She talked about having a health care proxy, because she was told repeatedly over the years that she might not make it, and so she wanted to be clear about what she wanted."
