UMaine bioethicist works with those on the front lines grappling with end-of-life issues
When 41 year-old Terri Schiavo died this past March, 13 days after her feeding tube was removed and 15 years after brain damage left her in a persistent vegetative state, the nation was watching. Millions of people, whether proponents of right to life or death with dignity, will never look at end-of-life issues the same way again.
That’s good, according to medical ethicist Jessica Miller. “There is a sense of being able to overcome anything that sort of permeates American culture,” says Miller, a University of Maine assistant professor of philosophy and the clinical bioethicist for Eastern Maine Medical Center in Bangor.
“It’s difficult for people to allow the end of life to occur, either for themselves or their loved ones. Some of the doctors I work with say that until we have a national conversation about death and our mortality, we are never going to resolve these problems.”
In her experience, people who believe in an afterlife aren’t necessarily more willing to let go of this life than those who believe this is all there is. And the end-of-life decisions are often more difficult than they used to be.
“Death has become much more complicated in many ways,” says Miller, who studies the moral and ethical issues in medicine and medical research. “For one thing, we now have two different criteria for death. One is the traditional cardiopulmonary standard: If your heart stops and you stop breathing, you’re dead. The other standard is brain death. This became possible because people could be maintained on ventilators after all brain function has ceased, and it facilitated organ procurement and donation.”
The medical community accepts both definitions of death. But for the family of someone who is breathing–even if the breathing is being done by a machine and there is virtually no chance of recovery–it can be excruciatingly difficult to “pull the plug.” It can be just as hard to withhold nutrition and water from someone who is in a persistent vegetative state or to refrain from performing CPR on a terminally ill cancer patient who has a heart attack.
Families often look to physicians or chaplains for guidance in making end-of-life decisions. Some of those decisions, such as whether to withhold treatment or remove a feeding tube, are fraught with ethical dilemmas. Miller’s role as a bioethicist isn’t to tell hospital physicians and staff what is right and wrong. Rather, she says, “I try to help them identify ethical issues and educate them about different ways of reflecting on ethical problems.”
Her point is that no one has a lock on moral or ethical truths.
Miller teaches ethics and bioethics at UMaine, and that makes her an especially valuable resource for hospital physicians and staff, says Rex Garrett, director of Chaplaincy Services at Eastern Maine Medical Center. “It is important to have someone from the academic arena, where both the old discussions and the current discussions are active and alive,” he says. “Having that body of knowledge behind her, she can bring in the conceptual reality to help us understand the practical realities.”
Every other month, Miller participates in the hospital’s Bioethics Grand Rounds, an educational session in which clinicians present an actual case for a panel to discuss. In alternate months, Miller leads an ethics reading group that often includes physicians, nurses, social workers and chaplains.
“Sometimes we don’t even get to the literature we had planned to discuss because a physician will come in and start talking about a case that is bothering him (or her),” Miller says. “Or something is troubling a nurse, but she (or he) isn’t sure it should be a real concern. I facilitate the discussion and try to help them figure out what their uneasy feelings reflect and what ethical values are at stake.”
Having someone to help clinicians grapple with complex ethical issues is much more important than it was even a generation ago, says Dr. Erik Steele, chair of EMMC’s Code Committee and chief medical officer for Eastern Maine Healthcare Systems, which includes the medical center. “One reason is that our ability to keep people alive has outstripped our ability to make them well,” he says.
“Also, for the past 20 or 30 years, people have had more interest in being able to make decisions about their care, including end-of-life care. So, there is an increasing role for somebody who can help guide us through the ethical, legal and clinical minefields of end-of-life decision making. If I could have an ethicist and a lawyer in my pocket when I make rounds, that would be great. That’s how often things come up.”
Steele estimates that at least 80 percent of the ethical dilemmas that arise at Eastern Maine Medical Center involve end-of-life issues. Part of the reason is simply that the population is aging, and more people than ever are approaching the end of their lives.
“But it’s also because death is so final,” Steele says. “You know that if you make the wrong decision, it can have tremendous repercussions, so you work extra hard to get it right.”
Steele says that anyone who would like to die in a way that doesn’t require the involvement of a bioethicist should have a living will or other type of advance directive.
“When it comes to end-of-life decision making, I think Dr. Miller would like to be like the Maytag repairman,” he says. “The day when no one needs her help with that would be a good day.”
More and more people are seeking to avoid being kept alive by artificial means against their will and, at the same time, to relieve their families of the burden of making end-of-life decisions for them. By filling out an “advance health care directive,” a person can, Miller says, “project their autonomy into an incapacitated future.”
The most common type of advance directive is a living will. It enables people to detail which treatment measures, if any, should be taken to keep them alive if they become debilitated and unable to make decisions or communicate their wishes. Living wills are adequate in most cases, but they do have shortcomings, Miller says. They don’t always eliminate uncertainty or guarantee that one’s wishes will be followed.
“Primary care physicians are being encouraged to have young, healthy patients get living wills, but it’s very hard for young people to know exactly which treatments they might want under certain conditions when they are older,” she says. “Also, some living wills offer sort of an a la carte menu, so you can specify, ‘Yes, I want CPR. No, I don’t want antibiotics.’ However, a choice like that could put a hospital medical staff in a bind because it might not make sense to resuscitate a person if they can’t administer antibiotics to prevent infection.”
Doctors and hospital administrators can find themselves caught between the wishes of a patient, as expressed in a living will, and a relative who, as Miller puts it, “advocates forcefully in the moment” for doing everything possible to keep the patient alive.
A better type of advance directive, she says, is the durable health care power of attorney, a legal document that names a proxy to make decisions on your behalf if you are unable to do so. It invests one person with the authority to give physicians and hospitals clear direction. However, if you want that direction to reflect your wishes, Miller says, you need to make sure your proxy knows what your wishes are.
“Whether you have a living will, a health care proxy or just an order about whether to perform certain life-sustaining measures, nothing really takes the place of thinking for yourself and meditating on what life means to you and under what conditions you would want to receive treatment,” she says. “Then communicate that to your loved ones and physician.”
Nothing that a person does in this life–drawing up a living will or giving someone power of attorney–can guarantee that family members or close friends won’t argue about end-of-life decisions. Miller recalls a case in which two sisters had been taking care of their elderly mother for years before her condition dramatically worsened. They decided it was not in their mother’s best interest to have more aggressive life-sustaining treatment and that she would not have wanted it.
“Then their brother flew in from another part of the country and said they were just being blinded by their exhaustion and motivated by a desire to be relieved of care-giving,” Miller says.
Even if the mother had not designated a health care power of attorney, a living will could have been helpful. “A living will at least gives people a starting point,” Miller says. “They can see what your wishes were when you were of sound mind and not incapacitated. Then, more often than not, a discussion in which everybody has a chance to have their say produces consensus if not unanimous agreement.”
Since April, EMMC and the other hospitals of EMHS have offered advance directive forms on the Web (www.emmc.org). At last count, more than 10,000 had been downloaded. Maine residents also can find forms on the attorney general’s site (www.state.me.us/ag/).
Originally published in UMaine Today magazine, September/October 2005
Image Description: Jessica Miller