Science hasn't made it any easier to die; today advanced medical technologies can compound suffering in ways that earlier generations were spared.
Afflicted by a rare genetic condition that had already taken the lives of three members of the extended family, all five Russo children were checked regularly for symptomatic polyps. When Chrissy, the middle child, was 16, she was diagnosed as having a mutant variation of the condition that blanketed her organs with hundreds of polyps. Surgery provided relief. For 12 years Chrissy was relatively symptom free. She married. Then pregnancy seemed to trigger a recurrence and the beginning of a long downhill slide that began with the loss of the twins she carried.
In 1992, Chrissy lay dying at Beth Israel Hospital in New York City, not far from her New Jersey home. One of her doctors suggested an intestinal transplant, something the Russos weren't aware was an option. Though intestinal transplantation was highly experimental, it offered what seemed Chrissy's only hope for life. "We talked, and Chrissy agreed to it," June recalls, pinpointing the moment of choice "where it all started."
Chrissy, whose husband had abandoned her when her health deteriorated, was flown to the University of Pittsburgh Medical Center. "She came through the transplant," June says. But the family spent the next 2 1/2 years in limbo. Chrissy received countless blood transfusions and repeated surgeries that cost her insurance company more than $1 million, in addition to costs related to transplantation that were covered by research funds.
"We knew it was experimental surgery, but it was tragic from the beginning," June says. "At the end, she had raging infections; none of the medication was doing any good. She was on oxygen and dialysis. Her organs were going one by one. It was so bad." As June talks about the unrelieved stress of those years, she admits "the anger is killing me."
Nothing could have spared June and her husband Michael the suffering that parents endure when they witness the death of a child they have raised. But today advanced medical technologies compound this suffering in ways that earlier generations were spared and that families are ill equipped to cope with. Worse, families will make some of the most important decisions of their lives about what technology to use and how to use it while desperately anxious about loved ones and relatively ignorant of the technology's fine points and potential effects--for good and ill. They're not likely to have living wills or other advance directives--fewer than 15 percent of Americans do. They'll turn to a chaplain or pastoral-care person, expecting answers and insights, as well as solace, only to find that medical technology has outstripped any merely human capacity to clearly define appropriate action in every scenario.
We're mere mortals
Is the dilemma that medical technology presents in end-of-life situations one that can be resolved? Drawing on ancient and contemporary Christian tradition, theologians and ethicists have developed wise and insightful guidelines for medical situations when decisions must be made about the use of advanced technologies.
But is the dilemma essentially technological, or is the contemporary medical setting merely one of this century's settings for our most ancient and intimate struggle with our vulnerability, our humanity, and our mortality?
As Daniel Callahan, president and cofounder of the Hastings Center and distinguished medical-ethics expert, says in his book The Troubled Dream of Life: In Search of a Peaceful Death (Georgetown University Press), modem medicine appeals "to our hopes and our desires as much as to our minds.... [its power] resides in its almost magical possibility of offering us a relief from biological necessity, granting us new powers to manage our fate and our destiny, presenting an image of unlimited hope, genuine knowledge, and great progress. It assumes the possibility of dominating, manipulating, and redefining nature and its potencies. This is a powerful and compelling image to a self all too conscious of its fragility."
On one hand, it seems the medical community is to blame for much of the problem. Doctors traditionally associate death with defeat. They're poorly trained, if trained at all, in bedside manner for dying patients. Studies show that even training in the kind of pain management that could alleviate apprehension about the dying process is sorely lacking. What physicians can offer are seemingly endless choices that allow them to defer or elude the moment when there's nothing else to offer.
But patients and families themselves are often as ill prepared to arrive at that moment, says David F. Kelly, professor of theology and medical ethics and director of the Center for Health Care at Duquesne University in Pittsburgh and hospital ethicist at Saint Francis Medical Center in Pittsburgh. "For every case where doctors offer endless choices," he says, "I can tell you of a case where a family wouldn't let go and demanded more."
As director of the Department of Pastoral Care at University of Pittsburgh Medical Center, a massive hospital conglomerate that is known internationally for its transplantation, cardiology, orthopedics, oncology, and general medicine, Father Sam Esposito sees it all.
It's not unusual, he says, for patients to find themselves on a conveyor of what is actually extraordinary care that they have every right to refuse. But they may not know that.
Catholic ethicists, such as Sister Jean deBlois, C.S.J. and Rev. Kevin D. Cyrourke, O.P., J.C.D., who have written about Ethical and Religious Directives (ERD) for Catholic Health Care Services, date the use of the terms ordinary or extraordinary to the 17th century and stress that the terms make ethical and moral, rather than medical, distinctions. What is considered ordinary for a person who has a decent chance of recovery might well be extraordinary for a person whose chance of recovery is less. Ideally that decision would be made by the individual, and often it is.
Catholic tradition demands only that ordinary means--that offer reasonable hope of benefit and are not an excessive burden on the patient--be taken to preserve life.
To prepare for such an event, many people prepare advance directives, in the form of a living will or a durable power of attorney for health care. The first and most important thing that advance directives do, Kelly says, is get people talking to each other about what they want if they become incompetent. Sometimes, talking is enough.
Pat Fenton, 50, was with his mother, brother, sister, in-laws, aunts, and uncles at his 91-year-old father's bedside last summer, allowing the family patriarch to die. Months earlier, Pat says, his father had been rushed to the hospital, where doctors insisted that he would die without immediate surgery. "Dad refused surgery and was back home within two days." But in July, the family was faced with a similar situation. "Dad was no longer conscious; but because he had told us a few months earlier that he didn't want surgery," Pat says, "we knew we should reject that option." Even though the family didn't have a written directive, they had a strong sense of the patient's wishes, and those wishes had been expressed recently enough to be credible to attending health-care professionals.
Advance directives address a competent patient's constitutional right to refuse medical treatment, including artificial nutrition and hydration, but different forms of directives address different functions. A living will, signed by an individual and a witness, can give direction about treatments to administer or withhold if you are incompetent and about termination of life support.
A durable power of attorney for health care appoints someone to make medical decisions on your behalf and only comes into play if you are incompetent.
Advance directives are compatible with Catholic theology and ERD for Catholic Health Care Services and urge avoiding two extremes: "an insistence on useless or burdensome technology even when a patient may legitimately wish to forgo it and, on the other hand, the withdrawal of technology with the intention of causing death."
But what if a patient is already on life support and will die if life support is removed? ERDs state that "death occurs because a fatal pathological condition is allowed to take its natural course, not because those who have removed life support intended to kill the patient. Rather, their intention is to stop doing something useless or to stop imposing a burden on the patient."
On the day that Pat's family refused surgery for his dad, they also had to make a decision about medication. The elderly man was in extreme pain, but administering the dosage of medication necessary to alleviate the pain would suppress the man's respiration and hasten his death. Should the medication be administered anyway?
Guided by a certain sense of inevitability, the family nodded agreement. ERD would have concurred. "Medicines capable of alleviating or suppressing pain may be given to a dying person even if this therapy may indirectly shorten the person's life so long as the intent is not to hasten death."
"Catholic tradition is pretty balanced on these issues," Callahan says, even though there is mixed opinion about the use of feeding tubes. Some U.S. bishops and a minority of Catholic theologians, wary of a slippery slope toward euthanasia, take a position toward artificial nutrition and hydration that is even more conservative than is advocated by ERDs.
Callahan suggests that such positions encourage rather than discourage tolerance of euthanasia, which, according to every recent study, is on the increase. "People don't want useless, futile treatment and ultra-conservative statements generate fear that the medical community won't be allowed to give up on them."
Are advance directives adequate response to advanced medical technologies and the agonizing choices they can present, as well as a guarantee of death with dignity?
"Advance directives are quite helpful, but not in the way people think," Kelly says. "If people think they will solve the matter and eliminate complexity, they don't." On the contrary, "they can advance the sense that we are in control of absolutely everything, and we simply are not."
The primary benefit of a proxy directive--a durable power of attorney--is to help avoid imposing an overly heavy burden on loved ones.
Theologically, naming a proxy is less an act of "control" than an indication of trust. "You're acknowledging that you will not have control and that you have to trust someone," Kelly says. "Advance directives give some level of control over who decides, but that control is based on trust."
On the other hand, living wills, especially those that contain detailed, explicit instruction about many levels of treatment, foster a sense of solving a problem, Kelly says, when, in practice, the situations they describe "almost never happen."
What we need to pay attention to in living wills, he says, is the underlying message: please don't do stupid stuff to me. Nobody wants stuff done for them that isn't going to do any good."
Jesuit-trained Jerry Voros has considered every possible health-care decision that he will be forced to make for his wife Carla, who has been bedridden for four years, almost completely paralyzed and unable to communicate. A tube that was inserted to enable her breathing rendered her speechless, and severe palsy prevents her from writing or even using block letters to express herself.
Jerry has completed and filed a living will and durable power of attorney for health care--he keeps a copy at home, with Carla's physician, and with the hospital where Carla is most likely to be treated. But Jerry's sense of control seems no greater than June Russo's.
Carla was only 51 when she began having problems with depth perception and began tripping and falling. Her youngest son, 15-year-old Matthew, remarked to Jerry about Mom's "terrible driving," but, Jerry, busy with his job as president of Ketchum Communications, missed or dismissed symptoms.
Ultimately, Carla's instability was attributed to an incurable degeneration of the cerebellum that would incapacitate her. By the time she was 60, Carla was confined to a wheelchair and had trouble swallowing.
Today Carla spends her days on an air mattress in a hospital bed set up in the living room of the city apartment she and Jerry occupy. Retired now, Jerry helps care for Carla, but except for the one or two midnight shifts each week when he keeps watch alone, nurses are constantly present, turning Carla, reading to her, and talking to her about their lives, even though she can't respond.
Carla is probably alive only because of the seemingly extraordinary care that Jerry is able to provide. Without it, any complication would have killed her. But is it a life that can or should be lengthened?
There was a time when Jerry and Carla might have said no. They agreed that Carla would never be placed on an artificial respirator. Nevertheless, the need arose while Jerry was on a business trip, and Carla was rushed to the hospital and diagnosed with pneumonia. "They just did it," he says. He pauses. "Some would have pulled the respirator. That would have been a loss to me. I don't know what it would have been to Carla. At times like that, your desire to live outweighs any consideration of how you will live."
In a voice tinged with humor rather than regret or self-pity, Jerry describes the home he retired to: filled with people he wouldn't necessarily choose to have around all the time and a life with no privacy.
"To me, there is no alternative to caring for my wife," he says. "We are social beings. We must help each other." But without Carla, the stabilizing fabric of Jerry's life would be gone, he says. "It's frightening to think of being alone. What would I be doing if I wasn't doing this?"
Should Chrissy and her family have accepted so many treatments and fought so hard for almost three years? Would it have been less painful in the end, cheaper, and theologically acceptable if Chrissy had been allowed to die sooner?
"You can ask yourself till you're green," June Russo says. "It bought her three years. The quality was bad. But it was life. She never faltered. She accepted those years and never complained. How can I?"
Advanced medical technologies sorely test our capacity to make wise choices--whether to refuse or accept treatment, and how to weigh benefits and burdens. Esposito suggests that a new American tradition would help: "Talking at the Thanksgiving dinner table about what we would want."
"People need to talk to each other about what they would want," Esposito says. "This shouldn't be something that you look at for the first time when a family member's been in the I.C.U. for 145 days and a social worker walks in to talk about options."
Ideally people will prepare, Kelly says. "Spiritually: pray a lot. Financially: get your affairs in order. Medically: name a proxy, and tell that person what you would want. Make out a general living will; talk this over with your family and your physician."
Whether or not we are prepared, end-of-life issues have the greatest potential for throwing us headlong and fully armed with denial into face-to-face conflict with our deeply lurking terror of what we do not know and cannot control.
But within that darkness is an invitation to explore freedom that is not grounded in a capacity to control, and the chance to choose faithful self-possession that redeems what it cannot change.
"Fragility is our human condition," Callahan writes. "To attempt to remove that sense of threat once and for all, to intimate to another that such suffering need not be borne, is to cut the very soul out of human life."
Our spiritual task remains to look unblinking at the fearful people that we are and to relinquish the power we only thought that we had. In that act is our dignity and grace.
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|Title Annotation:||includes information on living wills and end-of-life procedures|
|Date:||Jul 1, 1996|
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