As medicine advances, the choices associated with end-of-life care grow more complex — especially when patients or their families clash with doctors, the state, and occasionally each other, over when to treat and when to let go.
By Susan Lonkevich
Dr. Neville Strumpf, associate professor in Penn’s School of Nursing, is musing over a topic that has troubled her during her more than 25 years in nursing. “We never talk about ending lives — I mean ending them well,” she says. “Instead, we talk about saving them, or intervening, or buying time. There’s a language of promoting cure or continuing to intervene as opposed to doing what’s reasonable. What kind of quality of life, what kind of level of function are we trying to promote and advocate?” Strumpf asks. “Those will be the crucial issues in the 21st century.” Already, they are at the heart of increasingly frequent debate in the courts, in hospitals, and even within families.
Dying was once a relatively quick and private affair. Unencumbered by pickets and court battles, respirators and release forms, it was pretty much left up to the Fates or divine power. Until about World War II, when a person got sick, he or she either recuperated or passed away — almost always at home. Today, when people die, it’s usually in a hospital or nursing home, and many critically-ill patients can be sustained for months, even years, linked to a labyrinth of tubes and equipment.
Raising awareness of how we exit life and how we can better care for the terminally ill was the goal of a two-day conference, “Families on the Frontier of Dying,” hosted in June by the University of Pennsylvania Health System’s Center for Bioethics. Dr. Arthur Caplan, the center’s director, and Dr. Sally Nunn, associate director of its outreach program, were co-chairs, along with Dr. Ronald Cranford, of the Center for Bioethics at the University of Minnesota. But just as the conference title suggests, the spotlight fell not on the experts, but on the families — some involved in landmark court cases and others who spoke publicly for the first time about their experiences. Despite their varied accounts, some common themes emerged, notably the need for better communication from doctors, education for judges about what it means to be terminally ill, and medical decision making centered around patients and families. Perhaps most of all, their stories illuminate our society’s conflicted attitudes toward dying.
Nancy Cruzan’s gravestone is marked with three dates. In between the day she entered this world and the day she died is the day she actually departed: January 11, 1983. That was the day, says her sister, Chris Cruzan White, that “I got that phone call — you know, the one that shapes your life forever, the beginning of a nightmare.”
It was a car wreck. Although emergency personnel were able to restart Nancy Cruzan’s heart, the attending physician remarked that he was concerned about enoxia. Later, a nurse provided the plain-spoken translation: she had gone too long without oxygen. Four years would pass, however, before the family fully understood and accepted the consequences — that this once “bubbly, vibrant, and independent” woman now existed in what in medical terminology is known as a “permanent vegetative state.” They knew that Nancy would not want to be kept alive like this.
But in May 1987, when the Cruzans requested removal of her feeding tube, hospital officials refused to comply without a court order. The family took the case to the Missouri Supreme Court, and then to the U.S. Supreme Court. It was only after an unrelated acquaintance of Nancy provided supporting testimony, says White, that a lower court judge allowed her sister to “die with dignity.”
Inside her hospital room, on December 26, 1990, Nancy Cruzan finally did die, but not without the world watching and commenting. Outside, Operation Rescue protesters ringed the building with signs reading “Murder or Mercy?” and “Feed Nancy.”
The landmark Cruzan case — and that of Karen Quinlan a decade earlier — placed the dramas of dying patients and their families on center stage. But as some of the cases below illustrate, dying is still “not what it should be in the United States. It’s too painful, too isolated, too impoverishing, and too terrifying,” says bioethicist Caplan. “All too often it takes place among strangers without good family or spiritual support, and most dying is done today in intensive-care settings far removed from familiar surroundings. We know all this, yet we seem unable to fix it.”
Theresa Blake’s son, Anthony, was born in 1985 with hydrocephalus, an accumulation of fluid in the brain. During his short life he would be diagnosed with 14 different diseases, from apnea to cerebral palsy. At first she aggressively pursued treatment for her son, choosing to care for him at home — even suctioning out his lungs herself — rather than put him in an institution. Anthony couldn’t walk, speak, or hear, but when he slept, she says, he looked just like an angel.
By age seven, however, he was hospitalized with a feeding tube, ventilator, and tracheostomy tube. Blake had done some research on her own, and after realizing what doctors had not told her, that Anthony was in a vegetative state with no hope for recovery, decided it was time to shut off all artificial support. But a child protection agency secured a court order to block her. Even when that order was reversed, the hospital insisted on maintaining Anthony’s feeding and tracheostomy tubes. One day, in desperation, Blake threw herself over her son and begged to be allowed to take him home to die. Instead, he lived in this “medical limbo,” as she calls it, until age 10.
Just three hours before he died, the hospital decided to stop feeding him. First they made Blake sign a form saying she wouldn’t sue. Then they led her to his room, requesting that she leave in his tracheostomy tube. Blake holds up her accomplice from that day, a shaggy, orange-haired puppet named Alf, and explains how three minutes before Anthony died, she removed his tube and put it in the puppet’s mouth, then held Anthony in her lap. As he died, angelic and finally unfettered, Blake says, “I told him this was the only dignity I could give him. I hoped it was enough.”
“It’s been said that there are only two things that motivate Americans: the accumulation of money and fear of cancer,” says George Annas, director of the Law, Medicine, and Ethics Program at Boston University’s School of Public Health. “I would argue that the two things that motivate physicians are the accumulation of money and fear of lawsuits.” Behind his confrontational claims lies a concern that the medical establishment is obsessed with securing legal immunity, sometimes at the cost of easing dying patients’ suffering.
Caplan says the fears are justified, however, considering the threats that today’s doctors face, from “getting arrested because you use too much narcotics” to reduce pain to “legal worries that you can’t stop treatment if there is no obvious guardian. [Doctors] have to have some assurance that they have the ability to use their medical judgment when things are futile, hopeless, pointless, or painful.”
Another reason some patients linger past the point of return, Annas says, is that we live in a youth-obsessed, death-denying society. “People don’t believe in death at all in this country and somehow believe it is optional.”
Dr. Terry Richmond, GrN’95, assistant professor and director of the adult acute/tertiary nurse practitioner program at Penn’s School of Nursing, has a similar view. “Instead of seeing death as a part of life, we see it as something mysterious that we hold off into the distance,” she says. And although Richmond believes that patients and their families share with health-care providers the same desire for dignified treatment at the end of life, she believes the road often parts when it comes to attitudes about the meaning of death. “I hate to say this, but I think health-care professionals — both physicians and nurses at times — continue to see death as a failure after striving so hard, for so long, to prevent it. I think some of us have broadened the definition of what it means to be a healer in the technological age. One hopes that we can grow from that.”
What sometimes happens, though, says Dr. John Hansen-Flaschen, INT ’82, associate professor of medicine and chief of the pulmonary and critical-care division of the Hospital of the University of Pennsylvania (HUP), is that doctors provide the care that they think the families want “because the families push and push them. Then the person dies two months later and the family remembers it the other way. Sometimes while the crisis is unfolding,” he says, it’s hard for families and doctors to look “past that trajectory and shift the gears to letting go.”
While some fault doctors for fighting too hard to preserve life, others fear that they’ve become too eager to give up on patients. A growing number of hospitals, including HUP, have begun to adopt futile-care policies to spell out instances in which doctors could limit or discontinue treatments which they consider futile, even over the objections of families.
HUP has never enforced its six-year-old policy, but Dr. George Isajiw, a physician at Mercy Catholic Medical Center in Lansdowne and a consultant to the Delaware County Pro-Life Coalition, warns that such documents mark another step toward euthanasia. “We are on a slippery slope,” he says. “We are about ready [as a society] to accept physician-assisted suicide.”
Despite the publicity that end-of-life conflicts continue to generate, only about one-fifth of adults have created advance directives indicating what medical treatment they wish to receive or have withheld — or naming a person to make decisions for them — if they become unable to speak for themselves. But even advanced directives are not the solution many initially hoped they would be. “They let us know who this [patient] is, what they value, and they give us a foundation for discussions with families,” says Richmond. “But they did not take away the basic angst of making those decisions, because every situation is unique and different.”
That’s why, Richmond recommends, “We should be having ongoing conversations and discussions, not just at the end of life, but throughout an individual’s life. What I always tell people is, ‘You should be having dinner conversations about this with your families and neighbors, so when the time comes, we’ve had these discussions.'” Richmond has been shocked on occasion by the end-of-life wishes of people whom she thought she knew well. “My next-door neighbor is a neuropsychologist [who deals with] head-injury patients. I’ve always said that if I become persistently vegetative, stop all my feedings and let me die. Give all my organs away. He wants to be maintained forever in case they find [a cure].”
Sometimes, of course, there’s no chance to consult because parents are dealing with the death of a young child or infant. Losing a child is tragic under any circumstance, but when the family is criminalized, it compounds the tragedy, as one Lansing, Michigan, couple experienced. Before they could begin to properly grieve over the death of their newborn son, they had to clear themselves of murder charges.
The year was 1994. Traci Messinger, who had undergone two Cesarean sections with her previous pregnancies, experienced additional complications in her third pregnancy. She and her husband, Greg, were warned that if their baby was born at that point — 12 weeks prematurely — he would have little chance of surviving; if he did, he would be in for a life of operations and blood transfusions. They told the neonatologist that they didn’t want their baby to be resuscitated under those circumstances. Unbeknownst to the couple, the neonatologist signed herself out of the hospital that night, leaving a physician’s assistant in charge of their case. She left instructions to “resuscitate anyway” if the baby appeared vigorous.
Traci Messinger went into severe respiratory distress, and soon after, Michael Ryan was delivered. And though he was not vigorous, the physician’s assistant attempted to resuscitate him against their wishes and had him hooked up to a respirator. When Greg visited the baby, he was horrified. “He was blue-gray, he was in a prone position, he was lifeless,” he recalls, his voice quivering with anger and grief. “I said, ‘Please take him off the respirator.'” The physician’s assistant replied that she didn’t have the authority to do so, and that he would have to wait for the neonatologist to return. The couple was taken over to see the infant later, because he was going to die. As Greg handed Michael to his wife to hold and comfort, the movement set off the alarms for the respirator and other machines hooked up to their son’s tiny body. He stepped out in the hallway and asked a nurse to disconnect the alarm so they could quietly say good-bye.
There was little opportunity to mourn. Soon after Traci was released from the hospital, the CEO called to explain that detectives were investigating their baby’s “murder.” The case went to trial and a jury took three hours to acquit the couple.
Though the Messingers’ case is an extreme example, judging from the experiences of some families, physicians need to learn to communicate better with dying patients and their loved ones, not only about prognoses but about their options, and their hopes and fears. They would do well to emulate the bedside manner of Dr. Steven Miles, a geriatrician and bioethicist at the University of Minnesota. Despite doctors’ cries of time constraints in the age of managed care, Miles says, “I’ve never noticed that I’m able to save time by avoiding a conversation with a patient or family member. And the research shows that the effects of a single conversation are extremely therapeutic and long-lived.”
Of course the way doctors communicate is just as important as the fact that they take the time to do it. When interacting with dying patients, notes Miles, “There are two kinds of discussions: ‘Joan, your cancer has progressed. Would you want to refuse a ventilator?’ It’s a stupid discussion,” he says, because it makes the patient feel as if she will be abandoned unless she elects as much treatment as possible. A better approach, he says, would be to say, “‘Your lung cancer seems to be progressing. What’s the most important thing to you right now, because I’m going to continue to be your doctor. How do you want me to take care of you?'”
Dr. Bernard Kaplan, a pediatric nephrologist at The Children’s Hospital of Philadelphia and a faculty member at the Center for Bioethics, chaired the ethics committee at CHOP when conjoined twins Angela and Amy Lakeburg came to town. Born in Illinois in 1993, they were brought to CHOP to be surgically separated at their parents’ request. Because the single, six-chambered heart that the twins shared wasn’t strong enough to support them both, one had to die to give her sister a chance to live. The surviving twin, Angela, eventually died within the year, and the ethical implications of the surgery absorbed pundits and policy-makers in vigorous debate.
But Kaplan doesn’t want to dwell on the news-making twins now, except to complain about the intrusion of outsiders. “The conjoined twins were freaks of nature in the eyes of everybody,” he says, his South African-accented voice rising in indignation. “And everybody who read, and everybody who talked, and everybody who wrote, and everybody who watched television about these little babies were voyeurs.”
Kaplan doesn’t want to discuss the cost of their surgery, because then, “we’re going to have to start talking about the cost of transplants and dialysis and congenital heart disease and leukemia and metabolic disorders — Who will draw the line?” Nor does he want to talk about the futility of their separation, because “the only way surgeons can learn [these procedures] is by doing it.” What Kaplan prefers to speak of, instead, are his principles for patient care, which include allowing parents to become intimately involved with medical decision-making for their children and supporting them regardless of their choices. “I believe the disease belongs to the child and his family, not to doctors and society.”
Framing the same argument another way, Dr. Marcia Angell, executive editor of the New England Journal of Medicine, advocates a hierarchy of medical decision-making, with patients and their families — in consultation with their doctors — occupying the top two tiers, and the institution and the state below them. Problems arise, she says, when an entity lower in the hierarchy prematurely assumes the power of an entity above it.
But putting difficult cases in the hands of families is not necessarily the answer, others suggest. In a case that was still unfolding at press time, two sisters — both granted decision-making authority under a power of attorney — were embroiled in a dispute over whether to continue aggressive treatment for their 86-year-old mother, a patient on life support at HUP since February.
Julia Lieberman has pneumonia, dementia, and bone-deep skin ulcers. She occasionally mouths a word or two, though doctors say they can’t understand what she’s saying. But she does not talk. She does not walk. She breathes through a ventilator, eats through a feeding tube, and about once a month gets sent to the intensive-care unit for treatment of an infection or a stomach bleed or to be resuscitated.
HUP’s pulmonary and critical care chief, Dr. John Hansen-Flaschen, says the staff believes she feels pain, because she “grimaces and winces when we suction fluids out of her trachea or when we roll her over to change dressings, or stick in an intravenous line. It’s a slow death,” he says. “When people are executed one piece at a time, we call that torture. That’s what it feels like to us when we do this to somebody.”
One daughter, Sharon Ash, wants to discontinue life support and allow her to die. Another daughter, Elaine Lee, wants the hospital to make every effort to save her mother. The hospital, while siding with Ash’s philosophy, is caught in the middle, and every issue — be it the insertion of an intravenous line or the administration of an antibiotic — “is a negotiation, with lawyers all around.” Hansen-Flaschen had hoped that Lieberman would be moved out of HUP and into a skilled nursing home in July, but the two daughters still disagree over what terms to set for her treatment.
“Meanwhile, that woman is dying piece by piece,” he says. “Her body weight is about half of what it was a year ago. Each of these crises is very damaging to the body, and the treatment we give adds insult to injury, and so with each crisis, another few pounds of her body just die off.”
It is also an issue of resources. “I’d like to see her in a facility more appropriate to her care,” Hansen-Flaschen says, “so we can use her bed for people who can’t get in the door who are experiencing acute, life-threatening problems” — and have a chance of benefiting from HUP’s treatment.
Dr. Isajiw, the Lansdowne physician, asked by Lee to be her medical consultant on the case, believes that withdrawing Lieberman’s life support is not justified. If her treatment was “futile,” he argues, then she couldn’t have survived for several months on a respirator. “Mrs. Lee is absolutely convinced that her mother is not terminal,” he says. “Nobody can show what she’s dying from — They want to get the right to say that ‘We’ve determined it’s futile.’ They’re saying her continued life is futile. That’s a very dangerous thing to say.”
“The purpose of intensive life support,” Hansen-Flaschen maintains, “is to sustain or restore a meaningful survival, where meaningful refers to survival that can be appreciated and valued by the patient. It is beyond any expectation that after five months of this [treatment], she would rally and suddenly show the ability to heal, that she would regain her abilities and independence and mental function and return to the state of being she might recognize as worthwhile.”
Elaine Lee, quoted in a July 5 Philadelphia Inquirer article about the case, recoils at such discussions. “The doctors talk about quality of life. I object to that phrase. Who the hell are they? That is a person’s life. The quality doesn’t determine if that person should stay alive. Is a better answer to put someone to death?”
Art Caplan says such disputes illustrate why futile-care policies make sense: “We need a mechanism, not just to empower families, but to realize that families can battle, and then what? I think we should constrain choice so it does not set up impossible conflicts.”
Nevertheless, he predicts, these policies will be difficult to enforce. “I don’t know that it’s dangerous in terms of being misused,” he says, “but it’s going to be harder to sell them as cost-containment looms bigger and bigger” as a perceived threat.
HUP’s futile-care policy has never been enforced over the objections of families. “It kind of falls outside our culture to do that,” Hansen-Flaschen explains, and, he admits, hospitals are afraid of newspaper headlines and lawsuits. He hopes the policy will be revised to explicitly define the purpose of life support and, through a process involving families, allow physicians to determine at what point a patient should not be resuscitated or receive an increased level of life supporting treatment. He would also like to see Penn’s Health System open its own chronic ventilator unit and a skilled nursing facility to move patients to the levels of care more appropriate to their conditions and free up some hospital beds that are being “used as nursing homes.”
Allowing hospitals to define the parameters of living and dying through futile-care policies “is definitely giving too much power to [medical providers in] decision making,” warns Isajiw. “We’re not always right. We’re not always motivated by the best interests. Sometimes we think we are, but we don’t know what we’re doing.”
Isajiw blames the advent of these policies on the push for health-care cost-containment and changing societal attitudes. No one’s being kept alive any longer than they were 10 and 20 years ago, he says. “It’s a myth to say that we now have newer technology that somehow makes this necessary. We had respirators then.” What has changed is that society has “become more enamored with death as a solution to people’s problems. Sometimes death is going to occur anyway, so it’s senseless to do anything else to stop it. That’s fine, but to make a decision that death is the answer, that this is somehow providing treatment for the patient, that is very close to what euthanasia means.”
Although there appears to be broad support for patients’ and families’ rights to withhold medical treatment, little consensus exists over physician- assisted suicide, which is currently legal only in the state of Oregon. Caplan says adding assisted suicide to the statutes would be dangerous because of dramatic inequities in patients’ health coverage and income.
But Carol Poenisch, daughter of Dr. Jack Kevorkian’s 19th assisted-suicide patient, Merian Frederick, is campaigning to legalize the procedure in her home state of Michigan.
Merian Frederick, an active grandmother who had always led a busy, independent life, was dying of Lou Gehrig’s Disease, a gradually debilitating muscular condition. As what began with a droop in one corner of Frederick’s smile gradually consumed the remaining muscles of her body — until she couldn’t lift her head off her chest or even swallow an oyster without choking — Poenisch was ready to accept the challenge of caring for her. That was not the ending, however, that her mother had in mind.
At first she ignored the hints about suicide, but Poenisch says she finally realized that the only way she could truly show her love was to respect her mother’s autonomy. “I felt like we were in a room together. Maybe I was reading with the light on and she was trying to sleep. She was very politely asking me, ‘Could we turn the light off?'”
The week before Frederick went to Dr. Kevorkian’s apartment to die, her children gathered at her Michigan home, asking the nurses not to come. It was far from a somber occasion. “She was very happy, contented, and relaxed,” Poenisch recalled. “For her, it was like she was waiting for a train. For us, we felt like we were giving her this gift of death.”
Although Kevorkian is the most publicized, he is not the only medical provider to assist in the suicides of critically-ill patients — a practice, albeit an infrequent one, that has quietly gone on for years, according to some studies. Dr. David Asch, associate professor of general internal medicine at Penn’s School of Medicine, published a paper in the New England Journal of Medicine in 1996, revealing that 19 percent of critical-care nurses responding to a survey reported “engaging in some act to hasten a patient’s death.” Although some nurses attacked the findings, saying they provided a dangerously distorted picture of their profession, Asch defended his research (“Gazetteer,” May/June 1996).
Instead of legalizing physician- assisted suicide, many medical providers argue, resources should be spent on improving care for the dying, counseling, and easing the discomfort of the terminally ill. Says Strumpf, the Penn nursing professor, “I think [assisted suicide] happens because we’re not managing and taking care of the rest of the picture better.”
As director of the gerontological nurse practitioner program and the Center for Gerontologic Nursing Science at Penn’s School of Nursing, Strumpf is pursuing a grant to help improve end-of-life care in nursing homes. “It’s a group of people who are really hidden,” she says. “The critical-care units get lots of publicity, but just being old and frail and finally dying in a nursing home doesn’t get much attention.” Strumpf is proposing to educate staff on better pain control (one of the most neglected problems, according to a study published in the Journal of the American Medical Association in June), communication with families, and the reduction of unnecessary treatments.
An alternative to traditional hospital or nursing home care is hospice care, which provides palliative, rather than curative, treatment to the dying in a home or home-like setting. The number of hospice patients has doubled since 1993 to nearly half a million today. “Hospice probably ought to expand,” Strumpf says. “What is most problematic about hospice is how it’s reimbursed [by insurance companies]. It’s a very tightly-framed reimbursement: only for people who have been deemed terminally ill, who are no longer receiving treatment, and who have six months or less to live. But what I would like to see is us have a much broader understanding of end-of-life care and the supports that people need.”
Looking ahead to the year 2030, when one out of every five Americans will be over age 65 — and the health-care system is likely to be even more overburdened — the issues surrounding end- of-life care are sure to increase in complexity. But Richmond, the nursing professor, hopes that these developments will also be accompanied by a change in attitudes: “I think technology sometimes advances faster than our wisdom in how to apply it,” she says. “I have high hopes that eventually we’re going to reach this equilibrium, that yes, we have this [medical] technology, but we also have a lot more wisdom under our belt. There will be a larger group of people dying in a given time. But … we may come to terms with death and what it means with a larger group of us who are elderly.”
For many families at the bioethics conference, tragedy has been the catalyst for political and social action. The Messingers waged a campaign to oust the overzealous county prosecutor who charged them with their baby’s death. Theresa Blake started a resource and counseling center for terminally-ill patients and their families. Another family formed their own hospice. And all of them hope, by simply repeating their stories, to generate a critical mass of support for the rights of families in medical decision-making.
But ethicists like Caplan argue that empowering patients and families is “not going to do it alone. We’ve got to make sure we’ve got people in the right [care] settings. We act as if we can teach doctors to turn switches on and off that will let them be aggressive, then turn them into caring, compassionate palliative care people. I don’t know that they can be both.
“I think it’s time for some new creative thinking about what we want to do [about dying],” says Caplan. “We’ve got to start thinking about ending legal worries [for doctors], extending the hospice model more broadly, coming up with ways to finance long-term care better. We’ve got to educate the clergy and nurses about how they can help manage the dying better, and we’ve got to not necessarily send people to ICU, but send people home, or send them to a nursing home. It’s going to take a lot of overhauling of our medical system to do.”
“I think what society and what individuals deeply want when they’re dying,” adds Richmond, “is to know that even when we cannot cure, that we still provide care and that we still alleviate pain and we still treat individuals with tremendous dignity and caring for what they’re going through.”
From 20 years of work in critical-care nursing, one memory that remains with Richmond is of a woman who underwent leg amputation. When infection set in and her organs began to fail, it was clear she would not survive. The woman’s family decided to discontinue aggressive treatment.
Although she was a patient in a high-tech intensive-care unit, Richmond says, “we let the family have free run of the place. Her teenage son had also been hospitalized for an accident. So I would go down and talk to him about his mother, and at one point, I rolled his bed up and took him into the unit so he could be with her. Was it sad? Absolutely. She had little children.” But in terms of care at the end of life, Richmond says, “I think that’s where we want to be.”
Back at the conference, many of the speakers move beyond the legal and medical issues to talk about death in transformative, even transcendent terms. Clergy representing Jewish, Catholic, and Protestant faiths speak about the presence of God at the bedside of the dying. Family members remember cherished moments spent with loved ones who were able to die at home.
Miles, the Minnesota bioethicist who never misses an opportunity for a conversation with a patient, recalls how he talked one woman through her mother’s gradual death as she was taken off life support. Each day when he saw her, he would ask what she was thinking at that moment or explain something she might not understand — such as how the rhythm of breathing changes in a dying person. During one of their final conversations, she rewarded him with an observation that surpassed any scholarly utterance on the subject: “I am struck by the majesty of death.”
