Seeking comfort and choice at the end of life

The face of death has changed markedly during the last century. In America, most people now die from chronic illnesses, not contagious diseases as in the past. We spend our final weeks in institutions such as hospitals or assisted-living facilities rather than at home. We are living longer and dying more slowly. And the actual moment of death is often a matter of choice—the result of halting aggressive treatments.

Surgeries, medicines, and technologies may extend life, but they may also extend suffering. With intensive end-of-life care comes a lack of control and a peculiar state of medical purgatory. Records show that nearly a third of Medicare’s annual $300 billion-plus budget goes to care for patients in their final year of life—and about half of that amount is spent in the last few months. This should be money well spent, but is it?

Advance directives such as living wills are helpful in such cases, but they remain imperfect tools, open to interpretation and trumped by family discord. Besides, only a fraction of us have such documents or have talked with our families about end-of-life decisions.

“Death has replaced sex as the taboo subject of our time,” says philanthropist George Soros, who founded the Project on Death in America. “In the land of the perpetually young, growing older is an embarrassment and dying is a failure.”

In late April, hundreds of participants gathered at the Emory Conference Center for a series of candid, wide-ranging discussions about the taboo subject of our time. The speakers and attendees at “Changing the Way We Die: Religion, Medicine, and Improving the Dying Process” included doctors, rabbis, ministers, social workers, people with illnesses, caretakers, hospice chaplains, professors, and many from outside the University or health care system. More than a few had watched loved ones die after medical procedures led to painful rather than peaceful ends, or linger for years with severe dementia, and were searching for a better way.

Participants asked pointed questions, debated each other, and shared personal experiences. They talked about elderly ballerinas now in wheelchairs, the act of turning off a machine that is keeping someone you love alive, the challenge of caring simultaneously for growing children and a dying parent. They discussed pain medications and the point at which helping to ease someone’s suffering also hastens their death.

People kept talking over lunch, in the hall, walking to their cars, and into the night, spinning a dialogue that was both commonplace and profound, about something that happens every day and that will happen to everyone one day.

Dying well, not death itself, was the focus. What follows are some of the more significant—and challenging—questions that emerged.

How should we talk about dying?

Universities have long explored death as literary theme, philosophical abstract, and anatomical reality. The rituals of death have been compared across religions and cultures. Our mortality has been examined through the eye of the scientist and the voice of the poet.

Many at Emory have spent their careers searching for ways to prevent or delay death: fine-tuning vaccines in a lab, providing direct treatments to ill patients, lobbying for preventive health care, finding the blend of drugs that will ease discomfort.

Only rarely do all of these people—doctors and chaplains, researchers and caregivers—come together and ask: What can be changed? How can we improve end-of-life care? What kind of death can we expect?

“Once you’ve received a terminal diagnosis, you look at things differently,” said participant John Shippee, who found out late last year that he has a brain tumor that is usually fatal. “I haven’t felt a fear of death very much, but I have been very fearful of the unknown that is part of this journey.”

Shippee is using his time as a survivor to open a dialogue about the dying process. He speaks at conferences, at churches, with medical students, and with friends and family.
This is what we all must do, says palliative care physician Stephanie Grossman—talk about our experiences, and express our wishes with everyone who might be there at the end. “Don’t get to that point and have your spouse or your child or your partner say, ‘I don’t know what he wants. We never talked about it.’ ”

Who determines when we die?

Terri Schiavo, whose parents battled her ex-husband over whether she would want to be kept alive by feeding tube until her 2005 death, was not the first to be at the center of a widely publicized right-to-die debate. The courtroom wrangling over Karen Ann Quinlan and Nancy Cruzan set legal precedent for determining who decides when artificial life-prolonging measures should be stopped for someone who can’t communicate their desires. Quinlan’s case spurred the first modern public debate over the right to die. The twenty-one-year-old collapsed at a party after swallowing alcohol and the tranquilizer Valium in 1975. She suffered brain damage and fell into a persistent vegetative state. Her family started a legal battle to remove her from life support. They succeeded, but Quinlan kept breathing after the respirator was removed, remaining in a coma for nearly a decade until her 1985 death.

The Supreme Court also addressed the issue of the right to die in the 1990 case of Nancy Cruzan, who was in a persistent vegetative state. Her family wished to disconnect her feeding tube. The Supreme Court concluded that the right to die was a liberty protected by the Due Process Clause if there was “clear and specific evidence that the patient would wish to have intravenous feeding discontinued.”

This led to considerable interest in advance directives, especially living wills, which detail an individual’s wishes concerning medical treatments or nutritional support in specified circumstances. After additional evidence of Cruzan’s wishes was discovered, her nutrition was discontinued, leading to her death. Her gravestone reads: “Nancy Beth Cruzan/Born July 20, 1957/Departed Jan. 11, 1983/At Peace Dec. 26, 1990.”

“Only 15 to 20 percent of people nationally have signed advance directives,” says Professor Emerita Elizabeth Connell, a retired OB-GYN who taught at Emory for more than two decades and now volunteers her time educating people about their final rights. “The three key factors are ignorance, conflict, and fear. Ignorance of what to do to protect yourself, conflict by doctors who fear lawsuits or family members who don’t agree, and fear in that some people can’t or won’t accept the fact that they’re going to die.”

A sprightly eighty-one-year-old who still swims an hour each morning in a backyard pool framed by large banana trees and amarillas, Connell traveled the world with her husband, Howard Tatum, also an OB-GYN at Emory, who died four years ago with Alzheimer’s disease. “I’ve had an advance directive for years,” she says. “Our mission at [the organization] Compassion and Choices is to help people face their end-of-life decisions with dignity and peace.”

Can we decide how to die?

In developed countries, says Margaret Battin, professor of philosophy and adjunct professor of internal medicine at the University of Utah, 30 percent of people die sudden, unanticipated deaths and 70 percent from diseases with long downhill courses. “So most of us are able to foresee our own deaths coming,” she said.
The issue of physician-assisted suicide is an international point of debate in “every country of privilege where life expectancies are long,” said Battin, speaking at the Emory conference. It is currently legal only in the Netherlands and the state of Oregon, where there have been 246 assisted deaths in eight years.

In Battin’s view, helping someone die can be an act of the highest moral character. “All this talk of a good death or perfect death rhetoric seems to be hyperbole to me,” she said with a wry smile. “This permits the individual to pick the means of death they regard as least bad.”

Taking the opposite position, Associate Professor of Christian Ethics Timothy Jackson of Candler School of Theology said people who are dying have three main fears: fear of pointless and protracted pain; fear of bankrupting their families financially and emotionally; and fear of loss of personal dignity and control. If these fears could be assuaged, he said, there would be no call for physician-assisted suicide “based on mercy.”

“People should be entitled to try to control their own lives,” countered Battin. “And this includes the very ends of their lives. They are entitled to autonomy, and they are entitled to try to avoid pain and suffering.”

Even those who have lost their autonomy, replied Jackson, are deserving of sanctity, of giving or receiving love and care. And doctors are not merely hired guns, he said: “They are practitioners of a healing craft.”

A right to die, he said, does not extend to “a right to be killed by another,” adding that most pain is manageable by good palliative care. Hospices, for example, carry out a commitment to reducing pain and accompanying the dying person to the end. “There are rare cases where pain is intractable,” Jackson said, “but rare cases make bad law. These people would be better served by allowing passive euthanasia—stepping aside and letting the invincible, underlying process of dying carry the day.”

Doctors who administer increasing doses of morphine to dying patients with the intent of easing pain, Battin and Jackson agreed, are not engaged in physician-assisted suicide: “They are not aiming at the death of the patient.”

The audience posed a barrage of questions: Would this discussion even be necessary in a secular country? What is a “natural” death in the modern world—just a romantic concept? What role does faith play in the decision?

How do religious beliefs affect dying?

Contrary to conventional wisdom, beliefs about religion or spirituality don’t dominate people’s final discussions, says Elwood Spackman Jr. 67T, director of pastoral services at Emory University Hospital. “You don’t hear as much about the afterlife as you might think. It’s more about the remaining part of life. Grief about not getting to accomplish what they wanted to do—take trips, see grandchildren.”

For many years, Spackman was the oncology chaplain at Emory Hospital and The Emory Clinic. “I was with people from diagnosis through death,” he says. “There is extraordinary strength in people.”

With medical advances come harder ethical choices, says Spackman. His own father died at home of a heart attack when he was fifty-four. Several decades later, Spackman had a heart attack at his home, also when he was fifty-four. “I called 911, EMS came and gave me nitro, I had a heart cath and angioplasty, and I’m fine. So technology is a wonderful thing for getting someone through an illness,” he says. “But for those whose brains are injured and who can’t even be weaned off a ventilator . . . well, that’s a different matter. What we’re having to determine is when whatever is scientifically possible becomes abusive.”

A man who listens as intently as most people talk, Spackman has shaped a career out of knowing what patients and their families need. “I learned from my own mother when she was dying. I asked her if she was afraid, and she said she wasn’t afraid of death, but of the process. Was she going to be in pain? Were her loved ones going to be okay?”

During times of heightened emotion, even those reluctant to speak about their faith can find comfort through spiritual or religious imagery, he says.

He remembers well a young, blonde woman from a small town in southern Georgia who was a graduate student at the University of Georgia when she developed leukemia. She was in and out of the hospital for treatment. Spackman asked her one day what biblical image came to mind when she thought about her illness. She replied that she hadn’t been to church in years, but she did have a vision of standing at the edge of a river. Everything she wanted was on the other side, but she couldn’t get across. She thought it was like a bible story, but couldn’t remember which one. Was it like Moses at the edge of the Red Sea? Spackman asked. Yes, she replied, that was it.

The image became a kind of code between them, a method of communicating where she was emotionally during her treatment. “When she was in remission, she said she felt as if she was in the middle of the river, and was afraid the water would crash down over her.”

After two bone marrow transplants, the young woman eventually died. Spackman carried through the image she had chosen into her eulogy, saying that although Moses had never made it to the Promised Land, he sent others in. “He influenced a lot of other people, just as she did.”

Is dying well a matter of the proper paperwork?

Kathy Kinlaw, acting director of Emory’s Center for Ethics, says there is a powerful reluctance to talk about dying and death. In Georgia, 80 percent of residents die in a hospital or nursing home, and half of them do not have the ability to make informed decisions near the end of their lives. Nationally, 25 percent of people die at home, even though most say that’s where they would prefer to die.

Advance care planning can make all the difference, Kinlaw says—a thoughtful, informed consideration of one’s health care values discussed with one’s family and doctors. She likes to quote novelist Iris Murdoch, who said, “At the moment of choice, most of the business of choosing is already over.”

And don’t rely on doctors to lead you through the process, Kinlaw cautions. “Fewer than 18 percent of medical students receive end-of-life education.”

Kinlaw and the Center for Ethics staff were active in drafting and supporting The Georgia Advance Directive for Health Care Act, which went into effect on July 1, 2007, and combines the provisions of a living will and a durable power of attorney for health care.

Advance directives such as living wills and durable power of attorney for health care are the main documents concerning end-of-life planning. A living will usually covers specific directives as to the course of treatment to be taken if the patient becomes incapacitated and unable to communicate. A power of attorney for health care appoints an individual to direct health care decisions should the patient be unable to do so. Terminally ill individuals might also consider a do-not-resuscitate order, which states that resuscitation should not be attempted if they suffer a cardiac or respiratory arrest.

None of these documents can take the place of talking with your family about the type and intensity of end-of-life treatments you desire, says Emory’s palliative care team codirector Grossman. “Families at the moment of crisis are not the best decision makers,” she says. “There are often lots of different specialists involved by then, and the family is getting a lot of complex feedback, some of it conflicting. You will receive better quality of care if you’ve had a conversation about what your wishes would be.”

Can we create a better death?

William Branch, Carter Smith Sr. Professor of Medicine, says there has been a boon in palliative care programs in the past several years, with teams forming at nearly every hospital. Partly, this represents a generational change, he says. Baby Boomers are coming of age, watching aging parents’ experiences, and deciding how they want to die when the time comes. But it’s also due to new medical technologies that could seemingly extend life far beyond what might previously have been possible—not always to the patient’s benefit. “On this topic, we’re seeing the public pushing the medical profession, instead of the other way around,” he says.

Mridula Puri 79MR, a child psychiatrist from Atlanta, says she and her husband came from a culture in India where “we didn’t talk about death.” But since her husband has been ill with non-Hodgkin’s lymphoma, they have talked a lot about what it would mean to be hooked up to machines. “How do you define life?” she asks. “Is it just breathing? Or is it purposeful living?”

To prolong a life is a kindness, says Rabbi Analia Bortz of Congregation Or Hadash in Atlanta, but to prolong the process of dying is not. “It used to be simple to determine if someone was alive. You would hold a feather or a mirror in front of their mouth and nose, and if the feather moved or the mirror steamed, they were alive,” she says. “It is not so simple anymore. Now, we have different categories of deciding.” A good death, she says, is to “die in peace at the right moment.”

But first, death must be accepted as a reality, which can make time more vivid and valuable, says Bhagirath Majmudar, professor of pathology and laboratory medicine at Emory. A beetle lives days; a butterfly, weeks; a human, decades. “Death . . . is not one moment, but a continuum,” he says. “There is all this talk about lengthening life, but can we deepen life?”

The value of life—and the reality of death—become all too apparent when facing the death of a loved one, say Kim Newsome 96MPH and Dawn Francis-Chewning 79C, who met at the conference and shared their personal experiences.
Newsome, who lost both her parents in the past two years, said the medical model “failed our family in dealing with the dying process. If we try to let people die, we’re pushing up against a societal force. Everything is geared toward prolonging life, the ‘we can fix you’ mentality.

“Yes, my father lived six more months after massive open heart surgery following two strokes and a heart attack, but they were six terrible months. How can we handle this differently as a community? I am searching for those answers. And I’m not the only one.”

“I have had a lot of loss in recent years,” added Francis-Chewning. “Both of my parents, my best friend, my husband. I have three children, and we were reeling from these deaths. I was very struck by the feeling of responsibility I had for them: I’m it. There’s nobody else.”

For herself and her children, Francis-Chewning wanted to take the mystery out of death, to acknowledge that it is an everyday reality. “I didn’t want to talk about it in hushed tones, or keep it in the closet, but to treat it matter-of-factly. I’ve made out a living will, I’ve made my choices,” she said. “It’s part of what I wanted to give my children—an understanding that you can control your destiny in life and in death.”




© 2007 Emory University