Are our lives our own? The ethics of elective death
In her heart, Barbara Ferguson knows she and her family made the right decision.
The legal landscape
Author Richard Cote says the Dutch and the Swiss have “by far the most advanced and humane laws on euthanasia and physician aid-in-dying in the world.” More, he adds that there is a growing consensus in Western populations that approves of the practice.
“These laws have been in place in Switzerland since 1942 and in the Netherlands since 2002, evolving into their present form during the last two decades. In both countries, the approval rating of death with dignity across a broad spectrum of incidences has exceeded 75 percent and continues to grow.
“Indeed, throughout the Western world, approval of the right to die, as measured by unbiased professional polling, has topped 70 percent. In the United States, the approval rating is approximately 75 percent.”
To date, Oregon, Washington and Montana are the only states that have passed death-with-dignity laws, albeit with very narrow restrictions.
“The Washington and Oregon laws are quite anemic and restrictive in comparison to Europe’s,” Cote says. “They do not serve 95 percent of the adult rational people who would be eligible for a peaceful elective death in Holland or Switzerland.”
Her husband of 21 years, John William Ferguson Jr., was on life support at Medical University Hospital. Unconscious and dying of lung disease, the 49-year-old St. George resident was not a candidate for a transplant. His kidneys also were failing. The attending physician, Dr. Andrew Goodwin, explained the situation with great care to Ferguson’s family.
Defining ‘elective death’
Suicide: The deliberate ending of one’s own life. In the Western world, unaided suicide is neither illegal nor regulated. Unassisted suicide is completely legal in South Carolina, the rest of the United States, all of North and South America, Europe, Australia and New Zealand.
Assisted suicide: Assisting another to end his life. This term applies to both medical and nonmedical people. In a majority of countries, assisting a suicide is unlawful even though unassisted suicide is legal.
Physician-assisted suicide: If the assistant is a licensed physician, the preferred term used in contemporary medical and professional journals is “physician-aid-in-dying.” In recent law, the latter term has replaced the former.
Euthanasia: The act of ending the life of another rational adult in accordance to his freely and clearly expressed decision.
Active euthanasia: Used to describe the action of deliberately ending the life of a suffering person at his explicit request. Example: A deliberate morphine overdose to induce a coma, during which breathing ceases and the brain ceases to function due to the lack of oxygen.
Passive euthanasia: Generally refers to the decision to withdraw treatment (drugs, therapies or artificial methods of life support that typically assist the breathing or feeding tubes) to allow death to occur naturally. Almost always accompanied by close medical supervision and palliative medication to control any resulting pain.
Pulling the plug: A nonmedical term generally implying that someone other than the patient makes a decision to end the life of another with or without the affected person’s consent.
“I asked him to lay it on the table for us,” Barbara Ferguson recalls. “Johnny already had had heart and back operations. He was on a ventilator at all times, and they had tried all kinds of medications. It became a quality-of-life issue for us, and we had to make a decision. It was very emotional. But the family agreed that life support would be discontinued.”
Ferguson, a Baptist, had made no provisions for a living will, says his wife, who was raised a Catholic. It was left for Barbara Ferguson, her family and in-laws to choose in his stead. Ferguson died May 6.
Given the choice, few would want to end their lives in nursing homes, hospices or in hospitals, however caring the professionals, but rather in their own home in the embrace of family and friends.
Yet many who are terminally ill and/or suffering excruciating pain that palliative care cannot balm spend their last days in clinical settings hooked to life support equipment they do not want. Others are compelled to go on living in ruined bodies or in advanced old age when they have no wish to do so, often beset with emotional or psychological pain that has become unbearable.
When all medical and counseling measures have been taken, and proven unsuccessful, should an individual have the right to end his or her own life? It is a debate with profound ethical, religious and human rights implications.
“Life should not be a sentence. The freedom to die in the manner of our own choosing is the ultimate civil liberty,” argues Mount Pleasant social historian Richard N. Cote, author of “In Search of Gentle Death.” “There is rising criticism that keeping dying people alive against their will is a violation of their civil rights.”
Tranquil passings in idyllic settings are no longer common in an era of high-technology medicine, Cote says.
“Many would strongly prefer to choose a certain and painless way to depart their life on their own terms and schedule, with dignity, while they still are rational and have sufficient physical and mental capacity to do so. But most state and national laws make that impossible.”
Who has dominion?
Ultimately, the issue of elective death pivots on a single question: Who has dominion over my life? On one side is the Western tradition of the autonomy of the individual and the death with dignity movement. On the other is the no less ardent sanctity of life belief espoused by conservative religious denominations, which generally oppose all forms of elective death.
“I’m pretty much in agreement with the idea that the patient has that domain,” says Dr. Bert Keller, former pastor of Circular Congregational Church. “He or she should be making decisions concerning their own life. There is nothing profound about that.”
Keller, who retired as an associate professor of bioethics at the Medical University of South Carolina in 2005, agrees that there are existential matters involved.
“There is pain that we call physical and pain that is mental or emotional, but the line between them is often blurred,” Keller says. “Pain is subjective. When a person really is experiencing such pain that appears to be of a more existential kind, I’d want to determine first if that patient is not suffering from a situational depression or not under the influence of some psychoactive substance that could be altering their reasoning process.
“But if such a person has gone through counseling and been checked out to see what’s going on, my answer would be, yes, it is their decision.”
Is there such a thing as unendurable pain or suffering? MUSC surgeon and bioethicist Dr. Robert Sade has little doubt about it. “I do believe there is, although I think it is unusual and probably rare,” he says. “The way physicians now use narcotics is a vast improvement from 15-20 years ago, mainly because of the element of advanced techniques in how to use narcotics by hospice physicians.
“I think that 5- to 10-percent estimate of end-of-life pain that can’t be controlled is an overstatement. Nevertheless, it does happen. And when life becomes unbearable ... it should be permissible for people to end their lives.”
Unfortunately, says Cote, many dying people in the U.S. and abroad have little access or insufficient funds to obtain palliative care.
The Rev. Jeffrey Kirby, moral theologian of the Catholic Diocese of Charleston, suggests that dignity can be defined in another way.
“I would argue that dignity is endowed by our creator, and we must follow the natural cycle that our creator has established,” he says. “One must let the natural process of life take its course. But to actively assert ourselves in that process is not to respect the designs of nature.”
Even the dying process itself needs to be viewed in the light of faith, Kirby says.
“St. Paul would tell us that whether we live or die, we are the Lord’s. Often, without that perspective, a person can come to any number of conclusions, particularly when suffering is involved.
“When we understand our lives are not our own, we understand that there is a dignity that has to be respected even in the dying process. The active taking of one’s life is never permissible morally, but to allow the body to follow through in the natural process of dying is permissible, and sometimes even expected.”
Kirby adds that some would be surprised at the church’s flexibility in these matters.
“People can refuse to undergo treatments they do not want or extraordinary measures that are keeping them alive. The body then is allowed to follow the natural process of dying. But nothing actively is being done to hasten this.”
Cote says there is no clear consensus among the world’s religions on elective death.
“None of the seven mentions of suicide in the Christian Bible condemn the act, but most conservative Christian denominations do so. Buddhists do not condemn it. Islam forbids it outright, as do conservative Jews.
“Acceptance of the concept of elective death varies from one pole to another across the world and even within specific religious groups. And when death is imminent and pain is inescapable, many devout religious believers put aside religious dogma and opt for the most practical ways they can to deal with their imminent fate.”
Opponents of legalizing or decriminalizing elective death fear it will open a Pandora’s box of abuses.
“Those arguments are called ‘slippery slope’ arguments,” says Keller. “There is a general idea floating about that if one authorizes people to make those sorts of decisions that the next step may be further down the slippery slope.
“I don’t see that as a worrisome thing. I don’t think slippery slope arguments are compelling arguments. I don’t have that fear.”
Approaching the subject from a medical as well as an ethical stand point, Sade agrees in principle with the right-to-die argument, with reservations. But he draws the line at physician-assisted suicide as practiced in Europe.
“I think that physician- assisted suicide is improper and should not be done. It is not the role of physicians to help people die. It is to control illness and relieve suffering. But for all its power to heal and relieve pain, medicine cannot and should not try to relieve every kind of suffering.
“Laws to govern physician-assisted suicide can’t succeed to the extent that people hoped they would because there are always going to be transgressions of the guidelines that escape detection for a while.”
Cote counters that a majority of physicians in the West already approve of physician aid-in-dying.
According to Cote, a rapidly expanding international group of loosely affiliated organizations, generally referred to as the death-with-dignity movement, are working to change perceptions and laws that limit or ban elective death.
“In Search of Gentle Death” explores the evolution and accelerating growth of this movement in the U.S. and abroad between 1975 and the present. It explores the lives, ideals and goals of the founders, leaders and “millions of members of the death-with-dignity movement worldwide, and their fight for the right of anyone, anyplace, to die with dignity.”
Apart from presenting scholarly papers on the subject, Cote consulted with authorities on four continents, including delegates at the biennial congresses of the World Federation of Right to Die Societies in Paris, Melbourne and Zurich.
Yet he insists neither he nor his book advocates suicide. Rather, he is providing a resource for people wrestling with the issues the book raises.
“I am not pro-suicide by any stretch of the imagination,” says the author. “Ending one’s own life is too precious a thing to undertake for anything but the most drastic of reasons. However, I do believe that when life has become so completely and unendingly insufferable, no one has the right to force someone to endure the unendurable.
“My book is about preparation. It is devoted to telling people about the way they can ensure that at such time that they or a loved one that is close to them dies, that this death comes about in the most kind, gentle, painless and stressless way possible.”
A quiet goodbye
Barbara Ferguson is grateful for the caring demonstrated by Goodwin and the MUSC staff. She believes her husband departed peacefully and as gently as possible.
“We were all around him, though he did not seem to know we were there. But we hoped that he heard us. Everyone took the chance to hug him and tell him something special. Everyone in the room said goodbye.
“You do question it. But it is the right decision to make when you know how they lived their life and how it would be their choice to go if they had it to make. It’s hard, but if I can help one person with our story, it will have meaning.”