Playing God Part 3: Do no harm? End-of-life ethics in a ‘death with dignity’ culture

After concelebrating his cousins’ confirmation Mass, Father Mark S. Bialek walked out the front door of St. Ursula in Parkville late in the evening May 18 to commotion near the intersection.

He went over to help, and saw his parents, who had just left the Mass, injured in the road, hit by a pickup as they were crossing a street. His mother, Sharon, 67, was unconscious.

Physicians at Baltimore’s Shock Trauma Center told 34-year-old Father Bialek and his father, Robert, that Sharon had suffered severe brain damage and likely would not regain consciousness or live without a respirator. They also discovered the return of the ovarian cancer she had beaten a year ago.

The father and son decided to remove Sharon’s respirator, and she died early on the morning of May 20.

Eight days earlier, Father Bialek, an only child, had given her Mother’s Day flowers and a hug and kiss at the end of Mass at Resurrection of Our Lord in Laurel, where he is pastor. Her final gift to him, he said, was the preparations she had made for death, including advanced directives that outlined her wishes not to be left on life support.

Both his parents had drawn up living wills with a lawyer. Father Bialek and his father never presented his mother’s directives to the hospital, but used them as guidance as they made decisions about medical interventions.

The certainty he and his father had about Sharon’s wishes was a comfort, Father Bialek said.

“It gave me a peace that I was doing what she would wish, that it was completely in line with our faith, and all this was approached through our faith in the Lord and the hope of Resurrection,” he said. “I loved her so much that both Dad and I were very certain, and very affirmative, that although we didn’t want to see her go, we didn’t want her to suffer. If she didn’t want extraordinary means (to prolong her life), … that was OK.”

With advances in medical technology, end-of-life care has increased in complexity, often leaving loved ones to decide whether a dying person’s life should be extended, and by what means. Many agonize over the possibility of doing too much – increasing the likelihood of prolonged suffering – or not doing enough, causing a person to die prematurely.

Meanwhile, laws in some states permitting physician-assisted suicide question the very nature of death, asserting that a person has a “right to die” – especially when suffering from a terminal disease – at a time and manner of his or her choosing.

In 2007, Maryland’s Catholic bishops recognized Catholics’ need for guidance in health care ethics, publishing “Comfort and Consolation: Care of the Sick and Dying.” The letter outlines Catholics’ medical treatment obligations for the sick and dying, making clear the proper course of action is unique to the circumstance of each individual.

The Maryland Catholic Conference’s document dovetails with the U.S. Conference of Catholic Bishops’ “Ethical and Religious Directives for Catholic Health Care Services,” which Catholic hospitals and other health care facilities follow.

At their core, Catholic health care ethics promise the patient five things, said Father Michael A. DeAscanis, chaplain of the Catholic Medical Association’s Baltimore Guild:

We are here to help you.

We won’t mutilate you.

We won’t kill your child.

We won’t kill you.

 We won’t help you kill yourself.

The second and third promises refer to abortion and sterilization, which are legal and widely provided in non-Catholic hospitals. The other promises – not to kill or help one kill oneself – are no longer universally held, as physician-assisted suicide laws have passed in several states.

In May, Vermont Gov. Peter Shumlin signed into law a bill allowing medical professionals to prescribe death-inducing medicine, which patients could then administer themselves.

Oregon was the first state to allow physician-assisted suicide in 1997; the method is also legal for terminally ill patients in Washington State and Montana. Organizations supporting physician-assisted suicide, often under the guise of “death with dignity” or “the right to die,” are waging campaigns in other states.

Physician-assisted suicide has been illegal in Maryland since 1999. The MCC is vigilant about any bills affecting end-of-life care, said Mary Ellen Russell, its executive director. It makes sure such legislation maintains a line “between the intentional act or omission that would deliberately cause the death of someone, as opposed to measures that would validly promote appropriate palliative care at the end of life.”

Physician-assisted suicide is a form of euthanasia, the “action or omission which of itself and by intention causes death, with the purpose of eliminating all suffering,” according to Blessed John Paul II’s 1995 encyclical “The Gospel of Life.” In assisted suicide, a patient is provided a means to end his life and he completes the act himself, whereas in euthanasia, another person administers a “lethal agent” to the patient.

The church forbids suicide, including euthanasia. It considers both murder, even if motivated by mercy or compassion.

Euthanasia is generally categorized as involuntary or voluntary. Involuntary euthanasia – ending a person’s life without his or her consent – is widely considered to be murder. Voluntary euthanasia – ending a person’s life with his or her consent – is legal in some countries, and can be “active” or “passive.”

In the United States, advocates of physician-assisted suicide tout accounts of people suffering from debilitating, terminal diseases, unable to participate fully in the life they once knew. Assisted suicide is painted as merciful or dignified, allowing people to die in their own way, saving them from undesired medical intervention.

To choose euthanasia is to try to be like God and control death, Father DeAscanis said. However, a person is not the owner of his or her life, but a steward of it, and has no right to take his or her life, or the life of another, no matter the quality of that person’s life, he added.

That’s not the view of Dr. Lawrence Egbert, a Baltimore physician whom Newsweek dubbed “the new doctor death” in 2010, likening him to Dr. Jack Kevorkian, the infamous euthanasia activist. As former medical director for New Jersey-based Final Exit Network, Egbert approved applications of people who wanted the organization to help them die. In 2011, he told The Baltimore Sun that he had helped to direct the deaths of more than 300 people.

The organization’s “exit guides” – people who facilitate the deaths, often in person – frequently use helium-filled hoods placed over the patient’s head, asphyxiating him or her.

“When we can’t help them fix the suffering, then we should help them get it over with,” Egbert told Newsweek.

Like Egbert, physician-assisted-suicide advocates often point to inescapable suffering as the central reason for assisted suicide’s legalization. However, relief from suffering wasn’t among the top three reasons Oregonians asked doctors for lethal prescriptions last year.

According to the state’s Death With Dignity Act annual report, the most frequently mentioned end-of-life concerns were loss of autonomy, decreasing ability to participate in activities that made life enjoyable, and loss of dignity.

“We can always control pain,” said Dr. F. Michael Gloth III, a Catholic and geriatrician who recently moved his medical practice from Baltimore to Naples, Fla.

End-of-life pain control is different from other pain control designed to help people go about their lives, he said.

An associate professor at The Johns Hopkins University School of Medicine and former director of Geriatrics Ambulatory Services at The Johns Hopkins Medical Institutes, Gloth has published in the area of end-of-life ethics.

What is hidden in the debate are the stories of people who survived an assisted suicide attempt and changed their mind, and those who did die, only to have an autopsy reveal they weren’t terminally ill, he said.

Catholics do not seek suffering, nor do they celebrate it, said Father DeAscanis, who holds a degree in moral theology with a focus in medical ethics. The Ethical and Religious Directives are clear that Catholic health care workers have an obligation to help relieve the suffering of the sick or dying through good palliative care.

However, suffering also has the potential to be redemptive, Father DeAscanis said.

Blessed John Paul II called suffering “salvific” in his 1984 apostolic letter “On the Christian Meaning of Human Suffering.” At the end of his life in 2005, several Catholic commentators remarked that by persevering in spite of Parkinson’s, the pope showed the world how to suffer and how to die.

Too often, people consider life strictly in utilitarian terms, Gloth said.

“There are some circumstances where function is actually not a measure of quality,” he said. “You’ll have someone with ALS who can’t lift their head off the bed, but – because of the spiritual nature of that individual – because of their ability to pray … their quality of life, they will tell you, is better than it has ever been before. These are people who are not afraid of death.”

Some have interpreted the church’s opposition to euthanasia as a position of preserving life at all costs. That is not the case, the MCC’s Russell said.

“The church recognizes the beauty of the natural process of death, and that it’s appropriate and moral to allow that process to occur within certain appropriate parameters,” Russell said. “Sometimes, people may think that church teaching requires the imposition of excessive burdens to prolong life unnecessarily, and I think thorough examination of where the church is coming from would help them understand that’s not the case.”

In general, a Catholic’s obligation to the dying is simple: Do what is necessary to sustain life within reason, and when it is no longer reasonable to sustain life, do nothing to cause death intentionally.

However, what that means is specific to each circumstance.

When it comes to end-of-life ethics, some people try to hide behind statements such as “this is all kind of gray.” It’s not, Father Tadeusz Pacholczyk, the director of education and an ethicist for the National Catholic Bioethics Center (NCBC) in Philadelphia, explained to an audience at St. Agnes in Catonsville in March 2012.

“There are real lines in these discussions,” said Father Pacholczyk, a bioethicist and neuroscientist. “It’s not always easy to see where the line is. That’s where we have to struggle sometimes, but with the help of God, understanding the teaching of the church and using our own powers of rationality, we can see and come to the point of seeing where those lines are.”

Catholic health care ethics categorize medical interventions as “proportionate” or “disproportionate” means, terms sometimes simplified to “ordinary” or “extraordinary.”

Proportionate means are morally required to preserve a patient’s life, while disproportionate means are not morally required, and may not be preferred, Father Pacholczyk said in a presentation titled “Ethical Decision Making in End-of-Life Situations.”

The terms apply to the use of a medical intervention in a particular circumstance, not to any specific procedures themselves, he said. Dialysis, for example, cannot be “proportionate” or “disproportionate” in itself; only the patent’s circumstance determines whether its use would offer proportionate or disproportionate means for preserving the patient’s life.

Because Catholics may need guidance on end-of-life decisions, experts recommend they speak with their pastor, or consult the NCBC, which makes ethicists available via phone for free consultation 24/7.

Ultimately, what Catholics are called to do is not that complex, Father Pacholczyk said.

“We are called to make a good, prudential judgment,” he said. “If we do that, if we make our best effort to make that best judgment, we can die in peace, and we can let our loved ones die in peace as well.”

Because each person’s situation is different and impossible to anticipate, the church is skeptical of living wills, which provide specific instructions in the case of hypothetical situations on the type of medical intervention a person would want.

“The church counsels us not to be too detailed in our planning, knowing that we cannot predict the future,” Father DeAscanis said.

Catholic experts are more comfortable with other forms of advanced medical directives – such as a broad, written statement asking to be cared for in accordance with Catholic health care ethics, like the one provided in the MCC’s “Comfort and Consolation” – but they say a patient’s best route is to identify a surrogate or proxy to make decisions if he or she is unable to.

Karen Fitzpatrick, 58, a chaplain at Bon Secours Hospital in West Baltimore, helps patients prepare advanced directives, and said choosing a surrogate “is, in a nutshell, the most important thing.”

A good surrogate, sometimes called a “health care agent,” is someone whom a person trusts, whom they can talk to, and who would have the stamina to make decisions in accordance with the patient’s wishes, she said. She’s seen family members struggle with decision-makingwhen they don’t know what the patient would want.

She also sometimes recommends that patients fill out a living-will document, but not make it a formal part of an advanced directive, instead providing it at as a guide to their decision-making surrogate.

“What it does is bring peace to the patient, knowing that they’re in the good hands of someone they trust,” she said.

The MCC has worked with the Maryland Department of Health and Mental Hygiene to help craft versions of Maryland’s Medical Orders for Life-Sustaining Treatment (MOLST), a document nursing homes, assisted living programs, hospices, home health agencies and dialysis centers are obligated to provide patients.

MCC considers MOLST useful in fewer situations than the document itself might suggest. No one is under an obligation to sign it, Russell said.

The problem with many ready-made living wills is that they present different options as if they had the same moral weight, which they do not, Father Pacholczyk said.

Catholic experts are also wary of “Do Not Resuscitate” directives, or DNRs. According to “Comfort and Consolation,” “the decision of whether or not resuscitation should be attempted should be based on the patient’s actual medical condition. Though a DNR may be justifiable at times, it often can be inappropriate for individuals to stipulate in advance that they are not to be resuscitated under any circumstances.”

People can be driven to make a living will or other detailed advanced directives because they fear being a burden to others. That fear is misplaced, Father Pacholczyk said.

“We all have the right to be burdens to one another. That’s what it means to love one another,” he said. “We need to give our elderly and infirm the freedom to be burdens. We need to let them know that – that we want them to be a ‘burden’ on us, because we realize how much we have received from them.”

Family members need to discuss end-of-life care wishes with one another, even if the conversation is difficult, Father Bialek said. Because his parents had shared their hopes and concerns, he and his father were able to be confident surrogates for his mother.

Father DeAscanis recommends Catholics use “Comfort and Consolation” as a guide for their conversations. The NCBC also offers end-of-life care resources.

From his desk, he faces a print of St. Francis of Assisi holding a human skull, contemplating death. It’s a common theme in the iconography of the 12th-century saint, and its message shouldn’t be foreign to present-day Catholics, Father DeAscanis said.

“In American culture today, people avoid thinking about their mortality, avoid facing the reality of death, but Catholics above all should be considering it everyday as we look upon the crucifix,” he said.

Death shouldn’t be a gloomy thought, but a realistic one, Father DeAscanis said, adding that Catholics should “live every day with an eye to eternity.”