ch. 12

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Part V contains two chapters that explore legal and ethical “borderlands” in death and dying. At one time, standards about life and death, good and bad, right and wrong may have seemed fairly certain, but advances in technology and changing times have created fuzzier boundaries and difficult choices.

Chapter 12 explores the issue of physician-assisted death: physician-assisted suicide and euthanasia. Although physician-assisted suicide is not the preferred term, I use it here to distinguish between the form of physician-assisted death in which individuals smust take a lethal dose of medication themselves from the form of physician-assisted death in which the physician administers it directly. Physician-assisted suicide, now legal in California, Colorado, Hawaii, Montana, Oregon, Washington, Vermont, and the District of Columbia, is about physicians using their medical expertise to help terminally ill people end their own lives. The physician typically provides the drug; the patient must consume it themselves. Some patients—for instance those suffering from ALS, or Lou Gehrig’s disease, may not be able to act on their wishes and may want more (i.e., voluntary euthanasia), or want someone else to take action that will end their lives. Legal in Colombia, Canada, the Netherlands, Belgium, and Luxembourg, it is a much more difficult topic for the health care professional in the U.S.

Chapter 13 takes on the issues of withdrawing life support and organ transplantation. It includes discussion of “brain death,” harvesting human organs, and what to do when an individual falls into a persistent vegetative state or coma or has “locked-in syndrome.” Because technology makes it possible for us to artificially keep a body “alive” almost indefinitely doesn’t necessarily mean we know when we ought or ought not do this.

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CHAPTER

Physician-Assisted Death

■ Core Concepts

■ The Kevorkian Debate: One-Man Campaign of “Dr. Death”

■ Legalizing Physician-Assisted Suicide in the U.S.

■ Voluntary Euthanasia

■ Unintentional Overdose

■ The Principle of Double Effect

■ Illicit Hastened Death

■ Moral and Ethical Concerns

In Chapters 3 and 8 , we discussed the story of Morrie Schwartz, a kindly retired sociology professor, who made it a point to learn as much as he could about dying and to share what he had learned about living. As you may recall, Morrie had ALS, or Lou Gehrig’s disease. The course of illness with ALS varies from person to person. However, muscle degeneration usually leads to paralysis, often resulting in death from choking (PubMed, 2011). Morrie faced his death courageously at home, surrounded by his many friends and family. The kind of death Morrie achieved, however, is not always possible nor is it always desirable. Many other patients with ALS report that they want the option of physician-assisted death. In one study of ALS patients in the Pacific Northwest, a majority of ALS patients said they would seriously consider physician-assisted suicide before their disease progressed to its final stages (Ganzini, Johnston, McFarland, Tolle, & Lee, 1998).

In Chapter 9 , we discussed hospice and palliative care, considered by many to be the “gold standard” for end-of-life care. But what about those who prefer to end their suffering without going through the rigors of a long-drawn-out process, such as what so often happens with life-threatening illnesses, such as cancer and ALS? In March 2010, the Public Broadcasting Service aired a Frontline episode profiling the story of Craig Ewert. As highlighted below, Craig and his wife, Mary, then living in the United Kingdom, traveled to Switzerland to get physician-assisted suicide for Craig because he wanted help in dying but was not a resident of a country that permitted it. Switzerland, where physician-assisted suicide is lawful, did not require recipients to be legal residents.

BOX 12.1

As Long as One Remembers

Craig Ewert was 59 years old when he and his wife, Mary, came to Zurich, Switzerland. They had been college sweethearts in Chicago but would say their last good-byes in Zurich (The Independent, 2008; Zaritsky, 2010). Since being diagnosed with ALS five months previously, Craig’s condition deteriorated rapidly. By the time they arrived in Zurich, he had lost the use of his arms, was losing the use of his legs, and was dependent on a portable ventilator to breath. According to Mary, ALS was his worst nightmare, since for a long time he had had a fear of paralysis and suffocation (The Independent, 2008).

Craig contacted Dignitas, a Swiss-based right-to-die organization. Physician-assisted suicide is legal in Switzerland and Swiss law did not require patients to be Swiss residents. John Zaritsky, a documentary film director, had also been in touch with Dignitas because he was interested in the topic. Dignitas put Craig in touch with Zaritsky and they agreed to film his ending (The Independent, 2008). According to Mary, Craig agreed to film it because he felt it was important for all of us to learn how to face death honestly. After Craig and his medical records were examined by a doctor, Craig and Mary were taken to an apartment that had been rented by Dignitas. Everything was explained and Craig, still able to swallow, drank the deadly drugs through a straw. Before he died, Craig commented that a person “is not completely gone as long as one person remembers his name.”

In this chapter, we consider the issues involved with two highly controversial end-of-life topics: physician-assisted suicide and voluntary euthanasia. We look at definitions that are critical to understanding the key issues linked to hastened death before exploring the topic itself, beginning with the one-man right-to-die crusade of Dr. Jack Kevorkian, a former pathologist turned “death counselor.” He challenged the legal system in the U.S. and lost, but he also managed to make the issue of death with dignity part of everyday conversation. We also review a few key legal cases that paved the way for the legalization of physician-assisted suicide in the U.S., initially in Oregon, then in six other states plus the District of Columbia (Death with Dignity, 2018). We also discuss the relaxation of physician-assisted death laws in several European countries. Finally, we explore a few of the moral and ethical concerns.

CORE CONCEPTS

It is a very fine line between using terminal sedation (medically induced coma) or using a potentially lethal dose of narcotics to control pain, and euthanasia or physician-assisted suicide. In Chapter 9 , we briefly touched on the former. In this section of the present chapter we focus on the latter.

Hastened death is any act that speeds the dying process. Euthanasia is the act of deliberately causing the death of another for reasons that are believed to be beneficial (Emanuel et al., 2016; Kimuyu, 2018). There are two basic types, active and passive euthanasia. Active euthanasia involves actively taking steps with the intent of ending another’s life. Passive euthanasia, on the other hand, involves withholding necessary life-sustaining measures for the same purpose (Emanuel et al., 2016; Kimuyu, 2018). Physician-assisted suiciderefers to physicians using their medical expertise with the aim of helping another end their life by providing patients with a prescription for medication that will painlessly end their lives (Emanuel et al., 2016; Kimuyu, 2018). These days, the term physician-assisted death is often used almost interchangeably for physician-assisted suicide (Death with Dignity, 2018), which this author believes is actually a narrower concept. So, in this chapter the term physician-assisted death is used to indicate any manner by which a physician brings about death, i.e., through directly administering a medication or by providing it to a patient to take him- or herself.

Physician-assisted suicide can be accomplished in many ways, but it is perhaps most often done by prescribing a lethal drug or a fatal dose of an otherwise nonlethal medication (Emanuel et al., 2016; Kimuyu, 2018). In the preceding paragraph, the word intent was emphasized because it is a key to distinguishing euthanasia and physician-assisted suicide from other acts that can result in death but that are not explicitly intended to end life. When such an act is intended to relieve suffering and only incidentally causes death, it is consistent with the principle of double effect (which will be discussed in more detail later in the chapter). Thus, it does not constitute euthanasia or physician-assisted suicide (EPEC Project, 1999; Emanuel et al., 2016; Kimuyu, 2018). In such instances, death is usually attributed to the underlying illness and not the unintended effects of using the analgesic medication. In addition to unintentional death caused by legitimate use of opioids to control pain there is recent concern about deaths related to the unintended death by prescription drug abusers (Helmerhorst et al., 2017). Because of this concern, there have been efforts to tighten access to opioid medication. A concern for death-with-dignity advocates is that access to analgesic drugs by legitimate users, like cancer patients, might become more difficult.

There are two other categories of euthanasia: nonvoluntary euthanasia and involuntary euthanasia. Nonvoluntary euthanasia is defined as deliberate administration of life-shortening substances with the intentof ending the life of a person who is not capable of making this choice for him- or herself (Giesen, 1997, cited in Amarasekara & Bagaric, 2004; Emanuel et al., 2016; Kimuyu, 2018). Involuntary euthanasia, for example, was used by the Nazi regime to eliminate individuals it regarded as undesirable—the physically deformed, mentally incapacitated, and others it did not consider to be contributing members of the society. It is the act of ending another’s life against their will and without their consent (Emanuel et al., 2016; Kimuyu, 2018).

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Dr Philip Nitschke, an Australian physician and death-with-dignity advocate, holds up a drug testing kit that is used in assisted suicides.

In recent days, voluntary euthanasia and physician-assisted suicide have become the focus of much public debate about end-of-life choices. They first achieved notoriety in the U.S. because of the controversy surrounding the activities of Dr. Jack Kevorkian.

THE KEVORKIAN DEBATE: ONE-MAN CAMPAIGN OF “DR. DEATH”

The public debate about physician-assisted suicide and euthanasia in the United States became noteworthy largely as the result of the ballyhoo surrounding the activities of the late Dr. Jack Kevorkian. When Kevorkian began his activities, he was a retired pathologist, a licensed physician who began to advertise his services as a physician and “death counselor” in the local paper.

Kevorkian, dubbed “Dr. Death” early in his medical career by his colleagues because of his fascination with death, was sentenced to prison on April 13, 1999, for second-degree murder in the death of Thomas Youk (CNN, 1999). Youk, age 52, was suffering from ALS. He wanted physician-assisted suicide, and sought out Dr. Kevorkian, who by then had become quite well known. Youk wanted help in ending his life before ALS rendered him completely unable to do so.

Kevorkian assisted Youk and videotaped his death in Michigan, which he later gave to the CBS-TV show 60 Minutes. This time, Kevorkian actually injected Youk with the lethal drug himself. This turned out to be a final act of defiance the justice system was unable to tolerate. His one-man campaign to help people die humanely was both an affront to the legal system and the stuff of folk legend. With the 60 Minutes footage there for all to see, Kevorkian was convicted. Melody and Terry Youk, Thomas’s widow and brother, were prohibited from testifying during the trial but went to Kevorkian’s defense during the sentencing phase. Mrs. Youk testified that, by the time of his death, her husband had lost all but the use of a thumb and two fingers and was by then losing the ability to speak.

Although Kevorkian had previously been acquitted in three other cases and had one mistrial, this time, faced with the evidence from the 60 Minutes tape and questions about whether or not Mr. Youk may have changed his mind at the last minute, the jury convicted Kevorkian of second-degree murder and violation of controlled substance laws. The murder conviction resulted from the act of administering the lethal drug. The controlled substance conviction is linked to his use of a controlled substance to kill Mr. Youk, since Kevorkian had been stripped of his license to practice medicine years before. As a result of these convictions, he was given a sentence of ten to 25 years in prison.

In 1997, two years before his conviction, the Detroit Free Press, which had closely followed Dr. Kevorkian’s duel with the legal system, ran a series of stories that chronicled 47 cases in which Kevorkian had a hand in someone’s death (the links have since been removed from the paper’s website). Sadly, a common feature in a great many of these cases was that the health care system had failed to provide adequate symptom relief to patients, who then turned to Dr. Kevorkian for help. By his own admission, Kevorkian was present at 130 suicides during his career (CNN, 1999). After his conviction in 1999, he became prisoner number 284797 at Thumb Correctional Facility in Lepeer, Michigan.

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Dr. Jack Kevorkian talks to college students about prison reform during a speech at Wayne State University. He was an outspoken advocate of death-with-dignity. He spent 7 years in prison following his conviction for second degree murder and delivery of a controlled substance in connection with the death of Thomas Youk, a man with ALS who had asked for his assistance in dying.

In December 2006, Michigan’s parole board granted Kevorkian’s request to leave prison on the basis of good behavior and his pledge to not assist in any further assisted suicides (Religion News Service, 2007). On June 1, 2007, he was released on parole. After his release, Kevorkian made an unsuccessful run for a seat in Congress. He continued to make public appearances advocating reforming the laws on hastened death until 2011, when he died in the hospital at age 83 (McClellen, 2011).

LEGALIZING PHYSICIAN-ASSISTED SUICIDE IN THE U.S.

Although it seems that many seriously ill people want to have assisted suicide open to them as an option, in the vast majority of U.S. states it is not permitted. In 1997, two cases (Washington v. Glucksberg and Vacco v. Quill) came before the U.S. Supreme Court challenging the laws of Washington state and New York (Snyder & Sulmasy, 2001). Two separate federal appeals courts had previously invalidated state laws banning physician-assisted suicide. The Supreme Court was asked to revisit the rulings. It did so, and in a 9–0 vote reversed the appeals court decision, ruling that the states had a legitimate stake in protecting human life. Therefore, it was lawful for states to use this authority to permit or prohibit physician-assisted suicide.

In 1994, Oregon narrowly passed a measure permitting physician-assisted suicide for certain terminally ill patients (Steinbrook, 2002). After its passage, several legal challenges were launched in an attempt to reverse this decision. Despite these efforts, the voters took to the ballot boxes once again in 1997, resoundingly reaffirming their earlier decision. The new law—known as the Death with Dignity Act—went into effect on October 27, 1997.

Despite early attempts by the then U.S. attorney general, John Ashcroft, to take punitive action against physicians who prescribed controlled substances under Oregon’s new law, it remains in force today (Ashcroft, 2001, cited in Lowenstein & Wanzer, 2002). The case made it all the way to the U.S. Supreme Court, where it was unanimously decided in a 2005 ruling affirming that Oregon had the authority to enact the law. Oregon’s law allows terminally ill Oregon residents (persons diagnosed as having six or fewer months to live) to get a prescription for a lethal dose of a controlled substance. It does not permit physicians to actually administer the drugs (which would constitute voluntary euthanasia). Refer to Figure 12.1 for a summary of the key provisions of Oregon’s Act.

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Pictured here, a close-up of US Attorney General John Ashcroft during a press conference at FBI headquarters in Washington D.C. on September 28, 2001. On November 6, he attempted to block the Oregon Death with Dignity Act by issuing a directive authorizing the DEA to investigate and prosecute doctors who prescribe controlled substances to help terminally ill patients die.

During the first five years the law was in effect, 129 people died from a lethal prescription they received under the Act (Sullivan, Hedberg, & Hopkins, 2001; Hedberg & Southwick, 2002; Hedberg, Hopkins, & Kohn, 2003). The vast majority of the deaths took place in the patient’s own home (94 percent). The drugs most often prescribed were barbiturates: secobarbital and pentobarbital (98 percent). Death took place between one and 38 minutes, but most often in five or fewer minutes. The most common diagnoses among those who chose physician-assisted suicide were cancer and ALS. Through 2010, a total of 525 Oregonians had ended their lives using medications prescribed under the Act (Oregon Public Health Division, 2011).

In neighboring Washington state, the campaign to legalize physician-assisted suicide picked up steam when Booth Gardner, a popular former governor, got involved. Then aged 71, Gardner became sympathetic to the cause after being stricken with debilitating Parkinson’s disease. He chose to make legalization of physician-assisted suicide in Washington his last campaign (Bergner, 2007). In November 2009, 58 percent of voters in Washington passed a referendum based on Oregon’s Death with Dignity Act. In 2010, its first full year in effect, 87 prescriptions were written under Washington’s new law. Medication was used by 51 Washingtonians to end their lives that year. Nearly 80 percent of those who took the lethal medication had cancer and 10 percent had ALS or another similarly acting neurodegenerative disease (Washington State Department of Health, 2011).

On December 31, 2009, the Montana Supreme Court ruled by a vote of five to two that doctors in Montana are protected from prosecution if they help a terminally ill patient die. However, the court was not explicit in saying that physician-assisted suicide is a constitutionally protected right. The ruling was made in response to a case filed by Robert Baxter, a 76-year-old retired truck driver who was suffering from lymphocytic leukemia (Johnson, 2009a, 2009b; James, 2010). The following vignette tells his story, see below.

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FIGURE 12.1 Summary of the Oregon Death with Dignity Act.

Source: Oregon Revised Statute 127, 800–860.

BOX 12.2

By All Accounts He Was a Tough Man

By all accounts, Robert Baxter was a tough man. But the 76-year-old retired truck driver wasn’t fighting traffic when he died. He was battling for the right to die with the help of his physician. He claimed that, because his doctor was prevented by state law from helping him die, his rights under Montana’s constitution were violated (Johnson, 2009a).

Once a robust man and avid outdoorsman, Baxter’s body had been so ravaged by his 12-year fight with lymphocytic leukemia and the effects of chemotherapy that he could no longer enjoy the busy, active life he once had. He was miserable, his daughter told ABC News. He didn’t have any fight left in him, and barely any meat on his bones (James, 2010). After stopping chemo in November 2008, he lost weight rapidly, shriveling into a mere shadow of what he had once been.

Baxter died on December 5, 2008, the very day the lower court handed down its decision in his favor (Johnson, 2009a). The ruling affirmed that doctors are protected from prosecution when they help a terminally ill patient die. The state appealed that decision to the Montana Supreme Court. Exactly four months later, on December 31, 2009, the seven-member Supreme Court upheld the lower court decision by a vote of five to two, making Montana the third state in the country to permit physician-assisted suicide (James, 2010).

Now, seven U.S. states plus the District of Columbia permit physician-assisted suicide: California, Colorado, Hawaii, Montana, Oregon, Washington, Vermont, and the District of Columbia, although the California law was briefly on hold because of a recent superior court decision (Death With Dignity, 2018). As discussed above, it has been legal in Montana since 2009 because of the Montana Supreme Court decision (Knaplund, 2010). Hawaii passed death-with-dignity legislation that will go into effect on January 1, 2019 (Death With Dignity, 2018).

VOLUNTARY EUTHANASIA

The Netherlands became the first country in the world to formally decriminalize voluntary euthanasia when the country’s senate passed legislation on April 10, 2001 (Netherlands Ministry of Foreign Affairs, 2001; Sheldon, 2001; Parry, Munson, & Pool, 2018). In 2002, Belgium passed a similar law, based on the Dutch law (McDougall & Gorman, 2008). In 2008, Luxembourg followed suit (Ponthus, 2008), making it the third member of the Benelux economic union to permit persons experiencing “unbearable suffering” to get assistance from a physician to end their lives. It is also now legal in Colombia (NBC News, 2005) and Canada (Government of Canada, 2018).

The Dutch law, which went into effect on April 1, 2002 (Netherlands Ministry of Foreign Affairs, 2004), exempts doctors from the penalties of existing law so long as they act with “due care,” follow strict guidelines, and report it. The law removed jurisdiction on physician-assisted suicide and voluntary euthanasia from the Public Prosecution Service and put the authority for oversight into the hands of newly created Regional Review Committees. See Figure 12.2 for an overview of the provisions of the Dutch law.

Although the law was new, the practice of physician-assisted suicide and voluntary euthanasia in the Netherlands was not. Tolerant attitudes toward many social issues—such as prostitution, homosexuality, and recreational drug use—seem to be well integrated in the national character. The acceptance of voluntary euthanasia and physician-assisted suicide seems entirely consistent with these attitudes. According to Gerrit Van der Wal, medical inspector for the Royal Dutch Medical Association, physician-assisted suicide and voluntary euthanasia have been practiced with ever-greater openness in the Netherlands since the 1970s (Van der Wal et al., 1996; also see Emanuel, 1997). Although the issues are still hotly debated, acceptance of physician-assisted suicide and voluntary euthanasia probably reflects a high degree of acceptance of individual choice by the Dutch public and professional community. It is also etched in Dutch case law (Van der Maas, Van Delden, Pijnenborg, & Looman, 1991; Van der Maas, Van Delden, & Pijnenborg, 1992; Van der Maas, Pijnenborg, & Van Delden, 1995, cited in Van der Wal et al., 1996).

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FIGURE 12.2 Summary of the Dutch Termination of Life on Request and Assisted Suicide (Review Procedures) Act.

Source: Netherlands Ministry of Foreign Affairs (2001, 2004).

While doing field research, this author was briefly in the Netherlands. While there, I was privileged to meet with three distinguished individuals, each of whom had very different perspectives on the Dutch physician-assisted death provisions: Dr. Rob Jonquiere, who was then the chief executive officer of NVVE, the Dutch Voluntary Euthanasia Society; Dr. Theo Boer, then a professor of systematic theology at Utrecht University; and Herman H. Van der Kloot Meijburg, a bioethicist, health care educator, and pastoral counselor. Their reflections may help put a human face on the oftentimes emotional and contentious issues (Jonquiere, 2001; Boer, 2001; Van der Kloot Meijburg, 2001).

BOX 12.3

Dr. Rob Jonquiere: An Intensely Personal Experience

Dr. Rob Jonquiere is a physician who first became interested in the dilemmas surrounding death and dying when he was a young man in medical school. He came across the book Medical Power and Medical Ethics, by Jan Hendrik Van den Berg, a famous Dutch psychiatrist (1969; English translation, 1978), which helped crystalize the issues for him. During his clinical training, like all doctors, he explained, he was confronted for the first time with dying people. He became a family physician, which put him in contact with all kinds of events in people’s lives, most poignantly birth and death. He related that the aspects of being a doctor he liked most were linked to those circumstances when he could spend time with his patients discussing their life situations. It was during this period, Van den Berg claimed, that patients naturally began to seek him out, asking for help with dying. The era was that of the late 70s and the beginning of the 80s, when the public debate on euthanasia in Holland was still new.

By the mid-80s, Dr. Jonquiere had helped two patients end their lives. When he described these experiences, I became very aware that for him the process leading to an agreement to end his patients’ lives was a deeply personal one, in which he and his patients grew together in their relationship. To provide some context, Dr. Jonquiere related that in the Netherlands everyone is covered by health insurance and that people have a real relationship with their family doctor. Long before health declines, he explained, there’s been plenty of opportunity to build a relationship. By the time death draws near, a lot has already been said. This is the kind of relationship where two people who respect and care about each other may speak freely about how to handle the end of life.

Dr. Jonquiere took his commitment to patient care into higher education, where he taught family practitioners at the university and nursing home physicians in the field. Eventually he was asked to lead the Dutch Voluntary Euthanasia Association, a step he describes as a natural one—the culmination of his experience and life career (Jonquiere, 2001).

Although the more tolerant policies on voluntary euthanasia and physician-assisted suicide enjoy the support of the vast majority of the Dutch people, perhaps as many as 80 percent, it is not unanimous. There are well-organized, vocal opponents, many of whom are strongly religious. Dr. Theo Boer’s name was provided by contacts within the Dutch Reformed Church because he was regarded as a theologian who had been a valued consultant on issues associated with euthanasia.

BOX 12.4

Dr. Theo A. Boer: Maybe How We Die Indicates How We Live

Dr. Theo Boer is a theologian with considerable interest in the Calvinist heritage of the Netherlands. In explaining why the Dutch have been so willing to adopt liberal reforms, he suggests that, because of the strong scriptural basis of this heritage, when the Dutch people began to question their religiously based beliefs they were more willing to toss out the whole system and start from scratch.

Boer agrees with advocates of euthanasia that sometimes there are situations where circumstances are so bad—a force majeure—that one must depart from the rules. He believes that human life is sacred, but says he is not opposed to euthanasia when a person is experiencing severe physical suffering. He believes, however, that the new law goes too far. It allows suffering to be subjectively defined by the individual. Boer points out that it doesn’t even require that the person be terminally ill. He cites two Dutch legal cases—Shabot and Brongersmaa—that establish psychological suffering as being sufficient to meet the requirements of the law.

I asked Dr. Boer about a concern that had been expressed to me about religiously oriented people imposing their values on others. He replied that the argument goes both ways. “When you’re a society either way will influence the other,” he said. “When you try to forbid euthanasia you impose your values on somebody else, but when you allow it . . . that will influence the society as a whole. I’m absolutely convinced about that.” The crux of Boer’s concern was that, by making euthanasia normative, it has become more difficult for members of the society to refuse it when their health fails. This puts them in a position where they may think they must go along with it, he said, even if they might prefer to stay alive a while longer. There is a danger that issues of the expense of care and stress on the health care system could come into play, he cautioned. He observed that:

■ ■ ■

In Holland people are very hard working. I think we may be one of the most productive countries in the world, with an unemployment rate of only 1.5 percent. Women are very much in the labor process. . . . This means people don’t have very much time to be concerned about caring for their parents. When it takes longer . . . and it threatens to last for two or three years, people cannot take holidays any more . . . then, I think it could be a pressure.

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Boer’s parting words were, “Maybe how we die indicates how we live” (Boer, 2001).

The Netherlands is a country with a population of approximately 17.2 million people (Population Counter, 2018). Nearly 150,000 people die there each year. In 2016, there were 6,091 actual cases of voluntary euthanasia and physician-assisted suicide ( DutchNews.nl , 2017; Regional Euthanasia Review Committees, 2016). The country integrates palliative care into primary care, hospital care, nursing care, and seven integrated cancer centers. The hospice movement in the Netherlands is relatively small and mostly affiliated with various religious groups (Dutch Voluntary Euthanasia Society, 2001). Herman H. Van der Kloot Meijburg, an ethicist, educator, and pastoral counselor, was once a strong supporter of liberalizing physician-assisted suicide and voluntary euthanasia in the Netherlands. In more recent days, however, his support for voluntary euthanasia has waned as a result of his conviction that there is a need for more hospice and palliative care in the Netherlands. Below, read his comments and reflections about the death of his own father through voluntary euthanasia.

BOX 12.5

Herman H. Van der Kloot Meijburg: Not Only Is It You Who’s Dying, But We Will Have to Take Leave of You

Herman H. Van der Kloot Meijburg is an ethicist with a broad background in nursing education, workshop training, and pastoral care. For many years he had supported the efforts to liberalize policies on euthanasia. His father, who was nearly 90 years old, developed ALS in his old age. The senior Mr. Meijburg was married to Herman’s mother for nearly 60 years. Unfortunately, she was afflicted with Alzheimer’s disease and finally had to be placed in a nursing home. Herman’s father visited his wife regularly until he himself moved into the same nursing home. His father’s condition eventually deteriorated. His appetite waned. Finally, even the daily beer he had enjoyed didn’t taste so good any more. The thickener they put in it because of his ALS ruined the flavor. He weakened. Finally, he lost interest in living.

It seemed to Herman that something had changed—his father seemed to have one foot on the other side. One day the nursing home physician told Herman that his father had asked for help in ending his life. Herman recalls earlier conversations with his father about euthanasia. He remembers having said to him, “Not only is it you who’s dying (in this situation), but we who will have to take leave of you.” The message was that he shouldn’t make a decision about euthanasia without talking with the rest of the family.

Always before, Herman’s father agreed to go on living. This time he and his doctor seemed to be in agreement. ALS had taken its toll. He was dependent on others for everything. The kind of death he would have with ALS wouldn’t be pleasant. He would suffocate. Mr. Meijburg senior didn’t want to continue. Herman recalls that he, his sister, and his father had said their last good-byes before the doctor administered the medication. Herman’s father went to sleep and never woke up. It wasn’t even recorded as a case of euthanasia, Herman remembers. The municipal authorities wouldn’t classify it this way. They said it was really just terminal sedation.

One of the great moral issues in health care and one of the biggest differences between hospice and the Dutch euthanasia movements has to do with how we define euthanasia, Herman explained. With hospice, you allow the person to die, and with euthanasia, a medical person administers a drug. Who’s really making the decision helps define it. “It’s vital that the moral issues be reckoned with,” he said. “I really support the idea of care, whatever the decision” (Van der Kloot Meijburg, 2001).

UNINTENTIONAL OVERDOSE

When attempting to alleviate severe pain, powerful analgesics, such as morphine and other opioids, are often used. The appropriate amount and type of medication depend on the severity of symptoms and the tolerance to the effects of the drug. Too little medication and the person suffers; too much, and heartbeat and respiration may become depressed enough to result in death. Sometimes health care professionals admit there is a very fine line between the two. When strong medication is used to control pain and the person dies, it is generally presumed that the person died from the illness. In this situation, even if death actually resulted from the use of medication, it can be justified by the principle of double effect, a long established ethical doctrine, which we discuss next.

THE PRINCIPLE OF DOUBLE EFFECT

The principle of double effect is an ancient doctrine with application to today’s tough medical dilemmas. With deep roots in Christian theology, it’s a centuries-old precept of the Roman Catholic Church, used to help guide decisions on how to proceed when there are both desirable and undesirable potential outcomes (Krakauer et al., 2000; Potter, 2015; Drew & Grant, 2017). It’s relevant today because the principle has been widely accepted by medical decision-makers and Church leaders alike. Bioethicists and those theologians who specialize in dealing with end-of-life questions have found the principle helpful (Barry & Maher, 1990; Derse, 2000; Keenan, 1993; Krakauer et al., 2000; O’Rourke, 1989; Rousseau, 2001; Potter, 2015; Drew & Grant, 2017).

Without delving too deeply into the philosophical or theological issues, the principle asserts that an action with one good and one bad possible effect is morally defensible if four conditions are met:

1. Whatever action is taken cannot of itself be immoral.

2. The action must be undertaken with the intent of achieving the good effect, not the bad, even if it’s possible to foresee the potential bad effect. The action cannot be intended to cause the bad effect.

3. The action must not achieve the good effect by means of the bad effect.

4. The action must be proportional (it accomplishes more good than bad).

To apply the principle to a case where an individual is being treated for severe pain, for example, one would need to consider the proposed course of action (administration of analgesic medication); the intent (good rather than bad, e.g., the action might be intended to normalize the dying process and ease the emotional strain on the family, not cause death per se); that you do not accomplish the good (relief from suffering) through the bad (death); and that the course of action accomplishes more good than bad.

ILLICIT HASTENED DEATH

Unlike unintentional overdose, discussed above, illicit hastened death goes further. When it involves administering medication or engaging in acts to a critically ill person with the intent of causing a person’s death, it is active euthanasia. When a health care practitioner withholds something necessary for life with the intent of hastening the person’s death, it is passive euthanasia. Active or passive, voluntary or involuntary, euthanasia is unlawful in all 50 U.S. states. Voluntary euthanasia is permitted in only a few countries around the world (see above). In health care circles, however, there has been speculation for some time that euthanasia may be happening more often than we think.

Dr. David Asch, a Veterans Administration physician, conducted a study in an effort to find out about the attitudes and actions of critical care nurses about euthanasia (Asch, 1996). He found that, of the critical care nurses who responded to his survey, about 17 percent said they had received requests from patients or family members for assistance; 16 percent of the nurses reported actually providing it. In addition, 4 percent said they had deliberately hastened a patient’s death by only pretending to provide life-sustaining treatment.

In another study, this one involving physicians, Diane Meier and colleagues from the Mt. Sinai School of Medicine found that about 18 percent of physicians in specialties likely to face this issue had received a request for suicide assistance. According the study results, 11 percent of the physicians were asked to administer a lethal injection (Meier et al., 1998); 16 percent of those who had been asked provided some kind of assistance in ending a patient’s life. About 5 percent followed through on a request for a lethal injection. The more recent literature is surprisingly mute on the subject. When conducting a search of the literature on the topic this author was unable to find more recent reports explicitly looking into illicit hastened death.

MORAL AND ETHICAL CONCERNS

In the previous section, we concluded with a few reflections of Herman H. Van der Kloot Meijburg, whose father, suffering from ALS at age 90, died at his own request from a lethal injection. By Herman telling his father that not only would his father being taking leave of his family but that they would have to take leave of him, he was also pointing out that the consequences of even seemingly individual decisions, like choosing a death of one’s own, also have an impact on others. While Meijburg had been at the forefront of the movement to decriminalize voluntary euthanasia in the Netherlands, in more recent years he became active in the development of hospice and palliative care programs in the Netherlands (see Van der Kloot Meijburg, 2003).

A concern about relaxing laws on physician-assisted suicide and euthanasia is that emphasizing the use of hastened death can detract from awareness about the need for and availability of hospice and palliative care. Dr. Ezekiel Emanuel is a leading opponent of physician-assisted suicide and voluntary euthanasia. As early as 1997, long before the Netherlands and other European countries enacted permissive laws on hastened death, Emanuel wrote extensively about what he saw as potential pitfalls (Emanuel, 1997).

BOX 12.6

Professional Profile: Ezekiel J. Emanuel, M.D., Ph.D.

Ezekiel J. Emanuel is a senior fellow at the Center for American Progress, chair of the Department of Medical Ethics and Health Policy, University of Pennsylvania, and vice-provost for global initiatives, University of Pennsylvania. He earned his medical degree and a doctorate in political philosophy from Harvard University. He is a medical oncologist, specializing in the treatment of breast cancer.

His father was born Benjamin M. Auerbach, and his father’s brother, Emanuel Auerbach, was killed during the 1936 Arab Riots in the former British Mandate of Palestine (present-day Israel, Jordan, the Palestinian territories, and parts of Saudi Arabia and Iraq). After Emanuel Auerbach’s death, the family changed its name to Emanuel to honor his memory.

Ezekiel Emanuel is a leading opponent of physician-assisted suicide and euthanasia. He points to the Hippocratic Oath as evidence that medical technology in itself is not the cause of today’s ethical dilemmas. He believes that legalizing physician-assisted suicide and decriminalizing euthanasia is harmful because it acts to decrease public support for pain management and mental health care for individuals suffering from life-threatening illnesses. His brother, Rahm, is the present mayor of Chicago and was previously President Obama’s chief of staff.

In an article written for a general audience, Emanuel observed that in ancient Greece, at a time when physicians commonly provided euthanasia and assisted suicide for ailments ranging from foot infections to senility, the Hippocratic Oath actually represented a minority view (Emanuel, 1997). The oath enjoins physicians to “neither give a deadly drug if asked . . . nor make a suggestion to that effect” (Tyler, 2001).

Emanuel acknowledges that the majority of Americans support physician-assisted suicide and voluntary euthanasia on a conceptual level, but that this support is not resounding or universal (Emanuel, 1997). He observes that about one-third are strongly in favor, about one-third are opposed, and another one-third support it in some cases but not others, usually when patients are terminally ill and experiencing relentless pain. Emanuel points out that about two-thirds of Americans oppose state-sanctioned physician-assisted suicide and voluntary euthanasia when terminally ill patients are not in severe pain but want to ease the burden on their families or avoid a long-drawn-out dying process.

A concern of opponents to voluntary hastened death centers on the so-called slippery slope hypothesis. It suggests that, if society relaxes its laws on hastened death, it can result in a shift from permitting willing, competent, consenting adults to end their lives to imposing hastened death on those who cannot make this decision for themselves: the unconscious, the demented, the mentally ill, and children (Emanuel, 1997). As discussed earlier, it is the difference between voluntary and nonvoluntary euthanasia. Indeed, there is debate in the literature about the spread of nonvoluntary euthanasia in jurisdictions where laws on voluntary euthanasia have been relaxed (Amarasekara & Bagaric, 2004; Jotkowitz, Glick, & Gesundheit, 2008; Sayers, 2007).

Before the Dutch law was enacted in 2001, permissive attitudes toward hastened death had already become well rooted in the Netherlands. In 1981, the prosecution service and the nation’s medical society came to an agreement about a set of guidelines. If physicians followed these guidelines, the government agreed not to prosecute (Emanuel, 1997). Based on information submitted in compliance with the new reporting rules, the Dutch government conducted a systematic review of hastened death, which became known as the Remmelink Report, named after Jan Remmelink, the head of the commission who conducted the review. The commission submitted its final report in 1990. A follow-up was completed five years later, and then in 2001 (Canady, 1998; Fenigsen, 1997; Onwuteaka-Philipsen et al., 2003).

In 1990, there were 9,000 requests for hastened deaths (Fenigsen, 1997). Some 2,300 people were given active voluntary euthanasia and 400 received medication from their physician with which to commit suicide. There were also 1,000 cases in which patients were given euthanasia without their explicit request. In addition, there were 4,941 cases in which patients were given lethal doses of morphine-like sedatives that resulted in death. In 1995, the number in each of these categories was slightly higher (Fenigsen, 1997). For a visual display of results, refer to Table 12.1 .

Although there were a significant number of nonvoluntary euthanizations, overall the Dutch authorities were generally pleased with improvements from 1990 to 1995. They seemed to feel that the agreement between the prosecution service and the country’s physicians was a workable solution. As a result, the nation’s controversial euthanasia and assisted suicide law was formally enacted in 2001. You might want to revisit Figure 12.2 for a summary of its requirements (Netherlands Ministry of Foreign Affairs, 2001, 2004).

To date, there has been one additional follow-up of the Remmelink Report done in 2001 (Onwuteaka-Philipsen et al., 2003; World Federation of Right to Die Societies, 2018). The key findings suggest there is no empirical support for the assertion that the Netherlands is “going downhill” with respect to life-terminating treatment by physicians; the rate of voluntary euthanasia and physician-assisted suicide appears to have stabilized; physician-assisted death was no more frequent than in 1995; and inadequate palliative care was not a factor in end-of-life decisions.

TABLE 12.1

Euthanasia and Physician-Assisted Suicide in the Netherlands, 1990–1995, 2001, and 2016

image

*Data not reported

Sources: Fenigsen, 1997. Dutch Euthanasia Revisited. Issues in Law & Medicine, 13, 301–311 (for 1990 and 1995 data); Onwuteaka-Philipsen et al., 2003 (for 2001 Remmelink Report data); Regional Euthanasia Review Committees, 2016 (for 2016 data); World Federation of Right to Die Societies, 2018 (for 2001 Remmelink Report data)

Opponents of voluntary euthanasia and physician-assisted suicide, like Emanuel, observe that the people most concerned about these choices seem to be the people most likely to be abused and coerced: the old, the poor, and minorities (Emanuel, 1997). In addition, there is the question about what to do about the suffering of people with mental illness.

In Oregon and Washington, physicians are required to refer anyone to counseling whose mental condition, such as depression, might have influenced their request (Oregon Public Health Division, 2011). In the Netherlands, this is not so. For example, Dr. Boudewijn Chabot, a psychiatrist, helped a 50-year-old depressed woman, who was otherwise in good health, to commit suicide because she wanted to die instead of treating her depression. Dr. Chabot was prosecuted for his actions. The Dutch Supreme Court ultimately heard the case. It ruled that mental suffering can be as intolerable as physical suffering. Therefore, the high court decided that the actions of Dr. Chabot could be legally justified (Canady, 1998).

In addition to the potential misuses of assisted death with people whose judgment is impaired by their mental condition, there is also concern about the abuse and coercion of other vulnerable populations. Advocates of the right to die suggest that many people are reassured when they know physician-assisted suicide and voluntary euthanasia are an option, but opponents argue that vulnerable populations may feel equally fearful, suspicious, and worried about having their lives ended prematurely without their consent.

Critics of legally sanctioned hastened death contend that once the relaxed standards become the new norm, it will become all too easy for the general population to become so complacent with hastened death that they may also become less vigilant in protecting the vulnerable against its abuses. Emanuel (1997) advances the argument that, once hastened death is legal, health care providers will be able to defend even questionable behavior by asserting that it is legally protected. If true, they suggest, it could result in being on a “slippery slope” in which we all become vulnerable to abuses (Emanuel, 1997; Emanuel et al., 2016).

Chapter Summary

The chapter began with a general discussion of some of the tough issues faced when dealing with life-threatening illness. Although many people are well served by hospice and palliative care, some do not want to endure the rigors of a long, painful death. For this reason, some seek out ways to alleviate their suffering by hastening their death. We briefly reviewed some of the particulars surrounding the ballyhoo of Dr. Kevorkian’s one-man campaign to provide and publicize physician-assisted suicide.

Although the U.S. Supreme Court ruled in two precedent-setting cases (Washington v. Glucksberg and Vacco v. Quill) that states have the right to prohibit or permit physician-assisted suicide, it is lawful in only seven U.S. states. Oregon was the first to authorize physician-assisted suicide for terminally ill people. Even so, Oregon encountered stiff opposition from the then U.S. attorney general, John Ashcroft. Oregon appealed to the U.S. Supreme Court, which upheld Oregon’s right to enact assisted suicide legislation. Washington based its law on Oregon’s. Within a few years, laws were passed in California, Colorado, Hawaii, and Vermont, although the California law was on hold during the work on this second edition. In Montana, the matter was settled by a State Supreme Court decision.

We discussed unintentional overdose and the principle of double effect as a way to distinguish between efforts to alleviate suffering and illicit hastened death. We noted that illicit hastened death is the deliberate ending of life, which research suggests might happen more often than we think.

Then we explored voluntary euthanasia, which was first decriminalized in the Netherlands. Since then it has been decriminalized in Belgium, Canada, Colombia and Luxembourg. You heard from three Dutch professionals about their experience: the former head of the Dutch Voluntary Euthanasia Society, a theologian, and a pastoral counselor. Each expressed quite different views.

The chapter concluded with a brief review of concerns raised by critics of relaxed standards with respect to physician-assisted suicide and voluntary euthanasia. We profiled Ezekiel Emanuel, one such critic, and examined some of the arguments he and others have advanced in support of erring on the side of caution.

Key Terms

active euthanasia

Death with Dignity Act

euthanasia

hastened death

involuntary euthanasia

nonvoluntary euthanasia

passive euthanasia

physician-assisted death

physician-assisted suicide

principle of double effect

voluntary euthanasia

Suggested Activities

1. Make a list of diseases that friends or family members have had. Consider what kinds of life-threatening illnesses you yourself might develop. Write a one-page description on how you would want to handle the situation.

2. Do some Internet research on the use of analgesic medication to control pain. What do the experts say about the effectiveness of these medications on life-threatening illnesses such as cancer? What would you do if the medications used to treat you or a loved one were not effective? What resources are available in your community?

3. Carefully review the interview summaries of Dr. Rob Jonquiere, Dr. Theo Boer, and Herman Van der Kloot Meijburg. Compare their positions and consider areas of agreement and disagreement. What issues or problems with physician-assisted suicide and euthanasia seem to surface when you reflect on what they had to say?