Euthanasia, Assisted Suicide & Health Care Decisions:Protecting Yourself & Your Family

Table of Contents |Part 1 |Part 2

byRita L. Marker

INTRODUCTION

The words euthanasia and assisted suicide are often used interchangeably. However, they are different and, in the law, they are treated differently. In this report, euthanasia is defined as intentionally, knowingly and directly acting to cause the death of another person (e.g., giving a lethal injection). Assisted suicide is defined as intentionally, knowingly and directly providing the means of death to another person so that the person can use that means to commit suicide (e.g., providing a prescription for a lethal dose of drugs).

Part I of this report discusses the reasons used by activists to promote changes in the law; the contradictions that the actual proposals have with those reasons; and the logical progression that occurs when euthanasia and assisted suicide are transformed into medical treatments. It explores the failure of so-called safeguards and outlines the impact that euthanasia and assisted suicide have on families and society in general.

Withholding and withdrawing medical treatment and care are not legally considered euthanasia or assisted suicide. Withholding or withdrawing food and fluids is considered acceptable removal of a medical treatment.

Part II of this report includes information about practical ways to protect oneself and loved ones during any time of incapacity and a discussion of some of the policies that have led to patients being denied care that they or their decision-makers have requested. It concludes with an examination of the ethical distinction between treatment and care.

PART I

EUTHANASIA & ASSISTED SUICIDE

MOVING THE BOUNDARIES

In 2002, the International Task Force report, Assisted Suicide: Not for Adults Only? (1) discussed euthanasia and assisted suicide for children and teens. At that time, such concerns were largely considered outside the realm of possibility.

Then, as now, assisted-suicide advocates claimed that they were only trying to offer compassionate options for competent, terminally ill adults who were suffering unbearably. By and large, their claims went unchallenged.

A crack in that carefully honed image appeared in 2004 when the Groningen Protocol elicited worldwide outrage. The primary purpose of that protocol formulated by doctors at the Groningen Academic Hospital in the Netherlands was to legally and professionally protect Dutch doctors who kill severely disabled newborns. (2)

While euthanasia for infants (infanticide) was not new, widespread discussion of it was. Dutch doctors were now explaining that it was a necessary part of pediatric care.

Also in 2004, Hollands most prestigious medical society (KNMG) urged the Health Ministry to set up a board to review euthanasia for people who had no free will, including children and individuals with mental retardation or severe brain damage following accidents. (3)

At first, it seemed that these revelations would be harmful to the euthanasia movement, but the opposite was true.

Why?

Awareness of infanticide and euthanasia deaths of other incompetent patients moved the boundaries.

Prior to the widespread realization that involuntary euthanasia was taking place, advocacy of assisted suicide for those who request it seemed to be on one end of the spectrum. Opposition to it was on the other end.

Now, the practice of involuntary euthanasia took its place as one extreme, opposition to it as the other extreme, and assisted suicide for terminally ill competent adults appeared to be in the moderate middle a very advantageous political position and expansion of the practice to others had entered the realm of respectable debate.

This repositioning has become a tool in the assisted-suicide arsenal. In May 2006, an assisted-suicide bill, patterned after Oregons law permitting assisted suicide, failed to gain approval in the British Parliament. The bills supporters immediately declared that they would reintroduce it during the next parliamentary session.

Within two weeks, Professor Len Doyal a former member of the British Medical Associations ethics committee who is considered one of Englands leading experts on medical ethics called for doctors to be able to end the lives of some patients swiftly, humanely and without guilt, even without the patients consent. (4) Doyals proposal was widely reported and, undoubtedly, when the next assisted-suicide bill is introduced in England, a measure that would permit assisted suicide only for consenting adults will appear less radical than it might have seemed prior to Doyals suggestion.

Currently, euthanasia is a medical treatment in the Netherlands and Belgium. Assisted suicide is a medical treatment in the Netherlands, Belgium and Oregon. Their advocates erroneously portray both practices as personal, private acts. However, legalization is not about the private and the personal. It is about public policy, and it affects ethics, medicine, law, families and children.

A FAMILY AFFAIR

In December 2005, ABC News World News Tonight reported, Anita and Frank go often to the burial place of their daughter Chanou. Chanou died when, with her parents consent, doctors gave her a lethal dose of morphine. Im convinced that if we meet again somewhere in heaven, her father said, shell tell us we reached the most perfect solution.'(5)

The report about the six-month-old Dutch childs death was introduced as a report on the debate over euthanizing infants. A Dutch legislator who agrees that doctors who intentionally end their tiny patients lives should not be prosecuted said, Im certainly pro-life. But Im also a human being. I think when there is extreme, unbearable suffering, then there can be extreme relief. (6)

Gone was the previous years outrage over the Groningen Protocols. Infanticide had entered the realm of respectable debate in the mainstream media. The message given to viewers was that loving parents, compassionate doctors and caring legislators favor infanticide. It left the impression that opposing such a death would be cold, unfeeling and, perhaps, intentionally cruel.

In Oregon, some assisted-suicide deaths have become family or social events.

Oregons law does not require family members to know that a loved one is planning to commit suicide with a doctors help. (7) Thus, the first knowledge of those plans could come when a family member finds the body. However, as two news features illustrate, some Oregonians who die from assisted suicide make it a teachable moment for children or a party event for friends and family.

According to the Mail Tribune (Medford, Oregon), on a sunny afternoon, Joan Lucas rode around looking at houses, then she sat in a park eating an ice cream cone. A few hours later, she committed suicide with a prescribed deadly drug overdose. Grandchildren were made to understand that Grandma Joan would be going away soon. Those who were old enough to understand were told what was happening. (8

Did these children learn from Grandma Joan that suicide is a good thing?

UCLAs student newspaper, the Daily Bruin, carried an article favoring assisted suicide. It described how Karen Janoch who committed suicide under the Oregon law, sent invitations for her suicide to about two dozen of her closest friends and family. The invitation read, You are invited to attend the actual ending of my life. (9) At the same time Californias legislature was considering an assisted-suicide bill that was virtually identical to Oregons law, UCLA students learned that suicide can be the occasion for a party.

In Oregon, assisted suicide has gone from the appalling to the appealing, from the tragic to the banal.

During the last half of 2005 and the first half of 2006, bills to legalize assisted suicide were under consideration in various states and countries including, but not limited to, Canada, Great Britain, California, Hawaii, Vermont, and Washington. All had met failure by the end of June 2006. But plans to reintroduce them with some cosmetic changes are currently underway. A brief examination of arguments used to promote them illustrates the small world nature of assisted-suicide advocacy.

TWO PILLARS OF ADVOCACY

Wherever an assisted-suicide measure is proposed, proponents arguments and strategies are similar. Invariably, promotion rests on two pillars: autonomy and the elimination of suffering.

Autonomy

Autonomy (independence and the right of self-determination) is certainly valued in modern society and patients do, and should, have the right to accept or reject medical treatment. However, those who favor assisted suicide claim that autonomy extends to the right of a patient to decide when, where, how and why to die as the following examples illustrate.

During debate over an assisted-suicide measure then pending before the British Parliament, proponents emphasized personal choice. The bill, titled The Assisted Dying for the Terminally Ill Bill, was introduced by Lord Joel Joffe. Dr. Margaret Branthwaite, a physician, barrister and former head of Englands Voluntary Euthanasia Society (recently renamed Dignity in Dying (10)), called for passage of the Joffe bill in an article in the British Medical Journal. As a matter of principle, she wrote, it reinforces current trends towards greater respect for personal autonomy. (11)

The focus on autonomy was also reflected in remarks about a plan to introduce an assisted-suicide initiative in Washington. Booth Gardner, former governor of Washington, said he plans to promote the initiative because it should be his decision when and how he dies. He told the Seattle Post-Intelligencer, When I go, I want to decide. (12)

The rationale is that when, where, why and how one dies should be a matter of self-determination, a matter of independent choice, and a matter of personal autonomy.

Elimination of suffering

The second pillar of assisted-suicide advocacy is elimination of suffering. During each and every attempt to permit euthanasia and assisted suicide, its advocates stress that ending suffering justifies legalization of the practices.

California Assemblywoman Patty Berg, the co-sponsor of Californias euphemistically named Compassionate Choices Act, (13) said the assisted-suicide measure was necessary so that people would have the comfort of knowing they could escape unbearable suffering if that were to occur. (14)

In an opinion piece supporting the failed 1998 assisted-suicide initiative in Michigan, a spokesperson for those favoring the measure wrote that the patients targeted by the proposal were those who were tortured by the unbearable suffering of a slow and agonizing death. (15)

In the United Kingdom, Lord Joffe said his bill would enable those who are suffering unbearably to get medical assistance to die. (16) Testimony before the British House of Lords Select Committee studying the bill noted that, where assisted dying has been legalized, it has done so as a response to patients who were suffering. (17)

The centerpiece of the 1994 Measure 16 campaign that resulted in Oregons assisted-suicide law was a television commercial featuring Patti Rosen. Describing her daughter who had cancer, Rosen said, The pain was so great that she couldnt bear to be touched. Measure 16 would have allowed my daughter to die with dignity. (18)

When an assisted-suicide proposal that later failed was being considered by the Hawaiian legislature in 2002, a public relations consultant who was working on behalf of the bill, e-mailed a template for use in written or oral testimony. The template suggested inclusion of the phrases agonizingly painful, pain was uncontrollable, and pain beyond my understanding. (19)

During consideration of an assisted-suicide bill in Vermont, the states former governor Philip Hoff said, The last thing I would want in this world is to be around and be in pain, and have no quality of life, and be a burden to my family and others. (20) Dick Walters, chairman of Death with Dignity Vermont, said the proposal would permit a person to peacefully end suffering and hasten death. (21)

Thus, the rationale given by euthanasia and assisted-suicide proponents for legalization always includes autonomy and/or elimination of suffering. However, the laws they propose actually contradict this rationale.

CONTRADICTIONS

When proposed, laws such as those now in existence in Oregon and similar measures introduced elsewhere include conditions or requirements limiting assisted suicide to certain groups of qualified patients. A patient qualified to receive the treatment of assisted suicide must be an adult who is capable of making decisions and must be diagnosed with a terminal condition.

If one accepts the premise that assisted suicide is a good medical treatment that should be permitted on the basis of personal autonomy or elimination of suffering, other questions must be raised.

If the reason for permitting assisted suicide is autonomy, why should assisted suicide be limited to the terminally ill?

Does ones autonomy depend upon a doctors diagnosis (or misdiagnosis) of a terminal illness? If a person is not terminally ill, but is suffering whether physically, psychologically or emotionally why isnt it up to that person to decide when, why and how to die? Does a person only have autonomy if he or she has a particular condition or illness? Is autonomy a basis for the law?

If assisted suicide is a good and acceptable medical treatment for the purpose of ending suffering, why should it be limited to adults who are capable of decision-making?

Isnt it both discriminatory and cruel to deny that good and acceptable medical treatment to a child or an incompetent adult? Why is a medical treatment that has been deemed appropriate to end suffering available to an 18-year-old, but not to a 16-year-old or 17-year-old? Why is a person only eligible to have his or her suffering ended if he or she has reached an arbitrary age?

And, what of the adult who never was, or no longer is, capable of decision-making? Should that person be denied medical treatment that ends suffering? Are euthanasia and assisted-suicide laws based on the need to eliminate suffering, or not?

Establishing arbitrary requirements that must be met prior to qualifying for the medical treatment of euthanasia or assisted suicide does, without doubt, contradict the two pillars on which justification for the practices is based.

The question then must be asked: Why are those arbitrary requirements included in Oregons law and other similar proposals? The answer is simple. After a series of defeats, euthanasia and assisted-suicide proponents learned that they had to propose laws that appeared palatable.

In April 2005, Lord Joffe, the British bills sponsor, acknowledged that his bill was intended to be only the first step. During hearings regarding the measure, he said that this is the first stage and went on to explain that one should go forward in incremental stages. I believe that this bill should initially be limited. (22)

He repeated his remarks a year later when discussing hearings about his bill. I can assure you that I would prefer that the [proposed] law did apply to patients who were younger and who were not terminally ill but who were suffering unbearable, he said and added, I believe that this bill should initially be limited. (23)

STEP-BY-STEP APPROACH

Proposals for euthanasia and assisted suicide have always emanated from advocacy groups, not from any grassroots desire. Those groups learned that attempting to go too far, too fast, leads to certain defeat.

After many failed attempts, most recently those in the early 90s in Washington and California when ballot initiatives that would have permitted both euthanasia by lethal injection and assisted suicide by lethal prescription were resoundingly defeated death with dignity activists changed their strategy. They decided to take a step-by-step approach, proposing an assisted-suicide-only bill which, when passed, would serve as a model for subsequent laws. Only after several such laws were passed, would they begin to expand them. That was the strategy that led to Oregons Measure 16, the Oregon Death with Dignity Act.

Those who were most involved in the successful Oregon strategy were not new to the scene.

Cheryl K. Smith, who wrote the first draft of Oregons law, had served as a special counsel to the political action group Oregon Right to Die (ORD). Smith had been the National Hemlock Societys legal advisor after her graduation from law school in 1989 and had been a top aide to Hemlocks co-founder, Derek Humphry. While a student at the University of Iowa College of Law, Smith helped draft a Model Aid-in-Dying Act that provided for childrens lives to be terminated either at their own request or, if under 6 years of age, by parental request. (24)

Barbara Coombs Lee was Measure 16s chief petitioner. At the time, she was a vice president for a large Oregon managed care program. After the laws passage, she took over the leadership of Compassion in Dying. (25) [Note: In early 2005, Compassion in Dying merged with the Hemlock Society. The combined organization is now called Compassion and Choices.]

Coombs Lees promotion of assisted suicide and euthanasia began prior to her involvement with the Death with Dignity Act. As a legislative aide to Oregon Senator Frank Roberts in 1991, she worked on Senate Bill 114 that would have permitted euthanasia on request of a patient and, if the patient was not competent, a designated representative would have been authorized to request the patients death. (26)

Upon passage of the Oregon law in 1994, many assisted-suicide supporters were certain that other states would immediately fall in line. However, that did not occur. Between 1994 and mid-2006, assisted-suicide measures were introduced in state after state.(27) Each and every proposal failed. All of the proposals were assisted-suicide-only bills and, with one exception, (28) every one was virtually identical to the Oregon law.

Among supporters of assisted suicide and euthanasia, though, the Oregon law is seen as the model for success and is referred to in debates about assisted suicide throughout the world. For that reason, a careful examination of the Oregon experience is vital to understanding the problems with legalized assisted suicide.

OREGON

Under Oregons law permitting physician-assisted suicide, the Oregon Department of Human Services (DHS) previously called the Oregon Health Division (OHD) is required to collect information, review a sample of cases and publish a yearly statistical report. (29)

However, due to major flaws in the law and the states reporting system, there is no way to know for sure how many or under what circumstances patients have died from physician-assisted suicide. Statistics from official reports are particularly questionable and have left some observers skeptical about their validity.

For example, when a similar proposal was under consideration in the British Parliament, members of a House of Lords Committee traveled to Oregon seeking information regarding Oregons law for use in their deliberations. The public and press were not present during the closed-door hearings. However, the House of Lords published the committees proceedings in three lengthy volumes, which included the exact wording of questions and answers.

After hearing witnesses claim that there have been no complications associated with more than 200 assisted-suicide deaths, committee member Lord McColl of Dulwich, a surgeon, said, If any surgeon or physician had told me that he did 200 procedures without any complications, I knew that he possibly needed counseling and had no insight. We come here and I am told there are no complications. There is something strange going on. (30)

The following includes statistical data from official reports and other published information dealing with troubling aspects of the practice of assisted suicide in Oregon. Statements from the 744-page second volume of the House of Lords committee proceedings are also included. None of the included statements from the committee hearings were made by opponents of Oregons law.

OFFICIAL REPORTS

Assisted-suicide deaths reported during the first eight years

Official Reports: 246Actual Number: Unknown

The latest annual report indicates that reported assisted-suicide deaths have increased by more than 230% since the first year of legal assisted suicide in Oregon. (31) The numbers, however, could be far greater. From the time the law went into effect, Oregon officials in charge of formulating annual reports have conceded theres no way to know if additional deaths went unreported because Oregon DHS has no regulatory authority or resources to ensure compliance with the law. (32)

The DHS has to rely on the word of doctors who prescribe the lethal drugs. (33) Referring to physicians reports, the reporting division admitted: For that matter the entire account [received from a prescribing doctor] could have been a cock-and-bull story. We assume, however, that physicians were their usual careful and accurate selves. (34)

The Death with Dignity law contains no penalties for doctors who do not report prescribing lethal doses for the purpose of suicide.

Complications occurring during assisted suicide

Official Reports: 13 (12 instances of vomiting & one patient who did not die fromlethal dose.)

Actual number: Unknown

Prescribing doctors may not know about all complications since, over the course of eight years, physicians who prescribed the lethal drugs for assisted suicide were present at only 19.5% of reported deaths. (35) Information they provide might come from secondhand accounts of those present at the deaths (36) or may be based on guesswork.

When asked if there is any systematic way of finding out and recording complications, Dr. Katrina Hedberg who was a lead author of most of Oregons official reports said, Not other than asking physicians. (37) She acknowledged that after they write the prescription, the physician may not keep track of the patient. (38) Dr. Melvin Kohn, a lead author of the eighth annual report, noted that, in every case that they hear about, it is the self-report, if you will, of the physician involved. (39)

Complications contained in news reports are not included in official reports

Patrick Matheny received his lethal prescription from Oregon Health Science University via Federal Express. He had difficulty when he tried to take the drugs four months later. His brother-in-law, Joe Hayes, said he had to help Matheny die. According to Hayes, It doesnt go smoothly for everyone. For Pat it was a huge problem. It would have not worked without help. (40) The annual report did not make note of this situation.

Speaking at Portland Community College, pro-assisted-suicide attorney Cynthia Barrett described a botched assisted suicide. The man was at home. There was no doctor there, she said. After he took it [the lethal dose], he began to have some physical symptoms. The symptoms were hard for his wife to handle. Well, she called 911. The guy ended up being taken by 911 to a local Portland hospital. Revived. In the middle of it. And taken to a local nursing facility. I dont know if he went back home. He died shortly someperiod of time after that. (41)

Overdoses of barbiturates are known to cause vomiting as a person begins to lose consciousness. The patient then inhales the vomit. In other cases, panic, feelings of terror and assaultive behavior can occur from the drug-induced confusion. (42) But Barrett would not say exactly which symptoms had taken place in this instance. She has refused any further discussion of the case.

Complications are not investigated

David Prueitt took the prescribed lethal dose in the presence of his family and members of Compassion & Choices. After being unconscious for 65 hours, he awoke. It was only after his family told the media about the botched assisted suicide that Compassion & Choices publicly acknowledged the case. (43) DHS issued a release saying it has no authority to investigate individual Death with Dignity cases. (44)

Referring to DHSs ability to look into complications, Dr. Hedberg explained that we are not given the resources to investigate and not only do we not have the resources to do it, but we do not have any legal authority to insert ourselves. (45)

David Hopkins, Data Analyst for the Eighth Annual Report, said, We do not report to the Board of Medical Examiners if complications occur; no, it is not required by law and it is not part of our duty. (46)

Jim Kronenberg, the Oregon Medical Associations (OMA) Chief Operating Officer, explained that the way the law is set up there is really no way to determine that [complications occurred] unless there is some kind of disaster. [P]ersonally I have never had a report where there was a true disaster, he said. Certainly that does not mean that you should infer there has not been, I just do not know. (47)

In the Netherlands, assisted-suicide complications and problems are not uncommon. One Dutch study found that, because of problems or complications, doctors in the Netherlands felt compelled to intervene (by giving a lethal injection) in 18% of cases.(48)

This led Dr. Sherwin Nuland of Yale University School of Medicine to question the credibility of Oregons lack of reported complications. Nuland, who favors physician-assisted suicide, noted that the Dutch have had years of practice to learn ways to overcome complications, yet complications are still reported. The Dutch findings seem more credible [than the Oregon reports], he wrote. (49)

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