Euthanasia: Euthanasia is the intentional killing by act or omission of a dependent human being for his or her alleged benefit.
Voluntary euthanasia: When the person who is killed has requested to be killed.
Non-voluntary: When the person who is killed made no request and gave no consent.
Involuntary euthanasia: When the person who is killed made an expressed wish to the contrary.
Assisted suicide: Someone provides an individual with the information, guidance, and means to take his or her own life with the intention that they will be used for this purpose. When it is a doctor who helps another person to kill themselves it is called “physician assisted suicide.”
Euthanasia By Action: Intentionally causing a person’s death by performing an action such as by giving a lethal injection.
Euthanasia By Omission: Intentionally causing death by not providing necessary and ordinary (usual and customary) care or food and water.
Questions and Answers about “Artificial Feeding”
The following is a discussion of the ethical — not the legal – considerations surrounding the topic of “artificial feeding” which is the most common ethical dilemma facing patients and their families today:
Since the 1980s, a lot has been said about the provision of food and fluids by “artificial means.” Originally the debate centered on court cases involving people who were classified as being comatose or in a persistent vegetative state (PVS) and who were receiving food and fluids by means of a feeding tube. Over the years, the meaning of “artificial feeding” has expanded and the number of categories of people from whom it is removed has grown.
Currently, cases coming before the courts involve people whom all parties acknowledge are not in a coma or PVS. Two such cases are those involving Michael Martin in Michigan and Robert Wendland in California. (1)
It’s important to recognize that we only hear about the cases that are brought before the courts when there is disagreement among family members or with health care providers. The reality is that decisions are being made every day to withhold food and fluids from non-dying patients.
The following are the questions asked most frequently about what has become known as “artificial feeding:”
Q: What is “artificial feeding”?
A: “Artificial feeding” is not a medical term. It’s a catch phrase that is generally thought to mean food and fluids provided by means of tube. In fact, in court cases, expert witnesses have testified that “artificial feeding” can include spoon feeding and that the food brought on a tray to a patient in a convalescent home can be considered “medical treatment” because the patient’s diet must receive physician approval. (2)
Q: Why prolong the lives of people who are severely brain damaged or are in a persistent vegetative state (PVS) or coma? Wouldn’t it be better to let them die a peaceful death?
A: First, let’s look at what is meant by PVS and coma. News accounts often confuse the two terms, sometimes using them interchangeably. They’re not the same. PVS is a term used to describe someone who is awake but unaware. The person has no apparent ability to understand or respond. Coma, on the other hand, is a sleeplike state from which the person cannot be wakened. Often these terms are used inaccurately.
A person who is in a coma or persistent vegetative state can’t say she’s thirsty. Similarly, a severely brain damaged person may be unable to express himself. Such individuals won’t even understand what’s happening. They’ll simply feel thirst and, within five to 21 days, they will die of dehydration. (Although it’s often said that a person dies of starvation and dehydration. Actually, when food and fluids are removed, the person dies from dehydration, not starvation.)
Removing their food and water isn’t “letting them die.” It’s making them die. Nor is this type of death “putting them out of their misery,” as some would say. Instead it’s putting them into misery – the misery of dying in an excruciating manner. How could dying of thirst possibly be considered a peaceful death?
Q: Aren’t painkillers given to prevent suffering during the dehydration?
A: Yes. This is often done. The fact remains, however, that the pain is caused by denying food and water to the person.
Q: Is taking away artificial feeding the same as euthanasia?
A: Taking away food and water, no matter how they are provided, is euthanasia if the purpose of doing so is to cause death.
Q: Does this mean that food and water must always be provided to every patient?
A: No. There are situations where giving food and water, whether by mouth or by tube feeding, would be futile or excessively burdensome. For example, patients who are very close to death may be in such a condition that fluids would cause a great deal of discomfort or may not be assimilated. Food may not be digested as the body begins “shutting down” during the dying process.
There comes a time, when a person is truly imminently dying — within hours or a few days, not within weeks or months — that a simple wiping of the brow and moistening the lips with ice chips may be all that need be done. No one is saying that food and fluids should be forced on such a person. This would be burdensome and futile.
Additionally, in extremely rare case, where the very means of providing food and fluids would be excessively burdensome and/or painful, a decision to withhold feeding in such a situation would be made to prevent subjecting the patient to the means itself.
But, practically speaking, decisions to deny food and fluids do not center around “burdensome” means. The decisions, instead, focus on people who are considered “burdens.”
The real questions are, “Do we continue to feed people who are disabled, demented, abandoned, or unwanted? Or do we end their lives by the universally effective deadly measure of stopping food and water?”
Removing food and water because the person is considered burdensome or “better off dead” is a way of killing the person – directly, intentionally, and cruelly.
Q: Isn’t tube feeding an extraordinary means of keeping people alive with new and expensive medical technology?
A: Tube feeding is neither new nor expensive. It’s been in use for more than 100 years. Two articles, published in the 1896 “Transactions of the Kentucky Medical Society,” described the ease with which feeding by gastrostomy tube (g-tube) was being accomplished at that time. (3)
The food placed in a feeding tube is not expensive. A full day’s supply generally averages about $8. Nor is it exotic. Next time you’re shopping in your neighborhood supermarket, pick up a 32-oz. can of Ensure in the liquid diet food section.
Pick any flavor. It comes in chocolate, strawberry or vanilla. Read the label on the back, and you’ll find that you can drink it as a fully balanced meal or that it can be used for tube feeding. If it’s a quick meal for you and me, how can it be “extraordinary medical treatment” when it’s placed in a feeding tube?
It seems doubtful that those who contend that food and fluids become “treatment” if taken by tube would tolerate others calling penicillin or anti-depressants “food” when taken by mouth.
Tube feeding isn’t as rare as some may think. A 1987 governmental report found that at least 848,100 people per year receive food by means of a tube in hospitals, nursing homes, or their own homes. (4)
Q: When someone can’t swallow, isn’t it better to stop artificial means to prolong life?
A: No. Some who receive nourishment by tube do so because they can’t swallow, but this doesn’t affect their ability to hold down jobs or, for that matter, to take unaccompanied vacations to faraway places.
In most cases, however, those who are tube fed are dependent on others for much or all of their care. In long-term care facilities, people who can chew and swallow if spoon-fed are often placed on tube feeding for the convenience of caregivers. After months of tube feeding, the ability to swallow can become atrophied. Ironically, this then presents the opportunity or excuse to remove food and water, because it is provided by “artificial means.”
Q: Isn’t insertion of a g-tube a very risky surgical procedure?
A: No, it isn’t. In fact, a case that took place a few years ago indicates that the degree of risk may depend very much on the social status of the patient involved.
Ninety-two-year-old Mary Hier had lived in mental hospitals for more than half her life. She thought she was the Queen of England. She wasn’t terminally ill, but because of a throat problem she had received food by means of a g-tube for more than 10 years.
When that tube became dislodged, the health facility asked permission from her court-appointed guardian to reinsert the tube. He refused, and the case went to court. The court, agreeing with the guardian, said that implanting the tube was a “highly intrusive and highly risky procedure.” (5)
Mary Hier’s case got into a Boston newspaper. The paper reported on a similar case at about the same time. The article reported on a 94-year-old woman who was doing well following “minor surgery to correct a nutritional problem.” (6) The surgery was performed on an outpatient basis under local anesthesia.
The woman’s name? Rose Kennedy.
The minor surgery? Insertion of a g-tube.
For Mary Hier — elderly, demented, and without family — the same surgery was described as “highly invasive and highly risky.” For Rose Kennedy — mother of a president and US senators — it was a “minor medical procedure.”
Draw your own conclusions about the degree of risk.
Fortunately for Mary Hier, last minute intervention resulted in her g-tube being reinserted. She continued to live comfortably for many years — happily signing her name “Mary Hier, Queen of England.”
Q: Where is all of this leading?
A: In 1983, reflecting on the possible outcome of the food and fluids debate which was just getting underway, Daniel Callahan, who was then the director of the Hastings Center, wrote that “…a denial of nutrition, may, in the long run, become the only effective way to make certain that a large number of biologically tenacious patients actually die.” He further predicted, “Given the increasingly large pool of superannuated, chronically ill, physically marginal elderly, it could well become the nontreatment of choice.” He noted, however, that there was still a “deep-seated revulsion” to withholding or withdrawing food from patients. (7)
Before answering further about where this is leading, it’s necessary to point out that many people have not thought carefully about the implications of withholding food and water from non-dying patients. Furthermore, there has been a great deal of confusion since many people assume that if something is legal it’s ethical. Thus, it’s important to recognize that not every person who has indicated approval for removing food and fluids is knowingly promoting euthanasia. Nonetheless, there’s no question that removing food and fluids has been intended by euthanasia leaders to be a stepping stone to euthanasia by means of lethal injection.
At a 1984 international conference of euthanasia leaders, one speaker explained that once people see how painful death by starvation and dehydration is, then, “in the patient’s best interest,” they will accept the lethal injection. (8)
In 1996, Choice in Dying began to list dehydration in a guide to end-of-life options. The organization noted that among the legal ways to end life was to do without food and water: “A tray of food is considered treatment” and thus can be refused. (9)
The food and fluids debate has also put a whole new twist on the definition of “terminal illness.”
Speaking at the 1998 Hemlock conference, Connie Holden, the nurse-administrator of a Colorado hospice, explained her involvement with the dehydration deaths of three nonterminally-ill patients.
One was an elderly woman who was so physically healthy that she hadn’t seen a doctor for years. She had what Holden referred to as “the dwindles” — the aging process — and had decided to stop eating and drinking so she would die The woman — not dying, not even ill — was admitted to the hospice so that she could receive any pain control that might become necessary as she starved and dehydrated to death.
Asked how this woman or the other patients would be considered “terminally ill,” Holden stated, “The definition of terminally ill, of course, is six months or less and we knew that all three of these patients would die in six months or less if they stopped eating.” Thus, the patients were deemed to be terminally ill. (10)
Using this new interpretation, a law permitting assisted suicide or euthanasia for persons who are terminally ill could apply to virtually anyone if that person is no longer receiving food and water.
1. In both the Martin and Wendland cases, the men were severely disabled but were able to do simple tasks. Their wives sought to remove food and fluids but, because other family members objected, the cases reached the courts.
Mary Martin lost her quest to remove her husband’s food and fluids (In re Martin, 538 N.W. 2d 399 (Mich. 1995)).
Addressing the “Families on the Frontier of Dying” conference in Philadelphia on May 21 1998, Mrs. Martin said, “He [Michael] is not PVS. He is conscious, awake….” Referring to the fact that her husband was injured in a car-train accident, she asked, “Do you know why car insurance rates are so high?” “Because people like Mike are being forced to stay alive. In his condition now he could probably outlive me and our children. He’s in well enough health, thanks to the feeding tube, he could outlive us all. And for what? Because his mother and sister aren’t willing to let him go.” She further stated, “He does nothing but smile…. Patients like this can smile and nod their head….They could be the organ donors who are so desperately needed.”
Rose Wendland also lost her quest to remove food and fluids from her husband Robert. Conservatorship of Wendland26 Cal 4th 519; 28 P.3d 151 (2001).
2. Cruzan v. Harmon, 760 S.W. 2d 408 (Mo. 1988) (no. CV 384-9P). Transcript, p. 163 and 228; McConnell v. Beverly Enterprises, 209 Conn. 692, 553 A. 2d 596, (1988)(No. 0293888), Transcript, p. 56; Testimony of Eric Cassell, M.D., before the Committee on Finance, United States Senate, May 5, 1994, p. 4.
3. McMurtry, “Modern Gastrostomy for Stricture of the Esophagus, with Report of a Case,” and Coomes, “Gastrostomy, with Report of a Case,” Transactions of the Kentucky Medical Society (1896).
4. Office of Technology Assessment, U.S. Congress, Life Sustaining Technologies and the Elderly, (1987), p. 294.
5. In re Hier, 18 Mass. App. 200, 464 N.E. 2d 959, 964 (1984).
6. “Rose Kennedy ‘doing well’ after surgery,” Boston Globe, July 29, 1984, p. 35.
7. Daniel Callahan, “On Feeding the Dying,” Hastings Center Report, October 1983, p. 22.
8. Helga Kuhse, Ph.D. of Monash University at the World Federation of Right to Die Societies’ fifth biennial conference held September 20-23, 1984 in Nice, France as quoted in R. Marker, Deadly Compassion, (Wm. Morrow and Co., 1993) p. 94.
9. Lori Montgomery, “The options – legal and not,” Detroit Free Press, Dec. 26, 1996.
10. Connie Holden, RN at the 10th National Hemlock Society Conference, June 7, 1998 (transcript of Tapes SU1 and SU2).
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.
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, Holland’s 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.
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 Oregon’s law permitting assisted suicide, failed to gain approval in the British Parliament. The bill’s 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 Association’s ethics committee who is considered one of England’s 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 patient’s consent. (4) Doyal’s 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 Doyal’s 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…. ‘I’m convinced that if we meet again somewhere in heaven,’ her father said, ‘she’ll tell us we reached the most perfect solution.’”(5)
The report about the six-month-old Dutch child’s 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, “I’m certainly pro-life. But I’m also a human being. I think when there is extreme, unbearable suffering, then there can be extreme relief.” (6)
Gone was the previous year’s 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.
Oregon’s law does not require family members to know that a loved one is planning to commit suicide with a doctor’s 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?
UCLA’s 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 California’s legislature was considering an assisted-suicide bill that was virtually identical to Oregon’s 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 (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 England’s 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 California’s 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 Oregon’s 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 couldn’t 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 state’s 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.
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 one’s autonomy depend upon a doctor’s diagnosis (or misdiagnosis) of a terminal illness? If a person is not terminally ill, but is suffering – whether physically, psychologically or emotionally – why isn’t 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?
Isn’t 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 Oregon’s 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 bill’s 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)
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 Oregon’s 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 Oregon’s law, had served as a special counsel to the political action group Oregon Right to Die (ORD). Smith had been the National Hemlock Society’s legal advisor after her graduation from law school in 1989 and had been a top aide to Hemlock’s 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 children’s 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 16’s chief petitioner. At the time, she was a vice president for a large Oregon managed care program. After the law’s 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 Lee’s 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 patient’s 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.
Under Oregon’s 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 state’s 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 Oregon’s 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 committee’s 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 Oregon’s law.
Assisted-suicide deaths reported during the first eight years
Official Reports: 246
Actual 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 “there’s 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 from
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 Oregon’s 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 doesn’t 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 don’t know if he went back home. He died shortly – some…period 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 DHS’s 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 Oregon’s 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)
Assisted-suicide deaths of patients with impaired judgment
Official Reports: 0 (Official reports do not contain this category.)
Actual number: Unknown
Under the assisted-suicide law, depressed or mentally ill patients can receive assisted suicide if they do not have “impaired judgment.” (50) Concerning the decision to refer for a psychological evaluation, Dr. Kohn said, “According to the law, it’s up to the docs’ discretion.” (51) During the last year for which reports are available, only 5% of patients were referred for a psychological evaluation or counseling before receiving a prescription for assisted suicide. (52)
Even if a patient is competent when the prescription is written, that may not be the case when the lethal drugs are taken. Dr. Hedberg acknowledged that there is no assessment of patients after the prescribing is completed. “Our job is to make sure that all the steps happened up to the point the prescription was written,” (53) she said. “In fact, after they write the prescription, the physician may not keep track of that patient…. [T]he law itself only provides for writing the prescription, not what happens afterwards.” (54)
Kate Cheney, 85, died of assisted suicide under Oregon’s law even though she reportedly was suffering from early dementia. Her own physician declined to provide the lethal prescription. When counseling to determine her capacity was sought, a psychiatrist determined that she was not eligible for assisted suicide since she was not explicitly seeking it, and her daughter seemed to be coaching her to do so. She was then taken to a psychologist who determined that she was competent, but possibly under the influence of her daughter who was “somewhat coercive.” Finally, a managed care ethicist who was overseeing her case determined that she was qualified for assisted suicide and the drugs were prescribed. (55)
Assisted-suicide deaths of depressed patients
Official Reports: 0 (Official reports do not contain this category.)
Actual number: Unknown
The first known assisted-suicide death under the Oregon law was that of a woman in her mid-eighties who had been battling breast cancer for twenty-two years. Two doctors, including her own physician who believed that her request was due to depression, refused to prescribe the lethal drugs. Then Compassion in Dying (CID), now called Compassion and Choices, became involved. Dr. Peter Goodwin, who was then the medical director of CID, (56) determined that she was an “appropriate candidate” for death and referred her to a doctor who provided the lethal prescription. In an audiotape, made two days before her death and played at a CID press conference, the woman said, “I will be relieved of all the stress I have.” (57)
In 2001, Dr. Peter Reagan, an assisted-suicide advocate affiliated with CID, gave Michael Freeland a prescription for lethal drugs under Oregon’s law. Freeland, 64, had a 43-year history of acute depression and suicide attempts. However, when Freeland and his daughter went to see Dr. Reagan about arranging a legal assisted suicide, Dr. Reagan said he didn’t think that a psychiatric consultation was “necessary.” (58)
Assisted-suicide requests based on financial concerns
Official Reports: 7
Actual number: Unknown
Data about reasons for requests is based on prescribing doctors’ understanding of patients’ motivations. It is possible that financial concerns were much greater than reported. According to official reports, 36.5% of patients whose deaths were reported were on Medicare (for senior citizens) or Medicaid (for the poor) and an additional 1% had no insurance. (59)
After the second annual report, official reports have not differentiated between Medicare and Medicaid patients dying from assisted suicide.
Patients who received lethal dose more than 6 months before death
Official Reports: 2 or 4 (After the 2nd year, official reports stopped including this category.)
Actual number: Unknown
Lethal prescriptions under Oregon’s law are supposed to be limited to patients who have a life expectancy of six months or less. (60)
One patient was still alive 17 months after the lethal drugs were prescribed, (61) and, during the first two years of the law’s implementation, at least one lethal dose was prescribed more than eight months before the patient took it. (62) The DHS is not authorized to investigate how physicians determine their patients’ diagnoses or life expectancies. (63)
According to the OMA’s Chief Operating Officer, Jim Kronenberg, most physicians have told him that trying to predict that a patient has less than six months to live “is a stretch.” “Two hours, a day, yes, but six months is difficult to do,” he explained. (64)
Dr. Peter Rasmussen, an advisory board member of the Oregon chapter of C & C, (65) has been involved in Oregon assisted-suicide deaths numbering in double digits. He said life expectancy predictions for a person entering the final phase of life are inaccurate. He dismissed this as unimportant, saying, “Admittedly, we are inaccurate in prognosticating the time of death under those circumstances, we can easily be 100 percent off, but I do not think that is a problem. If we say a patient has six months to live and we are off by 100 percent and it is really three months or even twelve months, I do not think the patient is harmed in any way….” (66)
Shortest length of time reported for prescribing doctor-patient relationship
Official Reports: Less than one week
Actual Number: Unknown
Oregon’s assisted-suicide law requires that at least two weeks elapse between the patient’s first and last requests for lethal drugs. (67) Yet, for the third through the eighth years, the doctor-patient relationship in some reported assisted-suicide cases was under one week. (68) Thus, official reports indicate that either some physicians are not complying with the two-week requirement or they step in to write an assisted-suicide prescription after other physicians refused.
First physician asked agreed to write prescription
Official Reports: 27 (41%) in the first three years. (After the 3rd year, official reports stopped including this category.)
Actual number: Unknown
A New England Journal of Medicine article noted that “many patients who sought assistance with suicide had to ask more than one physician for a prescription for lethal medication.” (69) Patients or their families can “doctor shop” until a willing physician is found.
There is no way to know, however, why the previous physicians refused to lethally prescribe (i.e., the patient was not terminally ill, had impaired judgment, etc.) since non-prescribing physicians are not interviewed for the official state reports. The only physicians interviewed for official reports are those who actually wrote lethal drug prescriptions for patients. (70)
OTHER TROUBLING ASPECTS of ASSISTED SUICIDE in OREGON
No way to track the drugs once they are received
“[W]e do not have a way to track if there was a big bottle [of lethal drugs] sitting in somebody’s medicine cabinet and they died whether or not somebody else chose to use
it,” explained Dr. Hedberg. (71)
Self-administration is very broadly interpreted
Dr. Rasmussen explained that, in one case, he opened 90 capsules – a lethal dose – of barbiturates and poured the white powder into a bowl of chocolate pudding. He gave the mixture to the woman’s son who spooned the mixture into his mother’s mouth. Another son gave her sips of water to wash the solution down. The woman died twelve hours later. (72) (Because the woman performed the last action – swallowing – that led to her death, the act was technically assisted suicide, not euthanasia.)
According to Sue Davidson of the Oregon Nurses Association (ONA), a 2002 survey found that nurses were very actively involved in the process and that “some indicated that they had assisted [patients] in the taking of it [the lethal dose].” (73)
Lethal drugs do not need to be taken orally
Barbara Glidewell who educates Oregon Health & Science University (OHSU) patients and their families about “the need for a dying plan and to rehearse the plan” (74) said that patients who cannot swallow would “need to have an NG tube or G tube placement.” (75) Then, they could “express the medication through a large bore syringe that would go into their G tube.” (76)
Oregon’s 2005 Guidebook for Health Care Professionals states, “It remains unclear whether the Oregon Death with Dignity Act allows an attending physician to prescribe an injectable drug for the patient to self-administer for the purpose of ending life.” (77)
Discussing a case in which a man said he helped his brother-in-law take the prescribed drugs, Dr. Hedberg said, “[W]e do not know exactly how he helped this person swallow, whether it was putting a feed tube down or whatever, but he was not prosecuted….” (78)
“Safeguards” are disregarded but no one is disciplined
Referring to assisted-suicide cases that were in violation of the law – where only one of the required two witnesses signed the request or where doctors prescribed the lethal drugs without waiting for 15 days as the law requires – Dr. Hedberg said, “[T]here have been a number over the years.” (79)
Kathleen Haley, Executive Director of the Oregon Board of Medical Examiners, said four such cases, one involving multiple patients, (80) were reported to the Board of Medical Examiners. This resulted in issuance of two “letters of concern” that are considered “letters of advice.” She explained that the letters “are not public and they are not official disciplinary actions.” (81)
Records used in annual reports are destroyed
Dr. Hedberg said, “After we issue the annual report, we destroy the records.” (82) Thus, there is no way to track if the same physicians have violated the law during more than one year.
HMOs are facilitating assisted suicide
The unwillingness of many physicians to write lethal prescriptions led one HMO to issue a plea for physicians to facilitate assisted suicide.
On August 6, 2002, Administrator Robert Richardson, MD, of Oregon’s Kaiser Permanente sent an e-mail to doctors affiliated with Kaiser, asking doctors to contact him if they were willing to act as the “attending physician” for patients requesting assisted suicide. According to the message, the HMO needed more willing physicians because “Recently our ethics service had a situation where no attending MD could be found to assist an eligible member in implementing the law for three weeks….” (83)
Gregory Hamilton, MD, a Portland psychiatrist pointed out that the Kaiser message caused concern for several reasons. “This is what we’ve been worried about: Assisted suicide would be administered through HMOs and by organizations with a financial stake in providing the cheapest care possible,” he said. Furthermore, despite promoters’ claims that assisted suicide would be strictly between patients and their long time, trusted doctors, the overt recruitment of physicians to prescribe the lethal drugs indicated that those claims were not accurate. Instead, “if someone wants assisted suicide, they go to an assisted-suicide doctor – not their regular doctor.” (84)
Kaiser’s Northwest Regional Medical Director Allan Weiland, MD, called Dr. Hamilton’s comments “ludicrous and insulting.” (85) But it appears that Dr. Hamilton was correct, as the involvement of an assisted-suicide advocacy group indicates.
Assisted-suicide advocacy group facilitates most of Oregon’s assisted suicides
If a physician opposes assisted suicide or believes the patient does not qualify under the law, C & C or its predecessor organizations has often arranged the death.
Dr. Peter Goodwin, the group’s former medical director said that about 75% of those who died using Oregon’s assisted-suicide law through the end of 2002 did so with the organization’s assistance. (86)
During the 2003 calendar year, the organization was involved in 79% of assisted-suicide deaths. (87)
According to Dr. Elizabeth Goy of OHSU, Compassion in Dying (now called Compassion and Choices (88)) sees “almost 90 percent of requesting Oregonians….” (89)
Barbara Farmer of the Visiting Nurses Association said, if a person’s own doctor doesn’t want to participate, “we have advised them to work with Compassion in Dying….” (90)
The state pays for assisted-suicide drugs for the poor
Oregon’s Medicaid program pays for assisted suicide (91) but not for many other medical interventions that patients need and want.
Ann Jackson, Executive Director and primary spokesperson of the Oregon Hospice Association, explained, “The State of Oregon, under the Oregon Health Plan, will buy the medications…. The drugs are very inexpensive.” (92)
No family notification required before a doctor helps a loved one commit suicide
Family notification is only recommended, but not required, under Oregon’s assisted-suicide law. (93) The first time that a family learns that a loved one was considering suicide could be after the death has occurred.
Prescribing doctors decide what “residency” means
Under Oregon’s law, a patient must be a resident of Oregon. Residence can be demonstrated by means that include, but are not limited to, a driver’s license or a voter registration. (94)
According to Dr. Hedberg, “It is up to the doctor to decide” whether the person is a resident. There is no time element during which one must have lived in Oregon. “If somebody really wanted to participate, they could move from their home state,” she said. “I do not think it happens very much….” (95)
Pain control has become increasingly inadequate in Oregon
As of 2004, nurses reported that the inadequacy of meeting patients’ pain needs had increased “up to 50 percent even though the emphasis on pain management has remained the same or is slightly more vigorous…. Most of the small hospitals in the state do not have pain consultation teams at all,” said a spokesperson for the Oregon Nurses Association. (96)
As other states and countries consider Oregon-type laws, it remains to be seen whether decision-makers will rely on the deceptively rosy picture painted by assisted-suicide supporters – or on the reality of the Oregon experience.
OPPOSING EUTHANASIA & ASSISTED SUICIDE EFFORTS
It is important to be concerned about assisted suicide and euthanasia. But concern alone doesn’t protect anyone. Tragically, some people worry about the dangers and assume that either there is nothing they can do or that they don’t have the time to get involved in effectively opposing those seeking death on demand.
There is, however, much that can be done by everyone, no matter what one’s age, occupation or financial ability may be. The following are some concrete suggestions.
As already discussed, assisted-suicide laws have been and will continue to be proposed throughout the country, using two prime avenues – ballot initiatives and legislative proposals.
No matter which of those two avenues may be taken, effective advocacy of one’s position can include the following:
Be informed. Nothing destroys credibility more than having the facts wrong. Be able to cite your source for any information.
Keep to the issue. There are many other “hot button” issues that one may feel passionate about. But, when discussing assisted suicide, keep the focus on assisted suicide. Don’t be sidetracked to other issues. Don’t be tempted to compare assisted suicide to other issues.
Write letters to the editor of your local newspaper. Keep the letters short and to the point. (The “Letters to the Editor” section of any newspaper is one of the most-read sections, only behind the sports page and advice columns.)
Always ask yourself three questions:
1. Who am I trying to reach? Know your “audience.” Is it a neighbor, family member, legislator, large gathering or general reader of the local newspaper?
2. What am I trying to accomplish? Specifically, what is my one goal in saying or writing this?
3. Will what I am planning to say or write reach the person or persons I’m attempting to reach and will it accomplish what I’m trying to accomplish?
Recognize that your views are important. Your personal views, shared with clarity and respect, can have a far greater impact on those you know than anything an outside “expert” may say.
Become involved. Be active in neighborhood, community, professional, church and/or political activities if possible. If you are already taking part in such activities, you will have far greater influence when speaking about assisted suicide because you will have established relationships. People will know you as a friend and colleague.
Don’t take anyone’s viewpoint for granted. When the issue is assisted suicide, one cannot predict another’s stance on the topic based on political or religious affiliations, nor can one’s view regarding assisted suicide be predicted based on a position related to other issues such as abortion, capital punishment, etc.
If an assisted-suicide measure is proposed in the state legislature, the best thing to do is to elect lawmakers who share your viewpoint about assisted suicide. This means finding out where candidates stand on the issue. If you are pleased with the position taken by a candidate, donate to the campaign or volunteer to work on the campaign, even if it is only to make a few phone calls on the candidate’s behalf.
Then, continue to maintain contact with your elected officials after they get into office. If you have established some type of relationship with your elected official or with his or her staff, it is far more likely that your voice will be heard when a really important issue comes up.
If an assisted-suicide measure is pending, don’t wait until it is almost time for a vote to contact your elected official. Generally, by the time a measure gets to a vote, minds are made up. This is not to say that testifying at hearings about a measure is useless, but it is far easier to change minds before that point.
Remember that short personal letters are far more effective than petitions or form letters. Some suggestions:
Keep letters short (ideally one page long). A multi-page, single spaced letter filled with underlining shouts, “Ignore me.” That type of letter may get a form letter in response, but it’s only effect will be to alert office staff to ignore the next letter or message from the sender.
Be accurate. Make sure you can back up everything you write.
Say “thank you.” Occasionally send a letter thanking your elected official for a particular position or vote that he/she has taken.
Be respectful but firm. Recognize that a lawmaker may, at first, favor a particular proposal that you know is dangerous. His or her intent may be good. But that good intent will not protect people from the sometimes deadly content of a measure. Gently point out the problems in the bill. Be clear, concise, brief, and respectful.
Use correct terminology. Remember the definitions of euthanasia and assisted suicide explained at the beginning of this report.
Note: The ITF is not a lobbying organization so it does not contact legislators seeking to influence their votes. However, the ITF does analyze pending assisted-suicide bills. A selected point from such an analysis can be used in a letter or message to a lawmaker. Remember, you – as someone who votes for the lawmaker – will have far more influence on an elected official than any outside organization or expert.
Voter initiative or referendum
If a proposal will be decided by a direct vote of the people, either through a referendum or an initiative, the voters – you, your friends, family, neighbors and colleagues – will be deciding whether the crime of assisted suicide will become a “medical treatment” in your state.
There are many effective ways to help others understand the danger of such a proposal. The following ideas are only a few such ways:
Before such a measure is actually scheduled for the ballot, begin to discuss assisted suicide with others.
If you are a member of a church, professional or civic organization, become involved in the program committee. If you have suggested other speakers who have been interesting, your suggestion to schedule a speaker who will discuss assisted suicide is more likely to be accepted. (You may even decide that you will offer to be the speaker for the topic.)
If you belong to an organization that frequently or occasionally adopts resolutions supporting or opposing pending legislation, draft a simple resolution supporting your position on assisted suicide. Line up support for it among others in the organization before proposing it. If your resolution passes, make certain that your organization issues a press release announcing the resolution.
Assisted suicide and euthanasia do, indeed, pose a great threat to families and to all of society. But, with the exception of Oregon, the Netherlands and Belgium, attempts to legalize them have been unsuccessful.
Unfortunately, there are other threats to vulnerable individuals. Those threats and the ways to protect oneself and one’s loved ones are addressed in Part II of this report.
My neighbor said she had to sign a Living Will when she went into the hospital. Is this true?
My mother needs nursing home care. When she started to fill out the paperwork, she was told she had to have an advance healthcare directive. Is that true?
I don’t need an advance directive. If I can’t make my own healthcare decisions, doesn’t my husband have the authority to do that?
If I’m in the hospital and I say I want to have a certain type of medical treatment, the hospital can’t deny it to me. Isn’t that right?
My son is in college. If he’s in an accident and can’t make medical decisions for himself, don’t I have the right to make those decisions?
Aren’t advance directives only necessary for people who are elderly, or very sick? (1)
Having the answer to these types of questions is important. Sometimes they can make the difference between life and death.
WHO MAKES MEDICAL DECISIONS?
If you are an adult reading this report, you have the right to make your own medical decisions. However, a few hours from now, if you decide to drive to the store and are in a serious car accident that leaves you temporarily or permanently unable to make those decisions, who will make them for you?
The answer to that will depend upon whether you have an advance healthcare directive. An advance directive is a document by which individuals make provisions for healthcare decisions in the event that, in the future, they are unable to make those decisions for themselves.
Decision-making for incapacitated individuals in the absence of an advance directive
Most people who have had personal experience dealing with health care for an incapacitated loved one have not had legal difficulties. That’s because, traditionally, healthcare providers have turned to the next of kin for decision-making. If there is agreement between the decision-maker and the doctor, and if there are no objections from other family members, everything generally goes smoothly. But, when there are disagreements, the results can be heart-wrenching.
Over and over, during the coverage of Terri Schiavo’s tragic death, television “experts” pronounced that, in cases like hers, when a person hasn’t left written directions about health care, all states have laws giving decision-making authority to the spouse. That sounds logical. But it’s not accurate.
Forty states and the District of Columbia do, indeed, have laws specifying who can make decisions for a patient who does not have an advance directive. In many – but not all – of those states, a spouse is designated as first in priority, followed by adult children, parents, and siblings. Other states have different procedures for deciding who will speak for a patient.
For example, in Tennessee, the supervising healthcare provider selects the decision-maker after giving consideration to the patient’s spouse, adult child, etc. (2) Similarly, in Indiana, any of those listed (spouse, parent, adult child, sibling, etc.) can decide for the incapacitated patient. (3) West Virginia gives the patient’s attending physician or an advanced nurse practitioner the right to select the decision-maker from the priority listing based on who the physician or nurse believes would be the best decision-maker. (4) Thus, if the doctor doesn’t agree with the patient’s spouse about what should or should not be done, that physician can designate someone else (a parent, sibling, or close friend of the patient) as the decision-maker. And then there’s Connecticut where decision-making is left to the physician in consultation with the next of kin. (5) Note that this means only that the next of kin must be consulted. It does not mean that there must be agreement. Essentially, the doctor calls the shots.
In California, a patient can orally designate someone to make decisions when treatment begins. That designation is in effect only during the course of treatment or illness, or during the stay in the healthcare institution where the designation is made, or for 60 days, whichever period is shorter. (6) That’s of little help, however, if the patient is not conscious when admitted for care.
Contrary to what was said so often during the Schiavo case, Florida law does not give first priority to a spouse, but to a court-appointed guardian. (7) A spouse is second to a guardian on Florida’s priority list. Although Michael Schiavo was Terri’s husband, his authority to remove her food and fluids came from his status as her court-appointed guardian.
Very soon after Terri’s brain injury, Michael petitioned the court to be named her guardian. If one of her parents or siblings had opposed Michael’s appointment at the time, or if any of them had sought to become her guardian, it is possible that one of them, rather than Michael, may have become Terri’s decision-maker. Whether a legal guardian is appointed and who that guardian is falls solely within the discretion of the court. Technically speaking, the court could even have appointed a guardian who was a complete stranger to make decisions for Terri.
Even if a person happens to live in a state in which the priority list gives authority to the person that they would prefer to have as a decision-maker, that priority list is only effective while in that state. Therefore, if a person is traveling in another state and is in a car accident there, leaving him temporarily or permanently unable to make medical decisions, the law in the state where the accident occurred will control.
Having an appropriate, carefully drafted advance directive (of the right type) is the only way to be certain that the person you want to make decisions for you will have the authority to protect you.
So how can people make certain that their values are respected, their lives protected, and their medical care is provided in a manner that they would choose?
Does it mean, as so many experts advise, that everyone should have a living will? If, and only if, the term, “living will,” is used generically to refer to an advance directive, the answer is “yes.” Frequently, lawyers and others who should know better call any type of advance directive a living will. But there are major differences between the types of advance directives. All living wills are advance directives, but not all advance directives are living wills.
The Living Will
The living will is the oldest type of advance directive. It is a signed, witnessed (or notarized) document, sometimes called a “declaration” or “directive.” Most living wills instruct an attending physician to withhold or withdraw medical interventions from its signer if he has a terminal condition or is in a permanent vegetative state. Since the document is so vague and the attending physician may be unfamiliar with the signer’s views and values, the document can be interpreted by the physician in a manner that was not intended by its signer. The Washington state case of Mary Jo Estep provides a stark example of this:
Mary Jo Estep, a very active retired schoolteacher, broke her hip. As part of her rehabilitation, she checked into a nursing home where, on admission, she signed a living will that stated she was not to receive extraordinary measures if she was dying. A few days before she was to go home, a tired nurse gave Ms. Estep the wrong medication – a mistake that could have been reversed easily at a local hospital emergency room. But that didn’t happen.
Instead, a doctor wrongly interpreted her living will to mean that Ms. Estep would not want treatment. By evening, Mary Jo Estep was in severe distress, with her blood pressure falling and pulse weakening. She died that night.
Legal experts in Washington later said that Ms. Estep’s case fell into the murky and untested realm of state law. Eventually, the case was resolved when the nursing home was fined $2,500 for a medication error. (8)
Mary Jo Estep’s case is unusual but not unique. Other cases of overly broad interpretations of living wills take place day after day. Yet, the problems with the living will should not deter people from having a different type of advance directive.
The Durable Power of Attorney for Health Care
The most protective and the most flexible type of advance directive is the durable power of attorney for health care. With this type of document you designate someone else to make healthcare decisions on your behalf if you are ever temporarily or permanently unable to make those decisions for yourself. The person you name is usually called an “agent,” although some states refer to this individual as an “attorney-in-fact,” a “healthcare proxy,” a “healthcare representative,” or a “healthcare surrogate.”
The person you name should be an adult who shares your views and values. This may, but need not be, a family member. It is also important that that person have the ability to be assertive when necessary. He or she should be a person who will be open to receiving necessary information and who will not be intimidated by a physician or ethics committee who may hold different views.
When you are able to make your own decisions, it is the responsibility of your healthcare providers to let you know your diagnosis, to give you information about possible treatments, as well as the risks and benefits associated with those treatments. Then, it is up to you to give or withhold consent based on that information. When you are not able to make your own decisions, the person you have named as your agent stands in your shoes. The doctor gives your agent the same information that would have been given to you and then, based on your prior discussions with your agent regarding your wishes and values, your agent gives or withholds consent for treatment on your behalf.
Because the durable power of attorney for health care is a legal document, it is important that you have one that is carefully drafted since every word takes on a legal meaning.
Some durable power of attorney for health care documents – even those that have been drafted by well-meaning organizations – contain blank lines where the signer is directed to “fill in your additional wishes.” This can present significant problems since the signer may write in words that have a legal meaning that differs from his or her intent. For example, a signer may write that she doesn’t want life-sustaining treatment “if death is imminent.” But what the signer meant by “imminent” might be death is going to occur in several days when, in fact, some states and some healthcare facilities interpret “imminent” as meaning up to one year! It is best to treat documents with fill-in-the- spaces or check boxes as well-meaning, but potentially problematic, documents.
It is not necessary, advisable, or even possible to write everything down about your wishes. There is no way any one of us can envision every possible condition, treatment, or situation we could face at any time. The most important thing is to maintain communication with your agent about your wishes as they change from time to time. Sometimes what we want now may be different than what we wanted five years ago.
Since requirements for a valid durable power of attorney for health care differ from state to state, your document must comply with the law in your state. Some states require that the documents be witnessed. Others require that they be notarized, while yet others may permit either. Some states require that specific warnings or notices be included in any preprinted forms. Others do not.
If your durable power of attorney for health care is valid when you sign it in your home state (the state where you are registered to vote or where your driver’s license is issued), it will be honored in other states when you are traveling.
Having a carefully drafted durable power of attorney for health care is the only way to be assured that someone who has your best interests in mind will be making your medical decisions if you are ever unable to make those decisions for yourself.
That’s why the ITF formulated the Protective Medical Decisions Document (PMDD).
The Protective Medical Decisions Document (PMDD)
The PMDD is a carefully drafted durable power of attorney for health care that has been designed to meet state requirements and to protect the signer.
It limits your agent’s authority in only one specific way, clearly stating that your agent does not have the authority to approve the direct and intentional ending of your life. For example, your agent may not authorize that you be given a lethal injection or an intentional drug overdose. Furthermore, your agent may not direct that you be denied food or fluids for the purpose of causing your death by starvation or dehydration.
That limitation not only protects you, but it also protects your agent from being pressured to authorize such actions.
The PMDD also has specific directions that are necessary in the current medical climate. For example, some healthcare providers have taken it upon themselves to put “do not resuscitate” (DNR) orders in place without the patient’s or agent’s authorization. Similarly, some healthcare providers, ethics committees and health facilities are making decisions about what is “appropriate,” “beneficial,” or “futile” based on institutional cost-containment or subjective quality-of-life decisions, not on the basis of what is best for or wanted by the patient.
The PMDD makes it clear that DNR orders and decisions about what is appropriate, beneficial or futile are to be made only by your agent and only if your are unable to make those decisions.
There is another aspect of the PMDD. As noted above, some states have very specific requirements for a durable power of attorney for health care. That is why the ITF distributes state-specific PMDDs for those states as well as a Multi-State PMDD for use in other jurisdictions. (9)
With the benefits of the durable power of attorney for health care in mind, questions remain: “Can a person be required to sign an advance directive?” “Who needs an advance directive?” “Must a healthcare provider honor all decisions made by a patient or a patient’s decision-maker?”
Can a person be required to sign an advance directive?
Federal regulations require every hospital or health program that receives any Medicare or Medicaid funds to inform patients, upon admission, of their rights regarding advance directives (10) and include documentation in the patient’s record whether or not the individual has an advance directive. (11)
As a result, some facilities, particularly nursing homes, erroneously tell patients that they must have an advance directive. And many facilities assume that they are required to offer patients an advance directive (usually a living will) to sign at the time of admission – when the patient is naturally under stress and is filling out a myriad of other paperwork. Sometimes patients who are anxious to complete admission procedures sign every paper placed before them. This could result in signing a living will without even realizing it until it’s too late. That’s why it is extremely important to carefully read documents before signing them.
Although it is certainly prudent to have an advance directive, both federal (12) and state laws (13) prohibit health facilities from requiring anyone to sign an advance directive.
If you or a loved one are told that an advance directive must be signed before care and treatment can be given, courteously but firmly explain that such a requirement is a violation of the law.
Recognizing that you cannot be compelled to have an advance directive is important. Knowing who needs an advance directive is equally important.
Who needs an advance directive?
Many people assume that only the sick and elderly need advance directives. But few people are aware that a carefully drafted durable power of attorney for health care is vital for every adult – young or old, healthy or sick, disabled or able-bodied.
For example, pregnant women assume that, if a medical emergency or a traffic accident leaves them temporarily unable to make their own medical decisions, their spouse or next of kin automatically has the authority to do so. As explained above, in the section titled “Decision-making for incapacitated individuals in the absence of an advance directive,” such assumptions are, at best, naive.
A pregnant woman who signs a durable power of attorney for health care like the PMDD is protected because she has given legal authority to someone she trusts, someone who knows and agrees with her views and values. The person she has designated can protect her life and that of her unborn baby during any time she is not capable of making medical decisions. The document would remain in effect even after the birth of her child, unless she revokes it.
Planning in advance for a new baby includes not only buying a crib, diapers and all of the other necessities, but also a protective durable power of attorney for health care for the expectant mother.
Similarly, parents of college students take it for granted that, if they are paying for their child’s medical care, they always have the right to make medical decisions for a son or daughter who is temporarily or permanently unable to do so.
But it is possible that, in the absence of an advance directive, parents of an ill or injured college student may not even be able to obtain basic information about their child’s condition. Ever since the federal Health Insurance Portability and Accountability Act (HIPAA) went into effect, some health facilities have refused to provide information to anyone – even family members – about a hospitalized adult (anyone over 18 years of age) unless the patient has given written consent.
However, the person who is designated in a durable power of attorney for health care does have the right to such information.
Young adults can designate a parent to make medical decisions so that, in the event of a sports injury, illness or accident, someone who knows and loves them will have the authority to protect their lives and well being. That’s why a protective durable power of attorney for health care like the PMDD should be one of the necessities of dorm life.
People have fire insurance even though their houses may never burn down. Likewise, competent adults should have a protective advance directive even though they may never be unable to make healthcare decisions for themselves.
Must healthcare providers honor all decisions made by a patient or a patient’s agent?
No. A healthcare provider or organization may decline to carry out healthcare decisions made by a patient or a patient’s designated agent if the provider conscientiously objects to such care or treatment. However, federal law requires that the patient or the patient’s decision-maker be provided with written policies at the time of admission of any limitations on carrying out such decisions, including the range of medical conditions or procedures affected by the conscience objection. Additionally, the notification must cite state law that relates to permitting those limitations. (14)
On occasion, healthcare providers implement what have become known as “futile care” policies. Under such policies, the provider may determine that a particular treatment is not appropriate for a patient.
There would not be a problem if such policies addressed treatments that were physiologically futile. (e.g., If a patient decides that her left arm should be amputated to improve her eyesight, the decision would be physiologically futile.) But, with increasing frequency, futile care policies are being applied to patient’s whose very lives are considered futile. (15)
Additionally, there have been cases where healthcare staff has made mistakes, necessitating treatment that the facility subsequently declares to be futile treatment.
For example, in a current Texas case, a young woman who had undergone a Caesarean section developed complications. According to court papers filed on her behalf, a tracheal tube was inserted to allow her to breath. The breathing tube became dislodged, interrupting her oxygen intake, but nurses failed to notice this until she was unresponsive and had sustained brain damage.
Two weeks later, the hospital futility review committee decided that life-sustaining treatment was futile and informed the family that it would be removed in ten days.
The family’s attorney told the Houston Chronicle, “This care raises questions of whether the law might be used to bury mistakes.” (16) At the time this report is being written, the facility had agreed to drop its plans to stop treatment and to help the woman’s family seek a long-term care facility where the woman would be transferred.
Texas law is the most draconian regarding “futile care.” It permits a hospital committee to decide that a patient’s care is futile. Following that finding, the patient or decision-maker has ten days, during which the “futile care” must be provided, to find another facility that will take the patient. If another facility cannot be found within that time, the facility may withdraw the “futile care.” (17)
Because of cases like this, Texas lawmakers are expected to consider changing the law in the upcoming legislative session.
Most other states, as well as Texas, do permit healthcare providers to refuse to honor a patient’s decision or that of the patient’s designated decision-maker. But, as noted above, under federal law, the healthcare provider in every state must inform the patient or decision-maker of such policies at the time of admission.
Often, healthcare providers do not follow federal requirements. Instead, they attempt, by intimidation, to force a patient or decision-maker to accept the provider’s decision. That’s why it is necessary to know your rights, to insist that the law be followed and, if necessary, engage legal counsel. Frequently, a discussion with a friendly local news reporter can serve as a catalyst that leads the healthcare provider to “remember” to follow the law.
IF IT’S LEGAL, IS IT ETHICAL?
Not necessarily. Consider this:
On the night of March 13, 1964, 28-year-old Kitty Genovese was murdered as she was returning home from work. Hers was certainly not the first, nor was it the last, murder in a quiet middle class New York neighborhood. But, within weeks, her name became known across the country. The circumstances of her brutal killing gave rise to what is called the “Genovese Syndrome,” and articles are still written about her death.
As Kitty Genovese was struggling to escape her attacker, she screamed, “Oh, my God, help me. Please help me.” She ran. She stumbled. She tried to fight off her attacker. As all of that was going on, lights went on and windows opened in the buildings along the street.
Later, it was determined that more than 38 of her neighbors looked on as she was stabbed over and over. Not one of them picked up a telephone to call the police. It was even reported that one couple pulled chairs up to their window to watch. (18)
Kitty Genovese’s neighbors became the targets of public outrage and symbols of public apathy. But they were not prosecuted.
Even though a simple phone call from any one of them could have saved her life, the neighbors did nothing illegal. But what they did was certainly unethical.
There is a very big difference between what is legal and what is ethical.
Today, when discussing medical treatment and care, there is also a distinction between what is legal and what is ethical. Nowhere is this more evident than in the debate over the provision of food and fluids.
THE FOOD & FLUIDS DEBATE
In 1983, reflecting on the possible outcome of the “food and fluids debate” that was just getting underway, Daniel Callahan, who was then the director of the Hastings Center, wrote that “…a denial of nutrition, may, in the long run, become the only effective way to make certain that a large number of biologically tenacious patients actually die.” He further predicted, “Given the increasingly large pool of superannuated, chronically ill, physically marginal elderly, it could well become the nontreatment of choice.” He noted, however, that there was still a “deep-seated revulsion” to withholding or withdrawing food from patients. (19)
It took only months for that deep-seated revulsion to begin to dissolve.
Is tube feeding new, expensive and risky?
Since the 1980s, much has been said and written about the provision of food and fluids by means of a tube. In virtually every discussion of tube feeding, some commentator or “expert” declares tube feeding to be an extraordinary means of keeping people alive with new, expensive, and risky medical technology.
Writing in the March 1984 Seminars in Neurology, Dr. Ronald Cranford claimed, “Two or three decades ago it simply was not possible to deliver fluids and nutrition by the artificial route to patients with severe brain damage, since these techniques had not yet been developed.” (20)
Cranford was wrong.
Tube feeding, sometimes called “artificial feeding,” has been in common use for more than 100 years. Two articles, published in the 1896 Transactions of the Kentucky Medical Society, described the ease with which feeding by gastrostomy tube (g-tube) was being accomplished at that time.(21)
The food, placed in a feeding tube, is not expensive. A full day’s supply generally averages under $10. Nor is it exotic. One type of liquid nutrition used in feeding tubes is sold in virtually every supermarket. Called Ensure, it comes in a variety of flavors from vanilla to butter-pecan, and can be consumed as a meal replacement for people on the go or put in a feeding tube.
If it is a quick meal for anyone, how can it be an “extraordinary medical treatment” when it is placed in a feeding tube? If food placed in a feeding tube becomes medical treatment, does that mean that penicillin or aspirin become food when taken by mouth?
Some claim that insertion of a g-tube is a very risky surgical procedure. However, they are mistaken. A Massachusetts case indicates that depiction of risk may depend very much on the social status of the person involved:
Ninety-two-year-old Mary Hier had lived in mental hospitals for more than half of her life. She signed her name “Mary Hier, Queen of England.” She wasn’t terminally ill, but because of a throat problem, she had received food by means of a g-tube for years.
When that tube became dislodged, the health facility asked the court’s permission to reinsert the tube. The judge denied permission saying that implanting the tube would be a “highly intrusive and highly risky procedure.” (22)
Just after Mary Hier’s case was decided, a Boston newspaper ran an article about the health status of a 94-year-old woman. That woman was described as doing well following a minor medical procedure “to correct a nutritional problem.” (23)
The woman’s name was Rose Kennedy. The minor medical procedure was insertion of a g-tube.
For Mary Hier – elderly, demented, poor, and without family – the same surgery was described as “highly invasive and highly risky.” For Rose Kennedy – mother of a president and U.S. senators – it was considered a “minor procedure.”
Fortunately for Mary Hier, last minute intervention resulted in her g-tube being reinserted. She lived comfortably for several years after that – happily signing her name “Mary Hier, Queen of England.”
Tube feeding has been commonly used for more than one hundred years and is used by hundreds of thousands of people. (24) It is not expensive. But it is legally considered a “medical treatment” and it is routinely withheld or withdrawn.
Some who receive nourishment by tube do so because they can’t swallow, but this doesn’t affect their ability to hold down jobs or, for that matter, to take unaccompanied vacations to faraway places.
In most cases, however, those who are tube fed are dependent on others for much or all of their care. In long-term care facilities, people who can chew and swallow if spoon-fed are sometimes placed on tube feeding because it is less time-consuming for caregivers. After months of tube feeding, the ability to swallow can become atrophied. Ironically, this then presents the opportunity or excuse to remove food and water, because it is “medical treatment.”
Is spoon feeding optional?
“Artificial feeding” is not a medical term. It is a catch phrase that is generally thought to mean tube feeding. However, in court cases, expert witnesses have testified that “artificial feeding” can include spoon feeding and that the food brought on a tray to a patient in a convalescent care home can be considered “medical treatment” because the patient’s diet must be approved by a physician. (25)
In a 2006 letter to a Vermont newspaper, Dr. Ethan A. H. Sims suggested that individuals could “avoid inappropriate prolongation of life by spoon feeding” by filling out a Vermont Living Will, indicating [in the space for desires, special provisions and limitations] that they not be fed by spoon if they develop “severe dementia or an incurable illness.” (26)
A novel way in which cessation of food and fluids by mouth may be interpreted was described by Connie Holden, the former nurse-administrator of a Colorado hospice. Speaking at a Michigan conference, Holden explained her involvement with the dehydration deaths of three nonterminally-ill patients:
One such patient was an elderly woman who was so physically healthy that she hadn’t seen a doctor for ages. She had what Holden referred to as “the dwindles” (a term she used for the aging process). The woman had researched ways to end her life and had decided to stop eating and drinking so she would die.
The woman – not dying, not even ill – was admitted to the hospice so she could receive any pain control that might be necessary as she starved and dehydrated to death.
Asked how this woman or other similar patients could be considered “terminally ill” as required for hospice care, Holden stated, “The definition of terminally ill, of course, is six months or less and we knew that all three of these patients would die in six months or less if they stopped eating.” Thus, the patients were deemed to be terminally ill. (27)
Using Holden’s interpretation, a law that permits assisted suicide or euthanasia for persons who are terminally ill could apply to virtually anyone if that person is no longer receiving food or fluids.
Food & Fluids: Treatment or Care?
As discussed above, food and fluids, especially if provided by tube, are considered “medical treatment” from a legal standpoint. Whether one agrees or disagrees with this, it is entrenched in the law.
But, again, not everything that is legal is ethical. So, from an ethical standpoint (as well as from a common sense consideration), is the provision of food and fluids “treatment”? Or is it basic care to which everyone has a right?
“Treatment” is defined as “the application of remedies to relieve or cure a disease or disorder.” (28)
There are four major necessities of life that every person needs. They are warmth, hygiene, food and fluids, and repositioning or movement. Let’s consider each of these:
In the middle of a Minnesota winter, when the temperature is 30 degrees below zero,any person who does not have adequate warmth will die.
Does warmth cure a disease or disorder?
It prevents problems – hypothermia and freezing to death.
Without warmth, any person would die.
Warmth is basic care, not treatment.
If any person’s body is not cleaned, if any person is surrounded by bodily wastes, disease and infection will result, leading to death.
Does hygiene cure a disease or disorder?
Hygiene prevents problems – infection and disease.
Without it, any person would die.
Hygiene is basic care, not treatment.
Food & fluids
If any person does not have food or fluids, starvation and dehydration will result.
Do food and fluids cure a disease or disorder?
They prevent a problem – starvation or dehydration.
Without them, any person would die.
Food and fluids are basic care, not treatment.
Repositioning or movement
If any person remains immobile for a great length of time, pressure sores (bed sores) will occur, resulting in infection and death.
Do repositioning or movement cure a disease or disorder?
They prevent a problem – death from pressure sore infections.
Without repositioning or movement, any person would die.
Repositioning or movement is basic care, not treatment.
Whether a healthy Olympic athlete or a frail patient, completely dependent on others for care, each and every person needs warmth, hygiene, food and fluids, and repositioning or movement to prevent – not to cure – disease or illness.
Since food and fluids are ethically basic care, does this mean that they must always be provided to every patient in all circumstances?
No. There are situations where giving food and water, whether by mouth or by tube feeding, would be futile or excessively burdensome. For example, patients who are very close to death may be in such a condition that fluids would cause a great deal of discomfort or may not be assimilated. Food may not be digested as the body begins “shutting down” during the dying process.
There comes a time, when a person is truly imminently dying – within hours or a few days, not within weeks or months – that simply wiping the brow and moistening the lips with ice chips may be all that need be done. No one is saying that food and fluids should be forced on such a person. This would be burdensome and futile.
Additionally, in extremely rare cases, where the very means of providing food and fluids would be excessively burdensome and/or painful for the patient, a decision to withhold feeding in such a situation would be ethical.
However, practically speaking, decisions to deny food and fluids do not center around “burdensome means.” The decisions, instead, focus on people who are considered “burdens.”
The real questions are: “Do we continue to feed people who are disabled, demented, abandoned, or unwanted? Or do we end their lives by the universally effective, deadly measure of stopping food and fluids?”
Removing food and water because the person is considered burdensome or “better off dead” is legally permitted. Ethically, it is a way of killing the person – directly, intentionally, and cruelly.
Not many years ago, discussions about denying food and fluids were shocking. The reverse is now the norm. Healthcare providers are more likely than not to suggest and, in some cases, pressure patients or their decision-makers to authorize withholding or withdrawal of the “medical treatment” of food and fluids.
That is another reason why it is so important that a person be assertive regarding his or her own rights and name an agent in a durable power of attorney for health care (like the PMDD) who can be assertive on the person’s behalf.
In the current legal and ethical climate, a certain irony prevails. At the same time that assisted-suicide advocates are promoting their agenda in the name of “personal choice,” many “ethicists” and “experts” are attempting to limit medical treatment or care – even if the patient or patient’s decision-maker requests it.
That is why it is so important to:
Be informed about legal and political developments.
Actively oppose assisted suicide and euthanasia.
Actively support patients’ rights.
Protect yourself by signing a protective durable power of attorney for health care like the ITF’s Protective Medical Decisions Document.
Let others know about the need to sign such a document.
Do not be intimidated by healthcare providers and ethics committees who may pressure you to accept their decisions.
Know your rights if there is a dispute over your medical care or that of a person for whom you are the designated decision-maker.
This is the only way to make certain that a patient’s right to receive treatment and care are not replaced by a doctor’s power to deny care, prescribe a deadly overdose or administer a lethal injection.
Endnotes for Part I:
1. Some portions of Assisted Suicide: Not for Adults Only? are included in this report. For entire text, see Not for Adults Only.
2. “20 October 2004, Pediatricians and child neurologists of the Groningen Academic Hospital find that in very extraordinary cases doctors must have the possibility of ending the life of young children…. Groningen pediatricians in the past years have developed a protocol that can serve as a guideline in cases of the active ending of life. The protocol serves as guarantee for careful action and makes the manner of work of the medical treatment team transparent and testable.” English translation from “Protocol waarborgt zorgvuldigheid bij levenseinde kind” 29 October 2004, accessed at: http://www.azg.nl/azg/nl/nieuwa/persberichten/43604.
3. Toby Sterling, “Netherlands hospital says it has euthanized 4 gravely ill babies,” San Francisco Chronicle, Dec. 1, 2004.
4. “‘Legalise euthanasia’ says expert,” BBC News, June 8, 2006.
5. “Baby Euthanasia,” ABC News’ World News Tonight Transcript, Dec. 4, 2005.
7. Family notification is only recommended, but not required, under Oregon’s assisted-suicide law. ORS 127.835 §3.05.
8. Bill Kettler, “Family lives through emotions of mother’s assisted suicide,” Mail Tribune (Medford, OR), July 7, 2000.
9. Jason O’Bryan, “Right to die must be legalized, protected,” The Daily Bruin Online, Jan. 20, 2006.
10. The new name was approved by the VES in 2005 and went into effect in January 2006. The British organization followed the lead of U.S. and Australian euthanasia and assisted-suicide groups that have also changed their names to portray a more appealing image. For more information on the name changes.
11. M.A. Branthwaite, “Time for change,” British Medical Journal, vol. 331 (Sept. 24, 2005), p. 681.
12. David Ammons, “Former governor says he’ll offer ‘assisted death’ measure,” Seattle Post-Intelligencer, Feb. 7, 2006.
13. “The Compassionate Choices Act” (AB 651) failed on June 27, 2006. For information on the bill and the campaign waged by both proponents and opponents, see: cal.htm.
14. “Right to die — a just choice or are we failing the ailing?” San Francisco Chronicle, Feb. 20, 2005.
15. Robert G. Faber, “Vote yes on Proposal B: Patients need right to choose,” Jackson Citizen Patriot (Jackson, MI), Oct. 25, 1998.
16. Clare Dyer, “Lords back bill to legalise assisted suicide,” British Medical Journal, vol. 331 (Nov. 19, 2005), p. 1160.
17. I.G. Finlay, V.J. Wheatley, C. Izdebski, “The House of Lords Select Committee on the Assisted Dying for the Terminally Ill Bill: implications for specialist palliative care,” Palliative Medicine, vol. 19 (Sept. 2005), p. 445.
18. Full text of ad from “Analyzing the Ads,” Oregonian, Oct. 14, 1994. Much of Rosen’s account about Jody’s death was found to be fabricated. See : “Assisted Suicide: The Continuing Debate”
19. Message titled, “Death with Dignity Hearing Info,” from Scott Foster of Scott Foster & Associates to right-to-die mailing list, Feb. 21, 2002.
20. “Crowd packs ‘death with dignity’ hearing,” Rutland Herald, Apr. 13, 2005.
21. Dick Walters, “Death with Dignity,” Letters to the Editor, Burlington Free Press, Apr. 12, 2005.
22. House of Lords Select Committee on the Assisted Dying for the Terminally Ill Bill, Assisted Dying for the Terminally Ill Bill [HL] Volume II: Evidence. Apr. 4, 2005, question 89. (Emphasis added.)
Proceedings of the committee hearings were published in two volumes.
Available at: http://www.publications.parliament.uk/pa/ld200405/ldselect/ldasdy/86/86ii.pdf (last accessed Feb. 23, 2006).
23. Daniel Foggo, “Chain of suicide clinics planned,” Sunday Times (London), Apr. 16, 2006.
24. Craig A. Brandt et al, “Model Aid-in-Dying Act,” 75 Iowa Law Review (1989-90), pp. 125-215.
25. Linda Rockey, “A Call for Compassion: Nurse Leads Fight for Physician-Assisted Suicide,” Chicago Tribune, Feb. 8, 1998; Tom Bates, “Chief petitioner answers questions on Measure 16,” Sunday Oregonian, Nov. 27, 1994; Elise Chidley, “PA Heads Right to Die Group,” PA Today (professional journal for physician’s assistants), March 21, 1997, p. 8.
26. Diane Gianelli, “Oregon bill would allow euthanasia,” American Medical News, Apr. 1, 1991 and Tom Bates, “Chief petitioner answers questions on Measure 16,” Sunday Oregonian, Nov. 27, 1994.
27. Listing and description of failed assisted-suicide proposals.
28. Michigan’s 1998 “Terminally Ill Patient’s Right to End Unbearable Pain or Suffering,” also known as “Proposal B,” was a 12,000 word voter initiative that confused even its supporters. The initiative failed by 71% to 29%.
29. ORS 127.865 §3.11.
30. Supra note 22. Remarks by Lord McColl of Dulwich, HL, p. 334, question 956. (Emphasis added.)
31. DHS, “Eighth Annual Report on Oregon’s Death with Dignity Act,” March 9, 2006 (http://egov.oregon.gov/DHS/ph/pas/docs/year8.pdf).
32. Linda Prager, “Details emerge on Oregon’s first assisted suicides,” American Medical News, Sept. 7, 1998. (Emphasis added.)
33. Joe Rojas-Burke, “Suicide critics say lack of problems in Oregon is odd,” Oregonian, Feb. 24, 2000.
34. Oregon Health Division, CD Summary, vol. 48, no. 6 (March 16, 1999), p. 2 (http://www.ohd.hr.state.or.us/chs/pas/pascdsm2.htm).
35. Supra note 31, p. 23. The annual report states that the presence of the attending physician in the 48 out of 246 reported deaths is 28%, however the calculation is mathematically inaccurate. The correct calculation is 19.5%.
36. DHS, “Fifth Annual Report on Oregon’s Death with Dignity Act,” March 6, 2003, p. 9 (http://www.ohd.hr.state.or.us/chs/pas/year5/ar-index.cfm).
37. Supra note 22. Testimony of Katrina Hedberg, p. 263, question 597.
38. Ibid., p. 259, question 567.
39. Ibid. Testimony of Melvin Kohn, p. 263, question 598.
40. Erin Hoover, “Dilemma of assisted suicide: When?” Oregonian, Jan. 17, 1999 and Erin Hoover, “Man with ALS makes up his mind to die,” Oregonian, March 11, 1999.
41. Audio tape on file with author. Also see Catherine Hamilton, “The Oregon Report: What’s Hiding behind the Numbers?” Brainstorm, March 2000 (http://www.brainstormnw.com); David Reinhard, “The pills don’t kill: The case, First of two parts,” Oregonian, March 23, 2000 and David Reinhard, “The pills don’t kill: The cover-up, Second of two parts,” Oregonian, March 26, 2000.
42. Johanna H. Groenewoud et al, “Clinical Problems with the Performance of Euthanasia and Physician-Assisted Suicide in the Netherlands,” 342 New England Journal of Medicine (Feb. 24, 2000), pp. 553-555.
43. Associated Press, “Assisted suicide attempt fails,” March 4, 2005.
44. DHS news release, “No authority to investigate Death with Dignity case, DHS says,” March 4, 2005.
45. Supra note 22. Testimony of Katrina Hedberg, p. 266, question 615.
46. Ibid. Testimony of David Hopkins, pp. 259-260, question 568.
47. Ibid. Testimony of Jim Kronenberg, p. 347, question 1035.
48. Supra note 42.
49. Sherwin Nuland, “Physician-Assisted Suicide and Euthanasia in Practice,” 342 New England Journal of Medicine (Feb. 24, 2000), pp. 583-584.
50. ORS 127.825 §3.03.
51. Andis Robeznieks, “Assisted-suicide numbers in Oregon,” American Medical News, Apr. 5, 2004.
52. Supra note 31, p. 23, Table 4. (Emphasis added.)
53. Supra note 22. Testimony of Katrina Hedberg, p. 259, question 566. (Emphasis added.)
54. Ibid., p. 259, question 567. (Emphasis added.)
55. Erin Barnett, “A family struggle: Is Mom capable of choosing to die?” Oregonian, Oct. 17, 1999.
56. Peter Goodwin was an Associate Professor (now professor emeritus) in the Department of Family Medicine at the Oregon Health Science University in Portland, Oregon and was Chair of Oregon Right to Die during the campaign to pass Oregon’s assisted-suicide law. He had been active in the Hemlock Society. Speaking at a 1993 Hemlock conference in Orlando, Florida, he explained that he favored both the lethal injection and assisted suicide, but he realized that most people were not yet ready to accept the former so incremental steps would need to be taken.
57. Erin Hoover and Gail Hill, “Two die using suicide law; Woman on tape says she looks forward to relief,” Oregonian, March 26, 1998; Kim Murphy, “Death Called 1st under Oregon’s New Suicide Law,” Los Angeles Times, March 26, 1998; and Diane Gianelli, “Praise, criticism follow Oregon’s first reported assisted suicides,” American Medical News, Apr. 13, 1998.
58. N. Gregory Hamilton, M.D. and Catherine Hamilton, M.A., “Competing Paradigms of Responding to Assisted-Suicide Requests in Oregon: Case Report,” presented at the American Psychiatric Association Annual Meeting, New York, New York, May 6, 2004 (http://www.pccef.oorg/articles/art28.htm).
59. Supra note 31, p. 23, Table 4.
60. ORS 127.800 §1.01(12), ORS 127.815 §3.01 (a), and ORS 127.820 §3.02.
61. Supra note 58.
62. Department of Human Services (DHS), Oregon Health Division (OHD), “Oregon’s Death with Dignity Act: The Second Year’s Experience,” Feb. 23, 2000, Table 2 (http://www.ohd.hr.state.or.us/chs/pas /year2/ar-index.cfm).
63. Katrina Hedberg et al, Letter to the editor in response to “The Oregon Report: Neutrality at OHD?” Hastings Center Report, January-February 2000, p. 4.
64. Supra note 22. Testimony of Jim Kronenberg, p. 351, question 1054.
65. Compassion and Choices of Oregon web site (http://www.compassionoforegon.org) last accessed March 6, 2006.
66. Supra note 22. Testimony of Peter Rasmussen, p. 312, question 842. (Emphasis added.)
67. ORS 127.840 §3.06 and ORS 127.850 §3.08.
68. Supra note 31, p. 24, Table 4.
69. Amy Sullivan, Katrina Hedberg, David Fleming, “Legalized Physician-Assisted Suicide in Oregon – The Second Year,” 342 New England Journal of Medicine (Feb. 24, 2000), p. 603.
70. Supra note 31, p. 9.
71. Supra note 22. Testimony of Katrina Hedberg, p. 262, question 591.
72. Jennifer Page, “A Death in Oregon: One Doctor’s Story,” Washington Post, Nov. 3, 1999.
73. Supra note 22. Testimony of Sue Davidson, pp. 352-353, question 1058.
74. Ibid. Letter from Barbara Glidewell, included in testimony transcript, p. 268, number 3.
75. Ibid., p. 270, question 623.
76. Ibid., p. 275, question 653.
77. “The Oregon Death with Dignity Act: A Guidebook for Health Care Professionals,” (2005), developed by The Task Force to Improve the Care of Terminally-Ill Oregonians, convened by The Center for Ethics in Health Care, Oregon Health & Science University; Chapter 10, Pharmacists and Pharmacy-Related Issues, p. 4. Available at: http://www.ohsu.edu/ethics/guidebook/chapter10.pdf. (Last accessed Feb. 23, 2006.) The guidebook notes, “The Act specifically states: ‘Nothing in ORS 127.800 to 127.897 shall be construed to authorize a physician or any other person to end a patient’s life by lethal injection….’” [Chapter 10, p. 4. (Emphasis added.)] It does not specifically state that a patient cannot end his or her own life by lethal injection.
78. Supra note 22. Testimony of Katrina Hedberg, p. 267, question 621.
79. Ibid., p. 257, question 555.
80. Ibid. Testimony of Kathleen Haley, p. 323, question 889.
81.Ibid., p. 323, question 892.
82. Ibid. Testimony of Katrina Hedberg, p. 262, question 592.
83. Andis Robeznieks, “HMO query reignites assisted-suicide controversy,” American Medical News, Sept. 9, 2002.
86. Transcript of tape of Peter Goodwin, “Oregon” Jan. 11, 2003, presented at 13th National Hemlock Biennial Conference, “Charting a New Course, Building on a Solid Foundation, Imagining a Brighter Future for America’s Terminally Ill,” Jan. 9-12, 2003, Bahia Resort Hotel, San Diego California.
87. “Compassion in Dying of Oregon Summary of Hastened Deaths,” Data attached to Compassion in Dying of Oregon’s IRS Form 990 for 2003.
88. The co-director of Compassion and Choices was the chief petitioner for the Oregon law. Compassion and Choices spearheaded California’s failed legislative measure – the “Compassionate Choices Act” (AB 651) modeled on Oregon’s law.
89. Supra note 22. Testimony of Elizabeth Goy, p. 291, question 768. (Goy is an assistant professor, Dept. of Psychiatry, School of Medicine, OHSU, and has worked with Linda Ganzini in formulating results of surveys dealing with Oregon’s law.)
90. Ibid. Testimony of Barbara Farmer, p. 302, question 794. (Farmer is Director, Home Care and Manager for Legacy VNA Hospice, part of the Visiting Nurse Association and the Legacy Health System.)
91. Erin Hoover Barnett, “Suicide coverage passes review,” Oregonian, Apr. 26, 1999.
92. Supra note 22. Testimony of Ann Jackson, p. 307, question 819. (Jackson is Executive Director and Chief Executive, Oregon Hospice Association. She is also the primary spokesperson for OHA and Oregon hospices about the Oregon law.)
93. ORS 127.835 §3.05.
94. ORS 127.860 §3.10.
95. Supra note 22. Testimony of Katrina Hedberg, p. 267, question 620. (Emphasis added.)
96. Ibid. Testimony of Sue Davidson, pp. 357-358, question 1098.
Endnotes Part 2:
1. All of the answers are “no” or “not always” as this report explains.
2. Tenn. Code Ann. § 68-11-1806 (2005).
3. Burns Ind. Code Ann. § 16-36-1-5 (2006).
4. W. VA Code § 16-30-8 (2006).
5. Conn. Gen. Stat. § 19a-571 (2006).
6. Cal. Prob. Code § 4711 (2006).
7. Fla. Stat. § 765.401 (2006)
8. David Wasson, “Report details events prior to woman’s death at nursing home,”Yakima Herald-Republic, March 4, 1993 and David Wasson, “‘No code’ nightmare,”Yakima Herald-Republic, March 14, 1993.
9. A PMDD packet can be obtained by contacting ITF at 740-282-3810 or 800-958-5678. Although a donation is appreciated for the packet, it is not required.
10. Advance Directives, 42 CFR 489.102 (a) (1) (i) (2006).
11. Advance Directives, 42 CFR 489.102 (a) (2) (2006).
12. Advance Directives, 42 CFR 489.102 (a) (3) (2006).
13. Individual state laws contain wording similar to that of federal regulations.
14. Advance Directives, 42 CFR 489.102 (a) (1) (ii) and (b) (2006). State laws vary on the conditions under which a healthcare provider may refuse to honor a patient’s or a decision-maker’s decision. In all cases, however, the notices mandated by federal law must be provided.
15. For an excellent discussion of “futile care theory,” see: Wesley J. Smith, Forced Exit, (Encounter Books, 2006 edition).
16. Todd Ackerman, “Texas’ patient care law at hub of Houston dispute,” Houston Chronicle, July 8, 2006.
17. Tex. Health & Safety Code § 166.046 (2005).
18. “The night that 38 stood by as a life was lost,” New York Times, March 12, 1984. This was one of many articles written on the 20th anniversary of Kitty Genovese’s death.
19. Daniel Callahan, “On Feeding the Dying,” Hastings Center Report, Oct. 1983, p. 22. (Emphasis added.)
20. Ronald A. Cranford, “Termination of Treatment in the Persistent Vegetative State,”Seminars in Neurology, vol. 4, no. 1, March 1984, p. 41. Cranford served as an expert witness, advocating the withdrawal of food and fluids, in virtually every high profile food and fluids case from the 1980′s until his death on May 31, 2006. Among the cases were those of Nancy Cruzan, Nancy Ellen Jobes, Christine Busalacchi, Michael Martin, Robert Wendland and Terri Schiavo. (Emphasis added.)
21. McMurtry, “Modern Gastrostomy for Stricture of the Esophagus, with Report of a Case,” and Coomes, “Gastrostomy, with Report of a Case,” Transactions of the Kentucky Medical Society (1896).
22. In re Hier, 18 Mass. App. 200, 464 N.E. 2d 959, 964 (1984).
23. “Rose Kennedy ‘doing well’ after surgery,” Boston Globe, July 29, 1984, p. 35.
24. A 1987 government report found that at least 848,100 people per year receive food by means of a tube in hospitals, nursing homes or their own homes. Office of Technology Assessment, U.S. Congress, Life Sustaining Technologies and the Elderly, (1987), p. 294.
25. Cruzan v. Harmon, 760 S.W. 2d 408 (Mo. 1988) (No. CV 384-9P), transcript, pp. 163 and 228; McConnell v. Beverly Enterprises, 209 Conn. 692, 553 A. 2d 596 (1988) (No. 0293888), transcript, p. 56; Testimony of Eric Cassell, M.D. before the Committee on Finance, United States Senate, May 5, 1994, p. 4.
26. Ethan A. H. Sims, M.D., “Letter to the Editor: Another option at end of life,”Burlington Free Press, May 31, 2006.
27. Connie Holden, RN, at the 10th National Hemlock Conference, June 7, 1998, transcripts of Tapes SU1 and SU2. (On file with author.) At the time of the conference, Holden was executive director of Boulder County Hospice and served on the executive committee of the Colorado Hospice Organization.
28. The American Heritage Dictionary, Second College Edition.
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Rita L. Marker is an attorney and executive director of the Patients Rights Council. Updated: 12/06