FEDERAL PAIN BILL GAINS SUPPORT,
BANS DRUG USE FOR ASSISTED SUICIDES
New federal legislation, which would promote aggressive pain management while outlawing the use of controlled substances for assisted suicide and euthanasia, has gained powerful support from groups such as the American Medical Association (AMA) and the National Hospice Organization (NHO).
Co-sponsored by Sen. Don Nickles (R-Okla.) and Rep. Henry Hyde (R-Ill.), the Pain Relief Promotion Act of 1999 (PRPA) would amend the federal Controlled Substances Act (CSA) so as to (1) affirm that pain control is a legitimate medical purpose, even if the use of controlled substances increases the risk of death, and (2) reaffirm that, under current law, the use of controlled substances for suicide assistance and euthanasia is not allowed.
The measure counters U.S. Attorney General Janet Reno’s controversial ruling last year – that Oregon’s law permitting assisted suicide does not violate federal law – by expressly mandating that “the Attorney General shall give no force and effect to State law authorizing or permitting assisted suicide or euthanasia.” [PRPA, Sec. 101. See also, Update, 4-6/98]
In addition, the PRPA would provide $5 million for research grants and to set up palliative care educational programs for doctors and health professionals. [PRPA, Sec. 202(b)(2)] “Alleviating pain and other distressing symptoms in cases of advanced chronic disease and terminal illness is a public health priority,” Nickles explained. “It is my desire to see that better pain control methods are discovered, offered in medical training and made available to anyone in need.” “At the same time,” he added, “this bill re-affirms the intent of Congress that using federally controlled substances for the purpose of assisting in suicide is not allowable under existing law.” [Nickles, Press Release, 6/17/99]
Last year, both Nickles and Hyde sponsored Senate and House versions of the Lethal Drug Abuse Prevention Act of 1998, which, along with prohibiting the use of controlled drugs to intentionally end patients’ lives, would have set up a “Medical Advisory Board on Pain Relief,” comprised of pain management specialists and clinical experts, to review questionable cases as to the appropriateness of the prescribed medication. Both versions failed to pass their respective houses, largely due to opposition from medical groups like the AMA and NHO, which voiced their concerns that doctors would actually do less to control pain out of fear of being second-guessed by the government’s oversight board. (See Update, 7-10/98)
But this year’s PRPA has eliminated the oversight threat, paving the way for the AMA, NHO, American Academy of Pain Management, the American Society of Anesthesiologists, and others to endorse the measure. [AP, 6/26/99] According to AMA President Dr. Thomas Reardon, “I think the general feeling was that the modifications were enough that this would not have an impact on patients, and physicians would still feel comfortable with aggressive treatment.” [Oregonian, 6/25/99]
U.S. Sen. Ron Wyden (D-Oregon) has vowed to fight what he sees as the federal government’s overriding of Oregon’s right to legalize assisted suicide. “I’m hopeful that as we show how intrusive the Nickles bill is… the vast majority of physicians in the country are going to be supportive of our approach,” he said. Predictably, Barbara Coombs Lee, co-author of Oregon’s assisted-suicide law and head of the assisted-suicide advocacy group Compassion in Dying Federation, criticized the AMA’s endorsement, saying that its board members are “allowing their zeal for opposition to assisted dying to cloud their judgment.” [AP, 6/26/99]
Dr. Gregory Hamilton, head of Oregon’s Physicians for Compassionate Care, disagrees. “The Pain Relief Promotion Act of 1999 goes a long way toward helping doctors and nurses meet the physical, psychological, social and spiritual needs of suffering patients,” Hamilton told the House Judiciary Subcommittee on the Constitution. “[This] legislation clarifies that controlled substances may not be used intentionally to kill patients in any of the 50 states…. It protects physicians and nurses. And it protects patients.” [Hamilton, Summary Statement, House Judiciary Subcommittee on the Constitution, 6/24/99]
IAETF Special Report
BROAD COALITION OPPOSES CALIFORNIA PAS BILL
Kill the bill, not the ill!
We won’t take your deadly pill!
This is what we’re going to do:
Kill AB 1592!
They had come to be counted, to have their collective voices heard. They followed one clever chant with another, as they marched unceasingly up and down the sidewalk in front of California’s State Capitol Building in Sacramento.
One, two, three, four,
Death-squad medicine will kill the poor.
Five, six, seven, eight,
Stop 1592 before it’s too late!
The over 100 demonstrators represented the most diverse grass-roots coalition to form thus far against the legalization of assisted suicide and euthanasia. There were disability rights activists, health care professionals, the poor and advocates for the poor, lawyers, teachers, migrant farm workers, the clergy and faithful from a wide variety of religions, and those who fit no particular category other than concerned citizen. It was truly a slice of America, each one peacefully demonstrating for society’s most vulnerable.
HMOs make lots of dough
When medical care is denied the poor.
To make their profits really high,
They’ll offer assisted suicide!
The focus of concern was AB 1592, a bill sponsored by Assemblywoman Dion Aroner (D-Berkeley) that would make assisted suicide legal in California. The bill, otherwise known as the California “Death with Dignity Act” (DWDA), is closely patterned after Oregon’s assisted-suicide law, which was enacted in 1997.
Certainly, the battle over euthanasia and assisted suicide is nothing new for California. In fact, no other state has faced these issues more times. In 1988, it was the “Humane and Dignified Death Act,” a euthanasia initiative which failed to garner enough signatures to qualify for the ballot. Then, in 1992, there was another euthanasia initiative, the first “Death with Dignity Act,” which made it to the ballot as Proposition 161, but was ultimately defeated by the voters. The next time the DWDA surfaced was in 1995, this time as two identical assisted-suicide-only bills sponsored by two different assemblywomen. Neither bill made it out of committee.
The organization behind all the legalization attempts in California has been the pro-euthanasia group Americans for Death with Dignity. They are also behind the most recent attempt, Aroner’s AB 1592.
They say they want to help us.
Don’t listen to their lies.
Stop AB 1592
So we won’t have to die.
For the demonstrators marching in front of the Capitol Building, there was a sense of urgency. AB 1592 had already passed the Assembly Judiciary Committee and was now before the Appropriations Committee, the last stop before it would reach the full Assembly for a floor vote.
What was becoming painfully clear was that those who favored AB 1592 within the Assembly itself were not going to play fair. That was evident when the bill was up for vote in the Judiciary Committee, chaired by Assemblywoman Sheila Kuehl (D-Santa Monica), an ally of Aroner. The word around the capitol was that AB 1592 was on the fast track, strategically placed in the Judiciary, where it was expected to pass without any problem. But, when the initial vote was taken on 4/20/99, the bill was defeated – 7 for, 8 against. Resorting to “strong arm” political pressure, Kuehl and Aroner targeted the newest member of the committee, Green Party member Audie Bock, who had voted against the measure because of real concerns over HMO abuses. Bock, however, proved no match for the Kuehl/Aroner team, and changed her vote to “yes.” AB 1592 ended up passing the Judiciary Committee by a vote of 8 for and 7 against.
But now, the bill was being heard in the Appropriations Committee, and opponents inside and outside the Capitol building were going to be vigilant to make sure that what happened in the Judiciary would not happen again.
The Appropriations Committee was chaired by Carole Migden (D-San Francisco), arguably one of the most powerful members of the Assembly, and closely allied with Aroner and Kuehl. Migden was no newcomer to the assisted-suicide issue. In 1997, immediately following the enactment of Oregon’s PAS law, Migden headed two Assembly select committee hearings – one in San Francisco, the other in LA – to review issues related to “pain management and physician assisted dying.” (See Update, 11-12/97.)
AB 1592 was scheduled to be heard on 5/19/99, and the opponents were ready, some marched outside while others filled the committee hearing room to overflowing, making it necessary to open an upstairs balcony. Migden, as well as Aroner and Kuehl, also Appropriations Committee members on that day, were stunned by the show of opposition. IAETF attorney Wesley J. Smith recently described the scene:
“Then an African American stepped forward, angrily declaring, ‘I demand to be heard! I demand to be heard! This bill will harm my community!’ The eyes of the liberals on the committee widened and their jaws dropped. An uncomfortable silence fell. This kind of thing is only supposed to happen to conservatives.” [Smith, Weekly Standard, 6/21/99]
Migden let the man have his say along with those few already scheduled, and then promptly announced that HB 1592 was “in suspense.” Those in attendance were told that the vote would be held the following week on 5/26/99.
Opponents used the time to call and generally lobby the committee members. Informal head counts indicated that AB 1592 would be defeated by a close margin. Aware that the measure did not have the votes to pass and cognizant of the large number of opponents present for the vote, Migden postponed the vote until the next day, telling the opponents that they could go home, there would be no vote that day. But she was not being truthful. After the opponents left, she called the committee together, only this time two “yes” voting members were substituted for two “no” voters, a practice allowed in the Assembly with leadership approval. AB 1592 passed by a vote of 11 to 9.
The fate of the bill is still in question. Aroner, under a legislative deadline, opted to place the bill in the inactive file rather than risk a probable defeat in an Assembly floor vote. But she can resurrect AB 1592 anytime during January 2000 and would have until January 31 to bring it to a full vote.
KEVORKIAN IMPRISONED FOR MURDER OF THOMAS YOUK
Her words were heard almost in a cloud of disbelief. After all, there had been nine years of legal game-playing, five trials, and, most importantly, a reported 137 deaths. Jack Kevorkian had managed – with the help of his former lawyer, Geoffrey Fieger – to thumb his nose at the law and the legal system in Michigan, and still make his weekly poker game with the boys almost without fail. But this day, the words of Oakland County Circuit Judge Jessica Cooper would make history:
“No one, sir, is above the law, no one…. You had the audacity to go on national television, show the world what you did and dare the legal system to stop you. Well, sir, consider yourself stopped.”
And stopped he is, at least for a while. Prisoner No. 284797 currently resides in a 10 by 12 foot cell in the corner of the upper deck at Oaks Correctional Facility in Northern Michigan, sentenced to 10 to 25 years for the 9/17/98 euthanasia death of Thomas Youk. Kevorkian, 71, will be eligible for parole after six years and eight months, according to prosecutors. [Oakland Press, 4/14/99; AP, 4/14/99; Detroit News, 4/15/99]
Kevorkian had orchestrated Youk’s death for his own purposes. He had videotaped himself injecting 52-year-old Youk, who had ALS, with a series of lethal drugs, and then gave the tapes to Mike Wallace of CBS’ 60 Minutes. Youk’s death was then broadcast nationally, complete with Kevorkian’s cold and business-like play-by-play. (See Update, 11-12/98.)
Kevorkian dared Oakland County prosecutors to charge him. Once charged, he decided to act as his own attorney. Judge Cooper reluctantly allowed it, but only after voicing her misgivings numerous times. Kevorkian would not budge. He was going to present his case as no one else could, not even Fieger. He was finally going to be in control. He would, however, have two young lawyers, David Gorosh and Lisa Dwyer, sit at the defense table to coach him when needed, but he seldom listened. He had overestimated his legal acumen, and he was in way over his head. (See Update, 1-3/99.)
Throughout the trial, the jury remained focused on the law and the facts of the case. After the verdict was in, jurors said that Kevorkian’s guilt was never in question. They spent time deliberating whether he was guilty of first- or second-degree murder. They opted for the latter.
According to Jack Lessenberry, a journalist close to the death doctor, Kevorkian tried to look unruffled in the courtroom after the verdict, but was actually furious with the jury. “Not till he got in the car,” Lessenberry wrote, “did he explode, screaming with anger, rage and frustration at the irrationality and cruelty and backwardness of society.” Lessenberry went on to quote Kevorkian as saying, “I am starting my hunger strike now!” [Lessenberry, “Kevorkian: The Final Days,” Hour Detroit, July 1999]
But he didn’t. In fact, he backed off his starvation threat as soon as he was taken into custody. His new lead lawyer, Mayer Morganroth, told reporters that Kevorkian agreed to eat because he needed to be alive and well while the conviction is appealed. But others have suggested that there may have been another reason as well.
On the very same day that Kevorkian went to prison, the state of Michigan reversed its policy on force-feeding prisoners. No longer will a prisoner be force fed against his will. Earlier, Kevorkian had told reporters, “I know they are going to force-feed me, but my captivity is still enslavement….” Morganroth, according to Court TV, questioned the timing of the policy change. “Isn’t that assisted suicide?” he asked. [Court TV, 4/15/99; Detroit Free Press, 4/16/99]
Meanwhile, Morganroth has petitioned for a new trial, claiming errors by Judge Cooper and accusing lawyer David Gorosh of botched pretrial motions and generally letting Kevorkian hang himself. The petition is the first step in what could be years of legal battles. [Detroit News, 5/20/99; Detroit Free Press, 5/22/99]
WHAT OTHERS HAD TO SAY ABOUT
KEVORKIAN & HIS SENTENCE
Geoffrey Fieger, lawyer, on the trial and his estrangement with Kevorkian:
“I couldn’t watch it. He’s a friend, but you’ve got to be careful about self-destructive people, because if you stand next to them, you get hurt yourself.” [Newsweek, 4/26/99]
John Skrzynski, assistant Oakland Co. prosecutor:
“He’s been made a celebrity by everyone, but in that courtroom he was a man, and he was accountable to the law just as surely as you are and as surely as I am.” [Detroit Free Press, 4/14/99]
Marianne Potter, Thomas Youk’s hospice nurse:
“I’m so pleased he got the sentence any other murderer would have gotten, I wasn’t even concerned about the years they were going to end up giving him, just that they gave him something.” [Detroit Free Press, 4/14/99]
Kathryn Tucker, lawyer, Compassion in Dying:
“We’ve always seen him as a back-alley provider who should be put out of business.” [Detroit News, 4/14/99]
Derek Humphry, co-founder, Hemlock Society:
“This is a tragedy for an honorable man….”[Press Release, 4/13/99]
Jack Lessenberry, journalist, describing the scene at Kevorkian’s home last October:
“True, the flute stand was propped up on a cardboard box labeled ‘Death Evidence’ in telltale police yellow tape, and the attached garage filled with wheelchairs whose owners no longer had any use for them. But otherwise it was a fairly normal scene.” [Hour Detroit, July 1999]
Carol Cleigh, spokesperson for disability rights group Not Dead Yet, after days of demonstrating outside the court house:
“I’m crying and laughing at the same time. We have worked so hard for this… We’ve been fighting an organized lobby for our own lives. We finally got justice… They made him a folk hero and we were just a bunch of crazies. Well, we’re not crazy!” [Oakland Press, 4/14/99]
Detroit News, editorial:
“It gives us no great satisfaction to say it, but Jack Kevorkian got what he deserved. The only question that remains is: Why did it take so long?” [4/14/99]
KEVORKIAN APPRENTICE IMPLICATED IN NEW MEXICO DEATH
Authorities in New Mexico have found evidence linking Kevorkian’s protege, psychiatrist Dr. Georges Reding, with the death of Donna Brennan, 54, an Albuquerque woman with multiple sclerosis. According to Bernadette Griego, Brennan’s caregiver, she witnessed Brennan pay Reding $900 for his trip to New Mexico just hours before Brennan was found dead on August 30, 1998. “We have a death here that was caused by a poison, a poison that has to be administered,” said District Attorney Mike Runnels. “You can’t take pentobarbitol by accident.” [AP, 5/13/99]
Reportedly, authorities in Albuquerque have been building a case against Reding since last September, and a recent two-day search of Reding’s home in Michigan produced more evidence related to Brennan’s death. Along with placing Reding in Albuquerque, detectives found records showing that he had made purchases at an animal clinic in Michigan. Pentobarbital is a strong sedative often used to euthanize animals. But there was more. Detectives found other evidence-maps to homes, medical records, and signed assisted-suicide consent forms-possibly linking Reding to multiple deaths in the U.S. and Canada. [Detroit Free Press, 5/14/99; AP, 5/12/99]
Prosecutors in Albuquerque will present their case to a grand jury in July, seeking an indictment against Reding. Assisted suicide is a felony in New Mexico, carrying a sentence of up to 18 months in prison. [AP, 6/17/99; Detroit News, 6/17/99]
PROTESTS WAGED AGAINST PETER SINGER
The article’s headline in the Australian newspaper read simply: “Good riddance to a warped philosopher.” The article was about Peter Singer, the Monash University professor and International Association of Bioethics president, who is moving to the U.S. to join the faculty of Princeton University as the prestigious and tenured Ira W. DeCamp Professor of Bioethics at the Univ. Center for Human Values. [The Age, 4/28/99]
Few in the later half of this century have enraged more people than Singer. He has advocated for the killing of any “non-person,” including “defective” babies, the senile, the comatose, and those physically disabled. Singer dismisses the ethic that all human life is equal, espousing instead a “quality of life ethic.”
“Killing a disabled infant,” Singer has written, “is not morally equivalent to killing a person. Very often it is not wrong at all.” [Practical Ethics, p. 191] Even healthy babies’ lives may not be worth protecting, since babies are not “rational and self-aware.” In fact, Singer holds that parents should have the first 28 days of their infant’s life to decide whether to keep or kill the “non-person” newborn. [NY Times, 4/10/99; Heterodoxy, 9/98]
parliamentary members have compared him to Nazi henchman Martin Bormann and disability groups chant for him to leave. [Washington Times, 3/30/98:A17] The American group Not Dead Yet and others have already made their protests known at Princeton. [Daily Princetonian, 4/21/99] They are echoing the sentiment expressed in the Australian article: “The truth is that Melbourne has not lost by Singer’s move. America most certainly has.” [The Age, 4/28/99]
RESEARCH IN REVIEW
A study, published in the Medical Journal of Australia, has shed new light on the role of the medical consultant in the practice of euthanasia and assisted suicide in the Netherlands. Based on data gathered in 1995 from 405 Dutch physicians, researchers have recommended that doctors who take on the role of euthanasia consultant need to be appointed and undergo special training.
According to established, codified guidelines, Dutch physicians can participate in a euthanasia/assisted-suicide death either by ending the patient’s life or by acting as a consultant to the death-inducing doctor. The consultant’s role is to determine if “the patient’s physician has acted according to the requirements for prudent practice”; whether the patient’s death request is “voluntary, well-considered and persistent”; if the patient’s “suffering is unbearable and hopeless”; and whether there are any remaining “alternatives for treatment.” “A consultant should be competent,” the new study’s researchers wrote, “and independent of both the attending physician and the patient, and should visit the patient.” The use of a consultant is required in the Netherlands for intended euthanasia and assisted suicide deaths.
The study found that approximately 4,000 euthanasia/assisted-suicide consultations took place in 1995. Of the Dutch physicians interviewed, 42% had served as a consultant. Of those, 27% had been a consultant more than three times, with 3% indicating more that ten times. In the majority of cases (60%), the consultant was a general practitioner, not a specialist. Nursing home doctors were the least likely to take on the consulting role. Doctors, who had previously ended patients’ lives (both by euthanasia and assisted suicide), served as consultants more frequently than those who had never killed a patient. According to the researchers, “to act as a consultant, it is not only important to have carried out EAS [euthanasia and assisted suicide], but also to have done so relatively frequently….”
Of those who had served as a consultant more than once, half had been contacted by the same physician who consulted with them “in their most recent case.” In a quarter (24%) of these cases, the death doctor and the consultant had a previous relationship as consultants for each other.
Researchers found these doctors, who had prior consulting relationships, were more likely to agree with the patient’s intended death than physicians with no such relationship. In both cases, however, the rate of euthanasia approval was high: 90% approval from those who had formed consulting “pairs” and 80% approval from those with no established consulting relationship. The study’s authors concluded, “A problem with these consultations may be that the independence of the consultation with regard to the attending physician might be threatened.” Familiarity, they found, was a key factor in the selection of a euthanasia consultant.
As a result, the researchers called for the implementation of a specific training program for euthanasia consultants – already developed by the Royal Dutch Medical Association – which will cover end-of-life skills, emphasize the need for the “prudent practice” of euthanasia and assisted suicide, and address the “medicotechnical” aspects of intentionally ending patients’ lives. “In the future,” the researchers wrote, “it might be advisable to permit only specifically trained physicians to act as a consultant.” [Onwuteaka-Philipsen, van der Wal, Kostense, & van der Maas, “Consultants in cases of intended euthanasia or assisted suicide in the Netherlands,” Medical Journal of Australia (1999) 170: 360-363]
An editorial, published in the same journal issue, was critical of the Dutch study and made the case that euthanasia consultants are more death facilitators than independent evaluators of patients’ circumstances. According to the editorial’s author, Dr. Herbert Hendin, head of the American Suicide Foundation and author of Seduced by Death: Doctors, Patients and the Dutch Cure (W.W. Norton, 1997), this most recent Dutch government-sponsored study – like prior studies also co-authored by Paul J. van der Maas – emphasizes less important procedural problems in Dutch euthanasia practice while ignoring basic and more substantive flaws.
For example, the researchers stated that “consultants need to have knowledge relevant to EAS, such as the possibilities of palliative care. Gaining experience as a consultant seems to be important for a physician to become comfortable in this role.” But, as Hendin pointed out, experience with the intentional termination of patients’ lives adds nothing to a doctor’s knowledge of palliative care. “My own experience with a few physicians in the Netherlands, who had performed or been consultants in dozens of euthanasia cases, was that they were surprisingly uninvolved in palliative care,” Hendin wrote. That observation was substantiated during recent testimony given by Dutch palliative care expert Dr. Zbigniew Zylicz before the British House of Lords. Zylicz emphasized the deficiencies in Dutch palliative care, citing the lack of hospice care, with only 70 palliative care beds in the entire country.
Another claim made by the researchers was that “consultation takes place in about 99% of reported cases of EAS.” [Emphasis added.] While 99% is a high rate and would seem to imply that doctors were complying with the consultation requirement mandated by the euthanasia guidelines, Hendin rightly pointed out that earlier Dutch studies clearly show that the majority (59%) of euthanasia and assisted-suicide deaths are not reported, and only a minority (37%) of the unreported cases involve the use of consultants.
Furthermore, Hendin wrote, in the 1,000 or so involuntary euthanasia cases yearly, “a consultant was virtually never called when the lives of competent patients were ended without their explicit consent.”
While a consultant is supposed to be an independent, objective evaluator of a patient’s condition and situation, he or she basically functions in a “pro forma way,” asking questions that confirm rather than probe the patient’s wish to die. “One physician,” Hendin explained, “described his role as easing the doubts of physicians who were uncertain whether to go forward with euthanasia.” According to the Dutch study, the consulting doctor never even saw the patient in 12% of the consultations. [Hendin, “Editorial: Euthanasia consultants or facilitators?” Medical Journal of Australia (1999) 170:351-352]
Oregon psychologists polled on assisted suicide and state’s PAS law
A recent survey of Oregon psychologists, published in Professional Psychology: Research and Practice, revealed “many unresolved philosophical and practical issues” regarding assisted suicide in general and Oregon’s assisted suicide law in particular.
Under the Oregon law, if a doctor suspects that the patient, who is requesting a lethal prescription, has a psychiatric or psychological disorder or depression causing the patient to have “impaired judgment,” no lethal drugs may be prescribed until that patient is given the okay by a state-licensed psychologist or psychiatrist. The law requires that the patient be referred for “counseling,” which the law defines as simply “a consultation.” [Oregon Death with Dignity Act (DWDA), §127.825 s3.03 and §127.800 s1.01]
While 78% of the psychologists surveyed said they favored the Oregon law, one-third indicated that performing a consultation under Oregon’s assisted-suicide law would be “outside their practice area.” Half (50.3%) indicated that they were “not at all confident” that they could adequately assess in a single consultation whether a psychiatric disorder or depression impaired a patient’s judgment, with 43.2% saying they would be “somewhat confident,” and only 6.5% saying that they would be “very confident.” Conversely, if there was an established, long-term clinical relationship with the patient, only 3.1% said they would be “not at all confident,” while 33.2% felt they would be “somewhat confident, and 64% indicated that they would be “very confident.” [Fenn & Ganzini, “Attitudes of Oregon Psychologists Toward Physician-Assisted Suicide and the Oregon Death with Dignity Act,” Professional Psychology: Research and Practice, June 1999, 235-244. Hereafter cited as Fenn, 1999]
But the Oregon assisted-suicide law does not require a long-term relationship between the patient and the psychologist or psychiatrist, only a single consultation. An earlier companion study done on Oregon psychiatrists, published by the same researchers in 1996, found that the overwhelming majority (94%) did not feel very confident that they could spot a psychiatric disorder which impaired a patient’s judgment in just one consultation. [Ganzini, Fenn et al., “Attitudes of Oregon Psychiatrists Toward Physician-Assisted Suicide,” American Journal of Psychiatry, Nov. 1996, pp. 1469-1475]
In the current study, researchers found that the psychologists’ comments raised “concerns about objectivity” when evaluating patients for assisted suicide. Some respondents said, for example, “The first thing I would do is try to talk the patient out of committing suicide,” while others with biases in favor of physician-assisted suicide would openly admitted that “they would set a very low threshold for what would constitute competence” in a patient requesting death. “If an evaluator judges the rationality of a patient by the degree to which the reasons underlying a patient’s request for assisted suicide match his or her own,” the reseachers wrote, “it is possible that the evaluator’s personal views could sway the outcome of the evaluation.” [Fenn, 1999]
Other concerns center on a long list of unanswered ethical and practical questions, like: “What should the psychologist do if he or she believes that the patient’s judgment is unaffected by such a mental disorder, but nonetheless believes that the patient’s judgment is questionable because of other factors such as family members’ attempts to sway the patient’s decision or the patient’s concerns that he or she is becoming a financial or emotional burden to the family?” [Fenn, 1999]
Oregon report on end-of-life care shows need for improvement
According to a newly released survey, many in Oregon are dying in pain and are being shuffled around from one facility to another at the end of life.
Researchers from the Center for Ethics in Health Care at Oregon Health Sciences University interviewed 475 family members of patients who died in 1996 and 1997. The responses from that study, called “Barriers to Improve Care of the Dying Survey,” were then used by researchers and panels of health professionals as the basis for the formal report “The Oregon Report Card: Improving Care of the Dying.”
According to that report, 34% of the families surveyed indicated that their loved one had experienced moderate or severe pain in the last week of life. Dr. Susan Tolle, the survey’s principal investigator, told the media that pain control in Oregon “is a significant problem.” “As much as we bragged about Oregon being a leader in the medical use of morphine, we still have plenty of work to do, and I don’t want anyone to think we’re all done,” Tolle explained.
Regarding logistical problems, 52% of the family members said that their loved one was transferred from one place to another at least once during the last month of life. While that would include moving the patient to the place he or she wanted to die, like home, many family members said that the move was poorly coordinated and very stressful. “There was a lot of frustration with multiple doctors,” said one relative. “Her care suffered because no one was really in charge.”
The Report Card also indicated that, while a third (34%) of the patients were in hospice programs, one-fifth had less that three visits from hospice workers before they died – which is in line with the national experience of terminally-ill patients being referred to hospice often too late to really benefit from that type of specialized care.
But, overall, Dr. Patrick Dunn, head of the Task Force to Improve the Care of Terminally-Ill Oregonians, sees the report as being an important tool. “It helps to answer a number of questions with regard to the physician-assisted suicide debate and where we are with handling pain and suffering issues,” he said. “We can use that to make additional improvements in end-of-life care.”
Dr. Gregory Hamliton, head of Oregon’s Physicians for Compassionate Care, an organization which opposes physician-assisted suicide, stated he welcomed the Report Card’s balanced view of Oregon’s end-of-life care. “I think this self-congratulatory horn-blowing about how good palliative care is in Oregon – I’m not hearing that anywhere else than in Oregon,” he explained. “We can provide much better pain and palliative care than is taking place.” [Barnett, “Many die in pain, survey finds,” The Oregonian, 6/30/99]
Fear of pain may be worse than actual pain
Researchers from Britain’s Oxford University and from Canada have found that the actual experience of pain is subjectively distinct from the anticipatory fear and anxiety caused by the threat of pain. “One knows the situation where one clings to the dentist chair in anticipation of pain and probably because of that finds the pain subsequently gets more intense than if they relaxed,” lead researcher Dr. Alexander Ploghaus said.
Twelve volunteers agreed to be strapped to a machine that would almost burn their hands, produce a warm feeling, or nothing at all. Each episode was preceded by a distinctive color light, one for the burn threat, one for the warm feeling, and another for no heat. The volunteers rapidly associated a particular color light with pain. Brain MRI scans were able to locate the parts of the brain which are activated when an individual is anticipating pain and when the pain actually occurs. Those areas are close but distinct parts of the brain. “The area that has been involved in anticipation of pain,” according to Ploghaus, “is an area that is believed to be involved in ‘gut feeling’ decisions.”
Ploghaus’ findings may help to prove that the fear of pain is often worse than the pain itself and will help researchers to develop ways to reduce anticipatory pain anxiety in patients with chronic pain. [Ploghaus et al., “Dissociating Pain from Its Anticipation in the Human Brain,” Science, 6/18/99:1979-1981; New York Times, 6/22/99]
British doctors to have final say over patients’ lives
The British Medical Association (BMA) has released new guidelines for the withholding and withdrawal of medical treatment from patients, guidelines which go beyond what has been considered legally and ethically acceptable into new ground not yet tested in court. Included in that new ground is the withholding and withdrawal of tube feeding and hydration, without specific court approval, from patients with strokes, Alzheimer’s disease, cancer, as well as babies born with abnormalities. [London Telegraph, 6/24/99]
According to the BMA’s press release, “The main focus of the new guidance is decisions about patients who are likely to live for weeks, months, or possibly years, if treatment is provided but who, without treatment, will or may die earlier. It covers patients of all ages.” “Doctors should not routinely be obliged to seek court approval,” the official statement read, “before withdrawing artificial nutrition and hydration from patients with no prospect of recovery but should seek an independent review by a senior clinician from outside the treatment team.”
Life prolonging treatment, for the BMA, includes “cardiopulmonary resuscitation, artificial ventilation, specialized treatments such as chemotherapy or dialysis, antibiotics, and artificial nutrition and hydration.” [BMA Press Release, 6/23/99]
The cornerstone of the BMA “futile care” guidelines is the premise that doctors, not family members or designated health care decision-makers, have the ultimate say as to whether or not patients receive treatment:
“There is a widely held misconception that the next of kin may give, or withhold consent on behalf of an adult patient who lacks the capacity to make or communicate decisions. In fact, no such legal power is given to the next of kin or to those with enduring power of attorney. Decisions about whether to provide, withhold or withdraw treatment are the responsibility of the treating doctor with the advice of the rest of the health care team and with reference to the courts in particularly contentious, difficult or disputed cases” [BMA, Press Release, 6/23/99]
The BMA policy holds that, while it would be preferable that the parents of an ill child or infant agreed with the doctor regarding the child’s treatment, parental approval is not required. According to the guidelines:
“Those with parental responsibility for a baby or young child are legally and morally entitled to give or withhold consent to treatment. Their decisions will usually be determinative unless they conflict seriously with the interpretation of those providing care about the child’s best interest. [BMA, “Withholding and Withdrawing Life-Prolonging Medical Treatment,” Part 3, Sec. 15.1; emphasis added]
Dr. Michael Wilks, head of the BMA’s ethics committee, told The Times (London), “This document is not about euthanasia, it is not a charter or a document about intentionally ending a life.” “What this document is about,” he added, “is a clear assessment of the benefits of particular treatment and whether that treatment should be withdrawn or withheld.” [The Times, 6/24/99]
Interestingly, as reported in the previous Update, Dr. Wilks told reporters last January, “We feel doctors withholding nutrition or hydration are outside the law even though their intentions were no doubt made in the best interest of the patient as they saw it.” He made that comment in response to the news that police and health officials were conducting investigations into what was being called the “backdoor euthanasia” deaths of over 60 patients who had died slow deaths from dehydration. [The Times, 1/28/99]
Only a few months later, Dr. Wilks was again quoted in the press, but this time he limited the provision of food and fluids to oral nutrition and hydration. “In previous advice,” Dr. Wilks said, “we have said that oral nutrition and hydration are part of basic care rather than treatment and should never be withdrawn. That is, to us, fundamental.” [The Times, 3/26/99; see also Update, 1-3/99]
Dr. Michael Irwin, vice-chairman of England’s Voluntary Euthanasia Society, also praised the guidelines. “These guidelines are an essential step forward,” he said. “We especially welcome the emphasis that artificial food and fluid, as medical treatment, may also be withdrawn after careful and sensitive consultation with family.” [VES Press Release, 6/23/99]
According to Dr. Raanan Gillon, a physician and professor of medical ethics at London’s Imperial College who co-authored the guidelines, “Just staying alive is no good unless it is a means to an end of a flourishing life.” “If not,” he explained, “then it is normally reasonable to withdraw… The intent is not to kill but to allow someone to die with compassion.” [The Times, 6/24/99]
But a group called “SOS-NHS Patients in Danger” – comprised of bereaved relatives of non terminally-ill patients who died after food and fluids had been withheld or withdrawn by doctors’ orders – held a peaceful demonstration outside of BMA headquarters to oppose the guidelines. “With more relatives challenging the medical professionals, the BMA has recognized the dangers facing their members who have become careless and callous in their culling but have so far escaped prosecution,” a spokesman said. “We believe the true agenda behind these BMA guidelines is to legitimize what is taking place illegally in our NHS [National Health Service] hospitals.” [The Times, 6/24/99]
Many see the guidelines as a dangerous path that would encourage the country’s NHS managers to cut national health care costs by having patients die sooner rather than later. [London Telegraph, 6/24/99] According to Dr. Peggy Norris, head of Britain’s anti-euthanasia group ALERT, the BMA “is confusing the discontinuation of ineffective treatment with the practice of taking patients’ lives.” “You cannot deny water and food to patients: these are fundamental to life,” she added. “It is tantamount to killing them.” [Zenit, 6/27/99]
Mother loses battle over disabled son’s care
In a court case – which, no doubt, captured the attention of the drafters of the BMA’s futile care guidelines – a mother was unsuccessful in her attempt to have Britain’s High Court rule that doctors could not refuse her disabled son treatment which could save his life. The case centered on a dispute between Carol Glass, 37, and doctors at St. Mary’s Hospital in Portsmouth over whether her 12-year-old son, David, should receive treatment for breathing difficulties. David was born with hydrocephalus and is blind, with severe learning disabilities and spastic quadriplegia.
David had been hospitalized in July 1998, at which time he spent 23 days on a ventilator before being released to go home. He was again admitted in October 1998, but, this time, doctors decided not to treat his breathing difficulties. Instead, they gave the boy a low dose of diamorphine and told the family that David was dying and that he should be allowed to “die with dignity.” David’s mother argued that the physicians at St. Mary’s Hospital had given David diamorphine unlawfully and against her wishes. She said that the drug could depress her son’s breathing and actually bring on his death.
According to the hospital staff’s court testimony, 15 members of David’s family went to the hospital to “resuscitate” him by “blowing raspberries in his ears, banging his chest, and rubbing his legs.” When doctors tried to stop them, a “fracas” broke out. One of his relatives pulled David out of bed to get him to breathe. David was released to go home with his family. The hospital then informed the family that in the future it will no longer treat David. Instead, he will be referred to another facility.
In her petition to the High Court, Mrs. Glass asked the judge to rule that, when the patient is a child, doctors cannot unilaterally decide to provide or withhold treatment against the parents’ wishes without first seeking the court’s permission. But the judge refused, saying that any such ruling could “unnecessarily restrict the proper treatment by the doctors in an ongoing and developing matter.” [British Medical Journal, 5/1/99; Daily Telegraph, 4/22/99, 4/23/99]
In a column critical of both the hospital and the court, British columnist Dominic Lawson pointed to two key facts of this case. First, David was not dying as the doctors predicted. He went home and “recovered, and when a representative of the Official Solicitor recently visited the child’s home, he found him sitting up in bed laughing and smiling, surrounded by his sisters. He was now being taken out to shops and parks every day….”
Second, while the judge said that “there are some situations that have been left to the good sense and judgment of the clinicians,” not all doctors (clinicians) really have the patient’s best interest at heart. “Perhaps,” Lawson wrote, “it was difficult for the pediatricians treating David Glass to see the value of his life. Perhaps they could not see the point of an existence with so many limitations. Perhaps they subjected David Glass to a cost-benefit analysis, and wondered how much more usefully they could fill the hospital bed that his twisted frame occupied. Thus it is that the medical profession at the end of the 20th century conspires – from the best of motives – against the very weakest.” [Lawson, “The death of medicine,” Sunday Telegraph, 4/25/99]
British doctor acquitted of murdering patient
Dr. David Moor, 52, has been cleared of murdering cancer patient George Liddell, 85. Moor had been arrested after he told reporters that he helped as many as 300 patients to die and then described the most recent patient he helped to die as having bowel cancer. Since that description fit Liddell, police stopped his scheduled cremation and ordered tests to determine the cause of death. The results clearly indicated that Liddell died from an overdose of morphine. Reportedly, Moor, who had visited Liddell only twice, told an interviewer that, when he helped patients die, he would “go in with a fairly high dose of diamorphine.” He acknowledged that he was probably breaking the law. [The Times, 4/16/99; see also Update, 4-6/98 and Update, 11-12/98]
But during the trial, Moor claimed to be innocent of Liddell’s murder. He told the jury, “I have never set out to kill anybody willy-nilly. But I have certainly sought to ease the discomfort and distress and give them a pain-free and discomfort-free death. [The Express, 4/30/99] It took the jury only slightly over one hour to unanimously acquit Moor, accepting his claim that he never intended to kill Liddell, just end his suffering. [London Telegraph, 5/12/99]
Euthanasia doctor opens mobile clinic
Dr. Philip Nitschke, often referred to as Australia’s Dr. Death, held the first ever three-day Euthanasia Advisory Clinic in Melbourne. He claims to have seen 12 patients; mostly cancer patients over the age of 60. He also says that he only dispensed free information and advice, including information on lethal drugs and ways to obtain them. But everything about the clinic is cloaked in secrecy: the names of his clientele and the location of his “underground” clinic. [The Age, 4/28/99; Herald Sun, 4/27/99 ]
Nitschke plans to return to Melbourne with his mobile clinic two more times this year, and will travel to Sydney, Perth, and Brisbane as well. Apparently, funds for the proposed clinics are low, so Nitschke has sent out an appeal for money over the “Right to Die” e-mail list server. But money isn’t his only problem. His clinics have been condemned by the federal health minister, the premier of Victoria, and the president of the Australian Medical Association. The Medical Practitioners Board of Victoria is seeking to remove him from the physician registry. [Nitschke, 5/2/99]
Nitschke, of course, has been in the euthanasia spotlight before. He was responsible for the four euthanasia deaths under the now overturned Northern Territory euthanasia law. He also developed a computer program which would kill patients by delivering lethal drugs through an intravenous line. His next challenge is to create a suicide pill composed of easily accessible ingredients which are “unpoliceable.” [The Australian, 5/25/99]
Supreme Court to hear Latimer appeal
The Canadian Supreme Court has agreed to hear the appeal filed by Robert Latimer, the Saskatchewan farmer who was convicted twice of second-degree murder in the 1993 death of his disabled 12-year-old daughter, Tracy.
Latimer, 45, had placed Tracy, who had cerebral palsy, in the cab of his truck and gassed her to death by hooking up tubes and pipes to the truck’s exhaust system. Court records show that he planned Tracy’s death, deciding to gas her after rejecting earlier plans to shoot her in the head and set her body on fire. Latimer claimed that he simply wanted to end her suffering. (See Update, 11-12/98.)
Latimer’s first conviction in 1994 was dismissed on a technicality. In the second conviction, the judge, instead of giving Latimer the mandatory minimum 10-year sentence, granted him a “constitutional exemption” and reduced his prison time to only two years less one day, with the second year to be served at home. The main question before the Supreme Court will be whether the constitution allows for such exemptions from mandatory sentences. [National Post, 5/7/99; Reuters, 5/5/99, 5/6/99]