Update 021: Volume 14, Number 2 (2000)

Maine targeted to promote national right-to-die agenda

This November Maine will be the only state in the U.S. to have an assisted-suicide measure on the ballot. The measure — Maine’s “Death with Dignity Act,” the same sugar-coated title as Oregon’s assisted-suicide law — will be the very first question posed to Maine voters: “Should a terminally ill adult who is of sound mind be allowed to ask for and receive a doctor’s help to die?”

Depending upon how Maine’s voters respond to that deceptively worded question will determine whether Maine joins California, Washington, Michigan and numerous other state legislatures in rejecting the intentional ending of patients’ lives or whether Maine follows Oregon in sanctioning such killing.

While proponents of the assisted-suicide referendum claim that their campaign is a home-grown, grassroots state effort and that Mainers “call the shots,” official campaign finance reports indicate that, as of 6/1/00, 95% of the $606,018 raised by Mainers for Death with Dignity came from out-of-state sources such as the national Hemlock Society, its various state chapters, Oregon Right to Die, and individual supporters in other states.

In contrast, 99% of the $629,337 raised by the two groups opposing the referendum, Maine Citizens Against the Dangers of Physician Assisted Suicide and the Coalition for the Compassionate Care of the Dying, came from Maine contributors only. [Portland Press Herald, 7/16/00]

According to Kandyce Powell of the Maine Hospice Council, “Out-of-state agendas and perspectives are driving this issue in Maine.” Douglas Hodgkin, a political science professor at Lewiston’s Bates College, agreed. “We’re getting a national battle fought out in the state of Maine,” he said, and Mainers “should be aware of the possibility that somebody could be hijacking the process from the outside.”

Another political scientist, Tony Corrado from Colby College in Waterville, ME, voiced similar concerns. “I think one of the real problems we’ve seen with referendum campaigns in the last decade… is that outside interests are using the initiative process to promote their agenda.” According to Corrado, assisted suicide “is not really an issue that has been an issue of (widespread) local concern.” Often, he added, the initiative process “is no longer being used as a bottom-up process” for local grassroots issues but instead as “a top-down process” propelled by national special interest groups.

But Mainers for Death with Dignity spokesman Tom LaPoint disagreed. “I think this campaign has the face of Maine all over it,” he said. Kate Roberts, the group’s director of operations, concurred. “The whole process of getting on the ballot,” she said, “was entirely driven by Maine people.” [Portland Press Herald, 7/12/00; UPI, 7/12/00]

Maine’s health care delivery crisis

Maine’s assisted suicide referendum vote comes at a time when the health care delivery system is “inefficient, unreasonably complicated and unfair,” according to the Year 2000 Blue Ribbon Commission on Health Care, a five-member commission appointed by Maine’s governor, Angus King. In its recently released report, the commission concluded that many of Maine’s citizens cannot get the proper type and quality of care that they need, in spite of the fact that almost $5 billion is being spent annually in Maine on health care. This means that approximately $3,500 per person is currently going for medical care and treatment costs each year, and that figure is expected to almost double by 2009. [Portland Herald Press, 9/9/00, 9/12/00; Bangor Daily News, 9/12/00; AP, 9/9/00]

Along with higher health care costs comes higher health insurance rates. A recent telephone survey, sponsored by the Robert Wood Johnson Foundation and the Maine Bureau of Medical Services, found that increasing numbers of Maine’s families and small businesses can no longer afford insurance coverage. Moreover, this survey of 3,059 households revealed that the lack of health insurance is becoming a “major middle-class problem,” with the majority of those without insurance being employed. “Being uninsured is not a matter of income,” explained Warren Kessler, head of the MaineHealth Access Project. “There are a lot of middle-class people — and there are getting to be a lot of upper middle-class people — that are without health insurance, and we’re beginning to see those numbers.” [Portland Press Herald, 8/20/00]

Another survey sent to 4,000 of Maine’s small businesses found that 32% do not offer health care insurance benefits to employees. This is especially alarming considering that 96% of Maine’s businesses have less than 50 employees and comprise about half of the state’s workforce. Of those employers who do offer health insurance benefits, 64% indicated that they intend to reduce coverage if rates increase, 29% raised the deductibles workers would have to pay, 14% shifted some of the premium costs to employees, and 16% delayed scheduled wage increases for workers due to insurance costs. [Bangor Daily News, 8/17/00; AP, 8/17/00]

Projections are that insurance premiums will increase significantly in the near future. Anthem Blue Cross, for example, has already said that it wants to increase individual policy premiums by 23%. The situation has prompted one commentator to write, “[T]he prospect for a catastrophic health insurance meltdown in Maine looms large.” [Kennebec Journal, 9/15/00]

Pressure to die

For many Mainers, health care has become a luxury few can afford. The results of a telephone poll released earlier this year showed that 6 out of 10 people without health insurance did not seek needed medical care because of the cost, and, in 1 out of 5 households with medical insurance, members did not obtain needed treatment for the same reason, usually due to high deductibles. [Bangor Daily News, 6/1/00; Portland Press Herald, 5/31/00]

If assisted suicide were to become legal in Maine, it could very easily become the only “medical treatment” many patients could afford. As we have seen in Oregon, health insurance providers, including the state’s Medicaid program, are more than happy to cover the cost of a lethal prescription, which usually runs less than $75. That’s a pittance compared to hospital, nursing home, home health care, or hospice costs. And given the propensity of Mainers to forego needed care for financial reasons, adding assisted suicide to the state’s highly troubled health care delivery system would likely place subtle and not so subtle pressures on vulnerable patients to opt for an early death.

Painkilling drugs do not hasten death

Prompted by recent concerns within the medical profession and the general public that the use of opioid painkillers can hasten death, British researchers, Drs. Andrew Thorns and Nigel Sykes, conducted a retrospective case study of 238 patients who died at St. Christopher’s Hospice in London and the pattern of opioid use during the last week of those patients’ lives.

The results of the study, published in the British medical journal The Lancet, found that patients given higher doses of opioids, such as morphine, lived as long as other patients who had not received increased doses of opioids. “Comparison of the patients who received a marked increase in opioids at the end of life with those who received no increase,” researchers wrote, “showed no significant difference in survival from admission, frequency of unexpected death, or description of death.” “The reason for the increase was recorded in all cases and the deterioration in condition was noted before the change in dose,” they explained. [Thorns & Sykes, “Opioid use in the last week of life and implications for end-of-life decision-making,” The Lancet, 7/29/00, pp. 398-399. Hereafter cited as “Opioid use.”]

Euthanasia and double effect

Right-to-die advocates in both the U.S. and U.K. have often tried to blur the distinction between a doctor intentionally giving a patient increased doses of morphine to hasten that patient’s death (euthanasia) and a physician giving an increased dose to control the patient’s painand symptoms with the unintended side-effect being the possible shortening of life (doctrine of double effect). By eliminating this long-held ethical distinction, right-to-die proponents hope to gain legal, medical, and public acceptance of euthanasia as simply another palliative care option.

The doctrine of double effect (often referred to in the U.S. as the principle of double effect) applies to actions which may have both good and bad effects and holds that four conditions must be met in order for an action, in this case pain treatment, to be ethically justified:

The act (treatment) itself must be inherently good or neutral;

Only the good effect of the act (pain and symptom control) — not the bad effect (death) — must be intended;

The good effect must not be attained by the bad effect;

There must be a sufficiently weighty reason to risk the possible bad effect.

If even one of the four conditions is not met, then the treatment is not ethically justified. [Fagothey, Right and Reason, 2nd ed., 1959, p. 160; Hooyman et al., “Relief from Pain and the Double Effect,” JAMA, 10/14/92, pp. 1857-1858]

Researchers Thorns and Sykes, in addition to studying whether opioid use hastened death, examined all 238 cases to ascertain how often the patients’ opioid treatment entailed real concern that death could possibly occur, implicating the doctrine of double effect (DDE) “The case-note review,” they found, “did not show any cases in which DDE could have been implicated.” [“Opioid use,” p. 398]

“The DDE may be a useful principle that can offer reassurance to health-care professionals facing difficult treatment decisions,” they explained, “but it must be distinguished from euthanasia and its role should not be exaggerated.” “Any physician,” they warned, “caring for the dying who feels the need to invoke the DDE or who is having to increase opioid doses by greater than amounts shown here would be advised to consult a specialist palliative-care team.” [“Opioid use,” p. 399]

Findings support experience

Thorns’ and Sykes’ finding that proper use of morphine and other opioids does not hasten death supports what other specialists have experienced in clinical practice. Cancer specialist Dr. Balfour Mount, who heads the palliative care department at Montreal’s McGill University, firmly asserts that it is “a common misunderstanding that patients die because of high doses of morphine needed to control pain.”

According to Dr. Joanne Lynn of George Washington University School of Medicine, something strange happens when the dosage of morphine is gradually increased to keep up with the pain: patients become tolerant of the drug’s effect on respiration. As a result, she said, even if the patient ends up taking high doses that would kill anyone not on morphine, the painkiller has little effect on the patient’s ability to breathe.

Dr. Kathleen Foley, from Memorial Sloan-Kettering Cancer Center’s palliative care department, has written extensively on the subject of pain management. She told the New York Times that she routinely sees patients who are taking incredibly high doses of morphine without adversely affecting their breathing. “They’re taking 1,000 milligrams of morphine a day, or 2,000 milligrams a day, and walking around,” Foley said, adding that the standard daily dose to relieve cancer pain is around 200 to 400 milligrams. [Kolata, “When Morphine Fails to Kill,” New York Times, 7/23/97]

European patent denied for human euthanasia drug use

Responding to growing protests in Germany, the European Patent Office (EPO) in Munich has amended a previously granted patent for a “euthanasia cocktail,” limiting the drug composition’s use to animals and explicitly excluding use on humans. A temporary European patent for the euthanasia compound had been granted to Michigan State University (MSU) in 1996, but when it was discovered that MSU’s patent application did not limit use to “lower mammals,” protests were issued by the German CDU-CSU Christian Democratic Unions, the Hospice Foundation of Dortmund, and Hoechst, the German drug company which had funded MSU’s research and development of the euthanasia compound. [Independent Newspapers, 5/22/00; Reuters, 5/23/00; ZENIT News Agency, 5/24/00]

Earlier MSU refused to change the wording on its patent application, stating that there was “no intent to violate the laws of any country in reference to use in humans.” “Nevertheless,” MSU researchers wrote, “if it should ever become legal to use the compositions in human beings, the patent claims should encompass the use of the compositions of the present invention for this purpose.” (See Update,12/96 and Update, 1-2/97)

The EPO’s action on MSU’s patent came just weeks after the European Parliament called for better EPO oversight and formally denounced an EPO patent allowing human embryo cloning. [Environment News Service, 3/20/00]

Euthanasia gurus meet to discuss ghoulish ways to die

According to Derek Humphry, author of the suicide manual Final Exit, and John Hofsess, founder of the Right-to-Die Society of Canada, people can commit suicide without a doctor’s help by using helium canisters, plastic bags, tubing, and velcro strips. These items, Hofsess said, can provide a “first-class death.”

That was the message given to the estimated 400 members of the Hemlock Society and the World Federation of Right-to-Die Societies who had gathered in Boston on September 1-3, 2000, for just such information.

Speaking about the benefits of a helium death, Humphry told the audience that if helium is inhaled within an airtight plastic bag, death will result in only 5 minutes. “It doesn’t involve any lawbreaking,” he explained. Humphry, who actually demonstrates this method in his new video version of Final Exit, told those gathered that helium deaths would benefit anyone wishing to commit suicide. “A certain amount of people commit suicide every year for whatever awful reason,” he said. “They may use this, but if they don’t use this, they might use guns or knives or jump off a bridge. We don’t want them to do that.”

Hofsess, who has been referred to as a “cutting-edge” researcher of “new self-deliverance technology,” presented a number of deadly new ways to end it all. The most primitive is his Exit Bag method, an over-sized clear plastic bag with padded velcro fasteners that seal off the bag around the person’s neck. Hofsess readily admitted that this method caused people to “experience unpleasant symptoms.” To counter those distressful symptoms, Hofsess recommended using an air pump connected to the bag that would supply oxygen only until the suicidal person loses consciousness from a drug overdose. He also endorsed the helium method described by Humphry. But he seemed most proud of his “debreather” method, which uses a modified piece of diving equipment designed to gradually remove oxygen from the Exit Bag. Hofsess said that the debreather was still being refined and that, of all the methods, it would be the most expensive, costing about $350.

Russel Ogden, a Canadian right-to-die researcher, told the group that he has documented a total of 57 “new technology” deaths in the U.S. Among those, 10 used the debreather and 26 employed inert gases such as helium.

Australia’s Dr. Death, Philip Nitschke, also presented his latest suffocation method: a low-oxygen tent into which inert gases can be pumped. This allows 2 people to die together, a “double exit,” he said. Nitschke also presented his plan to launch a “death ship” that he hopes will allow him to circumvent local laws by euthanizing people from around the world in international waters. Many within the death movement, including Humphry, say they oppose the plan. [Globe & Mail, 9/4/00; AP, 9/2/00; New York Post, 8/20/00]

11 disability groups oppose assisted suicide;
Not Dead Yet protests death conference

At its April 2000 board meeting, the Association of Programs for Rural Independent Living (APRIL) adopted a resolution opposing the legalization of assisted suicide. In so doing, APRIL became the eleventh national disability rights organization to formally oppose assisted death. The other groups are: American Disabled for Attendant Programs Today (ADAPT), Disability Rights Education and Defense Fund, Justice For All, National Council on Disability, National Council on Independent Living, National Spinal Cord Injury Association, Not Dead Yet, TASH, World Association of Persons with Disabilities, and the World Institute on Disability.

While it is often very difficult for people with disabilities to travel long distances, individual members of some of these national groups journeyed to Boston to join Not Dead Yet in protesting the Hemlock Society/World Federation of Right-to-Die Societies conference in early September (see above). “We’ve come to Boston to call attention to the fact that we’re opposed to what’s going on here,” explained Stephen Drake, Not Dead Yet’s research analyst. “The Hemlock Society wants the so-called right to assisted suicides (for the terminally ill). It’s an outright lie,” Drake told reporters. “The world federation wants broader application for people with disabilities, for (disabled) infants and people with dementia,” he said.

After protesters successfully captured the media’s attention and kept it for days, various euthanasia proponents tried to do damage control by denying the protesters’ claims. “The last thing we want is for people to die,” one conference attendee from London told reporters. Hemlock vice president Clark Trammell, told the press, “We’ve offered the hand of friendship and the opportunity to correct the situation, but they refuse to take advantage of it.” When asked about Trammell’s statement, Drake replied, “Some of us have been protesting assisted suicide since 1985 and yesterday they come to say we should talk! Excuse me if I’m suspicious of their timing.” [Boston Globe, 9/4/00; Boston Herald, 9/4/00]

Colorado appeals court upholds assisted-suicide ban

The Colorado Court of Appeals has upheld the state’s law banning assisted suicide. The law was challenged by 82 year-old Robert Sanderson, a former state judge who argued that the law violated his religious freedom. This is the first constitutional challenge against an assisted-suicide ban in the country based on the freedom of religion guarantee. Sanderson wanted a court declaratory judgment so that neither his wife nor the doctor who would euthanize him sometime in the future would face criminal charges. Sanderson has no current health problems.

Before a lower court, Sanderson had argued that, since he doesn’t believe in “the sanctity of human life as such,” he is not bound by any religious dogma that is opposed to euthanasia. Citing the U.S. Constitution’s First Amendment freedom of religion provision, Sanderson said that he believes “that God, or nature, intended that the free will of man be exercised in all circumstances according to his own best judgment with due consideration for others.” “Such belief,” he claimed, “includes man’s right to delegate power to another person to authorize euthanasia by an attending physician.” The lower court dismissed Sanderson’s case, ruling that he had no legal claim. Sanderson appealed, but the Court of Appeals upheld the lower court’s decision.

According to the appellate court, the state’s law prohibiting assisted suicide is neutral regarding religion. Further, the court said, neither the First Amendment nor an individual’s personal religious beliefs exempt that person from obeying duly enacted laws regarding matters regulated by the government, including both assisted suicide and euthanasia. The appeals court also ruled that Sanderson cannot request an exemption from the assisted suicide law for others — namely his wife and doctor — based on his own religious beliefs.

The Hemlock Society Foundation Legal Defense Fund is financially supporting Sanderson’s case and obtained attorney Richard Borchers, also a former judge, to handle the appeal pro bono. Both Sanderson and the Hemlock Society plan to appeal the case to the Colorado Supreme Court. [Rocky Mountain News, 6/9/00; Timelines (Hemlock Society’s newsletter), Summer 2000, p. 5]

AARP reports findings on death and dying

A nationwide survey of people’s attitudes regarding death and dying, sponsored by the American Association of Retired Persons (AARP), found that “older people are less supportive of physician-assisted suicide and voluntary active euthanasia than younger people,” while “younger people are more afraid of dying and being in pain at the end of life than older people.”

The survey, reported in AARP’s magazine, Modern Maturity, polled 1,815 Americans age 45 and over to determine the “impact that age, gender, and socioeconomic status have on people’s fears and beliefs about end-of-life care, treatments, and methods of dying.” The younger respondents were significantly more afraid of having their deaths prolonged by “artificial” life-support and of “depleting the family’s finances” to pay for their end-of-life care.

“People adapt over a lifetime to the ideas that there is such a thing as illness and disability, and that they can adjust to being ill or disabled and still find pleasure in life,” said senior research scientist Dr. Powell Lawton from the Polisher Institute of the Philadelphia Geriatric Center. “There’s a process by which people say to themselves, I’m willing to endure more than I was willing to endure as a younger person,” he explained.

Psychotherapist George Bouklas, Ph.D., said that practicality is the reason that older folks are less afraid of spending the family’s savings for health care. “When people are younger, this is more of an intellectual exercise, an expression of fealty to the family” not to want to financially burden the family. “As people get older and have health-care needs, they can’t worry about money,” he added. “They need to be tended to.”

According to Lawton, the finding that older persons are less supportive of euthanasia and assisted suicide is consistent with the fact that they are less afraid of death and pain. “People in the very later age groups especially have already had some trying times to deal with, and they’ve developed new frames of reference by which to judge their lives,” he explained. “On the other hand, it’s extremely difficult for people in excellent health to imagine incompetence coming upon them.”

The survey also revealed that 67 percent of those polled think that doctors can accurately predict how long a patient will live, despite the fact that previous AARP studies as well as those conducted by other organizations have found that doctors actually do a poor job estimating a patient’s life expectancy. Survey authors concluded, “Not surprisingly, those who believe doctors can accurately predict death are more likely to support physician-assisted suicide, voluntary active euthanasia, and the use of controlled substances to manage pain at the end of life.” [G. Redfore, “Their Final Answers: An Exclusive Modern Maturity Survey,” Modern Maturity, September-October 2000]

World Focus

Great Britain

High court judge rules boy must be left to die

A High Court Family Division judge has ruled that a disabled 19-month-old child should be left to die the next time he needs intensive care treatment. The judge rejected the parents’ pleas to require that doctors at Great Ormond Street Hospital in London provide their son with the necessary treatment to keep him alive. The boy, referred to as “I” by the court, requires oxygen 24 hours a day and close supervision and care as a result of an irreversible lung condition and a brain abnormality. He was born prematurely and spent his first 8 months in the hospital before his parents took over his care at home. By all accounts, his parents have been highly devoted and excellent caregivers, a fact noted by the judge in his ruling. Most of the child’s hospital visits have been as an outpatient, needing treatment for breathing problems. However, last February, the child went into respiratory failure and required intensive care. In June, when the boy again needed intensive treatment, doctors said that the boy was “very ill” and rejected the parents’ request that everything necessary to save his life be done. The London hospital trust initiated court proceeding, and the child was made of ward of the court.

The judge essentially dismissed the medical staff’s testimony that the boy had shown improvement over the last 10 months. His language therapist testified that the child showed signs of acquiring a vocabulary and the ability to wave “bye-bye.” He added that the boy had a “delightful smile,” indicating that he experienced pleasure. His nurse substantiated that observation: “He responds to his parents with smiles of recognition.” For the judge, the crux of the case rested on the doctors’ bleak prognosis for the child — futile care for a doomed patient. According to patient advocate Julia Quenzler of SOS-NHS Patients in Danger, “This incredibly irresponsible judge has created a monstrous precedent which must be reversed immediately for the protection of all vulnerable patients whose lives are now ever more at risk from doctors who kill and then hide behind the medical profession’s code of secrecy.” [London Times, 7/13/00; Daily Express, 7/13/00; Independent, 7/13/00]

Disabled boy’s relatives convicted for saving his life

Two aunts and an uncle of 13 year-old David Glass were convicted of assaulting two doctors and jailed for actions they took to save their nephew’s life. In 1998, David — who was born with hydrocephalus and cerebral palsy — was hospitalized, but doctors refused to treat his breathing difficulties caused by a chest infection. Instead, they administered intravenous doses of the painkiller diamorphine, a drug which would have eventually killed him. The doctors then told the family that David was dying and that he should be allowed to “die with dignity.” When family members returned to the hospital to disconnect the intravenous line and to revive him, doctors tried to stop them. That’s when the “fracas” broke out. David was released from the hospital that evening. Subsequently, David’s mother petitioned the court to rule that, in the case of a child, doctors may not unilaterally decide to provide or withhold treatment against the parents’ wishes without first seeking the court’s permission. The judge refused, ruling that any such requirement would “unnecessarily restrict the proper treatment by the doctors in an ongoing and developing matter.” (See Update,4-6/99)

Almost two years later, David is “very well” and living at home. But that fact did little to help his aunts and uncle, who were tried and convicted of assaulting two doctors and imprisoned for 9 to 12 months. Because of the negative publicity this case caused, the court decided to “show mercy” and eventually reduced their sentences to 4 to 6 months. According to a London Daily Telegraph editorial, “It is difficult not to conclude that the intervention by his aunts and uncle saved his is life. It is a warped idea of ‘intensive care’ that tries to induce avoidable death.” (Emphasis added.)[BBC News, 6/7/00, 7/14/00; Daily Telegraph, 6/6/00, 7/15/00, 7/17/00; London Times, 6/8/00]

The Netherlands

Child euthanasia proposal amended

The Dutch government has once again withdrawn a highly controversial provision in their proposal to formally legalize euthanasia. The provision would have allowed children aged 12 to 16 to request and receive euthanasia even without their parents’ consent. The newly amended provision still allows children to be euthanized, only now, the government claims, parental consent would be required. When the euthanasia proposal was first announced more than a year ago, criticism from around the world caused the prime minister to withdraw the provision. Later the health and justice ministers reinstated it, only to incur more criticism — hence the parental consent sham. A spokesman for the Dutch Voluntary Euthanasia Society confirmed that, once the new law is passed, euthanasia will be a “basic human right” and available to all. [AP, 7/15/00; CNS News, 7/14/00]

Research in Review

Depressed patients less likely to follow doctors’ recommended course of treatment

Patients who are depressed are three times more likely to disregard their doctors’ instructions for recommended medical treatment than nondepressed patients. That was the finding of a comprehensive review of 25 studies of patients with cancer and other serious conditions.

Psychologists correlated patients’ treatment noncompliance with their anxiety and depression and found that the association between anxiety and noncompliance was small and not significant. But the relationship between depression and treatment noncompliance was found to be both substantial and significant. [DiMatteo et al., “Depression Is a Risk Factor for Noncompliance with Medical Treatment,” Archives of Internal Medicine, 7/24/00]

“The problem of noncompliance is quite large,” explained lead author Dr. Robin DiMatteo, professor of psychology at the University of California in Riverside, CA. “Overall, about 40 percent of people leave their doctor’s office and do not follow recommendations,” she said. “Four out of ever 10 doctors’ visits end up in non-adherence.” [HealthSCOUT, 7/25/00]

According to Dr. Walter F. Baile, head of psychiatry at the M.D. Andersen Cancer Center in Houston, TX, depression is the most common psychiatric disorder in cancer patients. Depression may adversely affect treatment effectiveness and the course of the illness. [Oncology.com News, 7/25/00] It has been estimated that approximately 25 to 40 percent of cancer patients, 40 to 60 percent of heart attack patients, and 10 to 27 percent of stroke patients suffer depression. [Detroit Free Press, 10/6/98]

Comment: The finding that depressed patients are three times more likely to ignore doctors’ treatment orders may shed new light on patients who request assisted suicide or euthanasia as a “last resort.” Given the fact that most depression goes unrecognized by doctors, patients who claim that prior treatment measures failed to control their pain and/or symptoms, may not be acknowledging their noncompliance with those treatment protocols because of depression.

Doctors urged to avoid feeding tubes & use less aggressive treatment for dementia patients

Two recent articles, published in major U.S. medical journals, have argued that elderly patients with advanced dementia should be considered terminally ill and treated differently than competent elderly patients.

The first article, written by Muriel R. Gillick, M.D., from Boston’s Hebrew Rehabilitation Center for the Aged, called for the withholding of tube feeding from patients with advanced dementia. Gillick argued that feeding tubes can cause more harm than good because patients often pull them out, causing the medical staff to put the patients in restraints. According to Gillick, tubes can bring on other problems as well, such as diarrhea, clogging of the tube, and infection. Moreover, she wrote, “nutritional status often does not improve with the use of feeding tubes,” and “if family members are unable to make a decision [to withhold tube feeding] and if there are no extenuating circumstances, the physician should assume that a person with advanced dementia would not want a gastrostomy tube.” Instead Gillick suggested that doctors “should take the initiative in promoting hand feeding,” even though advance dementia patients often have difficulty swallowing, and that “physicians, nursing homes, and hospitals adopt a policy of recommending that gastrostomy tubes not be used in patients with advanced dementia.” [Gillick, “Rethinking the Role of Tube Feeding in Patients with Advanced Dementia,” New England Journal of Medicine, 1/20/00; emphasis added]

The second article, a study published in the Journal of the American Medical Association (JAMA), presented data to support the authors’ contention that patients with advanced dementia are terminally ill and should not receive the same aggressive treatment offered to patients who are “cognitively intact.”

The study, conducted at only one New York hospital from 9/1/96 to 3/1/98, followed 216 patients ages 71 to 102 who were hospitalized for pneumonia or hip fractures. Of those patients, 98 were considered to be cognitively intact, while 118 were judged to have “end-stage dementia.” Researchers found that the advanced dementia patients — who had received the same routine and sometimes painful care for pneumonia or hip fractures as those without dementia— were 4 times more likely to die within six months than the cognitively intact patients with the same diagnoses. “These data,” researchers wrote, “suggest that advanced dementia is not viewed as a terminal diagnosis by physicians or families, perhaps because physicians and families may not be aware of the poor prognosis for these patients.” [Morrison and Siu, “Survival in End-Stage Dementia Following Acute Illness,” JAMA, 7/5/00, p 50]

Furthermore, researchers found “no evidence that palliative care was undertaken either in conjunction with or instead of life-prolonging measures for dementia patients.” [p. 50] There were no efforts to medicate these patients prior to painful tests or interventions, all of which can be frightening for dementia patients who can feel pain but do not understand what is being done to them. According to the study’s lead author, patients with dementia received less than half the amount of pain killers given to cognitively intact patients, probably because dementia patients could not communicate that they were in pain or that they needed pain medication. [New York Times, 7/5/00]

Proposed changes in the care of advanced dementia patients could profoundly affect millions of people in the U.S. diagnosed (or misdiagnosed) with varying stages of dementia. Alzheimer’s disease, which is the leading cause of dementia, currently affects more than 4 million American patients, a figure which is expected to increase to 6 million by 2010. [AP, 7/9/00; Reuters, 6/27/00]

Dementia often misdiagnosed

According to researchers at the University of South Carolina, doctors often confuse side-effects associated with common prescription and over-the-counter drugs with symptoms of dementia. This confusion puts many elderly patients at risk for being misdiagnosed as having age-related conditions such as Alzheimer’s disease.

Dementia-like drug side-effects are often found in elderly patients because their bodies retain the drugs longer and they usually take more of a variety of different drugs than the rest of the population. Prescription drugs for Parkinson’s disease, allergies, depression, migraine headaches, and irritable bowel syndrome, for example, can cause memory loss, confusion, blurred vision, disorientation, increased anxiety, and rapid breathing. Even non-prescription medication for colds, flu, and indigestion can produce these dementia-like symptoms.

Dr. Jacobo Mintzer, lead author of this study published in the Journal of the Royal Society of Medicine, said that the full scope and severity of drug reaction in the elderly is likely understated. “There is little published information on the complex combinations of drugs used in elderly people,” he explained. “Better understanding, assessment and management of the problem,” Mintzer urged, “is needed to avoid elderly patients being given inappropriate treatment.” [BBC News, 8/31/00; health news.co.uk, 9/1/00]

Comment: Given the recent calls to withhold tube-feeding and aggressive treatment from dementia patients (see previous article), elderly people misdiagnosed as demented due to drug side-effects could also be at risk for inappropriate nontreatment.

Drug errors common in nursing homes

Serious, sometimes deadly, and often preventable drug errors are common occurrences in nursing homes, according to a National Institute on Aging sponsored study published in the American Journal of Medicine (AJM).

The study, the largest of its kind in the U.S., monitored 2,916 residents in 18 Massachusetts nursing homes for a period of 1 year. Researchers identified 546 drug-related injuries and 188 potentially adverse drug events. Slightly more than one half of the 546 injuries were preventable. In one case, the drug error proved fatal. Thirty-one drug errors (6%) were life-threatening, 206 (38%) were serious, and 308 (56%) were significant.The more severe errors were more likely to be preventable. In 38 cases, the error caused the patient to be disabled; in 8 cases, the disability was permanent.

According to researchers, if their findings were applied to the 1.55 million residents in all U.S. nursing homes, approximately 350,000 adverse drug errors are occurring each year, and that, they wrote, is a conservative estimate. [Gurwitz et al., “Incidence and Preventability of Adverse Drug Events in Nursing Homes,” AJM, 8/1/00, pp. 87-94]

“The most striking thing,” explained lead researcher Dr. Jerry H. Gurwitz from Boston’s University of Massachusetts Medical School, “is we believe the number of events is very high, and most [are] deemed preventable.” Dr. Kenneth Barker, an Auburn University researcher who has studied drug errors for 40 years, substantiated Gurwitz claim. “There’s better control in a Campbell’s soup factory for making sure the right kind of soup gets into the right can than there is in the medication system,” he said. “We talk about patients lying there and waiting for their daily error.” [Reuters Health, 8/11/00; HealthSCOUT, 8/11/00].

News Notes

Assisted suicide advocate Dr. Timothy Quill has announced that he and the Rochester, NY, internal medicine physician group he heads will be leaving Genesee Hospital to move to Strong Memorial Hospital, the primary teaching hospital for the University of Rochester School of Medicine. According to Quill, his physician’s group is relocating to be part of the medical school’s new curriculum. He plans to use grants which he has obtained to create a new course in end-of-life care. [Rochester Democrat and Chronicle, 7/25/00]

“This is an important piece of learning that is ordinarily omitted in the education of doctors,” Quill said in an earlier university press release. “If doctors are not trained properly, then their patients may be deprived of effective pain management.” [Univ. of Rochester Medical Center Press Release, 6/5/00]

But the university hospital’s ability to provide effective pain control for terminally-ill patients may be in question. Strong Memorial announced plans to close its Pain Treatment Center on 9/1/00 because of low rate payments from managed care programs. “Reimbursement isn’t high enough to see the full spectrum of patients we’ve seen,” explained Dr. Denham Ward, head of the hospital’s anesthesiology department. [Rochester Democrat and Chronicle, 7/29/00]


Convicted felon Jack Kevorkian is too ill to be in prison, according to his lawyer, Mayer Morganroth. For the fifth time since Kevorkian has been in prison, Morganroth filed a motion requesting that his client be freed on bond pending the outcome of his conviction appeal. But Morganroth’s claims — that Kevorkian’s health is in peril from high blood pressure, increasing frailty, and being so cold that he has to wear a sweater — did little to convince Oakland County Circuit Court Judge Jessica Cooper to grant this latest motion. Judge Cooper, who in 1999 sentenced the death doc to 10 to 25 years, denied the motion, saying that she has no authority to grant the bail request. “I don’t know how many more ways the judges can say no,” commented Assistant Oakland County Prosecutor Anica Letica.

Morganroth claims that Kevorkian almost had a stroke. “He almost stroked out,” Morganroth said. “He was very close to it.” But Matt Davis, from the Department of Corrections, said that Kevorkian has access to medical care just like any other inmate. “Poor health is not a ‘get out of jail free card,’” Davis said. [AP, 8/25/00; Oakland Press, 8/23/00; Detroit Free Press, 8/25/00]

Apparently Kevorkian was well enough to write a rather long letter to none other than the U.S. Supreme Court, urging the justices to follow the lead of the Dutch and Colombian courts and proclaim “physician-assistance-in-dying” a “right of the people.” He argued that this right is guaranteed by the Ninth Amendment, which, according to Kevorkian, was added to the U.S. Constitution to protect “basic rights” not specifically mentioned in the Constitution or Bill of Rights. It’s highly doubtful that the Supreme Court justices will reply. [Kevorkian, Press Release, 8/31/00; Oakland Press, 9/1/00]


For the very first time, the World Health Organization (WHO) has released figures ranking the world’s health care systems. The “World Health Report 2000” measured overall spending and health care distribution in the 191 countries that are WHO members. The countries were then judged using five health care categories previously determined to be most important to residents of those nations, including overall level of health, fairness of health care distribution across different populations within the country, and equity of medical care responsiveness and financing among different groups.

According to the report, France ranked No. 1, with Italy, Spain, Austria, San Marino, Oman, Andorra, Malta, Japan, and Singapore making up the top 10.

The United States, however, ranked 37th despite the fact that it spends far more on health care than any other country. It lagged behind the leaders primarily because of the unequal distribution of medical care services and financing. The U.S. also demonstrated a higher degree of disparate life expectancy rates among different populations, an indication that a significant percentage of Americans are dying prematurely.

John M. Eisenberg, director of the federal Agency for Healthcare Research and Quality, called the WHO report “an important alarm for Americans to look at and realize how much better we can do.” [WHO, “The World Health Report 2000 — Health Systems: Improving Performance,” 6/20/00; Washington Post, 6/21/00; L.A. Times, 6/21/00]