Differing perspectives from thirteen years of experience in Oregon.
This piece first appeared in The Vermont Standard.
The sadness of a central Vermont couple’s tragedy nearly twenty years ago still lingers today. “They were vibrant and inspiring and incredible,” says a Woodstock acquaintance of the husband and wife, who married late in life. He was a retired Professor of English and a noted scholarly author, she had been a nurse and was an accomplished cellist, Julliard-trained. Devastating coincidence left them both afflicted with terminal, debilitating illnesses. The anguish and despair and isolation they might have felt as the weeks ticked by while their illnesses advanced can only be imagined. One January day, the woman called their pastor and asked him to stop by for a visit the following morning; he found them lifeless in their living room, with plastic bags over their heads.
“When I heard, I felt sad, very sad, but I had an almost instant recognition and respect for their choice,” a friend told the Rutland Herald days after the discovery, “they had been sick for several years with increasingly more gloomy diagnoses, life had become very difficult and painful for them.”
For the last ten years, various advocacy groups here have argued the merits and dangers of allowing physician-assisted suicide in the state. Last winter, legislation was introduced in the fifth consecutive biennium session of the General Assembly that, if passed, would permit Vermont physicians to prescribe or dispense lethal doses of medication to certain terminally ill patients who request them. Decades later “what-ifs” can’t change the story of the couple who chose a grisly ending to their spirited lives. But their case and others illustrate the difficulties of sanctioning physician-assisted suicide.
In 1998, Oregon implemented its Death With Dignity Act (DWDA) after several years of court challenges and a repeal attempt. Through the end of 2010, 525 Oregonians have died after taking medication, usually one of the central nervous system depressants secobarbitol or pentobarbital, prescribed by physicians under provisions of the DWDA. Most of those who died reportedly lost consciousness within minutes and died within hours, a more humane way to die, supporters of physician-assisted suicide maintain, than suffering through the final throes of an arduous illness or choosing a violent or more gruesome means to die.
In the case of the central Vermont couple, though, the ripple effect of their final decision persisted far beyond what they likely intended.
“Their primary motivation, I know was to not be a burden to others, their family, their neighbors, their friends,” says the couple’s Woodstock acquaintance, “many people were so profoundly impacted by that, and held that grief, held it for years.”
Data from the thirteen years of experience in Oregon also indicate that most people who chose physician-assisted suicide there were concerned about problems other than physical suffering; only 21 percent cited worries about pain control as an end-of-life issue. Nearly all of them, however, told their physicians that they were distressed about loss of autonomy and no longer being able to engage in life’s enjoyable activities; over a third did not want to burden their families, friends and caregivers. Addressing these issues through hospice care and other support, as well as pain management, would better serve the terminally ill than establishing a system that offers them help in taking their own lives, argue the opponents of physician-assisted suicide.
To Windsor District Senator Dick McCormack, discussions of the best, or good, ways to die don’t home in on what he sees as the real issue. The Bethel resident is a co-sponsor of S.103, Patient Choice and Control at End of Life, a bill modeled after Oregon’s DWDA, that is currently before the state Senate Committee on the Judiciary. The measure is also before the House of Representatives’ Human Services Committee as H.274. “To [the opponents of physician assisted suicide], the question is how should we die, what is the right way to die,” McCormack says, “but to those who support the bill, the question is completely different. The question is who should get to decide what is the right way to die.”
Patient Choice and Control at End of Life takes decision-making about the timing and manner of death for the terminally ill out of the hands of politicians, says McCormack, and gives it to “free citizens” who “ought to have the right to make his and her own choices in this matter…the proper role of the state is to protect peoples’ freedom, not to take their freedom away.”
Although Oregon’s law has granted certain terminally ill residents the right that McCormack and other supporters want for Vermonters, the Supreme Court of the United States has said that assisted suicide is not a constitutionally conferred right.
In the 1997 case Washington Versus Glucksberg, the Court was asked to declare Washington’s then ban on assisted suicide a violation of the due process clause of the Fourteenth Amendment, and therefore unconstitutional. The Court refused, saying among other things, that to “hold for respondents, we would have to reverse centuries of legal doctrine and practice, and strike down the considered policy choice of almost every State,” and that extending constitutional protection to a right to assisted suicide would “place the matter outside the arena of public debate and legislative action.”
Senator McCormack also feels that the proposed Vermont measure, which he says has been honed during years of discussion and debate here, contains the protections needed to guard against dangers. Many opponents of physician-assisted suicide feel that it results in needlessly early loss of life because of misdiagnoses and abuse or coercion, and because some terminally ill patients who want to end their lives lack capacity for rational decision-making. To “qualify” for a lethal prescription under S.103, a patient’s diagnosis of “an incurable and irreversible disease which would, within reasonable medical judgment, result in death within six months,” must be confirmed by a second, “consulting physician.” A patient must make three separate appeals for the medication, including a written request that is verified by two disinterested witnesses. All patients must explore palliative care options, and those thought to be suffering from judgment-impairing mental illness or depression must be referred for counseling. “We know for a fact that these are adequate protections because they have worked,” says McCormack, “We have a case study, which is the state of Oregon.”
Use of physician-assisted suicide in Oregon has been relatively rare, say its proponents. According to reports issued by the Oregon Public Health Division, the number of people who died there from taking medications prescribed under the provisions of the DWDA has grown from 15 in 1998 to 65 in 2010. That’s a rate of about 21 for every 10,000 deaths in 2010; deaths from diabetes, for example, occur at a current rate of about 320 per 10,000 deaths and from cancer at about 2,300 per 10,000 in Oregon.
The patients who died from lethal prescriptions, the Oregon Public Health Division reports, tended to be well-educated, over two thirds had at least some college education, and older, almost 70 percent were over 65 years old. Nearly all suffered from either cancer or amyotrophic lateral sclerosis (commonly know as Lou Gehrig’s disease). Minorities and women, thought by some to be vulnerable populations, were not disproportionately represented; about 2 percent of those who died were not white, and 46 percent were women. Supporters of the DWDA say that the high rate of enrollment in hospice among those who died, 86 percent, indicates that the patients were aware of their care options.
However, Doctors Herbert Hendin and Kathleen Foley find much to criticize in the Oregon experience. Hendin is a Professor of Psychiatry at New York Medical College and Chief Executive Officer of Suicide Prevention International; Foley is an attending Neurologist at Memorial Sloan-Kettering Cancer Center, a Professor of Neurology at Cornell University’s Weill Medical College, and the Medical Director at the International Palliative Care Initiative of the Open Society Institute.
In a lengthy analysis that appeared in the June 2008 Michigan Law Review, Hendin and Foley contend that the safeguards in the Oregon law “are circumvented in ways that are harmful to patients.” The proposed Vermont legislation is modeled after the Oregon law, although there are some differences; S.103 and H.274, for example, require palliative care consultation referrals for patients not in hospice care, while Oregon’s DWDA requires only that physicians inform patients of alternatives.
To Hendin and Foley, it is problematic that all of the data available to describe the “success” of the Oregon experience are provided by the prescribing doctors; the Oregon Public Health Division does not provide information from families of patients, consulting physicians, physicians who declined to provide prescriptions, psychiatrists who evaluated patients, and others who might provide a fuller picture.
Furthermore, the two say that in 75 percent of the Oregon cases, the advocacy organization Compassion in Dying (now Compassion and Choices) was involved. That group maintains a list of doctors who are willing to participate in physician-assisted suicide under the provisions of the DWDA.
With the Oregon law in place, say Hendin and Foley, some physicians “adopt a different approach to patients with serious medical illness.” When asked for DWDA prescriptions for life-ending medication, those physicians focus on assessing whether or not the patients “qualify” under the law’s provisions, rather than on discovering and treating the pain or depression or fear or other factors that underlie the requests.
Hendin and Foley explain the contrast of these approaches in the case of a 63-year old Oregon man diagnosed with inoperable lung cancer. Two physicians associated with Compassion in Dying worked with the man on the assisted suicide option; one prescribed a lethal dose of medication without asking about or learning of his history of depression and suicide attempts. The patient also contacted the group Physicians for Compassionate Care, who instead, say Hendin and Foley, helped him talk through his problems, and obtain chemotherapy and radiation, medication for depression, and, when ultimately necessary, pain medication. He lived for two years after his diagnosis.
And, the Oregon law, even with its safeguards, Hendin and Foley write, does not adequately protect the terminally ill against the subtle or explicit coercion of caregivers who might be feeling strained under the heavy burden of tending to patients’ needs. They point to the case of an 85-year old woman with stomach cancer; her daughter, who was her caregiver, sought a second opinion when an initial psychiatric evaluation found that the patient’s desire for suicide was not clear-cut. Even though the second assessment noted some evidence that the daughter was coercive, the evaluating psychologist deemed the patient able to make her own decisions, and a prescription was issued and filled. The patient ultimately took the lethal dose of medication after coming home from a weeklong stay in a nursing home that had been arranged to give the daughter a break from care-giving.
“One can readily see how in the best of circumstances, frail, elderly patients can feel coerced to die,” write Hendin and Foley, “Caregiver burden has been identified as a serious issue.”
Furthermore, according to the Department of Health, less than 8 percent of patients who died under the provisions of the DWDA in Oregon were referred for psychiatric evaluation.
It is not clear whether or not Vermont’s health care mechanisms are sufficient to prevent situations like those described by Hendin and Foley, should Patient Choice and Control at End of Life become law. The state Legislature has acknowledged that systems for providing palliative and hospice care here are inefficient. The Dartmouth Atlas of Health Care reports that hospice use is low in Vermont; from 2003 to 2007, less than a quarter of dying Vermonters used hospice and those for only about ten days each, averages that are near the bottom among all states. In 2008, about 1,275 Vermonters died of cancer.
Earlier this year, the state House of Representatives and the Senate passed H.201, a measure to promote use of palliative and hospice care, which the Governor signed it into law in June. In addition to pointing out that hospice is under utilized, the legislators, in their findings, concede that: “Good palliative and hospice care is available in Vermont, but a better system needs to be in place to ensure access to that care. Financial pressures or insurance limitations sometimes contribute to the lack of access to palliative and hospice care.”
It is difficult to say how many of Vermont’s 630 or so primary care physicians and approximately 1250 specialists are equipped to provide effective palliative care consultations and treatments. H.201 requires that physicians complete 10 hours of continuing medical education to qualify for biennial license renewal; up until now, however, there has been no continuing education requirement. “Health care professionals in Vermont lack sufficient education and training in the areas of end-of-life-care, palliative care, and pain management,” according to H.201’s findings.
The press to pass Patient Choice and Control at End of Life and its predecessors has been led in large part by the non-profit advocacy group Patient Choices Vermont, says its president, Shelburne resident Dick Walters. The group employs two lobbyists in Montpelier. If the legislation does not pass in the upcoming session, “we will continue,” he says.