Teach options to assisted suicide instead
By Herbert Hendin and Kathleen Foley
The Hawai'i Legislature is considering how best to address what the U.S. Supreme Court has declared should be every person's right: care at the end of life to relieve suffering.
The court made clear it was referring to palliative care, the term for relief of suffering in patients with serious or life-threatening illnesses. The court challenged the states to provide that care.
Hawai'i, like many other states, has not yet done so. A recent report by the Last Acts program of the Robert Wood Johnson Foundation evaluated end-of-life care in all 50 states.
Hawai'i and Oregon whose assisted-suicide law is serving as a model for advocates of assisted suicide in Hawai'i received equally undistinguished marks.
Hawai'i did poorly in the percentage of its doctors trained in palliative care, hospitals providing palliative care and hospitals providing pain management programs. Only 20 percent of terminally ill patients in Hawai'i receive hospice care. Only a little more than 20 percent are able to die at home, although most prefer to do so.
Hawai'i was among the 10 weakest states in adopting adequate pain management.
Legislators need to address these urgent problems, which affect tens of thousands of Hawai'i residents and will affect many more as the population ages. Three questions need to be addressed:
Does Hawai'i need a law to protect dying patients from unwanted treatments?
No, patients already have the same right to be relieved of painful and inappropriate treatments that only prolong dying as they do to refuse them in the first place.
This is not assisted suicide. Nor is giving medicine to relieve suffering, even if it risks death. These practices, including sedation of those near death, are accepted practices medically, ethically and legally.
Many people are not clear about these distinctions. Advocates of assisted suicide have encouraged this confusion by using such terms as "assisted death" or "death with dignity" that blur distinctions while implying that these practices are currently illegal.
Isn't an assisted-suicide law working in Oregon?
Objective evidence indicates it is not. Oregon's law has failure built into it. In becoming the first and only state to legalize assisted suicide, Oregon drew on failed guidelines developed in the Netherlands, which has 20 years' experience with legal sanctions. The guidelines consist of a competent patient who has unrelievable suffering and makes a voluntary request to a physician, who must consult with another physician and report the case afterward to authorities.
Charges of abuse led the Dutch government to conduct studies granting physicians immunity for anything they revealed. The studies found that the guidelines were consistently violated and could not be enforced. Most cases are not being reported, which makes regulation impossible. Any reporting is done after the fact, which means only the doctor can tell what happened.
Given legal sanction, assisted suicide and euthanasia intended originally for the exceptional case have become an accepted way of dealing with serious or terminal illness in the Netherlands. Palliative care has become one of its casualties, while Dutch hospice care has lagged behind other countries.
Most alarming in the Dutch studies has been the documentation of several thousand cases a year in which patients who have not given their consent have their lives ended by physicians. About one quarter of physicians stated that they had "terminated the lives of patients without an explicit request" from the patients to do so.
Oregon is experiencing many of the same problems. Although it legalizes only assisted suicide and not euthanasia, the state's law differs from the Dutch in one pernicious respect: Intolerable suffering that cannot be relieved is not a criterion for assisted suicide in Oregon; simply having a diagnosis of terminal illness with a prognosis of less than six months to live is sufficient. This shifts the emphasis to satisfying statutory requirements rather than relieving suffering. It encourages physicians to go through the motions of offering palliative care.
Although physicians are required to inform patients requesting assisted suicide that palliative care and hospice care are feasible alternatives, they are not required to be knowledgeable about how to relieve either physical or emotional suffering in terminally ill patients.
Without such knowledge and most physicians have not been trained in palliative care the physician cannot present feasible alternatives. Nor is the untrained physician required to refer any patient requesting assisted suicide for consultation with a physician knowledgeable about palliative care.
A survey of Oregon physicians who received requests for assisted suicide revealed that in only 13 percent of cases was there a recommendation for a palliative-care consultation. Offering a patient palliative care becomes a legal regulation to be met rather than an integral part of an effort to relieve the patient's suffering so assisted suicide does not seem the only alternative. How this happens is suggested by the experience of Helen.
Helen was in her mid-80s with metastatic breast cancer. Her own physician had not been willing to assist in her suicide for unspecified reasons; a second physician refused on the grounds that she was depressed. Helen called Compassion in Dying (an advocacy group for physician-assisted suicide) and was referred to a physician who would assist her.
After Helen's death, a Compassion in Dying news conference featured an interview with Helen recorded two days before her death. In it, the physician tells her there are other choices she could make, which he will list for her.
He does this in three sentences covering hospice support, chemotherapy and hormonal therapy.
Doctor: "There is, of course, all sorts of hospice support that is available to you. There is, of course, chemotherapy that is available that may or may not have any effect not in curing your cancer, but perhaps in lengthening your life to some extent. And there is also available a hormone which you were offered before by the oncologist, tamoxifen, which is not really chemotherapy but would have some possibility of slowing or stopping the course of the disease for some period of time."
Helen: "Yes, I don't want to take that."
Doctor: "All right, OK, that's pretty much what you need to understand."
A dismissive presentation of alternatives, limiting any autonomous decision, is further compromised by the law's failure to require psychiatric evaluation the standard of care for patients contemplating suicide.
Only if the physician believes the patient's judgment is impaired is referral to a licensed psychiatrist or psychologist required. A diagnosis of depression in itself is not considered a sufficient reason for such a referral.
However, patients who desire an early death during a serious or terminal illness, like other suicidal individuals, are usually suffering from a treatable depressive condition. And studies have shown that nonpsychiatric physicians are not reliable when diagnosing depression, let alone determining whether it is impairing judgment.
The psychiatric consultation is intended to deal only with the limited issue of a patient's capacity to make the decision for assisted suicide to satisfy the statutory requirement of informed consent. The story of Joan Lucas is illustrative.
An Oregon patient with a debilitating terminal illness, Joan Lucas was assisted in suicide by a physician who stated that after talking with lawyers and agreeing to help Joan, he asked her to undergo a psychological examination.
"I elected to get a psychological evaluation" he said, "because I wished to cover my ass. I didn't want there to be any problems."
A cooperative psychologist was found who asked Joan to take a standard psychological test based on true-false questions. Because it was difficult for Joan to travel to the psychologist's office, her children read the questions to her at home. The family found the questions funny, and Joan's daughter described the family as "cracking up over them."
Based on these results, the psychologist concluded that whatever depression Joan had was a normal response to her illness. His opinion is suspect, the more so because he did not feel it necessary to see her before giving an opinion that would facilitate ending her life.
It was hoped that Oregon would serve as a laboratory showing us how assisted suicide would work. This has not occurred. The law was not written with such an aim in mind, and the Oregon Health Division has approached it in a restrictive "don't ask, don't tell" manner.
The Health Division asks physicians to provide minimal medical information, and there is no provision for independent evaluation of whatever data is available.
They do not ask patients for information. Nor do they interview hospice staff in close contact with patients requesting suicide. Nor do they contact physicians who have declined patient requests for assisted suicide.
To know what percentage of cases are not reported, or the frequency of terminating life without any explicit request, the state would have to do as the Dutch did, and grant immunity to physicians surveyed.
A survey of several thousand U.S. physicians throughout the country revealed that almost 5 percent had given a patient a lethal injection, in 79 percent of cases to patients who had not made an explicit request for it.
Dr. Diane Meier, who led the survey, had been a leading advocate of legalizing assisted suicide. She changed her mind, concluding that legal sanction would only encourage more physicians to believe they know best who should live and who should die.
But shouldn't any terminally ill patient have an autonomous right to assisted suicide?
Patient autonomy is a cruel illusion when most physicians are not trained to assess and treat patient suffering or to diagnose and treat depression. The choice for patients then becomes continued agony or a hastened death.
Only recently have we recognized the need to train general physicians in how to relieve the suffering of terminally ill patients. Studies show that the less physicians know about palliative care, the more they favor legal assisted suicide; the more they know, the less they favor it.
They know that patients requesting a physician's assistance in suicide usually are telling us as strongly as they know how that they desperately need relief from their fear and suffering, and that without such relief, they would rather die.
When they are treated by a physician who can hear their ambivalence, understand their desperation and relieve their suffering, their wish to die usually disappears.
The World Health Organization has recommended that governments not consider assisted suicide and euthanasia until they have demonstrated the availability and practice of palliative care for their citizens. In the United States, we have a long way to go to achieve the end-of-life care that the U.S Supreme Court said is every patient's right. This is the right that patients should demand and the challenge that states need to meet.
Like most other people, legislators are strongly affected by their personal experiences with the deaths of people close to them. They are in the process of learning that with well-trained doctors and nurses and good end-of-life care, it is possible to avoid the pain that many of their loved ones went through.
But the legislators themselves have a vital role to play.
The Hawai'i Legislature should act now to ensure that medical school and residency programs include palliative care as part of their training, and that all hospitals have palliative care and pain management programs.
California has adopted training requirements, which we think are desirable. Requiring at least annual public reports from medical schools and hospitals would permit the Legislature, the media and the public to measure progress.
The public is uninformed of its rights regarding end-of-life care. The public awareness campaign of Hawai'i's Kokua Mau (Continuous Care) project is an important first step. But Hawai'i will need the investigative and educational efforts of the press and broadcast media to create an informed public that will be the best catalyst for progress.
Hawai'i has a history of dealing with quality-of-life issues. We hope it will not follow the failed policies of the Netherlands and Oregon, but find its own way to take the lead in improving end-of-life care.
Herbert Hendin and Kathleen Foley are physicians and authors of "The Case against Assisted Suicide: For the Right to End-of-Life Care."