Spring 2003 Vol. 10, Issue 2
This is an edited and updated transcript of a forum presented by the Harvard Medical School Division of Medical Ethics in May 2002. It was moderated by Susan Block, MD, chief of adult psychosocial oncology at the Dana Farber Cancer Institute and Brigham and Women's Hospital.
In November 1994,Oregon voters approved a referendum making physician-assisted suicide legal for terminally ill patients. After multiple legal challenges, the Oregon Death with Dignity Act went into effect in October 1997. But the debate did not end there. In November 2001, U.S. Attorney General John Ashcroft attempted to use the authority of the federal Drug Enforcement Agency to stop Oregon physicians from writing lethal prescriptions.
The Oregon Death with Dignity Act
Linda Ganzini, MD, professor of psychiatry at the Oregon Health Sciences University I'm going to focus on data from a variety of studies we performed in Oregon between 1994 and 1997, and since enactment of the Oregon Death with Dignity Act in 1997.
The Death with Dignity Act allows a terminally ill person to request a lethal prescription of medication for the purpose of self-administration. There are a series of safeguards: a second physician must certify that the patient is terminally ill; if there is concern that the patient has a mental disorder, there needs to be a consultation with a psychiatrist or psychologist; there is a 15-day waiting period during which the patient must make two oral and one written request; and all prescriptions must be reported to the Oregon Health Division.
All physicians who prescribe under the Act are required to notify the Oregon Health Division and provide documentation that the legal requirements are met. To date, there have been 129 deaths by assisted suicide under the Act. 1
People initially thought this was a vote for how bad palliative care and care of the dying were in Oregon. And there were concerns that with something as simple as assisted suicide there would not be any impetus to improve care of the dying. What we found, in fact, is that even at the time the Death With Dignity Act passed, Oregon was already ahead of the curve in care of the dying and has continued to be ahead of the curve. It has a very high rate of hospice care: currently 36 percent of all Oregonians die in hospice care, and only 2 percent of Oregonians lack insurance for hospice. Not surprisingly then, the vast majority - 78 percent - of patients who died by assisted suicide were enrolled in hospice. Also, Oregon has the highest per capita morphine use, perhaps because there are fewer barriers to narcotic prescribing.
In our survey of Oregon physicians, 2 we found that 33 percent thought that between 1994 and 1999 hospice had become more available, even though there has been no increase of hospice availability at all. Thirty percent said they were referring patients to hospice more often, while only 2 percent said they were referring less frequently. In our survey of physicians who had taken care of at least one terminally ill patient, over 70 percent said they had improved their recognition of depression in the terminally ill, improved their knowledge of pain medications, and felt more confident about pain medication. Two studies have explored why patients request assisted suicide: In one, physicians filled out information on 143 patients requesting lethal prescriptions. 3 In the other, hospice nurses and social workers filled out information on 119 patients who received a lethal prescription. 4
When we asked the hospice nurses and social workers to compare patients receiving lethal prescriptions to other hospice patients, only 15 percent reported that the requesting patients had more pain than other hospice patients, and only 10 percent reported that these patients had more shortness of breath. About 40 percent reported that these patients had fewer of those symptoms compared to other hospice patients. This finding indicates that it's not uncontrolled physical symptoms that drive patients to make these requests. So what is it?
Nurses and physicians both agreed that many requesting patients thought existence was pointless, their quality of life was poor and they were ready to die. But the big reasons, according to hospice nurses, hospice social workers and physicians, were fear of loss of independence and wanting to control the circumstances of death. Here are some quotes from various physicians on why these patients made these requests: "Exerting his will over his last moments was what was important." Another physician who opposed assisted suicide but had gotten several requests: "These were individuals who wanted control of their lives and it was a control issue. And they stated it up front. It had nothing to do with the care they were getting, and they would return to it and return to it and you could say 'We're doing all we can. We're making this commitment to you. We're going to try to take care of you.' But they sort of fixated on ending their life from the get-go." This is another one: "I think her big fear was loss of control. She wanted to control things up to the end. She wanted to plan it. She wanted things to go the way she wanted. She did not want to wait."
The legal debate
Robert Burt, JD,
Alexander Bickel Professor of Law at Yale Law School
I want to briefly give you some basic information about the current legal struggle between Attorney General John Ashcroft and the state of Oregon.
In November 2001, John Ashcroft said that in his estimation he had the authority to revoke the license of any physician who prescribed lethal medication. He drafted a regulation that would apply only to Oregon. The regulation provided that any physician who prescribed medication for lethal purposes and reported this fact to a state health agency would have his license revoked. The only place in the country where any physician would be motivated to report such a prescription to a state health agency is Oregon. The state of Oregon immediately took Ashcroft to federal court, challenging his statutory authority to issue this regulation. In April 2002, a U.S. district judge in Oregon overturned Ashcroft's interpretation, ruling that the attorney general did not have the authority that he claimed under the statute. [The case is currently on appeal in the U.S. Court of Appeals for the 9th Circuit. ed.]
Here, briefly, are the substantive arguments on each side. Under the 1970 Controlled Substances Act, any prescription for a controlled substance - which includes barbiturates and opioids - must be issued for a "legitimate medical purpose by a practitioner acting in the usual course of his professional practice." Ashcroft claimed that prescribing a controlled substance for the purpose of hastening death was not a legitimate medical purpose.
In 1984, the Congress passed an amendment to the Controlled Substances Act, which provided that the attorney general may revoke any practitioner's license for prescribing any controlled substance if the attorney general determines that "the issuance of such registration would be inconsistent with the public interest and would constitute conduct which may threaten the public health and safety." It's quite clear that in 1984 Congress was very concerned about the cocaine epidemic and the street use of drugs. Congress wasn't thinking about assisted suicide - nobody was. Nonetheless, the statutory language didn't just say "street use of drugs or narcotics for criminal purposes." It thus seems to me that Ashcroft has a reasonable argument based on the 1970 Act and the 1984 amendment. Having said that, it seems to me that the opponents have a stronger contrary case.
In ruling against Ashcroft, the Oregon federal district judge put forward a two-pronged argument. First, he said, when you look at the statute, it clearly isn't about assisted suicide at all, so it doesn't apply to physician prescription of lethal medication. Second, he said, there are important federalism concerns that must guide the interpretation of the congressional act. A sovereign state has solemnly decided that within its boundaries assisted suicide is to be legalized.
The Congress itself has not explicitly spoken to this issue. There were attempts to pass statutes that did explicitly speak to this issue, but the Congress didn't pass them and our federal system is meant to ensure respect for state autonomy to some significant degree. In my judgment, the district judge's interpretation of the statute was reasonable and should be upheld on appeal.
Let's assume, however, that, in the future, Congress explicitly amends the statute to say, "We find that there is a violation of the Controlled Substances Act for anybody prescribing lethal medication." A few years ago, it would have been clear that Congress had constitutional authority to do this, but based on recent Supreme Court rulings, it is no longer clear that Congress has this authority. The Supreme Court has been increasingly constraining congressional authority in order to protect states' freedom of action. There is a long tradition of federal drug regulation, and a few years ago that fact alone would have carried the day for congressional authority. But today the question is wide open.
It seems clear that the Oregon district judge was right to interpret an ambiguous statute in favor of the state's freedom of action. In effect, the district judge said that if Congress really wants to forbid use of controlled substances for assisted suicide, the Congress must say so without ambiguity - and then the courts will consider whether Congress does or does not have constitutional authority in this matter. 5
The principle of double effect
Nicholas Christakis, MD, MPH, PhD,
professor of medical sociology in the Department of Health Care Policy, Harvard Medical School
I was asked to comment on the principle of double effect and its relevance to palliative care and physician-assisted suicide. So let me begin by stating that I believe that our intentions matter. It's not only the outcomes of our actions, but our intentions that are extremely important. I have to say at the beginning that I believe in the doctrine of the double effect and I'm deeply committed to the use of drugs in the care of terminally ill patients.
The doctrine of double effect is an idea that has a very ancient Catholic root, primarily substantiated by St. Thomas Aquinas. It was, needless to say, initially propounded in areas that had nothing to do with medicine. According to the doctrine, a person may licitly perform an action that he foresees will produce a good and a bad effect, provided that four conditions are met. Number one, that the action in itself, from its very object, be good or at least indifferent. Number two, that the good effect and not the evil effect is intended. Number three, that the good effect not be produced by means of the evil effect. You can't do something bad in order to do something good that follows on from it. And number four, that there be a proportionately grave reason for permitting the evil effect. The doctrine originally found use in nonmedical contexts such as in discussions of the permissibility of killing civilians during wartime. And according to the doctrine of double effect, while it is never permissible to intend to kill civilians, it is permissible to anticipate the inadvertent killing of civilians in the conduct of warfare. Just because a bad side effect can be foreseen does not mean we are obliged to avoid the action.
Often this sort of double effect argument is seen by its critics as rank sophistry justifying horrible actions. Some have argued that there is an extension that may help mitigate this. In his book Just and Unjust Wars, 6 Michael Walzer argued that it is not enough that one is not trying to kill innocent civilians. One must affirmatively try not to kill them and this means that soldiers have to assume a certain risk, an affirmative risk, in order to protect the unintended killing of innocent civilians.
In the euthanasia example this would technically mean - if we take this argument seriously - that when we use morphine or other drugs to relieve pain, we would have an affirmative duty to try to mitigate the effects of the morphine in accelerating death. So we would give the person the morphine and immediately start mechanical ventilation to stop the effect of morphine in decreasing the respiratory effort of the patient. Or we would treat pneumonia that might result from the patient's decreased respiratory effort. If we were to hesitate to do this, it would reveal that we actually desire to relieve the pain in terminally ill patients in two ways: the direct effect of the morphine or other drug in relieving pain, and the indirect effect of the drug in accelerating death. It would mean that we were hiding behind the fig leaf of double effect. We would intend both effects but we would say we're only intending one, because if we really didn't intend both effects we would take affirmative actions to countermand the indirect effect. I am not suggesting that we should avoid morphine, or that we should, as a clinical matter, take the steps mentioned here; rather, I am pointing out a philosophical implication of certain types of clinical care. As a palliative care doctor, I have little problem with the 'side effects' of pain relief.
One of the other key problems in using the doctrine of double effect to justify or excuse ourselves from accelerating a patient's death or causing some other evil, is the problem of self-deception. My impression has been that many physicians who use these drugs say, in a kind of winking fashion, "I'm just using it to treat the pain. And I really don't intend for the patient to die, even though I know the patient is going to die." I have a sense that maybe they are either deceiving themselves or attempting to deceive me, knowing full well that the patient is going to die, perhaps even intending that the patient dies, but conveniently being able to say "Oh, I don't intend that the patient die." So the authenticity of the claim of lack of intention can be called into question. Once again, I am not opposed to the use of helpful drugs, even if they accelerate death; rather, I am drawing attention to the cogency with which we apply the doctrine of double effect.
Palliative care
Eric Krakauer, MD, PhD
associate director of the Palliative Care Service at Massachusetts General Hospital
Although I studied philosophy before medical school, I never thought seriously about the principle of double effect until I was confronted as a medical resident with clinical dilemmas in caring for hospitalized patients with life-threatening illnesses. I sometimes think of double effect as my most important tool in providing palliative care. It has been suggested that double effect is unnecessary for palliative care. This suggestion ignores the fact that patients facing terminal illnesses often are both very frail and suffering from severe pain or other symptoms. This certainly is the case in my practice at a tertiary care center. Although the limited available data indicate that opioids used carefully do not hasten death, it happens sometimes that a patient dies shortly after receiving a dose of opioid deemed to be the minimum dose necessary to relieve pain or dyspnea and carefully chosen to minimize the risk of side effects. And often very large doses of opioid pain medications or sedatives are needed. The principle of double effect provides an ethical basis for any clinician - including those morally opposed to physician-assisted suicide or euthanasia - to proceed with aggressive efforts to assure comfort for such patients as long as the patient wishes to be comfortable and accepts the attendant risk that death may be unintentionally hastened.
The principle of double effect allows clinicians to assure patients that they do not have to suffer. Guided by this principle, I can use any required dose of pain medication and, if necessary, anesthetic agents for patients whose symptoms I cannot control by any other means. I can tell patients that they do not have to suffer and I can allay their fears that adequate treatment may not be available.
I find Dr. Ganzini's data fascinating and a little surprising, specifically the fact that in Oregon it seems that severe symptoms were not a main motivating factor for requests for physician-assisted suicide. Although the available data might suggest otherwise, I still think that if good palliative care were always available, and if palliative sedation guided by the principle of double effect were available for the most extreme cases of refractory distress, this would reduce requests for physician-assisted suicide.
Finally, I think that Attorney General Ashcroft's action is a dangerous and unnecessary intrusion by the government into the patient/doctor relationship. It threatens physicians in such a way that they may be inhibited from providing adequate palliative care for fear of losing their ability to practice and maybe also from fear of criminal prosecution. The result would be that patients would suffer more than they already do.
Discussion
Robert Burt: I find Dr. Ganzini's data very intriguing and I, too, am struck by the absence of symptomatic complaints and of the conventional instrumental justifications for physician-assisted suicide. When you look back to the way the debate has been conducted on behalf of assisted suicide, the image put forward always was an incurably suffering person who has no other way out except by physician-assisted suicide. But that's not the way it's playing out in Oregon. Most people, as the data indicate, are not suffering from a recognized symptom, but they want very much to be in control. My own view is that death mocks that ambition for all of us, and in our culture we are particularly offended by that mockery. We want to be in control about everything, including the ultimately uncontrollable reality that we're all going to die. So if we're not talking about symptom relief but instead the wish to control, and that wish involves us in legitimizing practices which may be fine for some people but has deleterious consequences for others who are more vulnerable, I would say that's not an adequate ground. I don't think as a community that we are obliged to give you the illusion of control over death just because you want it.
Linda Ganzini: It's important to understand that this is a group of people for whom not being in control and being dependent on others is a source of incredible anxiety. It's an interesting group of people who have had some damaging experiences in their lives where being dependent on others, such as parents, was a source of over-control and a source of humiliation. They compensate for this by going through life with different kinds of attachments and that works well for them. They're quite successful in their communities. In Oregon this fierce independence is admired. I don't think you can underestimate the extraordinary anxiety and suffering they have at the thought of being dependent on other people at the end of life. Whether you agree about assisted suicide or not, I think that their voice needs to be heard and integrated into what we do.
Question: Dr. Ganzini, prior to your data we had worried that the kinds of people who would participate in physician- assisted suicide were those who had no connections, who were alone and had no one to care for them, particularly people who didn't have hospice care. Is it correct that your research has demonstrated that actually it is the loners and the radical individualists who opt for physician-assisted suicide, not the people in pain? And if you think that's true, isn't there something pathologic about people who would rather die than depend on someone else?
Linda Ganzini: Within psychiatry there's a general rule that what constitutes a mental illness is something that causes suffering and interferes with your ability to work and to love and to play. This is a group of people who, along that continuum, vary. I can tell you that in those spheres, despite their injuries, they're often quite successful in life and although many of them have smaller networks, some have very large networks; in fact, they are the patriarchs and the matriarchs of those networks. I think the better way to look at it is, that within mental health, we see people as having levels of coping mechanisms. Some are more mature than others. And clearly it is a higher level of maturity to allow oneself to be cared for by other people. But, on the other hand, you just can't say these people have a mental illness. They represent people who have strong control issues. As several patients said to me, "I don't want no goddamn hospice nurse wiping my butt." It's problematic to admire people their whole life for certain characteristics and then, only in the final few months of life, say that this is suddenly pathological.
Question: What's frightening me is the muddying of the water between physician- assisted suicide and palliative care. Clearly, in physician-assisted suicide they want the doctor to give them the prescriptions for it. They could get a gun. They could do it many other ways if they really want that.
Eric Krakauer: Certainly one can say that a lot of people could find some other means for committing suicide. But the patients I take care of often are so debilitated and so ill that they cannot. They may have very little control over much of anything.
Question (intensive care unit nurse): In palliative care, the intent is comfort, controlling pain, and the side effect often is death. But I believe in my heart, and this is oftentimes expressed to me by the patients I care for, the biggest fear that drives the desire for physician-assisted suicide is pain. And if people have confidence that their physicians can control their pain and keep them comfortable, the desire for death as an alternative to that pain is not there, and oftentimes they leave this world very nicely.
Susan Block: Remember what Dr. Ganzini started out with: 98 percent of people in Oregon have access to health care and to palliative care, including hospice care. Most of the patients she interviewed were in hospice, so their pain issues had been ameliorated because they were getting good palliative care. So it's a different kind of population than you would see in the hospital where we don't do as well with pain control.
Question: Recently, there have been three well-publicized suicides, and I was struck by the laudatory editorial comments about those actions. It seems to me this is a major change in our society and that 10 or 15 years ago there would instead have been negative comments. Somehow this is related to this whole issue and I just wonder if any of the panelists have any comments.
Nicholas Christakis: I think there is increasing acceptance of euthanasia or "self deliverance" in our society and this acceptance has arisen for a host of reasons, including that death has become seen as preferable to the alternative. The alternative here being a cartoonish depiction of a death in an intensive care unit that is highly technologized, dehumanized, institutionalized, depersonalized. And death is seen as more desirable. The contrast between death and end-of-life care has been heightened to the point where we see these things - such as euthanasia or suicide - as legitimate choices in our society.
One of the fascinating things is that in our society today we see little virtue in suffering. And to the extent that we devalorize those who are suffering, we make it harder for them to suffer. It's regarded as a reprehensible state, and the sufferer becomes an unwelcome member of our society, both because he or she makes us uncomfortable and because there's something wrong with the person. And it can lead to a belief in a kind of Norman Rockwellesque depiction of physician-assisted suicide: the kindly doctor with the little black bag gently administering morphine to patients dying peacefully at home.
Footnotes
1 see Hedberg K, Kohn M. Fifth Annual Report on Oregon's Death with Dignity Act. Portland: Oregon Department of Human Services, 2002. http://www.ohd.hr.state.or.us/chs/pas/ ar-index.cfm. and Hedberg K, Hopkins D, Southwick K. Legalized physician-assisted suicide in Oregon, 2001. N Engl J Med 2002;346:450-2.
2 Ganzini L, Nelson HD, Lee MA, Kraemer DF, Schmidt TA, Delorit MA. Oregon physicians' attitudes about and experiences with end-of-life care since passage of the Oregon Death with Dignity Act. JAMA 2001;285:2363-9.
3 Ganzini L, Nelson HD, Schmidt TA, Kraemer DF, Delorit MA, Lee MA. Physicians' experiences with the Oregon Death with Dignity Act. N Engl J Med 2000;342:557-63.
4 Ganzini L, Harvath TA, Jackson A, Goy ER, Miller LL, Delorit MA. Experiences of Oregon nurses and social workers with hospice patients who requested assistance with suicide. N Engl J Med 2002;347:582-8.
5 see Meisel A. Thwarting assisted suicide threatens palliative care. Lahey Clinic Medical Ethics Newsletter 2003;10(1):4-8. http://www.lahey. org/Ethics/newsletter/Winter 2003_HTML.asp#legal.
6 Walzer M. Just and Unjust Wars: A Moral Argument with Historical Illustrations. New York: Basic Books, 1977.
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