Physician-Assisted Suicide and the Perils of Empirical Ethical Research
JAMA Netw Open. 2019;2(8):e198628. doi:10.1001/jamanetworkopen.2019.8628
9 August, 2019
Reproduced under the terms of the CC-BY License.
Al Rabadi et al1 compare statistics on physician-assisted suicide (PAS) available from public databases for the states of Washington and Oregon and find similar profiles and trends, which is unsurprising given the similarity of the laws and demographic characteristics of these states. Among the unanswered questions are what such a study can contribute to medical ethics (about PAS or any other ethical controversy) and what the limits are of such work.
First, it should be noted that the medical literature is, in general, favorably disposed toward the empirical and the new. Although this predilection is often advantageous for scientific progress, it introduces a problematic bias when applied to ethical questions. The appeal of the study by Al Rabadi et al1 is that it is empirical, and by comparing data from 2 states for the first time, it can be considered novel. Because there are new reports each year and the practice of PAS is legal in only a few states, descriptive reports about PAS are published frequently. This means, however, that articles defending the ethical status quo (ie, against PAS) tend to be shut out of the medical literature because they are not reporting anything new and, therefore, cannot have any data. The result is an impression of growing acceptance of PAS, but it really represents an artifact of a scientific bias.
The frequent publication of statistics on PAS and euthanasia also imparts another implicit ethical bias. Although conducting health services research about an ethically disputed question appears ethically neutral, one already presumes without argument that the service to be delivered is ethically good. Therefore, the standards for assessing good and bad within the framework assumed by the research are limited to questions of access, efficiency, effectiveness, implementation, safety, and regulation. This takes the central ethical question of whether the service ought to be delivered in the first place off the table, suppressing critical ethical debate. Frequent publication of studies like that by Al Rabadi et al1 have the effect of "normalizing" the practice, inuring readers to the practice and concealing ethical concerns.
Moreover, data cannot tell a society or a profession what ought to be done—a consequence of what philosophers call the fact-value distinction. Empirical reports alone cannot answer normative ethical questions. Whether just 1 person or 100, 000 persons legally avail themselves of lethal prescriptions cannot tell us whether the practice is right or wrong.
Likewise, the language used by empirical investigators can obscure the ethical issues at stake. Language can shape people’s attitudes and approaches toward controversial questions. There is no scientific basis for deciding on terminology, except, perhaps, marketing science. The language around PAS includes such terms as "death with dignity," "assisted dying," "assisted death," and "hastened death." Al Rabadi et al1 use the phrase "medical aid in dying." These terms are imprecise. Giving a dying person an aspirin might count as aid in dying every bit as much as 5 g of secobarbital. These terms obscure distinctions of both ethical and empirical importance but have been shown to improve public opinion polls in favor of the practice. Serious proponents of PAS, such as the philosopher Peter Singer,2 prefer to describe it as a form of rational suicide and do not shy away from the most accurate description.
The public databases on which the study of Al Rabadi et al1 relies are not designed for research. They rely on self-reported data supplied by clinicians, who are generally not present at the time of ingestion of the fatal dose of drug by the patient and have an incentive to make their own roles look good. These data have never been validated, to my knowledge. The information collected is purposefully thin to protect prescribers’ confidentiality. There are no data on unreported cases. The health department is not permitted to investigate any allegations of abuse.3 Although these laws do suggest referral to psychiatrists if there are questions about the patient’s decisional capacity, and it is known that large numbers of terminally ill patients, including those seeking PAS, are depressed, since 2003, only 0% to 4% of such patients have been sent for psychiatric referral.3 There are also data suggesting, for instance, that large numbers of patients who ingest these drugs are at least
transiently awake and suffering, leading to calls for anesthesiologists to administer euthanasia using advanced medical monitoring techniques as the only way to ensure the sought-after peaceful death.4 Contrary to the characterization of Al Rabadi et al,1 Sinmyee et al4 are advocates, not opponents, of PAS and euthanasia. These concerns make the conclusion of Al Rabadi et al1 that PAS in Oregon and Washington is safe, reliable, and effective an invalid inference.
What We Know
At present, the number of reported cases, following the law, remains small but increasing steadily. Those who make use of the law tend to be white, wealthy, and educated.1,3 Despite public arguments that PAS is needed to avoid excruciating pain and other symptoms, the reasons attributed to patients who seek PAS are not uncontrolled symptoms but lost autonomy, independence, and control.1,3 About one-third of patients die without taking the drugs,3 which may suggest that patients only wanted the security of having a way out, but it could equally indicate that they died before using the drugs or changed their minds about using them. A small (but growing) number of physicians write the prescriptions.3 For example, one of the authors of the study by Al Rabadi et al1 wrote 15% of all PAS prescriptions in Oregon in 2018.5
There is also much that we do not know. We have few direct, valid studies of the patients and practitioners. We do not know how many cases are unreported to the databanks. We do not know how many patients are pressured into obtaining prescriptions. We do not know how many patients engage in "doctor shopping," finding someone who will agree to their request if turned down by a given physician. We do not really know how often the process goes awry. We know little about the after-effects on practitioners and family, although there are reports of posttraumatic stress disorder.6 We also need more data on suicide contagion, because preliminary reports7 suggest increased rates of suicide in the general population of states that have legalized PAS.
Safeguards built into the law are coming to be seen as barriers. As already noted, few patients are ever referred to psychiatrists. A new law in Oregon (Oregon Senate Bill 579) now allows a patient to bypass the waiting period and take the pills within 2 days, and legislation has been passed by the Oregon House (Oregon House Bill 2217) to allow injection of lethal drugs, a hair’s breadth away from euthanasia.5 There are increasing calls for permitting patients with dementia to be able to authorize their deaths through advance directives. In Belgium and the Netherlands, 5% of all deaths are by euthanasia and the indications have expanded to include psychiatric illness and life completion.8,9 Euthanized patients are now regular sources for organ donation.10 Although there is no empirical proof that the United States will follow these trends if PAS is more widely adopted, the logic that justifies PAS inexorably points in this direction. Studying these trends empirically will not prevent
them from occurring. Are we willing to entertain a serious ethical debate, based on reasoned argument, or will we be content merely to file empirical reports on whatever fate befalls us?
Published: August 9, 2019. doi:10.1001/jamanetworkopen.2019.8628
Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2019 Sulmasy DP. JAMA Network Open.
Corresponding Author: Daniel P. Sulmasy, MD, PhD, Kennedy Institute of Ethics, Healy 419, Georgetown University, 3700 O St NW, Washington, DC 20057 (firstname.lastname@example.org).
Conflict of Interest Disclosures: None reported.
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