u
u Avoiding
a Slippery Slope in PAD
In “Physician Assisted Dying: A Subtler Slippery Slope” (March-April 2014), Thomas Duffy sheds some light on the issue of physician-assisted dying (PAD) but, I think, draws an unwarranted conclusion. He describes his experience prescribing a large amount of narcotic medication for a patient who died soon thereafter, apparently from a self-administered overdose. Upon reflection, he feels that he was “an assistant, albeit at a remove, in her suicide.” Apparently drawing on this experience, Dr. Duffy seems to cast doubt on the reliability of the Oregon Death with Dignity initiative, concluding that, despite “the apparent absence of any slippery slope . . . . the slippery slope may be subtler and even more insidious and dangerous for the profession.” What is the basis for this conclusion? If Dr. Duffy had been practicing in Oregon, his patient, who was not terminally ill, would almost certainly have been ineligible for PAD under the criteria of Oregon’s Death with Dignity initiative, and Dr. Duffy would have had ample opportunity to consider her situation and to review it with a colleague. After all, included among the Oregon criteria is the requirement that the patient have an incurable and irreversible disease that has been medically confirmed and will, within reasonable medical judgment, produce death within six months. Practicing in a state that has not sanctioned PAD and thus being free of the restraints imposed in Oregon, Dr. Duffy found himself straying across what he subsequently recognized as an important boundary. The lesson, it seems to me, is not that PAD per se represents a July-August 2014
exchange
t
slippery slope, but that PAD unrestricted by sound criteria (such as those in place in Oregon and elsewhere) represents a slippery slope. Given that some patients will seek assistance (often covertly) as Dr. Duffy’s patient did, I think the lesson is not that the slippery slope lies in wait for the unwary physician but, rather, that appropriate policies and procedures are the best protection against that slippery slope. • Peter Rogatz Compassion & Choices of New York DOI: 10.1002/hast.319
u “Bad
words”: Tell Them to the Surrogate
The recent Case Study “Bad Words” (March-April 2014) sets forth a dilemma medical professionals may face in communication with patients. It is
A surrogate decisionmaker can help protect a patient’s right not to be told about health and treatment options. about words concerning illness and its management (such as “dying,” “cancer,” “chemotherapy,” and “radiation”). They are common words but important and needed to educate patients about their condition and treatment. Nevertheless, they pose an emotional hazard and pain to some patients hearing them. In the case presented, the patient refused to hear those words from her doctors. The dilemma is how medical professionals should respond: how can they be attentive to fully informed and autonomous decision-making by the patient,
an ethical and legal requirement in our culture, yet preserve the patient’s autonomous right to limit the information he or she is told or to decide even not to be told about health and treatment options? Or does the patient, indeed, have such a right? One ethical defense of such a right is the argument that if a patient has the ethical and legal right, certainly within the United States, to refuse initiating or terminating life-sustaining treatment, then it could follow that such a right exists for refusal to be informed even if the outcome of such ignorance is life threatening. But how to get around the conflict of patient’s rights versus the ethics and laws dictating patient informed consent is often not clearly established. A solution is by selection of a surrogate. In the Case Study, there is a potential surrogate, the patient’s son, to whom all the “bad words” could be spoken by the physicians and who would be able through substituted judgment or best interest to make decisions for his mother. But this requires the patient to inform the medical staff of the selection of a surrogate. Unlike a comatose patient, this patient, despite her rejection of being informed, still is competent to select a surrogate. If the patient in the Case Study were living in California, there would be an easy legal solution. Under probate code 4711, any patient who is competent may select a surrogate to assume all medical decision-making responsibilities, including priority over an established power of attorney for health care agent, within a limited time, for that illness. Thus the surrogate, instead of the patient, can listen to the information, including those “bad words,” and then make that informed but substituted judgment or best-interest decision, hopefully later also providing the patient follow-up education and H AS TI N GS C E N TE R RE P O RT
3
support that she can accept and understand. Is the physician’s professional and ethical dilemma resolved by the California law? Maybe or maybe not. In a doctor-patient relationship, it really isn’t the surrogate who is the patient. • Maurice Bernstein Keck School of Medicine University of Southern California DOI: 10.1002/hast.320
u Public
Health Paternalism and “Expenditure Harm”
In “Making the Case for HealthEnhancing Laws after Bloomberg” (January-February 2014), Michelle Mello and David Studdert criticize then mayor Michael Bloomberg for “lurching too quickly toward benevolent paternalism” when defending his public health policies. Mello and Studdert prefer to stress the “negative externalities” that one person’s unhealthful behavior can impose on others. They argue that people who wish to be free from nanny-state meddling should nevertheless “be angered by the prospect that people’s poor choices about nutrition, physical activity, and tobacco and alcohol use are pushing up insurance premiums for everyone.” Thus Bloomberg should have invoked something like the harm principle to justify the policies he in fact justified on paternalistic grounds. I believe this “expenditure harm” argument faces three main hurdles, and I worry it cannot surmount them all. First, many critics of Bloomberg’s policies will also be libertarian critics of tax-financed health care. Yet the expenditure harms that Mello and Studdert highlight arise only because the government forces some to subsidize the health care of others. Of course it is true that any politically savvy libertarian will see that programs like Medicare and Medicaid and the Affordable Care Act are here to stay. But it does not follow that she will thereby support laws intended to constrain her unhealthy (and thus costly) fellow citizens, for while libertarians 4 HASTIN G S C E N T E R R E P ORT
certainly do not like taxes, it is possible they dislike soda bans even more. The second main hurdle for the expenditure harm argument stems from the fact that health behaviors are but one part of the story behind high health care spending in the United States. Consider, for example, that in 2009 more than 500,000 people underwent arthroscopic surgery for frequent knee pain from osteoarthritis, at a total cost of $3 billion. This was despite the fact that a 2002 randomized control trial by J. Bruce Moseley and colleagues showed that the procedure is no more effective than a totally fake surgery involving skin incisions but no arthroscope. This question therefore arises: In a country where doctors make the world’s highest
In a country where even nonprofit hospitals make money hand over fist, how strong is the case for blaming and constraining the sodadrinking man on the street? medical incomes by providing services that are often of questionable benefit and where even nonprofit hospitals make money hand over fist by charging the world’s highest medical prices, how strong is the case for blaming and constraining the soda-drinking man on the street? If personal freedom continues to be an important value—as I assume Mello and Studdert believe—then it is not clear why we should restrict individual freedom to address a problem that can also be addressed by restricting the freedom of an often irresponsible set of profit-seeking providers. The third main hurdle for the expenditure harm argument comes from noting that the health behaviors at issue may be less than fully voluntary. We know, for instance, that the vast majority of smokers began smoking before they were eighteen and, thus, before the stage at which decision-making capacities are sufficiently developed. And once
an addiction has formed, voluntariness is perforce compromised. Indeed, for all we know, the habits of soda drinking, donut eating, and getting a lack of exercise are themselves reinforced by neurological patterns that resemble those present in “genuine” addiction. Moreover, public health scholars are increasingly concerned about further root causes such as agricultural policies’ promotion of abundant, cheap, and unhealthy calories, as well as “obesogenic” built environments that discourage active lifestyles. At the very least, the possible presence of these forces should lead one to pause before becoming “angry” at those whose “poor choices about nutrition, physical activity, and tobacco and alcohol use are pushing up insurance premiums for everyone.” To my mind, this third consideration in particular provides reason to show more compassion than anger, and I believe it may explain—contra Mello and Studdert—why it is better to justify Bloombergian policies on paternalistic grounds. For if the modern food environment really does significantly affect the decisional autonomy of significant numbers of individuals—and especially if this is the case for children whose habits and appetites for unhealthy foods are being primed for life—then that provides considerable reason to use public health policies to enhance decisional autonomy, informed choice, and, yes, the beneficial habits that are evidently so hard to instill all on one’s own. This line of reasoning lends support to Bloombergian policies on decidedly “weak paternalist” grounds, that is, on the grounds that they aim to promote the good of those whose decision-making abilities are to some extent compromised. But unlike with many weak paternalistic arguments, the target group here is not some relatively small segment of the population who (for example) might be judged legally incompetent by a court. Rather, the target group is that majority of the population whose decisions are so often shaped by unhealthy forces beyond their full control. • J. Paul Kelleher University of Wisconsin-Madison DOI: 10.1002/hast.321 July-August 2014
u Avoiding
a Slippery Slope in PAD
In “Physician Assisted Dying: A Subtler Slippery Slope” (March-April 2014), Thomas Duffy sheds some light on the issue of physician-assisted dying (PAD) but, I think, draws an unwarranted conclusion. He describes his experience prescribing a large amount of narcotic medication for a patient who died soon thereafter, apparently from a self-administered overdose. Upon reflection, he feels that he was “an assistant, albeit at a remove, in her suicide.” Apparently drawing on this experience, Dr. Duffy seems to cast doubt on the reliability of the Oregon Death with Dignity initiative, concluding that, despite “the apparent absence of any slippery slope . . . . the slippery slope may be subtler and even more insidious and dangerous for the profession.” What is the basis for this conclusion? If Dr. Duffy had been practicing in Oregon, his patient, who was not terminally ill, would almost certainly have been ineligible for PAD under the criteria of Oregon’s Death with Dignity initiative, and Dr. Duffy would have had ample opportunity to consider her situation and to review it with a colleague. After all, included among the Oregon criteria is the requirement that the patient have an incurable and irreversible disease that has been medically confirmed and will, within reasonable medical judgment, produce death within six months. Practicing in a state that has not sanctioned PAD and thus being free of the restraints imposed in Oregon, Dr. Duffy found himself straying across what he subsequently recognized as an important boundary. The lesson, it seems to me, is not that PAD per se represents a July-August 2014
exchange
t
slippery slope, but that PAD unrestricted by sound criteria (such as those in place in Oregon and elsewhere) represents a slippery slope. Given that some patients will seek assistance (often covertly) as Dr. Duffy’s patient did, I think the lesson is not that the slippery slope lies in wait for the unwary physician but, rather, that appropriate policies and procedures are the best protection against that slippery slope. • Peter Rogatz Compassion & Choices of New York DOI: 10.1002/hast.319
u “Bad
words”: Tell Them to the Surrogate
The recent Case Study “Bad Words” (March-April 2014) sets forth a dilemma medical professionals may face in communication with patients. It is
A surrogate decisionmaker can help protect a patient’s right not to be told about health and treatment options. about words concerning illness and its management (such as “dying,” “cancer,” “chemotherapy,” and “radiation”). They are common words but important and needed to educate patients about their condition and treatment. Nevertheless, they pose an emotional hazard and pain to some patients hearing them. In the case presented, the patient refused to hear those words from her doctors. The dilemma is how medical professionals should respond: how can they be attentive to fully informed and autonomous decision-making by the patient,
an ethical and legal requirement in our culture, yet preserve the patient’s autonomous right to limit the information he or she is told or to decide even not to be told about health and treatment options? Or does the patient, indeed, have such a right? One ethical defense of such a right is the argument that if a patient has the ethical and legal right, certainly within the United States, to refuse initiating or terminating life-sustaining treatment, then it could follow that such a right exists for refusal to be informed even if the outcome of such ignorance is life threatening. But how to get around the conflict of patient’s rights versus the ethics and laws dictating patient informed consent is often not clearly established. A solution is by selection of a surrogate. In the Case Study, there is a potential surrogate, the patient’s son, to whom all the “bad words” could be spoken by the physicians and who would be able through substituted judgment or best interest to make decisions for his mother. But this requires the patient to inform the medical staff of the selection of a surrogate. Unlike a comatose patient, this patient, despite her rejection of being informed, still is competent to select a surrogate. If the patient in the Case Study were living in California, there would be an easy legal solution. Under probate code 4711, any patient who is competent may select a surrogate to assume all medical decision-making responsibilities, including priority over an established power of attorney for health care agent, within a limited time, for that illness. Thus the surrogate, instead of the patient, can listen to the information, including those “bad words,” and then make that informed but substituted judgment or best-interest decision, hopefully later also providing the patient follow-up education and H AS TI N GS C E N TE R RE P O RT
3
support that she can accept and understand. Is the physician’s professional and ethical dilemma resolved by the California law? Maybe or maybe not. In a doctor-patient relationship, it really isn’t the surrogate who is the patient. • Maurice Bernstein Keck School of Medicine University of Southern California DOI: 10.1002/hast.320
u Public
Health Paternalism and “Expenditure Harm”
In “Making the Case for HealthEnhancing Laws after Bloomberg” (January-February 2014), Michelle Mello and David Studdert criticize then mayor Michael Bloomberg for “lurching too quickly toward benevolent paternalism” when defending his public health policies. Mello and Studdert prefer to stress the “negative externalities” that one person’s unhealthful behavior can impose on others. They argue that people who wish to be free from nanny-state meddling should nevertheless “be angered by the prospect that people’s poor choices about nutrition, physical activity, and tobacco and alcohol use are pushing up insurance premiums for everyone.” Thus Bloomberg should have invoked something like the harm principle to justify the policies he in fact justified on paternalistic grounds. I believe this “expenditure harm” argument faces three main hurdles, and I worry it cannot surmount them all. First, many critics of Bloomberg’s policies will also be libertarian critics of tax-financed health care. Yet the expenditure harms that Mello and Studdert highlight arise only because the government forces some to subsidize the health care of others. Of course it is true that any politically savvy libertarian will see that programs like Medicare and Medicaid and the Affordable Care Act are here to stay. But it does not follow that she will thereby support laws intended to constrain her unhealthy (and thus costly) fellow citizens, for while libertarians 4 HASTIN G S C E N T E R R E P ORT
certainly do not like taxes, it is possible they dislike soda bans even more. The second main hurdle for the expenditure harm argument stems from the fact that health behaviors are but one part of the story behind high health care spending in the United States. Consider, for example, that in 2009 more than 500,000 people underwent arthroscopic surgery for frequent knee pain from osteoarthritis, at a total cost of $3 billion. This was despite the fact that a 2002 randomized control trial by J. Bruce Moseley and colleagues showed that the procedure is no more effective than a totally fake surgery involving skin incisions but no arthroscope. This question therefore arises: In a country where doctors make the world’s highest
In a country where even nonprofit hospitals make money hand over fist, how strong is the case for blaming and constraining the sodadrinking man on the street? medical incomes by providing services that are often of questionable benefit and where even nonprofit hospitals make money hand over fist by charging the world’s highest medical prices, how strong is the case for blaming and constraining the soda-drinking man on the street? If personal freedom continues to be an important value—as I assume Mello and Studdert believe—then it is not clear why we should restrict individual freedom to address a problem that can also be addressed by restricting the freedom of an often irresponsible set of profit-seeking providers. The third main hurdle for the expenditure harm argument comes from noting that the health behaviors at issue may be less than fully voluntary. We know, for instance, that the vast majority of smokers began smoking before they were eighteen and, thus, before the stage at which decision-making capacities are sufficiently developed. And once
an addiction has formed, voluntariness is perforce compromised. Indeed, for all we know, the habits of soda drinking, donut eating, and getting a lack of exercise are themselves reinforced by neurological patterns that resemble those present in “genuine” addiction. Moreover, public health scholars are increasingly concerned about further root causes such as agricultural policies’ promotion of abundant, cheap, and unhealthy calories, as well as “obesogenic” built environments that discourage active lifestyles. At the very least, the possible presence of these forces should lead one to pause before becoming “angry” at those whose “poor choices about nutrition, physical activity, and tobacco and alcohol use are pushing up insurance premiums for everyone.” To my mind, this third consideration in particular provides reason to show more compassion than anger, and I believe it may explain—contra Mello and Studdert—why it is better to justify Bloombergian policies on paternalistic grounds. For if the modern food environment really does significantly affect the decisional autonomy of significant numbers of individuals—and especially if this is the case for children whose habits and appetites for unhealthy foods are being primed for life—then that provides considerable reason to use public health policies to enhance decisional autonomy, informed choice, and, yes, the beneficial habits that are evidently so hard to instill all on one’s own. This line of reasoning lends support to Bloombergian policies on decidedly “weak paternalist” grounds, that is, on the grounds that they aim to promote the good of those whose decision-making abilities are to some extent compromised. But unlike with many weak paternalistic arguments, the target group here is not some relatively small segment of the population who (for example) might be judged legally incompetent by a court. Rather, the target group is that majority of the population whose decisions are so often shaped by unhealthy forces beyond their full control. • J. Paul Kelleher University of Wisconsin-Madison DOI: 10.1002/hast.321 July-August 2014
