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Jan 1, 2024·Alzheimer s & Dementia Diagnosis Assessment & Disease Monitoring
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Responses to Open Peer Commentaries about “Timely dying in dementia: use patients' judgments and broaden the concept of suffering” and “Can an effective end‐of‐life intervention for advanced dementia be viewed as moral?”

Stanley A. Terman, Karl Steinberg

Responses to OPCs about “Timely dying in dementia: use patients' judgments and broaden the concept of suffering” submitted by Jenny T. van der Steen, Trijntje M. Scheeres-Feitsma, Petruschka Schaafsma; Norman L. Cantor; Paul T. Menzel; and Dena S. Davis By Stanley A. Terman and Karl E. Steinberg The protocol we recommend (detailed elsewhere2) strives to reduce the complexity of making end-of-life decisions by sharing the process among (A) the patient's judgments formed during advance care planning (ACP), (B) designated proxies/agents and others who are members of the Patient Decision Committee that the patient established during ACP, and (C) the physician/provider. The committee's main function is to decide when the patient has reached a condition that justifies a different, more clinically appropriate Physician Orders for Life-Sustaining Treatment (POLST), which the patient completed during a conversation with his/her ACP provider during ACP. End-of-life decisions may cause less emotional toll on members of the Patient Decision Committee because members share the burden of making these difficult existential decisions with other members. We disagree with the semantic argument that both Cantor3 and Menzel4 stated, paraphrased as: unacceptable deterioration may not cause suffering, so concentrating on only suffering misses much of what many people want to avoid in dementia. Yet we are willing to change our position if Cantor or Menzel presented examples of clinical conditions that cause “unacceptable deterioration” but do not cause suffering. Alternatively, they could conduct surveys or focus groups of clinical professionals or lay people that convincingly distinguish between unacceptable deterioration and suffering. We believe Cantor and Menzel have the burden of proof that these terms are not subsumed under suffering because our specific patient decision aid5 uses words and illustrations that generate conditional advance treatment decisions. Example: a man cannot or does not interact with anyone, even at his birthday party. Some observers may not appreciate his suffering; they describe his condition as “just sitting there.” Yet a broadened view of suffering would view his condition as extreme social isolation due to the ravages of advanced dementia that destroyed his brain's ability to communicate and resulted in the dying of all his relationships, which left him with severe existential suffering. If data from focus groups and surveys do not support subsuming types of deterioration and nonmedical terms under suffering, then Cantor and Menzel may have committed the logical fallacy of false exclusion,6 where one asserts (X) does not include (Y) when evidence convincingly demonstrates (X) does include (Y). Menzel asked:4 why would Cantor's published living will not be honored?7 Cantor requests stopping food and fluid if his irreversible mental deterioration causes the loss of ability to read newspapers and balance checkbooks. We judge this condition would cause only moderate suffering, which could be reduced to mild suffering, if family/friends shared the news, bookkeepers balanced checks, and Cantor enjoyed written material or other media at a lower literacy level. Even moderate suffering would not justify a provider writing an order to allow Cantor to die since it would violate two principles of medical ethics: it would provide no benefit and cause grave harm. Critics could judge the order as inconsistent with generally accepted medical care, immoral, and illegal—if viewed as euthanasia, which possibility Sulmasy raised based on Cantor's request for sedating medications if fasting causes discomfort.8 We contend our Perspective essay's broadened concept of suffering includes what Cantor and Menzel claim does not cause suffering, including “severe physical and cognitive degradation”; “altruism” (wanting to spare loved ones and society burdens of the disease); “intolerable indignity”; “withering”; “dwindling”; and a state that is “repugnant.” Physical deterioration causes suffering: (A) Immobility predisposes patients to developing painful bedsores. (B) Joint contractures due to flexors muscles overtaking extensors can lead to excruciating pain when patients are transferred between wheelchair and bed. (C) Muscle weakness and atrophy can lead to falling that causes pain from bruises and broken bones. (D) Swallowing difficulties can lead to malnutrition and dehydration that can lead to extreme fatigue and weakness and predispose to painful bedsores. Cognitive deterioration causes suffering: (A) Patients who become disoriented and confused may experience anxiety, fear, bewilderment, and paranoia. (B) Disruption of their life narrative can lead to their inability to function in their previous roles, which causes them to lose the essence of what gave their lives meaning. (C) Becoming increasingly dependent on others for help with activities of daily living (such as dressing, bathing, eating, and toileting), can lead to intense feelings of helplessness, desperation over lack of executive functioning, frustration in not fulfilling certain needs, and depression. (D) Changes in patients’ personality and behavior, especially agitation and aggression, may reflect their inner turmoil and loss of ability to communicate effectively. Patients may be dismayed at not being able to control their own behavior, including incontinence, which can cause extreme distress for them, their loved ones, and their caregivers. (E) Patients whose agitation and dangerous behavior are difficult to manage cause their loved ones more suffering that may include paying for more expensive care. The other extreme—withdrawn behavior—can lead to neglect, social isolation, and profound depression. Cantor asserted “the existing legal system” allows nonsuffering patients to die because courts honor precedent autonomy. But in practice, courts may not rule this way, and Cantor failed to cite any of several legal rulings that began with conflicts among family members, or between proxies/agents and providers or administrators, and which commonly force patients to endure unwanted prolonged suffering and dying. Cantor also failed to cite relevant statutes that allow physicians to decline to comply with living will requests. Example: California probate code allows providers to legally refuse to comply with patients’ requests (A) if their directive requests mercy killing, assisted suicide, or euthanasia (§4653), (B) if health care would be contrary to generally accepted health care standards (§4654), (C) if treatment would be medically ineffective (§4735), or (D) if the provider claims a conflict with personal conscience (§4734). If the above analysis and interpretation of Cantor's argument are correct, then Cantor may have committed the logical fallacy of selective inclusion of evidence (cherry-picking).9 Cantor's explanation for having confidence that the judicial system would favor his living will requests relied in part on his quoting statute: “Where a demented patient's prior expressed preferences are known, ‘the surrogate must make the medical choice that the patient 
 would have made.’” The authority of this statute is undeniable, but it seems irrelevant: surrogates are legally obligated to honor patients’ living wills, but judges are not. If this analysis and interpretation are correct, then Cantor may have substituted a strong argument (relevant for surrogates/agents) to support his weak argument (relevant for courts)—thereby committing the logical fallacy of ad verecundiam (fallacy of relevance of authority).10 Cantor used the term “deceptive” three times in referring to our proposal using severe suffering as the sole criterion for when a person would want to die. We wondered why Cantor repeatedly made such a pejorative allegation. Perhaps because (in his words) he dreads “a moral imperative to uphold the immediate well-being of the non-suffering patient” would prevent him and others from dying when they want. Yet our criterion is consistent with our government's adoption of parens patriae, which protects vulnerable individuals from harming themselves. So, despite the clarity of Cantor's living will, his “resolute” agent may fail in his/her attempt to persuade providers to implement Cantor's requests. We are concerned about Menzel's statement, that patients living with advanced dementia (PLADs) may progress to a stage where they “cannot subjectively experience suffering,” which in his opinion “is not real suffering.” Such a perspective fails to appreciate how difficult it is to determine if nonverbal, incapacitated patients are suffering. Furthermore, it is dangerous since it could lead to treating providers’ complacency and neglect as patients suffer—perhaps for years. Menzel argued that what gives advance directives their moral power is not prospective suffering but the right to retain the dignity of controlling their lives. We disagree, although dignity is important. Patients who complete advance directives are not just moral agents; they are morally obligated to protect from prolonged suffering, the vulnerable, nonverbal, future incapacitated patient living with dementia, whom they may someday become. We agree with Dena Davis's opinion: it is legal and makes sense to not administer food and nutrition to avoid prolonging the final stage of dying—even though assisted feeding seems like basic human care. We also agree that for some patients, this strategy will be implemented too late11—although stating “all [categories of suffering] come to pass long before the person reaches the stage where hand-feeding is necessary” is likely an incorrect overstatement. Yet dying can occur earlier if patients are at risk of contracting aspiration pneumonia, which causes more suffering than dying from medical dehydration (especially in nonverbal patients who cannot verbalize complaints). Withholding food and fluid is ethical since every person has the “claim right” to reduce suffering, which imposes correlative duties on others. We are currently exploring other ways to avoid being “too late.” Davis has long touted preemptive suicide as the only certain way to avoid prolonged dying in advanced dementia.12 But her informal surveys fail to prove that most people want to die soon after they receive a diagnosis of dementia. Here are two reasons, based on my attending one of her lectures: Davis's “subjects” were self-selected attendees at her lectures, and she failed to share adequate information to make an informed decision. Preemptive suicide can sacrifice years of reasonably good living and is a draconian “solution” that may not be necessary if the strategies added to ACP are effective in facilitating patients’ end-of-life goals. If so, the consequences of her recommendation could be tragic. Responses to Open Peer Commentaries for “Can an effective end-of-life intervention for advanced dementia be viewed as moral?” by Stanley A. Terman Response to William Lawrence Allen's OPC13 I provide two citations14, 15 to support “about 90% of PLADs have eating problems.” Allen harshly criticized the second, companion order, to this first order, “Cease assisted oral feeding and hydrating.” The purpose of the second order, “Always offer food and fluid by placing them in front of, and within reach of the PLAD,” is, in part, to help convince those in authority to facilitate acceptance of the first order, which may be PLADs’ last resort to avoid prolonged dying with suffering. (See other purposes, below.) Using the term “ruse” from my Perspectives essay, Allen argued that, if PLADs have already proved they cannot eat or drink independently, then such offering of food and fluid is a ruse whose purpose is to attempt to protect those involved from being indicted for euthanasia or elder abuse; and whose real purpose is to obscure the intent to hasten dying, which many consider immoral. My counterarguments are based on two widely accepted principles. The Principle of Proportionality16, 17 states: if the burden and harms of continuing an intervention are disproportionate to its potential benefits, then, even if the intervention is life-sustaining, it can be morally acceptable to discontinue it. The Principle of Double Effect18 permits actions such as physician orders whose intent is good (such as to reduce suffering), even if there is a possible, foreseeable, bad side effect (such as death). Allen argued, “If the vast majority of patients cannot feed themselves 
 always placing food and fluids within reach is futile” and “irrelevant and unnecessary.” If my interpretation and analysis are correct, then Allen may have committed the logical fallacy of extrapolation—from “vast majority” to 100%. While appropriate for many decisions, it is morally inappropriate if the life of a human being is at stake. Example: even if only 1 or 2 of 100 PLADs can resume independent eating and drinking, they deserve a revised treatment plan rather than being allowed to die. (This is another purpose of the second order.) Allen also contended, “Documentation of a dementia patient's disinterest in eating or drinking should be adequate, without ‘proving’ it by constant placement of food and drink in reach.” But disinterest in eating and drinking is not why PLADs want to cease assisted feeding. Their motivation is to avoid prolonged, irreversible, severe suffering. Allen stated, “Every patient has the ethical and legal right” “to shorten suffering 
 by ceasing assisted feeding and drinking.” I agree—provided patients had capacity during ACP, when they voluntarily made a clear and convincing request after their provider shared sufficient information for them to give their informed consent. Allen states he relies on competent, trained professionals to determine the etiology and reversibility of a PLAD's not eating—instead of placing food and fluid within the patient's reach, which he claims is neither effective as a defense against a charge of euthanasia nor a way to determine the etiology of not eating. Here, Allen may be assuming facts not in evidence. I am not aware of any data that support the ability of “trained, competent professionals” to determine with 100% accuracy, which patients can, and which cannot, regain their ability to independently eat and drink—before beginning medical dehydration. I do not share Allen's confidence in “competent trained professionals'” ability to determine the cause(s) of not eating. Most common is dementia-caused brain damage that led either to losing their ability to recognize items as food and fluid (agnosia) or to losing their ability to coordinate moving their hands to put food and fluid in her mouth (dyspraxia). But Allen failed to acknowledge the Perspective essay's list of clinical situations that could—albeit with an unknown but likely small percentage of patients—lead to a reversible loss of ability to eat and drink. Medical dehydration may (A) increase hunger that overcomes depression, apathy, or voluntarily waiting for caregivers’ assistance with feeding as their last vestige of social interaction; (B) discontinue medications that had been causing nausea or other GI side effects; and (C) shrink a comorbid brain tumor by reducing excess cerebral fluid. Allen claimed proxies and care providers are “excused from legal liability” if their actions are based on advance directives. I asked healthcare law and bioethics professor Thaddeus Pope for his opinion on this point. He wrote: “The consent of the deceased does not excuse what is otherwise a crime” and consent is not always a defense, which is “the very nature of the prohibition on assisted suicide” in every state. Regarding clinician's “prima facie duty to feed, the patient can waive [this] right,” but “there is some uncertainty whether this is assisting a ‘suicide’ in some states.” Pope therefore opined there is “risk and uncertainty in many jurisdictions.” Most important is this opinion with which we agree: providers are not exempt from legal liability if they follow illegal requests in directives, including euthanasia. Here are examples of why it is prudent to place food and fluid within the patient's reach: (A) it minimizes providers’ risk of being accused of euthanasia; (B) it makes it easier for proxies/agents to persuade providers to implement the order, “Cease assisted feeding”; (C) it can serve as an effective defense, if a provider is accused of a crime; and, (D) it may save the lives of a few patients, which makes it moral to “waste” food three or four times a day for the vast majority of patients (until they fall asleep) to give a small minority of patients the opportunity to survive. The last point is based on this fundamental belief: the life of every human being is sacred/precious. If my interpretation and analysis are correct, Allen may have committed the petitio principii fallacy (“begging the question”) that uses the conclusion of the argument in support of itself in the premise. To Allen's argument can be reduced PLADs who have the ability to cannot resume this function it is not necessary to prove that they cannot resume this function Allen healthcare professionals and their to comply with the order, “Cease assisted is the for patients to their goals. While such cannot Response to the of Trijntje M. Scheeres-Feitsma, Petruschka Jenny T. van der Steen, and van I agree with these that whether assisted feeding is or to the moral Their main argument is based on this incorrect my is that an advance directive can the future assisted my Perspective to this a of moral persuade those who otherwise the conditional order, “Cease assisted My other published and recommend several strategies to directives, to common which of is based on this by advance directives “cannot very and end-of-life for people with dementia and a and are the the are the of that people believe are right and a good are from or which some they are to or Yet both can change and neither has both types of agree on patients’ claim right to be allowed to die if their severe suffering cannot be since this is and patients’ I agree it is difficult for patients with dementia to their future and care I have revised a patient decision that has become an that a directive for dementia other includes and words written at the of to help dementia patients their for using cognitive to I agree that people living with dementia can be and experience of The companion Perspectives an in which a patient cannot recognize but can their that request ceasing assisted feeding as soon as the patient cannot recognize are since their requests could lead to Regarding the of with and a or a change of patients ACP must make a is to others to follow their the of which is to their ability to change their treatment preferences after they lose The other is to 100% to their proxies/agents by them to make decisions on their The of 100% is a strategy to persuade providers to and placing their in the of surrogates whose substituted is The protocol from family members, and as patients' directives. providers experience the and of the moral of whether to cease feeding at three times a could be by this PLADs have reached a condition that during ACP that they would cause irreversible, severe suffering and they have the right to I agree with using a than patients’ and from others to patients’ end-of-life goals. patients in the I recommend using to increase the clarity of orders and reduce conflicts their is just The protocol having a between providers and patients during ACP have the potential to reduce what treatment the patient and prevent such as the whose treating a legal against both and

Open access
Palliative Care and End-of-Life Issues
Patient Dignity and Privacy
Ethics in medical practice
Original source
Sep 13, 2022·Journal of Paediatrics and Child Health
1 cites
Respect for conscientious judgement in health care

Bernadette Tobin

Imagine that paediatricians are asked by the parents of a child with severe developmental disabilities to perform a hysterectomy and mastectomy on their daughter and give her hormones to restrict her growth. Imagine that, though the paediatricians sympathetically appreciate the motivation of the parents for this request – that restricting her growth will enable them to continue to care for her themselves, they think that they should not do these things to the child. Should we compel them to provide the procedures or accommodate their conscientious judgement? Or again. Imagine that a doctor is willing to undertake a first-trimester termination but is reluctant to terminate a pregnancy in the third trimester. Should we compel him to provide the procedure or accommodate his conscientious judgement? The general question to be considered is whether it is ever justifiable to compel performance by a doctor in violation of his or her conscience. Or, to put the question another way: What scope – if any at all – should be given to conscientious judgement in health care? Though there is now an enormous literature on the subject, most views sit on the range between, on the one hand, ‘there ought to be little or no scope for conscientious judgement in healthcare’ and, on the other, ‘there ought to be wide scope for conscientious judgement in healthcare’. Classic expressions of these two views were given some time ago by Julian Savulescu1 and Daniel Sulmasy,2 respectively. Though there are now other contributors to the discussion, and other points of view, a grasp of the early claims of these two doctor-philosophers will orient a newcomer to the shape of the debate. Savulescu argues that ‘[a] doctor's conscience has little place in the delivery of modern medical care. What should be provided to patients is defined by the law and consideration of the just distribution of finite medical resources, which requires a reasonable conception of the patient's good and the patient's informed desires. If people are not prepared to offer legally permitted, efficient, and beneficial care to a patient because it conflicts with their values, they should not be doctors’.1 This view was further elaborated in a ‘consensus statement’ adopted by a group of philosophers and bioethicists (Savulescu among them) who met at the Brocher Institute in Geneva in 2016.3 According to them, ‘[h]ealthcare practitioners’ primary obligations are towards their patients, not towards their own personal conscience. When the patient's well-being (or best interests, or health) is at stake, healthcare practitioners' professional obligations should normally take priority over their personal moral or religious views’.3 When practitioners have a conscientious objection, they ought to refer their patients to another practitioner who is willing to perform the treatment, and in emergency situations perform the treatment themselves. When they have a conscientious objection to providing treatment, they should be required to explain themselves. The burden of proof of the reasonability and sincerity of the objection should be on the practitioner. Reasons offered could be assessed by tribunals who could test their reasonability and sincerity. Hiring authorities should generally be allowed to make hiring decisions on the basis of whether the possible employees are willing to perform procedures to which others have a conscientious objection. Practitioners who are exempted from performing procedures on conscientious grounds should be required to compensate society for their failure to fulfil their professional obligations. Medical students should not be exempted from learning how to perform basic procedures they consider to be morally wrong. Practitioners should be educated to identify the basis of their objections and to reflect on the influence of cognitive bias in their objections. Savulescu gives four reasons for the view that there should be little scope for conscientious judgement in health care. Respect for conscientious refusal is inefficient because it causes patients to waste time, energy and money; it is inequitable because some patients, less informed of their entitlements, will fail to receive a service which they should have received; it is inconsistent with other practices in health care where doctors are not permitted to act on their own views; and it is unprofessional because ‘
 to be a doctor is to be willing and able to offer appropriate medical treatments that are legal, beneficial, desired by the patient, and part of a just health care system’.1 Savulescu's practical recommendation is straightforward. If people are not prepared to offer legally permitted, efficient, and beneficial care to a patient because it conflicts with their values, they should not be doctors.1 Sulmasy defends a very different view. He argues that ‘
 one should not readily empower the state to compel its physicians to alienate themselves from their deepest moral convictions’.2 Rather, we should exhaust every available alternative before requiring a doctor to act against his or her deeply held, self-identifying moral beliefs. Without claiming that conscientious objections can never be trumped by other considerations, he recommends that we set a very high bar before compelling performance in violation of conscience.2 Sulmasy's view is grounded in his account of the nature, and (from which account it follows) the primacy, of conscience itself. Conscience, he says, is the disposition to act in accordance with a commitment to uphold one's deepest, self-identifying moral beliefs. It is an expression of moral agency. Of course, a person's conscience can err, so acknowledging its primacy does not imply a belief in its infallibility. We can expect general agreement about some moral items of moral knowledge because they are so obviously true (e.g. ‘it is wrong to inflict unnecessary pain’). But given the imperfect nature of our moral knowledge and reasoning, moral disagreements between us are inevitable. Thus, because we are all moral agents, we owe each other mutual respect, both in the practice of health care and in the rest of life. How, then, does Sulmasy think we should go about determining whether it is legitimate for a state, a profession or an institution to compel performance by a doctor against his or her conscientious judgement? Sulmasy suggests that we decide the matter, in particular circumstances, by asking three questions about the practice – that is, the action or the refraining from action – for which a doctor seeks tolerance. First, we should consider whether the doctor's practice undermines or contradicts the principle of tolerance itself. If it does, then the practice does not deserve tolerance. So, for example, if a doctor were to refuse to treat a Jehovah's Witness for pneumonia simply because the doctor is hostile to people of that religious persuasion, her refusal would hardly deserve tolerance. But if she refused to operate on a patient because the patient would not allow blood transfusions, her refusal would deserve our tolerance. Second, we should consider whether the doctor's practice entails a substantial risk of serious illness, injury, or death for those who do not share the belief that is said to justify the practice. A serious risk of injury or death to a patient would constitute grounds for compelling the doctor's performance. But (and here's the nub of the current controversy) inconvenience, psychological distress or mild symptoms on the part of a person seeking a service would not constitute grounds for compelling the doctor's performance. For ‘mutual respect for conscience demands that we ought to be willing to be inconvenienced, if necessary, for each other's sake.’2 Third, we should consider whether the practice for which the doctor seeks tolerance is an action or a refraining from action. Greater moral justification should be needed to compel a doctor to perform an action than is, in general, required to compel a doctor to refrain from an action. No one would object if an institution compelled a doctor to refrain from proselytising her patients. But a much stronger ethical justification should be needed if an institution wanted to compel a doctor to perform a procedure to which she had a conscientious objection. It is clear that there is some common ground between the two positions, in particular that an emergency which threatens a serious risk of injury or death to a patient would constitute grounds for compelling a doctor's performance. It is also clear that there are profound differences between the two positions, differences explained or at least reinforced by differing views about (on the one hand) the nature and goals of medical practice and (on the other) about the nature and modus operandi of conscience itself. Savulescu's view treats conscience as a mere personal preference. Sulmasy's view treats conscience as a self-identifying commitment to personal integrity. Since doctors are increasingly being asked to intervene in situations which have little or nothing to do with treating disease, the profession, and indeed the wider society, needs to work out a principled way of resolving disputes about the proper scope of, and proper limits to, respect for conscientious judgement in health care. My hunch is that we will not be able to do this unless we clarify three things. First, the exercise of conscience is not to be understood as an expression of a mere personal preference (like a taste in food or wine): rather it is a serious self-identifying moral commitment, a matter of personal integrity. Second, the role of doctor is not to provide whatever the patient (or consumer) wants: rather it is to (offer to) treat injury or disease. Third, in a well-ordered society, the state's authority over doctors does not extend to compelling them to violate their consciences: on this particular matter, it is to preserve that kind of individual liberty which is at the heart of everyone's flourishing. Open access publishing facilitated by Australian Catholic University, as part of the Wiley - Australian Catholic University agreement via the Council of Australian University Librarians.

Open access
Ethics and Legal Issues in Pediatric Healthcare
Ethics in medical practice
Patient Dignity and Privacy
Original source
Feb 1, 2022·The Philosophical Forum
0 cites
Editor's note: On philosophy, a pandemic, and our international future

Alexus McLeod

This is my first issue as editor-in-chief of The Philosophical Forum, and the beginning of what I hope to be a long and fruitful tenure at the helm of this esteemed journal. I would like to first thank the publishing team at Wiley for entrusting me with the continuation of the legacy of the Forum, and for giving me the freedom to take it where I think it is possible for it to go. The journal has a history of innovation in our field, and I look forward to seeing where it can go from here and to playing a role in its newest iteration, with the help of many others. The central focus of my work at the Forum will be to publish high-quality philosophy from across the diverse array of traditions around the world. I aim to make the journal an example of a truly global philosophical enterprise, rather than one limited to the Anglo-American West or any other region, culture, or tradition. For far too long, philosophy in the West has largely gone on with minimal to no engagement with philosophers and philosophical traditions outside of Anglo-America, Western Europe, and ethnically related enclaves such as Australia and New Zealand. This has been to the detriment of philosophy as a discipline. Numerous philosophers have decried this over the years and have struggled to change things (so far with limited success).1 And the problem is far wider than philosophy. The problem in our field is merely a local representation of a much broader problem in the Anglo-American West, particularly in the United States. I would like to tell you a story that hopefully drives home the need for more projects of the kind I propose here. A story that, like so many of recent years, begins in the spring of 2020. It was then that I realized that the wider social unwillingness to appreciate and collaborate with our international neighbors was truly a global disaster. By the winter of 2020 I was tired. Professionally, personally, existentially. I was sick of fighting and losing the same battles over and over. I was tired of struggling to help the field of philosophy become more expansive, global, and interdisciplinary in its scope, to help foster methodological pluralism, to generate interest in pursuing the kinds of “off the beaten path” research that made philosophy the well-known synonym for the life of the mind that it's known as today. I encountered the same resistance again and again, the same promises to change followed by the continued philosophical neglect of most of the world and the entrenchment in a narrow way of understanding philosophy. However hard I and other like-minded philosophers pushed to change things, philosophy pushed back harder. It seemed that this work would always be ignored, seen as expendable, on the fringe, and devalued by many philosophers. Was I just going to work on these things and yell from the rooftops about globalizing philosophy for the rest of my productive years, only for this to fall on deaf ears in the United States and make no difference at all? My efforts seemed to be going nowhere. And then March 2020, a month we will all remember for the rest of our lives, brought an even more alarming realization. As our schools shut down and the world went online, global events showed that the problem was far bigger than just the field of philosophy, or even academia as a whole. At the beginning of the Covid-19 pandemic, doctors and medical experts in China were the only people in the world with either practical or research experience with the virus that eventually became known as SARS-CoV-2, and its associated disease. When the virus later took off first in Europe then later in the United States throughout March and into April of that year, scientists and physicians in the West struggled to understand the virus and the disease, in a race against the lightning-fast spread of the virus that quickly took hold of the world. Scientists and physicians in China, of course, had a head start of a couple of months on the rest of the world in understanding this virus. As the rest of the world looked on in shock in January and February 2020, the Chinese struggled to treat and understand the disease and the virus, as they imposed lockdowns across the country. It seemed for one brief moment that the virus might be contained in China, before it flared in late February in northern Italy, in Korea, then throughout Europe and to the rest of the world. By the time the virus took off in the United States in mid March, Chinese scientists and physicians working on the problem started to gain some initial understanding of the disease and the virus causing it. The obvious starting point for experts in the United States would be to consult with their counterparts in China, to learn from others who had been dealing with this new virus for months already. Almost inexplicably, that did not happen—at least in any large scale way. Not only did US-based experts routinely fail to turn to Chinese experts for help, but they often rejected those Chinese insights that did somehow make their way to US attention. Chinese doctors and scientists had some idea of the course of illness, as well as which strategies for treatment seemed to have some effectiveness. Of course, even in China they still did not have an enormous amount of knowledge about this new virus and its disease, but they had far more knowledge about it than anyone else in the world. Instead of devoting our effort to working with experts in China, the US largely chose to use the virus as yet another political weapon against China, spending more energy criticizing the Chinese government's responses to the increasing spread of the virus than we did trying to learn from their experiences with it or consulting with their scientists and physicians. Western media piled on, questioning whether Chinese data on the virus could be trusted, because of instances of data manipulation by the Chinese government in the past.2 Curiously, few of these same skeptics ever questioned Western data on the virus or Western medical interventions, despite a wealth of instances of data manipulation by Western pharmaceutical companies in the past in the interest of generation of profit,3 and the enormous influence of these companies over policymakers and regulatory bodies.4 The new and quickly spreading Covid pandemic was a medical crisis, not a political one. It was a crisis that threatened the rest of the world as much as it threatened China. In such a situation, one would hope that nations and people would be able to work together to focus on the crisis at hand. Yet things did not happen that way. Our prejudices, insularity, and political leanings won the day over knowledge, learning, and science, as they usually do. And many people suffered and died due simply to our unwillingness to learn from people who we saw as outside of our cultural and political sphere. This happened continually throughout the pandemic (and happens still today in the ongoing crisis of this virus). In 2021, researchers in Cyprus found evidence of a new hybrid variant of the virus combining two existing and circulating variants. This research was widely questioned and dismissed, as Western experts publicly claimed that the research was likely carried out incorrectly. There were so many expert naysayers in the West who seemed convinced (without evidence) that the finding was just a matter of sloppy research that Nature published an article “Deltacron: The Story of the Variant That Wasn't”.5 Unfortunately for the writers of this story, the variant very much was. Months later, when UK researchers also found the new variant, the same agencies and experts in the West that had dismissed the claims of the Cypriot researchers took the variant as “confirmed”, despite lack of peer-reviewed publication from these British researchers (which they had demanded from the researchers from Cyprus as a condition for trust). What was the difference, other than this time the British had found the variant, rather than the Cypriots? Similarly, when the Omicron variant of the virus first made its way through South Africa, where it was discovered, South African physicians and experts noted that the disease associated with the variant was proving less severe than those associated with earlier variants. Western experts manifestly dismissed this as mere anecdote, and unconfirmed—a position a number of South African experts publicly took issue with, even decrying it as racist.6 When British researchers later concluded, just as the South Africans had, that the Omicron variant caused less severe disease (and on the basis of no better data than what the South Africans had), it was somehow taken as more reliable by Western experts, treated as “confirmed”, and reported by Western media as now basically scientific fact. Apparently we have been misled for all these years about scientific method, and what truly confirms a hypothesis is not experimental demonstration, but being claimed by people with the right nationality. British and French claims are necessarily reliable and trustworthy, while Chinese, Cypriot, and South African claims are dubious, probably false, or at least in need of further confirmation by British, French, or American proclamation. There were countless similar situations that unfolded through the pandemic. But we can find the problem in other areas too. Look at what's covered in our news in the United States, for example. How often do those of you in the US see stories on current events in Asia, Africa, or the Americas outside of Anglo-America? Right now, go find a news source from India, Nigeria, Peru, or any host of other countries outside of Anglo-America and Western Europe. Next, find a US news source. Look at the US news page, and see how long it takes you to find a single story from any of the other newspapers featured on its page. Likely, you'll find few to none. Or walk into any bookstore in the US, and check out their sections on the histories of various European countries and then their sections on the histories of the various other parts of the world. I'll bet I can accurately predict the differences between these sections, because I've seen many of them over the years. In the sections on European countries, you'll find general histories of France, England, Germany, etc. Biographies of important figures in the histories of these countries. Probably specific topical selections, such as books on certain cities, important events, battles, cultural movements. In the section on Africa, if they have one, you'll find almost nothing. It's apparently a continent that barely exists, let alone has a history. You may find one or two books on travel, the geography of the continent, or the story of colonization, slavery, etc. If you can find anything at all, it's likely going to be a story of how white Western people colonially approached the continent. Asia and Latin America will get similar treatment, though you'll likely find a bit more on East Asia. China and Japan will have a few volumes, although 99% of what is available on China will be polemic treatises about how the Chinese are gaining influence in the world, and how this is a dangerous thing. You may find books with stark titles like How China Is Taking Over the World (not a real title as far as I know, but an example of the kind of book I have in mind). These are so prevalent that I coined a phrase years ago to refer to these: “enemy books”. The China section at your local bookstore (for those of you in the US) will probably consist of mostly enemy books, as will the section on the Middle East, where you can expect to find enemy books of the “why they hate us” variety—books about terrorists, extremism, the so-called problems of Islam, or dictators and tyrants. The situation in our bookstores mirrors our concerns in international relations, where the “non-West” is treated in an altogether different way. Its concerns are less important, its ideas less compelling, its conflicts less tragic or in need of our attention. It is rendered invisible to the West in a way the West is never invisible to the rest of the world. The West has yet to shed the colonial attitudes of its past, anachronisms which have no place in a world of independent and equal nations, a globally connected world facing a number of enormous crises requiring people to think and work together. I began to realize that there was no easy way out of this mess. Turning my back on philosophy wasn't going to enable me to find a place where internationalization was welcomed. Resistance to the rest of the world, I observed, was endemic to my culture. So I could either fight the battles here in academia, in a place I knew well, or fight them somewhere completely unknown. Even if I lost those battles here, and even if winning them would do little in the overall scheme of things, I stood a better chance here than anywhere else, even if that chance was close to zero. Even if I continued to fail to make a difference, I had no alternative but to try. And in some ways, the neglect of the world in the practice of professional philosophy in the West seems an easier problem to solve than in other areas. This neglect cannot be chalked up completely to linguistic differences. While there is a great deal of scholarship in philosophy (and every other academic field) around the world conducted in languages other than English, many scholars outside of the Anglo-American world can and often do write in English. Philosophy in large swaths of the world neglected in Anglo-American venues is done almost wholly in English. A good example of the neglect of English-language philosophy can be seen when we look at what philosophers often mean by the “English-speaking world”. The Philosophical Gourmet Report purports to rank philosophy departments in the English-speaking world, which it lists as including: the USA, UK, Canada, Australia, New Zealand, and This is a if it is truly to the English-speaking world. This not even most of the countries in which is the let alone the countries where is a widely and the or of For one, where is Or the nations of the Or English-speaking countries throughout Africa, such as Nigeria, and US lists often over nations from which international do not have to of English-language because is either the or a And if we to this number nations such as India, in which is widely and in which is conducted almost in English, the at least in all academic philosophy in the parts of the British for is done in English. Yet where are or African philosophers and philosophical traditions in venues in the In an enormous amount of philosophy in nations where is not the or a widely such as nations throughout Asia, Europe, the Middle East, and is done in English. Yet where is the work of these philosophers in venues in the For better or the has become a kind of academic to Latin in the European world, in the world, or Chinese in East history. This is not altogether a to the of the British the spread further across the than almost any only by and What the British started was by the global and influence of the United States in the late and which made the for a wider of people across the world. And as likely has the to with Islam, so the nations and also to a was from such cultural for the most because it on the basis of and situation similar to the spread of the the often and for its the use of the today the to with one another across and other So it out that we in the United States can the of many scholars outside of the Anglo-American world. they often their English-language work to our It is for the of our philosophy, for the of academia and the in which we are all learning, and the knowledge of the we with one learn from one with one There are far too many to learning, and knowledge today for to the of what we can together. at home and around the world, and other that on and work to the we our and work be international and globally because if we do not learn from one another and work together to solve the problems we such as and we may not at The same is the for philosophy, which is in of where it is the world on and it can and do Philosophy will not change and we change it is about our that is for this in the West and But we have to start and we can to even if at a from academic like philosophy where we can the of up to the world. can be at the of the for international of to our and being of the past There are many who are for The philosophers of the rest of the world are no less and than are those of in the “English-speaking as by the Philosophical Gourmet And those philosophers have ideas and insights that the rest of have never In medical science, when we neglect or new ideas in the rest of the world, we the of and when we neglect the philosophy of the rest of the world, we the of losing knowledge that we could have had, losing and to the philosophical problems that we a where scholars from around the world can be and hopefully by other scholars around the we up a the US and US-based academia to research from around the not just here in our narrow These are as yet but these my initial for what The Philosophical Forum might My hope is to together independent of philosophical or culture. And it out that this journal is a for such a Over the years it was in its first in and then its current in The Philosophical Forum has published a of philosophical work in very different areas. For much of its it had the aim of together what was long seen in the West as the two and of and This was an and the journal has this through its years in of the most work on the of philosophy has been published in this journal. It is now time to forward to a new the between different and But one might do we do this mean that we will no publish from US-based That we will international That we will of the philosophical as in the Anglo-American What I is to an philosophical not simply to to a different kind of The of Western philosophy and philosophy those who in them outside the will still be but they will be just two many equal to other rather than the or And the I take here to this is but that we have largely to do in Western simply with other scholars around the world, interest in their it them the effort to their and their work for a global In of The Philosophical Forum, we will focus more on philosophical traditions and between these in of time and culture, and In to being a home for a more international I aim to The Philosophical Forum experimental and work as This is a place to out new to the of what is to new and new as well as with There of course, a between the of together people in different traditions of and the of new of about philosophy any other and change happen not through that philosophy has yet to through and through new things, and The most mind in the world still has an that is by its and what it When we understand we realize that if we to truly we have to our with others. It has always been this despite the stories we tell to history so as to the story of of the of great innovation and of the These all with new between of with up one or to with The of philosophy and in the world with the of together and ideas from to the The of was by with and of ideas from China to and Europe. of the with the of the West into the areas of the in Asia and the of people and The in Europe with first the of the and then the between Europe and the Americas starting in the The with the of like the British and the this made not happen in a or in of cultural only happens when we one and the new ideas this cultural happen only with The Philosophical Forum of course, a journal in the United States. Yet when I took over as my was to make the journal together an international and was I on from the and a that is A be a place we think and work of of philosophical And I will do my to see The Philosophical Forum forward a and truly philosophical that might help new of we need on our In this in the first issue of my tenure as of The Philosophical Forum, I would like to philosophers and those working in areas with philosophy to this ongoing of of up philosophy to a truly global rather than one only different and help help what philosophy can and in the in of do not have to be in the of the way philosophy has been done in the past in the West, simply because it has been done that way. can do better than do

Open access
Ethics in medical practice
Original source
Aug 7, 2021·Voices in Bioethics
1 cites
A Public Health Reset Through Contractualism

Vishnu Subrahmanyam

Photo by Evgeni Tcherkasski on Unsplash
 ABSTRACT
 Public health ethics has been contingent on a political landscape leading to several operational hurdles, especially during global health emergencies. Several scholars have pointed out that liberal decision-making has prevented public health institutions from achieving their goals. Thus, the need for a substantive outlook on public health has never been stronger. First, this article highlights the ethical tension and limitations of a presumptive approach to public health that a vaccination policy might produce in a liberal political landscape. Second, influenced by the works of Angus Dawson, this article emphasizes the importance of a substantive approach to public health, especially in a post-COVID era. Last, it looks at how TM Scanlon’s theory of contractualism aids in framing a substantive approach to health policy design and the added advantages of the theory.
 INTRODUCTION
 A public health intervention like a vaccination program for COVID-19, let alone a mandatory one, faces difficulties in implementation as it presents a clash between the role of the government and liberty of its citizens.[1] The clash stems from public health operating in a liberal political landscape that accords great regard for individual liberty. The government, in good conscience, is right in feeling morally obligated to act in ways that serve to prevent the pandemic from escalating. To represent the citizens, governments and policymakers prioritize achieving and maintaining herd immunity. The tension of the state versus individual liberty questions the extent to which governments can go to implement a vaccination policy.
 In trying to balance the considerations of individual liberty and the scope of the state to impose an intervention, the Nuffield Council on Bioethics came up with a design known as the ‘intervention ladder.’[2] The takeaway from the intervention ladder is that the state has the burden of proof in justifying reasons for implementing a particular policy.[3] Such justified trade-offs envisioned from the intervention ladder have guided policymakers in their attempt to design and shape interventions. However, public health ethics and even the intervention ladder view public health through a presumptive or a moderate liberal lens.[4] In a presumptive approach or a moderate-liberal approach to public health, policymakers regard values like liberty or autonomy as more prominent when weighed against values like creation of public goods and their maintenance.[5] A libertarian approach favors liberty and autonomy even more strongly.
 The substantive view of public health holds that values, such as liberty and autonomy, do not automatically hold precedence over community-oriented values such as public goods creation.[6] Some have critiqued the intervention ladder endorsed by the Nuffield Council of Bioethics. Angus Dawson remarks that the intervention ladder as a metaphor prevents the act of climbing. He claims the ladder assumes that liberty is the only guiding principle in policymaking. Such a view neglects any responsibility the citizens have in achieving public goods and maintaining them.[7]
 The emphasis on the drawbacks of a presumptive approach, especially in a situation like the COVID-19 pandemic, leads us to question should public health undergo a redefinition? The approach in public health focusing on non-interference stems from traditional clinical bioethics.[8] However, I argue that public health ethics in a pandemic should accord less emphasis to individual liberty and evaluate every ethical value on a level playing field. Individual liberty provides less platform for action in situations where the community has not established herd immunity. Accountability for the harm principle and maintenance of public goods override concerns surrounding liberty.[9] Angus Dawson argues that with more participation in a vaccination program, protection of public goods from disease can be created faster.[10]
 Characterizing public health as an antagonist to individual liberty undermines the confidence in public health institutions and interventions for which public trust is vital. Although the government may propose a mandatory vaccination policy when voluntary measures fail to meet public health requirements, clear scientific evidence and accountability for public welfare should be the guiding principle. Thus, resetting the parameters gauging a public health intervention is the starting point to prepare for future pandemics.
 In Resetting the Parameters, Angus Dawson suggests that utilitarianism or contractualism could serve as philosophical frameworks that may aid in framing a substantive approach to public health.[11] Evaluating utilitarianism and contractualism according to the COVID-19 facts would help clarify which is better suited to framing a substantive public health approach.
 l. Is Utilitarianism Substantive?
 Under utilitarianism, the morbid circumstances of the COVID-19 pandemic urge us to act in ways that translate to maximizing the overall good. Utilitarianism is a philosophical theory that prides itself on maximizing the best of outcomes for the maximum number of people. In an ideal utilitarian framework, a morally right act does good for all. Utilitarians consider utility the single determining variable that should guide actions.[12] The actionable aspect of a utilitarian framework is its ability to quantify thresholds or markers that mostly dwell in the abstract.
 In Utilitarianism and the Pandemic, Savulescu et al. outline certain determinants as aids in applying utilitarianism.[13] Looking at the aids in the context of a mandatory vaccination policy in light of COVID-19, shows some pitfalls of utilitarianism. 
 The first utilitarian aid is to save the maximum number of lives.[14] Rightly so, an intuitive starting point in a pandemic with striking mortality rates is attempting to save the most lives. However, implementing and justifying a policy with the aim of saving the highest number of lives is complex. While a high number of deaths is a concern, it is reductionist to concentrate only on the end goal and not the means through which such a goal is attained.
 The second utilitarian aid is the length of life.[15] The length of benefit gained from an outcome is crucial for utilitarians. The duration of a benefit determines the quantity of good produced. As an extension, younger people should then, theoretically, count for more than older individuals in prioritizing benefits. Such prioritization has been a matter of concern during the COVID-19 pandemic. While it is true that younger people might tend to benefit more, the pathology of COVID-19 goes against such logic. Elderly populations have experienced disproportionately more severe cases. Therefore, prioritizing youth when the elderly are suffering more of the harm would be ethically contentious.[16]
 The third utilitarian aid is the quality-of-life post-intervention.[17] Through measures such as QALYs and DALYs,[18] utilitarians have attempted to quantify each individual's quality after an intervention. This quantification can result in connecting an individual’s quality of life to their social worth. From a utilitarian viewpoint, a person's ability to produce relevance in society becomes a key determinant in shaping public policy. By extension, people born with disabilities such as mental illness or late-stage dementia can be overlooked merely because they lack "social value.”[19] And yet, “taboo trade-offs occur when we are forced to put a finite monetary value on these sacred values [life, health, ability], when we acknowledge that there is a maximum ‘price’ that we want to pay to uphold values that should be of ‘infinite’ value.” [20]. As such, it is unethical to place a value on someone's life based on the duration or quality of life they may have after an intervention.
 Besides creating difficulty in assessing the quality of life, measures such as QALYs do not address the nuances in providing healthcare. In Economic Evaluation of Mental Health Interventions, Luyten et al. discuss several operational changes that account for these nuances.[21]
 Utilitarians believe in a moral indifference between actions and omissions as the fourth aid.[22] It does not matter how a result is achieved as long as it benefits the common good. Putting forward a bad policy is the same as not putting forward a policy. In the ever-changing and unpredictable dynamics of the COVID-19 pandemic, actions and omissions have different moral implications. Equating them often places an unfair burden on lawmakers, leaving them emotionally and morally exhausted as they weigh the advantages and risks of various outcomes.
 Actively avoiding social biases, feelings, intuitions, and heuristics is the fifth aid.[23] The pandemic elicits strong feelings and aggressively tests beliefs. During the pandemic, some profoundly troubling ethical dilemmas stemmed from bias. In a utilitarian system, a mandatory vaccination policy aimed at crossing the threshold for herd immunity may overlook groups of people who are vulnerable due to a lack of access to the social determinants of health. Attempting to avoid feelings and intuitions all the time does not always result in the creation of a fair policy. Anti-vaccination activists use emotion to further their cause, hence it is critical that politicians consider the feelings at stake for the general public when enacting a mandatory vaccination policy.
 While utilitarianism has benefits such as developing simple operationalizable concepts, providing a quantitative check, and a balance sheet of risks and benefits, it is based on an ethical dystopia. Utilitarian policies can treat people as a means to an end by focusing solely on outcomes. Utilitarianism rests on a presumptive outlook toward public h

Open access
Public Health Policies and Education
Ethics in medical practice
Healthcare cost, quality, practices
Original source
Dec 6, 2017·AACN Advanced Critical Care
12 cites
Reflections on How We Teach Ethics: Moral Failure in Critical Care

Georgina Morley, Jonathan Ives

Critical care is one of the most ethically complex health care specialties. Nurses working in this highly intense setting face additional stressors of high-tech interventions, resource scarcity, and increased workloads. Evidence from the United Kingdom and the United States suggests that these stressors are affecting patient safety and mortality, and nurses are feeling dissatisfied with their job and are burning out.1–4 Although we are able to keep patients alive longer, a growing body of research suggests that in many cases the life-sustaining treatments carried out in critical care settings are perceived by health care professionals to conflict with the patient’s best interests, creating moral distress among health care professionals.5,6 Nurses are often left out of decision-making processes, yet they are responsible for enacting the decisions made. This situation, according to Liaschenko,7 reduces nurses to artificial persons—persons who speak or act for others but whose priorities and concerns are subordinate to others. To navigate this complex environment, nurses need to be taught how to recognize and respond to a range of challenging ethical situations.Whereas ethics training for nurses can vary widely depending on the institution (and country), in this article we explore a common approach to clinical ethics education used in the United Kingdom. We do so because this method promotes a particular approach to understanding and framing ethical issues that arguably engenders misunderstanding about expected solutions, as we will discuss. Toby’s case, describing an ethical issue arising in critical care, is used to exemplify this argument and is referred to throughout the article to illustrate key points.Ethics education in nursing tends to be practical: the focus is on the identification of challenging ethical situations and developing and defending a resolution. Our experience of clinical ethics education (in the United Kingdom) reflects this focus; the aim is to enable the student and/or clinician to use ethical theory to identify and understand the ethical issues, begin to resolve the issues, and find acceptable solutions. In the process, students develop as competent moral agents and effective advocates. The development of the moral agent tends to be described in terms of developing an appropriate character, enabling students and/or clinicians to challenge the “silent curriculum” that might habituate clinicians into unethical practice. Rhodes and Cohen8(p50) argue thatA common pedagogic approach is to teach some theory (eg, consequentialist, deontological, virtue, principlist approaches) and then encourage students and clinicians to identify cases from their own practice, apply their theoretical knowledge, and develop their practical ethical skills through reflection. As described by Roff and Preece,9(p487)For students, assessment of this style of learning typically will comprise some form of written case study (given to them or drawn from their own experience) in which students identify the key ethical issues drawing on theory and then show, in a limited number of words, how they would resolve the case—justifying their resolution with reference to ethical theory. Our assumption is that how clinical students, excepting those who go on to specialist study in ethics, are taught about ethics will frame their approach to ethical deliberation throughout their clinical careers.Many practicing clinicians are encouraged to document discussions of ethical issues, agreed solutions, and supporting reasons in their clinical notes—something that the models of assessment they encountered as students seem to have prepared them for. Whereas there are advantages to this approach, one risk is that this strategy encourages students and clinicians to equate their development as competent moral agents with their ability to reduce a complex ethical problem to a series of concisely articulated ethical issues and tidy, theoretically neat, solutions—leading to a single satisfactory solution.The problem with this model in clinical ethics education (both before and after certification) is that it risks encouraging a simplistic understanding of ethical analysis and offers little scope to explore complexity and uncertainty. This approach does not prepare students for dealing with real-life ethical problems; instead, it primes students to believe that identifying and resolving an ethical issue should be easy and encourages the belief that (1) if they cannot articulate and resolve a problem concisely and neatly, then they are doing something wrong and may lack the apposite moral character; and (2) there is a correct resolution that, if found, ought to be satisfying. Promoting these beliefs has substantial problems, which we will discuss briefly.Ethical reflection permeates everyday clinical practice; for example, deciding whether to follow protocol and reposition a patient now or delay for half an hour to take a much-needed lunch break requires such reflection. A person might overlook the ethical nature of this sort of decision because no complex ethical reflection is required. The challenge lies in finding the motivation to do the right thing—to put one’s hunger aside for a few more minutes and reposition the patient. This sort of ethical issue can be articulated and resolved neatly and concisely because it is a simple case; although we might want to do one thing, we clearly ought to do another.The everyday nature of ethics—the microethics10 woven into the fabric of all our personal and professional interactions—is important and should not be ignored; however, we want to focus on more challenging and complex situations involving dilemmas, restricted options, or disagreement (sometimes referred to as conflicts) among moral agents that cannot be articulated or resolved simply or concisely.A dilemma occurs when one must choose between 2 mutually incompatible and similarly weighted obligations (eg, a perceived obligation to save and preserve Toby’s life vs a perceived obligation to minimize his suffering when the only way to do so is not compatible with preserving life).A restricted option problem occurs when one feels there is a right course of action, but for some reason that course of action is not available and is a nonoption. Thus, the range of options left to choose from are less desirable, and none seem morally optimal (eg, the health care team ideally would like to offer Toby a heart transplant but due to his necrotic lung he is not eligible).A disagreement problem occurs when 2 or more agents who have a stake in the decision disagree over the right course of action, and action cannot be taken until a resolution is found. In Toby’s case, the medical team does not want to offer VV-ECMO if he shows signs of deteriorating, but wants to continue other life-sustaining treatments such as continued invasive ventilation; the nursing team believes that they are prolonging Toby’s inevitable death, contributing to his continued suffering, and believes that all life-sustaining treatments are futile; whereas Jenna has requested VV-ECMO and wants to continue all life-sustaining treatments.These kinds of decisions are never simple, nor can their ethical complexity be summarized or resolved in a short piece of written work or by rote ethical analysis. By definition, a challenging ethical issue is complex and requires a great deal of thought and analysis. To assess competency as a moral agent and/or moral character based on a student’s or clinician’s ability to reduce and articulate a response in a short written assignment or verbal analysis sends the wrong message and communicates unrealistic success criteria.Most ethics educators likely are aware of this complexity and are aware that not all clinical ethics education follows this model. However, we are less sure that students or clinicians are aware of the shortcoming of this model; thus, their own measure of success in dealing with ethical issues becomes associated with a concise and relatively sanitized written summary or analysis that demonstrates understanding and clear resolution, which seems unrealistic. Furthermore, as clinical curricula become more crowded and resources become increasingly competitive, pressure increases to reduce ethics assessments to simple “pass or fail” and multiple-choice and short-answer questions to assess ethics competency. This pressure makes it important to reflect on the problems associated with this kind of assessment and to consolidate counterarguments so that such simple assessments might be resisted.Moral dilemmas, restricted options, and disagreement features include the following: (1) perhaps not having a clearly discernible correct course of action, and (2) even if a course of action is identified and morally preferable, moral residue may still be felt after taking the preferable path. These 2 points can be seen in Toby’s case because it illustrates a moral reason to withdraw treatment and a moral reason to continue treatment. What ought to be done for Toby is not clear, and no theoretical approach provides an answer. Arguments for either course of action could be made from any theoretical perspective—many courses of action could be argued as ethically defensible and reasonable. In a situation like Toby’s, no solution is unequivocally correct, and it seems unlikely that we can select a course of action without also feeling we have done something wrong.The term moral residue often is used to refer, in the context of moral distress, to the build-up of negative emotions that occurs after we allow ourselves to be morally compromised. Webster and Baylis11(p208) characterize moral residue asEpstein and Hamric12 describe moral residue as the painful feeling that remains after a morally distressing event that, unless satisfactorily resolved, builds up over time and amplifies negative responses to subsequent morally distressing events, creating a “moral residue crescendo.” Moral residue arises in these types of arguments when the agent feels a wrong has been done; thus, negative feelings are associated with a perceived moral failure and the logically necessary assumption that moral success was possible.We, however, will be using the term moral residue as it was used originally: to refer to the lingering feeling of having done wrong even when one has made a decision that feels right.13,14 This concept was used to argue for the existence of genuine moral dilemma—the special case of moral conflict in which an agent recognizes that (1) moral reason can be used to perform 2 or more actions, (2) not all actions can be performed, and (3) there is no reason to choose one action over another. In such a situation, avoiding moral failure seems impossible because by choosing one course of correct action we fail to perform another correct course of action.The term unavoidable moral failure15 derives from the fact that we must choose between 2 conflicting moral requirements, violating one for the sake of the other. The presence of moral residue after having made a moral decision could be evidence that the agent faced a genuine moral dilemma. Furthermore, this moral residue is an appropriate response to this situation.In Toby’s case, the health care team could feel justified making the decision to withdraw ECMO altogether and yet feel they have wronged Toby and his wife, especially if the decision results in Toby’s death. A wrong has been done, even though the wrong occurred during the process of doing something right. The same could be said of the decision to continue to treat Toby. The decision is ethically defensible and arguably correct, yet in making the decision to continue treatment a wrong seems to have been done because of the real possibility that it might only prolong Toby’s dying process and associated suffering.Debate continues over whether moral residue can be used as proof of the existence of genuine moral dilemmas. One might argue that it is nonsensical to suggest that someone can do wrong while doing right, since choosing option A over option B means that one has decided that A is the right course of action; thus, by definition, all other actions would be wrong.Feeling guilt after having made such a decision could be thought of as irrational.15 Tessman,15 however, argues that labeling this guilt irrational assumes that all perceived wrongs can be compensated for by having done right overall. This viewpoint requires a hyperrational agent who can endorse a conception of “the right” such that the perception of having done right renders any contributing action or consequence similarly “right,” thereby avoiding feeling any regret or loss because of unfulfilled values.People rarely, however, display that kind of rationality. Tessman15 argues that because we often encounter impossible, nonnegotiable moral requirements, we ought to accept that we will unavoidably experience moral failure. In a dilemmatic situation, ethically sensitive people will always be cognizant that in choosing one moral requirement they have failed to perform another. Even when a decision is made that is inclusive, fair, and considered, rarely can a person be certain that the decision was correct and may continue to have feelings of doubt or regret. Doubt is a constant feature of ethical decision making in complex cases. In fact, certainty in the face of ethical complexity may suggest a failure to understand that complexity and may indicate a lack of moral character.We need not resolve the debate about moral failure to learn something important from it. There are 3 key learning points that we can take away that should inform approaches to teaching and learning about clinical ethics: (1) resolution, (2) compromise, and (3) incorporation of concepts.Feelings of guilt, remorse, or regret may be unavoidable features of being in an ethically complex situation. Even when we feel we have done the right thing we still might have negative feelings about our decision; thus, finding an ethical resolution is not the same as finding personal satisfaction or personal resolution.Arriving at a solution that one is completely happy with is not a marker of ethical success or competency. Rather, accepting these feelings as part of being a moral agent may mitigate the feelings that are associated with the accumulation of negative emotions and moral distress. Whereas one may feel guilt or regret because of unavoidable moral failure, unless that person is culpable, he or she is not blameworthy.15 For example, culpability might flow from having failed to deliberate properly, listen to all relevant voices, or create spaces for respectful discussion.There are, then, 2 kinds of moral failure: culpable and nonculpable. Culpable moral failure might arise when one has reached a decision that one regrets or feels guilty about due to not deliberating properly. Moral residue, as defined in this article, is always non-culpable because moral residue follows from having engaged in proper deliberation but nonetheless feeling one has done wrong.When faced with having to choose a course of action in response to a complex and uncertain ethical problem, sometimes the only way to move forward may be to find principled (ie, integrity-preserving) compromise. As Huxtable16(p140,141) argues,Thus, even though the clinical team feels they should withdraw care from Toby, they might nonetheless try other options to enable them to meet their obligations of beneficence to his wife. Such a compromise may not represent a perfect solution, but may be the best arrangement that can be achieved; it might be too much to expect to find a perfect solution to such a complex problem.The problem with compromise, however, is that the concept often is used and understood in a pejorative sense; for example, when Webster and Baylis talk about moral residue occurring after allowing oneself to be “compromised.”11 Although compromise may not always be desirable, it may sometimes be necessary. According to Benjamin,17 compromise makes the “best of a bad situation.” Ives18(p310) also argues thatA potential problem arises from attempting to combine compromise with the goal of coherence. Both might focus on the value of the process of deliberation over the outcome such that (1) the compromise position might not matter as long as a compromise is achieved and all stakeholders are willing to sign up to the compromise, and/or (2) that knowledge of having undertaken a rigorous process of ethical deliberation might, in part or in total, alleviate feelings of moral residue, because participants in the decision can have confidence that they have done the best they could.We would be wary of a focus on process as a justification for outcome. Whereas process is important for many reasons, such as transparency, agency, and accountability, it is difficult to see how the process of ethical deliberation and agreement can confer justification for the decision. Huxtable’s endorsement of compromise is not just a call for decision makers to reach agreement16; the plea is for “principled compromise,” wherein agents are required to make compromises that can be justified by principles external to the process of compromise itself (ie, the compromise position is not legitimate just because it is agreed to).A person who is not part of a robust process of deliberation and has not experienced moral residue may have misplaced faith in the justificatory power of process. Moral residue would survive any feeling that the decision is justified, whether by process or principle. If, conversely, one is unsatisfied with the process, one is unlikely to feel the decision was correct, and so the conditions for moral residue would not have been met. For these reasons, we are wary of drawing the conclusion that a focus on robust processes might be a panacea. Although ethics education can and should facilitate learning about how ethical deliberation can occur, too much emphasis on process runs the risk of leading to empty proceduralism, wherein the process of deliberation comes to replace justification.However, process still has significant value, which is derived from being able to distinguish culpable moral failure (about which we ought to feel bad) and nonculpable moral failure (about which we have no need to berate ourselves). Having confidence in a robust process can help guide us in determining whether we are experiencing nonculpable moral residue or culpable guilt.Clinical ethics educators should incorporate the concepts of moral failure and moral residue into teaching and learning—not to encourage indifferent or immoral behavior, but to better prepare clinicians for the realities of the experience of having to make difficult ethical decisions in the face of the complex and challenging ethical situations and to better understand what a solution might look like.Real-life ethical decision making does not mimic the sanitized assessments clinicians are often required to undertake in a teaching environment, and that expectations of what success might look like need to be adjusted to something more realistic.As illustrated by Toby’s case, a complex, challenging clinical situation will often have multiple justifiable solutions; it is unlikely that any single solution will feel completely satisfactory. Whatever the outcome, the participants would likely experience some form of moral residue. Assuming that decision makers have deliberated properly and arrived at a solution they believe to be correct, they may still feel they have done something wrong. Health care clinicians need to understand that this feeling is moral residue, which is an unavoidable consequence of trying to manage the often-impossible demands of morality within critical care rather than a culpable moral failure. Moral residue is a failure to reconcile the irreconcilable and not a failure of moral character or a sign that one is an moral believe that clinical ethics education should prepare nurses and other clinicians for the experience of moral residue and such education should use this concept to distinguish between moral that are culpable and nonculpable. This learning strategy should better enable nurses and other clinicians to and respond to negative feelings that after they have made a decision in an ethically challenging such a clinicians can better manage expectations about what an acceptable ethical solution might look and feel

Open access
Ethics in medical practice
Palliative Care and End-of-Life Issues
Patient Dignity and Privacy
Original source
Nov 13, 2013·The Journal of Medicine and Philosophy A Forum for Bioethics and Philosophy of Medicine
3 cites
What Are Our Moral Duties? Critical Reflections on Clinical Equipoise and Publication Ethics, Clinical Choices, and Moral Theory

Mark J. Cherry

Since action for itself requires a particular content and a determinate end, whereas duty in the abstract contains nothing of the kind, the question arises: what is duty? For this definition [Bestimmung], all that is available so far is this: to do right, and to promote welfare, one’s own welfare and welfare in its universal determination, the welfare of others. (Hegel, 1991 [1821], 161, §134) Nothing in particular follows from general concepts of the right, the good, the just, or the virtuous; not even in bioethics. Even to sort useful information from noise, one must first specify a moral context within which to make decisions. Without particular content, morality cannot provide definitive guidance for choosing among different accounts of human flourishing or the proper ranking of virtues, much less how to proceed when the right and the good conflict.1 If morality is to be more than a mere formalism—for example, the empty repetition of rhetorical phrases, such as “respect patient autonomy” or “preserve human dignity”—then particular content must be specified to orient proper decision making.2 Among the challenges is that medicine is an applied science as well as a social endeavor. Medical science and the treatment of patients are always set within particular cultures and human interests. Consequently, the actual practice of health care involves an overlapping set of communities (scientific, moral, religious, and political) striving to understand and to manipulate the world in ways that humans find socially useful, morally appropriate, aesthetically pleasing, or otherwise fitting. As a result, medical reality and the expectations of clinical judgment are inevitably historically and culturally conditioned. In turn, such taken for granted background conditions impact our appreciation of moral obligations. This issue of The Journal of Medicine and Philosophy brings together three clusters of essays, focused in turn on research ethics, clinical ethics, and moral theory. Despite the array of topics, each author carefully explores core questions of bioethics: Which moral standard? Whose account of moral obligations ought to guide health care as both a theoretical and a practical endeavor? The first cluster of articles explores moral standards for guiding medical research. In medicine, one must abandon the assumption that accepted treatments are good simply because they are accepted. Instead, one must critically examine the standard of care together with new and innovative alternatives. Thorough scientific research together with robust scholarly debate is integral to reigning in the untutored human desire to ameliorate pain and suffering so that treatments do more benefit than harm. Moreover, it is difficult to know truly in medicine. Problems such as spontaneous remission and natural cures, physician remembrance of therapeutic triumphs more clearly than failures, the psychology of discovery, and the placebo effect distort judgments of a treatment’s effectiveness. At times and in various ways, patients, physicians, and scientists see what they anticipate. Medicine adds to these challenges the all too human urge to help those in need. Yet, as the history of medicine pays witness, many interventions do more harm than benefit. Human suffering caused by ill-founded but well meaning treatments has been significant. As Gelfand (2013), Meyerson (2013), and Potts et al. (2013) each make clear, rigorous scientific research and open scholarly debate are central to the advancement of medical practice and the protection of patients. Gelfand and Meyerson document, for example, the way in which clinical research with human subjects often involves a conflict between judgments regarding the proper treatment of patients and appropriate methods for obtaining good scientific data. Physicians who are both researchers and clinicians have competing professional interests, for example. The primary goal of clinicians is generally doing what is best for one’s patients within certain constraints, such as informed consent, the standard of care, and resource availability. Clinicians recommend treatments and interventions based on what they believe is in the best interests of particular patients. The primary goal of researchers, however, is the discovery of data to address research questions. The objective in a scientific inquiry is to follow an approved protocol to obtain data, to test research hypotheses or theoretical constructions, and to contribute to the base of scientific knowledge. Researchers are, however, constrained in how they may use subjects who may or may not benefit from the study design. Particular moral standards, such as “clinical equipoise,” the “precautionary principle,” and prohibitions against lying, are routinely identified as essential for fulfilling our duties to protect patients from unethical researcher conduct. Consider, for example, “clinical equipoise” which requires that clinician-researchers terminate a study when accumulated evidence so thoroughly supports one treatment arm that “the committee of investigators believe no open-minded clinician informed of the results would still favor” the other treatments being tested (Freedman, 1987, 145; cited in Gelfand, 2013, 593). Is clinical equipoise an adequate guide to appropriate ethical research on human subjects? Gelfand concludes that clinical equipoise is both morally and conceptually problematic. Morally, the difficulty is that clinical equipoise, if taken seriously, requires shutting down too many well-structured randomized clinical trials as unethical. Conceptually, the challenge lies in attempting to flesh out the ambiguous “open-minded clinician” standard. Although there is some disagreement concerning who should determine whether clinical equipoise exists, I will assume, as do most others, that this determination should be made by the physician-researcher conducting the randomized clinical trial. Presumably, the physician-researcher should begin this process by attributing knowledge of preliminary studies to these clinicians. In addition, she would have to assume that clinicians in her clinical community were aware of the general facts/theories/beliefs relevant to the clinical trial. Put differently, whether one will conclude that clinical equipoise exists depends, among other things, on what beliefs one attributes to members of the clinical community. (Gelfand, 2013, 594–95) Gelfand rightly notes that it is a very common psychological phenomenon to conclude that those who disagree with you “. . . are wrong or unaware of all the relevant facts or for some reason misunderstand the issue. Many of us often assume that if others truly understood the issues, they would agree with us” (2013, 595). Clinical equipoise, he argues, assumes that all “properly open-minded” clinicians who are informed regarding the research data would share the same background information, beliefs, standards for evaluation, and interpretation of results, as well as clinical or research goals. Having reasoned in such a fashion, however, once the physician-researcher conducting the trial concludes that clinical equipoise does not exist, he may terminate important clinical trials before adequate data can be collected. Researchers who disagree with such a conclusion may be easily ruled out as failing to be properly “open minded.” The “precautionary principle” raises related challenges. As with other human endeavors, medicine can become infatuated with the seemingly original and progressive. That technological or surgical innovations are new, however, guarantees neither superiority nor safety. The underlying rationale of the precautionary principle is to treat unproven scientific innovation with appropriate regulatory caution. When there is good reason to conclude that an innovation may cause serious harm, even though uncertainty exists regarding the probability or level of risk, the precautionary principle holds that regulatory action should proceed as if such innovation is in fact dangerous. Meyerson argues that the core difficulty with the precautionary principle is that it is unduly vague. Again, there is a need for the specification of a particular standard. All choices involve risk. How much risk and of what sort is morally acceptable? Taken too weakly, the precautionary principle offers almost no guidance: “. . . if all that is meant by the precautionary principle is that the absence of scientific certainty does not necessarily justify the refusal to regulate risky new technologies, then it is hard to see what is supposed to be distinctive about the guidance it offers” (Meyerson, 2013, 610). On the other hand, understood in a very strong manner, the principle rules out beneficial innovation: “At its strongest, the precautionary principle insists that potential benefits should be foregone unless it can be shown that they pose no risk at all. This is obviously an unacceptable position” (Sunstein, 2005; Meyerson, 2013, 610). Seeking to clarify a more moderate approach, Meyerson argues that there should be a general presumption in favor of restricting innovative technologies when they appear to pose a serious risk of harm. Proponents of the new technology, she concludes, bear the burden of proof to demonstrate the utility and relative safety of the innovation. Applied to the example of innovative surgical techniques, Meyerson argues that such a moderate approach helps to avoid the dangers that occur when surgeons are prone to bias in favor of new innovations, especially when they have a financial stake in the use of the invention, while also permitting advocates to demonstrate the safety and effectiveness of new technology. Discerning readers might at this point wish to raise the following questions: What are the risks of a bias in favor of the status quo? How should we assess the dangers of delaying innovation?3 What if, for example, scientific debate is stifled so as to preserve the status quo? In this issue, Potts et al. (2013) explore just such key concerns. For example, should researchers self censure scientific results that might undermine public confidence in medical judgment, such as the diagnosis of brain death? And, should professional journals refuse to publish articles that call into question current medical orthodoxy on such matters? Recent debate has brought brain-oriented criteria for determining death and donation after cardiac death policies into public scrutiny (see, e.g., Bernat, 2010; Iltis and Cherry, 2010; Khushf, 2010; Miller, Truog, and Brock, 2010; Shewmon, 2010; and Veatch, 2010). Some proponents of organ transplantation have argued that responsible scholarship requires refusing to publish any such results. As Potts et al. summarize: Some articles call for a closing of the debate over the criteria for death since such criteria are related to organ donation, and an ongoing debate about death criteria may negatively affect the public’s willingness to donate. They suggest allowing only ‘responsible scholarship’ in the area (according to which ‘irresponsible scholarship’ is considered to be critiquing brain-based criteria for death. . . . (2013, 626) Such debate, critics argue, creates unnecessary doubt among members of the public regarding the certainty of brain-oriented determinations of death and, consequently, for the appropriateness of procuring organs from donors who have been declared dead based on such criteria. To further complicate matters, institutional policy for determining that brain-based criteria for death has been satisfied may vary among institutions. Potts and his colleagues argue that without sustained and open debate, the harms caused by adherence to the status quo may never be adequately exposed. Is it morally appropriate to stifle or otherwise censor open-minded and scientific debate so as to further one’s preferred social goal, such as greater access to organ transplantation (or, perhaps, ever more government action on so-called human-caused global warming)? The next brace of essays turn the discussion to moral duties in clinical ethics. Mills (2013) and Reed (2013) focus on elements of procreative liberty, Stoyles and Costreie (2013) rethink voluntary euthanasia, whereas Cohen and Shapiro explore whether placebo treatment violates moral prohibitions against lying. To begin, Mills argues that reproductive liberty ought to be appreciated as a positive entitlement: “that is, a freedom to make oneself according to various ethical and aesthetic principles or values” (2013, 639). Mills contends that Michel Faucult’s analysis of the “practice of liberty” together with a naturalistic approach to rights entails at least limited positive claim rights in support of reproductive autonomy, “. . . one that requires that reproductive projects are promoted rather than simply honored, for example” (2013, 655). Reed in turn shifts our attention to an exploration of Plan B “emergency” contraception. Reed’s conceptual geography maps the moral location of emergency contraceptive pills relative to the ongoing abortion debates. He argues, for example, that “If we know that there are no postfertilization effects, then emergency contraception becomes morally similar to barrier methods: it prevents pregnancy without interfering with a fertilized egg” (2013, 670). However, insofar as Plan B contraception has a postimplantation effect, resulting in the abortion of a fetus, then abortion is an intended consequence of emergency contraception. As a result, abortion would not rightly be described as an unintended side effect of taking Plan B contraception; utilizing emergency contraception would be morally similar to other forms of early abortion. How should we appreciate reproductive liberty? And, which moral context applies to such choices? Sometimes to gain insight into the proper standards for clinical ethics, we must learn to see moral debates from new perspectives. The next two essays seek to reframe the bioethical debates regarding euthanasia and patient deception in terms of the “patient’s interests.” Stoyles and Costreie (2013) hold that the euthanasia debate has gone astray by emphasizing the importance of such distinctions as voluntary, involuntary, and nonvoluntary euthanasia. The question, they believe, is whether the practice of euthanasia accords with the “patient’s interests.” Insofar as euthanasia advances a patient’s interests, it ought to be appreciated as morally permissible. Similarly, Cohen and Shapiro conclude that while lying to patients is, all things considered, morally wrong, placebos are permissible precisely when they advance the patient’s interests in ways comparable to other forms of therapy. For example: Placebo analgesia refers to the reduction in pain following the administration of an otherwise inert substance, e.g., administering a starch pill (that does not directly alter pain physiology), which is believed by the subject to be an analgesic drug. The administration of a placebo is not inert, however, and its effects far from imaginary. Most strikingly, various findings show that placebo analgesia can under certain conditions mimic the actions of opiates on the opioidergic system, the most potent pain reducing system of the body. (2013, 699) An undue focus on deception, they argue, inappropriately skews the moral analysis. Insofar, as placebo treatment has an appropriate therapeutic effect comparable to other forms of therapy, it should not be morally ruled out. In each case, the authors challenge the reader’s perspective on such bioethical questions so as to assist us to see our moral duties anew. The final two essays take a conceptual step back from applied ethics, actively to engage moral theory. Sjöstrand et al. (2013) argue that preserving the value of patient autonomy may require medical paternalism, whereas Pamental (2013) explores the utility of pragmatism as a moral theory to guide bioethical decision making. On the one hand, Sjöstrand et al. (2013) hold that there are good reasons to support patient autonomy and to promote autonomy as a value in healthcare decision making. As a practical matter, however, sometimes weak forms of paternalism ought to be accepted to promote patient autonomy over the long term. Theoretical clarity regarding autonomy as a value is necessary, they argue, if we are to determine how best to respond to patient choices that appear to limit autonomy. If only capacity is valuable, paternalism is easily justified as soon as a patient acts or decides in a way that threatens her future autonomy. It seems strange to claim that autonomy is valuable, but that there is no value in actually having one’s autonomous decisions regarding important things in life respected. If exercise of autonomy is also valuable, paternalism for the sake of autonomy is less easily justified, since any infringement of a person’s exercise of her autonomy would be of direct negative value. (2013, 719–20) Pragmatism, on the other hand, Pamental argues, embraces the view that the role of philosophy is to change the world. Pragmatism is a form of what he terms “radical empiricism”: “At its heart, radical empiricism presupposes two things: first, that experience is more than simply phenomenological . . . [and second] experience can provide us with both the tools for making things better and the criteria for evaluating what better means” (2013, 728). Moreover, pragmatism is a form of moral contextualism: “. . . any feature of a situation is potentially morally significant, but that even generally accepted moral features are not always so” (2013, 737). As a result, moral principles are not absolutes; they are contingent and relative to the subjective interests of particular individuals, who themselves are situated within particular cultural and social backgrounds. It is this practical starting point, he argues, that both sets the moral context and directs moral inquiry in the clinical setting. What are our moral duties? In terms of which ranking of cardinal human goods and right-making conditions ought we to evaluate the moral significance of medical research on human subjects, reproductive liberty and abortion, organ transplantation, medical deception and euthanasia? As this issue of The Journal of Medicine and Philosophy makes clear, the field of bioethics faces a plurality of moral rationalities that are grounded in various rankings of cardinal values and right-making conditions, calculations of harms and benefits, claims to virtue or vice, as well as competing understandings of human flourishing. Different rankings and accounts of right-making conditions also presume divergent rules of moral evidence and valid moral inference. All such standards also appear to be deeply embedded within and conditioned by particular cultural and social circumstances (see, e.g., Cherry, 2012; Delkeskamp-Hayes, 2012; Engelhardt, 2012). Insofar, as all we have to work with are our and contingent subjective of itself to be once precisely on is the of all

Open access
Ethics in medical practice
Ethics in Clinical Research
Ethics and Legal Issues in Pediatric Healthcare
Original source
Aug 1, 2013·Soundings An Interdisciplinary Journal
105 cites
Who Shall Live When Not All Can Live?

James F. Childress

Who shall live when not all can live? Although this question has been urgently forced upon us by the dramatic use of artificial internal organs and organ transplantations, it is hardly new. George Bernard Shaw dealt with it in “The Doctor's Dilemma”: Sir Patrick.Well, Mr. Savior of Lives: which is it to be? That honest decent man Blenkinsop, or that rotten blackguard of an artist, eh?Ridgeon.It's not an easy case to judge, is it? Blenkinsop's an honest decent man; but is he any use? Dubedat's a rotten blackguard; but he's a genuine source of pretty and pleasant and good things.Sir Patrick.What will he be a source of for that poor innocent wife of his, when she finds him out?Ridgeon.That's true. Her life will be a hell.Sir Patrick.And tell me this. Suppose you had this choice put before you: either to go through life and find all the pictures bad but all the men and women good, or go through life and find all the pictures good and all the men and women rotten. Which would you choose?1 A significant example of the distribution of scarce medical resources is seen in the use of penicillin shortly after its discovery. Military officers had to determine which soldiers would be treated—those with venereal disease or those wounded in combat.2 In many respects such decisions have become routine in medical circles. Day after day physicians and others make judgments and decisions “about allocations of medical care to various segments of our population, to various types of hospitalized patients, and to specific individuals,”3 for example, whether mental illness or cancer will receive the higher proportion of available funds. Nevertheless, the dramatic forms of “Scarce Life-Saving Medical Resources” (hereafter abbreviated as SLMR) such as hemodialysis and kidney and heart transplants have compelled us to examine the moral questions that have been concealed in many routine decisions. I do not attempt in this paper to show how a resolution of SLMR cases can help us in the more routine ones which do not involve a conflict of life with life. Rather I develop an argument for a particular method of determining who shall live when not all can live. No conclusions are implied about criteria and procedures for determining who shall receive medical resources that are not directly related to the preservation of life (e.g. corneal transplants) or about standards for allocating money and time for studying and treating certain diseases.Just as current SLMR decisions are not totally discontinuous with other medical decisions, so we must ask whether some other cases might, at least by analogy, help us develop the needed criteria and procedures. Some have looked at the principles at work in our responses to abortion, euthanasia, and artificial insemination.4 Usually they have concluded that these cases do not cast light on the selection of patients for artificial and transplanted organs. The reason is evident: in abortion, euthanasia, and artificial insemination, there is no conflict of life with life for limited but indispensable resources (with the possible exception of therapeutic abortion). In current SLMR decisions, such a conflict is inescapable, and it makes them so morally perplexing and fascinating. If analogous cases are to be found, I think that we shall locate them in moral conflict situations.An especially interesting and pertinent one is U.S. v. Holmes.5 In 1841 an American ship, the William Brown, which was near Newfoundland on a trip from Liverpool to Philadelphia, struck an iceberg. The crew and half the passengers were able to escape in the two available vessels. One of these, a longboat, carrying too many passengers and leaking seriously, began to founder in the turbulent sea after about twenty-four hours. In a desperate attempt to keep it from sinking, the crew threw over board fourteen men. Two sisters of one of the men either jumped overboard to join their brother in death or instructed the crew to throw them over. The criteria for determining who should live were “not to part man and wife, and not to throw over any women.” Several hours later the others were rescued. Returning to Philadelphia, most of the crew disappeared, but one, Holmes, who had acted upon orders from the mate, was indicted, tried, and convicted on the charge of “unlawful homicide.”We are interested in this case from a moral rather than a legal standpoint, and there are several possible responses to and judgments about it. Without attempting to be exhaustive I shall sketch a few of these. The judge contended that lots should have been cast, for in such conflict situations, there is no other procedure “so consonant both to humanity and to justice.” Counsel for Holmes, on the other hand, maintained that the “sailors adopted the only principle of selection which was possible in an emergency like theirs,—a principle more humane than lots.”Another version of selection might extend and systematize the maxims of the sailors in the direction of “utility”; those are saved who will contribute to the greatest good for the greatest number. Yet another possible option is defended by Edmond Cahn in The Moral Decision. He argues that in this case we encounter the “morals of the last days.” By this phrase he indicates that an apocalyptic crisis renders totally irrelevant the normal differences between individuals. He continues, In a strait of this extremity, all men are reduced—or raised, as one may choose to denominate it—to members of the genus, mere congeners and nothing else. Truly and literally, all were “in the same boat,” and thus none could be saved separately from the others. I am driven to conclude that otherwise—that is, if none sacrifice themselves of free will to spare the others—they must all wait and die together. For where all have become congeners, pure and simple, no one can save himself by killing another.6 Cahn's answer to the question “who shall live when not all can live” is “none” unless the voluntary sacrifice by some persons permits it.Few would deny the importance of Cahn's approach although many, including this writer, would suggest that it is relevant mainly as an affirmation of an elevated and, indeed, heroic or saintly morality which one hopes would find expression in the voluntary actions of many persons trapped in “borderline” situations involving a conflict of life with life. It is a maximal demand which some moral principles impose on the individual in the recognition that self-preservation is not a good which is to be defended at all costs. The absence of this saintly or heroic morality should not mean, however, that everyone perishes. Without making survival an absolute value and without justifying all means to achieve it, we can maintain that simply letting everyone die is irresponsible. This charge can be supported from several different standpoints, including society at large as well as the individuals involved. Among a group of self-interested individuals, none of whom volunteers to relinquish his life, there may be better and worse ways of determining who shall survive. One task of social ethics, whether religious or philosophical, is to propose relatively just institutional arrangements—which criteria and procedures of selection is most satisfactory in view of the human condition (man's limited altruism and inclination to seek his own good) and the conflicting values that are to be realized?There are several significant differences between the Holmes and SLMR cases, a major one being that the former involves direct killing of another person, while the latter involve only permitting a person to die when it is not possible to save all. Furthermore, in extreme situations such as Holmes, the restraints of civilization have been stripped away, and something approximating a state of nature prevails, in which life is “solitary, poor, nasty, brutish and short.” The state of nature does not mean that moral standards are irrelevant and that might should prevail, but it does suggest that much of the matrix which normally supports morality has been removed. Also the necessary but unfortunate decisions about who shall live and die are made by men who are existentially and personally involved in the outcome. Their survival too is at stake. Even though the institutional role of sailors seems to require greater sacrificial actions, there is obviously no assurance that they will adequately assess the number of sailors required to man the vessel or that they will impartially and objectively weigh the common good at stake. As the judge insisted in his defense of casting lots in the Holmes case: “In no other than this [casting lots] or some like way are those having equal rights put upon an equal footing, and in no other way is it possible to guard against partiality and oppression, violence, and conflict.” This difference should not be exaggerated since self-interest, professional pride, and the like obviously affect the outcome of many medical decisions. Nor do the remaining differences cancel Holmes' instructiveness.Which set of arrangements should be adopted for SLMR? Two questions are involved: Which standards and criteria should be used? And, Who should make the decision? The first question is basic, since the debate about implementation, e.g. whether by a lay committee or physician, makes little progress until the criteria are determined.We need two sets of criteria which will be applied at two different stages in the selection of recipients of SLMR. First, medical criteria should be used to exclude those who are not “medically acceptable.” Second, from this group of “medically acceptable” applicants, the final selection can be made. Occasionally in current American medical practice, the first stage is omitted, but such an omission is unwarranted. Ethical and social responsibility would seem to require distributing these SLMR only to those who have some reasonable prospect of responding to the treatment. Furthermore, in transplants such medical tests as tissue and blood typing are necessary, although they are hardly fully developed.“Medical is not as as many since there is debate in medical about the relevant and Although can contribute little or nothing to this two may be in First, should be used only to determine the group from which the final selection will be and the attempt to of to should be Medical would exclude some but would not as a of between those who the first For example, if two for were the physicians would not choose the one with the better medical selection would be made on other Second, and should be to an absolute and should be only when they are without related to medical the to with the of which might to most significant moral questions when we to the final the of has been and the number is than the other criteria should be used? should the final selection be First, I shall examine some of the that from to make the final selection in of social these about the and of the I shall the possible for selection or criteria of social on but most they are The and to the society is although this obviously be from his of and the of his to society an is in of these social and has been to suggest the of that affect social value or we encounter the first major of this do we determine the relevant criteria of social of various social are only too does one and the of the life, that day we may how to or or the value in in the same and way that has I am not that we can or that we should attempt to do if the various social and human in could be how do we determine how much we will to Which will have in case of more in the light of which values and principles do we social possible way of determining the values which should be in selection has been by He that our medical decisions about allocating resources are on an of values by there is no way of we should be and about it. should we He that we the values that most in our society and use them as criteria for distributing SLMR. values can be by or if in this put a greater on than men would have a greater on our SLMR than of is significant and the who was SLMR in might be in as the greatest American since George is criteria that could be applied but at the and as well as individual the criteria of social value that are used in is this more than in the and decisions of the selection committee of the where such as and have been significant for determining who shall As two conclude after these criteria and they who the the way but who have so much to the making of The is no for a with bad to this first of determining social values is a only is it if not to on social but it is easy to our will be in a few and the of actions will it is to which persons will their in in and the of of For these as has might be a but we simply the to the which we must is more than when we think in make us that such an approach to SLMR is the of but this should not be The on another the approach would in the person to his social and it and the of the his as a person which be to his or to It is not at all that we are to live with these of who the artificial has we to the principle that social should determine we patients to be with only when they are go to have have a a good and to the that any for for selection is a to the of view which The is not to all but to that SLMR cases are which involve The however, can have and for from by and can go and seek for criteria for the question of life or death in the of the artificial these criteria to the of human the to which they can be little more than that at by casting The he will be to those in American medical is most to a certain or in of which when is this of the and where it only as a and It only us how all selection criteria and procedures the to us in the of the human condition and its This approach is with his view of the task of us how to and ethics, I would can help us the and in light judgments can be made. Even if all actions in SLMR should involve some may human to a greater than others. that a on any criteria is more than that at by casting selection by would the to the moral and values that we are to maintain a of is that we use some of or such as first or such as a to determine who shall be as a to when and judgments can and must be made. Edmond Cahn who the casting of lots as Cahn it, crisis involves too for and too for other as a to which human these values are with the of it is to have persons rather than determining who shall they are with the outcome of the the such as and of being which make human life it is are to be and in the the it must be that the use of seems and the of criteria in SLMR to make their as and as possible so that does not determine who shall however, the moral and values which might be supported by selection by or A more is that the procedure that I develop the relevant moral too That so the argument might the society and its and not the individual with his illness and upon SLMR. is that the values and principles at work in the may well over those in the both of their and and of the of selection in of social As “The more is the to be made of an and the more the life and the more the for human as a moral principle I is in certain conflict situations, it a significant of by of it be as a and procedure without an the including human which might it. this about the Holmes case: of our upon as the all the and the in our should think rather of of as the of the of those individuals to one another that might have been and by casting The and which on the approach would be in his social role and can be and to by a recognition of his equal to be a is by procedures which of selection by more the by human than does It is not but it is to the of letting all die or only those who have the greatest social and argument can be by values other than individual and of value in the medical is the of between and Which selection criteria are most in with this of Which will and it? is that selection by or is from this which is to for human is an of about It is not simply the that another will a particular but more that another will him in certain will him as a As Although has to do with on a of another person, it is on a of a the to to with or live to and so to another is first of all to him to the principle of morality in his with to as a person, This be in situations when a person decisions about him to be made in of his social for such decisions his as a on of in social value or would have reason for that his had been the that one is being not as an in himself but as a means in medical progress or the of a greater social good is with and of this in the which was after the after the first heart The of between the and is not only an value in the of being an in the treatment. It is to be of its as a the related values of individual and are maintained in selection by other the argument for this Which criteria and procedures would men have to a in which several men are to determine for themselves and their the criteria and procedures by which they would to be to and from SLMR if the need need to two and ask which set of criteria and procedures would be as the most and, indeed, the The are The men are are interested in their own that of members of their and of they are not by Furthermore, they are of their own and to the social do not how they would in a the for SLMR in of social these which would be all or the use of Which would seem the most The By which set of criteria would they to be in or from the of those who will be The choice in this and of would be selection or since this of A possible is that one would to a and choose the I think especially since I that the in this are for their as well as for selection or could be more to the It would make more for men who are self-interested but about their to society to a set of criteria which would in of would selection by as relatively just and for or The and those who are would be greater if the is on social than if it is on and be in these situations, but they would be by the of being relatively by makes this A to would make for the and those who have a specific in It would be for them to his by relatively of criteria in is involved. the of life have us to the of and to the of or human life is an after has an absolute to most of us would that we have as much to it as in Although it is as selection by is in in I am not of any which some of its patients from kidney in to make for later who are better in of social Furthermore, few would it. few would a person from a kidney on the that a person better had just In a of the of by at the of from to patients but were not the had its of in and is at least certain is that we extend this principle first to determine who the patients shall live or that we artificial such as a or first would be more than a since the make their over a of time rather than as a group at one This procedure would be in with at least one principle in our and with our of individual and in to these values can be by how the can be to the one easy way of this task is to maintain the of which to a patients are not that they are being for SLMR in to the treatment. whether is or not is not the significant it is rather for would be most to the is that can be more if of and are and that they are by selection by or has another since it would the need for a committee to examine in of their social This responsibility can be there is a possible of use of selection which is interesting to although I do not it as a good reason for It can be as of the of has that SLMR cases would if these scarce resources were rather than on social would no be a the of and would make certain that they would not be by a selection they would help to or so that medical would be and the that I have are the of to be without If we would we not just after we had in it The direction of argument has been against any and I would this as the way to me one possible way of while at the same time them so that they would be of the approach is that which make it necessary to that one man is indispensable for a society in view of a particular set of it the when the is a for the argument to this has that the of would on those who think that the social in this is so that they simply by the outcome of a or a first first the reason must be rather than that is, we from in this not we to of this to the of our but his would be the in a social value the should be used as a of exception in for example, only if it would a reason to another person from a kidney if all were this to the has been made to we would be to put this of another for a only if we would be in which all are being to a by from it. would make an exception I do not this procedure of I think that one can it while about selection by or If it is a lay committee would be upon to with the since the or others would in be the outcome of or This lay committee would determine whether this was so indispensable at this time and that he had to be saved by the values by It would make it that exception is if at only as the of two a defense would be only if and so many moral and values in SLMR

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Organ Donation and Transplantation
Ethics in medical practice
Ethics and Legal Issues in Pediatric Healthcare
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Jun 22, 2009·Medical Education
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Why the ethics of medical education research differs from that of medical research

Olle ten Cate

This journal has recently adjusted its requirements for research papers, referring to the World Medical Association’s Helsinki Declaration on Ethical Principles for Medical Research Involving Human Subjects.1,2 Many advances in medicine have been attained by research involving patients. Individual patients’ best interests have sometimes been sacrificed for the benefit of future patients’ health. Most countries have established legal regulations and procedures, based upon this declaration, along with institutional review boards (IRBs). Such universal requirements do not exist for education research or social science research in general. For this reason, many countries, but not all, have included medical education research in their ethical review procedures, which are designed for medical research. Human subjects here are usually students or residents, but teachers and patients can also be involved. This journal will now require proof of ethical research conduct before publication. This step can be considered to represent an advance in research standards and may be taken up by other journals in the field. Like patients, learners are potentially vulnerable subjects of research, specifically if the investigators simultaneously exercise power as teachers or examiners. The Netherlands is among those countries that do not require ethical approval for medical education research. Dutch IRBs typically respond to submitted requests for review of education projects with statements like ‘exempt from ethical review’ because, firstly, patients are not involved and, secondly, no medical interventions are applied. So far, journals have accepted and published such statements without further question. Researchers often find this a comfortable stance as it avoids the bureaucratic burden of approval that has seriously hampered research elsewhere.3–5 For instance, I saw the recent 3-month stay in the UK of one of my research staff end without the planned interview and questionnaire project carried out, only because of a late and negative response from the IRB. Not that the project was unethical; the application simply lacked the requisite paperwork, despite the fact that extensive written and oral information was supplied. The question here is not whether ethical review in medical education research is justified – of course it is – but whether existing IRB procedures are most suitable for medical education research.6 Dutch researchers find ‘exempt from ethical approval’ a comfortable stance as it avoids bureaucratic burden Given the requirements journals will put upon submissions, in terms of providing other proof of ethical conduct of medical education research if institutional review is not possible,1,7 independent ethical review will also become important in those countries without relevant procedures, such as the Netherlands. In a recent survey about experiences with IRBs among clinical course directors in the USA, it was suggested that national guidelines for ethics review would enhance transparency and stimulate inter-institutional research collaboration.8 When suggesting that the Netherlands Association for Medical Education take the lead in devising such guidelines, I began to wonder what ethical review of education research should look like, vis à vis the Helsinki Declaration. I concluded that education differs from health care in a number of aspects that might affect how ethics review should take place. Patients usually need care because of ill health. They are often very dependent on doctors and hospitals for their essential wellbeing. Students are also dependent as they must abide by the regulations of an institution and its teachers to pass necessary examinations, but they themselves are responsible for whether or not they enrol in particular courses and for whether they attain their self-chosen goals in life. They are, by far, not as dependent as patients. Next, students determine to a large extent the outcome of educational interventions, much more so than patients can determine the outcome of medical interventions. Personal study effort is a major determinant of academic success; medical treatment successes are determined to a far greater extent by health care providers. Students determine the outcome of educational interventions far more than patients can determine the outcome of medical interventions Medical research may involve risks of harm to a patient’s health, which, in some cases, may be serious and irreversible. This type of research requires the utmost caution. Harm in education research may be defined as the risk that less than optimal education is provided, resulting in less acquiral of knowledge and skills, and harm to academic progress. Harm to progress can be serious. I have witnessed a financial claim by a medical student who argued that an examiner had caused loss of income as a result of failing this student on tests and thus extending the required course length. The claim was not sustained and in this case no research was involved, but an educational experiment could be envisioned to carry a risk for such potential harm. In other cases, harm may imply psychological stress and discomfort. Still, this type of harm does not compare with potential physical harm resulting from medical experiments. Potential harm resulting from educational experiments does not compare with potential harm from medical experiments Furthermore, there is no clear distinction between administration and research purposes in data collection on student progress and programme quality. Schools collect data on student progress and the quality of educational processes as part of their core business. This type of data collecting is usually not subject to ethical approval, as registering test results and, to a lesser extent, registering students’ opinions of education are unavoidable. Enrolment in education must represent the subject’s tacit approval that his or her personal data are registered. These data serve both students and educational quality. Reports based on aggregated data of student progress and educational quality can be considered to serve a necessary research aim; indeed, not using these data to improve education could be considered unethical. The necessity of gaining ethical approval or informed consent to use these data as part of research results for publication in a journal is questionable if harm to students is clearly not at stake. Researchers now sometimes label investigations as ‘evaluation’ in order to avoid the burden and delay incurred by a review procedure, but this does not seem a proper way to go. Rather, clear specifications of the types of data collection and uses that require ethical approval should guide researchers in their ethical conduct. Education is a process that cannot easily be stopped. Programmes must be offered to enrolled students and schools should continue to aim to deliver high-quality curricula. Many medical schools evaluate and try to improve their curricula, either gradually or by instigating large innovations all at once. Viewed from a research perspective, an educational method can be considered an intervention, just as a medical treatment is an intervention. At variance with medicine, medical education is only at a very early stage in the development of evidence-based practice. Education research – still – offers only little evidence to support a claim that one method is superior to another, despite the growing medical education literature.9,10 One reason for this is that students themselves determine to a large extent the effect of education.11 The counterside of the coin is that institutions can change their educational methods if they feel the need to do this, with limited risk for damage to the curriculum or harm to students. Let’s now compare curriculum development with education research. Consider a complete overhaul of the medical curriculum for a new student cohort, say, from a traditional to a problem-based learning (PBL) format. Does this ‘experiment’ require ethical approval? Not likely. Not even when national examination results are compared with those of the previous cohort and published in support of the new development. This holds true if the results of students from two medical schools with such different curricula are compared. Next, consider a complete overhaul of the second year of a curriculum for only part of a student cohort. Students could be randomly assigned to either a PBL or a traditional programme, and their scores on national examinations could be compared. Would this ‘experiment’ require ethical approval? Most likely it would in most countries. But what is the difference in terms of potential harm to students? Probably none. In general, schools and curricula differ in their educational methods and it is often hard to claim that students are better off with one school or method than another. Twenty years of external review of the eight medical schools in the Netherlands have not raised any serious conclusions that one school is clearly superior to another. Of course, checklists were used and the scores calculated showed differences on points, but no sound basis has ever emerged in support of real qualitative differences in outcome. This example shows how close educational development is to education research. The difference may only be that one instance is considered research, as it has a systematic project description, labels a new method as an intervention, formulates outcome measures and analyses data. What actually happens with students – the basis for ethical review – may be the same in the other instance. This PBL example may not sound very experimental because the format of PBL has been researched extensively, but such research has usually happened only after PBL has been introduced into a curriculum, not before. In other words, is it logical to require ethical approval when methods are compared within cohorts, but not to do so with scientifically less sound approaches, such as historical or inter-institutional comparisons? Providing a completely new educational method to a new cohort without any comparison does not require ethical approval, but it is day-to-day practice in many schools. Why require ethical approval when methods are compared within cohorts, but not historically or inter-institutionally? One important element of ethical research conduct concerns the obligation to provide subjects with the option not to be involved in the investigation, so that potential candidates are asked to give their informed consent to participation and provided with options for withdrawal. In education research in a field setting, participation in research often equals participation in education. For example, introducing a new knowledge test – in fact, most knowledge tests in educational settings can be considered as ‘new’ instruments if test items have not been used before – cannot include an option for non-participation when a pass/fail decision must be based on such a test. Informed consent can be sought, but often there is no alternative available. In conclusion, education research should be carried out ethically and the journals that publish such studies have a responsibility to stimulate ethical research conduct. This includes the proper protection of the interests of any human subjects. However, the criteria with which we may evaluate the ethical conduct of education research are not necessarily equivalent to those required in medical research involving patients. Ethical research requires the maintenance of a reasonable balance, between yin and yang, so to speak, or between the risks of harm to subjects and the expected scientific yield of the investigation. This balance may well differ between medical and education research.12 I believe it would help to formulate specific criteria with which we can evaluate the ethics of medical education research. Pugsley and Dornan cite a helpful list of 10 ethical questions for research involving students, formulated by Cardiff University.7 This might represent a starting point for the development of such criteria and could result in a review procedure that both upholds ethical research standards and stimulates, rather than discourages, teachers and students to engage in medical education research.

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Innovations in Medical Education
Ethics in medical practice
Clinical Reasoning and Diagnostic Skills
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