Blockchain Papers

Ashar Prima, Dewi Gayatri, Yati Afiyanti, Christantie Effendy

Background: Indonesia faces a growing double burden of non-communicable diseases, particularly cancer. The latest data from the Global Cancer Observatory (Globocan) indicates over 408,661 new cases and 242,099 cancer-related deaths in 2022, with a projected 63% increase in the case burden between 2025 and 2040 without strategic intervention. Although a new legal framework through Health Law No. 17 of 2023 and the Minister of Health Decree (KMK) No. HK.01.07/MENKES/2180/2023 has mandated palliative care as an integral component of health services, its implementation still faces significant systemic barriers. Policy and Implications: This policy brief analyzes the disconnection between the policy mandate and on-the-ground reality, identifying critical gaps in accessibility, healthcare workforce capacity particularly among nursesand financing mechanisms through the National Health Insurance (JKN) program. The failure to effectively integrate palliative care not only causes unnecessary suffering for millions of patients but also burdens the health system with inefficient costs and suboptimal end-of-life care, reflected in the high "financial toxicity" experienced by patients. Recommendations: We recommend a four-pillar strategy: (1) Formalize and standardize palliative services within the JKN benefits package with a clear financing model to address regulatory ambiguity; (2) Develop a national competency-based palliative education and training strategy for all health workers, with a focus on empowering nurses in primary care; (3) Implement a decentralized and tiered palliative care delivery model centered on Community Health Centers (Puskesmas) to ensure equitable access; and (4) Launch a national public education campaign to destigmatize palliative care and increase awareness. Conclusion: The integration of palliative care is not merely an option but a strategic and ethical imperative for achieving Universal Health Coverage (UHC) in Indonesia. It is a cost-effective investment to improve patients' quality of life, support families, and ensure the sustainability of the national health system in facing future non-communicable disease challenges.

Paul A. Komesaroff, Jennifer Philip

The introduction of Voluntary Assisted Dying (VAD) legislation across Australia has presented challenges to clinicians, who have had to learn about new processes and, in some cases, to consider ethical and legal issues they have not previously encountered. For the most part, the adjustments have been managed smoothly, even if not all misgivings or uncertainties have been resolved. Where innovative changes are being introduced, it is important to identify and monitor concerns that arise in the community, including those of practitioners. This can be achieved by the conduct of surveys, the results of which may be used to guide further action on institutional, community and individual levels. This is especially important while the change process is getting underway, as is the case in New South Wales (NSW), where VAD legislation has only recently come into effect. The study by Light et al.1 of attitudes to VAD amongst clinicians in NSW provides such useful information. It shows – reassuringly for supporters – that most agree with the legislation. However, the value of this study is not that a majority in favour of VAD resolves the surrounding issues for all time. Rather, its main utility derives from the questions it raises but leaves unanswered and which will undoubtedly stimulate community discussion. These questions, moreover, have relevance not just for NSW but also across other jurisdictions, including Victoria, where a review of the VAD legislation is currently in progress. Light et al.'s study shows that the support for VAD amongst clinicians is not only widespread but also extends across all disciplines, even if levels of actual support vary somewhat between different areas of work, and it provides an indication of how perceptions have changed over time. Although in this case direct comparisons may be imprecise, it seems clear that acceptance of VAD amongst Australian health professionals has increased significantly over the past decade during the period in which legislation has been progressively introduced in various jurisdictions. On the other hand, it also shows that, despite such positive expressions, only a small proportion of practitioners is prepared to become directly involved, signalling potential problems for attempts to establish the expertise required to ensure the effective operation of the new system. In Victoria, this small number of participating practitioners has been shown to have an impact on the burden of care shouldered by the practitioners, as well as on the ability for patients to access their services.2 Despite the revealing nature of the figures, as with quantitative research in general, the numerical data cannot capture all consequential nuances of opinion, for which a more detailed, fine-grained analysis of qualitative investigation would be needed to fill in the details. It cannot show, for example, how or why individual clinicians make their choices, the nature of their interactions with patients and families or the impact of their experiences on their own future practice. Nor can a survey resolve ethical disagreements. This fact has not prevented polls from being used to exert political pressure on policymakers in the past: indeed, some studies have been instrumental towards this very outcome, provoking critical reflections on how the wording of a question can increase the chances of obtaining a desired outcome.3, 4 Nonetheless, the existence of a body of opinion about certain ethical issues can help clarify what is at stake and stimulate debate in affected communities. As obvious as it may sound, numerical studies cannot resolve questions of truth or ethical validity. Even widespread agreement at the level of public opinion cannot be taken as proof that a question has been, or can be, settled. High levels of unanimity cannot substitute for or circumvent ongoing, ethical discourse, in which all questions, including those claimed by some protagonists to be closed, are potentially subject to rigorous scrutiny. One of the main sources of ethical complexity about VAD arises from the multiplicity of cultural and religious perspectives within the community. Such differences can sometimes be recognised by subgroup analysis of sufficiently large quantitative data sets. However, even here, results may be misleading because responses can vary widely within population groups, which often lack homogeneity and consensus. Notwithstanding this, it is important for policymakers and health professionals to remain alert to issues of cultural sensitivity, in relation to which both principles and practices may need to be adjusted. Numerous studies have drawn attention to the array of possible concerns, which may vary according to cultural backgrounds, professional roles, religious beliefs and family contexts.5, 6 These considerations lead to an important conclusion about VAD and the ways in which it is understood, applied and evaluated. VAD is not just one thing; it is not just a piece of legislation or a single moral act. Rather, it is a focal point for a vast array of issues and concerns, ranging from the meanings attached to life and death, grief and bereavement, pain and suffering, the importance of trust, loyalty and care, and fears of abandonment and dependency. It raises questions about the relationship between law and ethics and the processes available in a society for resolving, or accommodating, ethical differences. For this reason, it cannot be summarised or evaluated in relation to just one set of variables. It is truly multidimensional, a kind of palimpsest of accumulated voices and views from multiple perspectives. For the same reason, it is worth noting that the ferment does not cease after a law has been passed. On the contrary, legislation itself should be regarded as an invitation for ongoing discussion and ethical reflection, which legislators should welcome as important for the refinement of the system. This is not always recognised, as appears to be the case at present in Victoria, where the terms of reference for the mandated review appear to have been set in a manner seeking to limit rather than stimulate public debate. So, what is the important message? That we need to continue to monitor attitudes to and beliefs about VAD, not just in the health professional community but more broadly, and to ensure that the multidimensional conversations continue. Even where VAD programmes appear to be functioning effectively, there is an unending need for ongoing review, using quantitative surveys and other research methodologies, and critical discussion. The establishment of a legal framework for VAD is not the end point: if it is successful it will open up fecund new territory within which ethical experience can continue to be deepened and enriched.

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

Mohammad Salimi Amroud, Pouran Raeissi, Seyed‐Masoud Hashemi, Nahid Reisi · 5 authors

BACKGROUND: Terminally, illnesses such as cancer, AIDS, dementia, and advanced heart disease will require special supportive and palliative care, although a few numbers of these patients are provided with these services. The aim of the present study was to perform a comparative study of supportive-palliative care provision in selected countries. MATERIALS AND METHODS: This research was a descriptive comparative study that its research population was the frameworks of palliative and supportive care provision in Egypt, Turkey, America, Australia, Canada, the Netherlands, and China. These frameworks were compared across six dimensions of service receivers, financing, providers, service provider centers, type of services provided, and training. Data collection tool has included the checklist and information sources, documents, evidence, articles, books, and journals collected through the Internet and organizations related to the health information of selected countries and by the library search. Data were investigated and analyzed using the data collection tool and checklists. FINDINGS: The findings showed that the developed countries having decentralized trusteeship structure had a more favorable status in palliative and supportive care provision. The type of services provided was a combination of mental, psychological, social, spiritual, financial, and physical and communication services. Provider centers included hospital, the elderly, and cancer and charity centers. CONCLUSION: Regarding the investigation and recognition of the status of supportive-palliative care provision, it was observed that the provision of these services was a concern of the selected countries, but they did not have a defined model or pattern to provide these services. Therefore, it is suggested that each country takes a step to redesign and define frameworks and structures in the evolution of supportive-palliative cares in accordance with the particular conditions, indigenous culture, religion, and other effective cases of that country and pays special attention to the role and position of supportive-palliative cares.

Ștefana Maria Moisă, Andrada Pârvu, Beatrice Gabriela Ioan

Background: Palliative care, seen as a fundamental human right, gains increasingly more importance worldwide, but the distribution of this kind of facilities is unequal. Aim: In this paper authors compare the palliative care systems of Romania and Lithuania, post-communist countries, characterized by shifting from a state healthcare system to a decentralized one, based on health insurances. Design: We have performed a desk research in Romanian and English languages, analyzing publications referring to this topic in the two countries. Data sources: Vilnius University Database and Google search engine using as keywords, Lithuania(n) palliative care", respectively "Romania(n) palliative care", published between 1975 and 2019. Eligibility criteria: articles published between the years mentioned above in English or Romanian languages. Results: In Romania, the palliative care network is better structured, including both hospital care and home care, for adults and children. Still, opioid consumption in Lithuania is higher than in Romania because of a more flexible prescribing legislation. In Romania, palliative care is a recognized as a medical sub-speciality, while in Lithuania no preoccupations exist in this regard. Conclusions: In both countries state budget funds allocation lacks transparency, and funds allocated for palliative care are insufficient. During the last 20 years Romania has undertaken bigger steps in palliative care than Lithuania, especially due to the effort of a few dedicated professionals. Still, the sub-financing of the two systems and the limited number of professionals limit the system efficiency.

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

Carlos Centeno, S. Hernansanz, Luis Alberto Flores, Álvaro Sanz Rubiales · 5 authors

Abstract This chapter offers an in-depth look at health politics and the tax-financed, universal health system in Spain. It traces the development of the Spanish healthcare system, focusing in particular on its double transition in the 1980s and 1990s from a centralized social insurance system, mostly funded through workers’ and employers’ contributions, to a decentralized universal model financed by general taxation. The new national health system aimed at covering all residents and transferred healthcare competences to the regions, i.e. the seventeen Autonomous Communities, a process completed in 2001. Key issues include rationalization, harmonization, and territorial equity-building of the decentralized healthcare system; efficiency improvement through the introduction of private management elements; and cost containment to bolster the system’s financial sustainability in the context of growing demand and scarce resources. As the chapter argues, these challenges along with the remarkable changes in the political party system have increased the political salience of healthcare in public debate in the 2010s, but the prospects for developing consensual healthcare policies have worsened, such that structural problems are likely to persist.