BackgroundWhen rationing health care, a commonly held view among ethicists is that there is no ethical difference between withdrawing or withholding medical treatments. In reality, this view does not generally seem to be supported by practicians nor in legislation practices, by for example adding a ‘grandfather clause’ when rejecting a new treatment for lacking cost-effectiveness. Due to this discrepancy, our objective was to explore physicians’ and patient organization representatives’ experiences- and perceptions of withdrawing and withholding treatments in rationing situations of (...) relative scarcity.MethodsFourteen semi-structured interviews were conducted in Sweden with physicians and patient organization representatives, thematic analysis was used.ResultsParticipants commonly express internally inconsistent views regarding if withdrawing or withholding medical treatments should be deemed as ethically equivalent. Participants express that in terms of patients’ need for treatment withholding and withdrawing should be deemed ethically equivalent. However, in terms of prognostic differences, and the patient-physician relation and communication, there is a clear discrepancy which carry a moral significance and ultimately makes withdrawing psychologically difficult for both physicians and patients, and politically difficult for policy makers.ConclusionsWe conclude that the distinction between withdrawing and withholding treatment as unified concepts is a simplification of a more complex situation, where different factors related differently to these two concepts. Following this, possible policy solutions are discussed for how to resolve this experienced moral difference by practitioners and ease withdrawing treatments due to health care rationing. Such solutions could be to have agreements between the physician and patient about potential future treatment withdrawals, to evaluate the treatment’s effect, and to provide guidelines on a national level. (shrink)

Advances in neonatology have led to improved survival for periviable infants. Immaturity still carries a high risk of short- and long-term harms, and uncertainty turns provision of life support int...

The decision-making environment in intensive care units (ICUs) is influenced by the transformation of intensive care medicine, the staffing situation and the increasing importance of patient autonomy. Normative implications of time in intensive care, which affect all three areas, have so far barely been considered. The study explores patterns of decision making concerning the continuation, withdrawal and withholding of therapies in intensive care. A triangulation of qualitative data collection methods was chosen. Data were collected through non-participant observation on a surgical (...) ICU at an academic medical centre followed by semi-structured interviews with nurses and physicians. The transcribed interviews and observation notes were coded and analysed using qualitative content analysis according to Mayring. Three themes related to time emerged regarding the escalation or de-escalation of therapies: influence of time on prognosis, time as a scarce resource and timing in regards to decision making. The study also reveals the ambivalence of time as a norm for decision making. The challenge of dealing with time-related efforts in ICU care results from the tension between the need to wait to optimise patient care, which must be balanced against the significant time pressure which is characteristic of the ICU setting. (shrink)

There is growing interest among pharmaceutical policymakers in how to “disinvest” from subsidized medicines. This is due to both the rapidly rising costs of healthcare and the increasing use of accelerated and conditional reimbursement pathways which mean that medicines are being subsidized on the basis of less robust evidence of safety and efficacy. It is crucial that disinvestment decisions are morally sound and socially legitimate, but there is currently no framework to facilitate this. We therefore reviewed the bioethics literature in (...) order to identify ethical principles and concepts that might be relevant to pharmaceutical disinvestment decisions. This revealed a number of key ethical considerations—both procedural and substantive—that need to be considered when making pharmaceutical disinvestment decisions. These principles do not, however, provide practical guidance so we present a framework outlining how they might be applied to different types of disinvestment decisions. We also argue that, in this context, even the most rigorous ethical reasoning is likely to be overridden by moral intuitions and psychological biases and that disinvestment decisions will need to strike the right balance between respecting justifiable moral intuitions and overriding unjustifiable psychological impulses. (shrink)

If a doctor is trying to decide whether or not to provide a medical treatment, does it matter ethically whether that treatment has already been started? Health professionals sometimes find it harder to stop a treatment (withdraw) than to refrain from starting the treatment (withhold). But does that feeling correspond to an ethical difference? In this article, we defend equivalence—the view that withholding and withdrawal of treatment are ethically equivalent when all other factors are equal. We argue that preference for (...) withholding over withdrawal could represent a form of cognitive bias—withdrawal aversion. Nevertheless, we consider whether there could be circumstances in which there is a moral difference. We identify four examples of conditional nonequivalence. Finally, we reflect on the moral significance of diverging intuitions and the implications for policy. We propose a set of practical strategies for helping to reduce bias in end-of-life decision making, including the equivalence test. (shrink)

Background According to some medical ethicists and professional guidelines, there is no ethical difference between withholding and withdrawing life-sustaining treatment. However, medical professionals do not always agree with this notion. Patients and their families may also not regard these decisions as equivalent. Perspectives on life-sustaining treatment potentially differ between cultures and countries. This study compares Japanese physicians’ and citizens’ attitudes toward hypothetical cases of withholding and withdrawing life-sustaining treatment.Methods Ten vignette cases were developed. A web-based questionnaire was administered to 457 (...) citizens and 284 physicians to determine whether they supported withholding or withdrawing treatment.Results In a case where a patient had an advance directive refusing ventilation, 77% of the physicians and 68% of the citizens chose to withhold treatment. In a case where there was an advance directive but the patient’s family requested treatment, 55% of the physicians and 45% of the citizens chose to withhold the ventilator. When a family requested withdrawal of the ventilator but patient wishes were unknown, 19% of the physicians and 48% of the citizens chose to withdraw the ventilator. However, when the patient had also indicated their wishes in writing, 49% of the physicians and 66% of the citizens chose to withdraw treatment. More physicians were prepared to withdraw dialysis (84%) and artificial nutrition (81%) at a patient’s request than mechanical ventilation (49%).Conclusions A significant proportion of Japanese physicians and citizens were reluctant to withhold or withdraw life-sustaining treatment, even in cases where the patient had indicated their wishes in writing. They were more likely to withhold than withdraw treatment, and more likely to withdraw artificial nutrition than mechanical ventilation. Japanese physicians gave significant weight to family views about treatment but were less likely to agree to withdraw treatment than citizens, indicating a potential source of conflict in clinical settings. (shrink)

Many countries have adopted new triage recommendations for use in the event that intensive care beds become scarce during the COVID‐19 pandemic. In addition to establishing the exact criteria regarding whether treatment for a newly arriving patient shows a sufficient likelihood of success, it is also necessary to ask whether patients already undergoing treatment whose prospects are low should be moved into palliative care if new patients with better prospects arrive. This question has led to divergent ethical guidelines. This paper (...) explores the distinction between withholding and withdrawing medical treatment during times of scarcity. As a first central point, the paper argues that a revival of the ethical distinction between doing and allowing would have a revisionary impact on cases of voluntary treatment withdrawal. A second systematic focus lies in the concern that withdrawal due to scarcity might be considered a physical transgression and therefore more problematic than not treating someone in the first place. In light of the persistent disagreement, especially concerning the second issue, the paper concludes with two pragmatic proposals for how to handle the ethical uncertainty: (1) triage protocols should explicitly require that intensive care attempts are designed as time‐limited trials based on specified treatment goals, and this intent should be documented very clearly at the beginning of each treatment; and (2) lower survival prospects can be accepted for treatments that have already begun, compared with the respective triage rules for the initial access of patients to intensive care. (shrink)

Decisions about providing life-sustaining treatments for extremely premature infants born after preterm labor are complex, contested, and fraught. They are medically uncertain—the outcome of embark...

Volume 19, Issue 6, June 2019, Page W5-W9.

In their target article, Blumenthal-Barby et al. (2022) address the view that bioethics as a philosophical discipline is obsolete. Indeed, their discussion was prompted by a recent bioethics confer...

BackgroundClinical Ethics Support Services have been established to support healthcare professionals in addressing ethically sensitive issues in clinical practice and, in many countries, they are under development. In the context of growing CESS, exploring how healthcare professionals experience and address clinical ethics issues in their daily practice represents a fundamental step to understand their potential needs. This is even more relevant in the context of extremely sensitive diseases, such as cancer. On this basis, we carried out a qualitative study conducting (...) in-depth semi-structured interviews with stakeholders of a major comprehensive cancer centre in Italy, with the twofold aim of investigating what ethical issues arise in the context of clinical oncology and how they are addressed, as well as stakeholders’ expectations about a potential CESS to be implemented within the Institution.MethodsThe study was conducted within the theoretical framework of Grounded Theory. Participants were healthcare professionals and other key stakeholders working within the cancer centre. The semi-structured interview aimed at exploring common ethical aspects of oncology, investigating stakeholders’ professional experience in dealing with clinical ethics issues, their expectations and requests regarding ethics support services. Transcripts of the interviews were coded and analysed according to the principles of Grounded Theory.ResultsTwenty-one stakeholders were interviewed. Our analysis showed a wide consensus on the identification of ethically relevant issues, above all those concerning communication, end-of-life, and resource allocation. The absence of institutional tools or strategies to address and manage ethical issues at the patient bedside emerged, and this is reflected in the widespread request for their development in the future. The ideal support service should be fast and flexible in order to adapt to different needs and clinical cases.ConclusionsThe interviewees showed a limited degree of ‘ethical awareness’: despite having reported many issues in clinical practice, they could hardly identify and describe the ethical aspects, while complaining about a lack of ethical resources in their management. To build a truly effective support service, it therefore seems appropriate to take such context into consideration and address the emerged needs. Ethical sensitivity seems to be key and it becomes even more relevant in critical clinical areas, such as the therapeutic pathways of terminally ill patients. (shrink)

It is astoundingly difficult—and may not be desirable—to be rational about decisions to let our babies die. Parents in these situations are caught in a maelstrom of overpowering and often contradic...

Infant A was born at term with an antenatal diagnosis of gastroschisis. His parents were well informed about the condition and understood that he would require surgery. However, at delivery, his bowel was found to be severely compromised. Infant A returned from theatre with only four centimeters of small bowel. This is physiologically devastating and easily qualifies as ultrashort bowel syndrome. Whilst the prognosis from ultrashort bowel syndrome is greatly improving, the condition continues to carry a significant risk of mortality (...) and morbidity, in part attributable to treatment itself. The cornerstone of management of USBS is provision of intravenous parenteral nutrition. This is not a physiologically normal route of nutrition; it is a medical treatment. Infant A’s parents questioned whether continuation of active treatment was appropriate. If a treatment is not in the patient’s best interests, then it can be argued it is not justified to administer it. Decisions about quality of life are intensely personal. Where there is a significant burden of treatment, even when there is a potential for increased survival, whether the course of treatment is in the child’s best interests must be taken with huge emphasis on the parental perspective and their family values. For well-informed, realistic parents who are welcoming of the full picture of information and implications of their decision, I argue that parents are best placed to make the decision for their child. Long-term PN for USBS may well be a medically encouraged treatment. However, it should not be medically mandated. (shrink)

The number of diagnoses and the number of persons having diagnoses have increased substantially, and studies indicate that diagnoses are given or upheld even if they are unwarranted, that is, that they do not satisfy professionally accepted diagnostic criteria. In this article, the authors investigate the ethics of withholding and withdrawing unwarranted diagnoses. First, they investigate ethical aspects that make it difficult to withhold and to withdraw such diagnoses. Second, they scrutinize whether there are psychological factors, both in persons/patients and (...) healthcare professionals, making it difficult to withdraw and withhold unwarranted diagnoses. Lastly, they use recent elements of the withholding-versus-withdrawing treatment debate in medical ethics to investigate whether there are any differences between withholding and withdrawing treatment and withdrawing and withholding unwarranted diagnoses. The authors conclude that it is crucial to acknowledge and address all these issues to reduce and avoid unwarranted diagnoses. (shrink)

Background Doctors often deal with end-of-life issues other than assisted death, such as incompetent patients and treatment withdrawal, including food and fluids. Methods A link to a questionnaire was sent by email three times, at one-week intervals, to the doctors registered in the Northern Section of the Portuguese Medical Association. Results The questionnaire was returned by 1148 (9%) physicians. This study shows that only a minority of Portuguese doctors were willing to administer drugs in lethal doses to cognitively incompetent patients (...) at the request of a family member or other close person, and even less would do it on their initiative. Most doctors favored the withdrawal of life support measures in advanced and progressive diseases at the patient’s request. Still, much fewer doctors agreed with the suspension of supportive life measures at the request of a family member, another close person, or by their own unilateral decision. However, fewer agreed with that action concerning the rest of the food and fluids. Portuguese doctors favor the administration of drugs for suffering control, even foreseeing they could shorten life. Conclusion Most doctors in this study respect patients’ autonomy but disagree with measures decided by others that have an impact on patients’ survival. They also agree with the administration of drugs for suffering control, even considering the possibility of shortening life. (shrink)

BackgroundCompetent end-of-life care is an essential component of total health care provision, but evidence suggests that it is often deficient. This study aimed to evaluate the knowledge and attitudes about key end-of-life issues and principles of good death among doctors in clinical settings.MethodsA cross-sectional study was conducted among allopathic medical doctors working in in-ward clinical settings of tertiary care hospitals in Sri Lanka using a self-administered questionnaire with open- and close-ended questions as well as hypothetical clinical scenarios. Univariate and logistic (...) regression analysis were used to identify the independent factors associated with knowledge and attitudes.ResultsOf the responders who had not been a caregiver for a terminally ill relative (n = 390), 57.9% were men with a mean age of 36.5 years (SD = 8.2). Compared to undergraduate (65.6%; n = 256), only 27.4% (n = 107) had received end-of-life care training at postgraduate level. Only 65.9% of doctors favoured disclosing terminal prognosis to patients; 27.7% of doctors were aware of advance directives; 14.6% were aware of the correct time of death when certifying brain death; 70.3% felt more comfortable in withholding than withdrawing life-sustaining treatment; 61.3% were aware of do-not-attempt cardiopulmonary resuscitation (DNACPR) decisions while 26.7% felt reluctant to administer it; 15.1% thought that all life-sustaining therapy should be withdrawn with a DNACPR decision; and only17.9% were able to name the four principles of medical ethics while 57.9% could not name a single. Participants scored a mean of 9.2 (SD = 3.9) of a maximum 14 points when tested on principles of a ‘good death’. Doctors who had pursued postgraduate studies were more likely to be aware of breaking bad news (adjusted-Odds-Ratio:1.99; 95%CI = 1.19–3.32), advance directives (adjusted-OR: 4.15; 95%CI = 2.49–6.94), aware of certifying the correct time of death (adjusted-OR:2.37; 95%CI = 1.33–4.2) and less reluctant to make DNACPR decisions (adjusted-OR:1.74; 95%CI = 1.13–2.68). Doctors who had worked in ICU were more comfortable withholding than withdrawing treatment (adjusted-OR:1.99; 95%CI = 1.2–3.31).ConclusionsKnowledge and attitudes about end-of-life care, good death and principles of medical ethics among doctors in Sri Lanka were suboptimal. Structured training of end-of-life care needs to be integrated within curricula and in-service training. (shrink)

_The Code of Ethics and Professional Responsibilities for Healthcare Ethics Consultants_ instructs clinical ethics consultants to preserve their professional integrity by “not engaging in activities that involve giving an ethical justification or stamp of approval to practices they believe are inconsistent with agreed-upon standards” (ASBH, 2014, p. 2). This instruction reflects a larger model of how to address value uncertainty and moral conflict in healthcare, and it brings up some intriguing and as yet unanswered questions—ones that the drafters of the (...) _Code_, and the profession more broadly, should seek to address in upcoming revisions. The objective of this article is to raise these questions as a way of urging greater clarification of the _Code’s_ overall approach to professional integrity, its meaning, and implications. (shrink)

The debate between Ursin (2019) and Wilkinson and colleagues (2019) in this issue of The American Journal of Bioethics underscores the long-standing theoretical controversy about the equivalence of...