In assisted dying, the end-of-life trajectory is shortened to relieve unbearable suffering. Unbearable suffering is defined broadly enough to include cognitive (early dementia), psychosocial or existential distress. It can include old-age afflictions that are neither life-threatening nor fatal in the “vulnerable elderly”. The voluntary refusal of food and fluids (VRFF) combined with continuous deep sedation (CDS) for assisted dying is legal. Scientific understanding of awareness of internal and external nociceptive stimuli under CDS is rudimentary. CDS may blunt the wakefulness (...) component of human consciousness without eradicating internal affective awareness of thirst and hunger. Patients may suffer because of the slow dying process following dehydration and starvation. The difficulty to adequately control distress, without bringing the dying process to a rapid conclusion by lethal pharmacological interventions, can cause feelings of guilt among hospice and medical staff. Furthermore, the double-effect principle is not applicable in these situations because the primary objective of VRFF is to hasten death. Legal and societal debate should focus on sharpening the boundaries between assisted dying and palliative care. This separation is necessary to: 1) uphold trust in the patient-phyician relationship, and 2) preserve integrity and ethics of the medical profession. (shrink)

Palliative care names as one of its central aims to prevent and relieve suffering. Following the concept of “total pain”, which was first introduced by Cicely Saunders, PC not only focuses on the physical dimension of pain but also addresses the patient’s psychological, social, and spiritual suffering. However, the goal to relieve suffering can paradoxically lead to a taboo of suffering and imply adverse consequences. Two scenarios are presented: First, PC providers sometimes might fail their own ambitions. If all other (...) means prove ineffective terminal sedation can still be applied as a last resort, though. However, it may be asked whether sedating a dying patient comes close to eliminating suffering by eliminating the sufferer and hereby resembles physician-assisted suicide, or euthanasia. As an alternative, PC providers could continue treatment, even if it so far prove unsuccessful. In that case, either futility results or the patient might even suffer from the perpetuated, albeit fruitless interventions. Second, some patients possibly prefer to endure suffering instead of being relieved from it. Hence, they want to forgo the various bio-psycho-socio-spiritual interventions. PC providers’ efforts then lead to paradoxical consequences: Feeling harassed by PC, patients could suffer even more and not less. In both scenarios, suffering is placed under a taboo and is thereby conceptualised as not being tolerable in general. However, to consider suffering essentially unbearable might promote assisted dying not only on an individual but also on a societal level insofar as unbearable suffering is considered a criterion for euthanasia or PAS. (shrink)

Background As Korean neonatal nurses frequently experience the deaths of infants, moral distress occurs when they provide end-of-life care to the infants and their families. Although they need to care for the patients’ deaths and consequently experience burnout and turnover due to moral distress from the situation, there is a lack of a support for nurses. Moreover, not much information is available on the moral distress of neonatal nurses. There is a need to better understand Korean neonatal (...) nurses’ moral distress to develop and implement appropriate supports. Objective This study aimed to describe nurses’ experience of moral distress when they provide end-of-life care to infants and their families in neonatal intensive care units. Research design This is a secondary analysis qualitative study. Content analysis was performed based on Corley’s theory of moral distress to develop a codebook and identify themes regarding moral distress among the nurses. Participants and research context Qualitative data were collected from 20 nurses working in two NICUs in Seoul, South Korea. Ethical considerations The original study obtained permission from a university’s institutional review board (IRB). This secondary analysis study obtained the exemption from another university’s IRB. Nurses’ participation was voluntary and confidential. Findings The nurses’ moral distress was derived when they faced moral constraints and/or moral conflicts. Two distinct categories of moral constraints and four distinct categories of moral conflicts were identified among the neonatal nurses. In addition, impacts of moral distress on patients and nurses were identified. Conclusions This study identified occasions neonatal nurses experience moral distress, and thus can guide in developing and implementing effective interventions to decrease their moral distress and improve their resilience in end-of-life care by providing insight into neonatal nurses’ needs for support in end-of-life care. (shrink)

This paper discusses the question of when pain and distress relief known to hasten death would cross the line between permissible conduct and killing. The issue is discussed in the context of organ donation after cardiac death, and considers the administration of analgesics, sedatives, and the controversial use of paralysing agents in the provision and withdrawal of ventilation.

An increasing shortage of transplant donor organs currently results in an escalating number of preventable human deaths. Xenotransplantation. the use of animal organs for transplantation into humans, is now heralded as medicine's most viable answer to the urgent and insurmountable human organ scarcity. Although claimed to be a biomedical prerogative, xenotransplantation is a cultural phenomenon - a procedure engaging both the physical and symbolic manipulation of human and nonhuman bodies, thereby transforming corporeality, identity, and culture. Biomedical and scientific discourses about (...) xenografts have obscured issues related to nonhuman animals and also could be distressful to human organ recipients, revealing that the xenograft may not be widely embraced. (shrink)

Moral distress is defined as the inability to act according to one’s own core values. During the COVID-19 pandemic, moral distress in medical personnel has gained attention, related to the impact of pandemic-associated factors, such as the uncertainty of treatment options for the virus and the accelerated pace of deaths. Measures to provide aid and mitigate the long-term pandemic effect on providers are starting to be designed. Yet, little has been said about the moral distress experienced by (...) patients and the relational and additive effect on provider moral distress. Pandemic-associated factors affecting moral distress in patients include the constraining effects of isolation on spiritual and religious traditions as well as the intentional separation of patients from their families. This paper will explore the idea that patients are suffering their own moral distress and further how this impacts the intensity of moral distress experienced by the providers—nurses and physicians. The paucity of research in this area with the implications on patient’s distress, decision making, and distress experienced by providers compels further investigation and analysis. (shrink)

Their nursing experience and/or training may lead students preparing for the nursing profession to have less moral distress and more favorable attitudes towards a hastened death compared with those preparing for other fields of study. To ascertain if this was true, 66 undergraduates (54 women, 9 men, 3 not stated) in southeastern USA completed measures of moral distress and attitudes towards hastening death. Unexpectedly, the results from nursing and non-nursing majors were not significantly different. All the (...) present students reported moderate moral distress and strong resistance to any efforts to hasten death but these factors were not significantly correlated. However, in the small sample of nurses in training, the results suggest that hastened death situations may not be a prime reason for moral distress. (shrink)

The COVID-19 pandemic has affected the well-being and mental health of populations worldwide. This study sought to examine whether religious coping mediated the relationship between COVID-19-related fear and death distress. We administered an online survey to 390 adult participants (66.15% females; Mage = 30.85 ± 10.19 years) across Turkey. Participants completed a series of questionnaires measuring the fear they had experienced during the COVID-19 pandemic, their levels of religious coping and their levels of death anxiety and depression. (...) Our findings revealed that (a) fear of COVID-19 was associated with positive religious coping, negative religious coping, death anxiety and death distress; (b) negative religious coping was associated with death anxiety and depression and (c) negative religious coping mediated the relationship between fear of COVID-19 and death anxiety and depression. These results highlight the detrimental effect of negative religious coping in increasing the adverse effect of the COVID-19 fear on death depression. (shrink)

Throughout history Christians have responded to the need for direct care for the sick in imitation of the healing ministry of Jesus and in the creation of hospitals as signs of God’s love. The COVID-19 pandemic has created a global, unprecedented modern experience of vulnerability. It has resulted in moral distress for doctors and health care workers in overwhelmed facilities. It has also revealed profound inequity in access to health care, the tragic consequences of the neglect of public health (...) and its focus on communities, and the effects of poverty and marginalization on the risk of illness and death. This paper proposes insights from Catholic social teaching that can guide a renewal of public health by rebalancing duties to individuals and communities, and renewing medicine as a public trust. These insights can assist in reducing moral distress in scarcity. (shrink)

A man of twenty‐two is admitted to an intensive care unit (ICU)after intentionally overdosing on Tylenol. The nurse asks the intensivist on call if someone from the local organ procurement organization should be called in to speak to the family, given a worsening clinical picture and the likelihood that the patient will progress to brain death. The patient's condition is such that multiple organs, including his heart and lungs, could be donated. The intensivist instructs the nurse not to call, (...) as he wishes to have an end‐of‐life discussion with the parents. He believes that the parents should know that death is imminent and that further interventions will not save their son. He argues that introducing the OPO at this point will cause the family more distress. He wants the parents to be able to give their son a peaceful death without additional stressors. What are the broader implications of not calling the OPO at this juncture? Does the nurse involved have an ethical obligation to override the intensivist's instructions by calling the OPO? Should the fact that multiple healthy organs could be harvested from this patient's body have any bearing on the decision to call the OPO? (shrink)

BackgroundMoral distress is a phenomenon that all nurses experience at different levels and contexts. The level of moral distress can be affected by individual values and the local culture. The sources of the values shape the level of moral distress experienced and the nurses’ decisions.AimThe present scoping review was conducted to examine the situations that cause moral distress in ICU nurses in different countries.ResultsA scoping review methodology was adopted for the study, in line with the approach (...) of Arksey, and O'Malley Literature was searched within PubMed/Medline, Scopus, Web of Science, and PsycINFO indexed keywords such as “moral distress”, “Critical Care Nurse”, and “Moral Distress Scale-Revised”. Of the 617 identified citations, 12 articles matched the inclusion criteria.ConclusionThe moral distress experienced in countries and regions with similar cultures and geographies was parallel. The situations that cause the most moral distress are futile-care to prolong death, unnecessary tests and treatments, and working with incompetent healthcare personnel. (shrink)

Many find the prospect of death distressing at least partly because they believe that death deprives its subject of life’s benefits. Properly qualified, the belief is surely true. But should its truth lead us to conclude that there is something dreadful or awful about death, something that merits distress?

Moral distress is an experience of profound moral compromise with deeply impactful and potentially long‐term consequences to the individual. Critical care areas are fraught with ethical issues, and end‐of‐life care has been associated with numerous incidences of moral distress among nurses. One such area where the dichotomy of life and death seems to be at its sharpest is in the pediatric intensive care unit. The purpose of this study was to understand the moral distress experiences of (...) pediatric intensive care nurses when caring for pediatric patients at the end of life. A secondary analysis was undertaken of seven transcripts from registered nurses across six Canadian pediatric intensive care units and produced three themes: under prioritization of child patient dignity, burden of insider knowledge, and environmental constraints on nursing roles and responsibilities. When caring for patients at the end of life, nurses experienced moral distress when a dignified death was not realized. Furthermore, despite interprofessional collaboration efforts in Canada, the concept of silo mentality persists and contributes to moral distress. Organizational involvement is needed to address moral distress in pediatric intensive care nurses both to achieve a dignified death for child patients and in addressing silo mentality. (shrink)

While there is a great deal to agree with in the essay Expanded Terminal Sedation in End-of-Life Care there is, we think, a need to more fully appreciate the humanistic side of both palliative and end-of-life care.1 Not only does the underlying philosophy of palliative care arguably differ from that which guides curative medicine,2 dying patients are in a uniquely vulnerable position given our cultural disinclination towards open discussions of death and dying. In this brief response, we critically engage (...) Gilbertson et al ’s essay and seek to contextualise the perspective they put forward. According to Cassell, we should distinguish between pain and suffering.3 The former often gives rise to the latter, but suffering has other causes. This includes existential distress, indicating that, unlike pain, suffering is not simply physiological phenomena. Suffering involves the disintegration of the person, meaning that it can impact patient autonomy. Certainly, that a patient is suffering does not equate to a lack autonomy. Nevertheless, we should take care when making decisions in circumstance where the integrity of our embodied personhood is under threat, something that is clearly the case for those who are dying, particularly those who have refractory symptoms while doing so. Generally speaking, refractory symptoms are those which are intractable. They persist despite attempts at palliation. While this implies that such symptoms—and the suffering they cause—cannot be reversed this is not necessarily the case. Not only can the symptoms experienced by dying patients change …. (shrink)

Survivors of trauma commonly report feeling as though a part of themselves has died. This article provides a theoretical interpretation of this phenomenon, drawing on Waldenfels' notion of the split self. We argue that trauma gives rise to an explicit tension between the lived and corporeal body which is so profoundly distressing that it can be experienced by survivors as the death of part of oneself. We explore the ways in which this is manifest in the posttraumatic phenomena of (...) dissociation; indescribability; and the fragmentation and repetition of time. Acknowledging that the traumatic loss of part of oneself involves significant grief, we then consider whether the bereavement literature might be helpfully applied. We focus specifically upon the continuing bonds model, which emphasizes an ongoing and meaningful relationship with the deceased through an active process of memorializing. In considering how this might be appropriated to the death of the self in trauma, we suggest that the development of an intrapersonal relationship between parts lost and living might, over time, offer a unique way in which to adapt to loss and approach the future. (shrink)

The aim of this study was to describe Tanzanian nurses' meaning of and experiences with ethical dilemmas and workplace distress in different care settings. An open question guide was used and the study focused on the answers that 29 registered nurses supplied. The theme, `Tanzanian registered nurses' invisible and visible expressions about existential conditions in care', emerged from several subthemes as: suffering from (1) workplace distress; (2) ethical dilemmas; (3) trying to maintaining good quality nursing care; (4) lack (...) of respect, appreciation and influence; and (5) a heavy workload that did not prevent registered nurses from struggling for better care for their patients. The analysis shows that, on a daily basis, nurses find themselves working on the edge of life and death, while they have few opportunities for doing anything about this situation. Nurses need professional guidance to gain insight and be able to reflect on their situations, so that they do not become overloaded with ethical dilemmas and workplace distress. (shrink)

As recently as 1970 about one-fifth of the children living in single-parent households resided in ones created by the death of a father. In colonial and nineteenth-century America, death was a much more important factor in disrupting parent-child relationships than it is today. Past societal reaction to the death of a parent continues to influence social policy; for example, widows and their dependent children receive more public assistance than divorced mothers or single mothers with children born out-of-wedlock. (...) Although the material conditions for widows have improved over time, the social network available to help them cope with the emotional distress caused by the death of a husband probably has diminished. (shrink)

Ostracism is known to cause psychological distress. Thus, defining the factors that can lead to recovery or diminish these negative effects is crucial. Three experiments examined whether suggesting the possible causes of ostracism to victims could decrease or eliminate their ostracism distress. They also examined whether death-anxiety mediated the association between the suggested possible cause for being ostracized and recovery. Participants were randomly assigned to six experimental and control groups and were either ostracized or included in a (...) game of Cyberball. Two control conditions were used: participants who were ostracized but received no explanation and participants who were included. Immediately after the ostracism experience, participants in the experimental groups were presented with one of four causes for being ostracized, using locus of control and stability, the two causal dimensions of Weiner’s attribution theory. After a short delay they were administered a mood or needs-satisfaction questionnaire. The results highlight the interaction between locus of control and stability, and underscore the relative importance of different attributions in alleviating self-reported ostracism distress. Specifically, both external and unstable attributions decreased distress, and an unstable attribution led to complete recovery in some participants. Thus, recovery from ostracism may be accelerated when the victim receives an explanation for ostracism that attributes the incident to unstable, external causes soon after the incident. Death-anxiety fully mediated the association between locus of control attribution and mood, but for on needs-satisfaction or the stability of the attribution. (shrink)

The coronavirus disease pandemic has not only brought the risk of death but has brought unbearable psychological pressures to the people. Mental health of COVID patients is expected to be affected by the continuous spread of the pandemic. This study aims to find the mediating role of coping styles in the relationship between life orientation and psychological distress among COVID recovered patients. It was hypothesized that: life orientation is likely to have a relationship with coping; coping is likely (...) to have a relationship with psychological distress and coping is likely to mediate the relationship between life orientation and psychological distress among patients recovered from COVID. For this purpose, 378 COVID-10 recovered patients’ men and women. Urdu translations of the Life Orientation scale revised, Brief Coping Orientation to Problem Experienced and Impact of event scales were used to collect data. Results show that emotion-focused and avoidant coping mediate the relationship between life orientation and psychological distress. The research has implications for mental health practitioners and individuals dealing with health-related issues. (shrink)

Some brain injured patients are left in a permanent vegetative state, i.e., they have irreversibly lost their capacity for consciousness but retained some autonomic physiological functions, such as breathing unaided. Having discussed the controversial nature of the permanent vegetative state as a diagnostic category, we turn to the question of the patients’ ontological status. Are the permanently vegetative alive, dead, or in some other state? We present empirical data from interviews with relatives of patients, and with experts, to support the (...) view that the ontological state of permanently vegetative patients is unclear: such patients are neither straightforwardly alive nor simply dead. Having defended this view from counter-arguments we turn to the practical question as to how these patients ought to be treated. Some relatives and experts believe it is right for patients to be shifted from their currently unclear ontological state to that of being straightforwardly dead, but many are concerned or even horrified by the only legally sanctioned method guaranteed to achieve this, namely withdrawal of clinically assisted nutrition and hydration. A way of addressing this distress would be to allow active euthanasia for these patients. This is highly controversial; but we argue that standard objections to allowing active euthanasia for this particular class of permanently vegetative patients are weakened by these patients’ distinctive ontological status. (shrink)

Following the lead of Hannah Arendt and others, I want to argue that the imperial mystique seen in the British Empire found its way into Germany’s expansionist ambitions. I am concerned with the emotional costs of oppression, or what I call soul death. I focus on three key writers of the 20th century: Doris Lessing, Nadine Gordimer, and J. M. Coetzee, placing their writings in the context of war trauma and the barbarities associated with 20th century totalitarianism. My argument (...) seeks to elucidate the relationship between postcoloniality and the wars that shaped that century. These narratives of distress will be juxtaposed with novels by Imre Kertész and Arnošt Lustig whose writings of the Holocaust and the war atmosphere on the Eastern Front illuminate scenes of trauma and personal anguish. Here my study draws on the work of recent psychologists whose term soul murder is made much of. These writers’ works can be more fully understood to reveal patterns of personal destruction that are part of living under imperialism. They bring to the forefront behaviours that expose the debasement and hardening witnessed in the early decades of the century. (shrink)

The paediatric Moral Distress Scale-Revised was previously translated and adapted to Swedish paediatric oncology. Cognitive interviews revealed five not captured situations among the 21 items, resulting in five added items: 22) Lack of time for conversations with patients/families, 23) Parents’ unrealistic expectations, 24) Not to talk about death with a dying child, 25) To perform painful procedures, 26) To decide on treatment/care when uncertain. The aim was to explore experiences of moral distress in the five added situations (...) in the Swedish paediatric MDS-R, among healthcare professionals in paediatric oncology. In this national cross-sectional survey, the Swedish paediatric MDS-R, including five added items, were used. Descriptive statistics, non-parametric analysis of differences between professions and a MDS-R score for each item were calculated. Internal consistency was tested using Cronbach’s alpha and inter-item correlation test. HCPs at all six Swedish paediatric oncology centres participated. The Regional Ethical Review Board had no objections. Consent was assumed when the survey was returned. Nursing assistants reported higher intensity and lower frequency on all added items; registered nurses reported a higher frequency on item 22–25; medical doctors reported higher MDS-R score on item 26. On item 22, intensity was moderate for RNs and MDs and high for NAs, and frequency was high among all. Item 22, had the second highest MDS-R score of all 26 for all professional groups. On item 23, the level of disturbance was low but it occurred often. The 26-item version showed good internal consistency for the overall sample and for all professional groups. However, item 22 and 24 could be viewed as redundant to two of the original 21. In accordance with other studies, the intensity was higher than the frequency, however, the frequency of the added items was higher than of the original items. In line with previous research, item 22 and 23 are important elements of moral distress. RNs experience the situations more often while NAs find them more disturbing. The results indicate that the added items are important in capturing moral distress in paediatric oncology. (shrink)

This paper describes a practice innovation: the addition of formal weekly discussions of patients with prolonged PICU stay to reduce healthcare providers’ moral distress and decrease length of stay for patients with life-threatening illnesses. We evaluated the innovation using a pre/post intervention design measuring provider moral distress and comparing patient outcomes using retrospective historical controls. Physicians and nurses on staff in our pediatric intensive care unit in a quaternary care children's hospital participated in the evaluation. There were 60 (...) patients in the interventional group and 66 patients in the historical control group. We evaluated the impact of weekly meetings to establish goals of care for patients with longer than 10 days length of stay in the ICU for a year. Moral distress was measured intermittently and reported moral distress thermometer scores fluctuated. "Clinical situations" represented the most frequent contributing factor to moral distress. Post intervention, overall moral distress scores, measured on the moral distress scale revised, were lower for respondents in all categories, and on three specific items. Patient outcomes before and after PEACE intervention showed a statistically significant decrease in PRISM indexed LOS, a statistically significant increase in both code status changes DNR, and in-hospital death, with no change in patient 30 or 365 day mortality. The addition of a clinical ethicist and senior intensivist to weekly inter-professional team meetings facilitated difficult conversations regarding realistic goals of care. The study demonstrated that the PEACE intervention had a positive impact on some factors that contribute to moral distress and can shorten PICU length of stay for some patients. (shrink)

Copyright © 2015 by the Society of Criti. Objective: Global lung stress varies considerably with low tidal volume ventilation for acute respiratory distress syndrome. High stress despite low tidal volumes may worsen lung injury and increase risk of death. No widely available parameter exists to assess global lung stress. We aimed to determine whether the volume delivered during a recruitment maneuver is inversely associated with lung stress and mortality in acute respiratory distress syndrome. Design: Substudy of an (...) acute respiratory distress syndrome clinical trial on esophageal pressure-guided positive end-expiratory pressure titration. Setting: U.S. academic medical center. Patients: Forty-two patients with acute respiratory distress syndrome in whom airflow, airway pressure, and esophageal pressure were recorded during the recruitment maneuver. Interventions: A single recruitment maneuver was performed before initiating protocol-directed ventilator management. Recruitment maneuvers consisted of a 30-second breath hold at 40 cm H2O airway pressure under heavy sedation or paralysis. VRM was calculated by integrating the flow-time waveform during the maneuver. End-inspiratory stress was defined as the transpulmonary pressure during end-inspiratory pause of a tidal breath and tidal stress as the transpulmonary pressure difference between end-inspiratory and end-expiratory pauses. Measurements and Main Results: VRM ranged between 7.4 and 34.7 mL/kg predicted body weight. Lower VRM predicted high end-inspiratory and tidal lung stress. After adjusting for Pao2/Fio2 and either driving pressure, tidal volume, or plateau pressure and positive end-expiratory pressure, VRM remained independently associated with both end-inspiratory and tidal stress. In unadjusted analysis, low VRM predicted increased risk of death. VRM remained significantly associated with mortality after adjusting for study arm. Conclusions: Low VRM independently predicts high lung stress and may predict risk of death in patients with acute respiratory distress syndrome. (shrink)

The strongly resilient are able to quickly get over the loss of their beloved. This is not an entirely attractive capacity. In this paper, I argue that it is appropriate to be distressed about the fact that we might, quickly or slowly, get over the death of our loved ones. Moller argues that the principal problem with resilience is that it puts us in a defective epistemological position, one where we are no longer able to appreciate the significance of (...) what we have lost. Although I think this is a genuine concern, it does little to capture the source of our dismay at the prospect. The problem is not that not caring will make us blind to our beloved's past importance, but that we simply will no longer care for our beloved. The source of our dismay is captured nicely in a passage from Proust that Moller cites but quickly dismisses in two separate papers. My goal here is to defend something akin to the Proustian view that resilience amounts to a death of self. (shrink)

Assessments of animal experience and consciousness are embedded in all issues of animal welfare policy, and the field of animal welfare science has been developed to make these evaluations. In light of modern studies of the social construction of scientific knowledge, it is surprising how little attention has been paid to date on how crucial evaluations about animals are made. In this paper, I begin to fill that gap by presenting a historical case study of the attempt to define the (...) pain and distress of one common practice in animal research-the use of the tabletop guillotine to decapitate laboratory rodents. I describe the negotiations involved in reaching consensus on the meaning of the available data and caution animal care and use committees that they should always work with the realization that our scientific knowledge of what animals experience is partial and provisional knowledge at best. (shrink)

In this paper, I explore the connection between certain metaphysical views of time and emotional attitudes concerning one’s own death and mortality. I argue that one metaphysical view of time, B-theory, offers consolation to mortals in the face of death relative to commonsense and another metaphysical view of time, A-theory. Consolation comes from three places. First, B-theory implies that time does not really pass, and as a result one has less reason to worry about one’s time growing short. (...) Second, B-theory entails that there is a real sense in which one’s death does not result in one’s annihilation, and this fact can temper feelings of existential distress. Third, B-theory has the consequence that the benefits one has lost have concrete existence, and this fact can mitigate the emotional significance of the losses of death. (shrink)

Elective ventilation (EV) is ventilation—not to save a patient's life, but with the expectation that s/he will die—in the hope that organs can be retrieved in the best possible state. The arguments for doing such a thing rest on the value of the lives being saved by the donated organs, maximally honouring the donor's wishes where the patient can be reasonably thought to wish to donate, and a general principle in favour of organ donation where possible as an expression of (...) human solidarity. Arguments against include difficulties surrounding the patient's consent to donation (including the risk of them surviving in an unacceptably bad state), the possibility of changing our perception of organ donation and care in dying, and the moral distress potentially caused to intensive care unit (ICU) staff involved in EV. EV can occur before or after the patient is declared dead and it is EV before the declaration of death (EVb) that occasions the ethical worries. I argue that when we acknowledge the tragedy involved, attend sensitively to the grief proper to human death, and ensure that we are not working in an ethical and legal climate that increases the likelihood of inadvertent survival in an unacceptably bad state, EVb is ethically defensible. (shrink)

BackgroundVerbal autopsy is a pragmatic approach for generating cause-of-death data in contexts without well-functioning civil registration and vital statistics systems. It has primarily been conducted in health and demographic surveillance systems (HDSS) in Africa and Asia. Although significant resources have been invested to develop the technical aspects of verbal autopsy, ethical issues have received little attention. We explored the benefits and burdens of verbal autopsy in HDSS settings and identified potential strategies to respond to the ethical issues identified.MethodsThis research (...) was based on a case study approach centred on two contrasting HDSS in Kenya and followed the Mapping-Framing-Shaping Framework for empirical bioethics research. Data were collected through individual interviews, focus group discussions, document reviews and non-participant observations. 115 participants were involved, including 86 community members (HDSS residents and community representatives), and 29 research staff (HDSS managers, researchers, census field workers and verbal autopsy interviewers).ResultsThe use of verbal autopsy data for research and public health was described as the most common potential benefit of verbal autopsy in HDSS. Community members mentioned the potential uses of verbal autopsy data in addressing immediate public health problems for the local population while research staff emphasized the benefits of verbal autopsy to research and the wider public. The most prominent burden associated with the verbal autopsy was emotional distress for verbal autopsy interviewers and respondents. Moral events linked to the interview, such as being unsure of the right thing to do (moral uncertainty) or knowing the right thing to do and being constrained from acting (moral constraint), emerged as key causes of emotional distress for verbal autopsy interviewers.ConclusionsThe collection of cause-of-death data through verbal autopsy in HDSS settings presents important ethical and emotional challenges for verbal autopsy interviewers and respondents. These challenges include emotional distress for respondents and moral distress for interviewers. This empirical ethics study provides detailed accounts of the distress caused by verbal autopsy and highlights ethical tensions between potential population benefits and risks to individuals. It includes recommendations for policy and practice to address emotional and moral distress in verbal autopsy. (shrink)

While extensive scholarship has been dedicated to the emotional experiences of transplant patients, little is known about the emotional experiences of transplant co‐ordinators. Semi‐structured face‐to‐face interviews conducted with ten transplant co‐ordinators who have worked for more than 20 years in this job. The transplant co‐ordinators spoke of negative feelings and moral distress with regard to futile care of deceased donor family members as well as of living donors. Transplant co‐ordinators experience intense negative feelings, emotional pain, and moral distress (...) on a daily basis. Transplant co‐ordinators play a pivotal role in the process of obtaining consent for live or dead donation of organ; however, their well‐being and job satisfaction are impaired by contradictions between their moral values and the tasks they are instructed to perform. The study exposes the silent emotional suffering of transplant co‐ordinators; main findings show that the transplant co‐ordinators are torn between contradictory expectations and a gap between values and praxis. It is recommended to offer them training and support for the sake of their retention. (shrink)

In this issue, Paul Menzel and M. Colette Chandler‐Cramer propose a novel advance directive. Besides giving competent people the opportunity to refuse future life‐prolonging medical interventions, they say, advance directives should give people the opportunity to refuse ordinary food and water if they later experience severe dementia.This proposal is both appealing and unsettling. It is appealing because it offers some relief to people seeking to avoid the prolonged decline and extreme incapacity they have witnessed in relatives and friends with advanced (...) dementia. But does it sufficiently protect patients? Menzel and Chandler‐Cramer want to empower competent persons to impose potential discomfort and distress on a later self who cannot understand the reasons for that choice. In this situation, the price of respecting autonomy is paid by a frail incapacitated patient who has no idea why food and water are no longer offered to her. (shrink)

We first heard about this case from nurses in one of our intensive care units while we were conducting an inservice. When the session was over, we discussed it between ourselves, and decided that it must have been misrepresented. The case had been presented as one of a teenager who was brain dead, had been so for six months, yet had been brought into the ICU for treatment. We have run into this before, we thought: medical professionals confusing brain (...) class='Hi'>death with persistent vegetative state. But, of course, we reasoned, no one can be brain dead for six months. To us, as it would to many, the case sounded like a clinical and ethical impossibility. A week later, we were called by an attending physician from another ICU, at the urging of that unit's nursing staff. They had a patient who was brain dead, whose presence was causing distress among the staff. Ronald Chamberlain, a fifteen-year-old boy, had been a patient at a nearby longterm rehabilitation facility that is equipped to care for ventilator-dependent patients. (shrink)

We first heard about this case from nurses in one of our intensive care units while we were conducting an inservice. When the session was over, we discussed it between ourselves, and decided that it must have been misrepresented. The case had been presented as one of a teenager who was brain dead, had been so for six months, yet had been brought into the ICU for treatment. We have run into this before, we thought: medical professionals confusing brain (...) class='Hi'>death with persistent vegetative state. But, of course, we reasoned, no one can be brain dead for six months. To us, as it would to many, the case sounded like a clinical and ethical impossibility.A week later, we were called by an attending physician from another ICU, at the urging of that unit's nursing staff. They had a patient who was brain dead, whose presence was causing distress among the staff. Ronald Chamberlain, a fifteen-year-old boy, had been a patient at a nearby longterm rehabilitation facility that is equipped to care for ventilator-dependent patients. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:“We Need to Cut the Neck!”Confronting Psychological and Moral Distress during Emergency Cricothyrotomy1Stephanie CooperEnoughYou didn’t die in the ER, but rather, began your inexorable demise. The last, first, and only words I ever heard you utter was the weak mewl “tight, tight” as the blood pressure cuff constricted your left arm. You were 98–years–old, bed–bound, at the end. Your world was already partitioning itself from us, your brain (...) tunneling down the uneven corridors of consciousness. A concretion of otoliths muffled your hearing, and fatigue burdened your ancient heart.Your name–band encircled your skinny ankle like a bird. Deformed by arthritis, you were caged within yourself, imprisoned by senescence. You could not declare yourself to us. Words disintegrated into moans and your grimace became animal.When you came back from x–ray—hypotensive with multiple neck fractures confirmed—you could speak no more. Your pulse slowed, your blood pressure plummeted. I jammed a gloved finger against your femoral pulse, faint and tired. [End Page E5]“What’s her DNR status?” I gravely asked your nurse.The DNR paperwork for once had arrived with the patient. “No CPR” she said with relief. But then the paperwork went on, forcing me—the waitress of tragedy—to serve up the hash of an impossible menu.As health care providers, we are all often tasked with performing contradictory actions: the pain of IV insertion followed by the morphine push, drilling deeper into broken bone in order to plate it, the inadvertent cracking of ribs during chest compressions. We sometimes must perform violent action in the hope of sustaining and resurrecting life. We are asked to perform the impossible, the contradictory, the painful. And sometimes the actions we must take catalyze an inexorable chain reaction of actions, which can end in death–prolonging and painful interventions that we did not intend.Although our culture may imagine that one can choose one’s meal at the end–of–life fast–food franchise of death, such is not the case. You can’t suddenly decide you’re a vegetarian. You can’t order the cheeseburger without the cheese—and we all are getting the burger, in the end. Ordering the heart–squeezing drugs without the CPR to circulate them, or the antibiotics without the fluid to counter dehydration, is like ordering the burger without the bun. Sometimes the possible choices are not necessarily realistic choices. You get served what you get served, and perhaps we should question the assumption that we have the ability to choose at all.Your DNR form proclaimed no CPR but then said that antibiotics and intubation were okay—the cheeseburger without the cheese. An unfortunate choice for you, me, and the rest of us, as your death menu led to a very unhappy meal.You were comatose. I stuck a tongue blade deep into your desiccated throat. You did not gag. This means I should have intubated you, but morally, I couldn’t. To what end? You were 98 years old, broken, moribund. If you hadn’t suffered multiple neck fractures, or if you were a vibrant elder who had just walked off Mt. Rainier, maybe the story would have been different. But you? I doubted that you truly had a chance of ever feeling joy again. You were somebody’s wife, somebody’s mother. I knew this step would lead to the domino of unstoppable steps. I refused to flog your corpse.I called your daughter Kay on her cell phone, told her that you were in critical condition and that she should come to the ER immediately. But how to begin to tell a daughter her mother is dying, let alone over a cell phone? Gentle but surreal and impersonal, my voice tried to tell your daughter that the interventions you needed would likely kill you. I have seen enough human suffering to know. To me, the choices were clear: death by nature’s irrefutable course, versus a more painful, protracted, and violent death by what we’d do to you.Kay arrived in a wheelchair and scooted up to your bedside. Like all daughters, she wasn’t ready for you... (shrink)

Muraskas et al. and Hefferman and Heilig present the painfully elusive ethical questions regarding decisionmaking in the care of the extremely low birth weight infants in the intensive care nursery. At what gestation or size do we resuscitate? Can we stop resuscitation after we have started? How much money is too much to spend? Is the distress of the parents of the ELBW infant, the anguish of their caregivers, and the moral and ethical uncertainty of the approach to these (...) infants too much to pay? Who speaks for the neonate: the parent, nurse, attorney, or physician? Ideally these questions should have been answered 30 years ago when modern neonatology embarked on a journey from where it could not return. A new breed of physician, called “neonatologist,” seduced by the high-tech lure and the promise of saving lives previously unsavable pioneered a lucrative and life-saving technological revolution in the care of premature newborns. This rapid advancement in neonatology occurred a few years after the death of a premature infant named Patrick Kennedy in 1963. While the country mourned, medical scientists vowed that this would not happen again. First continuous positive airway pressure, then mechanical ventilation, changed medical care of premature newborns forever. It began an era of euphoria and excitement. Neonatologists raced to push to the edge of newborn viability. What was the youngest salvageable gestational age? What was the smallest that could be saved? Yes, we dreamed, and still do dream of artificial placentas. Ethical questions took a back seat in the search for the edge because the waters were uncharted and the tough questions could not be answered without experience. What was to be the cost in dollars and in anguish to save the Patrick Kennedys of the world? Triumphs led to grave concerns as we approached the edge. However, no advancement in neonatology has ever changed the ultimate questions. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:“Can They Do This?” Dealing with Moral Distress after Third–Party Termination of the Doctor–Patient RelationshipSusan McCammonNot so long ago, a storm badly damaged the tertiary care hospital in which I practice surgical oncology. In the aftermath of the storm, the institution determined it was no longer able to provide unreimbursed cancer care, and many of my patients were terminated by a form letter from the hospital. The helplessness (...) and outrage that I experienced when I was first handed one of these letters, crumpled from the damp fist of one of my patients, was immense, and frightening in its unfamiliarity: “Can they do this?” I asked repeatedly, ascending a hierarchy of authority, which was increasingly reticent and then elusive. In short, the answer was “yes.”While this decision was made by the administration, its enactment was delegated to the physicians. Thus, not only were the physicians not involved in the decision to terminate their patients, they shouldered the burden of telling their patients that they would no longer be treated. The reason given—storm devastation—was contradicted by the orderly flow of insured patients in and out of unaffected clinics and hospitals.In those months, when the operating rooms were closed, I took to the road and learned about hospice and palliative care medicine on the ground. I drove from city to smaller city to the devastated countryside, locating my patients and providing all the care that I could with only my hands and mind and heart. I struggled with the limitations of the health care system and worked to rebuild a sustainable infrastructure at my own institution, all while trying to come to terms with bioethicist Haavi Morreim’s (1995) caution that “... it is not the physician who owes the resources at all. He cannot owe what others own and control, because moral obligations can only be assigned to those capable of fulfilling them” (p. 87).In considering my experience of moral distress over this period of time, I have reflected on the different connotations of the word, “practice.” I grappled with the philosophical terms “practice,” “praxis,” and “phronesis,” and I questioned their relevance to the word, as used in my professional life. However, in struggling to understand my moral obligations after the storm, when I was learning to do what I could, even when I couldn’t do what I felt like I should, I reconsidered. The elements of immersion, repetition, particularity, and utility that pervade this language of philosophers and artists turned out to be what preserved my ability [End Page 109] to practice medicine in a space holding only patient and practitioner.Many of the patients that I take care of are very poor. Many more are working but uninsured. This is a result of both their risk factors and the demographics and resources in my geographic catchment area. Their access to care was disrupted after a natural disaster and concerted efforts to reestablish it have not succeeded. Since then, I have learned how to tell people that they will die of cancer because they don’t have enough money. This is not a skill I was taught in medical school. I can talk about death, imminent or not, feared or anticipated. I can talk about unresectable tumors, treatments that have more risk than benefit (or no benefit at all), suffering beyond what has yet been experienced or imagined, helplessness, futility and grief. I could be neither surgeon nor oncologist without some facility with these. But I was unprepared for this move from medical to economic “can’t,” the nexus where an institutional “won’t” becomes a personal “can’t.”I should say here that I was not blind to the expense and technological hype of the American medico–industrial complex or our systematic marginalization of public health or the ever–present cries for health care reform. I understood that I was a steward and that I served both the individual and the society and had at my disposal what I was told were limited resources. These values, however, were only just being incorporated into the training of medical professionals; certainly they played no role in my own education. Morreim’s (1995) conclusion... (shrink)

Many students have experienced the death of a loved one, which increases their risk of grief and mental health problems. Formal and social support can contribute to better coping skills and personal growth in bereaved students. The purpose of this study was to examine the support that students received or wanted to receive and its relation to students’ mental health. We also looked at students’ needs when receiving support and barriers in seeking formal and social support. Participants completed an (...) online survey consisting of questions about their sociodemographic characteristics, the support they received or wanted to receive, and support needs and barriers in seeking support. The survey also included three scales assessing grief, mental health distress, and personal growth. First, we analyzed the data descriptively. Next, we used MANCOVA to examine whether students who did or did not receive or wanted more support differed in terms of their grief, mental health distress, or personal growth. About 30% of students needed more support and experienced more grief and mental health distress than students who had their support needs met. Students who received support experienced more personal growth and grief than students who did not receive support. Students indicated a need for feeling acknowledged and safe. Feeling like a burden to others and perceiving their problems as not serious enough to warrant support were common barriers to seeking support. Our results indicate that support should be provided actively to students after the death of a loved one, and support being available on an ongoing basis. (shrink)

Expressing doubts about death criteria can serve healthy purposes, but can also cause a number of harms, including decreased organ donation rates and distress for donor families and health care staff. This paper explores the various causes of doubts about death criteria—including religious beliefs, misinformation, mistrust, and intellectual questions—and recommends responses to each of these. Some recommended responses are relatively simple and noncontroversial, such as providing accurate information. However, other responses would require significant changes to the way (...) we currently do business. Policymakers should establish minimum national standards for determining death to foster a trustworthy system; academics and publishers have a duty to publish only materials that substantially engage and advance the debate to minimize the harm caused by divided expert opinion; and opposition to the dead donor rule should be conceptually separated from doubts about death criteria. (shrink)

Despite their growing popularity, little is known about the psychological effects of participating in past-life meditation groups in contemporary western contexts. We conducted a study to re-create some of the conditions observed in the field by facilitating a group of adults interested in exploring past life meditation. Before the session, participants completed a survey about their afterlife beliefs and associated experiences. Participants also completed questionnaires measuring meaningfulness in life and fear of death before and after the session. In the (...) sample (n = 125), just over half of the participants (52%) reported having a past life memory or vision during the session. Higher paranormal beliefs predicted reporting a past life memory or vision. We also found that having prior memories or visions of having lived before, but not the general belief in having a past life, predicted reporting having past life experiences during the session. Consistent with our predictions, participants who reported having a past life memory or vision also reported reduced existential death distress and increased meaningfulness in life following the session, compared to those who did not report these experiences. (shrink)

'Who is God?' becomes 'Where is God?' the shift in a question / Christian Duquoc -- 'Where is God?' the cry of the psalmists / Erhard S. Gerstenberger -- Sickness and the silence of God / Gregory Baum -- The presence and revelation of God in the world of the oppressed / Pablo Richard -- Guilty and without access to God / Andres Tornos -- Death, the ultimate form of God's silence / Pierre de Locht -- The metaphor of (...) God / Yves Cattin -- No more temple, no place for the spirit : tests for the institutional church / Isabelle Chareire -- 'We proclaim a crucified messiah' / Jose-Ignacio Gonzalez-Faus -- God sings in the night : ambiguity as invitation to believe / Richard G. Cote. (shrink)

Given the widening gap between the number of individuals on transplant waiting lists and the availability of donated organs, as well as the recent plateau in donations based on neurological criteria, there has been a growing interest in expanding donation after circulatory determination of death. While the prevalence of this form of organ donation continues to increase, many thorny ethical issues remain, often creating moral distress in both clinicians and families. In this article, we address one of these (...) issues, namely, the challenges surrounding patient and surrogate informed consent for donation after circulatory determination of death. First we discuss several general concerns regarding consent related to this form of organ donation, and then we address additional issues that are unique to three different patient categories: adult patients with medical decision-making capacity or potential capacity, adult patients who lack capacity, and pediatric patients. (shrink)

Continuous sedation is increasingly used as a way to relieve symptoms at the end of life. Current research indicates that some physicians, nurses, and relatives involved in this practice experience emotional and/or moral distress. This study aims to provide insight into what may influence how professional and/or family carers cope with such distress.

To the question that Kübler-Ross raises in her seminal text, On Death in Dying, “Are we becoming less human or more human?” (Adams 2019), Childers and Arnold highlight physician challenges in balan...

We describe and analyze 13 cases handled by our ethics consultation service (ECS) in which families requested continuation of physiological support for loved ones after death by neurological criteria (DNC) had been declared. These ethics consultations took place between 2005 and 2013. Patients’ ages ranged from 14 to 85. Continued mechanical ventilation was the focal intervention sought by all families. The ECS’s advice and recommendations generally promoted “reasonable accommodation” of the requests, balancing compassion for grieving families with other ethical (...) and moral concerns such as stewardship of resources, professional integrity, and moral distress. In cases we characterized as finitegoal accommodation, a “reasonable accommodation” strategy proved effective in balancing stakeholders’ interests and goals, enabling steady progress toward resolution. When a family objected outright to a declaration of DNC and asked for an indefinite accommodation, the “reasonable accommodation” approach offered clinicians little practical direction, and resolution required definitive action by either the family or the clinical team. Based on our analysis and reflections on these 13 cases, we propose ethically justified and practical guidelines to assist healthcare professionals, administrators, and ECSs faced with similar cases. (shrink)

Conflicts of interest. None to report. Despite widespread acceptance in the United States of neurological criteria to determine death, clinicians encounter families who object, often on religious grounds, to the categorization of their loved ones as “brain dead.” The concept of “reasonable accommodation” of objections to brain death, promulgated in both state statutes and the bioethics literature, suggests the possibility of compromise between the family’s deeply held beliefs and the legal, professional and moral values otherwise directing clinicians to (...) withdraw medical interventions. Relying on narrative to convey the experience of a family and clinical caregivers embroiled in this complex dilemma, the case analyzed here explores the practical challenges and moral ambiguities presented by the concept of reasonable accommodation. Clarifying the term’s meaning and boundaries, and identifying guidelines for its clinical implementation, could help to reduce uncertainty for both health care professionals and families and, thereby, the incremental moral distress such uncertainty creates. (shrink)

That which constitutes a ‘good death’, or dying well, has long been of interest to philosophers and clinicians alike. While difficult to define due to its deeply personal nature and dependency on spiritual and cultural beliefs and past experiences, Wilkinson1 has drawn parallels from art and music to consider key ethical components. Few in clinical practice would dispute that a ‘good death’ is one that does not rob the person of a valuable life, is aligned with the preferences (...) of the patient and/or their family, where comfort and solace is provided, distress to family and caregivers is minimised or even that dying is not prolonged. However, what is more contentious is how tensions within the principles of a ‘good death’ should be managed or prioritised. In the context of caring for critically ill babies and children, the tension often takes the form of prolonging the dying process through providing life-sustaining interventions to meet the needs of, and to lessen the longer term distress of, the bereaved family, who must live with the decisions that are made. Though often justifiable, such interventions may result in considerable moral distress within caregivers—particularly, as often the case, when interventions are perceived by some clinicians to be of greater benefit to the family than the patient. Some clinicians may have difficulty …. (shrink)

Typically, the determination of death by neurological criteria follows a very specific protocol. An apnea test is performed with further confirmation as necessary, and then mechanical ventilation is withdrawn with the consent of the family after they have had an opportunity to “say goodbye,” and at such a time to permit organ retrieval (with authorization of the patient or consent of the next of kin). Such a process maximizes transparency and ensures generalizability. In exceptional circumstances, however, it may be (...) necessary to deviate from this protocol in order to spare family members unnecessary suffering and to reduce moral distress felt by clinical staff. It may also be appropriate, we argue, to refrain from even inquiring about organ donation when the next-of-kin is not only certain to refuse, but lacks the decision-making capacity to potentially consent. The case described in this article calls into question generally reliable assumptions about determination of death by neurological criteria, where the best the clinical team could do for the patient and his family was “the least bad option.”. (shrink)

Muraskas et al. and Hefferman and Heilig present the painfully elusive ethical questions regarding decisionmaking in the care of the extremely low birth weight infants in the intensive care nursery. At what gestation or size do we resuscitate? Can we stop resuscitation after we have started? How much money is too much to spend? Is the distress of the parents of the ELBW infant, the anguish of their caregivers, and the moral and ethical uncertainty of the approach to these (...) infants too much to pay? Who speaks for the neonate: the parent, nurse, attorney, or physician? Ideally these questions should have been answered 30 years ago when modern neonatology embarked on a journey from where it could not return. A new breed of physician, called seduced by the high-tech lure and the promise of saving lives previously unsavable pioneered a lucrative and life-saving technological revolution in the care of premature newborns. This rapid advancement in neonatology occurred a few years after the death of a premature infant named Patrick Kennedy in 1963. While the country mourned, medical scientists vowed that this would not happen again. First continuous positive airway pressure, then mechanical ventilation, changed medical care of premature newborns forever. It began an era of euphoria and excitement. Neonatologists raced to push to the edge of newborn viability. What was the youngest salvageable gestational age? What was the smallest that could be saved? Yes, we dreamed, and still do dream of artificial placentas. Ethical questions took a back seat in the search for the edge because the waters were uncharted and the tough questions could not be answered without experience. WhatwastobethecostindollarsandinanguishtosavethePatrickKennedysoftheworld?Triumphsledtograveconcerns asweapproachedtheedge.However,noadvancementinneonatologyhaseverchangedtheultimatequestions. (shrink)