Frequency and Severity of Moral Distress in Nephrology Fellows: A National Survey.

INTRODUCTION: Moral distress is a negative affective response to a situation in which one is compelled to act in a way that conflicts with one's values. Little is known about the workplace scenarios that elicit moral distress in nephrology fellows. METHODS: We sent a moral distress survey to 148 nephrology fellowship directors with a request to forward it to their fellows. Using a 5-point (0-4) scale, fellows rated both the frequency (never to very frequently) and severity (not at all disturbing to very disturbing) of commonly encountered workplace scenarios. Ratings of ≥3 were used to define "frequent" and "moderate-to-severe" moral distress. RESULTS: The survey was forwarded by 64 fellowship directors to 386 fellows, 142 of whom (37%) responded. Their mean age was 33 ± 3.6 years and 43% were female. The scenarios that most commonly elicited moderate to severe moral distress were initiating dialysis in situations that the fellow considered futile (77%), continuing dialysis in a hopelessly ill patient (81%) and carrying a high patient census (75%), and observing other providers giving overly optimistic descriptions of the benefits of dialysis (64%). Approximately 27% had considered quitting fellowship during training, including 9% at the time of survey completion. CONCLUSION: A substantial majority of nephrology trainees experienced moral distress of moderate to severe intensity, mainly related to the futile treatment of hopelessly ill patients. Efforts to reduce moral distress in trainees are required.

'Luckily, I don't believe in statistics': survey of women's understanding of chance of success with futile fertility treatments.

RESEARCH QUESTION: Why are women who face poor prognoses for success in assisted reproductive technology (ART) treatment choosing to pursue procedures using their own eggs, despite receiving information that their chances of success are very low. DESIGN: Cross-sectional study based on an anonymous questionnaire distributed to women aged between 43 and 45 years, undergoing ART using their own oocytes, at six public outpatient fertility clinics and three public in-hospital IVF units in Israel between 2015 and 2016. The main outcome measure was personal estimation of chance to achieve a live birth after the current ART treatment cycle and the cumulative estimated rate after all the treatment cycles the patient intended to undergo. RESULTS: Response rate was 70.0%, with 91 participants of mean age 43.8 ± 0.7 years. Participants estimated their delivery rates after the next ART treatment cycle at 49.0 ± 31.8% (response rate 93.4%) and their cumulative delivery rates after all the ART treatments they would undergo at 57.7 ± 36.3% (response rate 90.1%). This is significantly higher than the predicted success rates of 5% and 15%, respectively (both P < 0.001), which are based on national register data. Nearly one-half of patients rated themselves as having a better than average chance of conception (47.3%). CONCLUSION: Women do not pursue futile treatments because they lack information. Despite being informed of the low success rates of conception using ART treatments, many patients of advanced maternal age have unrealistically high expectations from ART, essentially ignoring their estimated prognosis when deciding on treatment continuation. Future work should examine the psychological reasons behind continuing futile fertility treatments.

Disagreement About Surgical Intervention in Trisomy 18.

In this case, we explore physician conflict with performing surgery (tracheostomy) for long-term ventilation in a term infant with trisomy 18 and respiratory failure. Experts in neonatal-perinatal medicine, pediatric bioethics, and pediatric palliative care have provided comments on this case. An additional commentary was written by the parent of another infant with trisomy 18, who is also a medical provider (physical therapist).

Perceptions of Futility in Interventional Radiology: A Multipractice Systematic Qualitative Analysis.

PURPOSE: To characterize perceptions of palliative versus futile care in interventional radiology (IR) as a roadmap for quality improvement. METHODS: Interventional radiologists (IRs) and referring physicians were recruited for anonymous interviews and/or focus groups to discuss their perceptions and experiences related to palliative verse futile care in IR. Sessions were recorded, transcribed, and systematically analyzed using dedicated software, content analysis, and grounded theory. Data collection and analysis continued simultaneously until additional interviews stopped revealing new themes: 24 IRs (21 males, 3 females, 1-39 years of experience) and 7 referring physicians (3 males, 4 females, 6-14 years of experience) were analyzed. RESULTS: Many IRs (75%) perceived futility as an important issue. Years of experience (r = 0.60, p = 0.03) and being in academics (r = 0.62, p = 0.04) correlated with greater perceived importance. Perceptions of futility and whether a potentially inappropriate procedure was performed involved a balance between four sets of factors (patient, clinician, procedural, and cultural). These assessments tended to be qualitative in nature and are challenged by a lack of data, education, and consistent workflows. Referring clinicians were unaware of this issue and assumed IR had guidelines for differentiating between palliation and futility. CONCLUSION: This study characterized the complexity and qualitative nature of assessments of palliative verses futile care in IR while highlighting potential means of improving current practices. This is important given the number of critically ill patients referred to IR and costs of potentially inappropriate interventions.

An alternative approach to developing guidelines for the management of an anticipated extremely preterm infant.

Objectives To identify the probability of survival and severe neurodevelopmental impairment (sNDI) at which perinatal physicians would or would not offer or recommend resuscitation at birth for extremely preterm infants. Methods A Delphi process consisting of five rounds was implemented to seek consensus (>80% agreement) amongst British Columbia perinatal physicians. The first-round consisted of neonatal and maternal-fetal-medicine Focus Groups. Rounds two to five surveyed perinatal physicians, building upon previous rounds. Draft guidelines were developed and agreement sought. Results Based on 401 responses across all rounds, consensus was obtained that resuscitation should not be offered if survival probability <5%, not recommended if survival probability 5 to <10%, resuscitation recommended if survival without sNDI probability >70 to 90% and resuscitation standard care if survival without sNDI >90%. Conclusions This physician consensus-based, objective framework for the management of an anticipated extremely preterm infant is a transparent alternative to existing guidelines, minimizing gestational-ageism and allowing for individualized management utilizing up-to-date data. Further input from other key stakeholders will be required prior to guideline implementation.

Conceptually Redefining Neonatal Palliative Care.

BACKGROUND: First defined in 2002 by Catlin and Carter, neonatal palliative care (NPC) is a relatively new model of care in neonatal pediatrics, first appearing in the medical literature in the early 1980s. PURPOSE: The purpose of this article is to suggest a conceptual definition of NPC that encompasses all the essential concepts as a way of moving NPC forward by having a consistent approach. METHODS: Following a review of the NPC literature, a thematic analysis as a method for identifying, analyzing, and interpreting patterns of meaning in the definitions ("themes") within the literature was undertaken. FINDINGS: The major themes identified included philosophies of care, support, culture and spirituality, the team, and clinical management. IMPLICATIONS FOR RESEARCH: At the heart of NPC is the primacy of maintaining quality of life, while providing ethical and humane care that supports a "good death." The extensive elements presented in this article are considered essential to a comprehensive and conceptual definition of NPC proposed here.

'Socialised care futility' in the care of older people in hospital who call out repetitively: An ethnographic study.

BACKGROUND: People living with dementia may call out repetitively, sometimes called disruptive vocalisation, or verbal agitation. In literature and policy, patients who call out repetitively are assumed to be expressing an unmet need, which should be met. Yet there has been little systematic study of this patient group in an acute hospital setting. OBJECTIVES: To better understand patients who call out repetitively and to identify what care looks like in an acute hospital setting. DESIGN: Ethnography. SETTINGS: Ten acute geriatric medical wards in two hospitals. PARTICIPANTS: 30 cognitively impaired patients who were calling out repetitively, and 15 members of hospital staff. METHODS: Semi-structured interviews with hospital staff, 150 h of ward observations and informal conversations with staff, scrutiny of medical and nursing documentation, and measures of patient health status. RESULTS: Patients who called out were moderately or severely cognitively impaired, often had delirium, were very physically disabled, and many were approaching the end of life. Most hospital staff were found to hold contradictory views: that calling out represents distress or unmet need, but that nothing can be done to alleviate the calling out. During informal conversations, most staff also tended to say that they intuitively recognised when intervening was likely to alleviate calling out. During observations, many staff appeared to and spoke of the ability to 'block' calling out. As a result we argue that social, emotional and physical needs may get overlooked. We argue that some calling out is due to a need that is unmeetable. We also found that while staff would talk about strategies for identifying need, observations and hospital documentation did not support evidence of systematic attempts to identify potential need. CONCLUSION: Calling out repetitively within a hospital setting is difficult for staff to understand and to respond to. This is because many of these patients are severely cognitively impaired, often immobile and dependent on their professional carers. We argue that a form of socialised care futility is communicated between staff and is used to rationalise becoming unresponsive to calling-out. We explain this phenomenon as resulting from two protective mechanisms: defence of staff's professional identity as competent practitioners; and defence of staff as having personal morality. Socialised care futility risks good quality care, therefore systematic strategies to assess and manage possible need should be developed, even if calling out remains irresolvable in some cases.

Can a Parent Refuse the Brain Death Examination?

The American Academy of Neurology believes that doctors have the right to do tests to evaluate whether a patient is brain dead even if the family does not consent. They argue that physicians have "both the moral authority and professional responsibility" to do such evaluations, just as they have the authority and responsibility to declare someone dead by circulatory criteria. Not everyone agrees. Truog and Tasker argue that apnea testing to confirm brain death has risks and that, for some families, those risks may outweigh the benefits. So, what should doctors do when caring for a patient whom they believe to be brain dead but whose parents refuse to allow testing to confirm that the patient meets neurologic criteria for death? In this article, we analyze the issues that arise when parents refuse such testing.

When Does Treatment in Cancer Care Become Futile?

Futility in medicine has been defined as excessive medical intervention with very little prospect of altering the clinical outcome in a positive manner. If treatments fail to release our patients from the preoccupation with the illness and do not allow them to pursue their life goals, then perhaps that treatment is futile.

Death without distress? The taboo of suffering in palliative care.

Palliative care (PC) 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 (PAS), 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.

Perception of Provision of Futile Care Among Clinicians in the Neuroscience Intensive Care Unit.

BACKGROUND: Futile care in the neuroscience intensive care unit (NSICU) can create moral distress for clinicians who may differ in their interpretation of the value of such care. We sought to compare the perception of provision of futile care in the NSICU among physicians, advanced practice providers, and intensive care unit registered nurses (ICURNs). METHODS: This is a cross-sectional study of 77 patients. A standardized questionnaire was used to ask clinicians whether care being provided to NSICU patients admitted for more than 48 hours was futile and whether they would want that treatment for their loved one. Demographics, diagnosis, and reason for treatment futility were collected. Futility was analyzed independently and in an aggregate manner (yes/probable combined and no/probable combined). RESULTS: The sample median age was 61 (SD, 17.179) years, men comprised 53% of the sample, and 68% were white. Collectively, there were 77 futile responses (33%), 136 nonfutile (59%), and 18 probable futile (8%). Physicians and nurse practitioners deemed futility in 36% of patients; ICURNs, in 27% (P < .05). Age, race, or diagnosis did not impact futility perception. The treatment was acceptable for a loved one in 53% of cases for physicians, 43% for advanced practice providers, and 48% for ICURNs (P < .05). Interobserver agreement for futility was 0.469 (CK), and pairwise agreement was 71%. Interobserver agreement for treatment acceptable for a loved one was 0.568 (CK), and pairwise agreement was 78%. CONCLUSIONS: Clinicians consider NSICU care futile in one-third of patients, but correlation among them is moderate; no specific variable is associated with such perception.

Neonatal organ donation: Ethical insights and policy implications.

In the realm of clinical ethics as well as in health policy and organizational ethics, the onus of our work as ethicists is to optimize the medical care and experience of the patient to better target ethical dilemmas that develop in the course of care delivery. The role of ethics is critical in all aspects of medicine, but particularly so in the difficult and often challenging cases that arise in the care of pregnant women and newborns. One exemplary situation is that when a pregnant woman and her partner consider neonatal organ donation after receiving news of a terminal diagnosis and expected death of the newborn. While a newer, less practiced form of organ donation, this approach is gaining greater visibility as an option for parents facing this terminal outcome. The aim of our paper is to highlight some of the key ethical issues associated with neonatal organ donation and identify clinical and logistical aspects of implementing such an approach to facilitate organ donation.

Parents' experiences of requests for organ and tissue donation: the value of asking.

OBJECTIVE: A proportion of children die, making them potentially eligible to be organ/tissue donors. Not all are approached for donation, and experiences of those parents are not well understood. The objective was to investigate to what extent organ and tissue donation (OTD) is discussed as part of end-of-life care and to explore parents' and healthcare professionals' (HCPs) experiences. DESIGN: A retrospective qualitative study. SETTING: Multicentre study with participants recruited through two neonatal intensive care units (ICUs), two paediatric ICUs, a cardiac ICU and a children's hospice. PATIENTS: Bereaved parents, parents of a child with a long-term condition (LTC) and HCPs. INTERVENTIONS: None. MAIN OUTCOMES AND MEASURES: Parents' and HCPs' views and experiences of discussions about OTD. RESULTS: 24 parents of 20 children were interviewed: 21 bereaved parents and 3 parents of a child with a LTC. Seven parents were asked about donation (13 not asked), four agreed and two donated. 41 HCPs were interviewed. Themes: complexity of donation process, OTD as a coping strategy, the importance of asking, difficulty of raising the topic,\ and parents' assumptions about health of organs (when donation is not discussed). CONCLUSIONS: The findings add new knowledge about parents' assumptions about the value of their child's organs when discussions about OTD are not raised, and that HCPs do not routinely ask, are sometimes hesitant to ask in fear of damaging relationships, and the reality of the complexity of the donation process. Given the current levels of awareness around OTD, the topic should be raised.

Fast and slow thinking; and the problem of conflating clinical reasoning and ethical deliberation in acute decision-making.

Expertise in a medical specialty requires countless hours of learning and practice and a combination of neural plasticity and contextual case experience resulting in advanced gestalt clinical reasoning. This holistic thinking assimilates complex segmented information and is advantageous for timely clinical decision-making in the emergency department and paediatric or neonatal intensive care units. However, the same agile reasoning that is essential acutely may be at odds with the slow deliberative thought required for ethical reasoning and weighing the probability of patient morbidity. Recent studies suggest that inadequate ethical decision-making results in increased morbidity for patients and that clinical ethics consultation may reduce the inappropriate use of life-sustaining treatment. Behavioural psychology research suggests there are two systems of thinking - fast and slow - that control our thoughts and therefore our actions. The problem for experienced clinicians is that fast thinking, which is instinctual and reflexive, is particularly vulnerable to experiential biases or assumptions. While it has significant utility for clinical reasoning when timely life and death decisions are crucial, I contend it may simultaneously undermine the deliberative slow thought required for ethical reasoning to determine appropriate therapeutic interventions that reduce future patient morbidity. Whilst health-care providers generally make excellent therapeutic choices leading to good outcomes, a type of substitutive thinking that conflates clinical reasoning and ethical deliberation in acute decision-making may impinge on therapeutic relationships, have adverse effects on patient outcomes and inflict lifelong burdens on some children and their families.

Clinicians' Perceptions of Futile or Potentially Inappropriate Care and Associations with Avoidant Behaviors and Burnout.

Background: Futile or potentially inappropriate care (futile/PIC) for dying inpatients leads to negative outcomes for patients and clinicians. In the setting of rising end-of-life health care costs and increasing physician burnout, it is important to understand the causes of futile/PIC, how it impacts on care and relates to burnout. Objectives: Examine causes of futile/PIC, determine whether clinicians report compensatory or avoidant behaviors as a result of such care and assess whether these behaviors are associated with burnout. Design: Online, cross-sectional questionnaire. Setting/Subjects: Clinicians at two academic hospitals in New York City. Methods: Respondents were asked the frequency with which they observed or provided futile/PIC and whether they demonstrated compensatory or avoidant behaviors as a result. A validated screen was used to assess burnout. Measurements: Descriptive statistics, odds ratios, linear regressions. Results: Surveys were completed by 349 subjects. A majority of clinicians (91.3%) felt they had provided or "possibly" provided futile/PIC in the past six months. The most frequent reason cited for PIC (61.0%) was the insistence of the patient's family. Both witnessing and providing PIC were statistically significantly (p < 0.05) associated with compensatory and avoidant behaviors, but more strongly associated with avoidant behaviors. Provision of PIC increased the likelihood of avoiding the patient's loved ones by a factor of 2.40 (1.82-3.19), avoiding the patient by a factor of 1.83 (1.32-2.55), and avoiding colleagues by a factor of 2.56 (1.57-4.20) (all p < 0.001). Avoiding the patient's loved ones (ß = 0.55, SE = 0.12, p < 0.001), avoiding the patient (ß = 0.38, SE = 0.17; p = 0.03), and avoiding colleagues (ß = 0.78, SE = 0.28; p = 0.01) were significantly associated with burnout. Conclusions: Futile/PIC, provided or observed, is associated with avoidance of patients, families, and colleagues and those behaviors are associated with burnout.

Explaining the Process of Determining Futility Increases Lay Public Acceptance.

Rationale: National guidelines have laid out a process to conflict resolution in cases of potentially inappropriate medical interventions. Objectives: To determine the association between information about a process-based approach and lay public perceptions of the appropriateness of withholding medically inappropriate interventions. Methods: Respondents from a nationwide sample completed a survey with two adult intensive care unit-based vignettes: one about advanced cancer where doctors told the family that additional chemotherapy would not be offered, and a second case of multiorgan failure after brain hemorrhage where dialysis would not be offered. Participants were randomly assigned to see or not see information about a detailed process for the determination to withhold (second opinion, ethics consultation, exploring transfer to another institution). The primary outcome was the perceived appropriateness of not providing the treatment (four-point scale, dichotomized for analysis, modified Poisson regression), and the secondary outcome was the negative emotional reaction to the case (positive and negative affect schedule, range 1-5, higher is greater negative emotional response, linear regression). Results: A total of 1,191 respondents were included. Providing detailed process information increased the perceived appropriateness of withholding treatment by approximately 10 percentage points in each vignette: (chemotherapy, 75.7-85.4%; dialysis, 68.0-79.3%). Process information remained associated with perceived appropriateness of withholding treatment after adjustment for order effects and prespecified respondent characteristics (chemotherapy: prevalence ratio, 1.13; 95% confidence interval [CI], 1.07-1.19) (dialysis: prevalence ratio, 1.17; 95% CI, 1.10-1.25). Process information was not associated with emotional response to the cases (chemotherapy: ß = -0.04; 95% CI, -0.16 to 0.09) (dialysis: ß = -0.02; 95% CI, -0.14 to 0.10; both adjusted for order effects). Conclusions: Providing process-based conflict resolution information increased public acceptance of determinations of medical futility, supporting the practice outlined in national consensus statements.