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).

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.

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.

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.

Association of Perceived Futile or Potentially Inappropriate Care With Burnout and Thoughts of Quitting Among Health-Care Providers.

BACKGROUND: Futile or potentially inappropriate care (futile/PIC) has been suggested as a factor contributing to clinician well-being; however, little is known about this association. OBJECTIVE: To determine whether futile/PIC provision is associated with measures of clinician well-being. DESIGN: Cross-sectional, self-administered, online questionnaire. SETTING: Two New York City Hospitals. PARTICIPANTS: Attending physicians, residents, nurses, and physician assistants in the fields of internal medicine, surgery, neurology, or intensive care. EXPOSURE(S): Provision of perceived futile/PIC. MEASUREMENTS: Main outcomes included (1) clinician burnout, measured using the Physician Worklife Study screen; (2) clinician depression, measured using the Patient Health Questionnaire; and (3) intention to quit, measured using questions assessing thoughts of quitting and how seriously it is being considered. RESULTS: Of 1784 clinicians who received surveys, 349 participated. Across all clinicians, 91% reported that they either had or had possibly provided futile/PIC to a patient. Overall, 43.4% of clinicians screened positive for burnout syndrome, 7.8% screened positive for depression, and 35.5% reported thoughts of leaving their job as a result of futile/PIC. The amount of perceived futile/PIC provided was associated with burnout (odds ratio [OR] 3.8 [16-30 patients vs 1-2 patients]; 95% confidence interval [CI]: 1.1-12.8) and having thoughts of quitting (OR, 7.4 [16-30 patients vs 1-2 patients]; 95% CI: 2.0-27), independent of depression, position, department, and the number of dying patients cared for. CONCLUSIONS: A large majority of clinicians report providing futile/PIC, and such care is associated with measures of clinician well-being, including burnout and intention to quit.

When a Child Dies in the PICU Despite Ongoing Life Support.

OBJECTIVES: To examine the circumstance of death in the PICU in the setting of ongoing curative or life-prolonging goals. DATA SOURCES: Multidisciplinary author group, international expert opinion, and use of current literature. DATA SYNTHESIS: We describe three common clinical scenarios when curative or life-prolonging goals of care are pursued despite a high likelihood of death. We explore the challenges to providing high-quality end-of-life care in this setting. We describe possible perspectives of families and ICU clinicians facing these circumstances to aid in our understanding of these complex deaths. Finally, we offer suggestions of how PICU clinicians might improve the care of children at the end of life in this setting. CONCLUSIONS: Merging curative interventions and optimal end-of-life care is possible, important, and can be enabled when clinicians use creativity, explore possibilities, remain open minded, and maintain flexibility in the provision of critical care medicine. When faced with real and perceived barriers in providing optimal end-of-life care, particularly when curative goals of care are prioritized despite a very poor prognosis, tensions and conflict may arise. Through an intentional exploration of self and others' perspectives, values, and goals, and working toward finding commonality in order to align with each other, conflict in end-of-life care may lessen, allowing the central focus to remain on providing optimal support for the dying child and their family.

Assessing Statewide All-Cause Future One-Year Mortality: Prospective Study With Implications for Quality of Life, Resource Utilization, and Medical Futility.

BACKGROUND: For many elderly patients, a disproportionate amount of health care resources and expenditures is spent during the last year of life, despite the discomfort and reduced quality of life associated with many aggressive medical approaches. However, few prognostic tools have focused on predicting all-cause 1-year mortality among elderly patients at a statewide level, an issue that has implications for improving quality of life while distributing scarce resources fairly. OBJECTIVE: Using data from a statewide elderly population (aged ≥65 years), we sought to prospectively validate an algorithm to identify patients at risk for dying in the next year for the purpose of minimizing decision uncertainty, improving quality of life, and reducing futile treatment. METHODS: Analysis was performed using electronic medical records from the Health Information Exchange in the state of Maine, which covered records of nearly 95% of the statewide population. The model was developed from 125,896 patients aged at least 65 years who were discharged from any care facility in the Health Information Exchange network from September 5, 2013, to September 4, 2015. Validation was conducted using 153,199 patients with same inclusion and exclusion criteria from September 5, 2014, to September 4, 2016. Patients were stratified into risk groups. The association between all-cause 1-year mortality and risk factors was screened by chi-squared test and manually reviewed by 2 clinicians. We calculated risk scores for individual patients using a gradient tree-based boost algorithm, which measured the probability of mortality within the next year based on the preceding 1-year clinical profile. RESULTS: The development sample included 125,896 patients (72,572 women, 57.64%; mean 74.2 [SD 7.7] years). The final validation cohort included 153,199 patients (88,177 women, 57.56%; mean 74.3 [SD 7.8] years). The c-statistic for discrimination was 0.96 (95% CI 0.93-0.98) in the development group and 0.91 (95% CI 0.90-0.94) in the validation cohort. The mortality was 0.99% in the low-risk group, 16.75% in the intermediate-risk group, and 72.12% in the high-risk group. A total of 99 independent risk factors (n=99) for mortality were identified (reported as odds ratios; 95% CI). Age was on the top of list (1.41; 1.06-1.48); congestive heart failure (20.90; 15.41-28.08) and different tumor sites were also recognized as driving risk factors, such as cancer of the ovaries (14.42; 2.24-53.04), colon (14.07; 10.08-19.08), and stomach (13.64; 3.26-86.57). Disparities were also found in patients' social determinants like respiratory hazard index (1.24; 0.92-1.40) and unemployment rate (1.18; 0.98-1.24). Among high-risk patients who expired in our dataset, cerebrovascular accident, amputation, and type 1 diabetes were the top 3 diseases in terms of average cost in the last year of life. CONCLUSIONS: Our study prospectively validated an accurate 1-year risk prediction model and stratification for the elderly population (≥65 years) at risk of mortality with statewide electronic medical record datasets. It should be a valuable adjunct for helping patients to make better quality-of-life choices and alerting care givers to target high-risk elderly for appropriate care and discussions, thus cutting back on futile treatment.

Decision-making on therapeutic futility in Mexican adolescents with cancer: a qualitative study.

BACKGROUND: The world literature shows that empirical research regarding the process of decision-making when cancer in adolescents is no longer curable has been conducted in High-income, English speaking countries. The objective of the current study was to explore in-depth and to explain the decision-making process from the perspective of Mexican oncologists, parents, and affected adolescents and to identify the ethical principles that guide such decision-making. METHODS: Purposive, qualitative design based on individual, fact-to-face, semi-structured, in-depth interviews. The participants were thirteen paediatric oncologists, 13 parents or primary carers, and six adolescents with incurable cancer. The participants were recruited from the paediatric oncology services of three national tertiary-care medical centres in Mexico City. RESULTS: The oncologists stated that they broach the subject of palliative management when they have determined that curative treatment has failed. Respect for autonomy was understood as the assent of the parent/adolescent to what the oncologist determined to be in the best interest of the adolescent. The oncologists thought that the adolescent should be involved in the decision-making. They also identified the ability to count on a palliative care clinic or service as an urgent need. For the parents, it was essential that the oncologist be truly interested in their adolescent child. The parents did not consider it necessary to inform the child about impending death. The adolescents stated that the honesty of their oncologists was important; however, several of them opted for a passive role in the decision-making process. CONCLUSION: The findings of this study evidence that to achieve good medical practice in low-middle income countries, like Mexico, it is urgent to begin effective implementation of palliative care, together with appropriate training and continuing education in the ethics of clinical practice.

Patient-satisfaction surveys on a scale of 0 to 10: improving health care, or leading it astray?

Patient-satisfaction surveys can call attention to the importance of treating patients with dignity and respect, but good ratings depend more on manipulable patient perceptions than on good medicine. In fact, the pressure to get good ratings can lead to bad medicine.

[When should palliative care for children with life-threatening illnesses begin?]. / Wann sollte Palliative Care bei Kindern mit lebenslimitierenden Erkrankungen beginnen?

Paediatric Palliative Care in Switzerland is still in its infancy. In comparison to palliative care in adults, the knowledge about palliative care in children is limited. To facilitate the decision of when to start palliative care, an instrument for health professionals has been developed. The instrument, called Paediatric Palliative Screening Scale (PaPaS Scale), builds on five domains shedding light on the child's illness: 1) trajectory of disease and impact on daily activities; 2) treatment options and burden of treatment; 3) symptoms, controllability, and problem burden; 4) preferences of patient or parents; and 5) life expectancy. The aims of a reasonably starting palliative care are quality of life and the ability to actively create the rest of life.

Les soins palliatifs chez les enfants ne sont pas encore beaucoup développés en Suisse et en comparaison des soins palliatifs chez l'adulte les connaissances dans ce domaine sont limitées. Pour mettre en route des soins palliatifs de manière justifiée au bon moment, un outil a été développé pour aider les professionnels à prendre des décisions qui sont difficiles. Cet outil, connu sous l'appellation de Paediatric Palliative Screening Scale (PaPaS Scale) se base sur cinq domaines importants à prendre en compte chez l'enfant malade: 1) les effets de la maladie sur le quotidien de l'enfant; 2) les possibilités thérapeutiques et l'importance de la charge induite par la thérapie; 3) les symptômes et la possibilité de les contrôler; 4) les souhaits du malade et de ses parents; 5) l'espérance de vie. Le but de la mise en route de soins palliatifs au bon moment est d'offrir la meilleure qualité de vie et condition de santé pour le temps qui reste à vivre.

New approaches with surrogate decision makers.

A first principle in ethics consultation is that reasoning is essential. A second principle is that the religious and cultural views of patients and their surrogates are usually respected. What can be done when these principles collide-when patients or surrogates have religious or cultural views and beliefs that clinicians find unreasonable or even offensive? Mediation may provide some approaches to assist us in providing the most ethically appropriate assistance.

Futile care; concept analysis based on a hybrid model.

BACKGROUND: Making decision about what kind of caring is entitled as futile care requires the presentation of a clear definition of such caretaking. OBJECTIVE: To report an analysis of the concept of futile care. DESIGN: The analysis in this research was carried out through hybrid model in three stages. At the theoretical stage:  a review of the available literature. At the work-in-field stage: semi-structured interviews. SETTING: Data collection was on cancer unit and palliative care unit. PARTICIPANTS: A total of 7 participants were recruited in the study. The inclusion criteria were: having at least a bachelor's degree in nursing, having at least 5 years of experience in critical care or cancer units, and being willing to participate in the study. RESULTS: Three themes emerged: "low quality of life", "lack physiologic return to life" and "performing non-professional duties". CONCLUSION: Futile care consists giving clinical cares irrelevant to a nurse's job and giving cares through which the return of patient would be impossible both physiologically and qualitatively.

[The significance of quality of life--an ethical approach]. / Die Bedeutung von Lebensqualität--aus ethischer Perspektive.

Quality of life is highly appreciated as an evaluation criterion and a goal of interventions in medicine, but it is insufficiently applied. There is no unanimous definition of "quality of life". From a philosophical point of view, subjectivistic concepts can be differentiated from objectivistic ones. In medicine there are the three concepts of general, health-related and disease-specific quality of life. In this paper it is argued that a general and subjectivistic account of quality of life is of prevailing ethical significance, due to patient orientation and patient autonomy reasons. The normative function of quality of life should be given much more consideration by the responsible players in clinical research, healthcare and allocation decisions within the healthcare system.