La relation médecin-patient qui fonde la prise en charge médicale depuis l’antiquité a été modifiée par les progrès scientifiques des 30 dernières années et par les lois du début du 21e siècle qui ont rendu son autonomie au patient. Notre réflexion a été suscitée par un cas clinique de prise en charge palliative en cancérologie, où semblent s’opposer connaissances médicales et intuition. Nous chercherons à comprendre comment données scientifiques, intuition et expérience permettent d’adapter le jugement médical à la singularité de chaque patient.
Introduction: La nutrition artificielle en fin de vie est un sujet complexe. Elle amène souvent de nombreux questionnements, car elle est liée à de nombreux symboles se rapportant à la société, l’éthique, les soins et bien d’autres.
Matériel et méthode: Il s’agit d’une étude de cas autour d’une situation complexe de nutrition artificielle chez un adulte atteint de trisomie 21 dans un contexte palliatif.
Résultats: La décision d’entreprendre ou non une nutrition artificielle ne relève pas, dans ces situations complexes, d’une certitude médicale. Tous les acteurs soignants et non soignants de la prise en charge doivent alors interagir de façon à définir la solution la moins délétère pour le patient, car très souvent il existe des arguments pour et contre la nutrition. La souffrance et les représentations des proches sont également des éléments impératifs à prendre en compte et un accompagnement tout au long du processus décisionnel doit être réalisé.
Conclusion: La décision finale de nutrition artificielle en situation complexe doit être prise au terme d’une réflexion incluant tous les acteurs médicaux et non médicaux. Cette décision doit être expliquée à tous et un accompagnement adapté doit ensuite être proposé au patient et à ses proches ainsi qu’une réévaluation régulière des soins et du confort.
The right to the return of personal effects belonging to loved ones after sudden death requires both protection and promotion. It is a fragile ‘right’ that can easily be undermined, and may require support from policy and legislation. The author has championed the return of personal effects after bereavement throughout her career in disaster response and was influenced by early examples of poor treatment and destruction. This article provides an evaluation of the historic picture and a reflection on the ongoing work to ensure that property is protected and restored. It also discusses whether the UK now has an ‘ethic of care’ in this area. This piece considers a number of recent case studies drawing on the author’s own experiences of working on incidents between 2001 and the present day, with specific examination of the work of the Metropolitan Police’s Property Restoration Team in 2005.
In 1900, most Americans gave birth and died at home, with minimal medical intervention. By contrast, most Americans today begin and end their lives in hospitals. The medicalization we now see is due in large part to federal and state policies that draw patients away from community-based providers, such as birth centers and hospice care, and toward the most intensive and costliest kinds of care. But the evidence suggests that birthing and dying people receive too much—even harmful—medical intervention.
In The Medicalization of Birth and Death, political scientist Lauren K. Hall describes how and why birth and death became medicalized events. While hospitalization provides certain benefits, she acknowledges, it also creates harms, limiting patient autonomy, driving up costs, and causing a cascade of interventions, many with serious side effects. Tracing the regulatory, legal, and financial policies that centralize care during birth and death, Hall argues that medicalization reduces competition, stifles innovation, and prevents individuals from accessing the most appropriate care during their most vulnerable moments. She also examines the profound implications of policy-enforced medicalization on informed consent and shows how medicalization challenges the healthcare community's most foundational ethical commitments.
[Extrait résumé éditeur]
This special issue contents : a report of physicians’ beliefs about physician-assisted suicide: a national study ; respecting autonomy and promoting the patient’s good in the setting of serious terminal and concurrent mental illness ; after-death functions of cell death; selective neuronal death in neurodegenerative diseases: the ongoing mystery ; practice variability in determination of death by neurologic criteria for adult patients ; mortal responsibilities: bioethics and medical-assisted dying ; anticipation, accompaniment, and a good death in perinatal care ; pros and cons of physician aid in dying ; brain death criteria: medical dogma and outliers ; dying well-informed: the need for better clinical education surrounding facilitating end-of-life conversations ; looking back at withdrawal of life-support law and policy to see what lies ahead for medical aid-in-dying.
Background: Clinicians at the bedside regularly encounter surprises or unexpected clinical developments that carry emotional, social, or moral overtones-especially when death is anticipated or when patients are particularly vulnerable. In such circumstances, clinicians may struggle to find practical clarity in making treatment plans that honor their fiduciary (literally, "entrusted") duty to uphold equitably the ethical principles of beneficence, nonmaleficence, patient autonomy, and justice.
Methods: We present the case of a patient who appeared to be actively dying and received an indwelling urinary catheter for the purpose of ensuring comfort. However, it led to an unintended reversal of renal failure and exacerbation of underlying psychiatric disease. This led to a meaningful change in the patient's prognosis. It also created pragmatic challenges to shared decision making, which required an intentional interdisciplinary approach to balancing beneficence and patient autonomy. Conclusion: Palliative Care offers a holistic clinical approach to complex suffering. Palliative care specialists develop advanced skill sets in prognosis estimation, nuanced communication issues, and patient-centered goal setting. As this case highlights, prognosis can shift dramatically in the perimortem period, even with small changes in care plans. This case presented several biomedical, social-cultural, and ethical challenges to the team. Lessons from the case are presented regarding: the role a specialist palliative team might play throughout all stages of serious illness; approaching prognostication as an iterative rather than solitary task; and utilizing an ethical framework to care planning when there are barriers to shared decision making.
Background: The ethical principle of justice demands that resources be distributed equally and based on evidence. Guidelines regarding forgoing of CPR are unavailable and there is large variance in the reported rates of attempted CPR in in-hospital cardiac arrest. The main objective of this work was to study whether local culture and physician preferences may affect spur-of-the-moment decisions in unexpected in-hospital cardiac arrest.
Methods: Cross sectional questionnaire survey conducted among a convenience sample of physicians that likely comprise code team members in their country (Indonesia, Israel and Mexico). The questionnaire included details regarding respondent demographics and training, personal value judgments and preferences as well as professional experience regarding CPR and forgoing of resuscitation.
Results: Of the 675 questionnaires distributed, 617 (91.4%) were completed and returned. Country of practice and level of knowledge about resuscitation were strongly associated with avoiding CPR performance. Mexican physicians were almost twicemore likely to forgo CPR than their Israeli and Indonesian/Malaysian counterparts [OR1.84 (95% CI 1.03, 3.26), p = 0.038]. Mexican responders also placed greater emphasison personal and patient quality of life (p < 0.001). In multivariate analysis, degree of religiosity was most strongly associated with willingness to forgo CPR; orthodox respondents were more than twice more likely to report having forgone CPR for apatient they do not know than secular and observant respondents, regardless of the country of practice [OR 2.12 (95%CI 1.30, 3.46), p = 0.003].
Conclusions: In unexpected in-hospital cardiac arrest the decision to perform or withhold CPR may be affected by physician knowledge and local culture as well as personal preferences. Physician CPR training should include information regarding predictors of patient outcome at as well as emphasis on differentiating between patient and personal preferences in an emergency.
OBJECTIVES: The purpose of this study was to analyze the decision-making process in emergency general surgery in an attempt to ascertain whether surgeons make the correct decision when decisions not to operate in high-risk acutely unwell surgical patients are taken.
BACKGROUND: A decision not to operate is sometimes associated with a certain degree of uncertainty as to the accuracy of the decision. Difficulty lies with the fact that the decisions are made on assumptions, and the tools available are not fool proof.
METHODS: We retrospectively evaluated "decisions not to operate" over a period of 32 months from April 2013 to August 2015 in a district general hospital in United Kingdom and compared with consecutive similar number of patients who had an operation as recorded in the National Emergency Laparotomy Audit (NELA) database (from January 2014 to August 2015). We looked at the demographics, American Society of Anesthesiologists grade, Portsmouth-Physiological and Operative Severity Score for enumeration of Mortality and Morbidity (P-POSSUM) score, functional status, and 30-day mortality.
RESULTS: Two groups (operated [n = 43] and conservative [n = 42]) had similar characteristics. Patients for conservative management had a higher P-POSSUM score (P < .001) and a poorer functional status (P < .001) at the time of decision-making compared to those who had surgery. Mortality at 30 days was significantly higher for patients decided for conservative management when compared with those who had surgery (76.2% and 18.6%, respectively).
CONCLUSIONS: Elderly patients with poorer functional status and predicted risks more often drive multidisciplinary discussions on whether to operate. Within the limitations of not knowing the outcome otherwise, it appears surgeons take a reasonable approach when deciding not to operate.
OBJECTIVE: To describe the current status of withholding or withdrawal of life-sustaining interventions (LSI) for neonates in Japan and to identify physician- and institutional-related factors that may affect advance care planning (ACP) practices with parents.
STUDY DESIGN: A self-reported questionnaire was administered to assess frequency of withholding and withdrawing intensive care at the respondent's facility, the physician's degree of affirming various beliefs about end-of-life care that was compared to 7 European countries, their self-reported ACP practices and perceived barriers to ACP. Three neonatologists at all 298 facilities accredited by the Japan Society for Neonatal Health and Development were surveyed, with 572 neonatologists at 217 facilities responding.
RESULTS: At 76% of facilities, withdrawing intensive care treatments was "never" done, while withholding intensive care had been done "sometimes" or more frequently at 82% of facilities. Japanese neonatologists differed from European neonatologists regarding their degree of affirmation of 3 out of 7 queried beliefs about end-of-life care. In hospitals that were more likely to "sometimes" (or more often) withdraw treatments, respondents were less likely to affirm beliefs about doing "everything possible" or providing the "maximum of intensive care". Self-reported ACP practices did not vary between neonatologists based on their hospital's overall pattern of withholding or withdrawing treatments.
CONCLUSION: Among NICU facilities in Japan, 21% had been sometimes withdrawing LSI and 82% had been "sometimes" withholding LSI. Institutional treatment practices may have a strong association with physicians' beliefs that then affect end-of-life discussions, but not with self-reported ACP practices.
OBJECTIVES: To determine the prevalence of clinician perception of inappropriate cardiopulmonary resuscitation (CPR) regarding the last out--of-hospital cardiac arrest (OHCA) encountered in an adult 80 years or older and its relationship to patient outcome.
DESIGN: Subanalysis of an international multicenter cross-sectional survey (REAPPROPRIATE).
SETTING: Out-of-hospital CPR attempts registered in Europe, Israel, Japan, and the United States in adults 80 years or older.
PARTICIPANTS: A total of 611 clinicians of whom 176 (28.8%) were doctors, 123 (20.1%) were nurses, and 312 (51.1%) were emergency medical technicians/paramedics.
RESULTS AND MEASUREMENTS: The last CPR attempt among patients 80 years or older was perceived as appropriate by 320 (52.4%) of the clinicians; 178 (29.1%) were uncertain about the appropriateness, and 113 (18.5%) perceived the CPR attempt as inappropriate. The survival to hospital discharge for the “appropriate” subgroup was 8 of 265 (3.0%), 1 of 164 (.6%) in the “uncertain” subgroup, and 2 of 107 (1.9%) in the “inappropriate” subgroup (P = .23); 503 of 564 (89.2%) CPR attempts involved non-shockable rhythms.
CPR attempts in nursing homes accounted for 124 of 590 (21.0%) of the patients and were perceived as appropriate by 44 (35.5%) of the clinicians; 45 (36.3%) were uncertain about the appropriateness; and 35 (28.2%) perceived the CPR attempt as inappropriate. The survival to hospital discharge for the nursing home patients was 0 of 107 (0%); 104 of 111 (93.7%) CPR attempts involved non-shockable rhythms.
verall, 36 of 543 (6.6%) CPR attempts were undertaken despite a known written do not attempt resuscitation decision; 14 of 36 (38.9%) clinicians considered this appropriate, 9 of 36 (25.0%) were uncertain about its appropriateness, and 13 of 36 (36.1%) considered this inappropriate.
CONCLUSION: Our findings show that despite generally poor outcomes for older patients undergoing CPR, many emergency clinicians do not consider these attempts at resuscitation to be inappropriate. A professional and societal debate is urgently needed to ensure that first we do not harm older patients by futile CPR attempts.
Critics of organ donation after circulatory death (DCD) argue that, even if donors are past the point of autoresuscitation, they have not satisfied the "irreversibility" requirement in the circulatory and respiratory criteria for determining death, since their circulation and respiration could be artificially restored. Thus, removing their vital organs violates the "dead-donor" rule. I defend DCD donation against this criticism. I argue that practical medical-ethical considerations, including respect for do-not-resuscitate orders, support interpreting "irreversibility" to mean permanent cessation of circulation and respiration. Assuming a consciousness-related formulation of human death, I then argue that the loss of circulation and respiration is significant, because it leads to the permanent loss of consciousness and thus to the death of the human person. The DNR request by an organ donor should thus be interpreted to mean "do not restore to consciousness." Finally, I respond to an objection that if "irreversibility" has a medical-ethical meaning, it would entail the absurd possibility that one of two individuals in the same physical state could be alive and the other dead-an implication that some think is inconsistent with understanding death as an objective biological state of the organism. I argue that advances in medical technology have created phenomena that challenge the assumption that human death can be understood in strictly biological terms. I argue that ethical and ontological considerations about our nature bear on the definition and determination of death and thus on the permissibility of DCD.
Conscientious objection has become a divisive topic in recent bioethics publications. Discussion has tended to frame the issue in terms of the rights of the healthcare professional versus the rights of the patient. However, a rights-based approach neglects the relational nature of conscience, and the impact that violating one's conscience has on the care one provides. Using medical assistance in dying as a case study, we suggest that what has been lacking in the discussion of conscientious objection thus far is a recognition and prioritising of the relational nature of ethical decision-making in healthcare and the negative consequences of moral distress that occur when healthcare professionals find themselves in situations in which they feel they cannot provide what they consider to be excellent care. We propose that policies that respect the relational conscience could benefit our healthcare institutions by minimising the negative impact of moral distress, improving communication among team members and fostering a culture of ethical awareness. Constructive responses to moral distress including relational cultivation of moral resilience are urged.
Physicians around the world are trained to promote health, detect and prevent diseases in early stages to avoid their progression and improve quality of life for patients when a disease has reached its advanced stages. However, when doctors face terminally ill patients who develop surgical emergencies due to complications of an underlying condition, it becomes a challenging, sensitive and ethical problem to decide between proceeding with aggressive surgical intervention or providing palliative care. The clinical case discussed here depicts one such situation and underlines the important role that an anesthesiologist fulfills during the final decision-making process.
OBJECTIVE: The objective of this paper is to explore the ethical and legal validity of advance directives that request the voluntary stopping of eating and drinking against a backdrop of late-stage dementia.
METHOD: Doctrinal research and analysis of primary and secondary materials including Australian legislation, Australian case law and journal articles was undertaken.
RESULTS: There is legal uncertainty in Australia around whether an advance directive to voluntarily stop eating and drinking will be followed should the adult become incompetent.
CONCLUSION: Voluntary stopping of eating and drinking should be viewed in law as a form of "treatment" that competent adults can nominate in advance directives, thereby providing dementia patients with the opportunity to choose in advance, if they wish, to end their life legally, with dignity and comfort, and in a manner that does not implicate others in criminal behaviour such as assisted suicide, acceleration of death or euthanasia.
While care is often either implicitly or explicitly conceived in terms of "doing good," the morality of care is more complex than this association would suggest. Nursing home care, in particular, is both characterized by institutional demands for regulation and standardization, and the subjective practices of care workers. These can represent different notions of good care. Based on ethnographic fieldwork among people with dementia, family members and professional caregivers in nursing homes in the Netherlands, I present a case of a resident's sudden death, which revealed a fallacy of care. A fallacy of care refers to an uncritical approach to the "good" in care that overlooks its potentially harmful outcomes. I show that recognizing such fallacies is not only a matter of recognizing the "bad" that may result from "good" care, but of the friction between multiple "goods." In this case, protocols and care practices advocate different notions of the good that coexist, compete, and exclude one another, producing moral distress and forming hierarchical, if contested relations.
The addition of a do-not-operate (DNO) section to current medical orders for life-sustaining treatment (MOLST) and physician orders for life-sustaining treatment (POLST) medical order forms would more completely document patients' wishes for invasive interventions at the end of life. We propose a modification of the MOLST and POLST forms, in addition to hospital and electronic medical records, to include a DNO section, in addition to preexisting do-not-resuscitate (DNR) and do-not-intubate (DNI) orders, with the goal of reducing suffering from nonbeneficial surgical interventions in patients with severe illness at the end of life.
BACKGROUND: Decisions of withholding or withdrawing life-sustaining treatment are frequent in emergency departments (ED) and patients are often unable to communicate their wishes concerning end of life desires.
OBJECTIVE: To evaluate the participation of general practitioners (GPs) during the decision-making process of withholding or withdrawing life-sustaining treatments in ED.
DESIGN: Prospective observational multicenter study.
PATIENTS: We included patients for whom a decision of withdrawing or withholding life-sustaining treatments was made in ED. For each patient, we enrolled one general practitioner.
MAIN MEASURES: GPs were interviewed about their perception of end of life patient's management and the communication with ED and families.
KEY RESULTS: There were 109 potential patient participants. We obtained answers from 54 (49.5%) of the patient's associated GPs. Only 4 (7.4%) GPs were involved during the decision-making process of withholding or withdrawing life-sustaining treatments. Among GPs, 29 (53.7%) were contacted by family after the decision, most often to talk about their difficult experience with the decision. A majority (94%) believed their involvements in these decisions were important and 68% wished to "always" participate in end of life decisions despite the fact that they usually don't participate in these decisions. Finally, 66% of GPs believed that management of end of life in the emergency department was a failure and should be anticipated.
CONCLUSIONS: GPs would like to be more involved and barriers to GP involvement need to be overcome. We do not have any outcome data to suggest that routine involvement of GPs in all end of life patients improves their outcomes. Moreover, it requires major system and process-based changes to involve all primary care physicians in ED decision-making.
NIH TRIAL REGISTRY NUMBER: NCT02844972.
Objective: To quantitatively assess the factors associated with non-beneficial treatments (NBTs) in hospital admissions at the end of life.
Design: Retrospective multicentre cohort study.
Setting Three large, metropolitan tertiary hospitals in Australia.
Participants: 831 adult patients who died as inpatients following admission to the study hospitals over a 6-month period in 2012.
Main outcome measures: Odds ratios (ORs) of NBT derived from logistic regression models.
Results: Overall, 103 (12.4%) admissions involved NBTs. Admissions that involved conflict within a patient’s family (OR 8.9, 95% CI 4.1 to 18.9) or conflict within the medical team (OR 6.5, 95% CI 2.4 to 17.8) had the strongest associations with NBTs in the all subsets regression model. A positive association was observed in older patients, with each 10-year increment in age increasing the likelihood of NBT by approximately 50% (OR 1.5, 95% CI 1.2 to 1.9). There was also a statistically significant hospital effect.
Conclusions: This paper presents the first statistical modelling results to assess the factors associated with NBT in hospital, beyond an intensive care setting. Our findings highlight potential areas for intervention to reduce the likelihood of NBTs.
BACKGROUND: Research has shown that do not resuscitate (DNR) and do not intubate (DNI) orders may be construed by physicians to be more restrictive than intended by patients. Previous studies of physicians found that DNR/DNI orders are associated with being less willing to provide invasive care.
OBJECTIVES: The purpose of this study was to assess the influence of code status on emergency residents' decision-making regarding offering invasive procedures for those patients with DNR/DNI compared with their full code counterparts.
METHODS: We conducted a nationwide survey of emergency medicine residents using an instrument of 4 clinical vignettes involving patients with serious illnesses. Two versions of the survey, survey A and survey B, alternated the DNR/DNI and full code status for the vignettes. Residency leaders were contacted in August 2018 to distribute the survey to their residents.
RESULTS: Three hundred and three residents responded from across the country. The code status was strongly associated with decisions to intubate or perform CPR and influenced the willingness to offer other invasive procedures. DNR/DNI status was associated with less frequent willingness to place central venous catheters (88.2% for DNR/DNI vs. 97.2% for full code, p < 0.001), admit patients to the intensive care unit (89.9% vs. 99.0%, p < 0.001), offer dialysis (79.3% vs. 98.0%, p < 0.001), and surgical consultation (78.7% vs. 94.2%, p < 0.001).
CONCLUSIONS: In a nationwide survey, emergency medicine residents were less willing to provide invasive procedures for patients with DNR/DNI status, including the placement of central venous catheters, admission to the intensive care unit, and consultation for dialysis and surgery.
Courts in England and Wales, Australia, and New Zealand have insisted the question of when it is acceptable to withdraw or withhold life-sustaining medical treatment from a child must be considered on a case-by-case basis. Over the last 40 years a number of cases have considered whether treatment is objectively in the child's best interests. This article seeks to identify whether there are factors identified and weighed in a consistent manner across cases. Thirty cases involving decisions about the provision of life-sustaining medical treatment to children three years old or younger were identified. Judges regularly refer to the need to weigh benefits and burdens and these factors were identified and assigned scores. Eight key factors were identified, and a scoring range was assigned to each. The factors focus on the condition and position of the child and the burdens of invasive medical treatment. The review demonstrates there are factors consistently identified and despite criticisms of the indeterminacy of the best interests test, there may be a broadly consistent approach to decision-making. Cognitive capacity and unavoidably imminent death appear to be the two most influential factors in determining whether life-sustaining treatment should be provided.