La pratique de prélèvement d’organe selon la procédure dite Maastricht III (MIII) est l’objet de discussions et de controverses éthiques. Au premier plan de ces craintes, est celle de la dérive utilitariste privilégiant une éthique sociétale à une éthique individuelle. On peut proposer néanmoins un certain nombre de garde-fous éthiques discutés dans cet article et dont les principaux sont les suivants : le MIII ne doit pas être la solution unique face à la pénurie de greffons. Les décisions de limitation et arrêt thérapeutique doivent être strictement appliquées dans le cadre de la loi Claeys Leonetti sans interférence avec l’équipe de prélèvement ; un consentement explicite est la garantie du respect de la volonté du donneur ; les procédures de sédation accompagnant l’arrêt des traitements de support vitaux doivent être identiques qu’il y ait ou non de prélèvement MIII.
Peu d’analyses des premiers résultats ont été publiées sur la procédure de don d’organes dite Maastricht 3 (M3), mise en place en 2014 en France. Pourtant, cette procédure est soumise à un conflit d’intérêt intérieur pour le médecin qui devra éclaircir son désir d’être utile aux autres par le biais de la promotion du don d’organes sans que cela n’influence sa décision d’arrêt des traitements de l’éventuel patient donneur. Ceci, alors même que les moyens d’établir un pronostic sont souvent limités. Toute modification des pratiques liées à la fin de vie au cours de l’instauration de la procédure M3 – telles la politique d’admission des patients en réanimation, l’administration de la sédation ou encore la procédure de séparation du ventilateur – peut témoigner d’une volonté de maximisation de l’utilité à court terme de cette procédure. Le consentement des proches peut lui aussi se retrouver biaisé par une forte désirabilité sociale ou par un sentiment de culpabilité, et une évaluation sereine ne sera pas réalisée du fait de la rapidité de la procédure. L’éclairage des tensions philosophiques entre les pensées conséquentialistes et déontologiques, l’importance d’un débat dans chaque structure, une indication très restrictive aux patients anoxiques les plus graves, un contrôle a posteriori indépendant, font partie des solutions proposées dans cet article pour réduire ces problèmes. Alors que la « pénurie » actuelle liée au don d’organes pourrait être résolue par un meilleur taux d’acceptabilité de prélèvements de patients en état de mort encéphalique, se pose finalement la question d’un dépassement irrémédiable des limites éthiques qui garantissent le sens premier de l’engagement des professionnels auprès de leurs patients.
During the novel coronavirus disease 2019 (COVID-19) pandemic, it is particularly critical to ensure that life-sustaining treatment (LST) such as intubation and resource-intensive cardiopulmonary resuscitation (CPR) are aligned with a patient’s goals and values, and to avoid LSTs in patients with a poor prognosis that are unlikely to be beneficial, but have a high risk of causing additional suffering. The high volume and acuity of COVID-19 patients makes it extremely challenging for emergency department (ED) clinicians to take adequate time to clarify goals of care (GOC). We implemented an ED-based COVID-19 palliative care response team focused on providing high-quality GOC conversations in time-critical situations. We examined the clinical characteristics and outcomes of patients who received this intervention.
Methods: This retrospective observational study was conducted in the ED of an urban, quaternary care academic medical center in New York, New York. We included 110 patients for whom the palliative care team was consulted between March 27, 2020, and April 10, 2020, with follow-up through May 9, 2020. Columbia University institutional review board approved this study and waived the need for informed consent.
Emergency department clinicians consulted the palliative care team for assistance with any palliative care-related needs, including GOC clarification and cases where stated GOC did not align with expected prognosis. The palliative care team (1 attending physician who was board-certified in hospice and palliative medicine, 1 hospice/palliative medicine fellow clinician, and 4 psychiatry resident physicians and fellow clinicians, all trained in GOC conversations and supervised by the palliative care attending physician) was available in person 12 hours per day, and for phone consultation overnight and on weekends. The palliative care intervention focused on GOC conversations: conveying the prognosis in a clear and simple way, exploring patients’ goals and values, and making care recommendations based on elicited goals.1,2
Deidentified demographic data were collected from the medical record. Primary outcomes included GOC before and after palliative care intervention, as well as GOC on death or discharge. Secondary outcomes included clinical course and length of stay in the hospital
Goals of care were defined as “full code” (pursue all LSTs including intubation and CPR); “do-not-resuscitate (DNR) only” (pursue all LSTs excluding CPR); “DNR/do-not-intubate (DNI), continue medical treatment” (pursue all LSTs excluding intubation and CPR); and “comfort-directed care” (forgo LSTs, deliver symptom-focused treatment only). The GOC were presumed to be full code if no advance directives or medical orders for life-sustaining treatment (MOLST) were found on presentation to the ED.
Six patients were still hospitalized at the time of data review; they were excluded from the analysis for clinical course.
Results: The 110 patients were aged a median (range) of 81.5 (46-101) years and 61 (55.4%) were women. Patient demographic and clinical characteristics are reported in Table 1. Most patients were community-dwelling elderly persons (aged >75 years) with at least 2 comorbidities and lacked decision-making capacity at the time of presentation. Very few patients presented with documented advance directives or MOLST and therefore were presumed to be full code.
The primary outcomes are summarized in Table 2. After initial palliative care intervention, the number of full code decreased from 91 patients (82.7%) to 20 patients (18.2%). Among these 71 patients (64.5%) in whom CPR was declined, mechanical ventilation was also declined in 61 patients (55.5%) (ie, 32 patients in DNR/DNI, continue medical treatment, 29 patients in comfort-directed care). On discharge, the number of full code further decreased to 9 patients (8.6%), whereas comfort-directed care increased to 54 patients (51.9%). The median (range) length of stay was 4 (0-28) days and 71 patients (68.2%) died in the hospital. Among 33 patients (31.7%) who were discharged alive, 6 patients (5.8%) were discharged with hospice care.
Discussion: The included patients’ demographic characteristics were consistent with those of critically ill patients with COVID-19 previously reported and with those of patients reported to be at highest risk of death from COVID-19. Patients without advance care planning conversations are known to be at risk of receiving unwanted, high-intensity, lower-quality care,5 even though many seriously ill patients do not prefer LSTs at the end of life.6
The most important finding in this study was, after palliative care intervention in the ED, most patients and their surrogates opted to forgo mechanical ventilation and/or CPR, and that tendency further increased on discharge. We believe timely GOC conversations by the palliative care team helped avoid unwanted LSTs for patients with a poor prognosis. Study limitations include potentially limited generalizability given the retrospective design at a single institution. Also, palliative care consultation was initiated by ED clinicians, which may have led to selection bias, though a high rate of altered GOC after intervention suggests significant, unaddressed need in the outlying population.
Background: The Scottish Government’s vision for older people is that ‘Older people are valued as an asset; their voices are heard and they are supported to enjoy full and positive lives.’ In the health and social care setting in Scotland it is increasingly recognised that there is a need for careful planning of care for older patients with complex comorbidities, and that this should involve the patient where possible via a process of shared decision making (SDM).
Aim: To establish what future planning for healthcare decision making and end-of-life care was undertaken in the care of the older patients in a secondary care facility, and how much they participate in this process.
Method: An audit was conducted across four wards in the care of the older patient setting in a hospital for older patients in Scotland. Over a 2-week period, all patients’ charts (n = 82) were reviewed, and evidence was examined on whether the following documents were in place: a do not resuscitate order; an escalation of medical care plan; and an assessment of capacity/incapacity.
Results: The majority of patients (55%) had a resuscitation plan in place. An Incapacity Statement was also in place for the majority of patients who required it (90%). The escalation of medical care plan was only completed for a minority of patients, mainly those on the palliative care ward.
Conclusion: Plans for decision making around resuscitation were reasonably well developed. However, planning for other, more complex, future medical care needs was less well defined or explored with older patients.
The devastating pandemic that has stricken the worldwide population induced an unprecedented influx of patients in ICUs, raising ethical concerns not only surrounding triage and withdrawal of life support decisions, but also regarding family visits and quality of end-of-life support. These ingredients are liable to shake up our ethical principles, sharpen our ethical dilemmas, and lead to situations of major caregiver sufferings. Proposals have been made to rationalize triage policies in conjunction with ethical justifications. However, whatever the angle of approach, imbalance between utilitarian and individual ethics leads to unsolvable discomforts that caregivers will need to overcome. With this in mind, we aimed to point out some critical ethical choices with which ICU caregivers have been confronted during the Covid-19 pandemic and to underline their limits. The formalized strategies integrating the relevant tools of ethical reflection were disseminated without deviating from usual practices, leaving to intensivists the ultimate choice of decision.
Background: Fibrotic interstitial lung disease is an incurable disease with poor prognosis. We aimed to understand factors affecting decisions regarding referrals to specialist palliative care services and to address barriers and facilitators to referrals from healthcare professionals’ perspectives.
Methods: A survey study of healthcare professionals, including respiratory physicians, interstitial lung disease nurse specialists, respiratory nurse specialists and palliative care physicians, was conducted using a questionnaire, entailing 17 questions.
Results: Thirty-six respondents, including 15 interstitial lung disease nurse specialists completed the questionnaire. Symptom control, psychological/spiritual support, general deterioration and end-of-life care were the most common reasons for referrals to specialist palliative care services. Most respondents felt confident in addressing palliative care needs and discussing palliative care with patients. A few participants emphasised that experienced respiratory nurse specialists are well placed to provide symptom management and to ensure continuity of patient care. Participants reported that access to palliative care could be improved by increasing collaborative work between respiratory and palliative care teams.
Conclusions: Most respondents felt that enhancing access to specialist palliative care services would benefit patients. However, palliative care and respiratory care should not be considered as mutually exclusive and multidisciplinary approach is recommended.
Purpose: An important role of the rapid response system (RRS) is to provide opportunities for end-of-life care (EOLC) decisions to be appropriately operationalized. We investigated whether EOLC decisions were made after the RRS-recommended EOLC decision to the primary physician.
Materials and Methods: We studied whether patients made EOLC decisions consistent with the rapid response team’s (RRT) recommendations, between January 1, 2017, and February 28, 2019. The primary outcome was the EOLC decision after the RRT’s recommendation to the primary physician. The secondary outcome was the mechanism of EOLC decision-making: through institutional do-not-resuscitate forms or the Korean legal forms of Life-Sustaining Treatment Plan (LSTP).
Results: Korean LSTPs were used in 26 of the 58 patients who selected EOLC, from among the 75 patients for whom the RRS made an EOLC recommendation. Approximately 7.2% of EOLC decisions for inpatients were related to the RRT’s interventions in EOLC decisions. Patients who made EOLC decisions did not receive cardiopulmonary resuscitation, mechanical ventilation, or dialysis.
Conclusion: The timely intervention of the RRS in EOLC facilitates an objective assessment of the patient’s medical conditions, the limitation of treatments that may be minimally beneficial to the patient, and the choice of a higher quality of care. The EOLC decision using the legal process defined in the relevant Korean Act has advantages, wherein patients can clarify their preference, the family can prioritize the patient’s preference for EOLC decisions, and physicians can make transparent EOLC decisions based on medical evidence and informed patient consent.
Background: Decisions of withholding or withdrawing life sustaining-treatments in emergency department are part of current practice but the decision-making process remains poorly described in the literature.
Study objective: We conducted a study in two phases, the first comprising a retrospective chart review study of patients dying in the ED and the second comprising survey study of health care workers at 10 urban emergency departments in France.
Method: In a first step, we analyzed medical records based on fifteen criteria of the decision-making process grouped into four categories: the collegiality, the traceability, the management and the communication as recommended by the international guidelines. In a second step, we conducted an auto-administrated survey to assess how the staff members (medical, paramedical) feel with the decision-making process.
Results: There were 273 deaths which occurred in the ED over the study period and we included 145 (53.1%) patients. The first-step analysis revealed that the traceability of the decision and the information given to patient or the relatives were the most reported points according to the recommendations. Three of the ten emergency departments had developed a written procedure. The collegial discussion and the traceability of the prognosis assessment were significantly increased in emergency department with a written procedure as well as management of pain, comfort care, and the communication with the patient or the relatives. In the second-step analysis, among the 735 staff members asked to take part in the survey, 287 (39.0%) answered. The medical and paramedical staff expressed difficult experience regarding the announcement and the communication with the patient and the relatives.
Conclusion: The management of the decision to withhold or withdraw life-sustaining treatments must be improved in emergency departments according to the guidelines. A standard written procedure could be useful in clinical practice despite the lack of experienced difference between centers with and without procedures.
La question de la décision médicale en néonatologie est complexe : en raison de de la place particulière qu’ont les parents vis-à-vis du nouveau-né. Elle présente un dilemme souvent discuté dans la littérature. Ce témoignage vise à donner des arguments en faveur de la position selon laquelle, dans les décisions médicales de fin de vie, ce sont les parents qui doivent: les parents doivent pouvoir, s’ils le souhaitent, porter la responsabilité de la décision.
Early in the COVID-19 pandemic, I got a call from an internal medicine resident for a new palliative care consult. The resident was at a loss; she did not know how to advise the patient's family about her prognosis. Should she place a feeding tube in this patient who, recovering from COVID-19, now could not wake up?
Background: Decision making regarding the treatment of neonates with poor prognoses is difficult for healthcare staff working in the neonatal intensive care unit (NICU). This study aimed to investigate the attitudes of physicians and nurses about the value of life and ethical decision making when encountering neonates with poor prognosis in the NICU.
Methods: This cross-sectional study was conducted in five NICUs of five hospitals in Tehran city, Iran. The attitudes of 144 pediatricians, gynecologists and nurses were assessed using the questionnaire of attitude toward the value of life and agreement on intensive care management based on three hypothetical case scenarios of neonates with poor prognosis. Data were analyzed using descriptive and inferential statistics via the SPSS software.
Results: The negative agreement on the no initiation of intensive care measures and the discontinuation of resuscitation in neonates with poor prognosis was more than the positive agreement. Also, various factors influenced the participants' decision making for the provision of care to neonates. Regarding the case scenarios, the participants agreed on the provision of aggressive, conservative, and palliative care with various frequencies. This study confirms the importance of healthcare providers' perspectives and their impacts on ethical decision making. The participants favored the value or sacredness of life and agreed on the use of all therapeutic measures for saving the lives of neonates with poor prognosis.
Conclusion: More studies are required to improve our understandings of factors influencing ethical decision making by healthcare providers when encountering neonates with poor prognosis in NICUs.
This book examines the ethics of end of life care, focusing on the kinds of decisions that are commonly made in clinical practice. Specific attention is paid to the intensification of treatment for terminal symptoms, particularly pain relief, and the withdrawal and withholding of care, particularly life-saving or life-prolonging medical care. The book is structured into three sections. The first section contains essays examining end of life care from the perspective of moral theory and theology. The second sets out various conceptual terms and distinctions relevant to decision-making at the end of life. The third section contains chapters that focus on substantive ethical issues. This format not only provides for a comprehensive analysis of the ethical issues that arise in the context of end of life care but allows readers to effectively trace the philosophical, theological and conceptual underpinnings that inform their specific interests. This work will be of interest to scholars working in the area as well as clinicians, specialists and healthcare professionals who encounter these issues in the course of their practice.
There is a concern that as a result of COVID-19 there will be a shortage of ventilators for patients requiring respiratory support. This concern has resulted in significant debate about whether it is appropriate to withdraw ventilation from one patient in order to provide it to another patient who may benefit more. The current advice available to doctors appears to be inconsistent, with some suggesting withdrawal of treatment is more serious than withholding, while others suggest that this distinction should not be made. We argue that there is no ethically relevant difference between withdrawing and withholding treatment and that suggesting otherwise may have problematic consequences. If doctors are discouraged from withdrawing treatment, concern about a future shortage may make them reluctant to provide ventilation to patients who are unlikely to have a successful outcome. This may result in underutilisation of available resources. A national policy is urgently required to provide doctors with guidance about how patients should be prioritised to ensure the maximum benefit is derived from limited resources.
Elisabeth Kübler-Ross' seminal 1969 work, On Death and Dying, opened the door to understanding individuals' emotional experiences with serious illness and dying. Patient's emotions, however, are only half the story in the patient-physician relationship. In recent years physicians' emotional reactions have gotten more attention. These sometimes-unacknowledged emotions influence how we approach our work, including life and death decisions. This article reviews some of the main emotions physicians experience when caring for seriously ill and dying patients and the challenges physicians face in regulating their emotions in a professional setting. We also discuss some of the ways that physician emotion may influence medical decision-making and contribute to conflict. Attention to the emotional level of physician experience may promote better care.
A patient with a life-threatening intracranial insult presents a difficult situation to the neurosurgeon. In a few short minutes the neurosurgeon must assess the patient's neurologic status, imaging, and medical condition then confer with the patient's proxy regarding treatment. This assessment ideally includes recognition of situations where aggressive care is futile and therefore such treatments should not be offered. The proxy discussion must involve surgical and nonsurgical management options and the impact of these options on survival and residual disability. Surgical decision-making is frequently difficult, even for designated proxies armed with advance directives, as these documents are usually vague with regard to acceptable functional outcomes. To complicate things further, when emergencies are off-hours, housestaff or physician extenders may need to represent the medical team in these discussions so that surgical treatment, if desired, can be arranged expeditiously. These difficulties sometimes lead to the performance of emergent surgical procedures in situations where poor outcome is certain, with deleterious effects to the patient, family, and healthcare system. It is clear then that neurosurgeons as well as their housestaff and extenders should have working knowledge of prognostic information relating to intracranial insults and familiarity with the complex ethical concept of medical futility. In this paper we review the relevant literature and our goal is to juxtapose these topics so as to provide a framework for decision making in that critical time.
PURPOSE OF REVIEW: To familiarize pediatric anesthesiologists with primary palliative care procedural communication skills and recommendations for discussions involving complex medical decision-making or advance care planning, such as discussions about resuscitation status.
RECENT FINDINGS: Recent publications highlight the benefits of pediatric palliative care (PPC) for seriously ill patients and their families, and how PPC principles might be applied to perioperative communication and decision-making. Both prospective and retrospective reports reveal improved quality of life, symptom management, and avoidance of unnecessary interventions when PPC is introduced early for a child with serious illness.
SUMMARY: Pediatric anesthesiologists will, at some point, care for a child with serious illness who would benefit from PPC. It is important that all members of the perioperative care team are familiar with primary PPC procedural communication skills and models for approaching discussions about goals of care, shared decision-making, and advance care planning. Pediatric anesthesiologists should be incorporated as early as possible in team discussions about potential procedures requiring sedation for seriously ill children.
Purpose: Scarce evidence exists regarding end-of-life decision (EOLD) in neurocritically ill patients. We investigated the factors associated with EOLD making, including the group and individual characteristics of involved healthcare professionals, in a multiprofessional neurointensive care unit (NICU) setting.
Materials and methods: A prospective, observational pilot study was conducted between 2013 and 2014 in a 10-bed NICU. Factors associated with EOLD in long-term neurocritically ill patients were evaluated using an anonymised survey based on a standardised questionnaire.
Results: 8 (25%) physicians and 24 (75%) nurses participated in the study by providing their ‘treatment decisions’ for 14 patients at several time points. EOLD was ‘made’ 44 (31%) times, while maintenance of life support 98 (69%) times. EOLD patterns were not significantly different between professional groups. The individual characteristics of the professionals (age, gender, religion, personal experience with death of family member and NICU experience) had no significant impact on decisions to forgo or maintain life-sustaining therapy. EOLD was patient-specific (intraclass correlation coefficient: 0.861), with the presence of acute life-threatening disease (OR (95% CI): 18.199 (1.721 to 192.405), p=0.038) and low expected patient quality of life (OR (95% CI): 9.276 (1.131 to 76.099), p=0.016) being significant and independent determinants for withholding or withdrawing life-sustaining treatment.
Conclusions: Our findings suggest that EOLD in NICU relies mainly on patient prognosis and not on the characteristics of the healthcare professionals.
The COVID-19 pandemic and its sequelae have created scenarios of scarce medical resources, leading to the prospect that healthcare systems have faced or will face difficult decisions about triage, allocation and reallocation. These decisions should be guided by ethical principles and values, should not be made before crisis standards have been declared by authorities, and, in most cases, will not be made by bedside clinicians. Do not attempt resuscitation (DNAR) and withholding and withdrawing decisions should be made according to standard determination of medical appropriateness and futility, but there are unique considerations during a pandemic. Transparent and clear communication is crucial, coupled with dedication to provide the best possible care to patients, including palliative care. As medical knowledge about COVID-19 grows, more will be known about prognostic factors that can guide these difficult decisions.
How long will this pandemic last? When will we find a treatment or vaccine? Which drug should we give our patients? Will we run out of personal protective equipment (PPE)? When will everyone return to work? We find ourselves in a time of great economic, social, and medical uncertainty. Faced with a crisis, Lee Iacocca, the late automobile company executive, once said, “So what do we do? Anything. Something… . If we screw it up, start over. Try something else. If we wait until we’ve satisfied all the uncertainties, it may be too late.” Similarly, in the heat of the Great Depression, Franklin Roosevelt commented, “Take a method and try it. If it fails, admit it frankly and try another. But by all means, try something.” Though a trial-and-error approach may be appropriate in business and politics, should it be applied to medical decision making during a pandemic?
Previously-stated DNR status would seem irrelevant to ventilator allocation, and yet some existing and proposed guidelines for triage during a public health emergency list DNR status in the list of criteria for excluding patients from getting ventilators or other life-saving health care. This approach is in direct opposition to the generally agreed-upon goal of maximizing the number of survivors, and could result in confusion and public mistrust of the health care system.