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.
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.
La majorité des patients COVID-19 hospitalisés ont plus de 70 ans et 50 % de ceux qui en décèdent ont plus de 83 ans. La clinique typique n’est pas toujours présente chez les personnes très âgées qui peuvent être et rester totalement asymptomatiques (dépistage contact) ou avoir des manifestations aspécifiques (baisse de l’état général, chutes, delirium, fatigue). Le frottis anal, qui minimise le risque d’exposition, peut s’avérer très utile en EMS lors de diarrhées. L’âge avancé est un marqueur de mauvais pronostic, mais devrait être pondéré à l’aide d’index pronostiques pour tenir compte de l’hétérogénéité de l’état de santé, fonctionnel et cognitif à l’âge avancé. Recueillir les souhaits de la personne et évaluer son espérance de vie restante permet d’anticiper les décisions de soins selon le niveau de tension du système de santé.
With services overburdened, healthcare professionals are having to decide who should receive treatment. Dave Archard says this is no excuse for wandering blindly into discrimination, but Arthur Caplan argues age is a valid criterion when supported by data.
Background: The coronavirus disease 2019 pandemic has or threatens to overwhelm health care systems. Many institutions are developing ventilator triage policies.
Objective: To characterize the development of ventilator triage policies and compare policy content.
Design: survey and mixed-methods content analysis.
Setting: North American hospitals associated with members of the Association of Bioethics Program Directors.
Participants: Program directors.
Measurements: Characteristics of institutions and policies, including triage criteria and triage committee membership.
Results: sixty-seven program directors responded (response rate, 91.8%); 36 (53.7%) hospitals did not yet have a policy, and 7 (10.4%) hospitals' policies could not be shared. The 29 institutions providing policies were relatively evenly distributed among the 4 U.S. geographic regions (range, 5 to 9 policies per region). Among the 26 unique policies analyzed, 3 (11.3%) were produced by state health departments. The most frequently cited triage criteria were benefit (25 policies [96.2%]), need (14 [53.8%]), age (13 [50.0%]), conservation of resources (10 [38.5%]), and lottery (9 [34.6%]). Twenty-one (80.8%) policies use scoring systems, and 20 of these (95.2%) use a version of the Sequential Organ Failure Assessment score. Among the policies that specify the triage team's composition (23 [88.5%]), all require or recommend a physician member, 20 (87.0%) a nurse, 16 (69.6%) an ethicist, 8 (34.8%) a chaplain, and 8 (34.8%) a respiratory therapist. Thirteen (50.0% of all policies) require or recommend those making triage decisions not be involved in direct patient care, but only 2 (7.7%) require that their decisions be blinded to ethically irrelevant considerations.
Limitation: the results may not be generalizable to institutions without academic bioethics programs.
Conclusion: Over one half of respondents did not have ventilator triage policies. Policies have substantial heterogeneity, and many omit guidance on fair implementation.
Purpose: Life-sustaining treatment (LST) decisions for patients and caregivers at the end-of-life (EOL) process are supported by the “Act on Hospice and Palliative Care and Decisions on LST for Patients at the EOL,” enforced in February 2018. It remains unclear whether the act changes EOL decisions and LST implementation in clinical practice. For this study, we investigated patients’ decision-making regarding LSTs during the EOL process since the act’s enforcement.
Materials and Methods: Retrospective reviews were conducted on adult patients who were able to decide to terminate LST and died at Seoul National University Hospital between February 5, 2018, and February 5, 2019. We examined demographics, who made the decisions, the type and date of documentation confirming patient's LST, and whether the LST was withheld or withdrawn.
Results: Of 809 patients who were enrolled, 29% (n=231) completed forms regarding LST themselves, and 71% (n=578) needed family members to decide. The median time from confirmation of the EOL process to death and from the Advance Statement to death were 2 and 5 days, respectively (both ranges, 0 to 244). In total, 90% (n=727) of patients withheld treatment, and 10% (n=82) withdrew it. We found a higher withdrawal rate when family members made the decisions (13.3% vs. 1.7%, p < 0.001).
Conclusion: After the act’s enforcement, withdrawing LSTs became lawful and self-determination rates increased. Family members still make 71% of decisions regarding LSTs, but these are often inconsistent with the patients’ wishes; thus, further efforts are needed to integrate the new act into clinical practice.
Background: In order to avoid unnecessary use of hospital services at the end-of-life, palliative care should be initiated early enough in order to have sufficient time to initiate and carry out good quality advance care planning (ACP). This single center study assesses the impact of the PC decision and its timing on the use of hospital services at EOL and the place of death.
Methods: A randomly chosen cohort of 992 cancer patients treated in a tertiary hospital between Jan 2013 –Dec 2014, who were deceased by the end of 2014, were selected from the total number of 2737 identified from the hospital database. The PC decision (the decision to terminate life-prolonging anticancer treatments and focus on symptom centered palliative care) and use of PC unit services were studied in relation to emergency department (ED) visits, hospital inpatient days and place of death.
Results: A PC decision was defined for 82% of the patients and 37% visited a PC unit. The earlier the PC decision was made, the more often patients had an appointment at the PC unit (> 180 days prior to death 72% and < 14 days 10%). The number of ED visits and inpatient days were highest for patients with no PC decision and lowest for patients with both a PC decision and an PC unit appointment (60 days before death ED visits 1.3 vs 0.8 and inpatient days 9.9 vs 2.9 respectively, p < 0.01). Patients with no PC decision died more often in secondary/tertiary hospitals (28% vs. 19% with a PC decision, and 6% with a decision and an appointment to a PC unit).
Conclusions: The PC decision to initiate a palliative goal for the treatment had a distinct impact on the use of hospital services at the EOL. Contact with a PC unit further increased the likelihood of EOL care at primary care.
Purpose: Intensive care unit health care professionals must be skilled in providing end-of-life care. Crucial in this kind of care is end-of-life decision-making, which is a complex process involving a variety of stakeholders and requiring adequate justification. The aim of this systematic review is to analyse papers tackling ethical issues in relation to end-of-life decision-making in intensive care units. It explores the ethical positions, arguments and principles.
Methods: A literature search was conducted in bibliographic databases and grey literature sources for the time period from 1990 to 2019. The constant comparative method was used for qualitative analysis of included papers in order to identify ethical content including ethical positions, ethical arguments, and ethical principles used in decision-making process.
Results: In the 15 included papers we have identified a total of 43 ethical positions. Ten positions were identified as substantive, 33 as procedural. Twelve different ethical principles emerged from the ethical arguments. The most frequently used principles are the principles of beneficence, autonomy and nonmaleficence.
Conclusions: We have demonstrated that recommendations and guidelines designed specifically by intensive or critical care experts for intensive care units promote similar ethical positions, with minimal dissenting positions.
As the coronavirus disease 2019 (COVID-19) pandemic intensifies, shortages of ventilators have occurred in Italy and are likely imminent in parts of the US. In ordinary clinical circumstances, all patients in need of
mechanical ventilation because of potentially-reversible conditions receive it, unless they or their surrogates decline. However, there are mounting concerns in many countries that this will not be possible and that patients
who otherwise would likely survive if they received ventilator support will die because no ventilator is available. In this type of public health emergency, the ethical obligation of physicians to prioritize the well-being of individual
patients may be overridden by public health policies that prioritize doing the greatest good for the greatest number of patients.These circumstances raise a critical question: when demand for ventilators and other intensive
treatments far outstrips the supply, what criteria should guide these rationing decisions?
Covid-19 is officially a pandemic. It is a novel infection with serious clinical manifestations, including death, and it has reached at least 124 countries and territories. Although the ultimate course and impact of Covid-19 are uncertain, it is not merely possible but likely that the disease will produce enough severe illness to overwhelm health care infrastructure. Emerging viral pandemics “can place extraordinary and sustained demands on public health and health systems and on providers of essential community services.” Such demands will create the need to ration medical equipment and interventions.
[Début de l'article]
The Covid-19 pandemic has led to severe shortages of many essential goods and services, from hand sanitizers and N-95 masks to ICU beds and ventilators. Although rationing is not unprecedented, never before has the American public been faced with the prospect of having to ration medical goods and services on this scale.
[Début de l'article]
Background. Modern intensive care methods led to an increased survival of critically ill patients over the last decades. But an unreflected application of modern intensive care measures might lead to prolonged treatment for incurable diseases, and an inadaequate or too aggressive therapy can prolong the dying process of patients. In this study, we analysed end-of-life decisions regarding withholding and withdrawal of intensive care measures in a German intensive care unit (ICU) of a communal tertiary hospital.
Methods. Patient datasets of all adult patients dying in an ICU or an intermediate care unit (IMC) in a tertiary communal hospital (Klinikum Hanau, Germany) between 01.01.2011 and 31.12.2012 were analysed for withholding and withdrawal of intensive care measures.
Results. During the two-year period, 1317 adult patients died in Klinikum Hanau. Of these, 489 (37%) died either in an ICU/IMC unit. The majority of those deceased patients (n = 427, 87%) was 60 years or older. In 306 (62%) of 489 patients, at least one life-sustaining measure was withheld or withdrawn. In 297 (61%) of 489 patients dying in ICU/IMC, any type of therapy was withheld, and in 139 patients (28%), any type of therapy was withdrawn. Mostly, cardiopulmonary resuscitation (n = 222), invasive (n = 121) and noninvasive (n = 40) ventilation followed by renal replacement therapy (n = 71) and catecholamine therapy (n = 66) were withheld. More invasive measures as ventilation or renal replacement therapy were withdrawn in 18 and 22 patients only. After withholding/withdrawal of therapy, most patients died within two days. More than 20% of patients dying in ICU/IMC did not have an analgesic medication.
Conclusions. About one-third of patients dying in the hospital died in ICU/IMC. At least one life-sustaining therapy was limited/withdrawn in more than 60% of those patients. Withholding of a therapy was more common than active therapy withdrawal. Ventilation and renal replacement therapy were withdrawn in less than 5% of patients, respectively.
OBJECTIVES: The 2014 Court of Appeals decision with respect to Tracey vs Cambridge University Hospital ('the Tracey judgement') changed the requirements for discussing Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions with patients. This study is a retrospective case note review aiming to identify any changes in practice around discussing DNACPR decisions in hospices following the judgement.
METHODS: 150 case notes from 2013 (before the Tracey judgement) were compared with 150 case notes from 2015 (following the Tracey judgement). These notes came from five hospices in the West Midlands. The notes were analysed to determine if the judgement resulted in changes to how frequently DNACPR decisions were discussed with patients and their families, as well as whether there were any changes in the documentation of reasons for not discussing such decisions.
RESULTS: Discussions with patients around DNACPR decisions increased from 31% to 60% and with relatives from 29% to 59% following the Tracey judgement. Prior to the judgement the most frequently documented reason for not discussing was to avoid distress (23%), whereas after judgement it was patients lacking capacity to engage in such a discussion (40%). There was a lack of consistency and clarity in defining the concept of 'physical or psychological harm'.
CONCLUSIONS: Although DNACPR decisions are being discussed more frequently with patients and families following the Tracey judgement, clarity on what constitutes 'physical or psychological harm' caused by these discussions is still required. Future research must examine whether the judgement is delaying or preventing DNACPR decisions being made.
Prognosis after severe brain injury is highly uncertain, and decisions to withhold or withdraw life-sustaining treatment are often made prematurely. These decisions are often driven by a desire to avoid a situation where the patient becomes 'trapped' in a condition they would find unacceptable. However, this means that a proportion of patients who would have gone on to make a good recovery, are allowed to die. I propose a shift in practice towards the routine provision of aggressive care, even in cases where the probability of survival and acceptable recovery is thought to be low. In conjunction with this shift, I argue in favour of a presumption towards withdrawing life-sustaining treatment, including artificial nutrition and hydration, when it becomes clear that a patient will not recover to a level that would be acceptable to them. I then respond to three potential objections to this proposal.