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.
On March 28, 2020, the Office of Civil Rights at the Department of Health and Human Services (HHS) opened investigations into recently released critical care crisis triage protocols. Disability rights advocates are urging Congress to prohibit crisis triage based on “anticipated or demonstrated resource-intensity needs, the relative survival probabilities of patients deemed likely to benefit from medical treatment, and assessments of pre- or post-treatment quality of life.”
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.
Cet ouvrage aborde la nécessité de réfléchir ensemble au sens du prendre soin et du fait d'être soigné pour mettre en valeur l'importance d'une implication personnelle de chacun dans la relation en vue de soins de qualité.
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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: 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.
Introduction: Pediatric residents are faced with ethical dilemmas in beginning- and end-of-life situations throughout their training. These situations are innately challenging, yet despite recommendations that residents receive training in ethics and end-of-life domains, they continue to report the need for additional training. To address these concerns, we developed an interactive and reflective palliative care and medical ethics curriculum including sessions focusing on ethical dilemmas at the beginning and end of life.
Methods: This module includes a trio of case-based, small-group discussions on artificial nutrition and hydration, futility, and ethical considerations in neonatology. Content was developed based on a needs assessment, input from local experts, and previously published material. Trainees completed assessments of comfort and understanding before and after each session.
Results: The module was attended and assessed by an average of 27 trainees per session, including residents and medical students. Knowledge of ethical considerations improved after individual sessions, with 86% of trainees reporting understanding ethical considerations involved in the decision to withdraw or withhold medically provided nutrition and hydration and 67% of trainees reporting understanding the use of the term futility. Trainee comfort in providing counseling or recommendations regarding specific ethical issues demonstrated a trend toward improvement but did not reach statistical significance.
Discussion: We successfully implemented this innovative module, which increased trainees' comfort with end-of-life care and ethical conflicts. Future studies should focus on the trainees' ability to implement these skills in clinical practice.
'Futility' is a contentious term that has eluded clear definition, with proposed descriptions either too strict or too vague to encompass the many facets of medical care. Requests for futile care are often surrogates for requests of a more existential character, covering the whole range of personal, emotional, cultural and spiritual needs. Physicians and other practitioners can use requests for futile care as a valuable opportunity to connect with their patients at a deeper level than the mere biomedical diagnosis. Current debate around Canada's changing regulatory and legal framework highlights challenges in appropriately balancing the benefits and burdens created by requests for futile care.
COVID-19 continues to impact older adults disproportionately, from severe illness and hospitalization to increased mortality risk. Concurrently, concerns about potential shortages of healthcare professionals and health supplies to address these needs have focused attention on how resources are ultimately allocated and used. Some strategies misguidedly use age as an arbitrary criterion, which inappropriately disfavors older adults. This statement represents the official policy position of the American Geriatrics Society (AGS). It is intended to inform stakeholders including hospitals, health systems, and policymakers about ethical considerations to consider when developing strategies for allocating scarce resources during an emergency involving older adults. Members of the AGS Ethics Committee collaborated with interprofessional experts in ethics, law, nursing, and medicine (including geriatrics, palliative care, emergency medicine, and pulmonology/critical care) to conduct a structured literature review and examine relevant reports. The resulting recommendations defend a particular view of distributive justice that maximizes relevant clinical factors and de-emphasizes or eliminates factors placing arbitrary, disproportionate weight on advanced age. The AGS positions include: (1) avoiding age per se as a means for excluding anyone from care; (2) assessing comorbidities and considering the disparate impact of social determinants of health; (3) encouraging decision makers to focus primarily on potential short-term (not long-term) outcomes; (4) avoiding ancillary criteria such as "life-years saved" and "long-term predicted life expectancy" that might disadvantage older people; (5) forming and staffing triage committees tasked with allocating scarce resources; (6) developing institutional resource allocation strategies that are transparent and applied uniformly; and (7) facilitating appropriate advance care planning. The statement includes recommendations that should be immediately implemented to address resource allocation strategies during COVID-19, aligning with AGS positions. The statement also includes recommendations for post-pandemic review. Such review would support revised strategies to ensure that governments and institutions have equitable emergency resource allocation strategies, avoid future discriminatory language and practice, and have appropriate guidance to develop national frameworks for emergent resource allocation decisions.
In view of the exceptional public health situation caused by the COVID-19 pandemic, a consensus work has been promoted from the ethics group of the Spanish Society of Intensive, Critical Medicine and Coronary Units (SEMICYUC), with the objective of finding some answers from ethics to the crossroads between the increase of people with intensive care needs and the effective availability of means. In a very short period, the medical practice framework has been changed to a 'catastrophe medicine' scenario, with the consequent change in the decision-making parameters. In this context, the allocation of resources or the prioritization of treatment become crucial elements, and it is important to have an ethical reference framework to be able to make the necessary clinical decisions. For this, a process of narrative review of the evidence has been carried out, followed by a unsystematic consensus of experts, which has resulted in both the publication of a position paper and recommendations from SEMICYUC itself, and the consensus between 18 scientific societies and 5 institutes/chairs of bioethics and palliative care of a framework document of reference for general ethical recommendations in this context of crisis.
Early on, geriatricians in Israel viewed with increasing alarm the spread of COVID-19. It was clear that this viral disease exhibited a clear predilection for and danger to older persons. Informal contacts began with senior officials from the country's Ministry of Health, the Israel Medical Association and the country's largest Health Fund; this in order to plan an approach to the possible coming storm. A group was formed, comprising three senior geriatricians, a former dean, palliative care specialist and a lawyer/ethicist. The members made every effort to ensure that its recommendations would be practical while at the same time taking into account the tenets of medical ethics. The committee's main task was to think through a workable approach were ICU/ventilator resources be far outstripped by those requiring such care. Recommendations included the approach to older persons both in the community and long term care institutions, a triage instrument and palliative care. Patient autonomy was emphasized with a strong recommendation for people of all ages to update their advance directives or if they did not have any, to quickly draw them up. Considering the value of distributive justice, with respect to triage, a "soft utilitarian" approach was advocated with the main criteria being function and co-morbidity. While chronological age was rejected as a sole criterion, in the case of an overwhelming crisis, "biological age" would enter into the triage considerations; but only in the case of distinguishing between people with equal non-age related deficits. The guideline emphasized that no matter what, in the spirit of beneficence, anyone who fell ill must receive active palliative care throughout the course of a COVD-19 infection but especially at the end of life. Furthermore, in the spirit of non-maleficence, the very frail, old-old and severely demented would be actively protected from dying on ventilation.
COVID-19 continues to impact older adults disproportionately with respect to serious consequences ranging from severe illness and hospitalization to increased mortality risk. Concurrently, concerns about potential shortages of healthcare professionals and health supplies to address these issues have focused attention on how these resources are ultimately allocated and used. Some strategies, for example, misguidedly use age as an arbitrary criterion, which disfavors older adults in resource allocation decisions. This is a companion manuscript to the American Geriatrics Society (AGS) position statement, "Resource Allocation Strategies and Age-Related Considerations in the COVID-19 Era and Beyond." It is intended to inform stakeholders including hospitals, health systems, and policymakers about ethical considerations that should be considered when developing strategies for allocation of scarce resources during an emergency involving older adults. This review presents the legal and ethical background for the position statement and discusses the following issues that informed the development of the AGS positions: (1) age as a determining factor; (2) age as a tiebreaker; (3) criteria with a differential impact on older adults; (4) individual choices and advance directives; (5) racial/ethnic disparities and resource allocation; and (6) scoring systems and their impact on older adults. It also considers the role of advance directives as expressions of individual preferences in pandemics.
The global pandemic of coronavirus disease 2019 (COVID-19) is placing significant strain on health-care resources worldwide Although most patients infected with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) do not require hospital admission, severe illness commonly leads to acute respiratory distress syndrome necessitating invasive mechanical ventilation. Unfortunately, ventilator scarcity has become a bottleneck in the provision of care to critically ill patients with COVID-19.
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.
Today's coronavirus pandemic is novel, but the ethical dilemmas it presents are not. In the modern era, physicians have helped patients face the influenza pandemics of 1918, the 1950s, the 1960s, and 2009; HIV/AIDS (1980s and beyond); severe acute respiratory syndrome (2002); and Middle East respiratory syndrome (2015). Physicians cannot do it alone: Institutions must support their efforts (and have a responsibility to provide protection from occupational exposures). Longstanding principles of medical ethics should guide the profession, individual clinicians, health systems, and our society. They must be reaffirmed in the circumstances of health system catastrophes, during which their application—but not the principles themselves—may change. These principles include justice; equity; and, fundamentally, the physician's duty to care for all and not discriminate against a class or category of patients (for example, on the basis of age, race, ethnicity, disability, sex, gender identity, social status, or other personal characteristics).
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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.
In current debates about allocation of scarce ICU resources, we suggest there is undue optimism about the ‘good’ of intensive care unit (ICU) access. Most critical COVID-19 patients who receive access to a ventilator will still die. The minority who survive will likely leave with significant morbidity and a long and uncertain road to recovery. This reality is obscured in the current bioethics literature on ICU triage in which scarcity and value are conflated.
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With healthcare systems under pressure from scarcity of resources and ever-increasing demand for services, difficult priority setting choices need to be made. At the same time, increased attention to patient involvement in a wide range of settings has given rise to the idea that those who are eventually affected by priority setting decisions should have a say in those decisions. In this paper, we investigate arguments for the inclusion of patient representatives in priority setting bodies at the policy level. We find that the standard justifications for patient representation, such as to achieve patient-relevant decisions, empowerment of patients, securing legitimacy of decisions, and the analogy with democracy, all fall short of supporting patient representation in this context. We conclude by briefly outlining an alternative proposal for patient participation that involves patient consultants.
The COVID-19 pandemic poses numerous – and substantial – ethical challenges to health and healthcare. Debate continues about whether there is adequate protective equipment, testing and monitoring, and about when a vaccine might become available and social restrictions might be lifted. The thorny dilemmas posed by triage and resource allocation also attract considerable attention, particularly access to intensive care resources, should demand outstrip supply.
But the “COVID fog” clouds more than the intensive care unit. The provision and uptake of non-COVID related treatment is declining, due to the de-prioritisation of some services and interventions, alongside non-COVID patients’ fears of contracting the virus; difficult conversations are being held in suboptimal circumstances; and final farewells and death rituals have been disrupted. Healthcare personnel, meanwhile, are facing moral distress and, for some, difficulties arising from undertaking new roles in unfamiliar settings.