Work of a paediatric bioethics centre during the COVID-19 pandemic first phase

ObjectivesDecisions with an ethical component have been controversial during the COVID-19 pandemic, whether leaked intensive care unit (ICU)-rationing documents, transfer of people to care-homes to ‘protect the National Health Service’ or the duty to treat patients despite inadequate personal protective equipment. To counter criticism of ethics per se, and to help those planning ethics support we describe the practical work of a children’s hospital bioethics team in supporting children, families and clinicians during this unprecedented period.Design/settingThree phases of activity: (i) preparation: we composed several documents to support/guide hospital teams and, together with colleagues, provided them to regional inpatient, community and hospice settings. We adapted existing mechanisms to combat workforce moral injury; (ii) activity (March–June 2020): was highest in our rapid response service where children/families consider difficult treatment decisions with medical teams. Education provided ‘pandemic webcasts’ on decision-making and broader child-health concerns. Staff support was essential, especially for those deployed to overwhelmed local adult ICUs. Research ascertained young people’s views on the pandemic; (iii) reflection: focussed on (a) research about future re-deployment to adult services and minimisation of moral distress/injury, (b) remote video-conferencing—parents’/participants’ experience/ability to consider complex ethical issues and (c) role of faith/non-faith in society’s recovery and children’s views.Main outcome/conclusionsOur bioethics team’s role during the pandemic included: case reviews via video-conferencing, many involving innovative therapy for severely unwell children with COVID-19/Paediatric-Inflammatory-Multisystem Syndrome-Temporally associated with SARS-CoV-2 together with their parents; processes to protect healthcare staff from moral harm and research/educational activity focused on paediatric-specific ethical arising during the pandemic.

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‘Who Ya Gonna Call …?’ Ethical and legal dilemmas in specialist children centres and district general hospitals

Clinical Ethics ◽

10.1177/14777509211036649 ◽

2021 ◽

pp. 147775092110366

Author(s):

Harika Avula ◽

Mariana Dittborn ◽

Joe Brierley

Keyword(s):

Intensive Care ◽

Clinical Ethics ◽

Ethical Issues ◽

General Setting ◽

Daily Practice ◽

Paediatric Intensive Care ◽

Ethical Challenges ◽

Legal Cases ◽

Ethics Support ◽

The Uk

The field of Paediatric Bioethics, or ethical issues applied to children's healthcare, is relatively new but has recently gained an increased professional and public profile. Clinical ethics support to health professionals and patients who face ethical challenges in clinical practice varies between and within institutions. Literature regarding services available to paediatricians is sparse in specialist tertiary centres and almost absent in general paediatrics. We performed a mixed-methods study using online surveys and focus groups to explore the experiences of ethical and legal dilemmas and the support structures available to (i) paediatric intensive care teams as a proxy for specialist children's centres and (ii) paediatricians working in the general setting in the UK. Our main findings illustrate the broad range of ethical and legal challenges experienced by both groups in daily practice. Ethics training and the availability of ethics support were variable in structure, processes, funding and availability, e.g., 70% of paediatric intensive care consultants reported access to formal ethics advice versus 20% general paediatricians. Overall, our findings suggest a need for ethics support and training in both settings. The broad experience reported of ethics support, where it existed, was good – though improvements were suggested. Many clinicians were concerned about their relationship with children and families experiencing a challenging ethical situation, partly as a result of high-profile recent legal cases in the media. Further research in this area would help collect a broader range of views to inform clinical ethics support's development to better support paediatric teams, children and their families.

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Ethical Considerations In ICU Preparations For Viral Epidemics

Studia Universitatis Babeş-Bolyai Bioethica ◽

10.24193/subbbioethica.2021.spiss.94 ◽

2021 ◽

Vol 66 (Special Issue) ◽

pp. 142-143

Author(s):

Cristina Petrișor ◽

◽

Sebastian Tranca ◽

◽

Keyword(s):

Clinical Picture ◽

Health Care Professionals ◽

Administrative Support ◽

Moral Distress ◽

Ethical Issues ◽

Ventilatory Support ◽

H1n1 Influenza ◽

Modern World ◽

Medical Systems ◽

Infected People

"Intensive Care Units (ICUs) admit patients with the most severe forms of the diseases, viral ARDS included. Since the 2009 H1N1 influenza outbreak, ICU preparations and triage have been recommended. The novel COVID-19 clinical picture resembles influenza in terms of organ dysfunction which may start with hypoxemic breathing insufficiency and ultimately, a possibility of evolution towards multiple organ failure. Its current clinical picture is not new for intensivists. However, there are several important differences as far as we know now: there is overall human susceptibility to become infected and nobody can be specifically protected by vaccination. This fact led to large numbers of infected people all over the world, overwhelming medical systems. Almost 10% of COVID-19 infections would be qualified for ICU admittance and ventilatory support. The main ethical issues in ICUs, in time of viral epidemics are: lack of free ICU beds, free ventilator machines, pressures on providing aggressive treatments for people with low chances of survival, dealing with terminally ill patients, high degrees of burnout in the medical team, reporting errors and inadequate behavior of other medical staff, lack of adequate protective equipment, as well as lack of administrative support. All these facts lead to moral distress and high burnout incidences. Administrative preparations, prioritization and triage are important aspects to consider. In conclusion, we all see that the modern world is not prepared enough to face such challenges and from these situations we, all (health care professionals, providers, population and authorities) should learn important personal and professional lessons. "

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Managing ethical issues in patient care and the need for clinical ethics support

Australian Health Review ◽

10.1071/ah14034 ◽

2015 ◽

Vol 39 (1) ◽

pp. 44 ◽

Cited By ~ 3

Author(s):

Evan Doran ◽

Jennifer Fleming ◽

Christopher Jordens ◽

Cameron L Stewart ◽

Julie Letts ◽

...

Keyword(s):

Patient Care ◽

Clinical Ethics ◽

Ethical Issues ◽

Public Hospitals ◽

Cross Sectional Survey ◽

Convenience Sample ◽

Clinical Ethics Support ◽

Ethical Environment ◽

Ethics Support ◽

A Priority

Objective To investigate the range, frequency and management of ethical issues encountered by clinicians working in hospitals in New South Wales (NSW), Australia. Methods A cross-sectional survey was conducted of a convenience sample of 104 medical, nursing and allied health professionals in two NSW hospitals. Results Some respondents did not provide data for some questions, therefore the denominator is less than 105 for some items. Sixty-two (62/104; 60%) respondents reported occasionally to often having ethical concerns. Forty-six (46/105; 44%) reported often to occasionally having legal concerns. The three most common responses to concerns were: talking to colleagues (96/105; 91%); raising the issue in a group forum (68/105; 65%); and consulting a relevant guideline (64/105; 61%). Most respondents were highly (65/99; 66%) or moderately (33/99; 33%) satisfied with the ethical environment of the hospital. Twenty-two (22/98; 22%) were highly satisfied with the ethical environment of their department and 74 (74/98; 76%) were moderately satisfied. Most (72/105; 69%) respondents indicated that additional support in dealing with ethical issues would be helpful. Conclusion Clinicians reported frequently experiencing ethical and legal uncertainty and concern. They usually managed this by talking with colleagues. Although this approach was considered adequate, and the ethics of their hospital was reported to be satisfactory, most respondents indicated that additional assistance with ethical and legal concerns would be helpful. Clinical ethics support should be a priority of public hospitals in NSW and elsewhere in Australia. What is known about the topic? Clinicians working in hospitals in the US, Canada and UK have access to ethics expertise to help them manage ethical issues that arise in patient care. How Australian clinicians currently manage the ethical issues they face has not been investigated. What does this paper add? This paper describes the types of ethical issues faced by Australian clinicians, how they manage these issues and whether they think ethics support would be helpful. What are the implications for practitioners? Clinicians frequently encounter ethically and legally difficult decisions and want additional ethics support. Helping clinicians to provide ethically sound patient care should be a priority of public hospitals in NSW and elsewhere in Australia.

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Fostering medical staff reflection on the technological alienation of parents in the NICU

Clinical Ethics ◽

10.1177/14777509211061849 ◽

2021 ◽

pp. 147775092110618

Author(s):

Abram Brummett ◽

Annie B. Friedrich

Keyword(s):

Medical Staff ◽

Moral Distress ◽

Ethical Issues ◽

Treatment Refusal ◽

Healthy Newborn ◽

Incurable Condition ◽

Life Sustaining Treatment ◽

Terminal Diagnosis ◽

The Relationship

We describe a case of parents refusing a tracheostomy for an otherwise healthy newborn. The refusal was not honored because permitting the refusal would have violated state law, which required a child to have a qualifying condition (e.g. a terminal diagnosis, permanent unconsciousness, incurable condition with severe suffering) to remove or withhold life-sustaining treatment. However, this case strained the relationship between the parents and medical staff, who worried about sending the newborn home with a tracheostomy where she was not wanted. While many ethical issues arise in treatment refusal cases like this, we focus on the opportunity for ethicists to help the medical staff reflect on the technological alienation of the parents, which may help foster empathy, reduce moral distress, and strengthen the quality of the doctor-parent-patient triad.

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Objectives and outcomes of clinical ethics services: a Delphi study

Journal of Medical Ethics ◽

10.1136/medethics-2018-105203 ◽

2019 ◽

Vol 45 (12) ◽

pp. 761-769

Author(s):

Leah McClimans ◽

Geah Pressgrove ◽

Emmaling Campbell

Keyword(s):

Delphi Study ◽

Clinical Ethics ◽

Moral Distress ◽

Medical College ◽

Ethics Support ◽

Starting Point ◽

The Usa ◽

American Society ◽

Level Of Agreement

ObjectivesTo explore the objectives and outcomes most appropriate for evaluating clinical ethics support services (CESs) in the USA.MethodsA three-round e-Delphi was sent to two professional medical ethics listservs (Medical College of Wisconsin-Bioethics and American Society for Bioethics and Humanities) as well as 19 individual experts. The survey originally contained 15 objectives and 9 outcomes. In round 1, participants were asked to validate the content of these lists. In round 2, we had 17 objectives and 10 outcomes, and participants were asked to rank them for appropriateness in a top 10 list of objectives and a top 5 list of outcomes.ResultsParticipants came to a high(at least 70%) level of agreement on seven objectives: mediate, educate, develop policy, improve the moral quality of a decision or action, counsel, create a moral space and manage moral distress. Participants came to a moderate (at least 51%) level of agreement on three objectives: empower, awareness of ethics and preventative ethics. Participants also came to a moderate (at least 51%) level of agreement on five outcomes: ethical justification, transformation of institution, improvement of quality of life, principled consensus and satisfaction with the expertise of a CES.ConclusionThis e-Delphi identified 10 objectives and 5 outcomes that are a good starting point for developing outcome measures to evaluate CESs in the USA, while reminding us of the diversity of perspectives still evident in the field.

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Ethics support for GPs: what should it look like?

Journal of Primary Health Care ◽

10.1071/hc14999 ◽

2016 ◽

Vol 8 (1) ◽

pp. 75 ◽

Cited By ~ 1

Author(s):

Monika Clark-Grill

Keyword(s):

Primary Care ◽

General Practice ◽

Support Services ◽

Ethics Education ◽

Ethical Issues ◽

Daily Basis ◽

Complex Nature ◽

Individual Interviews ◽

Ethics Support ◽

Professional Guidance

ABSTRACT INTRODUCTION Ethics support services for hospital clinicians have become increasingly common globally but not as yet in New Zealand. However, an initiative to change this is gathering momentum. Its slogan ‘Clinical ethics is everyone’s business’ indicates that the aim is to encompass all of health care, not just the hospital sector. General Practitioners (GPs) deal with ethical issues on a daily basis. These issues are often quite different from ethical issues in hospitals. To make future ethics support relevant for primary care, local GPs were interviewed to find out how they might envisage ethics support services that could be useful to them. METHODS A focus group interview with six GPs and semi-structured individual interviews with three GPs were conducted. Questions included how they made decisions on ethical issues at present, what they perceived as obstacles to ethical reflection and decision-making, and what support might be helpful. FINDINGS Three areas of ethics support were considered potentially useful: Formal ethics education during GP training, access to an ethicist for assistance with analysing an ethical issue, and professional guidance with structured ethics conversations in peer groups. CONCLUSION The complex nature of general practice requires GPs to be well educated and supported for handling ethical issues. The findings from this study could serve as input to the development of ethics support services. KEYWORDS General practice; primary care; ethics; support; education

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The ethical implications of verbal autopsy: responding to emotional and moral distress

BMC Medical Ethics ◽

10.1186/s12910-021-00683-7 ◽

2021 ◽

Vol 22 (1) ◽

Author(s):

Alex Hinga ◽

Vicki Marsh ◽

Amek Nyaguara ◽

Marylene Wamukoya ◽

Sassy Molyneux

Keyword(s):

Public Health ◽

Emotional Distress ◽

Verbal Autopsy ◽

Moral Distress ◽

Ethical Issues ◽

Community Members ◽

Research Staff ◽

Autopsy Data ◽

The Right ◽

Death Data

Abstract Background Verbal autopsy is a pragmatic approach for generating cause-of-death data in contexts without well-functioning civil registration and vital statistics systems. It has primarily been conducted in health and demographic surveillance systems (HDSS) in Africa and Asia. Although significant resources have been invested to develop the technical aspects of verbal autopsy, ethical issues have received little attention. We explored the benefits and burdens of verbal autopsy in HDSS settings and identified potential strategies to respond to the ethical issues identified. Methods This research was based on a case study approach centred on two contrasting HDSS in Kenya and followed the Mapping-Framing-Shaping Framework for empirical bioethics research. Data were collected through individual interviews, focus group discussions, document reviews and non-participant observations. 115 participants were involved, including 86 community members (HDSS residents and community representatives), and 29 research staff (HDSS managers, researchers, census field workers and verbal autopsy interviewers). Results The use of verbal autopsy data for research and public health was described as the most common potential benefit of verbal autopsy in HDSS. Community members mentioned the potential uses of verbal autopsy data in addressing immediate public health problems for the local population while research staff emphasized the benefits of verbal autopsy to research and the wider public. The most prominent burden associated with the verbal autopsy was emotional distress for verbal autopsy interviewers and respondents. Moral events linked to the interview, such as being unsure of the right thing to do (moral uncertainty) or knowing the right thing to do and being constrained from acting (moral constraint), emerged as key causes of emotional distress for verbal autopsy interviewers. Conclusions The collection of cause-of-death data through verbal autopsy in HDSS settings presents important ethical and emotional challenges for verbal autopsy interviewers and respondents. These challenges include emotional distress for respondents and moral distress for interviewers. This empirical ethics study provides detailed accounts of the distress caused by verbal autopsy and highlights ethical tensions between potential population benefits and risks to individuals. It includes recommendations for policy and practice to address emotional and moral distress in verbal autopsy.

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Ethics in Palliative Care

10.1093/med/9780199313945.001.0001 ◽

2018 ◽

Author(s):

Robert C. Macauley

Keyword(s):

Palliative Care ◽

End Of Life ◽

Moral Distress ◽

Clinical Medicine ◽

Ethical Issues ◽

Ethical Dilemmas ◽

Age Groups ◽

Life Threatening Illness ◽

Unique Nature ◽

The Right

No specialty faces more diverse and challenging ethical dilemmas than palliative medicine. What is the best way to plan ahead for the end of life? How should physicians respond when patients refuse treatments likely to be beneficial or demand treatments not likely to be? Who makes medical decisions for patients who are too ill to decide for themselves? Do patients have the “right to die” (and, if so, what exactly does that mean)? Other ethics texts have explored these issues but often from an academic perspective that overlooks the practical realities of clinical medicine. Conversely, medical textbooks frequently lack sufficient philosophical depth to fully explore the complexities of these issues. This complete guide to the ethics of palliative care combines clinical experience with philosophical rigor to provide a comprehensive analysis of this fascinating field. Using relevant case studies, core subjects such as intensive symptom management at the end of life, physician-assisted dying, and palliative sedation are examined from historical, legal, clinical, and ethical perspectives. Whereas pediatric issues are often an afterthought in palliative care textbooks, this guide explores the unique nature of ethical dilemmas in the prenatal, neonatal, and adolescent age groups. Other important topics such as neuro-palliative care, organ donation, research, and moral distress are also covered in detail. Written with clinical nuance for medical professionals—and clear language as well as a glossary for lay readers—this guide offers all readers an opportunity to explore and understand the fascinating ethical issues facing patients suffering from life-threatening illness.

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The role of online ethics consultation on mental health

Nursing Ethics ◽

10.1177/0969733020906596 ◽

2020 ◽

Vol 27 (5) ◽

pp. 1261-1269

Author(s):

Kayoko Ohnishi ◽

Teresa E Stone ◽

Takashi Yoshiike ◽

Kazuyo Kitaoka

Keyword(s):

Mental Health ◽

Moral Distress ◽

Ethical Issues ◽

Physical Restraint ◽

Ethics Consultation ◽

Mental Health Nurses ◽

Ethical Problems ◽

Improving Patient Care

Background Nurses experience moral distress when they cannot do what they believe is right or when they must do what they believe is wrong. Given the limited mechanisms for managing ethical issues for nurses in Japan, an Online Ethics Consultation on mental health (OEC) was established open to anyone seeking anonymous consultation on mental health practice. Research objective To report the establishment of the Online Ethics Consultation and describe and evaluate its effectiveness. Ethical considerations The research was conducted in accordance with the Declaration of Helsinki. Research design This evaluation describes the outcomes of 5 years of operation of the Online Ethics Consultation on mental health in Japan Participants The Online Ethics Consultation received 12 emails requesting consultation. Consultees included mental health nurses, psychiatrists, and service users. Findings The most common questions directed to the service were about seclusion and physical restraint. Response time from receipt of email to sending a reply was between 1 and 14 days. Despite the disappointing number of consultations, feedback has been positive. Discussion The Online Ethics Consultation was established to assist morally sensitive nurses in resolving their ethical problems through provision of unbiased and encouraging advice. Mental health care in Japan has been less than ideal: long-term social hospitalization, seclusion, and restraint are common practices that often lead to moral distress in nurses and the questions received reflected this. The head of the Online Ethics Consultation sent a supportive, facilitative response summarizing the opinions of several consultants. Conclusion This study provides key information for the establishment of an online ethics resource the adoption of which has the potential to improve the experience of nurses, allied health and clients of mental health services. This paper has implications for services concerned with improving patient care, managing nurses’ moral distress, building ethics into decision-making.

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The ethics of interprofessional collaboration

Nursing Ethics ◽

10.1177/0969733012468466 ◽

2013 ◽

Vol 20 (4) ◽

pp. 426-435 ◽

Cited By ~ 35

Author(s):

Joyce Engel ◽

Dawn Prentice

Keyword(s):

Health Care ◽

Health Care Providers ◽

Moral Distress ◽

Ethical Issues ◽

Interprofessional Collaboration ◽

Care Providers ◽

Quality Health Care ◽

Health Care Outcomes ◽

Quality Health ◽

Interprofessional Competencies

Interprofessional collaboration has become accepted as an important component in today’s health care and has been guided by concerns with patient safety, quality health-care outcomes, and economics. It is widely accepted that interprofessional collaboration improves patient outcomes through enhanced communication among health-care providers and increased accessibility to services. Although there is a paucity of research that provides confirmatory evidence, interprofessional competencies continue to be incorporated into the curricula of health-care students. This article examines the ethics of interprofessional collaboration and ethical issues that arise from the mainstream adoption of interprofessional competencies and the potential for moral distress in nursing.

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