Nursesʼ experiences of ethical preparedness for catastrophic public health emergencies and health care disasters; a systematic review of qualitative evidence

Associate reviewers Dr Elizabeth Crock, PhD, BSc, Grad Dip Ed, RN Clinical Nurse Consultant HIV/AIDS Royal District Nursing Service, Melbourne Contact: [email protected] Telephone: +61 0410 560 314 Commencement Date: February 2011 Estimated Completion Date: December 2011 REVIEW OBJECTIVES/QUESTIONS: Question: This review aims to answer the following specific question: What are nurses' experiences of preparing for and managing the ethical challenges posed by catastrophic public health emergencies and health care disasters? Review Purpose/Objectives: The purpose of this systematic review is to systematically review and synthesise research literature reporting nurses' experiences of ethical preparedness for dealing with catastrophic public health emergencies and health care disasters and the ethical quandaries that may arise during such events. BACKGROUND: The outbreak of the severe acute respiratory syndrome (SARS) in 2003 provided the world with salutary lessons on the need to pay closer attention to the necessity, role and impact of ethics frameworks for guiding decision-making in public health emergencies.1-3 As University of Toronto Joint Centre for Bioethics Pandemic Influenza Working Group4(p.4) observed in the aftermath of SARS: Leaders in governments and health care systems had not previously developed an ethical framework or held prior consultations to deal with the suite of ethical issues forced on them by SARS. […] SARS showed there are costs of not having an agreed-upon ethical framework, including loss of trust, low morale, fear and misinformation. SARS taught the world that if ethical frameworks had been more widely used to guide decision-making, this would have increased trust and solidarity within and between health organizations. Two years later, in the aftermath of Hurricane Katrina, the need for clear ethics guidance during a catastrophic mass casualty event was likewise highlighted when a New Orleans physician and two nurses were arrested and charged with second-degree murder in relation to the ‘mercy killings’ of four elderly patients.5-7 None of the four patients in question were expected to die immediately from natural causes, were in pain, or had consented to the lethal dose of drugs they were given. The patients were euthanised because the team believed they had ‘no realistic chances of surviving in a stranded, incapacitated hospital’.5 The case raised provocative questions about what might lead a health care professional to consider euthanasia in such a situation. It also raised the more specific questions of whether the doctor and two nurses in this case had been properly prepared to make the life and death decisions they made, and, if not, what - if anything - could have prepared them?5-7 Nurses and extreme emergencies Nurses constitute the largest workforce within the healthcare system and are pivotal to any coordinated response to a public health emergency or health care disaster involving mass casualties. Like their co-workers, they are also at the sharp end of having to make ‘tough moral choices’ about rationing, restrictions and responsibilities in the provision of life sustaining care in a mass casualty event. Despite this, little is known about nurses’ ethical preparedness for the unique ethical challenges that such scenarios pose and what specific ethical issues they may have to deal with (and how they deal with them) during a mass casualty event. Although national and international nursing organisations have formulated codes of ethics and position statements outlining the role and responsibilities of nurses in disaster preparedness, these documents do not provide clear guidance for ethical decision-making and conduct in extreme situations.8 Although there is growing body of research on nurses clinical and emotional preparedness for mass casualty events, the ethical dimensions of disaster nursing have tended to be assumed or treated as being ‘self evident’, without supporting evidence.9 Because of this, little is known about: the ethical changes that nurses may face during a public health emergency or health care disaster how to prepare nurses for ethical responses in extreme conditions whether it is even possible to prepare for catastrophic mass casualty events (i.e. to ‘prepare for the unpreparable’) how much ethical preparedness is ‘enough’ whether the future behaviour of nurses during a catastrophic public health emergency or health care disaster can ever be ensured (Will nurses always be willing to care when their own personal safety, life and health may be at risk? And is it reasonable to expect them to care?) how much personal risk and self-sacrifice can be decently expected and required of nurses during mass casualty events. Ethics and extreme events Public health emergencies and health care disasters pose ethical problems not normally experienced in everyday civilian health care.2,10 As a catastrophe evolves, health care services can become overwhelmed and practitioners can find themselves unable realistically to provide the standard and level of care that they are otherwise used to providing.11-12 Moreover, in disaster scenarios, certain behaviours that would ordinarily be regarded as unethical may be seen as justified in the crisis situation at hand.13 Indeed, as health service providers grapple with what Wynia14 terms the ‘three R's’(rationing, restrictions and responsibilities), tragic choices encompassing ethical tradeoffs will invariably have to be made. On this point Campbell and associates15(p.77) warn that, when disaster strikes: At progressively more extreme levels, the decisions will be increasingly harsh; morally agonizing to those who must make and execute them - but in the end, morally deadening. In order to sustain what healthcare services they can during a disaster and to avoid a catastrophic failure to provide any care at all, accepted standards of care are altered and adapted ‘to allow for rapid changes in practice’.16,12 The ethical preparedness of health professionals to operationalise altered standards of care (also called crisis standards of care) is, however, open to question. So too is the ethical preparedness of health professionals to operationalise altered/crisis standards of professional ethics. Issues yet to be comprehensively considered include: removing patients from life supports without their consent (there simply will not be time to follow the usual procedures), sacrificing the values and preferences of individual patients for the interests of the community, triaging patients to palliative disaster care when their lives could be saved through active treatment, and other similar deviations necessitated by the extreme conditions under which health care providers are working.13-14,17 Stroud and others 18 explain that the ethical issues raised by questions of rationing, restrictions, responsibilities and altered standards of care in mass casualty events are both challenging and fundamental. They challenging because they call into question and contradict ‘many of the values we hold dearest, such as providing each patient with the best available care’.18(p.51) They explain that the challenges at issues are also fundamental because: if we don't act in accordance with our ethical principles, the repercussions both for individuals and the society after the fact will be enormous. They are fundamental because our ethical principles serve as the foundation of our laws. They are fundamental because people will only act and sacrifice if they believe they are operating in an ethical system, and that individuals are being treated with fairness and transparency in the full view of the law. In addition, they are fundamental, quite frankly, because many of the decisions contemplated will be made with imperfect information—they will be best guesses. Those guesses, in the absence of firm evidence, will need to be made based on a shared ethical construct.18 Emergency preparedness Public health emergencies and health care disasters underscore the need for health care providers and facilities to plan and prepare for mass casualty events.19-22 Although health care facilities are an essential component of an emergency response, as the events of SARS, Hurricanes Katrina and Rita, and other disasters (e.g., earthquakes, tsunamis, and volcanic eruptions, terrorism attacks) have all demonstrated, most health care services have been poorly prepared for and/or are insufficiently developed for dealing with mass casualty events. In order to mitigate this situation correctives encompassing planning, training, practising skills, and procuring equipment have been operationalised.23 Despite this, there has been little attention given to the question of the ethical preparedness of health care providers. Ethical preparedness Public health emergencies and health care disasters underscore the need for ‘advance moral preparation’ 24-25 and ‘preventive ethics’.1 One reason for this relates to what Gostin 2(p.572) calls the ‘public health paradox’: since public health decisions will often have to be made without the benefits of full scientific knowledge, the only safeguard ‘is the adoption of ethical values’ in formulating and implementing such decisions. A second important reason why advance ethics preparation is needed relates to the unpredictable nature of catastrophic events and the kinds of choices that people will make when faced with extreme uncertainty, vulnerability and fear. While people (health professionals included) might sincerely believe and predict that they will act ethically in a crisis situation, and believe that generally they are ‘more likely to engage in selfless, kind and generous behaviours than their peers’26(p.861), research has shown that actual ethical conduct is often at odds with these beliefs.27 As Tenbrunsel and others explain 27(p.3): People believe they will behave ethically in a given situation, but they don't. They then believe they behaved ethical when they didn't. It's no surprise, then, that most individuals erroneously believe they are more ethical than the majority of their peers. Research suggests that when people are faced with danger or extreme situations, they will abandon ‘the illusion that certain values are infinitely important’ and make moral compromises.28 When these compromises are framed as ‘tragic tradeoffs’, people will acquiesce to the violation of the moral boundaries at issue, which ordinarily would be considered unthinkable.28 This has also been termed ‘ethical fading’ where by self-deception - encompassing ‘language euphemisms, the slippery-slope of decision making, errors in perceptual causation, and constraints induced by representations of the self’ - plays a fundamental role in people overestimating their disposition toward being ethical and underestimating their capacity to engage in unethical behaviour.29 Being ethical in extreme situations can be challenging because it may not clear what the ‘right thing to do’ is. As Kirsch and Moon 30(p.921) reflected, when considering the question of ‘unforgiving triage’ during the aftermath of the Haitian earthquake disaster: ‘We have no answers. There are no answers’. Ethical preparedness is problematic because there are significant barriers to its realisation. Barriers may include but are not limited to: the lack of an operational definition of what ethical preparedness is, a lack of reliable criteria for measuring and assessing ethical preparedness, and the lack of consensus national and international standards and guidelines on ethical decision making in public health emergency health care disaster scenarios. Compounding this problem is the lack of congruity between national emergency plans and health professional codes of ethics and conduct. The ethical quandaries associated with mass casualty events need to be considered in advance. This includes giving focused attention to questions of social justice (particularly in regard to the rescue and care of vulnerable populations), duty to care, ethics guidance (both substantive and procedural values), and civic engagement.31-32 There is also a need for further conceptual and empirical research on professional codes and legislation, and the strength of these to motivate altruism and override self interest.33-34 Although existing ethical codes and guidelines are instructive, they are generally unable to resolve such questions as: ‘If providers are at risk, should they stay and treat patients? Will they choose to stay? And how will ethics and other factors affect their decisions?’35 Nurses ethical preparedness Nurses' actual experiences and opinions in regard to public health emergency and health care disaster ethics have not been systematically investigated. Although nurses' experiences of ethical issues (e.g. willingness to care when faced with personal danger) have been captured in research reports on nurses actual experiences and opinions on disaster nursing, these have tended to be characterised as ‘personal issues’, not ethical issues per se (see, for example, Slepksi 23; in some reports they have simply been overlooked altogether (see, for example, O'Boyle et al 36; Secor-Turner & O'Boyle37). In these works an assumption has perhaps been made that ethics is self-evident. Ethics is never ‘self-evident’, however, and in order to be understood a systematic investigation of is nature, content and application is warranted. Key terms and concepts Central to this review are the key terms: Public health emergency Public health emergency preparedness Health care disaster Health care disaster ethics Altered/crisis standards of care. For the purposes of this review, these terms are defined as follows: Public health emergency: ‘A disaster is the sudden occurrence of a calamitous, usually violent, event resulting in substantial material damage, considerable displacement of people, a large number of victims and/or significant social disruption. This definition excludes situations arising from conflicts and wars, whether international or internal, which give rise to other problems in addition to those considered in this paper. From the medical standpoint, disaster situations are characterised by an acute and unforseen imbalance between the capacity and resources of the medical profession and the needs of survivors who are injured, whose health is threatened, over a given period of time’.38 Public health emergency preparedness: is the capability of the public health and health care system, communities, and individuals, to prevent, protect against, quickly respond to, and recover from health emergencies, particularly those whose scale, timing, or unpredictability threatens to overwhelm routine capabilities. Preparedness involves a coordinated and continuous process of planning and implementation that relies on measuring performance and taking corrective action.22 Health care disaster: ‘any incident that overwhelms the resources of the health care system, locally and regionally, and the effects are expected to last for more than 96 hours’.39 Health care disaster ethics: ‘a set of principles and values that serve to direct the duties, obligations and parameters of the delivery of health care in a disaster situation. Disaster ethics is the study of what ought to be done in a disaster situation’.39 Altered/crisis standards of care: ‘a substantial change in usual healthcare operations and the level of care it is possible to deliver, which is made necessary by a pervasive (e.g., pandemic influenza) or catastrophic (e.g., earthquake, hurricane) disaster. This change in the level of care delivered is justified by specific circumstances and is formally declared by a state government, in recognition that crisis operations will be in effect for a sustained period. The formal declaration that crisis standards of care are in operation enables specific legal/regulatory powers and protections for healthcare providers in the necessary tasks of allocating and using scarce medical resources and implementing alternate care facility operations.40 INCLUSION CRITERIA: Types of Participants: The review will consider publications that include nurses registered or authorised under a given country's state of emergency provisions to practice in jurisdictions in which a public health emergency (e.g. pandemic influenza) or sudden-onset mass casualty health care disaster (e.g. flood, hurricane, earthquake, tsunami, volcanic eruption, terrorist attack) have occurred, or may occur. Phenomena of interest: This review will examine the phenomenon of nurses' experiences of preparing for and/or managing ethical issues arising during a public health emergency or health care disaster. Consideration will be given to, but not be limited to nurse preparation for and management of ethical issues associated with: development of local public health emergency (including pandemic influenza) and sudden-onset health care disaster plans provision of first health care contact for the general public personal protection and correct use of safety equipment providing front line clinical care providing community and primary health care assistance with containment measures triaging in a range of settings, including general practices, community health centres, and local hospitals maintaining infection control vaccinations informing the public work attendance. Types of studies: This review will consider studies that focus on qualitative data including, but not limited to, designs such as phenomenology, hermeneutics, naturalistic inquiry, ground theory, exploratory descriptive, case study, ethnography, action research, case study and feminist research. SEARCH STRATEGY The search strategy aims to find both published and unpublished English language studies. No date limits will be set on the searches and each search will be performed from the beginning date of each database until the present. A three-step search strategy will be utilised in each component of this review. An initial limited search of MEDLINE and CINAHL will be undertaken followed by analysis of the text words contained in the title and abstract, and of the index terms used to describe article. A second search using all identified keywords and index terms will then be undertaken across all included databases. Thirdly, the reference list of all identified reports and articles will be searched for additional studies. The databases to be searched include: CINAHL with full text Medline with full text PsychINFO Health Reference Center Academic Expanded Academic ASAP Academic Search Complete Global Health Informit Health Policy Reference Center ISI Web of Knowledge JSTOR Philosophers Index NLM and NIH Bioethics Information Sources Social Services Abstracts Proquest Health and Medical Complete European Information Network - Ethics in Medicine and Biotechnology ScienceDirect The search for unpublished studies and ‘grey’ literature will include: ‘Grey Literature Report’ from New York Academy of Medicine ProQuest and for Health & Social Research for Research and A of in Literature Information Index to database and health of professional nursing, public health and emergency management organisations keywords to be used will Ethics Nursing ethics Public health Disaster planning disasters change events Preparedness research research research for will be by two reviewers for prior to in the review using from the and Review that arise between the reviewers will be through or with a data will be from included in the review using the data from the and Review The data will include specific about the study and of to the review question and specific research where possible be using the and Review This will the or of to a set of statements that that through the to their and these on the of in are then to a in order to a set of that can be used as a for is not possible the will be in None

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