An international medical ethics think-tank says that all-important public cooperation and the coordination of public officials at all levels requires open and ethical decision making.
The Influenza Pandemic Working Group at the University of Toronto Joint Centre for Bioethics today recommended a 15-point ethical guide for pandemic planning, based in part on experiences and study of the Severe Acute Respiratory Syndrome (SARS) crisis of 2003.
The report says plans to deal with a flu pandemic need to be founded on commonly held ethical values. People need to subscribe in advance to the rationale behind such choices as: the priority recipients of resources, including hospital services and medicines; how much risk front line health care workers should take; and support given to people under restrictions such as quarantine. Decision makers and the public need to be engaged so plans reflect what most people will accept as fair and good for public health.
"A shared set of ethical values is the glue that can hold us together during an intense crisis," says Peter Singer, M.D., Director of the University of Toronto Joint Centre for Bioethics (JCB), which undertook the advisory report. "A key lesson from the SARS outbreak is that fairness becomes more important during a time of crisis and confusion. And the time to consider these questions and processes in relation to a threatened major pandemic is now."
The report concludes that flu pandemic plans universally need an ethical component that address four key issues:
1. Health workers' duty to provide care during a communicable disease
outbreak.
2. Restricting liberty in the interest of public health by measures such as
quarantine;
3. Priority setting, including the allocation of scarce resources such as medicines;
4. Global governance implications, such as travel advisories.
Health care workers duty to care
The SARS crisis exposed health care systems to hard ethical choices that rapidly arose. Dozens of health care workers, for example, were infected through their work and some died. Other failed to report for duty to treat SARS patients out of fear for their own health or that of their family. A flu pandemic, where there may be no absolute protection or cure, would put far greater pressures on health care systems around the world.
"Workers will face competing obligations, such as their duty to care for patients and to protect their own health and that of families and friends," says JCB member Ross Upshur, M.D., Director, Primary Care Research Unit, Sunnybrook and Women's College Health Sciences Centre. "Medical codes of ethics in various countries provide little specific guidance on how to cope with this very real dilemma. Professional colleges and associations need to provide this kind of particular guidance in advance of an infectious disease outbreak crisis."
Governments and hospitals also need to provide for the health and safety of workers, and for the care of those who fall ill on duty. This might include an insurance fund for life and disability to cover health care workers who become sick or die as they place themselves in harm's way.
The Human Costs of Restrictive Measures
Officials need to provide support for those in quarantine, cut off from family, friends, work, shopping and possibly medical care for other aliments, the report says. The public should also be made aware of the need for quarantine and the consequences of non-compliance.
"The decision to use restrictive measures need to be made in an open, fair and legitimate manner. The public has a right to know the compelling public health reasons for curtailing rights and restricting normal activities. If quarantines are used, those affected need adequate care and job protection. Preventing financial hardship is important to obtaining full compliance from the public," says Dr. Upshur.
Measures to protect against stigmatization and to safeguard the privacy of individuals and/or communities affected by quarantine also should be part of pandemic preparedness plans the report recommends.
Allocating Scarce Resources, Medicines
All countries will face scarcities of medicines, equipment and health care workers during a pandemic, according to the group. Governments, hospitals and health regions should publicize a clear rationale for giving priority access to anti-viral medicines and vaccines to particular groups (e.g., front line health workers, children, decision-makers).
Advance planning ought to include criteria for resource allocation decisions, created in consultation with the general public.
Travel Bans
The World Health Organization (WHO) has warned that if the H5N1 strain of bird flu mutates and infects people it could reach all continents in less than three months. The WHO would likely impose regional travel restrictions in hopes of slowing the spread of the disease.
However such decisions can have major economic impacts. Canada, and Toronto in particular, suffered millions in economic losses when the WHO advised international travelers against all nonessential travel because of SARS.
Decisions about travel restrictions need to be clearly justified and the process must be transparent the report says.
At the same time, the WHO relies on individual countries for reporting disease outbreaks. Such surveillance may be beyond the capacity of many developing countries. The developed world should continue to invest in the surveillance capacity and the overall public health infrastructures of developing countries.
The WHO recommends that ethical issues be a consideration in the planning process for an influenza pandemic. Canada's province of Ontario has incorporated this framework into its plan.
"Other jurisdictions and nations should assess their pandemic plan against this ethical framework and these recommendations," says Dr. Singer.
"Looking ahead, we can say that if the pandemic strikes it will cause great hardship, but societies will struggle through. They will be better able to do so if they have general agreement on an ethical approach. Afterwards, history will judge today's leaders on how well they took decision on the ethical challenges they faced in the midst of the crisis."
Ten substantive values to guide ethical decision-making for a pandemic influenza outbreak
Individual liberty
In a public health crisis, restrictions to individual liberty may be necessary to protect the public from serious harm. Restrictions to individual liberty should:
Protection of the public from harm
To protect the public from harm, health care organizations and public health authorities may be required to take actions that impinge on individual liberty.
Decision makers should:
Proportionality
Proportionality requires that restrictions to individual liberty and measures taken to protect the public from harm should not exceed what is necessary to address the actual level of risk to or critical needs of the community.
Privacy
Individuals have a right to privacy in health care. In a public health crisis, it may be necessary to override this right to protect the public from serious harm.
Duty to provide care
Inherent to all codes of ethics for health care professionals is the duty to provide care and to respond to suffering. Health care providers will have to weigh demands of their professional roles against other competing obligations to their own health, and to family and friends. Moreover, health care workers will face significant challenges related to resource allocation, scope of practice, professional liability and workplace conditions.
Reciprocity
Reciprocity requires that society support those who face a disproportionate burden in protecting the public good, and take steps to minimize burdens as much as possible. Measures to protect the public good are likely to impose a disproportionate burden on health care workers, patients and their families.
Equity
All patients have an equal claim to receive the health care they need under normal conditions. During a pandemic, difficult decisions will need to be made about which health services to maintain and which to defer. Depending on the severity of the health crisis, this could curtail not only elective surgeries, but could also limit the provision of emergency or necessary services.
Trust
Trust is an essential component of the relationships among clinicians and patients, staff and their organizations, the public and health care providers or organizations, and among organizations within a health system.
Decision makers will be confronted with the challenge of maintaining stakeholder trust while simultaneously implementing various control measures during an evolving health crisis. Trust is enhanced by upholding such process values as transparency.
Solidarity
As the world learned from SARS, a pandemic influenza outbreak, will require a new vision of global solidarity and a vision of solidarity among nations. A pandemic can challenge conventional ideas of national sovereignty, security or territoriality. It also requires solidarity within and among health care institutions.
It calls for collaborative approaches that set aside traditional values of self-interest or territoriality among health care professionals, services or institutions.
Stewardship
Those entrusted with governance roles should be guided by the notion of stewardship. Inherent in stewardship are the notions of trust, ethical behaviour and good decision-making. This implies that decisions regarding resources are intended to achieve the best patient health and public health outcomes given the unique circumstances of the influenza crisis.
Five procedural values to guide ethical decision-making for a pandemic influenza outbreak
Reasonable
Decisions should be based on reasons (i.e., evidence, principles and values) that stakeholders can agree are relevant to meeting health needs in a pandemic influenza crisis. The decisions should be made by people who are credible and accountable.
Open and transparent
The process by which decisions are made must be open to scrutiny, and the basis upon which decisions are made should be publicly accessible.
Inclusive
Decisions should be made explicitly with stakeholder views in mind, and there should be opportunities to engage stakeholders in the decision-making process.
Responsive
There should be opportunities to revisit and revise decisions as new information emerges throughout the crisis. There should be mechanisms to address disputes and complaints.
Accountable
There should be mechanisms in place to ensure that decision makers are answerable for their actions and inactions. Defence of actions and inactions should be grounded in the 14 other ethical values proposed above.
Summary of Recommendations
An ethical guide for pandemic planning
1. National, provincial/state/territorial, and municipal governments, as well as the health care sector, should ensure that their pandemic plans include an ethical component.
2. National, provincial/state/territorial, and municipal governments, as well as the health care sector, should consider incorporating both substantive and
procedural values in the ethical component of their pandemic plans.
Four key ethical issues
Issue 1: Health workers' duty to provide care during a communicable disease outbreak
1. Professional colleges and associations should provide, by way of their codes of ethics, clear guidance to members in advance of a major communicable disease outbreak, such as pandemic flu. Existing mechanisms should be identified, or means should be developed, to inform college members as to expectations and obligations regarding the duty to provide care during a communicable disease outbreak.
2. Governments and the health care sector should ensure that:
a. care providers' safety is protected at all times, and providers are able to
discharge duties and receive sufficient support throughout a period of
extraordinary demands; and
b. disability insurance and death benefits are available to staff and their families adversely affected while performing their duties.
3. Governments, hospitals and health regions should develop human resource strategies for communicable disease outbreaks that cover the diverse occupational roles, that are transparent in how individuals are assigned to roles in the management of an outbreak, and that are equitable with respect to the distribution of risk among individuals and occupational categories.
Issue 2: Restricting liberty in the interest of public health by measures such as quarantine
1. Governments and the health care sector should ensure that pandemic
influenza response plans include a comprehensive and transparent protocol for the implementation of restrictive measures. The protocol should be founded upon the principles of proportionality and least restrictive means, should balance individual liberties with protection of public from harm and should build in safeguards such as the right of appeal.
2. Governments and the health care sector should ensure that the public is aware of:
a. the rationale for restrictive measures;
b. the benefits of compliance; and
c. the consequences of non-compliance.
3. Governments and the health care sector should include measures in their
pandemic influenza preparedness plans to protect against stigmatization and to
safeguard the privacy of individuals and/or communities affected by quarantine or other restrictive measures.
4. Governments and the health care sector should institute measures and
processes to guarantee provisions and support services to individuals and/or
communities affected by restrictive measures, such as quarantine orders,
implemented during a pandemic influenza emergency. Plans should state in advance what backup support will be available to help those who are
quarantined (e.g., who will do their shopping, pay the bills and provide financial support in lieu of lost income). Governments should have public discussions of appropriate levels of compensation in advance, including who is responsible for compensation.
Issue 3: Priority setting, including the allocation of scarce resources, such as
vaccines and antiviral medicines
1. Governments and the health care sector should publicize a clear rationale for giving priority access to health care services, including antivirals and vaccines, to particular groups, such as front line health workers and those in emergency services. The decision makers should initiate and facilitate constructive public discussion about these choices.
2. Governments and the health care sector should engage stakeholders (including staff, the public and partners) in determining what criteria should be used to make resource allocation decisions (e.g., access to ventilators during the crisis, and access to health services for other illnesses), should ensure that clear rationales for allocation decisions are publicly accessible and should provide a
justification for any deviation from the pre-determined criteria.
3. Governments and the health care sector should ensure that there are formal mechanisms in place for stakeholders to bring forward new information, to appeal or raise concerns about particular allocation decisions and to resolve disputes.
Issue 4: Global governance implications, such as travel advisories
1. The World Health Organization should remain aware of the impact of travel recommendations on affected countries, and should make every effort to be as transparent and equitable as possible when issuing such recommendations.
2. Federal countries should utilize whatever mechanisms are available within their system of government to ensure that relationships within the country are adequate to ensure compliance with the new International Health Regulations.
3. The developed world should continue to invest in the surveillance capacity of
developing countries, and should also make investments to further improve the overall public health infrastructure of developing countries.
University of Toronto Joint Centre for Bioethics Innovative. Interdisciplinary. International. Improving health care through bioethics.
The JCB is a partnership among the University of Toronto and 15 health care organizations. It provides leadership in bioethics research, education, and clinical activities. Its vision is to be a model of interdisciplinary collaboration in order to create new knowledge and improve practices with respect to bioethics. The JCB does not advocate positions on specific issues, although its individual members may do so.
For more information: http://www.utoronto.ca/jcb/