Ethics and SARS: Learning Lessons from the Toronto ExperienceEthics and SARS: Learning Lessons from theToronto ExperienceA report bya working group of The University of Toronto Joint Centre for BioethicsToronto, CanadaThis reportis dedicated to the courageous health care workers in Toronto andaround the world who have been affected, became sick or died inthe line of duty caring for patients with SARS.Table of contentsExecutive summaryMajor ethical issues and lessons from the Toronto SARS outbreak1. When public health trumps civil liberties: the ethics of quarantine2. Naming names, naming communities: privacy of personal informationand public need to know3. Health care workers' duty to care, and the duty of institutionsto support them4.
The analysis highlights the ethical issues that officials must confront in developing a workable plan for protecting the public's health in the event of pandemic influenza. Recognizing that the tragedy of a pandemic will be exacerbated if ethical questions are ignored, specific guiding principles are suggested: preparedness.
Collateral damage: other victims of SARS5. SARS in a globalized worldAppendix: Decision Tool for Policy Makers in Addressing Future EpidemicsEnd materialSevereAcute Respiratory Syndrome (SARS) is a severe form of pneumonia.This highly contagious disease originated in Guangdong Provincein southern China in the fall of 2002, and began to spread toa number of countries via people traveling on internationalflights during February 2003. The main symptoms of SARS includeboth a high fever (over 38 degrees Celsius) and respiratoryproblems, including dry cough, shortness of breath or breathingdifficulties.
The virus appears to be transmitted through tinydroplets in the air, but also through contact with contaminatedsurfaces.ExecutivesummaryThe outbreakof Severe Acute Respiratory Syndrome (SARS) in the Toronto areaforced hard choices on people in Canada's largest urban area. Medicaland public health communities, federal, provincial and local governments,and ordinary citizens had to make difficult decisions, often withlimited information and short deadlines. Health care providers wereon the firing line, and were the most affected by the disease. 1Decision makershad to balance individual freedoms against the common good, fearfor personal safety against the duty to treat the sick and economiclosses against the need to contain the spread of a deadly disease.At times like this it is necessary to rely both on science and valuesystems to guide decisions.
The SARS outbreak raised ethical issuesfor which Canadian society was not fully prepared. Lessons needto be learned from this outbreak, to ensure preparedness not onlyagainst the spread of SARS, if it cannot be contained globally,but also for dealing with epidemics of other diseases.A working groupfrom The University of Toronto Joint Centre for Bioethics undertookto draw ethical lessons from the challenges and responses in Toronto.The group was composed of nine experts in medical ethics who camefrom such disciplines as medicine, surgery, health law, social work,teaching, nursing and epidemiology. A number of team members wereworking in directly affected hospitals, and some were involved indecision-making regarding the outbreak.SARSas a warningOver thepast 15 years, decisions had to be made about how to reactto cholera in South America, plague in India, Ebola in Zaire,mad cow disease in Europe, anthrax in the United States, AIDSthroughout the world and the annual waves of influenza.
Infact, the flu may pose the greatest future risk. There werethree influenza pandemics in the Twentieth Century, includingthe 1918-1919 Spanish Influenza, which killed more than 20million people, about double the number of people killed duringthe First World War. A number of experts expect another flupandemic within a decade.To respond tofuture health crises involving highly contagious diseases, an ethicalframework is required. In this report, we develop such a framework( see appendix), based on five major ethical issueswhere SARS forced people, particularly those in the public healthsystem, to make difficult ethical choices, and we identify 10 associatedkey ethical values. Tenkey ethical valuesIndividuallibertyPrivacyProtectionof the public from harmProtectionof communities from undue stigmatizationProportionalityDuty toprovide careReciprocityEquityTransparencySolidarityThe five majorethical issues are:1.
When publichealth trumps civil liberties: the ethics of quarantineThere are timeswhen the interests of protecting public health override some individualrights, such as freedom of movement. At such times, society hasa duty to inform people of the nature of the threat, be open inexplaining the reasons for over-riding individual freedoms and doas much as possible to assist those whose rights are being infringed.2.
Namingnames, naming communities: privacy of personal information and publicneed to knowWhile the individualhas a right to privacy, the state may temporarily suspend this privacyright in case of serious public health risks, when revealing privatemedical information would help protect public health. As a generalrule, the privacy and confidentiality of individuals should be protectedunless a well-defined public health goal can be achieved by therelease of this information.3.
Healthcare workers' duty to care and the duty of institutions to supportthemHealth careprofessionals have a duty to care for the sick. During infectiousepidemics this must be done in a way that minimizes the possibilityof their transmitting diseases to the uninfected. Institutions havea reciprocal duty to support and protect health care workers tohelp them cope with very stressful situations, and recognize theircontributions.4. Collateraldamage: other victims of SARSSevere restrictionson entry to SARS-affected hospitals meant that many people weredenied medical care, sometimes for severe illnesses.
As a result,patients in hospital, with or without SARS, and their families sufferedfrom lack of contact due to the elimination of visits for a periodof time. It is essential to maintain an equitable balance amongthe interests of those patients with or at risk of SARS, and thosewho are sick with other diseases, and need urgent treatment.5. SARS ina globalized worldSARS is a wakeupcall about global interdependence, and the increasing risk of theemergence and rapid spread of infectious diseases. There is a needto strengthen the global health system to cope with infectious diseasesin the interests of all, including those in the richer and poorernations.
This will require global solidarity and cooperation inthe interest of everyone's health.Major ethicalissues and lessons from the Toronto SARS outbreakIn analyzingeach of the five major ethical issues the team looked at the underlyingethical values, and drew lessons from how each of the five issueswas addressed. The case studies represent an amalgam of experience.In most cases, we did not use real names, in order to respect theprivacy of individuals who were not identified in media coverage.1.When public health trumps civil liberties: the ethics of quarantineThe issue'Jean,'a clerk in a medical office, is asked by Toronto's public healthdepartment to remain at home in quarantine for 10 days because ofpossible exposure to SARS.
She wants to comply, but fears this couldcost both her job and her apartment.' Michel'is in quarantine because a family member has contracted SARS, andhe may have been infected. A close family friend has died from causesnot associated with the SARS epidemic, and 'Michel' istorn between wanting to attend the funeral and his duty to respectthe quarantine order.Contagious diseases,like wars, test the limits of freedom in societies. SARS is a soberingreminder that the interests of the individual must on occasion betempered by the best interests of the community. In Toronto, thousandswere placed in quarantine, often at home, in order to protect millionsof people not only in the city but around the world from possibleexposure to a deadly disease.Ethical valuesIndividualliberty. In Canada as in many other liberal democracies, theidea of virtually unfettered personal freedom has become a stronglyheld value. In recent years, we have faced a number of serious publichealth issues-including tuberculosis, AIDS and influenza-that requireddecisions that seek to balance the rights of the individual andthe common good of society.
SARS has created an even sharper testof which rights should prevail at what time. The law allows individualrights to be overridden for the common good, under defined circumstances.The goal is to do this in an ethical and even-handed manner so thatpeople are not unfairly or disproportionately harmed by such measures.Protectionof the public from harm.
When clear, serious and imminent harmto the population is demonstrable, public health authorities havea duty to restrict certain individual rights in the interest ofthe health and well-being of the community. 2 In turn,citizens have a civic duty to comply with such restrictions forthe common good.Proportionality.When protecting many from harm is ethically necessary, and whenthe use of public health powers to achieve those goals can be justified,authorities must also protect individuals from needless coercion.Restrictions of liberty must be relevant, legitimate and necessary.They must be exercised by people with legitimate authority, andthose people should use the least restrictive methods that are reasonablyavailable. Such restrictions should be applied without discrimination.Transparency.In modern democratic societies, all legitimate stakeholders needto be properly informed about the issues, including the risks andbenefits of various options, and have input into discussions onissues that affect them, particularly those that affect their health,well-being and personal liberty.Reciprocity.Society has a duty to see that those quarantined receive adequatecare, are not kept in quarantine for excessively long periods, andare not abandoned or psychosocially isolated. There may also bea need to eliminate economic barriers, such as loss of income, whichwould otherwise prevent someone from obeying a quarantine order.
3LessonslearnedThere are timeswhen the interests of protecting public health override some individualrights, such as freedom of movement. At such times, society hasa duty to fully inform people of the situation, be open in explainingthe reasons and do as much as possible to assist those whose rightsare being infringed.Under the ethicalvalue of proportionality, authorities have the right to impose quarantineand isolation, but it is preferable, as was the case in Toronto,to use voluntary measures first. When people are fully informed,and see that they are being treated as fairly as possible, it islikely that voluntarism will prevail in times of emergency. In fact,most people in Toronto cooperated with restrictions. More coercivemeasures (such as detention orders or surveillance technology) shouldbe reserved for those cases where non-compliance is documented,and potential harm to others is anticipated. Evidence indicatesthat most people can deal with a quarantine of about 10 days.
Incases of incubation periods longer than 10 days, the enforcementof quarantine becomes more difficult. In the Toronto SARS outbreak,a 10-day quarantine was used.Under the ethicalvalue of transparency, public health authorities must regularlycommunicate the reasons for the imposition of quarantine or isolation,the nature of the potential harm, attendant risks to various groupsof people, and publicly communicate the necessity for various restrictionson personal liberty.Under the ethicalvalue of reciprocity, people placed in quarantine and isolationshould be assisted to overcome the hardships imposed. This willalso facilitate compliance. The assistance should include ensuringthat they have access to food, help with problem solving aroundshelter for other family members, alternative medical care, jobprotection and phone calls for support and comfort. In the Torontocase, volunteer agencies and organizations such as Meals on Wheels,the Red Cross and the Toronto Public Health department, have helpedpeople in home quarantine to live as normal a life as possible.Governments indicated that people are not to suffer employment lossor discrimination, and that waiting times for benefits from employmentinsurance would be reduced to recognize the hardship imposed byquarantine.Quarantineand isolationBoth termsrefer to restrictions of movement and physical separationfrom others of people who may have been exposed to a contagiousdisease. Quarantine is applied to people who show no symptomsof the disease. Isolation refers to those showing symptoms.2.Naming names, naming communities: privacy of personal informationand public need to knowThe issue'June,'a nurse at a downtown Toronto hospital that was affected by SARS,is feeling a bit unwell, but her temperature, a key sign of SARS,is normal.
She weighs the risk of possibly having the disease againstthe costs of losing pay if she does not show up, and worries aboutplacing a burden of extra work on her colleagues. 'June'takes the GO commuter train to work. Medical officials fear shemight have SARS, and have infected a group of commuters, spreadingthe disease into the community, where it might be impossible tocontrol. They choose not to name her on the grounds that this wouldserve no purpose because she has not tested positive for SARS, butthey do warn people on that train car to be checked in case theydevelop SARS.In contrast,the name of the woman who was identified as accidentally bringingSARS to Canada is made public. Kwan Sui-chu, 78, and her husbandvisit Hong Kong in February, where she contracts the disease. Uponher return home to Toronto, she passes it to her family, startingthe chain of contamination.
She dies at home, but her son goes tohospital for treatment of fever and a cough, and spreads the diseaseto other people, beginning a series of infections in the city.The issue ofnaming names applied across the spectrum from the individual toglobal levels. Health and government officials had to weigh thebenefits and harms of exposing people, communities and whole countriesto discrimination.
In the case of China, the government decidednot to release information about the seriousness of the SARS outbreakuntil the spring, several months after the initial outbreak in GuangdongProvince. In Toronto, publicly linking of SARS with someone whohad travelled from China stigmatized the Chinese community, andled to a precipitous fall in business for Chinese enterprises, particularlyrestaurants. When Toronto was put on a do-not-visit list by theWorld Health Organization, it had a huge economic impact in termsof lost visits and tourism.Ethical valuesPrivacy andconfidentiality of health information.
Individuals have a rightto control the amount of information about themselves to which othershave access. Health authorities are bound to protect confidentialityas much as possible. However, the right to privacy is not absolute.The challenge is to balance the costs of releasing information aboutindividuals and communities against the benefits of reducing a publichealth risk.Protectionof the public health. As is the case with quarantine, protectionof the public health may limit the individual's right to privacyand confidentiality of health information.Proportionality.In order to release private and confidential information, healthofficials must be able to argue that the protection of public healthcould not be achieved by less intrusive measures, and this willnot often be the case.
For example, in the case of 'June'public health authorities were right to announce that a patientwith SARS traveled on the commuter train in a particular car ata particular time, and to encourage others in that car to contactpublic health authorities. There would have been no added protectionof the public health by releasing the person's name or photograph.Transparency.Honest reporting about an emerging epidemic and the numbers of peopleaffected does not violate an individual's right to privacy of medicalinformation. Arguably, the reluctance of Chinese authorities torelease information about the seriousness of SARS to the World HealthOrganization prolonged the epidemic.Protectionof communities from undue stigmatization. Particular cautionshould be taken not to unduly stigmatize communities through therelease of information.Lessons learnedThere was atendency to name names more freely at the start of the Toronto outbreak,but authorities became more protective of people's privacy, whenit became evident that there was no public good served in releasingnames of those affected. It appeared that the Chinese communitywas being stigmatized without producing any public health benefit.As a generalrule, the privacy and confidentiality of individuals should be protectedunless a well-defined public health goal can be achieved by therelease of this information to the general public.3.
Healthcare workers' duty to care, and the duty of institutions to supportthemThe issue'Mary,'a nurse in the Intensive Care Unit, is afraid that when she goesto work she will have to care for SARS patients and may become infected.Her husband asks her to call in sick, pleading that it is her dutyas the mother of three small children not to risk giving them SARS.' Mary' feels torn.
She feels her primary responsibilityis to do everything in her power to protect her children. At thesame time, 'Mary' has a strong commitment to her profession,and the family needs her income.
She has studied hard to becomea staff nurse, and is aware of the importance the hospital placeson good attendance. Her salary is affected by calling in sick. Shealso wants to support her colleagues on the front lines by goingto work.For the firsttime in more than a generation, Toronto health care practitionerswere forced to weigh serious and imminent health risks to themselvesand their families against their obligation to care for the sick.This generation of clinicians had entered their profession in anera when there was little expectation of facing deadly infectiousdiseases that had no ready cure.
Suddenly, a large number of healthcare workers, particularly nurses and doctors, faced tough choicesabout how much risk to take. They had to put their lives at riskto help others. Dozens of medical workers, most of them nurses,caught SARS during their work. The most public example of the sacrificeby a health care worker was the untimely and tragic death of Dr.Carlo Urbani, who was infected in Vietnam.SARS imposedgreat stresses on health care workers.
They feared contagion forthemselves and their families, and being shunned by others in casethey were infectious. They suffered from disrupted routines, andloss of work for those who were quarantined or were unable to workbecause their hospitals had cut back on admitting non-SARS cases.Many health professionals had to wear cumbersome and very uncomfortableequipment to protect themselves, causing discomfort and hamperingtheir ability to work.
This also reduced the human contact withsick and dying patients.EthicalvaluesDuty to care.Health care professionals have a duty to care based on several ethicalconsiderations. The first is 'virtue ethics' which meansbeing of good character. The health care professional is seen asa 'good person' who may be relied upon to demonstratealtruism by putting the patient's needs foremost. When they entertheir profession, physicians take an oath that they will be competent,and will use their skills in caring for the sick.As one memberof this panel put it, 'when we sign on as health care providerswe must accept the risks. Firefighters don't get to pick whetherthey will attend at a particularly bad fire, and cops don't getto select which dark alleys they walk down. To me it would be unethicalto deny care even if there is 'somewhere else' that could take thatpatient.' Reciprocity.Just as health care professionals have a duty to care, society andinstitutions have a reciprocal duty to assist these professionals.This includes providing information for staff so they can fullyunderstand the risks, and having policies that support safety practices.These policies should avoid penalization from either a financialor other standpoint for events, such as loss of work that is notthe fault of the employees.
As part of this behaviour, institutionsmust practice transparency, and this will foster trust in the organizationsby their staff.Lessons learnedWhile healthcare professionals have a duty to care for the sick, this must betempered by a duty to care for themselves in order to remain wellenough to be able to carry out their duties. 4 To extendthe analogy introduced above, the fireman would not knowingly jumpinto a burning inferno. Where to draw the line between role-relatedprofessional responsibilities and undue risk is a question our workinggroup struggled with, but did not fully resolve.Health careinstitutions have a duty to provide the supports that enable employeesto do their jobs effectively and as safely as possible. Informationneeds to be shared in a timely way so that health care workers arefully informed, and enjoy a climate of trust in their place of employment.Institutionsneed clear guidelines in place so employees know what is expectedof them, and what help they may expect. In addition, employmentpolicies need to ensure that staff are rewarded rather than penalizedfor following safe practices such as staying home when they areill. In future cases, hospitals might be able to make better useof staff in helping isolated patients make contact with their families.For example, instead of sending health care workers home with nowork, they could be given the job of phoning patients and theirfamilies to provide information and support.Finally, thereis a duty for the public and persons in authority to recognize theheroism of front-line medical workers during the SARS outbreak.In Toronto, most health workers responded courageously4.Collateral damage: other victims of SARSThe issue'Anne'has breast cancer. Her surgery is postponed during the SARS outbreak,increasing anxiety in her and her family about the spread of herdisease.'
Tom',who at 58 has valiantly fought a brain tumour for 13 years, includingthree major brain surgeries, is admitted to the hospital with anurgent but unrelated condition. He starts to deteriorate, and itappears that the inevitable victory by his tumour is close at hand.' Jane', his wife and soul-mate, who has been faithfullyand constantly by his side through good times and bad, is not allowedinto the hospital to be with her very sick husband.
She waits franticallyby the phone, and the surgeon spends what little time he can spareto keep her informed.There was agreat amount of 'collateral damage' to a wide range ofpeople who did not have SARS. Many people with other serious conditionshad surgeries cancelled because some hospitals were considered contaminatedareas, and some of these people died.
Some of those patients diedbefore receiving treatment. At the University Health Network alone,which includes Toronto General, Toronto Western and Princess Margarethospitals, 1,050 surgical procedures were cancelled because of SARS.This included transplants, cancer and heart surgeries, hip and kneereplacements and lens implants.
In addition, there were cancellationsof radiation, chemotherapy, dialysis, physiotherapy and other treatments.The strict 'no visitors' policies during the early partof the outbreak meant that both SARS and non-SARS patients in hospitalswere cut off from their families and friends. Those who were admitted,with or without SARS, suffered loss of contact and emotional supportfrom family and friends as hospitals closed their doors to visitors. 5EthicalvaluesEquity.In the SARS emergency, authorities faced hard choices in decidingwhich medical services to maintain and which to place on hold. Theyhad to weigh risks, benefits and opportunity costs. It is necessaryfor such hard decisions to be made in a fair manner, including appropriateaccess to limited resources. There needs to be equity between SARSand non-SARS patients.Lessons learnedIn the caseof an epidemic, it is important to control the spread of the disease,but as much attention should be paid to the rights of the non-infectedpatients who need urgent medical care.
There may be as many peoplewho died from other illnesses and could not get into hospital asthere were who died from SARS.Equity is required in the amount of attention given to a wide arrayof people, including patients with and without SARS. Accountabilityfor making reasonable decisions, transparency and fairness are expected.There is a need to communicate accurate information to the public,putting the risks and benefits of various strategies and decisionsin focus.5.SARS in a globalized worldThe issueIn Guangdongprovince in rural China it is early winter and 'Mr. Li,'a farmer, comes down with a severe respiratory infection. His sonleaves for Beijing, carrying the SARS microbe and its descendantson a journey that will span the world. One of its major destinationsis Toronto, where thousands will be forced into quarantine to stopthe spread of SARS.In Geneva,the World Health Organization weighs the risks of SARS spreadingfrom Toronto. WHO issues an unprecedented travel advisory in April,warning people not to go to Toronto unless necessary, in order tominimize the risk that Toronto could export the disease to countriesnot equipped to handle it. One week later, WHO lifts the travelwarning, saying that the magnitude of the problem in Toronto hasdecreased, and there is no evidence that the city is exporting SARScases.In a numberof institutions, scientists race to break the genetic code of theSARS virus, and then to patent it.
The way the patents are exercisedwill have global implications for who can get access to such results,and to resulting products, such as vaccines.Globalizationis associated with increases in travel and transportation, communicationsand the sharing of cultures. As a result of the growing web of interconnections,microbes have an easier ride than ever. In the Middle Ages, it tookthree years for the plague to spread from Asia to the western reachesof Europe. The SARS virus, crossed from Hong Kong to Toronto inabout 15 hours.Ethical valuesSolidarity.One of the great challenges of the 21st century is to understandthe interconnections between globalization and health, and to findways of narrowing global health disparities in different regions.A new global health ethic based on solidarity could help make theworld a more stable place. Solidarity means feeling one has commoncause with others who are less powerful, wealthy, or healthy. Infectiousdiseases can spread in either direction between poor, rural areasand rich urban areas, anywhere in the world.There is alsoa need for transparency, honesty and good communications on healthissues at a global level so that people and nations can take appropriatesteps to protect themselves.Lessons learnedIt is clearthat while health is treated as a national, regional or local responsibility,it must be seen and acted upon as a global public good. This callsfor new ways of thinking and acting.
Distinctions between domesticand foreign policy have become blurred, and public health, evenin the most privileged nations, is closely linked to health anddisease in impoverished countries. Now more than ever, local actionmust be linked to global action. We need a new mindset to improvehealth and deal with threats to health globally.There is alsoa need for transparency, honesty and good communications on healthissues. It is no longer acceptable for countries to hide healthinformation that can protect others. Such sharing is part of maintaininga global public good of health protection. A new governance mechanismis needed for global surveillance of infectious diseases.
The worldshould consider strengthening the role of the World Health Organization,giving it the right to gather information, communicate it, and tohelp countries deal with outbreaks.There is alsoa need to strengthen the global health system to cope with infectiousdiseases. Countries invest large amounts in national laboratoriesfor disease control, but relatively little in international organizationssuch as the WHO.There are somepressing global needs.
Countries need adequate public health laboratories,surveillance and epidemiological capacity, information systems fordata gathering, storage and analysis, and health communication capabilitieslinked to international obligation to report. The world needs standardizationand harmonization of standards and criteria. It also needs to increaseand strengthen the capacity to respond to outbreaks, especiallyin developing countries. This requires training in public health,and the resources to put enough health workers into place.SARSand intellectual property rightsThe patentingof materials and processes is an important part of globalization,and SARS rapidly became part of that process. The genome sequenceof the virus thought to be responsible for SARS was publishedby the British Columbia Cancer Agency, based on samples takenfrom SARS patients in Toronto.
Several groups are seekingto patent the genetic code of the virus. The implicationswill be seen over time. A patent holder may commercializethe research findings in order to make diagnostic productsin the short term, and perhaps therapeutic agents and vaccinesin the longer term.
The patent holder may also opt to makethe patented findings freely available for the public good.Few jurisdictions have intellectual property regimes thatare set up to address ethical or policy issues. So long asthe patent criteria are met, a patent will be issued.Appendix: DecisionTool for Policy Makers in Addressing Future Epidemics1. Civilliberties and quarantine2. Namingnames and the right to privacy3. Dutyto care4. GlobalconcernsIndividualLibertyIndividualrights can be overridden for common good.
AbstractPublic health emergencies, such as hurricanes and the constant threat of an influenza pandemic, present public health responders with many ethical issues and little time to think them through. We interviewed 13 responders in the Epidemiology Section of the North Carolina Division of Public Health to learn how they have identified and addressed ethical issues in public health emergencies affecting the state and to identify potential means of improving those processes for North Carolina and other states.
The Epidemiology Section staff demonstrated an awareness of several ethical issues in public health emergencies and an ability to identify and address issues through group interactions. However, few study participants in the section had received any training in public health ethics. Perhaps for this reason, the range of ethical issues they identified excluded several mentioned in the Public Health Code of Ethics. Moreover, their ethical decision making could be enhanced by a more detailed understanding of the ethical issues they named. We recommend seven practical steps that the Epidemiology Section can take to improve their ability to identify and address ethical issues in a public health emergency.
The recommendations are likely relevant to many state, city, and county public health departments throughout the United States. Public health emergencies present ethical challenges in at least three ways: (1) the stakes are high because often many people are affected all at once, (2) there is little time to deliberate, and (3) the emergency may have incapacitated essential resources, such as roads or electrical power. In a hurricane, for example, a loss of electrical power will make it hard to communicate by television or radio with the people at risk. A common outcome with ethical implications is disproportionate damage or harm experienced by a vulnerable population. When this happens, their trust in the government is diminished (or their distrust is reinforced). The population may then be less responsive to public health emergency responders in the next event and to all those who protect the health of the public day to day.Public health emergency responders must regard their ability to identify and address ethical issues as essential skills.