Unpacking the Clinician s Duty to Care During SARS: An Interdisciplinary Research Study

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1 Unpacking the Clinician s Duty to Care During SARS: An Interdisciplinary Research Study Randi Zlotnik Shaul LL.M., P.h.D. Bioethicist, Population Health Sciences The Hospital for Sick Children

2 All on the Same Page Duty to Care: Duty to provide professional services to provide health care as appropriate Not a duty to experience the sentiment of caring.

3 Objectives To be familiar with research study: Ethical Challenges in the Preparedness and Response for SARS: An Interdisciplinary Research Study To appreciate the ethical and legal challenges associated with a health care worker s duty to care To appreciate implications for future communicable disease emergencies.

4 Outline Introduction to Subject Matter The Research Study Background Objectives Methodology Analysis Duty to Care Focus Take-Away Message.

5 Introduction Outbreak of severe acute respiratory syndrome (SARS) raised ethical issues for which Toronto was unprepared Tested limits of the health care system knowledge, policies, resources Provided series of new ethical challenges warranting research.

6 Introduction - Duty to Care In TO health care workers (HCWs) demonstrated commitment and dedication to caring for people with SARS Sometimes significant risk to HCWs own health (and their dependents) Some HCWs, considered risks to self and dependents beyond professional duty to care.

7 Audience Survey No identifiable responses will be shared outside this room Questions to be answered with a show of finger(s) and eyes closed 1. Under dire circumstances clinicians should have minimal self regard and pursue duty to care at potential cost to their own lives OR 2. Unreasonable to demand extreme heroism, and to demand that lives of HCWs, children & families of HCWs be held hostage to professional duties 1 2

8

9 Stepping up to the Plate Collaboration between researchers from several Toronto hospitals and University of Toronto s Joint Centre for Bioethics Prepared interdisciplinary report on the ethical issues and values most important for an analysis of ethical dimensions of the SARS in Toronto Report submitted to National Advisory Committee on SARS and Public Health Cited in Canada s Renewal of Public Health in Canada 2004 report.

10 Background Full report examined 5 key ethical issues raised in management of the outbreak and proposed a value based conceptual framework U of T Joint Centre for Bioethics SARS Group: Ethics and SARS: Lessons from Toronto BMJ 2003

11 Study Background CIHR funded study builds on report and paper. Brings together study team employing interdisciplinary and multidisciplinary approach Resulting knowledge applicable to future communicable disease emergencies i.e. natural pandemic influenza or human made bio-terrorism

12 Specific Objectives Will combine conceptual scholarship & empirical research to address the following specific objectives:

13 Objectives 1. To analyze the ethics of quarantine and the use of restrictive means to achieve public health goals and characterize stakeholder views on the effectiveness and justifiability of such measures

14 Objectives 1. To analyze the ethics of quarantine 2. To analyze effects of the collateral damage of SARS particularly in context of priority setting

15 Objectives 1. To analyze the ethics of quarantine 2. Effects of the collateral damage of SARS priority setting 3. To analyze duty to care of health care professionals and reciprocal obligations of institutions

16 Objectives 1. The ethics of quarantine 2. Effects of the collateral damage of SARS priority setting 3. Duty to care of health care professionals and reciprocal obligations of institutions 4. To analyze global health issues roles and responsibilities of national and transnational organizations.

17 Study Relevance Results relevant to clinicians, public health professionals, regulators and wide range of health care decision makers Will refine JCB 2003 framework to address ethical implications of infectious disease for the future Valuable in health care planning at local and national levels.

18 Methodology - design Research is in the form of case studies an empirical inquiry that investigates a contemporary phenomenon within its real-life context (Strauss and Corbin 1998) Case studies structured yet flexible approach, historically used to describe individual institutions and their actions (Lincoln and Guba 1985).

19 Methodology Sampling decisions will be made in concert with data analysis & continue until no new concepts arise during analysis of successive interviews theoretical saturation (Richardson 1994). Sample will include stakeholder mix of HCWs with high patient contact, employees with low patient contact, patients who had SARS, members of the general public and of professional colleges.

20 Knowledge Translation and Dissemination Results to be submitted to scientific peer reviewed publications Major findings will be communicated through media release strategy Results to be communicated to the World Health Organization Presentations will be made at scientific conferences Results will be posted on JCB webpage Reports will be made available to relevant professional bodies.

21 Duty to Care Issues my focus Whether health care providers have an ethical and legal obligation to treat patients with despite risk of infection The nature of the duty of health care institutions to provide support that enables employees to carry out their duties.

22 Duty to Care - Methodology Will study professional codes of ethics for disciplines of medicine, nursing, respiratory therapy and social work for guidance to their members Will study relevant law Will interview members of various stakeholder groups Will interview key informants at University Health Network, Scarborough Grace Hospital and Sunnybrook and Women s College Health Science Centre.

23 Research Questions for Qualitative Interviews Are there limits to duty to care? What factors influence people in arriving at these limits? What factors are considered as limits to the duty to care?

24 Interview Questions cont d Are these limits different for different professionals (e.g. physician as compared to the librarian in a hospital) How do health care HCWs arrive at these limits? What can organizations do to assist HCWs to fulfill their duty to care?

25 Data Analysis Interview data will be transcribed and analyzed by coding strategies Interview data will be analyzed by comparative analysis techniques looking at similarities and differences between responses.

26 Concordance How consistent are statutes and case law with the code of ethics? How consistent are the perspectives of clinicians, the public, the regulators? How consistent are the law and codes of ethics with stakeholder perspectives?

27 Law Ethics Stakeholder Perspectives

28 Law Ethics Stakeholder Perspectives

29 Law preliminary analysis Many areas relevant to understanding the clinician s duty to care 1. Occupational health and safety 2. HCW-patient relationship 3. Fiduciary duty 4. Legitimate expectations

30 Occupational Health and Safety Any worker has the right to refuse work when he or she has reason to believe that the physical condition of the workplace is likely to endanger his or her safety For some this right is limited Workers with responsibility to protect public safety cannot refuse unsafe work if the danger is a normal part of their job or if refusal will endanger the life, health or safety of another person i.e. firefighters, police officers, those involved in the operation of a hospital.

31 Physician-Patient Relationship If doctor-patient relationship exists legal and ethical duty to care When may duty be terminated? Reasonable patient opportunity to arrange alternative Are there always alternatives to specialized pediatric services? Cannot abandon.

32 Fiduciary Duty Someone bound to act in the best interests of the person s beneficiary (Michael Ng 2003) Fiduciaries may not put themselves in a situation where their interests conflict with the duties of their fiduciary position Implications for duty to care?

33 Legitimate Expectations The time has come to close the book on infectious diseases. We have basically wiped out infection in the United States. Surgeon General William Stewart 1967

34 Legitimate Expectations Would it be acceptable for HCW to say that this level of danger to self and family was not a legitimate expectation for this chosen profession? Could firefighter or police officer legitimately make the same claim?

35 Early Data - Clinicians I think that we have a duty to perform to whatever level we can still maintain our own safety I think this refusal or reluctance of health professionals to care for SARS patients was perhaps one of the most troubling things that emerged from the epidemic need informed consent by health care worker in that they are consenting to enter the profession, despite the inherent risks - that has to be explicit.

36 Early Data - Public They have to report to work, even during an infectious outbreak, because that s part of their job. They must have known back in medical school, in nursing college and whatever, that this type of thing is probably going to happen at some point in their careers I don t think they have the right to say: look I will treat routine patients that pose no health threat to me, but the minute there is a danger to me, I refuse to treat that patient.

37 Institutional Duty of Reciprocity Health care institutions have duty to provide staff with the best possible supports, resources and information to protect all employees.

38 Very Preliminary Trends From initial look at themes, seem to find health care workers describing a somewhat limited duty to care Greater call for almost unlimited duty to care from public interviews Recognition of institutional reciprocity.

39 Next Steps Complete study Knowledge translation and dissemination Build on this work with future research into addressing inconsistencies and applying similar study design to accountability of clinician-researchers and research hospitals.

40 Take-Away Message Much to learn from SARS experience Value of multidisciplinary insights and perspectives Health law, policies and codes of ethics were not created with SARS in mind Unlikely neat mapping of laws, codes and stakeholder perspectives Need for reconciliation of values and stakeholder engagement.

41 Thank you.

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