Tuberculosis and the Ethics of Shared Responsibility

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Tuberculosis and the Ethics of Shared
Responsibility

• Ross E.G. Upshur,
• BA(HONS), MA, MD, MSc, CCFP, FRCPC
• Canada Research Chair in Primary Care Research
• Professor
• Department of Family and Community Medicine
• University of Toronto
• 16TH ANNUAL CONFERENCE OF THE UNION-NORT?H
  AMERICA REGION
• San Antonio
• February 2012

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Learning objective

• Participants will be able to
• Make clinical and programmatic decisions which
  will serve tuberculosis patients based on an
  understanding of the relationship between ethical
  values, human rights and disease control

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The Challenge

• Responding to drug-resistant tuberculosis is one
  of the most profound challenges facing global
  health.
• Our response to the emergence of drug-resistant
  TB is profoundly ethical as it raises issues of
  how justice and human rights are realized in our
  collective response to a disease. It also
  underscores how the global community responds to
  its most disadvantaged members.

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What does it mean to know a disease?

• What is disease?
• Standard nomenclatures or approaches to knowing
  in medicine
• On any standard, I argue we know more about TB
  than any other human affliction.
• The question Why has this not made a difference?

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Why be concerned with ethics?

• Decision-makers and clinicians need a moral
  compass
• Difficult decisions will have to be made.
• How, why, when by whom?
• Accountability and Justification essential.

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Why has tuberculosis been neglected by ethicists?

• Infectious Diseases no longer considered relevant
• Ethics concerned with high technology
• The other
• Complexity

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Why is ethics important to Tuberculosis control?

• Tuberculosis raises unique ethical issues
• Proper treatment and programmatic decisions
  require integration of normative and empirical
  considerations
• Challenge traditional and familiar concepts (e.g.
  autonomy, physician-patient confidentiality)
• Universal vulnerability

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Integration of Levels of Ethical Reflection

• Personal Ethics
• Clinical Ethics
• Professional Ethics
• Organizational Ethics
• Public Health Ethics
• Global Health Ethics

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Which Values?

• Autonomy/ Respect for persons
• Beneficence
• Non-maleficence
• Justice

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Which Values?

• Reciprocity
• Solidarity
• Social Justice
• Trust
• Common Good Arguments

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Human Rights

• Enshrine ethical norms into legally enforceable
  instruments
• Internationally agreed upon sets of principles
  and norms contained in treaties, conventions,
  declarations, resolutions etc
• Government obligations to respect, protect and
  fulfill these obligations
• Rights law defines what governments can do to us,
  cannot do to us and should do for us

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TB Patients Bill of Rights

• Rights to Care, Dignity, Information, Choice,
  Confidence, Justice, Organization, Security
• Responsibility to share information, follow
  treatment, contribute to community health,
  solidarity

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Ethical Processes

• Ethical Decision-Making Processes are
• Open and Transparent
• Reasonable
• Inclusive
• Responsive
• Accountable
• Address issues of power imbalance

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• Drug-resistant TB, particularly the emergence of
  XDR-TB, is evidence of a new form of regression
  we have taken the curable and made it nearly
  incurable. The tendency has been to blame the
  most vulnerable and powerless the patients who
  were unable, for a multitude of reasons, to
  follow treatment through to completion. It is
  time to recognize that we collectively bear
  responsibility for this.

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• The serious task of stopping the progression to
  complete drug resistance is also a collective
  responsibility of all involved in health care. If
  we cannot manage a disease as well known as TB,
  we have little justification to be stewards of
  the significant amount of resources given to
  health care globally.