Ethical Dilemmas for E-Health

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Ethical Dilemmas for E-Health

• David Zitner
• Director Medical Informatics
• Dalhousie University
• Kimberly Tomasson
• Ethicist, University of Victoria

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E-HealthBenefits or ethical morass?

• Holding the promise of beneficence, information
  technologies are purported to increase access,
  improve quality, and decrease the costs of care.
  Aspects of these technologies, however, create
  conflicts with the ethical principles of
  autonomy, fidelity, and justice.

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Apparent Ethical Dilemmas Impede Progress!
Framing ethical dilemmas differently leads to
different conclusions An understanding of the
various ways to frame ethical dilemmas helps
resolve them, and surprisingly will increase
the speed of adoption of worthwhile information
technology
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E-Health Holds Promise for Good

• Barriers
• Privacy
• Security
• Deontological views
• Personal Information is a public good for public
  benefit?
• Utilitarian
• Appropriate personal information is a public good
  for public benefit?

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Developing a Course for Technically Advanced HI
Students

• When does attending to a particular ethical value
  produce a result which is bizarre, or
  inappropriate or fails to meet needs of one or
  another constituency?

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Perspectives

• Utilitarian orientations focus on trying to
  achieve the greatest amount of good for the
  greatest number of people
• Deontological perspectives view ethical issues
  from a right-duty perspective and attempt to
  resolve moral conflict by balancing competing
  interests. (Tommason, U.Vic)
• Sometimes these views conflict

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Failing to address ethical conflict leads to
paralysis

• Caring for patients vs. caring for
  community-Informed consent!
• Are duties to individual patient or to community?
  What information should be aggregated? Should we
  defer implementing EMRs because some are fearful
  that the information will be misused? Is the
  question philosophical (deontological) or
  empirical (utilitarian)

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Dilemmas and Predicaments

• Parentalism vs. Autonomy
• Adequate information about
• Access and results can lead to anxiety
• Access and results is necessary for personal
  choice.

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Public Health Issues

• Disease surveillance
• Health Promotion
• Treating predilictions
• Certain information will benefit some and clearly
  harm others

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Constituency ViewsWhere is the Obligation?

• Public
• Patients
• Health Services Administrators
• Provider Organizations
• Policy Makers
• Providers

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Sometimes doing right doesnt seem to fit with
a utilitarian model

• 300,000 for Fabrys Disease
• Insurance cost 6.00/year per person if 20
  people in Nova Scotia need the drug
• The cost of paying for this represents only a
  small fraction of N.S. drug costs per person
• 6/457.56 1.3

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Should we pay for expensive drugs if they are
useful?

• Cost of covering Fabrys disease represents only
  1.3 of total drug costs (possibly less).
• Is this compatible therefore with both a
  deontological model and a utilitarian model?

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Looking for Scarcity but Finding abundance?

• 1993-1998 12 increase in spending on
  antidepressants yet some drug manufacturers
  state the drugs arent effective.
• How IT and Tracking will help us build on
  abundance.

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Contemporary Issues

• Line ups- few for things we all can normally
  afford
• Longer for expensive procedures
• Payment issues
• Is there a benefit to beneficiaries of medicare
  contributing when they receive service (As Tommy
  Douglas, Romanow and Kirby all suggest). How?
• Or is health care a right which everyone must
  get free of cost regardless of consequences on
  other community spending.
• What if this means we are all subject to
  illegible scrawls on scraps of paper?

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Health care cooperatives (user pay) to adopt
technology

• Will cooperatives lead to tears about tiers?
• Should people be able to pay for technologies
  that governments only provide to selected
  practices?

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Privacy vs. Informed Consent

• People have a right to privacy
• People also have a right to receive the
  information they need for informed consent
• Conflict between access to information needed for
  informed consent, and ability to prevent others
  from gaining access to personal information
  needed for aggregation

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Privacy vs. Informed Consent

• Deontological
• Responsibility of all to share for public good
• Utilitarian
• Everyone benefits if information about the
  results of care are readily available
• THEREFORE, Information gathered for one purpose
  should be available for use for other purposes
  with appropriate safeguards for confidentiality.

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Benevolent Deception?Percival Med Ethics 1847

• Deontological
• Absolute duty to tell the truth
• Utilitarian
• Boy who cried wolf
• Both perspectives produce same result. Clinicians
  should never deceive patients.

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Ethical dilemma 1Home Care(Xiamin Lou)

• What should caregivers do when there is
  conflict with patients autonomy
  (self-determination, advance directives) and
  beneficence?
• For most common instance On one hand,
  patients may refuse treatment even though it is
  reasonable and would be beneficial on the other
  hand, patients and families may demand services
  that are not required or maybe harmful to them.

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Dilemmas and Predicaments

• Solutions?
• Is this an appropriate discourse for informatics
  students?
• What if there are no clear solutions does that
  mean that anything goes? Or do we become
  paralyzed?
• Are there choice rules based on deontology? On
  utilitarian principles?
• COMMENTS?

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Kimberly Tomasson

• An ethical experts approach
• Panel discussion and audience participation
• How do we ethically overcome apparent barriers
  to progress?
• Are we doomed?