Ethical Dilemmas for Ethical Dilemmas for E-HealthE-Health

David ZitnerDavid ZitnerDirector Medical InformaticsDirector Medical InformaticsDalhousie UniversityDalhousie UniversityKimberly TomassonKimberly TomassonEthicist, University of VictoriaEthicist, University of Victoria

E-HealthE-HealthBenefits or ethical Benefits or ethical morass?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.”

Apparent Ethical Dilemmas Impede Progress!

Framing ethical dilemmas differentlyleads to different conclusions

An understanding of the various waysto frame ethical dilemmas helps resolve them, and surprisingly will increase the speed of adoption ofworthwhile information technology

E-Health Holds E-Health Holds Promise for GoodPromise for Good BarriersBarriers

– PrivacyPrivacy– SecuritySecurity– Deontological viewsDeontological views

Personal Information is a public good for Personal Information is a public good for public benefit?public benefit?

– UtilitarianUtilitarian Appropriate personal information is a Appropriate personal information is a

public good for public benefit?public good for public benefit?

Developing a Course for Developing a Course for Technically Advanced HI Technically Advanced HI StudentsStudents When does attending to a When does attending to a

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

PerspectivesPerspectives

UtilitarianUtilitarian orientations focus on trying to orientations focus on trying to achieve the greatest amount of good for achieve the greatest amount of good for the greatest number of peoplethe greatest number of people

DeontologicalDeontological perspectives view ethical perspectives view ethical issues from a right-duty perspective and issues from a right-duty perspective and attempt to resolve moral conflict by attempt to resolve moral conflict by balancing competing interests. balancing competing interests. (Tommason, U.Vic)(Tommason, U.Vic)

Sometimes these views conflictSometimes these views conflict

Failing to address Failing to address ethical conflict leads ethical conflict leads to paralysisto paralysis Caring for patients vs. caring for Caring for patients vs. caring for

community-Informed consent!community-Informed consent!

Are duties to individual patient or Are duties to individual patient or to community? What information to community? What information should be aggregated? Should we should be aggregated? Should we defer implementing EMR’s because defer implementing EMR’s because some are fearful that the some are fearful that the information will be misused? Is the information will be misused? Is the question philosophical question philosophical (deontological) or empirical (deontological) or empirical (utilitarian)(utilitarian)

Dilemmas and Dilemmas and PredicamentsPredicaments Parentalism vs. Autonomy Parentalism vs. Autonomy Adequate information aboutAdequate information about

– Access and results can lead to Access and results can lead to anxietyanxiety

– Access and results is necessary for Access and results is necessary for personal choice.personal choice.

Public Health IssuesPublic Health Issues

Disease surveillanceDisease surveillance Health PromotionHealth Promotion Treating predilictionsTreating predilictions

– Certain information will benefit some Certain information will benefit some and clearly harm othersand clearly harm others

Constituency ViewsConstituency ViewsWhere is the Where is the Obligation?Obligation? PublicPublic PatientsPatients Health Services AdministratorsHealth Services Administrators

– Provider OrganizationsProvider Organizations Policy MakersPolicy Makers ProvidersProviders

Sometimes doing “right” Sometimes doing “right” doesn’t seem to fit with a doesn’t seem to fit with a utilitarian modelutilitarian model

– $300,000 for Fabry’s Disease$300,000 for Fabry’s Disease

Insurance cost = $6.00/year per person Insurance cost = $6.00/year per person if 20 people in Nova Scotia need the if 20 people in Nova Scotia need the drugdrug

– The cost of paying for this represents only The cost of paying for this represents only a small fraction of N.S. drug costs per a small fraction of N.S. drug costs per personperson

$6/$457.56 = 1.3%$6/$457.56 = 1.3%

Should we pay for Should we pay for expensive drugs if they expensive drugs if they are useful?are useful? Cost of covering Fabry’s disease Cost of covering Fabry’s disease

represents only 1.3% of total drug represents only 1.3% of total drug costs (possibly less).costs (possibly less).

Is this compatible therefore Is this compatible therefore with both a deontological with both a deontological model and a utilitarian model and a utilitarian model?model?

Looking for Scarcity but Looking for Scarcity but Finding abundanceFinding abundance? ?

– 1993-1998 12% increase in 1993-1998 12% increase in spending on antidepressants spending on antidepressants yet some drug manufacturer’s yet some drug manufacturer’s state the drugs aren’t effective.state the drugs aren’t effective.

– How IT and Tracking will help us How IT and Tracking will help us build on abundance.build on abundance.

Contemporary IssuesContemporary Issues

Line ups- few for things we all can normally affordLine ups- few for things we all can normally afford Longer for expensive procedures Longer for expensive procedures

Payment issuesPayment issues– Is there a benefit to beneficiaries of medicare Is there a benefit to beneficiaries of medicare

contributing when they receive service (As contributing when they receive service (As Tommy Douglas, Romanow and Kirby all Tommy Douglas, Romanow and Kirby all suggest). How? suggest). How?

– Or is health care a “right” which everyone must Or is health care a “right” which everyone must get free of cost regardless of consequences on get free of cost regardless of consequences on other community spending.other community spending.

What if this means we are all subject to What if this means we are all subject to illegible scrawls on scraps of paper?illegible scrawls on scraps of paper?

Health care cooperatives Health care cooperatives (user pay) to adopt (user pay) to adopt technologytechnology

Will cooperatives lead to tears Will cooperatives lead to tears about tiers?about tiers?

Should people be able to pay for Should people be able to pay for technologies that governments technologies that governments only provide to selected only provide to selected practices?practices?

Privacy vs. Informed Privacy vs. Informed ConsentConsent People have a right to privacyPeople have a right to privacy People also have a right to receive the People also have a right to receive the

information they need for informed information they need for informed consentconsent

Conflict between access to information Conflict between access to information needed for informed consent, and needed for informed consent, and ability to prevent others from gaining ability to prevent others from gaining access to personal information needed access to personal information needed for aggregationfor aggregation

Privacy vs. Informed Privacy vs. Informed ConsentConsent DeontologicalDeontological

– Responsibility of all to share for public goodResponsibility of all to share for public good UtilitarianUtilitarian

– Everyone benefits if information about the Everyone benefits if information about the results of care are readily availableresults of care are readily available

THEREFORE, Information gathered for THEREFORE, Information gathered for one purpose should be available for one purpose should be available for use for other purposes with appropriate use for other purposes with appropriate safeguards for confidentiality.safeguards for confidentiality.

Benevolent Deception?Benevolent Deception?Percival Med Ethics Percival Med Ethics 18471847 DeontologicalDeontological

– Absolute duty to tell the truthAbsolute duty to tell the truth UtilitarianUtilitarian

– ““Boy who cried wolf”Boy who cried wolf” Both perspectives produce same Both perspectives produce same

result. Clinicians should never result. Clinicians should never deceive patients.deceive patients.

EEthical dilemma 1thical dilemma 1Home CareHome Care((Xiamin Lou)Xiamin Lou)

What should caregivers do when there is What should caregivers do when there is conflict with patient’s autonomy (self-conflict with patient’s autonomy (self-determination, advance directives) and determination, advance directives) and beneficence?beneficence?

For most common instance: On one hand, patients For most common instance: On one hand, patients may refuse treatment even though it is reasonable may refuse treatment even though it is reasonable and would be beneficial; on the other hand, patients and would be beneficial; on the other hand, patients and families may demand services that are not and families may demand services that are not required or maybe harmful to them.required or maybe harmful to them.

Dilemmas and Dilemmas and PredicamentsPredicamentsSolutions?Solutions?Is this an appropriate discourse for Is this an appropriate discourse for

informatics students?informatics students?What if there are no clear solutions does What if there are no clear solutions does

that mean that anything goes? Or do that mean that anything goes? Or do we become paralyzed?we become paralyzed?

Are there choice rules based on Are there choice rules based on deontology? On utilitarian principles?deontology? On utilitarian principles?

COMMENTS?COMMENTS?

Kimberly TomassonKimberly Tomasson

An ethical experts approachAn ethical experts approach

Panel discussion and audience Panel discussion and audience participationparticipation

How do we ethically overcome apparent How do we ethically overcome apparent barriers to progress?barriers to progress?

Are we doomed?Are we doomed?