Transcript Which new antiepileptic drug for which patient?

UCL INSTITUTE OF NEUROLOGY
DCEE
Ethics in Epilepsy
Ley Sander MD PhD FRCP
Department of Clinical and Experimental Epilepsy
UCL Institute of Neurology, Queen Square, London and
SEIN – Epilepsy Institute in the Netherlands Foundation
Heemstede, the Netherlands
UCL INSTITUTE OF NEUROLOGY
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Epilepsy and Ethics
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Care and Health Care are basic human rights
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All individual and entities have a duty of care in
their dealing with other and with the environment
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To exercise reasonable care with respect to the
interests of others, including protecting them from
harm
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Differing aspects of epilepsy
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Seizures – not there most of the time!
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Physical
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Depression, anxiety, adjustment to circumstances
Social and family functioning
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Impairment of function, mobility, morbidity, co-morbidity
Emotional and behavioural
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Frequency & severity, unpredictability, safety
Relationships, dependence, family, leisure
Cognitive and academic
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Schooling, employment, aspirations, expectations
UCL INSTITUTE OF NEUROLOGY
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Ethics:
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The Sciences of morality
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In Philosophy, ethical behavior is that which is
“good" or “right"
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Concepts such as "good“, "bad“, "right“, "wrong“,
"moral“, "immoral”
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But these concept may have very different meaning for
different people!
UCL INSTITUTE OF NEUROLOGY
DCEE
DCEE
Ethics:
•
The Sciences of morality
•
In Philosophy, ethical behavior is that which is
“good" or “right"
•
Concepts such as "good“, "bad“, "right“, "wrong“,
"moral“, "immoral”
•
But these concept may have very different meaning for
different people!
• Ethically duty of care needs to be exercised
properly and impartially
UCL INSTITUTE OF NEUROLOGY
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Ethics:
•
Set of moral values that govern interactions of
oneself with others, with society and with
surroundings encompassing all spheres
•
Concerns duties, obligations, and taking the right
actions in dealing with others
–
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Duty of care
Values, priorities, and morals
UCL INSTITUTE OF NEUROLOGY
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Ethics in Epilepsy
• Multi-faceted condition which affects many
domains of people’s life
• As such many aspects to ethics in epilepsy
• Involve relations between people with epilepsy
and their carers, family, peer group, health
providers, and society as a whole
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Differing Aspects of Ethics in Epilepsy
• Clinical Work
• Care
• Research
• Disclosure
• Code of Ethics
• Conflict of Interests
• Treatment Gap
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Clinical Work
• Treatment choices
• Decision to treat or not to treat
• People with learning disabilities
• Consent and assent
• Treatment procedures
• Investigations
• Emergency care
• Terminal care
UCL INSTITUTE OF NEUROLOGY
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Care
• Decision making
• Emergency treatment
• Calling emergency services
• Taking to hospital
• People with learning disabilities
• Choices
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Placement
Treatment
Participation in research
Contraception
• Right to privacy
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Research Work I
• Detailed study of a subject or issue to discover
new information or reach new understanding
• Must provide benefit
• Should not harm
• Not all “research” is research
• service evaluation
• audit
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Research Work II
• Valid research question
• Appropriate methodology
• Well described
• Reproducible
• Ethically approved
• Dissemination of results
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Research Work III
•Degree of information for consent
• Excluding certain groups from research
• Woman in childbearing age
• Woman who are pregnant
• People with learning disability
• People with certain family histories
• People with certain co-morbidities
• People with previous histories of specific reactions
• People with Learning Disability
• Participation in research
• Assent or consent
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Research Work II
• Scientific integrity
• Fraud and misconduct
• Making up data
• “Cooking the books”
• Plagiarism
• Sloppiness
• Cutting corners
• Carelessness
• Plagiarism
• Animals rights
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Disclosure
• Right to privacy
• Right to confidentiality
• Disclosure of medical information
• Balancing confidentiality against public interest
• Pilots, drivers, soldiers, bus/train driver with
epilepsy
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Conflict of Interest
• When someone has more than one interest in
an issue when impartiality is a must
• Dealing with Conflict of Interest
• Removal
• Recusal
• Disclosure
• Ethical Code
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Ethical Code
• Better think of the issues ahead
• Code of Ethics (institutional, corporate, business)
• Sets out general principles on organization's beliefs
• Assists making decisions involving 'right' and
'wrong' concepts
• Code of Conduct (employees ethics)
• Code of Practice (professional ethics)
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Epilepsy in resource poor settings
• Most people with epilepsy in LAMIC
• Usually low health budget
• Less than US$ 10/year per capita
• Chronic diseases not a priority
• Inoculations, infectious diseases , child health
• Very high treatment gap
• High Burden
UCL INSTITUTE OF NEUROLOGY
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Epilepsy in resource poor settings
• Is it ethical for LAMIC to channel limited resources
from direct epilepsy care to research?
• In a country with limited resources, when does
ignoring the high treatment gap become an ethical
issue?
• Do countries with plentiful resources have an ethical
responsibility to help relieve the high epilepsy
treatment gap of poor countries?
Tan & Avanizini. Epilepsia 2009
UCL INSTITUTE OF NEUROLOGY
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Epilepsy and Ethics: conclusions
• Differing aspects of both epilepsy and ethics
• Best interest of other paramount in care
• Proactive in identifying issues that may raise questions
• Need for Ethical Codes
• Ethics, not law or being professional, should provide
the ultimate guidance for what we do
• The law of least effort should never apply!