Transcript Presentation to Central State Hospital April 5 2013 on Human Rights

A 21 year-old woman
• A 21-year-old woman attends a party, drinks alcohol
and takes Valium. After returning home she becomes
unconscious. She is taken to a hospital where she
stops breathing, is resuscitated, and is placed on a
ventilator. After several months the family is told she is
in a persistent vegetative state and is unlikely to
recover. The family requests she be removed from the
ventilator but the hospital and doctor object. The
ethics committee is consulted.
• What should you do? Why
• What more would you like to know?
IN RE QUINLAN
70 N.J. 10 (1976)
355 A.2d 647
IN THE MATTER OF KAREN QUINLAN, AN
ALLEGED INCOMPETENT.
The Supreme Court of New Jersey.
Argued January 26, 1976.
Decided March 31, 1976.
Human Rights and Ethics
Central State Hospital
Richard L. Elliott, MD, PhD, FAPA
Professor and Director, Medical Ethics
Mercer University School of Medicine
Adjunct Professor
Mercer University School of Law
Goals
• Purposes of ethics training
– What do you hope to get out of this?
• Competencies of ethics committees
• Foundations of medical ethics
– Principles
– Legal
• How to make decisions about ethical issues?
Why learn medical ethics?
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Consultations on specific clinical ethics cases
Consultations on specific policies
Consultations on personnel (HR) issues
Consultations to other organizations
Consultations on training needs in ethics and
professionalism
• Consultations on research
• Personal and professional growth
What do ethics committee members need to know and
to be able to do?
• Core Competencies for Clinical Ethics
Committees
• http://www.ukcen.net/uploads/docs/educatio
n_resources/core_competencies1.pdf
Core Competencies – Ethical Assessment Skills
• Ability to recognize and discuss moral conflicts
within the clinical situation
• Ability to understand the moral perspective of all
parties
• Ability to explain the ethical dimension of a case
to those involved and to others
• Ability to formulate and justify morally
acceptable solutions
• Ability to review established practices that have
generated moral concerns or conflicts, to
determine whether change is necessary.
Core Competencies – Operational Skills
• These are required in the process of resolving
conflict, reducing uncertainty, and building
consensus, and include:
• Ability to facilitate meetings, record cases etc.
• Skills in facilitation, of both case consultation
discussions and CEC meetings.
• Mediation skills required to negotiate conflict
resolution in situations of emotional distress.
Core Competencies – Interpersonal Skills
• Active listening.
• Communication skills.
• Advocacy skills to enable articulation of the
views of those who find it difficult to express
themselves.
Core Competencies - Knowledge
• Introduction to ethical theory and moral reasoning
• Awareness of the position of the CEC/Forum in the hospital
framework and links to clinical governance
• Relevant knowledge of clinical terms and disease
processes.
• Beliefs and perspectives of patients and staff population
and community staff.
• Relevant professional codes of ethics, e.g. GMC and Nursing
Council.
• Relevant health care law.
• Local and national government policy, e.g. resource
allocation.
Core Competencies – Personal Characteristics
• Tolerance, patience and compassion
Enables disparate views to be held in difficult situations
• Honesty, fair mindedness, self-knowledge and reflection
Enables recognition of personal limitations and development of
relationships based on of trust and respect
• Courage
• Enables voices of weak and vulnerable to be heard and dissenting views to
be put to those in authority. It involves the skill of advocacy
• Prudence, humility
• Enables individuals not to go beyond their level of competency and/or to
acknowledge conflicts between personal moral views and role in
consultation.
• Integrity
• Enables pursuit of ethically relevant options when it might be convenient
to do otherwise. Moral integrity should underpin all ethics consultations
How are we going to help you become competent in
medical ethics?
Course Overview
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Background
Ethical principles and analysis
Ethics and law
Informed consent and competence
Applications to CSH
• Schedule is flexible!
Session 1 - Background
Why is medical ethics important?
• A brief history of ethics and ethics committees
• What do we mean by “ethics” and how is this
distinguished from “morality” and “legality?”
• What do we mean by “medical ethics?”
• Who are the key figures and what are the key ideas in
the evolution of medical ethics?
• a. Hippocrates, Percival, AMA
• Nuremberg
• Tuskegee Study of Syphilis
• The Belmont Report - ethics and human rights
Session 2 – Ethical principles and analysis
What is medical ethics and what are its principles?
Principles of medical ethics
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Autonomy
Beneficence
Non-maleficence
Social justice
• How to recognize and respond to an ethical issue
• How to analyze an ethical issue
Session 3 – Law and ethics
What is “The Law” and how does it relate to the Ethics
Committee?
• Different types of “law”
– Statutory law
• Examples
– Reporting requirements
– O.C.G.A.
• Federal vs. state and potential conflicts
– Case law
• Appellate courts and jurisdiction
• Examples
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Olmstead
Parham
EMTALA
Others?
Session 4 – Specific Issues
Informed consent
Elements of informed consent
Capacity vs. Competence
What can we do when a patient is thought to lack
capacity?
What is implied consent? Therapeutic privilege?
DNR orders
O.C.G.A., DBHDD policy
Other ethical issues important to CSH
• 1. Research?
• 2. Confidentiality?
Session 5 – Applications to Ethics Committee
Mock ethics case consultations
Evaluation of Ethics Committee functions
Structure
Membership and meetings
Composition – Patient/community involvement?
Process
Knowledge and skills of members
Adequacy of ethics consultation process
Data on numbers, types of consultations, and trends
Comments on group process within the committee
Outcomes
Timeliness - Do you have a requirement? Do you meet it?
How often does treatment team follow recommendations?
Satisfaction of committee members, customers?
And now . . .
What do we mean that something is ethical?
• Legal
– What are the sources of “law”?
– Can something be legal but not moral?
– Current legal controversies: gun ownership, Affordable Care
Act, abortion
• Moral
– Where do we get moral beliefs?
– Can something be ethical but not moral?
– Current moral controversies: same sex marriage, abortion
• Ethical
– What are ethical codes?
– Current ethical controversies: physician assisted suicide,
euthanasia, futility of care, how to allocate scarce resources
• Where do ethical codes come from?
Why is history important?
• Understanding how we got here helps us
understand the foundations
• Advances in medicine require advances in ethics
• More diversity in staff and patients requires more
diverse ethical views
• Appreciating the evolution of medical ethics
helps us to anticipate the need for new, creative
thinking in how we consider situations. Perhaps
the way we looked at issues in the past is no
longer adequate.
Hippocrates 460-370 BC
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I swear by Apollo, the healer, Asclepius, Hygieia, and Panacea, and I take to witness all the gods, all the
goddesses, to keep according to my ability and my judgment, the following Oath and agreement:
To consider dear to me, as my parents, him who taught me this art; to live in common with him and, if
necessary, to share my goods with him; To look upon his children as my own brothers, to teach them this
art; and that by my teaching, I will impart a knowledge of this art to my own sons, and to my teacher's
sons, and to disciples bound by an indenture and oath according to the medical laws, and no others.
I will prescribe regimens for the good of my patients according to my ability and my judgment and never
do harm to anyone.
I will give no deadly medicine to any one if asked, nor suggest any such counsel; and similarly I will not
give a woman a pessary to cause an abortion.
But I will preserve the purity of my life and my arts.
I will not cut for stone, even for patients in whom the disease is manifest; I will leave this operation to be
performed by practitioners, specialists in this art.
In every house where I come I will enter only for the good of my patients, keeping myself far from all
intentional ill-doing and all seduction and especially from the pleasures of love with women or men, free
or slaves.
All that may come to my knowledge in the exercise of my profession or in daily commerce with men,
which ought not to be spread abroad, I will keep secret and will never reveal.
If I keep this oath faithfully, may I enjoy my life and practice my art, respected by all humanity and in all
times; but if I swerve from it or violate it, may the reverse be my life.
Thomas Percival
1740-1804
AMA Code of Medical Ethics
1847
Georgia Code of Ethics for Government Service
Code of Ethics for Government Service
The O.C.G.A. § 45-10-2 authorizes the Secretary of State to publish the Code of Ethics For
Government Service established in section 45-10-1 (Ga. L. 1968, p. 1369.) for exhibiting to the
public and employees of the state and all governments therein.
Any person in government service should:
I. Put loyalty to the highest moral principles and to country above loyalty to persons, party, or
government department.
II. Uphold the Constitution, laws, and legal regulations of the United States and the State of
Georgia and of all governments therein and never be a party to their evasion.
III. Give a full day's labor for a full day's pay and give to the performance of his duties his
earnest effort and best thought.
IV. Seek to find and employ more efficient and economical ways of getting tasks accomplished.
V. Never discriminate unfairly by the dispensing of special favors or privileges to anyone,
whether for remuneration or not, and never accept, for himself or his family, favors or benefits
under circumstances which might be construed by reasonable persons as influencing the
performance of his governmental duties.
VI. Make no private promises of any kind binding upon the duties of office, since a government
employee has no private word which can be binding on public duty.
VII. Engage in no business with the government, either directly or indirectly, which is
inconsistent with the conscientious performance of his governmental duties.
VIII. Never use any information coming to him confidentially in the performance of
governmental duties as a means for making private profit.
IX. Expose corruption wherever discovered.
X. Uphold these principles, ever conscious that public office is a public trust.
DBHDD Ethical Standards
• http://sos.georgia.gov/elections/georgia%20c
ode%20of%20ethics.htm
Background to TSUS
• Jenner vaccinated boy, exposed him to smallpox
• 1840s J. Marion Sims - surgical experiments on enslaved
women and infants without anesthesia
• 1874 MD opened skull of woman with tumor and
stimulated cortex with electricity until she died
• 1896 LPs done on children at Children’s Hospital in
Boston without parental consent to see if LP harmful
• 1900 US Army infected prisoners with bubonic plague
• Many other examples of deliberate infections with
syphilis, tuberculosis, cholera, . . .
• Informed consent not well developed until 1960s
Yellow fever
Walter Reed, MD 1851-1902
Jesse Lazear, MD PhD 1866-1900
“To know syphilis is to know medicine”
Sir William Osler 1849-1919
Early Treatments for Syphilis
Julius Wagner-Jauregg, MD 1857-1940
Paul Ehrlich, MD 1854-1915
Syphilis - 1930
• Widespread
• Leading cause of admission to mental
hospitals
• Treatment dangerous, unclear if favorable
risk/benefit ratio in later stages
– Mercury, arsenicals, bismuth, malaria
• Previous study of course of syphilis in
whites
• Study needed to compare outcomes in
treated vs. untreated syphilis
Tuskegee Study of Untreated Syphilis
• 1932-1972 US PHS
• 600 subjects
– 399 with syphilis, 201 controls
• To determine course of untreated
syphilis in African American men
• Julius Rosenwald Fund
Eunice Rivers
Treatment!
Penicillin and Syphilis
• Penicillin available 1943
• Treatment of venereal diseases mandatory in
Alabama
• Henderson Act of 1943 required treatment of
venereal diseases
• Subjects received notices from draft boards
ordering treatment
Nuremberg Code (1947)
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Voluntary consent of competent individual
Benefits society, not obtainable by other means
Sufficient scientific basis to justify experiment
Avoids unnecessary suffering and injury
Avoid disabling injury or death unless MDs are subjects
Degree of risk proportional to societal benefit
Facilities and preparations to protect subjects
Conducted by qualified investigators
Subject can terminate participation
Investigator should terminate if unsafe to participant
World Medical Association
Declaration of Helsinki
• 1964, most recently clarified 2004
• Some research populations are vulnerable and
need special protection. The particular needs of
the economically and medically disadvantaged
must be recognized. Special attention is also
required for those who cannot give or refuse
consent for themselves, for those who may be
subject to giving consent under duress, for those
who will not benefit personally from the research
and for those for whom the research is combined
with care.
• Questions use of placebos
Tuskegee Study
1968 Peter Buxtun voices
concerns
1969 CDC, AMA, NMA
reaffirm support for TSUS
1972 Buxtun approaches AP,
expose published
1973 HEW Report critical of
Study
Ethical Problems with TSUS
• Failure to inform subjects of nature of study and
their illness
• Deception regarding LP “treatment”
• Failure to inform subjects of penicillin
• Failure to offer penicillin
• Failure to inform partners of risks
• Was failure to offer Rx at outset unethical?
Retrospective Ethical Assessments
• Some things are always right
– Categorical imperative
– Deceiving patients for Study purposes
• Some things are right or wrong only in a
culturally relative sense
– Informed consent
• AMA 1847 unethical telling patients bad news
Was Tuskegee An Isolated Incident?
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1946-48 Guatemala syphilis study
1956-70 Hepatitis and Willowbrook State School
1961 Milgram Yale study
1963 Cancer and Jewish Hospital for Chronic Diseases
1960-72 Cincinnati radiation exposure experiments
1971 Zimbardo Stanford prisoner experiments
1993-95 Johns Hopkins lead study
2011 Las Vegas MD indicted for infusing stem cells
Aftermath of Tuskegee
• Widespread distrust among blacks of clinical
studies
• National Research Act of 1974
• Belmont Report
• Institutional Review Boards
What have we learned?
• We looked at the most important case in
medical ethics – Karen Ann Quinlan
• We learned that medical ethics is evolving
• We introduced key topics in medical ethics
• We discussed core competencies for ethics
• We have described important historical events
that might help you to communicate to others
why ethics is an important function, and is an
important part of who you are and what you
do