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The Language of Bioethics (Glossary)

Objectives

Goals

Required Reading

Clinical Vignettes

Informed Consent

Confidentiality

Topical Questions

Suggested Readings/References


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Informed Consent and Confidentiality

Objectives

To explore the physician's ethical and legal responsibilities for informed, voluntary consent and confidentiality of patient information.

Goals

Each student will understand and apply the following in discussion of cases:

  1. The purpose and essential elements of fully informed and voluntary consent.
  2. Legal authority to give effective consent for self or others.
  3. Basic clinical criteria for competence to consent.
  4. Requirements for and limitations to patient-physician confidentiality; and when it is acceptable to breach confidentiality.
  5. The primary ethical, legal and professional guidelines for these topics.

Required Reading

  1. Introduction to Clinical Ethics by Fletcher, Miller, Lombardo and Marshall. Second Edition
    "Respecting Privacy and Confidentiality," p. 41-53
    "Determining Patients' Capacity to Share in Decision Making," p. 71-88
    "The Process of Informed Consent," p. 89-105
  2. Meisel, A & Kuczewski M. Legal and ethical myths about informed consent. Arch Intern Med; Vol 156, Dec 9/23, 1996: 2521-2526.
    Note: This article can be found through Ovid and will require an ID and password.

Clinical Vignettes

Bobby Raines: Don't Tell My Mom

Bobby Raines is a 16 year old, African American young man who is in his junior year at City Technical High School. He has a history of risk taking behavior that many would say is characteristic of his age group. He states (brags actually) that he became sexually active at the age of 13, having had 8-10 partners in the last 3 years. He seldom uses condoms, stating that they are unnecessary, diminish his pleasure and "performance", and that birth control is the woman's responsibility. Last week he was informed that a woman with whom he had sexual contact about a year ago has tested positive for HIV during a recent prenatal visit, so he came in for a physical exam and an HIV test.

Results from the physical exam were within normal limits. He appears to be in good general health. After appropriate counseling, blood was drawn and sent to the lab. He was given the standard packet of information on HIV, other SDS, and birth control.

The lab report is positive for HIV. Bobby was contacted through his beeper, and is returning for the test results this morning.

Script

Dr. Newman: Hello, Bobby. We received the results of your HIV tests, and I'm terribly sorry to tell you that it's not good news. The tests show conclusively that you are infected with the HIV virus. We discussed last week what these results mean and the available treatments. I know there is a lot for you to think about, and we can go over any question you might have. I can help you connect to many forms of assistance when you need them.

Bobby: Wow! I can't believe this! Man, I never even believed for a minute that this could happen to me. I read all that stuff you gave me last week. I don't want to die!

Dr. Newman: Now calm down a little, Bobby. Get a grip. We might not have a cure right now, but good care...that means you taking your prescriptions and changing your lifestyle...can significantly prolong your life even after symptoms appear. And we don't know how long it will be before the disease starts to cause you significant problems. Sometimes it takes years. Research suggests that several promising new drugs are being developed, so it is impossible to say exactly what your odds are.

Bobby: I'm not sure I know what to do about treatment just yet. I hardly know what to think...I still can't believe it. Let's deal with that stuff later.

Dr. Newman: Of course, but there are some things we need to discuss even now. We will need to notify the women you've had sexual contact with in the last year; we certainly don't want this to spread. And if there is anyone important to you, like your parents, you should consider telling them.

Bobby: I can try to give you the names of the girls, uh, I mean women, that I've been with in the last year. But I sure as heck don't want you, or anyone else to tell my parents, especially my mom! Man, that would kill her. She doesn't know about, you know, my goin' out. I don't even want to think about all this stuff. How can I ell anyone about this?! You've been my doctor for over 10 years, I want you to take care of me...hopefully for another 10. But promise me you won't tell my mom.

Now, what do you do?
Continue to role play to complete this interaction. Remain in character and improvise.

Refusing Consent for Lumbar Puncture

Mrs. K is a 45 year old woman who is seen in the Acute Care Clinic with a complaint of headache of recent onset. She states that her only other episodes of headache were associated with eyestrain, usually when she needed her glasses changed. The last time was about two years ago. She reports that this is different, but she has difficulty describing any of her symptoms, just that this one is "real bad and won't go away." In general, she is a poor historian.

On physical examination, she is a morbidly obese female in some distress. Her exam is unremarkable except for moderate hypertension and pronounced bilateral papilledema. Neurology is consulted, and she is admitted for observation and tests, including a lumbar puncture.

Several attempts at the spinal tap are unsuccessful because of Mrs. K's obesity. She was cooperative through the ordeal of initial attempts, but when the resident approaches her later to try again, she refuses the test. When asked for the reason for her refusal she states that it was very painful the first time, and her sister has told her about someone their cousin once heard of who had had a lumbar puncture and had been paralyzed. The resident told her that her papilledema could be a sign of "a serious, life-threatening problem" and that the tap was "absolutely necessary to diagnose and treat" that problem. She further states that "there is absolutely no danger of paralysis from the procedure." During the next three days, the resident tries repeatedly to convince Mrs. K to cooperate, but she continues to refuse. When the resident informs her of her option to sign out "against medical advice," she does so. She does not respond to multiple requests for her to return to be seen in the clinic and is lost to follow-up.

Informed Consent

I. An informed competent patient's preference to accept or refuse medically indicated treatment. This requires information to allow a reasonable person to make prudent choices in his/her behalf.

II. Four basic elements:

  1. Disclosure
  2. Comprehension
  3. Competency
  4. Voluntary choice

Disclosure: must be truthful and includes:

  • Current medical status and likely course if no treatment.
  • Interventions that might improve prognosis–risks, benefits, probabilities and uncertainties of these interventions.
  • Opinion of alternatives.
  • Recommendation based on physician's best clinical judgement.
  • Details vary depending on emergency, elective or in-between.
  • Research

Comprehension

  • Physician must make reasonable efforts to assure comprehension.
  • Requires dialogue between physician and patient.

Competency

  • Mental capacity to understand and make choices.
  • Ability to understand relevant information, appreciate one's medical condition and its consequences, to communicate a choice and to rationally be able to discuss one's own values in relation to treatment options.
  • Surrogate decision-makers (family members, etc.).
  • Determination of incompetence may require legal determination.

Voluntary Choice

  • Competent refusal of treatment must be respected.
  • Refusal on grounds of belief.
  • Enigmatic refusal.

III. Significance

1. Ethical: Self-determination

A. Autonomy: moral right to choose and follow one's own plan of life and actions

2. Legal

A. Each person has fundamental right to control his own body and the right to be protected against unwanted intrusions or unconsented touchings explicit consent offers this protection

B. Patient-physician relationship is a fiduciary one, i.e., physician must promote best interests of the patient.

3. Psychological: Self-worth demand ability to express preferences and have other respect them.

IV. Issues Related to Informed Consent

1. Therapeutic privilege

A. When to breach:

1. In an emergency when time required for full disclosure might jeopardize patient's health

2. When patient would not want to know certain particulars

3. When release of information is judged to pose a threat to public health and welfare

B. Treatment refusal

1. Competency

2. Enigmatic

3. Special circumstances (unusual beliefs)

C. Research ethical principles stem from Nuremberg Trials after WW II.

Confidentiality

I. Basic Elements

  1. Respect for patient's privacy and autonomy
  2. Prevention of harm to patients
  3. Fiduciary relationship between patient and physician
  4. Service to the common good (i.e., confidentiality is good for society in general)

II. Obligations to Respect Confidentiality

  1. Professional ethical guidelines
  2. Legal standards
  3. Important exceptions
  4. Comparison of confidentiality in Codes of Medical Ethics

A. World Medical Association. A doctor owes to his patient absolute secrecy on all which has been confided to him or which he knows because of the confidence entrusted to him.

B. Declaration of Geneva. I will hold in confidence all that my patient confides in me.

C. Hippocratic Oath: Whatever, in connection with my professional practice, or not in connection with it, I see or hear, in the life of men, which ought not to be spoken abroad, I will not divulge, as reckoning that all such should be kept secret.

D. British Medical Association. It is a practitioner's obligation to observe the rule of professional secrecy by refraining from disclosing...(save with statutory sanction) to any third party information which has learnt in his professional relationship with the patient...On certain occasions it may be necessary to acquiesce in some modification. Always, however, the overriding consideration must be adoption of a line of conduct that will benefit the patient, or protect his interest.

E. American Medical Association Principles of Medical Ethics. A physician may not reveal the confidences entrusted to him in the course of medical attendance, or the deficiencies he may observe in the character of his patients, unless he is required to do so by law or unless it becomes necessary in order to protect the welfare of the individual or of the society.

But what if the best interest of the patient is illegal or prevents justice? What counts, and when is it sufficient to breach confidentiality? Either one of two approaches is usually taken.

5. Generally accepted exceptions to confidentiality

A. When the law requires it (e.g., gunshot wounds, infectious diseases, suspected child abuse, dog bites)

B. When it is in the best interest of the patient (e.g., to prevent suicide)

C. When it is in the best interest of society (e.g., Typhoid Mary-type cases or the patient is planning a homicide)

D. What if the best interest of the patient is illegal or prevents justice and is not required to be reported by law? If there are to be exceptions, under what conditions do you breach confidentiality?

6. Conditions for breach of confidentiality

The principle of confidentiality should not be breached unless all the following conditions are met simultaneously:

A. Its maintenance would clearly result in damage that outweighs the damage done by the breach.

B. There is no other way that does not involve a breach of confidentiality to avoid the damage.

C. The breach is the least possible that will prevent the damage or is the one with the least harmful consequences to the patient.

D. The patient is informed, preferably before the breach.

Topical Questions

  1. What should patients be told about treatment procedures proposed to them? How much detail and how should it be communicated?
  2. What if a patient is not very sophisticated? What if he is likely to be frightened or refuse treatment that is in his best interest?
  3. Should an adult ever be treated without or against his consent? If not, why? If so, when?

Suggested Readings/References

  1. Code of Medical Ethics, American Medical Association
    "Principles of Medical Ethics," p xiv-xxxviii
    "Fundamental Elements of the Patient-Physician Relationship," p xxxix-xliii
    "Informed Consent," 8.08
    "Confidential Care for Minors," 5.055
  2. Ethics Manual, Fourth Edition, American College of Physicians
    "Physician and Patient"
    "The Physician and Society"
    "Conflicts of Interest"
    "Consent"
    "Confidentiality"
    "Decisions about Reproduction"
  3. The Doctor's Dilemma
    "Bowsher Case"
    "Harper Case"
    "King Case"
  4. Introduction to Clinical Ethics by Fletcher, Miller, Lombardo and Marshall. Second Edition.
    "Communication, Truthtelling, and Disclosure." p 55-70.
  5. The Hippocratic Oath (Located within Doctor's Dilemma)
  6. Official Code of Georgia
    31-9-1 through 31-9-6.1 and 24-9-40.
  7. Martin, RM. Some Ethical Issues in the Disclosure of Progressive Diseases of the Nervous System. Southern Medical Journal. July 1978; Vol 71(7): 792-794.
  8. Medical College of Georgia Hospitals and Clinics, Request and Informed Consent to Surgical and/or Diagnostic Procedure.


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Medical College of Georgia

Please email comments, suggestions or questions to
Alan Roberts, aroberts@mail.mcg.edu.
August 05, 2002