Dr Mike Ewart Smith Division of Psychiatry, University of Witwatersrand The Ethics of Informed Consent: Revisiting the Doctor Patient Relationship

Paternalism  Making of decisions by professionals on behalf of patients  Dirty word – OUT – AUTONOMY is IN Liberty, dignity, individuality, independence, accepting responsibility, self assertion, knowledge of one’s own interests, privacy, voluntariness, freedom from coercion or deception

HPCSA Guidelines Booklet 9 May 2008 SEEKING PATIENTS’ INFORMED CONSENT: THE ETHICAL CONSIDERATIONS

Informed consent The process by which a fully informed patient can be an informed participant in her health care decisions

Ethical obligation to inform patients on  Diagnosis  Treatment Plans  Side effects of medication

Patient must be informed of :  Nature and purpose of the intervention  Reasonable alternatives  Relevant risks, benefits and uncertainties of each alternative

Patients must  have knowledge of the nature or extent of the harm or risk  appreciate and understand the nature of the harm or risk  consent to the harm or assume the risk and  The consent must be comprehensive, including consequences

Exceptions : patient incompetent to participate  Coma  Altered state of consciousness  Mentally ill  Dementia  Child

“Try to find out whether”  The patient has previously mandated someone else in writing to make decisions on their behalf  Have indicated preferences in an advance statement (“living will”, “advance directive”)  Or take into account “patient’s known wishes”

Living Will  Living Will is binding in law, and a doctor who disregards it is legally in the wrong  To disregard a Living Will is an assault against the patient and doctor can be sued  It is the patient’s informed consent and not the doctor’s motive which makes the doctor’s intervention lawful McQuoid-Mason

Hierarchy of persons able to consent for incompetent patients  Person authorised by court eg curator  Spouse  Partner  Parent  Grandparent  Major child  Brother or sister

“Best interests” principle  Clinical indications  Previous expressed preferences  Patient’s background..cultural, religious, employment  Third party’s views of the patient’s preferences  Which option least restricts patient’s future choices

Emergencies  Provide treatment but limit to what is necessary to save life or avoid significant deterioration in patient’s health  But respect valid advance refusal by the patient  Give patient information as soon as she is sufficiently recovered

Children & Informed Consent  Age of consent  Medical treatment  Surgery  Reproductive  Parental role  Differences between wishes of child and those of the parents (or between parents)  Refusal of treatment based on religious grounds - adult/child

“TRUTH” and Benificence and Non-maleficence  Are doctors obliged to always tell patients the truth?  Must it be the “whole” truth?  Have patients the right not to be told the truth?  Cultures where individual autonomy is not the driving principle

Giving patient bad news  Time  Place  Method

Beneficence-centred Approach  Quality of life is main concern  Varies from person to person  Degree of impairment is vital factor in decision  Difficult decisions in patients who are conscious but seriously compromised eg MS, MND  This suggests we should maintain life only if reasonable chance that patient will have meaningful life  ie we compare with our concept of the “norm” Only if continued life is in patient’s “best interests”  ie Is expected life better than absence of life?  eg positive experiences outweigh pain & suffering

Sanctity of life (Trump card Rule)  Strive to preserve life in all situations, regardless of degree of impairment  Often based on specific religious belief system  The person’s “worth” does not depend on ability to lead certain life style  Exceptions to rule may open door to withholding treatment from people of less “worth”  And then to even take their lives  Very limited evidence of this (Nazi Germany, China)

Factors Affecting Quality of Life  Ability to relate to others  Degree of cognitive impairment  Ability to carry out plans and daily activities  Extent to which patient experiences pleasure and pain  NB These are all based on degree of impairment

Who should decide?  Regulatory bodies external to institution  enforcing substantive principles  rules apply to all  easier approach  Ethics committees within institution  can be more flexible in individual cases  useful advisory body  Patient’s family guided by doctor  best qualified to judge what is best for patient