Informed Consent - Introduction
Informed consent stems from the fundamental human right to personal autonomy, integrity, and self-determination. Violations of these human rights in medical practice gave rise to the requirement that patients should expressly consent to medical procedures or treatments. Unfortunately, patients with mental disabilities are frequently deemed incompetent to make the decision to give or withhold consent to their treatment.
A patient's consent, or agreement, is a legal agreement where a patient gives his or her express permission before any medical treatment is administered, whether it be a simple blood test or a major operation. Consent must be voluntary and informed to be valid. Consent is considered voluntary when the decision to accept or refuse treatment is made by the patient himself or herself and not forced or coerced by medical staff, family, or other interested parties.
Consent is considered informed when the patient is given full information and understands the nature of the treatment, its benefits and possible side-effects, is aware of available existing alternatives to the suggested treatment, as well as understands the consequences of refusing or accepting the treatment. If a medical professional does not disclose all relevant facts to the patient before administering treatment, serious ethical issues arise, and he or she may even be brought to court. In addition, for the consent to be informed, the patient needs to have reasoning faculties, "without an impairment of judgment at the time of consent". Such an impairment can include illness, intoxication, insufficient sleep, and various health problems, including mental health problems or intellectual disability.
The requirement of competency creates an exception to the requirement of informed consent for medical treatment. If the patient is judged not to have mental capacity to make a decision regarding his or her treatment, doctors can administer treatment without the consent of the patient or even the patient's family if the doctors believe it is in the patient's best interest. This often leaves persons with mental illness or intellectual disabilities powerless to exercise the right accorded to everyone else.
People with mental disabilities and their advocates have lobbied to allow more opportunities to decide about medical treatment for themselves. Many, even in the medical profession, agree that a mental disability does not necessarily preclude a patient from making a reasonable and informed decision. However, violations of the rights of patients with mental disabilities continue which fail to respect their right to informed consent or to refuse treatment. Rather than automatically assuming incompetence and removing their decision-making power away, people with mental disabilities need to be provided with support that enables them to make informed choices. There are various mechanisms to achieve this, these can be seen in the section on supported decision-making of this website.
On this page, you will find information about issues around the right to informed consent to medical treatment by people with mental disabilities, as well as relevant publications and reports, a list of other useful links, and some of the identified best practices.
Selected Sources
Consent to Treatment is a section on the webpage of the British National Health Services. It explains in an accessible manner what constitutes patient's informed consent.
Collection of Case Studies on Ethical Issues of Informed Consent for Medical Students (2003), published by Israel National Commission for UNESCO, provides a variety of examples from medical practice in different countries on issues surrounding informed consent, the right to refuse treatment, the right not to know, competence, and others.
Psychiatry Residents Often Skip Informed Consent (2007), by Will Boggs, reveals the results of an investigation into the practices in psychiatric institutions, namely an excessively passive approach to informed consent discussions with patients.
Informed Consent and the Right to Refuse Treatment (2002), by Valerie Goodwin Larcombe of the Akerman, Senterfitt and Eidson, is a summary of the evolution of the statutory and case law on the informed consent and the right to refuse treatment of competent and incompetent patients in the USA.