Promoting quality healthcare for people with disabilities through education about decision-making and true informed consent
Family Members: Frequently Asked Questions
What does "informed consent" mean?
Informed consent includes 3 elements:
Information - should be broken down and presented in the simplest possible terms
Understanding - all questions are answered; person can verify what s/he heard
Voluntary choice - without pressure from others to decide in a particular direction
Any level of assistance can be provided to help the person make the decision; needing such help does not negate an informed choice.
It is important to remember that the ability to give consent is based on the complexity or difficulty of the decision. A person may be able to make decisions about general or routine health services (such as a routine physical exam, or treatment for a minor injury), but the same person might need considerable support to decide whether to have a surgical procedure, or take a medication which has very serious side-effects. Most, if not all, of us would need support to make decisions regarding very aggressive treatment for a life-threatening condition, or for end-of-life care.
Family and/or friends are preferable to public agencies as substitute decision makers.
Options that place the fewest limits on the individual's decision making are prefered.
Decision-making laws are state-specific.
Is guardianship the best option?
Guardianship assigns a persons civil rights to the court, and the court then appoints a representative. The law requires that less restrictive alternatives be considered for a number of good reasons. Alternatives to guardianship:
Can be used immediately, thus preventing delay of treatment;
Are less expensive; do not involve lawyers or the courts;
Are not adversarial (each party has an attorney in a guardianship petition);
Rely on family and friends versus public agencies;
Allow the appointed decision-maker broader independent authority;
Increase the person's participation in the process.
What are the alternatives to guardianship?
Advance Directive for Health Care
An advance directive authorizes a specific decision-maker called a Health Care Agent (HCA) to make health care decisions. It can also be used to say what kind of treatment options are prefered. In order to complete an advance directive, the person must be at least 18 years old and be his/her own legal guardian. The person can give as much or as little authority to the HCA as desired, and can also designate under what circumstances the HCA may act.
While the person must be able to voluntarily select who will be the HCA, the capacity to give informed consent is not necessary. The required ability is to decide who will make decisions, rather than understanding and giving consent for the decisions themselves.
A surrogate may be asked to make decisions for an adult who is deemed incapable of making an informed decision and has no appointed HCA. The law designates, in priority order, who may act as surrogate:
Legally appointed guardian;
Adult child of the patient;
Parent of the patient;
Adult sibling of the patient;
Friend or other relative who is competent and can present an affidavit demonstrating regular contact sufficient to be familiar with the patient's health and personal beliefs.
Surrogacy requires that 2 physicans certify the patient is unable to make an informed decision by any other means, and a surrogate may not authorize mental health treatment, sterilization, nor any treatment the person has clearly rejected.
This site developed by Resource Connections, Inc. with a grant from the Maryland Developmental Disabilities Council.