Nursing Manual

Medical Decision Maker, Informed Consent

Capacity and Capability

• A person's receptive language skills are frequently better than their expressive skills.
• Be sure to talk to the person who knows the individual's communication best. This frequently is a direct care staff who has known the person for a long period of time.
• Informed consent involves the ability to understand the consequences of one's actions/decisions. When the consequences are serious, a person needs a deeper understanding of those consequences. A person may be very able to give consent (or refuse) to take a cold medication, but not truly understand the consequences of forgoing life-saving treatment.
• Capacity/capability is not an "all or none" phenomena. The person may be capable of making a simple decision but not complex ones.
• A person who physically and vocally objects to going to a health provider's office or receiving a treatment may simply be communicating that they are afraid of people in white coats, have been hurt in similar environments, etc. They may not be communicating a true informed decision and rejecting medical care.
• Use simple, concrete language. If possible, demonstrate the complex area (e.g. show them someone with a tracheostomy). Do not ask leading questions.
• Talk directly to the person with a developmental disability. Ask for help interpreting from the accompanying person if necessary.
• People in our society are allowed to make bad personal decisions within certain limits. People with disabilities also are allowed to make bad personal decisions, but, again, the person should have the capability of understanding the consequences.
• Substitute Medical Decision-Makers
  
  When a person is not capable of making a medical decision themselves, the team may have to look for an alternate decision maker. The following are points that deserve consideration:
  
  Guardian
  
  
• Not all parents of adults are guardians.
• Make sure the guardian has authority over medical decisions and that the guardianship is current. Guardianship papers may have a specific time limit. They should be kept in the person's chart and kept current. If unsure of the status of the guardian, call the person's case manager.
• Health Care Representative appointed by the person.
  
  
• A person with a disability may not have the capability to make complex medical decisions but may be very capable of knowing who they trust to make those decisions. This is available to anyone in any living situation.
• Use the health care representative forms obtained from your local hospital, Home Health Agency, or Oregon Health Decisions at 1 (800) 422-4805.
• The person and only that person can make the decision to appoint a Health Care Representative. Two witnesses are required.
• Employees or owners of any type of residential service (group home, supported living, foster home, etc.) are prohibited from becoming the Health Care Representative, unless related by blood or marriage.
• Health Care Representative appointed by the ISP (Individual Support Plan) team.
  
  
• This is available only to individuals with developmental disabilities who live in group homes or supported living sites (or foster homes with a variance.)
• As a safeguard, the rule requires team consensus for significant medical decisions, including surgery.
• This health care representative is prohibited from withholding or withdrawing life support or gastric/jejunostomy tubes.
• Two members of the ISP team, one of which must be the case manager, must complete training offered by the Division before appointing a health care representative.
• Withholding or withdrawing life support can be authorized through Oregon state law (ORS 127.635).
  
  
• Applicable in situations where the person/ patient is terminal (will die even with treatment), permanently comatose, or end-stage Alzheimer's-like diseases.
• Creates a safe harbor (protection against law suits).
• Uses a hierarchy of family and friends.
• Family or friends
  
  
• Not authorized or prohibited from making medical decisions by state or federal law (statute or rule).
• Never been challenged in Oregon courts.
• Based on the premise that family and friends know what the person would have decided (substitute decision) and they hold the person's best interest at heart. Nurses should be cautious if family or friends give evidence otherwise.
• The definition of family and friends has been stretched at times to include the ISP team or members of that team.

Presumption of Consent