Answer 4.1 and Related Resources

We do not know Ms. Tester’s level of ability to make her own decisions.  Her ability may have changed as dementia developed.  It would be important for the physician to assess Ms. Tester’s ability to understand her condition and the proposed treatment before determining whether she can give consent.

In addition, it is important to make sure that information is communicated to Ms. Tester in an accessible manner, using plain language and a format that takes into account her abilities and needs.  Refer to the following scenarios in Module 2 for information on how to optimize communication:  Scenario 6 – Use of technology to enable effective communication by and with people with I/DD (  and  Scenario 7 – Communication with people with sensory challenges such as hearing loss and visual impairment, in the context of health and wellness services and supports  (

The American Medical Association’s Code of Ethics states that generally, any procedure where there is risk to the patient requires informed consent.   The elements of informed consent include communicating with the patient about:

  • The patient’s diagnosis, if known;
  • The nature and purpose of a proposed treatment or procedure;
  • The risks and benefits of a proposed treatment or procedure;
  • Alternatives (regardless of their cost or the extent to which the treatment options are covered by health insurance);
  • The risks and benefits of the alternative treatment or procedure; and
  • The risks and benefits of not receiving or undergoing a treatment or procedure.
  • An opportunity for the patient to ask questions/discuss options

Please refer to the discussion and resources on decision-making and consent in Case 1, Question 1.7 at

Here are additional resources that can help people with ID,  family members and care providers to make decisions concerning guardianship:

Question 4.2
If Ms. Tester is unable to provide consent, how can she obtain diagnostic testing and medical treatment for her suspected cancer?

View answer and related resources