From the Guidelines
To assess decision-making capacity in someone with trisomy 21, evaluate the four key elements of capacity: understanding, appreciation, reasoning, and choice, using simple language, visual aids, and involving familiar caregivers as necessary, as outlined in the framework for decisional capacity 1. When assessing decision-making capacity, it is essential to consider the individual's ability to make a meaningful decision about a particular treatment. This involves evaluating their understanding of relevant information, appreciation of the situation and its consequences, reasoning about treatment options, and communicating a choice.
- Key elements of capacity include:
- Understanding of relevant information
- Appreciation of the situation and its consequences
- Reasoning about treatment options
- Communicating a choice In patients with cognitive impairment, such as those with trisomy 21, decisional capacity must be evaluated when obtaining informed consent, taking into account the complex nature of treatment and potential limitations faced by the individual 1.
- Considerations for assessment include:
- Using simple language and visual aids to facilitate understanding
- Involving familiar caregivers who understand the person's communication style
- Allowing extra time for processing information
- Recognizing that capacity is decision-specific and may fluctuate It is crucial to avoid making assumptions based solely on diagnosis, as cognitive abilities vary widely among people with trisomy 21. Instead, a thorough assessment should be conducted, documenting specific accommodations made and the person's demonstrated abilities 1.
- If capacity is limited, consider supported decision-making approaches before pursuing more restrictive options like guardianship, prioritizing a person-centered approach that respects autonomy while providing appropriate support based on individual needs.
From the Research
Assessing Decision-Making Capacity in Individuals with Trisomy 21
To assess the decision-making capacity of someone with trisomy 21, the following factors should be considered:
- The ability of the patient to understand the benefits and risks of, and the alternatives to, a proposed treatment or intervention (including no treatment) 2
- The patient's ability to demonstrate understanding of the situation, appreciation of the consequences of their decision, and reasoning in their thought process, and if they can communicate their wishes 2
- The presence of any risk factors for impaired decision making, such as an acute change in mental status or readily agreeing to an invasive or risky procedure without adequately considering the risks and benefits 2
Formal Assessment Tools and Consultation
- Several formal assessment tools are available to help with the capacity evaluation, and consultation with a psychiatrist may be helpful in some cases 2
- A structured approach is best, and any physician can evaluate capacity 2
- If a patient is found not to have capacity, a surrogate decision maker should be identified and consulted 2
Considerations for Individuals with Trisomy 21
- Trisomy 21, or Down syndrome, is a chromosomal disorder that can result in intellectual disability and other clinical features 3, 4
- Individuals with trisomy 21 may have varying levels of decision-making capacity, and a thorough assessment is necessary to determine their ability to make informed decisions 2, 5
- Clinicians should be aware of the potential for impaired decision making in individuals with trisomy 21 and take a patient-centered approach to assessing capacity 2, 6
Responding to Refusal of Assessment
- If a patient refuses to undergo an assessment of decision-making capacity, clinicians should consider the potential reasons for this refusal and attempt to address any concerns or misconceptions 6
- In some cases, it may be necessary to treat the patient as if they were incompetent, but this should only be done after careful consideration and consultation with other healthcare professionals 6