Medical Decision Making and Advance Care Planning Adults with Autism Medical Decision Making and Advance Care Planning

Statistics 1 in 150 children born in 1992 were identified as having Autism Spectrum Disorder (ASD) 1 in 68 children born in 2004 were identified as being on the spectrum Estimated that 1% of adults meet criteria for ASD CDC reports 46% of people with ASD have above average intelligence

Statistics 2016 Alzheimer’s Disease Facts and Figures report states that 1 in 9 people age 65 and older has Alzheimer’s The Aging Demographics and Memory Study (ADAMS) reports that 14% of people age 71 and older have dementia

Elderly with Autism Autism is thought to be highly underdiagnosed in the elderly Experts recommend the Autism-Spectrum Quotient (AQ) self report tool Autism Questionnaire for Relatives (AQ-R)

Informed consent Physician or other medical provider explains the risks and benefits of a particular procedure Patient evaluates information in light of values, and either consents or does not consent to procedure

Capacity vs. competence Competence is a legal term Competence is presumed in adults unless a court deems an individual incompetent Capacity: (a) recognize there is a decision to be made, (b) understand the needed information, (c) understand the treatment options, (d) understand the likely consequences of each option (i.e. risks, burdens, and benefits), and (e) rationally manipulate the information to come up with a decision consistent with his or her values. (cbdh.org)

Incapacity: what it is not Advanced age Eccentricity Refusal of care Disagreement in high risk situations Medical diagnosis Poverty

Advance Directives Patient Self Determination Act requires healthcare institutions to ask a patient if he or she has an advance directive If patient loses decisional capacity, a surrogate must make the decisions Ether guided by an advance directive Or in the absence of an advance directive

Surrogate Decision Maker Directed Decision-making: the individual’s wishes Delegated Decision-making: an appointed agent Devolved Decision-making: default hierarchy established by law Displaced Decision-making: court or administrative authority, e.g. Guardianship

Autism Spectrum Disorder (ASD) Definition: Persistent deficits in social communication and social interaction across multiple contexts Not on a linear spectrum of “low” and “high” Skills or challenges fall on multiple axes May have intellectual disability or normal IQs ASD may be primarily characterized by differences in information processing

Theory of mind The ability to attribute mental states to self and others in order to understand and predict behavior Autism seems to involve impairment specific to mentalizing Tager-Flusberg — some children with autism pass ToM task May be interpreted in terms of domain-general deficits in executive functions or language

Executive functioning Consists of several mental skills that help the brain organize and act on information EF enables people to plan, remember things, prioritize, pay attention and get started on tasks EF helps people use information and experiences from the past to solve current problems

Imagination and social anticipation Intellectually able children with ASD did not systematically differ from TD children in their tendency to report on the anticipated features of a person who will interview them in the future Children with ASD were less likely to state their response, that is, what they would say to the other person

Imagination and Creativity Creativity pertains to something original—the power of the mind to makes something appealing — use your imagination to create something Imagination refers to something that is forcefully thought — thinking of things that don’t exist

Dementia and ASD Depression may be a risk factor for developing dementia, may represent a predementia syndrome Patients with LOD (late-onset depression) and cognitive impairment develop dementia within a few years after onset of depression Studies show a higher prevalence of depression among children with ASD

Advance Care Planning Challenges for people with ASD Process information differently Social/legal structures and cognition

Challenges Understanding the content of advance directives? Difficulty conveying preferences? Who will be surrogate decision maker?

Challenges, cont. Many people have difficulty imagining their future selves Quality of life Helping individuals contemplate their future lives Default to best interest standards that may be informed by poor data and/or lack of understanding

Research opportunities Will future interventions be more or less onerous for people with ASD, e.g. being handled/touched by others-sensory overload Adults with ASD more or less likely than others to have someone close to them that they trust to make decisions Adapt advance directives to aid in successful understanding and facilitate completion of directive

Ideas and Suggestions Accommodations for sensory issues Adapt advance care planning discussions Allow for role play or detailed scenarios