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Understanding Aggression and Self-Injury: Medical Causes and Best Practices for Support 13
Improving Access to Health Care
Supported Decision Making
- Supported Decision Making (SDM) is a paradigm for
empowering people with cognitive, communication and physical disabilities to maintain their legal capacity, even if you need support to make decisions.
- SDM is an alternative to conservatorship, power of attorney,
- r protocols for unrepresented patients which transfer
decision-making to a third party
- A decision is understanding the options, weighing them
against each other and communicating a choice
- Capacity is not fixed (people can gain or lose it)
- Capacity is determined for a specific decision at a specific
moment in time
Understanding Aggression and Self-Injury: Medical Causes and Best Practices for Support 14
Improving Access to Health Care
Supported Decision Making
Understanding Aggression and Self-Injury: Medical Causes and Best Practices for Support 15
Improving Access to Health Care
Goals of Care Conversations
- The lives of people with disabilities are meaningful and valuable at
all stages and regardless of functional status
- Accommodations, adaptive equipment, access, inclusion and
participation improve quality of life
- Caregivers require resources and support
- People with functional limitations are usually much happier and
capable than they are judged to be by others
- Ability bias is pervasive and patients can internalize messages
(burden, suffering, unfortunate, tragic, bound, vegetable, heroic for simply being, childlike)
- It is terrifying to be dependent for care and support on people who
do not think your life is worth living
Clinical Differences: Elders vs. People with Disabilities
Elders People with Disabilities Functional limitation (often but not always) = advanced vital organ damage Functional limitation = stable, often healthy vital organs Functional decline is often a sign illness is nearing terminal stages Functional decline may not indicate terminal illness at all Poorly adjusted to living with disability - need supports Adjusted to living with disability - function better - may have supports in place Often don’t benefit from aggressive medical care Often benefit from aggressive medical care Short term memory problems interfere with success of habilitation and rehabilitation Short term memory usually intact and can learn new skills, even with cognitive disability If the problem is advanced dementia, age, or illness, enteral feeding and ventilation support is unlikely to extend life or improve quality If the problem is neuromuscular or mechanical, enteral feeding and ventilation support is life sustaining and can support an active, full life- style
