Ethical Issues in Decision-Making and End-of-Life Care

Katie Maslow Scholar-in-Residence Institute of Medicine May 22, 2012

Decision-Making Situations and Related Stories

Driving

End-of-life treatment, palliative care, and death squads

Spending his/her own money Living at home alone

Risky behaviors (cooking/smoking) in an apartment or other group living setting

Nursing home placement Use of medications to reduce behavioral symptoms when the medications increase cognitive impairment and other health risks Research participation and treating asymptomatic disease Other

Six Factors To Consider:

1. Is it Alzheimers/other dementia/mixed dementia /MCI/CIND/presymptomatic Alzheimers
Most people dont have a diagnosis you can be sure of
Undiagnosed Inaccurate, misunderstood, misreported diagnoses

Many people have mixed dementia Many people have cognitive impairment/no dementia

Some/many people have presymptomatic dementia-related pathology

Six Factors To Consider:

2. Age and Stage
Age range: 30 100+
Different life situations Different expectations Different societal attitudes and myths

Stage of disease/condition
Mild /// moderate /// severe Is the disease/condition intrinsically progressive Change over time

Six Factors To Consider:

3. Affected Cognitive and Other Neurological Functions

Memory: often short-term memory first, then longer term memory Ability to learn new things Ability to think abstractly Ability to make sound decisions Ability to plan (sequence) and carry out multi-step tasks Ability to generate coherent speech and understand spoken or written language Ability to recognize familiar objects and know what theyre for Other neurological functions: vision, gait, balance, other

Six Factors To Consider:

4. Co-existing Medical Conditions
Most older people with dementia have co-existing medical conditions. 2009 Medicare data show that among people age 65+ with dementia: 30% had coronary heart disease 29% had diabetes 22% had congestive heart failure 17% had chronic obstructive pulmonary disease (COPD) 14% had stroke 9% had cancer

Alzheimers Association, 2012 Alzheimers Disease Facts and Figures

Six Factors To Consider:

5. Family, Friends and Other Involved People
Who are the family members: spouse, adult children, others Does the person live with a caregiver(s) Who else is involved: neighbors, friends, apartment manager What do they think about the persons cognitive impairment What are their perceived roles and responsibilities to the person and otherwise What are their cultural and religious beliefs and values Do they perceive that the person is suffering Do they experience caregiver burden, benefits or both Do they agree with each other about important decisions Change over time

Six Factors To Consider:

6. Societal Considerations
Risks to others
Costs and resource use Messages (intended or unintended but heard) about:
The value of individuals Cognition // intelligence and race/ethnicity The roles and responsibilities of family members/others Competing needs of other groups and generations

Issue: Driving
Is it Alzheimers/other dementia/mixed dementia /MCI/CIND/ presymptomatic Alzheimers? Age and stage Affected cognitive and other neurological functions Co-existing medical conditions Family, friends and other involved people Societal considerations

Issue: End-of-life treatment and death squads

Is it Alzheimers/other dementia/mixed dementia /MCI/CIND/ presymptomatic Alzheimers? Age and stage Affected cognitive and other neurological functions Co-existing medical conditions Family, friends and other involved people Societal considerations

Issue: Spending his/her own money

Is it Alzheimers/other dementia/mixed dementia /MCI/CIND/ presymptomatic Alzheimers? Age and stage Affected cognitive and other neurological functions Co-existing medical conditions Family, friends and other involved people Societal considerations

Other
Is it Alzheimers/other dementia/mixed dementia /MCI/CIND/ presymptomatic Alzheimers? Age and stage Affected cognitive and other neurological functions Co-existing medical conditions Family, friends and other involved people Societal considerations