Tuesday, April 29, 2014
NAPA Advisory Council Ethics Subcommittee
Tia Powell, MD
Director, Montefiore Einstein
Center for Bioethics
Role of ethics in health policy for Alzheimer's Disease
- Support autonomy
- Protect vulnerability
- Balance rights/needs of AD patients and those of family, community
- Promote research
- For all phases of AD
- Protect research subjects
Goals of the Subcommittee
- Identify key ethics issues around Alzheimer's Disease and Related Dementias
- Determine which issues have highest priority
- Determine their scale and impact
- Determine which might be actionable
- Promote discussion
- Identify members' concerns
- Inform policy recommendations with ethics perspective
- Laurel Coleman
- David Hoffman
- Jennifer Manly
- With input from Nina Silverberg and others from the Dementias of Aging Branch in the Division of Neuroscience at NIA
- Monthly calls to identify key AD ethics issues
- Presentation on findings at July Advisory Council meeting
- Final document, with subcommittee member input
Topics to Consider
- Health Privacy and Disclosure of AD Diagnosis: Educational Proposal
- Feeding Tubes and Severe Dementia
- Promoting AD Research
- Research on Later Stage AD
Health Privacy and Disclosure of AD Diagnosis: Educational Proposal
- Patients may request clinician NOT disclose AD to family
- What does HIPAA require? Forbid?
- What is responsibility of clinician?
- When do families have right to know?
- Assessment of Decisional Capacity
- Case Specific Recommendations
Feeding Tubes and Severe Dementia
- NAPA Severe Dementia IOM Workshop
- Feeding Tubes in severe dementia
- No benefit on duration or quality of life
- Increase in pressure sores
- Geographic variation
- Health policies as perverse incentive?
- Promote best practices
- Oral nutrition programs
Promoting AD Research
- Research on “pre-clinical” AD
- Large numbers of currently healthy volunteers
- 1/3 over 65 show plaques/tangles
- 11% over 65 have AD symptoms
- Inclusion of research medical data in EMR?
- Lack of protections for:
- Long term care insurance
- Life insurance
Research on Later Stage AD
- Safely staying at home
- Built environment
- Support without intrusion
- Support for caregivers
- Better institutional care
- Non-pharmacological interventions
Tia Powell, MD
- Karlawish J, Moral and Ethical Challenges of Alzheimer's Disease, Health Affairs, 2014.
- M O'Neil, A Systematic Evidence Review of Non-pharmacological Interventions for Behavioral Symptoms of Dementia, VHA, 2011.
- Hanson et al, Improving Decision-making for feeding options in advanced dementia, JAGS, 2011.
- Schulz et al, Predictors of Complicated Grief among Dementia Caregivers, Am J Geriatr Psychiatry, 2006.
- Gessert et al, Rural-urban differences in medical care for nursing home residents with severe dementia, JAGS, 2006.
- Mitchell SL et al, Clinical and Organizational Factors Associated with Feeding Tube Use, JAMA, 2003.