Advisory Council April 2014 Meeting Presentation: Council Ethics Subcommittee

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

Facilitator Role

• Promote discussion
• Identify members' concerns
• Inform policy recommendations with ethics perspective

Subcommittee Members

• 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

Subcommittee Process

• 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
  • Staffing
  • 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

Contact information:

Tia Powell, MD
tpowell@montefiore.org

Sample References

1. Karlawish J, Moral and Ethical Challenges of Alzheimer's Disease, Health Affairs, 2014.
2. M O'Neil, A Systematic Evidence Review of Non-pharmacological Interventions for Behavioral Symptoms of Dementia, VHA, 2011.
3. Hanson et al, Improving Decision-making for feeding options in advanced dementia, JAGS, 2011.
4. Schulz et al, Predictors of Complicated Grief among Dementia Caregivers, Am J Geriatr Psychiatry, 2006.
5. Gessert et al, Rural-urban differences in medical care for nursing home residents with severe dementia, JAGS, 2006.
6. Mitchell SL et al, Clinical and Organizational Factors Associated with Feeding Tube Use, JAMA, 2003.