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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

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.