Advisory Council April 2014 Meeting Presentation: Council Ethics Subcommittee

ADVISORY COUNCIL ON ALZHEIMER'S RESEARCH, CARE, AND SERVICES

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.

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