Advisory Council July 2014 Meeting Presentation: Ethics Issues and Health Policy

Monday, July 21, 2014

Ethics Issues and Health Policy forAlzheimer's Disease

Tia Powell, MD
Director, Montefiore Einstein Center for Bioethics

Purpose of Ethics Sub-committee

• Response to FACA member concerns
• Identify ethics implications of both AD and proposed health policies
• Prioritize topics by importance, impact
• Indicate persons/institutions and mechanisms needed to address identified issues
  • Providers, government, industry?
  • Education, regulation, reimbursement?

Work to date

• Members: Laurel Coleman, David Hoffman, Jennifer Manly
• Ruth Katz, Rohini Khillan, Linda Elam, Tia Powell
• Conference Calls
  • Identification of goals
  • Prioritizing topics
  • HIPAA and dementia

HIPAA educational project

• Developed slide presentation
  • Define HIPAA: valve, not blockage
  • Assessment of decision-making capacity
  • Case based instruction
  • Specific guidance
• Presented to HRSA-funded GEC centers May
• Ongoing creation of audio tape for slides
• Planned distribution broadly to GEC centers

HIPAA project additional steps

• Supporting documents
  • Published literature
  • Possible HHS FAQ
• Further Dissemination

Additional Topics

• Caregiver Issues
• Support patient autonomy while noting interdependence of patient and care-giver
  • Access to web-based patient information portals
  • Robust inclusion in care plan, implementation
  • Support for patient AND family, not VS

Research Issues

• Surrogate consent for research
• Consequences of research data in EMR
  • Benefit to patient care from data
  • Potential harm in lack of protected access to long-term care insurance, life insurance
• Big Data:
  • Balancing privacy protections and benefit of harnessing power of data
  • Promoting International collaborations
  • Coordinating best practices, guidance

Severe Dementia and nutrition

• Feeding Tubes in severe dementia
  • No benefit duration, quality of life
  • Increased pressure sores
  • Choosing Wisely recommendation
• NAPA IOM Collaboration: Severe Dementia
• Ongoing work, completed 2015

Future for Ethics Sub-committee

• Additional Topics?
• Completion of Health and Aging Policy Fellowship
• Continued need for ethics input