Advisory Council January 2015 Meeting Presentation: Advanced Dementia Panel

Monday, January 26, 2015

Washington, D.C.

Advanced Dementia Expert Panel Summary and Key Recommendations

Objectives

• To convene experts to review current research, innovative practices, and health policy pertinent to the care of persons with advanced dementia and their families, and
• To make recommendations to HHS and the NAPA Advisory Council about priority initiatives to improve that care.

Rationale

• ~ 1,000,000 Americans with advanced dementia
• Pressing need to provide high quality care for these persons and families
• Special considerations

Advanced Dementia

• Vulnerable population with unique needs
• Severe functional and cognitive impairment
• Reliance on surrogate decision-making
• Cannot live alone
• Family/caregiver burden

Organization

• Co-Chairs: Susan Mitchell MD MPH, and Laurel Coleman MD
• Facilitator: Katie Maslow, IOM
• Core Group: Attend all meetings, formulate final recommendations
• Experts: Specific meetings
• Observers: public, professional and provider organizations, advocates, and staff from many federal agencies (AoA/ACL, AHRQ, ASPE. CDC,CMS, HRSA, NIA, NINR, SAMHSA, and VA)

Core Group +

• Co-Chairs: Coleman, Mitchell
• A. Bonner PhD: Northeastern, policy
• S. Brangman MD: SUNY, care delivery, education
• M. Ersek RN: UPenn, nursing, research, care delivery
• L. Hanson MD, MPH: UNC, clinical research
• R. Sean Morrison MD: Mount Sinai, research, policy
• Also participated in drafting final recommendations
  • D. Meier MD: Center to Advance Palliative Care, policy
  • M. Gallagher DNP: Hospice of the Valley, care delivery
  • G. Sachs MD: Indiana University, clinical research
  • J. Teno MD: Brown University, clinical and policy research
  • D. Hoffman: NY State Health Department, public policy

Meetings

1. Research
   • January 28, 2014
2. Clinical Practice
   • September 28, 2014
3. Policy
   • January 21, 2015

Research: Participants

• Core Group
• Invited Experts
  • Marilyn Albert, PhD
  • Ken Covinsky, MD
  • Joan Teno MD, MSc
  • Richard Schultz, PhD
  • Constantine Lyketsos, PhD
  • Greg Sachs, MD
• Observers

Research: Agenda

• Advanced Dementia Research Overview- Mitchell
• Patient Experience- Hanson
• Family Experience- Ersek
• Health Services Utilization- Teno
• Infrastructure and Funding-Morrison

Research: Main Conclusions

• 25 years of research
• Design: Descriptive >>> intervention
• Methodology: Database = primary
• Setting: nursing home> hospital> community
• Focus: Feeding tubes > infections > hospice > decision-making > prognosis > family > costs
• Knowledge: Delineated problems and main targets to improve care
• Clinical Course
  • Terminal condition, prognostication difficult
• Sources of Distress
  • Treatable symptoms, measurement challenges
• Treatment of clinical complications
  • Feeding and infections most common
  • Tube-feeding has no benefit, overuse of antibiotics
• Health services
  • Hospice helps but under-utilized
  • Hospital: common, costly, burdensome, avoidable
  • Misuse of Skilled Nursing Facility (post acute care)
  • Disparities
• Strategies to improve care
  • Mostly observational: Advance care planning, hospice,
  • Two RCTs: decision support tools
• Clearly delineated opportunities to improve care
• Current research priority: determine how to address opportunities
  • Design and test clinical interventions and models of care to improve advanced dementia care
  • Design and evaluate health policy initiatives that incentivize high quality goal-directed care

Clinical Practice: Participants

• Core Group
• Invited Experts
  • Margaret Noel MD – MemoryCare
  • Jody Comart PhD - Hebrew Senior Life
  • Jed Levine - NY Chapter of Alzheimer’s Association
  • Ashley Shreves MD – Mt. Sinai Hospital, NY
  • Maribeth Gallagher DNP – Hospice of the Valley
  • Dayna Cooper MSN – VA Geriatrics and Extended Care
  • Greg Sachs MD – Indiana University
  • Ann Wyatt MSW – Alzheimer’s Association consultant
  • Tena Alonzo MA – Beatitudes CCRC

Clinical Practice: Agenda

• Innovative practices in care for persons with advanced dementia in:
  • Nursing homes
  • At home and in the community
  • In hospice
  • In the hospital and emergency department
  • Support and training for families and other caregivers

Clinical Practice: Main Conclusions

• Nursing Home Program – Beatitudes
  • High family and staff satisfaction
  • Low medication use and reduced hospital and ER use.
• Community programs –
  • Focus on palliative care - support for family/caregivers
  • Advance care planning is common theme.
  • Persons with dementia are less likely to die in the hospital and have lower levels of pain and distress.
• Hospice Program
  • Published results with lower use of restraints, feeding tubes, lower rates of hospitalizations.
  • Works cooperatively with long term care facilities
  • Excellent symptom management and family satisfaction.
• New strategies and programs –
  • All show promising results: training family caregivers, ER consultations, printed guides for advance care planning/education.
• Very POSITIVE and encouraging day for all.
• Challenges
  • Promising programs are slow to “scale up” and replicate
  • Programs merit broader evaluation
  • Successful programs need good leaders and culture change
  • Are there policy incentives/ and regulatory “levers” that could hasten implementation of these models?

Policy: Participants

• Core Group - and David Hoffman
• Invited Experts:
  • Diane Meier MD: Mt. Sinai Hospital, CAPC
  • Joan Teno MD: Brown University
  • Susan Miller PhD: Brown University
  • David Grabowski PhD: Harvard University
  • Greg Sachs MD: Indiana University

Policy: Agenda

• Transforming care for persons with advanced dementia – what will it take?
• How do we measure quality for this population?
• Policy barriers and opportunities for providing good care in various settings:
  • Home and community
  • Nursing home
  • Hospice
  • Hospital and care transitions

Policy: Main Conclusions

• Very complex policy issues with high risk for unintended consequences
• Lack of access to palliative care
• Long-term care: complex fiscal and regulatory policies create misaligned incentives that promote poor care
• Hospice: problems with access for persons with dementia, documentation of dementia diagnosis, and coordination with the Medicare SNF benefit
• Home and community care: Large number of persons with advanced dementia but little information about specific needs
• Acute and sub-acute care settings and services: High use but care is often not beneficial
• Quality metrics: many unique issues for advanced dementia

Final Recommendations

• Formulated by Core Group
• Principles
  • Focus on advanced dementia
  • Build from and fill gaps in the existing National Plan
  • Not iterative of other federal initiatives
  • Focus on priorities
  • Feasible

Over-Arching Goal

• To ensure the quality of life and quality of care for persons living with advanced dementia and their families across care settings

Strategy 1

• To ensure access to high quality palliative care for persons with advanced dementia and their families across all settings
  • Primary palliative care
  • Palliative care consultation
  • Hospice
    • Beneficial but …
    • Major access concerns

What is Palliative Care?

• Specialized medical care for persons with serious illnesses.
• Relief from the symptoms, pain, and stress of a serious illness - whatever the diagnosis.
• Improves quality of life for the person and family.
• Team of doctors, nurses, and other specialists who work with a person's other doctors to provide an extra layer of support.
• Appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatments.

Strategy 2

• Prepare a workforce that is competent to deliver care to persons with advanced dementia and their families
  • Healthcare workers (nurses, physicians, direct care workers, social workers) and long-term services and supports (e.g., transportation, meals)
  • Culturally competent
  • Across all settings
  • New and existing workers

Strategy 3

• Incentivize documentation and tracking of level of functional and cognitive status to identify people with advanced dementia
  • Harmonize documentation across settings
  • Critical to care, research, program evaluation, and policy

Strategy 4

• Support research, evaluation and dissemination of models of care to meet the needs of persons with advanced dementia and their families
  • Across care settings
  • Align payment and delivery
  • Unique considerations that merit focus on advanced dementia

Strategy 5

• Leverage existing mechanisms to ensure access to high quality care for persons with advanced dementia and their families
• Examples: payment, regulatory, and public reporting
  • Consider existing infrastructure, e.g. state coalitions to improve dementia care, QIOs (Quality Improvement Organizations), HHS Partnership for Patients

Strategy 6

• Support quality metrics that ensure transparency and accountability for the care of persons with advanced dementia and their families
  • Must include proxy reporting (e.g. family, nurse)
  • Examples of unique metrics
    • Effective symptom assessment and management
    • Burdensome, non-beneficial treatments (e.g., tube feeding, transitions)
    • Care concordant with values and preferences
  • Critical for clinical care accountability and research and policy evaluation