1. Cultivating Meaningful Conversations to Guide Care: An Initiative to Encourage End-Of-Life- Care Planning for People with Dementia Elizabeth Balsam Hart, MD MaineGeneral Health

2. With thanks for the generous support of: The Atlantic Philanthropies The John A. Hartford Foundation The Practice Change Fellows Program The ACE Pod The Maine Hospice Council The Maine Office of Elder Services The Institute for Health Policy

3. Nature of the Problem Essential conversations about goals of care for people with advanced dementia often occur when a specific decision needs to be made, frequently in a crisis, rather than serving as an anticipatory guiding set of principles based on patient and family choices Despite the prevalent belief that comfort-focused care may best meet the needs of people with advanced dementia, palliative approaches may not be adopted until death is imminent

4. Approach Give voice to patients’ wishes for medical intervention Establish overall goals of care Anticipate specific treatment decisions that may be faced Adopt palliative approaches and hospice care when desired by the patient or proxy

5. Approach To create systems to facilitate essential goals of care conversations for people with dementia To train social workers, nurses and physicians in these systems To foster awareness of dementia as a terminal disease for which aggressive interventions may be inappropriate, unwanted by the patient, costly and unsuccessful, while carrying significant risk of harm

6. Target Population Residents of MaineGeneral Health’s long-term and residential care facilities who have dementia Those with diagnoses of dementia who are anticipated to be moving to these facilities –upon transfer from the inpatient setting –in outpatient visits with our geriatric assessment team or geriatric fellows

7. Tool # 1 to Be Introduced to Facilitate Conversations and Assure Documentation : Physician Orders for Life-Sustaining Treatment (POLST) form to guide conversations and assure documentation of preferences for: Resuscitation (Do Not Resuscitate/Allow Natural Death vs. Attempt Resuscitation) Do not transfer to hospital/comfort focused care orders (place of care and level of intervention) Withholding or pursuing antibiotic therapy, artificial hydration and artificial nutrition

8. Pilot as a Leader for POLST Statewide Initiative Coalition advocating for POLST recognition Working with Attorney General’s office to finalize a form to be adopted statewide Goal is parallel process to develop POLST recognition throughout the State

9. Tool # 2 to Be Introduced to Facilitate Conversations and Assure Documentation: Implementation of a risk score, which estimates 6-month mortality in dementia more accurately than existing prognostic guidelines, to trigger consideration of hospice referrals and palliative approaches in long-term care Mortality Risk Index (MRI) based on Minimum Data Set (MDS) which is already collected by all Medicare and Medicaid certified nursing facilities, on admission, and quarterly Mitchell et al JAMA 2004:291

10. Potential Outcomes Indicating Successful Implementation : Positive evaluation of staff training efforts Increased adoption of palliative care plans and POLST forms, which successfully guide care Decreased rates of hospitalization/aggressive care Increased hospice referral rates with longer average length of stay Retrospective review of charts of those whom MRI predicted to have prognosis of < 6 months Improved bereaved family members’ satisfaction

11. Project Timeline September 2008 – January 2009 –Project planning, stakeholder outreach, outcomes assessment consultation and planning, including data collection to document current status of baseline measures January 2009 – June 2010 –Core 18 month implementation phase July – August 2010 –Outcomes Assessment and Evaluation

12. Facilitators Integrated healthcare system with supportive senior leadership Established geriatric, hospice and palliative care programs with strong interdisciplinary models Support for building bridges between geriatric and palliative care teams Systems which are readily compatible with current practice and thus sustainable

13. Facilitator for Sustainability - Collaborative Community Partnership: Implementation and dissemination facilitated by: Office of Elder Services of the Maine Department of Health and Human Services Maine Hospice Council and Center for End-of- Life Care Institute for Health Policy at the Muskie School of Public Service of the University of Southern Maine

14. Potential Barriers Time pressures and inadequate reimbursement limit conversations Difficulty predicting prognosis in dementia and anticipating when incremental decline becomes terminal decline Restrictiveness of Hospice Dementia Guideline Hospice challenges with increased scrutiny of Medicare Hospice in LTC (e.g. Office of Inspector General FY 2009 OIG work plan)

15. Potential Barriers Provider and family resistance; misunderstanding, lack of awareness and biases about palliative care and hospice Lack of an electronic record in the long-term care setting Fragile and fragmented methods of communication of preferences and orders between sites of care

16. “If you want to change the world, you need to change the metaphor”