Palliative and End-of-Life Care in PACE: Guidelines and Resources. Dory Funk, MD David Wensel, DO, FAAHPM Tom Smith, LCSW

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Palliative and End-of-Life Care in PACE: Guidelines and Resources Dory Funk, MD David Wensel, DO, FAAHPM Tom Smith, LCSW 1

Traditional Care Model Aggressive medical care Hospice care Time Death 2

3 Transitions Care Model Curative Palliative Care EOL Bereavement Time Death

PACE End of Life Care Physician Nursing Care (Including In-Home) Medical & Specialty Care Spiritual Care Social Work Family Participant Friends Hospital Stays Homemaker & Personal Care Recreation Therapy Rehabilitation Services Adult Day Care Prescription Medication

Final Years in PACE Death Curative Curative/Palliative Palliative Social Work D.C. Provider Nurses & In-Home Specialist Social Work Provider Nurses & In-Home Specialist Living Legacy Chaplain Nurses & In-Home Rehab Surgery D.C. Rehab Surgery Social Work

A Good Death Ppt and family Control over the process Environment of their choice Trust in caregivers Treated with Dignity and Respect Feeling supported Address tasks of dying Closure Palliative/EOL Care Participant and family at center of care at all times Open communication Management of pain Symptom control Address suffering Spiritual concerns Honor wishes

CMS PACE Regulations: EOL Care Since comprehensive care is provided to PACE participants, those participants who need end-oflife care will receive the appropriate medical, pharmaceutical, and psychosocial services through the PACE organization.

Workgroup History 2011 presentations at NPA Annual Conferences Collaborations with other PACE Organizations 2014 Initial discussion 2015 PCC and NPA support PCC Survey Presentation 1 st official meting at NPA annual conference

PACE Palliative and End-of-Life Care Survey Demographic Information 30 PACE organizations Years of operation: 0-5: 5 5-10: 12 15-25: 13 Census: 0-200: 11 200-400: 10 400-600: 5 700-1114: 4

Survey Questions and Responses How you define palliative and end-oflife care? How do you determine participants in need of palliative and end-of-life care?

Survey Questions and Responses What kind of Palliative and End-of-Life training do you provide to all staff? Do you have a chaplain as part of your team? Do you have a system for assessing and addressing grief with participants, family, staff?

Please identify the top three EOL activities or resources in which your PO would be interested:

Palliative and End-of-Life Care Workgroup I. Workgroup 2016 Purpose: To enhance Palliative and End-of-Life care in PACE organizations across the nation Co-Chairs: Dory Funk and Tom Smith II. Operational Resources T.F. Chair: Dory Funk Definitions & Guidelines III. Training Resources T.F. Chair: David Wensel Training modules

Workgroup and Task Force Members Dory Funk Senior CommUnity Care of Colorado Medical Director Maria DePasquale Community LIFE Palliative Care RN Thomas Bracken Community LIFE Senior Chaplain Suzanne Hartmann Community LIFE Primary Care Physician David Wensel Midland Care PACE Medical Director Peter DeGolia McGregor PACE Medical Director Craig Bethune Care Resources Physician Eric Baum McGregor PACE Nurse Practitioner Tom Smith Senior CommUnity Care of Colorado Regional Palliative/EOL Coor. Igmara Prunier Riverside PACE Chaplain Ellen Doyle NewCourtland Senior Services Nurse Practitioner Amy Denham Piedmont Health SeniorCare Physician Claudine Clarke NewCourtland Senior Services Medical Director Mary Obee Riverside PACE Learning & Development Manager Laural Aiesi Summit ElderCare Clinical Nurse Manager Amol Ekhande Genesys PACE of Genesee County Medical Director Sharon Reilly Piedmont Health SeniorCare Medical Director Monica Updyke SeniorLIFE Johnstown CRNP Lisa Mayo Riverside PACE Nurse Randy Ferrance Riverside PACE Physician Elizabeth Grady East Boston Elder Service Plan Tara Horr McGregor PACE Physician Emily Krueger ElderONE Advanced Practice Practitioner Shawn Bloom National PACE Association President and CEO Rhonda Rose National PACE Association SVP, Finance & Administration Sarah Booth Providence ElderPlace in Portland Social Work Program Manager Adam Burrows Upham's Elder Service Plan/PACE Medical Director Susan Nelson PACE Baton Rouge Medical Director Susan Nelson PACE Baton Rouge Medical Director Susan Nelson PACE Baton Rouge Medical Director Luz Ramos-Bonner NewCourtland Senior Services Network Medical Director Elizabeth Canino PACE Organization of Rhode Island Nurse Practitioner Le'Roi Gill Mercy LIFE - West Philadelphia Chaplain Mary Gorman East Boston Elder Service Plan Nurse Practitioner

Operational Resources Task Force Definitions Guidelines Politics anyone?

Difficult Definitions

Palliative Care Palliative care in PACE is participant and familycentered care coordinated by the IDT which is directed toward improving quality of life and relieving suffering. It addresses physical, psychological, social, and spiritual needs of the participant and family in the setting of serious illness. Palliative care may be provided concurrently with curative strategies. Focus is clarified through the alignment of goals of care.

End-of-Life Care End-of-life Care in PACE is participant and familycentered care coordinated by the IDT which is directed toward improving quality of life and relieving suffering in the last months, weeks, days of life when the goal of care is no longer curative. It addresses physical, psychological, social, and spiritual needs of the participant and family in the setting of advanced life-limiting illness. Focus is clarified through the alignment of goals of care.

EOL Care Operational Guideline To provide quality patient and family centered care for participants through the end of life via comprehensive interdisciplinary care with attention to the relief of suffering, effective communication, care for the dying and bereaved, and quality improvement. Intent is to perform this care in the home whenever possible.

Guidelines: Procedure Procedure: EOL Committee Participant Orientation Criteria for Ppts to receive EOL care Family care conference Criteria for includes on transition care monitoring list Monitoring status Homebound Ppts Institutional setting At time of death Bereavement Care

End of Life Committee Required (core membership): Physician or Nurse Practitioner Day Center Director Registered Nurse Social Worker In-home Services Supervisor

Other members of the EOL Committee can include but is not limited to: Certified Nursing Assistants or Personal Care Assistants Dietician Physical Therapy Occupational Therapy Transportation Therapeutic Recreation Pharmacy Personnel Chaplain (highly recommended)

More on the EOL committee Frequency of EOL Committee meetings: Guideline Review Goals and functions

Goals and Functions promote quality end-of-life for the participants and participant s families actively monitor the participants who are receiving EOL services. review and maintain the end-of-life educational materials that are given to families and participants coordinate, and promote continuing education and provide clinical support specific to end-of-life care for staff.

New Participant Orientation During intake process At initial assessment At post-enrollment care conference if applicable Ongoing as appropriate

Criteria for participants to receive end-of-life care

Criteria for participants to receive end-of-life care Any member of the PACE interdisciplinary team may alert Life limiting diagnosis likelihood of death within about six months Participant and family agreement to primarily palliative medical treatment for current medical problems.

Initial implementation of end-oflife care: family care conference

Initial implementation of end-oflife care: family care conference

Initial implementation of end-oflife care: family care conference Presentation to the participant and family that the participant is approaching end-of-life. Participant and family wishes and needs. Advance care planning and code status documentation, Purpose and goals of EOL care Functions of the EOL committee. The plan to be enacted at the participant s death

And the rest of the document Transitional care criteria, monitoring (RADAR LOVE) Organizational Monitoring of EOL participant status Homebound Participants End-of-life services in an institutional setting At time of death and/or immediately after death

And the rest of the document Bereavement care

Training Resources Task Force 10 Training Modules 15-20 slides each Each module has 3 learning objectives Talking points in the notes section Created to be presented in approximately 30 mins

1. Introduction to Palliative and End-of-Life Care in PACE Author: Tom Smith, LCSW Learning objectives: Understand the Philosophy of Palliative and end-of-life care in PACE Define Palliative and End-of-Life Care in PACE Introduce Key topics in providing high quality palliative and end-of-life care in PACE.

2. Advanced Care Planning: Conversations Do Change Lives! Author: Susan E. Nelson, MD, FACP, FAAHPM Learning objectives: Discuss importance of advance care planning Review advance care planning documents Advance Directives/Present Directives Health Care Power of Attorney Discuss Physician Order for Life Sustaining Treatment (POLST)

3. Trajectories and Symptoms Author: David Wensel DO, FAAHPM Learning objectives: Definition of End-of-Life Difference between hospice and palliative care Define common symptoms at End-of-Life

4. Self-Exploration Let s get personal Author: Ellen D. Doyle, CRNP,CS Learning objectives: Have greater comfort in exploring personal End of Life decisions Begin to formulate a document for communicating personal End of Life wishes Have an increased comfort in discussing End of Life wishes with loved ones.

5. Communication and Difficult Conversations: We can do this! Author: Maria DePasquale RN, CHPN Learning objectives: Describe communication processes and challenges in the setting of serious illness Define important elements to ongoing communication and factors that influence communication with participants and families Identify techniques for communicating bad news and discussing goals of care with participants and families

6. Family Dynamics The Good, The Bad, & the Ugly Author: Maria DePasquale RN, CHPN Learning objectives: Identify 3 patterns of relating within families Define 3 important elements that influence how a family functions together Describe 2 strategies for communication within family conflict

7. Cultural Considerations Author: Rev. Dr. Le Roi Gil, J.D. Learning objectives: To raise awareness of and enhance the care for people at end of life To honor and appreciate cultural diversity To understand how cultural factors influence end of life decision making

8. Loss, Grief, and Bereavement Author: Tom Smith, LCSW Learning objectives: Define Loss, Grief, and Bereavement Understand the basic types of grief Anticipatory Normal Complicated Discuss supportive techniques and resources

9. Ethical Issues Author: Rev. Thomas F. Bracken Jr. D Min Learning objectives: Address ethical questions that arise when treating the dying patient To understand the impact of healthcare decisions This overview will provide a starting place for those wishing to explore the complex subject of death and dying

10. Final Hours Author: Lisa G. Mayo, RN Learning objectives: Sign and symptoms of imminent death Assessment of needs and interventions for the dying patient and family Care following death

How to access resources NPA members NPA Website Member Resources Participant Care Resources http://www.npaonline.org/memberresources/participant-care-resources

Introduction to Case Studies Election of Hospice Benefit PACE Hospice Collaboration with Hospice Agency PACE Hospice In-house Palliative &EOL program In-house Palliative & EOL Program 45

Panel Discussion/Questions