Palliative Care and Aging Veterans Maura Farrell Miller, PhD, ACHPN, GNP, PMHCNS, BC Director, Hospice and Palliative Care Program VA Medical Center West Palm Beach, Florida VHA ONS GEC FAC Hospice and Palliative Care

Outline History of Palliative Care integration Early efforts thwarted by unfunded national mandates CELC Funding FY 9-12 Palliative Care Consultation Teams at each VA Staffing for Inpatient Hospice Units “Strive for 65” Initiatives Ongoing Palliative Care Initiatives Quality Monitoring: Partnering with PROMISE Center Adapting to the needs of each facility Request for Proposals (RFP) Expanding Palliative Care Services

First things first A Definition Palliative Care * VA DIRECTIVES: VETERAN SWITH SERIOUS ILLNESS DO NOT HAVE TO BE TERMINAL OR HAVE TIME LIMITED PROGNOSIS. PALLIATIVE CARE PROVIDES AN ADDITIONAL LAYER OF SUPPORT TO PACT AND SPECIALISTS/VALUE ADDED * HPC PROGRAM PROVIDES FOR VETERANS’ PHYSICAL, EMOTIONAL, SPIRITUAL AND PSYCHOSOCIAL NEEDS DURING SERIOUS ILLNESS BY PROVIDING COMPASSIONATE CARE TO VETERANS AND A SUPPORT SYSTEM TO THEIR FAMILY AND LOVED ONES.  

Palliative Care End of Life Care Traditionally, Palliative Care followed failed aggressive care and was deferred until all aggressive treatments were exhausted and death seemed inevitable and imminent. It is an “extra layer of support” as some have characterized it, not coming after curative or life-prolonging therapy but concomitant with it.

EMBRACE PALLIATIVE CARE: WE CAN EASILY BECOME OVERWHELMED BY THE UNMET NEEDS FOR OUR SERVICES.

Palliative Care Both a philosophy and treatment approach, sometimes a location “palliative care unit” Based on Patient-Centered Care Reinforces VA “I-Care” Goals:   I-Integrity, C-Commitment, A-Advocacy, R-Respect, E-Excellence INTEGRITY, COMMITMENT, ADVOCACY, RESPECT, EXCELLENCE PALLIATIVE CARE HONORS PREFERENCES, MAINTAINS DIGNITY, PROVIDES COMPASSION AND COMFORT

“As a nurse, we have the opportunity to heal the heart, mind, soul and body of our patients, their families and ourselves. They may forget your name, but they will never forget how you made them feel.” - Maya Angelou

Palliative Care in Community Living Centers Effective and sensitive communication Aligning treatment with patient and family values, goals and preferences Support to families Assessment and management of symptoms WHERE ARE OUR AGING VETERANS? MOST ARE LIVING IN THE COMMUNITY HOME OR ALF, MEDICAL FOSTER HOME, STATE VETERANS HOMES. OTHERS IN CLC PROVIDE PALLIATIVE CARE IN THE RIGHT PLACE AT THE RIGHT TIME Beginning at the time of admission Regardless of the patient’s prognosis Provided by CLC Team, PCCT, or both

Why do we need Palliative Care? Early 1900s: Average life expectancy in 50s Child mortality high People died quickly (infections, accidents) Elderly folks were cared for (80% died at home) Intergeneration model of living children, parents, grandparents/extended family.

Why Palliative Care continued Increased life expectancy (M=73, F-79) Greater incidence of chronic disease and “prolonged dying” seen in > 80% of elderly patients Over 80% of older adults die in hospitals and nursing homes

Who should be referred? End-stage chronic diseases: Pulmonary disease Heart disease CVA and Coma HIV/AIDS Cancer Renal disease Liver disease ALS Alzheimer’s disease and Related disorders REMINDER DOES NOT HAVE TO HAVE LIFE LIMITING PROGNOSIS OF 6 MONTHS OR LESS.

Would I be surprised by this patient’s death within the next year? “The Question” Would I be surprised by this patient’s death within the next year?

FY 2000 Inpatient Deaths by Location 3 facilities with palliative care vs. national percentages VA no longer has Intermediate Medicine Purple = palliative care location of death Many of our aging Veterans LIVE AND DIE in Community Living Centers CELC funded palliative units were strategically placed in CLC

Why Palliative Care is important Untreated pain and other distressing symptoms Failure to address patient and family social, emotional and spiritual needs Poor communication with families Conflict among clinicians, patients and families Divergence of treatment goals from patient and family preferences Use of therapies for which burdens seem to outweigh the benefits Moral distress of clinicians (nurses) This list comes from a great deal of literature and experiences of VA clinicians.

How do we achieve quality palliative care? Consider PCCT consultations for all new CLC admissions….. PCCT and IDT meet with Veteran and Family Timely completion of Advance Directives Identify Veteran preferences for care Discussion about EOL goals Clarify expectations patient, family, staff Provide ongoing education and support Patient Centered Care is overarching philosophy Patient Self-Determination Act: patients have the right to be informed about their care and refuse care

Interventions to Consider… PCCT Consultation Rounds ICU Family Meetings include PCCT Palliative Care planning Nursing interventions: how do nursing staff demonstrate they care? How are interventions such as providing dignity, care, compassion, and respect documented? MDS day # 14 care planning unrealistic for hospice but is ok for palliative care TS 95 = palliative care/ Coding is important POLST

PALLIATIVE CARE ROUNDS Interdisciplinary Attending Physician or NP Other disciplines, Chaplain, RN, LPN, NA, Social Worker, Pharmacist, Music Therapist, Recreation Therapist Invite family to participate with Veteran: we treat them both Various types of rounds: Quality of Life Rounds, PCCT Consult Rounds, Daily assessment rounds

Palliative Care Plan Meetings Interdisciplinary Comprehensive Diagnosis and prognosis Goals of treatment Veteran and family needs and preferences Veteran and family understanding MDS/RAI customized for palliative care

Communication Challenges Communication Skills Lab for Nurses Dealing with Strong Emotions Dealing with Conflict Communication Skills for Nursing Assistants “Using Key Words at Key Times” Communication skills are very important for staff who are involved in palliative care, Family Meetings and MDS/RAI care plan meetings. Dr. Silverman suggests the Disney Training Model: Communication by inculcation [repeating the same words and behaviors until they become ingrained and second nature.) All the characters who sweep the streets are knowledgeable, courteous, helpful.

What are some of the problems you are experiencing? How to relieve suffering, especially when the Veteran is actively dying in the CLC…do we transfer him to the VA hospice unit or to community hospice? Ethical issues relating to conflicts between staff goals and the wishes of Veteran and/or family Cultural influences and Spiritual dilemmas Veterans’ unresolved past grief and loss Unresolved grief related to a previous loss may be impacting family’s coping 100 PERCENT SERVICE CONNECTED VETERANS SOME ENTIRE FAMILIES BENEFIT FROM SC DISABILITY MONTHLY ALLOTMENT “Someone’s dying & I don’t know what to say” “The family just doesn’t get it…they want everything done”

Partnering with the PROMISE Center Bereaved Family PROMISE Survey Family members rate care that the Veteran received from the VA in the last month of life including communication, emotional and spiritual support, pain management and personal care needs Overall, how would you rate the care that he received in the last month of his life? Excellent Good Very Good Fair Poor

It is easier to ride the horse in the direction it is going… Try not to get stuck in a maze…Give the right care at the right time in the right place. Palliative Care can be offered to any Veteran across the spectrum of VHA healthcare. Weave palliative care into your medical center strategic goals and plans.

What is important to your Team and your facility? Veteran and Family satisfaction Nurse satisfaction Standardizing palliative care processes Mortality and length of stay Re$ource utilization Cultural Transformation Other needs RN uses BFS PROMISE questions as a guide to educate families about expectations for excellent care

Nursing documentation… Veteran and family will be educated on the following topics: 1. Norms/routines in hospice 2. Expected effects of meds commonly used in hospice (opioids for pain and dyspnea), ativan (anxiety/insomnia), haldol (n/v/psychosis), atropine (death rattle). 3. Funeral, memorial, survivor benefits 4. Bereavement Support 5. Signs and symptoms of approaching death 6. The Final Journey 7. The Fallen Hero Star 8. Need to update NOK/HCS contact information . 9. RN to provide hospice admission packet, BFS PROMISE brochure, and f/u with Veteran and family as needs change. Not every MEDICAL CENTER has a hospice unit but for those who do….here is a sample hospice patient/family education note.

More to consider… Education [TMS] EPEC and ELNEC for Veterans Palliative Care Nursing Assistant Training VACO Supported Continuing Education End of Life Initiative (ELI) audioconferences Annual HFA Bereavement Teleconference NHPCO “We Honor Veterans” SHARED GOVERNANCE

More… Quality Improvement QUIRC Bereaved Family PROMISE Survey Patient Centered Care Committee Nursing Shared Governance Quality Council Unit based quality initiatives Community based quality initiatives (HVP) Qi EXAMPLE: For Veterans who receive home hospice care: what is the hospice agency AICD deactivation policy? SAME LEVEL OF EXCELLENT CARE FOR OUR VETERANS: “WE HONOR VETERANS’

More… Certification Hospice and Palliative Care Nursing Certification APRN-RN-LPN-NA Evidence-Based Practice Integrate Palliative Care as part of your Magnet Journey toward nursing excellence!

“Strive for 65” Interventions Palliative Care Admission Package Foster Good Impressions Using Key Words at Key Times Comfort Care Order Set Decedent Affairs as member of PCCT Patient Centered Care: Defining Excellence using PROMISE WPB VA has been participating in many of these quality interventions

“Strive for 65” Best Practices BFS Question: Implementation Package Tool: How often were the doctors and other staff who took care of (Veteran) kind, caring, and respectful? 4. Core Values and Palliative Care Principles 18. Palliative Care Nursing Assistant Project: “Using Key Words at Key Times” 8. Foster Good First Impressions at the VA 16. Family and Veteran Care Amenities Cart 9. Palliative Care Admission Package How much of the time were the doctors and other staff who care of (Veteran) willing to take time to listen? 14. Life Legacy Video 12.Comfort and Communication in the ICU 15. Family Meeting Template How often did the doctors and other staff provide the medication and medical treatment that you and (he/she) wanted? 13. Comfort Care Order Set 10. Defining Excellent Care for Each Veteran & Family 7. Pain Management Education How often do you think his/her personal care needs such as bathing, dressing, and eating meals – were taken care of? 18. Palliative Care NA Project: “Using Key Words at Key Times” How much of the time did the doctors and other staff who took care of (Veteran) provide you and (Veteran) the kind of emotional support that you and (he/she) would have liked prior to his/her death? 22. Key Role of Chaplains in Hospice and Grief Education 20. Details Clerk as Part of Hospice & Palliative Care Team 26. Decedent Affairs Coordination 21. Door Notification of Actively Dying Veterans 28. Hospice Choir What about after [MR./MS. LAST NAME]’s death—How much of the time did the doctors and other staff who took care of [HIM/HER] provide you the kind of emotional support you would have wanted?   23. After Death Care of the Body 24. Morgue Viewing 25. Bereavement Follow Up 27. SOLACE and Healing Group 28. Annual Memorial Service CELC IMPLEMENTATION CENTER HAS IDENTIFIED BEST PRACTICES WHICH CORRELATE WITH EXCELLENT END OF LIFE CARE.

What about after [MR. /MS What about after [MR./MS. LAST NAME]’s death—How much of the time did the doctors and other staff who took care of [HIM/HER] provide you the kind of emotional support you would have wanted?   23. After Death Care of the Body 24. Morgue Viewing 25. Bereavement Follow Up 27. SOLACE and Healing Group 28. Annual Memorial Service During [MR./MS. LAST NAME]’s last month of life, how often did the doctors and other staff who took care of [HIM/HER] keep you or other family members informed about [HIS/HER] condition and treatment? 15. Family Meeting Template 18. Palliative Care NA Project: “Using Key Words at Key Times” 10. Defining Excellent Care for Each Veteran & Family 12.Comfort and Communication in the ICU Did anyone alert you or your family when [MR./MS. LAST NAME] was about to die? 21. Door Notification of Actively Dying Veterans In [MR./MS. LAST NAME]’s last month of life, how much of the time did the doctors and other staff who took care of [HIM/HER] provide you and [MR./MS. LAST NAME] the kind of spiritual support that you and [HE/SHE] would have liked? 22. Key Role of Chaplains in Hospice and Grief Education Would it have been helpful if the VA had provided more information about benefits for surviving spouses and dependents? 26. Decedent Affairs Coordination 9. Palliative Care Admission Package Would it have been helpful if the VA had provided more information about burial and memorial benefits?

Would it have been helpful if the VA had provided more help with [MR Would it have been helpful if the VA had provided more help with [MR./MS. LAST NAME]’s funeral arrangements? 26. Decedent Affairs Coordination 9. Palliative Care Admission Package Overall, how would you rate the care that [MR./MS. LAST NAME] received in the last month of [HIS/HER] life?   A. BFS Awareness/Familiarization B. Hospice Related C. Overall Program/Facility Function 6. BFS Pocket Card 11. Increase BFS Awareness Via Bereaved Family Survey Pamphlet 18. Palliative Care NA Project: “Using Key Words at Key Times” 5. Interface with Hospice 17. Hospice On-Call Arrangement 1. Organizational Goals 2. Professional Certification in Palliative Care 3. Palliative Care Committee 19. Palliative Care Champions 8. Foster Good First Impressions at the VA

PCCT models expand to meet Veteran need… Palliative Care CBOC Clinics via CVT PACT-CCHT-PCCT PACT-PALLIATIVE CARE CLINICS PALLIATIVE CARE SPECIALTY CLINICS: Pulmonary/Oncology/Cardiac/Renal/Neuro PCCT is specialist team ….. PACT to provide palliative care as generalists… What can PACT do to help patients get the care they want and deserve? Veteran preferences are put into medical orders: Completion of Advance Directives, Care Preferences, Code Status orders

1. Continue palliative care in the CLC. EMERGENCY RESUSCITATION STATUS: Do Not Resuscitate (DNR): no CPR, no BCLS/ACLS, other limitations of care: PALLIATIVE CARE 1. Continue palliative care in the CLC. 2. no artificial hydration/nutrition to prolong life (no ng, peg, iv fluids) 3. no lab work or diagnostic testing 4. if I become ill, do not move my room or hospitalize me, treat me in the CLC 5. oral antibiotics are ok, swallowing pills are not difficult for me 6. my comfort, dignity, and quality of life are my priorities DIAGNOSIS: Multiple Sclerosis, weight loss, renal failure, protein-calorie malnutrition, decubitus ulcers. PROGNOSIS: Poor. The patient is capable of understanding and making an informed judgment in this matter. Diagnosis, prognosis and treatment options have been discussed with: patient. Treatment preferences as expressed by the patient are to be implemented. The patient does have an advance directive and the advance directive has been reviewed by me. Patient preferences are written as medical orders to be implemented by the interdisciplinary team. COMFORT CARE ORDER SET

Hospice and Palliative Care Teams Yeeta Pandey, RN Hospice Nurse/Chaplain Leopard HPC Chaplain/Sandy DiScala Pharm D/Maura HPC Program Director Jannette Sharpe-Paul, Nurse Mgr. Hospice/ Marie Robinson-Mclaughlin Chief Nurse GEC. Mental Health, Blind Rehabilitation Michael Silverman, MD Chief GEC and Hospice Medical Director/ Lynnea Valpatic, LCSW Bereavement Coordinator inpatient hospice Social Worker/ Sandy Plata GEC AO/ Stephanie Dill, PCCT Social Worker and Home and Community Based hospice Program Coordinator/ Shoshanna Orellano, Music Therapist/ Bruce the dog.

the Freedom North Lakeside Garden provides Staff Resiliency: the Freedom North Lakeside Garden provides a healing place for residents and staff to be with nature What are we doing to sustain OURSELVES, OUR TEAMS, AND EACH OTHER. RESILIENCY TRAINING MINDFUL MOMENTS THE CARING CHANNEL MONTHLY LUNCH AND LEARN MONTHLY MASSAGE AND HEALING TOUCH DON’T PULL STAFF AFTER DEATH ! ENCOURAGE STAFF ATTENDANCE AT VETERANS’ FUNERALS/MEMORIAL SERVUCES

It is my honor to serve Veterans and NOVA. Thank you! Questions? Maura.miller@va.gov