It’s All About Living: Palliative Medicine

1. It’s All About Living: Palliative Medicine By Jacqueline A. Carrillo, MSN, FNP-BC DNP Candidate

2. Disclosure • No relevant financial disclosures to report

3. What is Palliative Care? • What it is NOT? • Not- limited to End-of-Life Care • Not- synonymous with Hospice • Not- elimination of curative care

4. Palliative Care • NOT • “giving up” • “accelerating death” • “in place of” curative or life-prolonging care • the same as hospice • IS • Evidence based medical treatment • Vigorous care of pain and symptoms through illness • Care that patients may want at the same time as treatment to cure or prolong life

5. Hospice Care Life Prolonging Care Life Prolonging New Hospice Care Care Bereavement Palliative Care Dx Death Conceptual Shift Old Bereavement

6. Palliative Care Model Hope for cure, life extension, a miracle… Individualized blending of care directed at underlying illness and physical, emotional, social, and spiritual needs of child and family with continuous reevaluation and adjustment End-of-life care Bereavement care Hope for comfort, meaning…

7. TYPES OF SERVICES • CONSULTATIONS ONLY • CONSULTATIONS AND INPATIENT SERVICES ONLY • OUTPATIENT /CLINIC ONLY • HOME SERVICES ONLY • COMBINATIONS OF THE ABOVE

8. Goals of Palliative Care • Enhance Quality of Life - Connection of multiple services • Decrease Suffering of Patient and Family- Bereavement • Promote Life Care Plans - Understanding Choices

9. Types of Palliative Care Patients • Chronic, complex conditions (CCC) • Potentially Life-threatening or life-limiting conditions • Pain • Symptom Management

10. Where does death occur • Less than ___ die at home • ____ received invasive treatment with 3 days of death • Less than ____ have discussed Advanced Directives with anyone

11. Death Location 1989 - 2007

12. Advanced Practice Nurse and Palliative Care Where Do We fit In?

13. Areas of Domain for the APRN • Clinical Judgment • Scientific Knowledge • Professionalism • Education and Communication • Evidence-Based Practice, Quality Improvement and Research • Systems Based Practice

14. Clinical Judgment • Assessments – HPI, Pain and Symptoms, ROS, Spiritual History, Social History, dysphagia, depression, grief, functional, dementia, other specialty assessments • Physical Examination – including intermittent changes • Advanced Care Planning – Health Care Surrogate, Advance Directive, Medical Orders for Life Sustaining Treatment • Information Sharing – Patient, family, cultural considerations and language sharing

15. Clinical Judgment (continued) • Diagnosis and Planning – risk/benefits/burden, considerations of outcome of potential “standard” orders • Intervention and Evaluation – education is part of treatment, resource identification, consider settings and realistic ability to implement intervention, goals of each

16. APRN Expertise and Symptom Management • Pain • Dyspnea • Fatigue • Nausea and Vomiting • Depression • Thrush • Edema

17. Symptom management Pain

18. Symptom Management- Pain • Nonpharmacologic • Relaxation: imagery, meditation, biofeedback, hypnosis • Distraction, control, choices • Body work: massage, healing touch, acupuncture • Expressive therapy: art, dance/ movement, play, music • Heat/ cold • Hypnotherapy • Biofeedback • Yoga • Reflexology • Spiritual care

19. Scientific Knowledge Use of Advanced Skills

20. Palliative Care Referral - Serious, Chronic Illness • Patient/Family request for comfort care • Request for hospice information/ appropriateness • Patient or Family psychological or spiritual distress • Declining ADL’s • Weight Loss • Multiple Hospitalizations • Difficult Symptom Control • Uncertainty of Prognosis/Goals of Care

21. Palliative Care Referral- Serious Chronic Illness • Mechanical ventilation in patient with • Metastatic cancer and declining function • Moderate to severe dementia • One or more chronic disease with poor functional status at baseline • Family Distress impairing surrogate decision making • DNR Conflicts • Use of Tube Feeding or TPN in cognitively impaired or seriously ill patients • Limited social support and a serious illness • Multi-organ failure • Long hospitalization or 2 or more ICU admissions within same hospitalization

22. Suffering Suffering is a specific state of distress that occurs when the intactness or integrity of the person is threatened or disrupted. It lasts until the threat is gone or integrity is restored. The meanings and the fear are personal and individual, so that even if two patients have the same symptoms, their suffering would be different. Eric Cassel, MD ERIC CASSELL

23. Professionalism

24. Professionalism as APRN’s and Palliative Care • Ethics- Principles • ANA Code of Ethics for Nurses “The aims of nursing actions are to protect, promote and optimize health; prevent illness and injury; alleviate suffering ANA, 2010 • The goal of hospice and palliative nursing “is to promote and improve the patient’s quality of life through relieve of suffering along the course of the illness” (HPNA, 2014) • Scope, Standards and Guidelines • Federal and State Definitions of APRN • Definition of Hospice and Palliative Nursing (NBCHPN, HPNA) • Advanced Certification in Hospice and Palliative Nursing

25. Professionalism and Survivorship • Self-Care and Support • Reduce/Mitigate stress points • Role clarity, budget, etc • Exposure to death, crisis, stress, care many find uncomfortable • Time Strategies for Self Care • Away from work, new projects, team activities, education, control over daily schedule and time management • Leadership and Self-Development • Moving the profession of nursing forward in changing clinical practice, education, quality and research, advocate, mentor, collaborator, administrator, case manager and consultant

26. Education and Communication Information is a never ending resource

27. Education • WHAT • Palliative Care goals, services, functions • Disease/illness in relation to the patient and potential progression • Treatment benefits/burdens from physical, psychological and SOCIAL perspectives • Advance Directives/Goals of Care • WHO • Patients • Families • Health Care Teams • Healthcare Communities • General Public

28. Communication THE MOST IMPORTANT SKILL Advanced Skills Compassionate Listening Mindful Presence Mindful Care Relationship Based Care • Conversations after Bad News – (cure, extent of life, quality and symptomology) • Maintaining trust, hope, boundaries and compassion • Cultural preferences • Conflict Resolution • Timely, genuine, honest • Attention to terminology

29. Narrative as Intervention • Making & Supporting relationships • Situational Identity • Social Roles • Dignity • Constructing meaning/ understanding losses • Identity “I am…” • Legacy • Spirituality

30. STIGMA Situational Identity Stigma If it is offered it should be done If there is love, they would want to stay with us as long as possible • Am I a good patient? • Am I doing what my family wants?

31. stigma Social Roles/ Dignity Stigma Treatment is the only way to prolong life You need to have decisions made for you now Don’t give up. We don’t want others to see Go “down fighting” • Am I seen as a fighter? Maintaining roles? • Is my life seen as complete? • How will I be remembered? • How will I die?

32. The Plan for Repeated Decisions Key Decisions for Long-Term Health Problems to Aid in Goal-Making: Long and Short Term Maximize Quantity of Life (More Time in One’s Life) Prioritize Which Goal ? Grave Health Problem Maximize Quality of Life (More Life in One’s Time) Palliative Care often times increases both Quality and Quantity Partially developed from Jackson, V. Massachusetts General Hospital

33. Evidence-Based Practice, Quality Improvement and Research Roles of the APRN

34. Evidence-Based Practice • Evidence Based Guidelines • National Consensus Project for Quality Palliative Care Clinical Practice Guidelines for Quality Care, Third Ed. • National Quality Forum A National Framework and Preferred Practices for Palliative and Hospice Care Quality (2006) • National Comprehensive Cancer Network Guidelines for Palliative Care. (2013) • Evidence-Based Practice • Cochrane Library • Agency for Health Research and Quality (AHRQ) • Institute for Healthcare Improvement (IHI) • National Consensus Project for Quality Palliative Care (2013) Clinical Practice Guidelines for Quality Palliative Care, Third Ed • NIH, NINR

35. Quality Improvement Seek Certification The Joint Commission Advanced Certification for Palliative Care (http://www.jointcommission.org/certification/palliative_care.aspx ) Be an Advocate in Policy Making Environments (HPNA Ambassadors) • Quality Improvement • Leadership • Implementing/utilizing evidence-based tools • Performance Measurements (Performance Measurement Coordination Strategy for Hospice and Palliative Care.http://www.qualityforum.org/Publication/2012/06/Performance_Measurement_Coordination_Strategy_for_Hospice_and_Palliative_Care.aspx

36. Research • Hospice and Palliative Nurses Association. 2012 Research Agenda 2012-2015. (http://www.hpna.org/DisplayPage.aspx?Title=Research) • Hospice and Palliative Nurses Association. 2012a Role of Hospice and Palliative Nurses in Research. Pittsburg, PA: HPNA (http://www.hpna.org/DisplayPage.aspx?Title=Position) • Responsibilities • Promote, participate and develop, disseminate • Research Areas • Nursing Discipline Specific • Palliative Specialty • Activities • Critical analysis, critique, interpretation, review • Implementation, incorporation

37. Systems Based Practice It’s All About Living

38. Systems Based Practice • Continuum of Care • Across all settings • Inter-related specialties • Strategies to promote quality • Incorporate influences of culture, spirituality and finances • Resource Access and Utilization • Stewardship of resources • Population Considerations • 24/7 Access?

39. Care Team Models • Collaboration • Mandated by CMS • No one model • Can be led by APRN’s and/or MD’s. • Possible team members • Social Workers, Chaplains, PT/OT/ST, RN’s, NA’s, NP’s, MD’s, CNS’s,

40. BENEFITS TO PATIENTS • Offering a total approach to caring for patients being treated for serious illnesses and their families. • Increase relief of illness induced suffering (pain [30%], dyspnea [80%], anxiety [35%], fatigue [60%], pain [75%], N/V [60%], constipation [75%], diarrhea [90%]) • More prepared for decision-making/options [75%] Wolfe et al JCO 2008

43. PALLIATIVE CARE QUALITY OF LIFE FOR ENTIRE FAMILY