1. The National Consensus Project for Quality Palliative Care Promoting Quality and Excellence: The 3 rd edition of Clinical Practice Guidelines for Quality Palliative Care Prepared By: Constance Dahlin, ANP-BC, ACHPN, FPCN, FAAN April 2013 Editor and Task Force Member ConnieD@HPNA.org

2. 1. Describe the composition and organizational structure of the National Consensus Project for Quality Palliative Care. 2. Review the history of the National Consensus Project. 3. Explain the mission and tenets of the Clinical Practice Guidelines. 4. Describe the revisions made in the third edition of the Clinical Practice Guidelines. 5. Discuss why programs should adopt the Clinical Practice Guidelines. Objectives 1. Describe the composition and organizational structure of the National Consensus Project for Quality Palliative Care. 2. Review the history of the National Consensus Project. 3. Explain the mission and tenets of the Clinical Practice Guidelines. 4. Describe the revisions made in the third edition of the Clinical Practice Guidelines. 5. Discuss why programs should adopt the Clinical Practice Guidelines. 2

4. 1.Create clinical guidelines that improve quality of palliative care in the United States. 2.Promote quality palliative care. 3.Foster consistent and high standards in palliative care. 4.Encourage continuity of care across settings. The Clinical Practice Guidelines serve as manual or blueprint to create new programs, guide developing programs, and set high expectations for excellence for existing programs.

5. Consortium of six key national palliative care organizations:  American Academy of Hospice and Palliative Medicine  Center to Advance Palliative Care  Hospice and Palliative Nurses Association  National Association of Social Workers  National Hospice and Palliative Care Organization  National Palliative Care Research Center

6. AAHPM Amy Abernethy, MD, FAAHPM C. Porter Storey, Jr. MD, FACP, FAAHPM CAPC Diane E. Meier, MD, FACP David E. Weissman, MD, FAAHPM HPNA Betty Ferrell, PhD, RN, FAAN, FPCN Constance Dahlin, ANP, ACHPN, FPCN, FAAN Sally Welsh, MSN, RN, NEA-BC NASW Chris Herman, MSW, LICSW Stacy F. Orloff, EdD, LCSW, ACHP, SW NHPCO Judi Lund Person, MPH Edward W. Martin, MD, MPH NPCRC Sean Morrison, MD, FAAHPM Joanne Wolfe, MD, MPH, FAAP, FAAHPM

7. History of The National Consensus Project for Quality Palliative Care

8.  2004 – Release of the first edition ◦ Endorsed by 40 organizations and associations in 2004  2005 – Disseminated to 90 other organizations and associations  2006 - Used as guiding document for NQF’s A National Framework and Preferred Practices for Palliative and Hospice Care Quality: A Consensus Report  2009 – Second edition ◦ Used for review of health care reform under the Obama Administration  2011- Used as underlying principles in The Joint Commission for Palliative Care Advanced Certification  2013 – Third edition ◦ Endorsed by 53 organizations and associations

9.  Palliative care is patient and family centered care.  There is comprehensive palliative care with continuity across health settings.  Early introduction of palliative care should begin at diagnosis of a serious or life threatening illness.  Palliative care is interdisciplinary and collaborative.  Palliative care team members have clinical and communication expertise.  The goal of palliative care is the relief of physical, psychological, emotional, and spiritual suffering of patients and families.  Palliative care should focus on quality care.  There should be equitable access to palliative care services.

10. Palliative Care means patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social and spiritual needs and to facilitate patient autonomy, access to information and choice. National Quality Forum 2006 Federal Register 2008

11.  Care is provided and services are coordinated by an interdisciplinary team.  Patients, families, palliative and non-palliative health care providers collaborate and communicate about care needs.  Services are available concurrently with or independent of curative or life-prolonging care.  Patient and family hopes for peace and dignity are supported throughout the course of illness, during the dying process, and after death.

12. Palliative care is operationalized through effective management of pain and other distressing symptoms, while incorporating psychosocial and spiritual care with consideration of patient/family needs, preferences, values, beliefs, and culture. Evaluation and treatment should be comprehensive and patient-centered with a focus on the central role of the family unit in decision making. NCP 2004

13. Palliative care affirms life by supporting the patient and family’s goals for the future, including their hopes for cure or life-prolongation, as well as their hopes for peace and dignity throughout the course of illness, the dying process, and death. NCP 2004

15.  Necessitated by maturation of the field: ◦ Increased numbers of hospice and palliative care programs since 2009 ◦ Increased palliative care representation across the health care system ◦ Developments in the palliative care evidence base over the last five years  Morrison RS, Dietrich J, Ladwig S, et al. Palliative care consultation teams cut hospital costs for Medicaid beneficiaries. Health Affairs. 2011;30(3):454- 463.  Taylor D. Effect of hospice on Medicare and informal care costs: The United States experience. Journal of Pain & Symptom Management. 2009;38:110-114.

16.  Essential to reflect seminal events since 2009 ◦ Health Care Reform (Patient Protection and Affordable Care Act of 2010) which has critical elements of palliative care ◦ Advanced Palliative Care Certification by The Joint Commission initiated in 2011 ◦ New Quality Measures designed in 2010, 2011, and 2012

17.  Indicate the significant research in the field ◦ Early intervention palliative care in the Bakitas Study of 2009 and the Temel Study of 2010 ◦ Work with special populations and non-cancer diagnoses

18.  A broader and more inclusive document, applicable to all health settings.

20.  1. Structure and Processes of Care  2. Physical Aspects of Care  3. Psychological and Psychiatric Aspects of Care  3. Social Aspects of Care  5. Spiritual, Religious, and Existential Aspects of Care  6. Cultural Aspects of Care  7. Care of the Patient at End of Life – New Domain Title  8. Ethical and Legal Aspects of Care

21.  Accentuates the current state of the field with emphasis on interdisciplinary team (IDT) engagement and collaboration with patients and families.  Emphasizes coordinated assessment and continuity of care across healthcare settings.  Describes specificity of interdisciplinary team composition, team member qualifications, necessary education, training, and support.  Incorporates the new mandates for quality under the Patient Protection and Affordable Care Act.

22.  Emphasizes the assessment and treatment of physical symptoms with appropriate, validated tools.  Acknowledges that management of symptoms is multidimensional with pharmacological, interventional, behavioral, and complementary interventions.  Recommends the utilization of explicit policies for the treatment of pain and symptom management, as well as safe prescribing of controlled medications.

23.  Significant revisions on the collaborative assessment process of psychological concerns and psychiatric diagnoses.  Defines essential elements include patient-family communication on assessment, diagnosis, and treatment options for common conditions in context of respect for goals of care of the patient and family.  Describes required elements of a bereavement program.

24.  Emphasizes interdisciplinary engagement and collaboration with patients and families to identify, support, and capitalize on patient and family strengths.  Defines essential elements of a palliative care social assessment.  Describes the role of the professional social worker with a bachelor’s or master’s degree in social work.

25.  Includes a definition of spirituality, stressing assessment, access, and staff collaboration in attending to spiritual concerns throughout the illness trajectory.  Offers requirements for staff training and education in provision of spiritual care.  Emphasizes the responsibility of the interdisciplinary team, inclusive of an appropriately trained chaplain, to explore, assess, and attend to spiritual issues of the patient and family.  Promotes spiritual and religious rituals and practices for comfort and relief.

26.  Defines culture and cultural competence for the interdisciplinary team, underscoring culture as a source of resilience and strength for the patient and family.  Accentuates cultural and linguistic competence including plain language, literacy, and linguistically appropriate service delivery.

27.  Highlights communication and documentation of signs and symptoms of the dying process in the circle of care: the patient, the family, and all other involved health providers.  Underscores the importance of meticulous assessment and management of pain and other symptoms.  Emphasizes the essential attention to family guidance as to what to expect in the dying process and the post death period.  Stresses bereavement support.  Underscores social, spiritual, and cultural aspects of care throughout the process.

28.  Separates into three sections: advance care planning, ethics, and the legal aspects of care.  Emphasizes the responsibility of the palliative care team to promote ongoing discussion about goals of care along with completion and documentation of advance care planning documents.  Affirms and acknowledges the frequency and complexity of ethical issues in palliative care. Offers team competencies in ethics and counsel from ethics committees.

29.  Under legal issues, acknowledgement of the complex legal and regulatory issues that arise in palliative care that require team members to understand their respective scope of practice within the provision of palliative care.  Emphasizes access to expert legal counsel, essential for navigating the intricate and sensitive legal and regulatory issues in palliative care.

30. Supporting Evidence for the Third Edition Clinical Practice Guidelines for Quality Palliative Care 30

31.  Centers for Medicare & Medicaid Services. Accountable Care Organizations. 2012; http://www.cms.gov/aco/01/  Patient Protection and Affordable Care Act (PPACA), Public Law 111-148, §2702, 124 Stat. 119, 318-319,Title III (B)(III) Section 3140, Consolidating amendments made by Title X of the Act and the Health Care and Education Reconciliation Act of 2010 Washington, DC 2010.  The Joint Commission. Palliative Care Certification Manual. Oakbrook Terrace, IL: The Joint Commission; 2012. 31

32.  National Institutes of Health. Research Portfolio Online Reporting Tools (RePORT). 2012; http://projectreporter.nih.gov/reporter.cfm  National Quality Forum. Palliative Care and End-of-Life Care-A Consensus Report. Washington, DC: NQF 2012. http://www.qualityforum.org/Publications/2012/04/Palliative_Care _and_End-of-Life_Care%2%80%94A_Consensus_Report.aspx  National Quality Forum. Measure Applications Partnership - Performance Measurement Coordination Strategies for Hospice and Palliative Care Final Report. Washington, DC: National Quality Forum; 2012. 32

33. How can the National Consensus Project Clinical Practice Guidelines be utilized?

34.  National Consensus Project for Quality Palliative Care Clinical Practice Guidelines are part of the application.  Programs must discuss how they meet the Clinical Practice Guidelines, and in particular the domain which is the most challenging.  This is reviewed in the application.

35.  National Consensus Project for Quality Palliative Care Clinical Practice Guidelines are part of the framework, education, and benchmarking when the PCLCs train palliative programs seeking guidance.

36.  Distributes the Clinical Practice Guidelines to participants and uses them to reference the curriculum.

37. Why Adopt the National Consensus Project Clinical Practice Guidelines?

38.  Palliative care plays a crucial role in healthcare value. It reduces the need for high intensity, high cost services, such as hospital and home care stays.  Palliative care has repeatedly been demonstrated to improve quality of care. Specifically, it improves quality of life for the person and their family in terms of symptom burden, family well being and practical supports, communication about what to expect in the future and treatment options concordant with person and family-determined goals for care.

39.  The Clinical Practice Guidelines serve as a manual or blueprint to create new and guide developing programs that can achieve important health system objectives.

40.  Endorsed by 53 professional associations and organizations.  Supported by 4 professional associations and organizations.  Endorsements represent the diverse health disciplines.

41.  Represents varied disciplines ◦ Chaplaincy ◦ Nursing ◦ Medicine ◦ Social Work  Reflects varied constituents ◦ Cancer community ◦ Education community ◦ Ethics community ◦ Insurers ◦ Research

42. Dissemination of the Third Edition Clinical Practice Guidelines for Quality Palliative Care 42

43. To reflect the maturation of the field demonstrated by the increased numbers of hospice and palliative care programs and increased representation across the health system. To highlight the significant research and developments in the evidence base such as in early intervention palliative care and work with special populations. 43

44. To inform key stake holders of the difference palliative care makes in quality of life, patient satisfaction, and perhaps longevity. To reflect the changes from health care reform in the Affordable Care Act, the development of Advanced Palliative Care Certification, and new quality measures within the National Quality Forum. 44

45. To guarantee access to safe, comprehensive, quality palliative care by specialists with appropriate education and training. To assure palliative care across the health continuum and health settings to meet patients’ unique needs. To ensure that health care systems adopt palliative care into the care of patients with serious and life limiting illnesses and with appreciation for the complex and interdisciplinary nature of specialty of palliative care. 45

46. Who Should Adopt the National Consensus Project Clinical Practice Guidelines?

47.  Acute Care Programs  Ambulatory Care Programs  Rehabilitation Facility Programs  Long Term Care Facility Programs  Community Programs  Home Care Programs  Hospice Programs  Health Care Systems planning Accountable Care Organizations and Patient Medical Homes

48.  Guides program development in all the domains.  Validates necessary program elements to administration.  Ensures quality clinical outcomes in terms management of physical, psychological and psychiatric pain and symptoms.  Facilitates achievement of The Joint Commission (JCO) quality and pain management standards and ANCC (American Nurses Credentialing Center) Magnet status. 48

49.  Ensures highest standards of care as they reflect the maturation of the field, changes in practice, and developments in the palliative care evidence base.  Reflects new perspectives on the role of palliative care in quality as mandated by health care reform.  Promotes newest evidence base in outcomes research.

50.  Fosters improved patient outcomes in compliance with state and federal regulations.  Facilitates partnerships for caring for patients with debilitating and life limiting illnesses.  Promotes improved patient and family satisfaction in pain and symptom control.  Cultivates staff support in delivering care for long term patients.  Encourages improved staff education. 50

51.  Promotes quality metrics to the hospice program which are now an essential aspect of reporting as mandated by the Patient Protection and Affordable Care Act.  Adds additional aspects of care beyond hospice standards of participation.  Promotes the field to move upstream. 51

52.  Facilitates quality care for patients with serious and life limiting illnesses.  Promotes patient and family satisfaction in pain and symptom control. 52

53. Domain 1 Ferrell, B., Connor, S., Cordes, A., Dahlin, C., Fine, P., Hutton, N., Leenay, M., Lentz, J., Lund Person, J., Meier, D., & Zuroski, K. ( 2007). The National Agenda for Quality Palliative Care: The National Consensus Project and the National Quality Forum. Journal of Pain and Palliative Care, 33(6):737-744. Domain 2 Blouin, G., Fowler, B., & Dahlin, C. (2008). The National Agenda for Quality Palliative Care: Promoting the National Consensus Project’s Domain on Physical Symptoms and the National Quality Forum’s Preferred Practices for Physical Aspects of Care. Journal of Pain and Palliative Care Pharmacotherapy, 23(3):1-7. Domain 3 Hultman, T., Reder, ER., & Dahlin, C. (2008). Improving Psychological and Psychiatric Aspects of Palliative Care: The National Consensus Project and the National Quality Forum Preferred Practices for Palliative and Hospice Care. Omega-Journal of Death and Dying, 57(4):323-339. 53

54. Domain 4 Altilio, T., Otis-Green, S. Dahlin, C. (2008). Applying the National Quality Forum Preferred Practices for Palliative and Hospice Care: A Social Work Perspective. Journal of Social Work in End-of-Life and Palliative Care, 4(1). Domain 5 Scott, K., Thiel, MM., & Dahlin, C. (2008). The National Agenda for Quality Palliative Care: The Essential Elements of Spirituality in End of Life Care. Chaplaincy Today, 24(2):15-21. Domain 6 Dahlin, C. (2007). Promoting Culture within Pain and Palliative Care: National Consensus Project Guidelines and National Quality Forum Preferred Practices. American Academy of Pain Management The Pain Practitioner, 17(2): 7-9. Domain 7 Lynch, M., & Dahlin, C. (2007). Care of the Imminently Dying. Journal of Hospice and Palliative Nursing, 9(6):316-322. 54

55. Domain 8 Colby, W., Dahlin, C., Lantos, J., Carney, J., Christopher, M. (2010). The National Consensus Project for Quality Palliative Care Clinical Practice Guidelines Domain 8: Ethical and Legal Aspects of Care. HealthCare Ethics Committee Forum, 22(2):117-31. Used As Basis for Practice Piper, B., Borneman, T., Sun, V., Koczywas, M., Uman, G., Ferrell, B., James R. (2008). Cancer-Related Fatigue: Role of Oncology Nurses in Translating National Comprehensive Cancer Network Assessment Guidelines into Practice. Clinical Journal of Oncology Nursing, 12(5): 37-47. Grant, M., Elk, R., Ferrell, B., Morrison, RS., von Gunten, CF. (2009). Current Status of Palliative Care, Education, and Research – Clinical Implementation, Education, and Research. CA: A Cancer Journal for Clinicians, 59(5):327-35. Puchalski, C., Ferrell, B., Virani, R., Otis-Green, S., Baird, P., Bull, J., Chochinov, H., Handzo, G., Nelson-Becker, H., Prince-Paul, M., Pugliese, K., Sulmasy, D. (2009). Journal of Palliative Medicine, 12(10): 885-904. 55

56. Used As Basis for Practice 56

57. For more information and Free download of the Clinical Practice Guidelines available at: www.nationalconsensusproject.org