“The National Agenda to Improve Care in Life Threatening Illness”

1. “The National Agenda to Improve Care in Life Threatening Illness”

2. National Consensus Project www.nationalconsensusproject.org The Development of Clinical Practice Guidelines for Quality Palliative Care

3. National Consensus Project Mission To create a set of voluntary clinical practice guidelines to guide the growth and expansion of palliative care in the United States

4. What is the National Consensus Project? Consortium of three key national palliative care organizations: • American Academy of Hospice and Palliative Medicine • Hospice and Palliative Nurses Association • National Hospice and Palliative Care Organization 

5. Definition of Palliative Care 1. Aims to relieve suffering and to support the best possible quality of life for patients with advanced chronic or life-threatening illnesses and their families.

6. Definition of Palliative Care 2. Both a general approach to patient care routinely integrated with disease-modifying therapies, as well as a growing practice specialty for highly trained specialist physicians, nurses, social workers, chaplains and others who work in teams.

7. Palliative Care Ensures: • Physical comfort through state-of-the art, comprehensive management of pain and symptoms • Practical needs are addressed and coordinated • Psychosocial and spiritual distress is managed • Patient and family values and decisions are respected and honored • Opportunities are available for growth and resolution

8. Palliative Care is Important “The nation is about to experience a great demographic shock. Between 2010 and 2030 the over 65 population will rise over 70 percent.” The Urban Institute, 1998

9. Palliative Care is Important • Americans: • Increasingly experience chronic advanced illness • Suffer needlessly • Need support in navigating the health system • Policy makers: • Need effective solutions

10. Palliative Care is Important • Health care settings: • challenged to deliver efficient and effective management of long-term advanced illness • Clinicians: • Need support and expertise for treating this growing population QUALITY CARE TO THOSE WHO MOST NEED IT, WHERE AND WHEN THEY NEED IT

11. Where We Are Now • Hospice has created “gold standard” of care • Hospices aresuccessfully expanding services to provide palliative care to patients in a variety of settings earlier in the course of illness • Leading hospitals and long-term care facilities have started palliative care programs

12. Where We Need To Go • Expand access for patients and families • Increase number of reliable, high quality programs • Assure quality

13. Need Improved Outcomes • Efficient, effective management of advanced chronic and life-threatening illness • Access • Quality, including pain and symptom control • Smooth transitions and case management across health care settings • Reduced variation among programs

14. National Consensus Project Structure Phase I (2002 – 2004) • Steering Committee – 20 members develop draft document • Advisory Committee – 100 nationally recognized leaders across a variety of health care settings, review and revise • Liaison Organizations – 50 organizations with major responsibility for health care of patients with life-threatening illnesses, endorse and disseminate the standards

15. National Consensus Project Structure Phase II (2005 – 2006) • Task Force – 10 members guide dissemination process • Advisory Committee – 34 national leaders serve as a link to professional organizations to disseminate the guidelines

16. Clinical Practice Guidelines Consensus of the leading palliative care organizations in the U.S., based on • Scientific evidence • Clinical experience • Expert opinion

17. Clinical Practice Guidelines • Facilitate development and improvement of clinical programs, particularly those serving a high proportion of people with acute and chronically progressive conditions

18. Clinical Practice Guidelines • In the absence of organized programs or specialists, guide clinicians to incorporate vital aspects of palliative care into their practice to improve care for their sickest patients, over the course of their illnesses

19. Clinical Practice Guidelines • Establish accepted definitions of the essential elements in specialist palliative care that promote quality, consistency and reliability of services • Foster continuity of palliative care by expanding access to case management across settings

20. NCP Goals • Build national consensus concerning the definition, philosophy and principles of palliative care through an open and inclusive process that includes the array of professionals, providers and consumers involved in, and affected by, palliative care

21. NCP Goals • Create voluntary clinical practice guidelines for palliative care that describe the highest quality services to patients and families • Broadly disseminate the clinical practice guidelines to enable existing and future programs to define better their program organization, resource requirements and performance measures

22. NCP Goals • Help clinicians provide key elements of palliative care in the absence of palliative care programs • Promote recognition, stable reimbursement structures and accreditation initiatives through projects such as the National Quality Forum (NQF)

23. Clinical Practice Guidelines 8 Domains • Structure and Process of Care • Physical • Psychological and Psychiatric • Social • Spiritual, Religious and Existential • Cultural • The Imminently Dying Patient • Ethics and Law

24. Domain 1: Structure and Process of Care • Care starts with comprehensive interdisciplinary assessment of patient and family • Addresses both identified and expressed needs of patient and family • Education and training are available • Team is committed to quality improvement • Emotional impact of work on team members is addressed • Team has relationship with hospices

25. Domain 2: Physical • Pain, other symptoms and treatment side effects are managed using best practices • Team documents and communicates treatment alternatives, permitting patient/family to make informed choices • Family is educated and supported to provide safe/appropriate comfort measures to patient

26. Domain 3: Psychological and Psychiatric • Psychological and psychiatric issues are assessed and managed based on best available evidence • Team employs pharmacologic, nonpharmacologic and complementary therapies as appropriate • Grief and bereavement program is available to patients and families

27. Domain 4: Social • Assessment (e.g. Family structure, relationships, medical decision making, finances, sexuality, caregiver availability, access to medications and equipment) • Individualized, comprehensive care plan alleviates caregiver burden and promotes well-being

28. Domain 5: Spiritual, Religious and Existential • Assesses and addresses spiritual concerns • Recognizes and respects religious beliefs – provides religious support • Makes connections with community and spiritual/religious groups or individuals as desired by patient/family

29. Domain 6: Cultural • Assesses and aims to meet the culture-specific needs of patients and families • Respects and accommodates range of language, dietary, habitual and ritual practices of patients and families • Team has access to/uses translation resources • Recruitment and hiring practices reflect cultural diversity of community

30. Domain 7: The Imminently Dying Patient • Team recognizesimminence of death and provides appropriate care to patient/family • As patients decline, team introduces hospice referral option • Team educates family on signs/symptoms of approaching death in a developmentally-, age- and culturally-appropriate manner

31. Domain 8: Ethics and Law • Patient’s goals, preferences and choices are respected and form basis for plan of care • Team is aware of and addresses complex ethical issues • Team is knowledgeable about relevant federal and state statutes and regulations

32. Why adopt the Clinical Practice Guidelines?

33. Hospitals • Develop quality programs • Efficiency: appropriate use of resources, decreased hospital and ICU stays, lower costs • Better clinical outcomes: relieves pain and distressing symptoms in all stages of treatment • Strengthened patient satisfaction: patients get comfort care without forgoing other treatment • Improved staff retention and morale: supports doctors/nurses in care of complex patients • Helps meet JCAHO quality and pain management standards

34. Nursing Homes • Improved patient outcomes in accord with regulations • Meets patient and family needs • Roadmap for caring for patients with chronic illness • Strengthened patient satisfaction: patients get comfort care without forgoing other treatment • Improved staff retention and morale: supports doctors/nurses in care of complex patients

35. Health Care Professionals • Promotes optimal, evidence-based care to your most complex, sick patients without significant workload burden • Better clinical outcomes: relieves pain and distressing symptoms in all stages of treatment • Strengthened patient satisfaction: provides the care patients want; improves patient/family health care system experience

36. Palliative Care Programs • Ensures quality care • Guides program development • Ensures highest standards are met • Next step in maturing field

37. Policy-makers • Strengthens a health system that serves our sickest patients • More appropriate use of financial resources – improved care while lowering costs • Ensures that all patients and their families, your constituents, receive a uniform and appropriate level of care

38. Patients and the Public • Expert pain and/or symptom relief; helps end needless suffering • Everybody has a right to the best quality care • Assistance in navigating the medical system and choosing health care providers • Guidelines are based on years of research into best care for seriously ill patients

39. National Consensus Project Outcomes The widespread adoption of these guidelines in the U.S. will encourage a level of consistency, comprehensiveness and quality that patients and families can come to expect whatever their diagnosis, wherever they live, regardless of the setting of care.

40. What more can you do? • Health care organizations: Use the guidelines to start a palliative care program for efficient, effective management of your sickest patients

41. What more can you do? • Clinicians: Ask for a palliative care program applying these guidelines in support of your care; or, in the absence of a program, use standards to provide core elements to care of sickest patients

42. What more can you do? • Palliative care advocates: Champion adoption and use of guidelines in your organization & field and share with colleagues

43. What more can you do? • Policy-makers: Create incentives for health care organizations and providers to adopt and practice clinical practice guidelines

44. What more can you do? • Patients and families: Choose health care organizations and providers who have adopted clinical practice guidelines, and ask for a palliative care consult when you are facing advanced chronic or life-threatening illness

45. National Consensus Project Voluntary Clinical Practice Guidelines for Quality Palliative Care For more information: www.nationalconsensusproject.org