Palliative Care: Living with Chronic Illness

1. Palliative Care: Livingwith Chronic Illness Planning Ahead: Crucial Conversations Caroline Boaz MSN, RN

3. What Gives Your Life Meaning?

5. For those living with chronic or serious illness: • Be clear about what is important to YOU • Know about Palliative Care • Take charge of your own care … and self care! • Communicate your values, priorities and choices • Know ”The 10 Things”

7. Some Facts • U.S. Health Care system • 37th in quality worldwide; #1 in investment • Premiums increased 131% in last 10 years • Cost = 18% of GDP and 19% of CA state spending • Costliest 5% of patients =50% of spending

8. Some more facts • 1 out of every 8 Americans is over 65 • 90% of those over 65 have at least 1 serious or chronic illness; 23% have 5 or more conditions • In the last year of life: • On average - visit 13 physicians • fill 50+ prescriptions

11. A health care model focused on cure and wellness Birth Death

12. But…What if cure is not possible? Then what?

13. How can you???

14. Palliative Care A Patient and Family-centered health care model for those with serious or chronic illness focused on cure and quality of life

15. Palliative care improves quality of life for individuals and families facing serious illness—whatever the diagnosis or prognosis • Prevents and relieves suffering by: • addressing pain and other physical symptoms • as well as emotional, psycho-social and spiritual problems associated with serious and chronic conditions

16. Interdisciplinary team approach • Typically includes a physician, nurse, social worker, pharmacist, chaplain and others as needed • Focuses on individuals living as actively as possible throughout the course of an illness • Helps loved ones cope during the individual’s illness and their own bereavement • Accompanies curative or disease-modifying treatment

18. PALLIATIVE CARE HOSPICE Palliative care philosophy Appropriate when <6 months to live Curative treatment ends Reimbursed by Medicare and insurance for all hospice care Palliative care philosophy Appropriate from diagnosis onwards Enhances curative treatment Reimbursement for MD/NP and limited LCSW

19. THE IMPACT OF PALLIATIVE CARE • Improves patient care • Increases longevity • Improves patient and family satisfaction • Improves health care resource utilization • Reduces health care costs

20. How does it do this? • Focus on symptom management, communication and informed decision-making • Focus on patient’s definition of quality of life • Focus on patient’s goals of care • Focus on the patient and family as the unit of care

21. And… • Improves health care resource utilization • Reduces health care costs

22. Do we have Palliative Care here? • Available in 60% of California’s hospitals • Limited availability in outpatient settings • Only 8% of hospitals offer it • Home-based Palliative Care: rare • Palliative Care Certified Physicians • 914 in California

23. Take charge of your care! Begin by having a health care team that you trust A team that respects and cares about YOU

24. Have “The Conversation” with your loved ones • Complete an Advance Directive for Health Care • Communicate your choices to your doctors • If you have a serious illness, complete a POLST

25. Make friends in your doctor’s office • Email questions or concerns ahead of your appointment

26. Ask questions • Be an advocate for others • Share what is working and what is not

27. Use the internet as a resource… • ALWAYS VERIFY!

28. Taking charge of your care means that… • If you have a serious illness or someone you care for is seriously ill • Be an advocate • Have an advocate • Remember…it is OK to disagree and have a different opinion It is about YOU!

29. If you have a serious or chronic illness • Do not go to medical appointments alone • Bring someone along who is prepared to take notes

30. To thrive with chronic illness • Be confident that you have the right doctor • Define your circle of support • Protect your health • Create a new measuring stick • Have dreams and strive for them! Borchard, T. 2009

31. Answering your questions: • What is the Palliative Care? • What is the significance of having lead center at Cal State San Marcos? • How does it help us? • How do we stay engaged?

32. THE CSU INSTITUTE FOR PALLIATIVE CARE • Increasing access to and awareness of palliative care by: • Educating current professionals • Educating the future workforce • Building community awareness and advocacy • Creating a model here, replicating it at interested campuses across California and the U.S.

33. WHAT IS NEEDED? • Educate the workforce • For everyone • What is palliative care? • What resources are available? • Opening goals of care and decision-making conversations • For MDs, nurses, social workers, chaplains, others • Expert pain and symptom management • Advanced communication skills • Interdisciplinary team skills

34. Educate Community Members/Consumers • What is palliative care • How to access palliative care • Resources in the community • How to advocate for palliative care • For yourself • For those you love • For your community

35. Resources that may be helpful • The CSU Institute for Palliative Care www.csupalliativecare.org • Preparing for a Good End of Life TED Talk http://video.ted.com/talk/podcast/2013U/None/JudyJohnston_2013U.mp4

36. Coalition for Compassionate Care California http://coalitionccc.org/ • Palliative Care information http://www.getpalliativecare.org/ • Hospice information http://www.nhpco.org/resources/end-life-care--resources

37. Questions and Answers