Advancing a Quality of Life Agenda: Innovation, Ingenuity & Advocacy

1. Advancing a Quality of Life Agenda: Innovation, Ingenuity & Advocacy Palliative Care and QOL Activities Engagement Rebecca Kirch, Director, Quality of Life & Survivorship Cancer Center Leadership Retreat – Atlanta 2012

2. Palliative care is a medical innovation targeting a perfect storm • Unprecedented growth of an aging population • Failure to recognize and treat pain and other distressing symptoms • Widespread use of costly medical technologies that fail to restore health and functional independence • Exponential cost increases in care • Dissatisfaction and confusion about medical care and the health system

3. Quality Cancer Care Essential ElementsPerson centered & family focused Quality of Life Save Lives and Stop Suffering

4. Delivering health care consumers want… • People are concerned about the level of care patients with serious illness receive. • Biggest concerns relate to information sharing, personal choice and control, communication and quality time. • But they don’t know how to ask for the care they want and need. Data from CAPC/ACS Public Opinion Strategies national survey of 800 adults age 18+ conducted June 2011. www.capc.org

5. Palliative Care Delivers Care People Want • Optimizes QOL and survival by anticipating, preventing, and treating suffering. • Essential component of cancer care beginning at diagnosis and continuing throughout treatment, surveillance, survivorship, and bereavement.

6. Commission on Cancer’s 2012 Patient-Centered Care Program Standard Clinical Services – Standard 2.4 Palliative Care Services Palliative care services are available to patients either on-site or by referral. • Interdisciplinary team provides palliative care services • Cancer committee defines services and reviews definition annually • Member of palliative care team is now a required member of cancer committee when on-site services are provided • Opportunity: Interact with palliative care teams to help enhance their relationships and reach within cancer centers and in community. • Opportunity: Range of useful technical assistance tools and training available right now for enhancing core palliative care competencies. Goal is to achieve quality (not just compliance…)

7. What did cancer center leaders tell us about the landscape in 2009? • 90% agreed stronger integration of palliative care services into oncology practice will benefit patients at their institution (92% non-NCI) • 84% agreed more research funding should be directed toward palliative care services (81% non-NCI) • 56% agreed their institution will be increasing palliative care physicians over 5 years (25% non-NCI) • 44% agreed their institution will be increasing funding for palliative care over 5 years (23% non-NCI) • Biggest barriers: limited institutional budget, poor reimbursement, and limited trained palliative care staff (Hui et al, JAMA 2010 – Availability & Integration of Palliative Care at US Cancer Centers)

8. What we learned from you about now • Same top palliative care access barriers still ring true – limited institutional budget, poor reimbursement, and lack of adequately trained workforce • Nearly all here are Joint Commission certified hospitals and Commission on Cancer accredited cancer institutions, with 81% now having operational palliative care programs and others planning to add service within 3 years • You’ve seen increased effectiveness of your institution’s pain services, but plenty of room for improvement exists (only 13% rated pain management “excellent” and 53% “good” today) • Increased effectiveness of palliative care service - 68% good to excellent rating today vs. only 27% five years ago • 53% are developing palliative care screening criteria for oncology patients; 27% now have criteria in place Pre-retreat survey data – August 2012

9. Palliative Care’s Decisive Moment • Robust and growing evidence base to • guide clinical practice and make our case • Already one of fastest growing health care trends • Newstandards & measures: • Commission on Cancer accreditation standard • The Joint Commission certification program • National Quality Forum endorsed measures • Oncology is getting on board (and others will too) • New ASCO provisional clinical opinion • Consumer research shows strong public interest • New QOL legislative suite and advocacy platform

10. “What is important to you?”

11. QOL concerns are not raised or discussed in cancer clinical settings. Q: After diagnosis and before starting treatment, did anyone on care team ask what is important to you in terms of your QOL? 2010 ACS CAN National Poll on Facing Cancer in the Health Care System (www.acscan.org)

12. Research Publications: Oncology and Palliative Care (2003-2005) QOL is not a priority area for NIH research funding either. Gelfman LP, Morrison RS. J Palliat Med, 2008 QOL-focused research = .098% of total NIH budget in 2009

13. An(other) Inconvenient Truth: Our Policy Environment Health reform = buzzword bingo Skyrocketing health costs Polarized policymakers Death panel skittishness Affordable Care Act issue fatigue Pain stigma and drug control activity

14. System shortchanges the seriously ill Toxicities of cancer treatment are a very real price paid for progress (Niraula, et al. JCO August 2012) Moreover, we know people living with serious illness often experience: • Inadequately treated symptoms • Fragmented care • Poor communication with their doctors • Enormous strains on family caregivers Palliative Care = an essential aspect of quality cancer care

15. Kids (and families) are particularly vulnerable Integrated pediatric palliative care is essential for children and families • 50,000 children die and 500,000 cope with serious illness in US each year • Substantial suffering from symptoms – Pain, fatigue, breathlessness • Cure is primary goal -- toxicities, quality of life, growth & development often take back seat in care planning & delivery SAVE LIVES AND STOP SUFFERING.

16. Collaborative Promotion of Palliative Care & QOL All of us advocating. At every level. ACS QOL Priority Platform Provide research support to churn out more clinical evidence & blockbuster studies that drive quality care Increase consumer, health professional & policymaker awareness andeducation about palliative care Advance QOL legislative agenda addressing palliative care research, workforce and access barriers Pursue meaningful hospital, cancer center & health systems integration of palliative care services and bring it to communities. Enhance clinical communication skills to empower professionals, patients, survivors and caregivers and improve care quality

17. A. QOL Research Support Extramural Grant Program Partnership: • Since 2007, ACS has awarded 51 grants totaling nearly $18 million dedicated funding to palliative care & symptom management research • The National Palliative Care Research Center offers a parallel palliative care research grant program in partnership with us • Annual Kathleen Foley research retreat and associated mentoring is building a strong community of researchers and project collaborations among them • ACS Pathfinder in Palliative Care Award recognizes exceptional professional innovation & ingenuity in advancing the field • For research program details & current projects info: www.npcrc.org

18. B. Increase Education & Awareness “Give us the words to use to get the care we need”

19. Chief Barrier: Palliative care has an identity problem. Q: How knowledgeable, if at all, are you about palliative care? • Palliative care is a relative unknown among laypeople (92% really don’t know what it is) • Most health professionals equate palliative care with EOL and hospice – curative vs. palliative perspective Key Finding: People can understand and want palliative care if we use their words. Data from CAPC/ACS Public Opinion Strategies national survey of 800 adults age 18+ conducted June 2011. www.capc.org

20. What’s in a name? Language matters. Palliative care… • Focuses on relieving symptoms, pain and stress of serious illness. • Improves quality of life for both patient and family. • Provided by a team who works with a patient’s other doctors to provide an extra layer of support. • Appropriate at any age and any stage and can be provided along with curative treatment. Definition developed through consumer research by Public Opinion Strategies in 2011.

21. People Want Palliative Care Key Finding: People can understand and want palliative care if we use their words. • 95%say education is important for patients & their families about palliative care options available to them as part of treatment. • 92%report they would be likely to consider palliative care for themselves or their families if they had serious illness • 92%also said they believe patients should have access to palliative care at hospitals nationwide Data from CAPC/ACS Public Opinion Strategies national survey of 800 adults age 18+ conducted June 2011. www.capc.org

22. Mission Critical: Give them the words Find their QOL formula • Promote communication about personal choice and how patients want to be living • Make “what’s important to you” a priority (and document it) for treatment planning and follow up • Ask about QOL routinely — “How are your spirits?” and “Are you able to do the things you need to do?” • Talk about palliative care as an “extra layer of support that is helpful at every point in care.” • Consider a referral for early palliative care consultation Encourage colleagues to move in the QOL groove

23. Palliative Care Hits the High NotesBetter health. Better care. Lower cost. Key Advocacy Messages: Palliative care sees the person beyond the cancer treatment. Palliative care is all about treating the patient as well as the disease. It’s a big shift in focus for health care delivery—and it works.

24. C. Advance QOL Legislation • Pressing for person-centered, family-focused care • Federal suite is our starter course • Patient-Centered Quality of Life Act (HR 6157) • Palliative Care & Hospice Education and Training Act (HR6155/S3407) • QOL Model State Legislation Coming Soon • Balancing State Pain Policies Continues • For campaign details: www.acscan.org/palliativecare

25. D. Integrate Palliative Care in PracticeNew QOL Standards, New Opportunities • Advanced Palliative Care Certification Program for hospitals • Palliative Care accreditation standard for cancer programs • Endorsed several new palliative care measures • Provisional Clinical Opinion on concurrent palliative care

26. Palliative Care Tools & Tech Assistance • Variety of Professional Resources www.capc.org • How to Guide for building hospital-based palliative care program • Top tools toolkit • Frequent audio conferences • Clinical site visit directory • National Palliative Care Registry • ACS-sponsored annual CAPC National Seminar (Miami 2012) • Customized Palliative Care Leadership Centers & year long mentoring Consumer website

27. E. Communication Skills Reboot

28. “What’s Important to You” Refresher “The way you communicate is part of your work as a healer. You’re not born with communication skills – you learn them.” -- Anthony Back, MD (medical oncologist, Seattle) • Helping health professionals know and use the right words… • Effective clinical communication… • Improves patient understanding and personal choice • Promotes shared decision-making and health professional resilience • Engenders patient/family satisfaction & trust

29. Targeting Action & Measuring Progress Prevalence of Board Certified Professionals Delaware 5 physicians, 2 APNs, 55 RNs DC 5 physicians, 1 APN, 6 RNs Georgia 53 physicians, 10 APNs, 297 RNs Maryland 51 physicians, 14 APNs, 232 RNs N. Carolina 89 physicians, 20 APNs, 477 RNs S. Carolina 32 physicians, 5 APNs, 181 RNs Virginia 76 physicians, 23 APNs, 281 RNs West Virginia 15 physicians, 1 APN, 110 RNs www.capc.org/reportcard Our nation received an overall grade of B on palliative care access (up from C in 2008)

30. We really are here (and there) to help! • Providing extramural research funding and publishing clinical research findings in ACS journals to boost evidence base and quality care delivery • Educating patients & families, professionals, and policymakers about palliative care and QOL. • ACS mission staff partners are available on the ground – • in your community – to help you build bridges to the people, tools, and resources you need toachieve the new quality standards and support your efforts to deliver high quality care.

31. Creating a QOL Movement… for more and better birthdays! Although the world is full of suffering, it is also full of the overcoming of it. -- Helen Keller, Optimism

32. Panel Discussion

33. Pre-retreat survey sum up • 88% of cancer centers represented here offer palliative care inpatient consult service; 68% offering outpatient palliative care services • Most palliative care teams are physician-led (76%); some APN led (16%) • Requirement for palliative Care board certification of physicians and nurses is variable across the institutions (56% require for physicians; 28% require for nurses) • Clear numbers available for new oncology patients and total cancer patient visits annually, but data are not consistently captured on palliative care referral numbers or LOS to consult • 56% have pain, symptom & communication quality improvement activities in place; 28% in development, with 40% participating in ASCO’s Quality Oncology Practice Initiative (QOPI) • Nearly half (48%) support and provide palliative care educational resources for professional staff; 16% have resources in development • Few appear to offer palliative care fellowship or research programs