1. Advancing a Quality of Life Agenda: Innovation, Ingenuity & Advocacy Delaware Cancer Education Alliance Workshop November 2012 Rebecca Kirch Director of Quality of Life & Survivorship Cancer Control Science

2. Quality Cancer Care Essential Elements Person centered & family focused Prevention & Early Detection Personal Choice & Control Quality Treatment & Care Quality of Life Save Lives and Prevent Suffering

3. QOL consensus blueprints already exist across care continuum Delivering on the promise of person-centered & family-focused care Quality cancer care Palliative care Psychosocial care Survivorship care Pain care Institute of Medicine Series 2000 to 2011

4. Delaware helping lead the way… What Can Be Done 1.Eliminate gaps in services for patients & survivors. 2.Implement a holistic survivorship and rehabilitation program. 3.Fund services for the underinsured or uninsured. 4.Help survivors in the workplace. 5.Make sure every cancer survivor has access to a wellness coach. 6.Address the information gaps about resources for Quality of Life issues. 7.Facilitate home-based care. 8.Train health care providers on palliative care, survivorship, rehabilitation and end-of-life care.

5. 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

6. Case Study February 2008: 46 year old patient (father of four) presents to ER with severe shortness of breath and is admitted to hospital Tests confirm lung cancer with spread to brain; discharged home to young adult daughters’ care after one week inpatient Classic NSCL radiation and chemo combo treatment protocol; Patient unable to drive but can walk short hospital hall to radiation with cane July: Cancer not responsive to 1 st or 2 nd line chemotherapy; “usual” side effects tolerated fairly well – hair and appetite loss, fatigue, etc. Significant and increasing pain, breathlessness and agitation trigger 2 ED crisis visits, both resulting in hospital admission Early August: Patient arrives at clinic appointment in wheelchair; scans show cancer has spread. Oncology team suggests trying 3 rd line chemotherapy… Kirch RA. Palliative Care and Quality of Life: Patient-Centered Care Case Study. ARCH INT MED. July 2, 2012.

7. “ What is important to you?”

8. Helping Make Good Plans Person Centered & Family Focused Amy’s Essential Quality Care The “Niagara Falls Trajectory” Good Health Quality Treatment Good QOL “I don’t want longer length of life if it is a bad time. I want a good time for as long as possible” Berman A, Health Affairs, Living Life In My Own Way—And Dying That Way As Well (April 2012 vol. 31 no. 4, 871-874).

9. Palliative Care Delivers Care People Want Optimizes QOL and survival by anticipating, preventing, and treating suffering. Oncology’s extra layer of support and expertise to help control pain, symptoms and distress. Communication emphasis to identify and support patient & family goals and QOL during and after treatment. Temel JS, et al. NEJM (2010) Temel JS, et al. Early palliative care for patients with metastatic non-small cell lung cancer. NEJM 363(8)733-742 (2010).

10. What is Palliative Care? Palliative care is specialized medical care focused on providing relief from the symptoms, pain and stresses of serious illness. It is appropriate at any age and at any stage, and can be provided together with curative treatment. The goal is to improve QOL for both patient and family.

11. Integrating Palliative Care in Mainstream Medicine Serious illness diagnosis should be the trigger – this is when survivorship care planning starts! Hospice Palliative care Curative / remissive therapy Diagnosis Death Save Lives and Prevent Suffering

12. Key ACS Palliative Care Partnerships Research: ACS and NPCRC together are funding dedicated palliative care and symptom management grants and building the next generation of clinical researchers and a collaborative community for their work. (www.npcrc.org) Programs: Technical assistance, training, and resources for palliative care teams at every stage, including tools to achieve new palliative care Commission on Cancer standard and The Joint Commission hospital certification program. (www.capc.org ) Advocacy: New QOL federal legislative proposals addressing palliative care research, workforce and access barriers. Menu of complementary state model legislation options and strategies coming next. (www.acscan.org/palliativecare)www.acscan.org/palliativecare

13. 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 Diane Meier, MD

14. The Cost Savings are Real Hospital palliative care teams create efficiencies that deliver significant savings.  Palliative care consultations in 8 diverse hospitals resulted in adjusted net savings of $1,696 in direct costs per admission and $279 in direct costs per day. (Morrison 2008)  Patients enrolled in Medicaid at 4 New York state hospitals having integrated palliative care team consultations incurred $6,900 less in hospital costs during a given admission. (Morrison 2011) Thomas Smith, MD R. Sean Morrison, MD National Palliative Care Research Center

15. 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  New standards & 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 Curative and palliative care must happen together.

16. “ What is important to you?”

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

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

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

20. System shortchanges the seriously ill Toxicities of cancer treatment are a very real price paid for progress. (Niraula, et al. JCO August 2012 and Oeffinger, et al. NEJM October 2006) Adults & kids living with serious illness like cancer 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

21. Kids and families are particularly vulnerable About 13,500 kids diagnosed in US annually, with approximately 270,000 survivors of childhood cancer living as young adults/adults now. Treatment toxicities trigger side effects and/or late effects that last lifetimes –significant physical, psychosocial and other suffering for kids & families No clear home, care continuity or strategic transition plan for long term survivorship follow up as they grow up and out Integrated pediatric palliative care is essential.

22. Collaborative Promotion of Palliative Care & QOL All of us advocating. At every level. ACS Integrated QOL Platform A.Increase awareness and education about palliative care B.Advance QOL legislative agenda addressing research, workforce and access barriers C.Promote QOL research and training grant support D.Pursue integration of palliative care services and quality standards in all care settings E.Enhance clinical communication skills to deliver patient-centered & family-focused care Research Programs & Services Advocacy

23. “Give us the words to use to get the care we need” Our patients and families don’t know what they don’t know.

24. Chief Barrier: Palliative care has an identity problem. “I don’t want to achieve immortality through my work. I’d rather achieve it by not dying.” Woody Allen Palliative care is NOT about death, dying and end of life. It is about quality of life and the quality of how people are living. And it is about personal choice – “what is important to you”.

25. A. Addressing Public (Un)awareness  Palliative care is a relative unknown among consumers (92% really don’t know what it is)  Most health professionals wrongly equate palliative care with EOL and hospice – curative vs. palliative perspective  People understand and want palliative care if we use their words to define & describe it. CAPC/ACS consumer research findings deliver golden opportunity to improve awareness. Help us share these findings broadly! Access the report at http://www.capc.org http://www.capc.org

26. 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.

27. 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

28. Mission Critical: Give them the words What can professionals do? Use the QOL formula. 1.Promote communication about personal choice and how patients want to be living 2.Make “what’s important to you” a priority (and document it) for treatment planning and follow up 3.Ask about QOL routinely — “How are your spirits?” and “Are you able to do the things you need to do?” 4.Talk about palliative care as an “extra layer of support that is helpful at every point in care.” 5.Consider a referral for early palliative care consultation Encourage everyone to move in the QOL groove

29. Palliative Care Hits the High Notes Better 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.

30. B. Advancing QOL Legislation Pressing for quality care A.Federal boxed set is our starter course 1.Patient-Centered Quality of Life Act (HR 6157)  Reps. Cleaver and Bachus 2.Palliative Care & Hospice Education and Training Act (HR6155/S3407)  Senator Wyden & Rep. Engel B.Balancing state pain policies continues and state QOL legislation coming soon For campaign details: acscan.org/palliativecare

31. QOL Campaign: Direct Action Organizing 1.Develop a clear ask: “Support palliative care legislation HR 6155 to bring quality of life and care together for millions facing cancer.” 2.Articulate campaign goals to achieve short and long term wins 3.Identify stakeholder allies for coalition support (and neutralize potential opponents) 4.Strategic pursuit of bipartisan congressional champions and supporters 5.Educate grassroots constituencies, develop tactics for their engagement to energize them, help them build relationships 6.Use the media to showcase your cause 7.Apply pressure!

32. National Attention & Activity www.acscan.org

33. C. Promote QOL Research & Training Grants Extramural Grant Program Partnership: Since 2007, ACS has awarded 51 grants totaling nearly $18 million dedicated funding to palliative care & symptom management research (cancer.org – “explore research” tab) – 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 clinical researchers and project collaborations among them ACS Pathfinder in Palliative Care Award annually recognizes an individual demonstrating exceptional professional innovation & ingenuity in advancing the field each year For research program details & current projects info: www.npcrc.org

34. 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, Availability & Integration of Palliative Care at US Cancer Centers, JAMA 2010)

35. D. Integrating Palliative Care in Practice New 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

36. 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…)

37. ASCO’s new guidance on integrating palliative care with oncology practice “…combined standard oncology care and palliative care should be considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden.”

38. Palliative Care Info & Tech Assistance CAPC Professional Resources for palliative care teams  capc.org has variety of materials & news alerts capc.org  Frequent topical & practical phone webinars  ACS-sponsored annual National Seminar  Palliative Care Leadership Centers intensive hands on training & year long mentoring  Building national palliative care program registry database Helpful resources for Delaware:  Key tools helpful to palliative care teams at all stages of development & implementation.  Sign up for e-updates at www.capc.org www.capc.org Consumer website getpalliativecare.org

39. E. Communication Skills Reboot

40. “What’s Important to You” Refresher 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 Tulsky, Arnold, et al, SCOPE study, Ann Intern Med 155 (9): 593-602 (2011); Back, et al, Teaching Communication Skills to Medical Oncology Fellows, JCO 21 (12) 2433-2436 (2003). “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)

41. Pain Policy and Palliative Care Access Snapshots for Tracking Progress 2011: US Earns B Grade (up from C in 2008) Recap 2008: 33 states had received at least a B Updates coming 2013 & 2014 Prevalence of Board Certified Professionals in Delaware (2008 snapshot) 5 physicians; 2 APNs; 55 RNs capc.org/reportcard Hospitals with Palliative Care

42.  Spread the word about the words to use  Engage with DCC, colleagues, and employers to crosswalk expertise, educate & energize stakeholders, and motivate action  Align state benchmarks with achieving Commission on Cancer and Joint Commission standards & boosting workforce capacity/competency  Reach out to palliative care teams in your institutions  Steer consumers and professionals to available palliative care resources  Be a QOL advocate and take action! What Can I Do? Make integrating palliative care with oncology a priority on Delaware’s action agenda TreatmentSurvivorship Palliative Care Goal: Improve quality of treatment and patient/family experience for all adults & children in Delaware across the cancer care continuum.

43. You are NOT alone. Sing a loud, proud chorus, and from the same QOL song sheet…

44. 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