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 Comp Cancer Coalition Leaders Summit – Atlanta 2012

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

3. “What is important to you?”

4. 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)

5. 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

6. 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.

7. 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.

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

9. 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 • Most health professionals equate palliative care with EOL and hospice – curative vs. palliative perspective • Palliative care is a relative unknown among laypeople (92% really don’t know what it is)

10. Addressing Public (Un)awareness Q: How knowledgeable, if at all, are you about palliative care? 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

11. 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.

12. 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

13. 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

14. 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

15. 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.

16. 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

17. 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

18. Communication Skills RebootTrained Professionals, Empowered Patients. What can we do? Help health professionals know and use the right words…

19. “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

20. State Comprehensive Cancer Coalitions can play key role promoting QOL • What can I do? • Feature this QOL topic and engage your CCC colleagues to educate and energize membership and motivate action… • Promote integrated palliative care and improve understanding about its definition and use • Use this QOL platform to expand coalition’s organizational partner reach and cultivate new ties with health professionals and others

21. Crosswalk CCC workgroup expertise to promote person-centered, family-focused care. CCC plans and activities should emphasize importance of integrating palliative care from diagnosis onward for all adults and children across the cancer care continuum to improve quality of life, survival, and patient/family experience.

22. 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