Advancing a Quality of Life Agenda: Innovation, Ingenuity & Advocacy Palliative Care and QOL Activities Engagement Rebecca Kirch, Director, Quality of Life & Survivorship Comp Cancer Coalitions Leader Summit – Atlanta 2012

“ What is important to you?”

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

Palliative care sees the person beyond the cancer treatment. Optimizes quality of life and survival by anticipating, preventing, and treating suffering. Essential element of quality care from diagnosis and continuing throughout treatment, surveillance, survivorship, and, when applicable, bereavement. Palliative Care Hits the High Notes Better health. Better care. Lower cost.

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.

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 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

“Give us the words to use to get the care we need”

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

Mission Critical: Give them the words What can I do? Help everyone get in the QOL groove… This QOL platform promotes personal choice about how patients want to be living – “the QOL formula” Talk about palliative care as an “extra layer of support that is helpful at every point in care.” Seize all opportunities to inform & empower others so we build palliative care awareness and understanding – make “what’s important to you” a priority.

Advance QOL Legislation Pressing for QOL and person centered care A.Federal suite is our starter course 1. Patient-Centered Quality of Life Act (HR 6157) 2. Palliative Care & Hospice Education and Training Act (HR6155/S3407) B.QOL Model State Legislation Coming Soon C.Balancing State Pain Policies What Can I do?  Become familiar with the advocacy campaign and messaging at  Join the QOL movement and take action!

Engage Health Systems New QOL Standards, New Opportunities Advanced Palliative Care Certification Program for hospitals (2011) Palliative Care accreditation standard for cancer programs (2011) Endorsed several new palliative care measures (2011) Provisional Clinical Opinion on concurrent palliative care (2012)

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

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

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