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

Palliative Care and QOL Activities EngagementRebecca Kirch, Director, Quality of Life & SurvivorshipComp Cancer Coalitions Leader Summit – Atlanta 2012

“What is important

to you?”

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: 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 NotesBetter health. Better care. Lower cost.

What’s in a name? Language matters.

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 CareKey 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

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 careA. 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

www.acscan.org/palliativecare Join the QOL movement and take action!

Engage Health SystemsNew 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 SkillsTrained 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