Transcript Advancing a Quality of Life Agenda

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
Quality Cancer Care Essential Elements
Person centered & family focused
Prevention &
Early Detection
Quality
of
Quality
Life
Treatment
& Care
Personal
Choice &
Control
Save Lives and Stop Suffering
“What
is important
to you?”
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)
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
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.
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.
Our patients and families don’t know what
they don’t know.
“Give us
the words to use
to get the care we
need”
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)
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
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.
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
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
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
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.
Advance QOL Legislation
Pressing for person-centered, family-focused 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 Continues
For campaign details: www.acscan.org/palliativecare
Integrate 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
Communication Skills Reboot
Trained Professionals, Empowered Patients.
What can we do? Help
health professionals know
and use the right words…
“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
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
Crosswalk CCC workgroup expertise to
promote person-centered, familyfocused care.
Treatment
Palliative
Care
Survivorship
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.
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