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Improving End of Life Care: It Takes a Community. ANA-Maine Annual Conference Dana Center October 14, 2011 Kandyce Powell RN, MSN Executive Director Maine Hospice Council and Center for End-of-Life Care. Reflection. A good teacher teaches what s/he has been taught. - PowerPoint PPT Presentation
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Improving End of Life Care: It Takes a Community
ANA-Maine Annual ConferenceDana CenterOctober 14, 2011Kandyce Powell RN, MSNExecutive DirectorMaine Hospice Council and Center for End-of-Life Care
Reflection
A good teacher teaches what s/he has been taught.
A wise teacher shares what s/he has learned.
Dula Sentle
The Children
At Home
Otse, Botswana
One focus Working together Listening to the children Identifying needs Problem-solving A sense of community Vision and action Volunteer assistance Partnerships/collaboration
The Focus for Maine
We need to decide where we want to go.
Is it quality end of life care for all patients and families?
If so, can we get there from here?
What will it take? What is missing? Why is it taking so long?
Why has it taken so long? The nature of illness places patients and families at
high risk of symptoms and stress that disable them from taking action.
Most patients are not part of a cohesive community that is accustomed to political action.
Acknowledging death may be counterproductive to raising money needed for research into life-prolonging treatments.
Any efforts to generate activism will likely encounter cultural avoidance and denial of death and dying.
Casarett, et. al., “Advocacy and Activism: Missing Pieces in the Quest to Improve end-of-Life Care”, JPM, November 1, 2002
What Is Missing?
Universal access Quality standards across all
settings Accountability Critical mass (consumer
engagement)
What Will It Take?
Individual empowerment Increased advocacy and activism Awareness that there are inadequacies Innovative education initiatives Widely accessible and understandable quality
indicators Community engagement Accountability Paid family care-giving Appropriate research agenda Mentoring programs More collaboration among health care providers
We must begin working together
“…the free and open exchange of ideas is the vital pulse of scientific inquiry.”
Michael Polanyi
Philosopher of Science
Atlantic Philanthropy
Believes in: Social justice Reaching out to the underserved Grassroots mobilization Giving voice to the people Addressing systemic change
Rural areas
Past several decades have shown higher rates of: Limited access Poverty Limited or no insurance Mortality
Hard Times in the Heartland: Health Care in Rural America
Rural residents
More chronic conditions such as diabetes, heart disease, high blood pressure
Greater numbers with fair to poor health than urban residents
Hard Times in the Heartland: Health Care in Rural America
Lasting Change
Address root causes rather than symptoms
Focus on advocacy Continue to challenge ineffective
policies and institutions Build on strengths of communities Support leaders who work for
social change Develop partnerships
Maine Hospice Council and Center for End-of-Life Care
Reaches out to the underserved Addresses system issues Works to increase access and
utilization of Medicare Hospice Gives voice to the community Develops programs in
collaboration with others
MHC Partnerships
Hospice / Veterans Partnership Maine Pain Initiative Hospice / Prison Partnership ALS Collaborative POLST Coalition Maine Health Care Association
Veterans
96% of Veterans receive their end of life care from community-based organizations.
25% of all people who die each year are Veterans
The majority of Veterans are not enrolled in the VA
Cultural diversity
Prisoners
An aging prison population More prisoners per capita in the
US than in any country in the world
Inadequate community resources A health care crisis Increasing budget cuts Cultural issues
Can we get there from here?
“The future is now; it’s just unevenly distributed.”
William GibsonScience Fiction Writer
Are we committed to creating a more socially responsive environment for end-of-life care?
The answers are within each one of us.
Vision
Vision without action is just a dreamAction without vision just passes timeVision with action can change the world
The Power of Vision” by Joel Arthur Baker
Inspired by the writing of Loren Eiseley
“If I saw further, it was because I stood on the shoulders of giants.”
Issac Newton
Hedgehog Concept
“The essence of profound insight is simplicity”.
Jim Collins From Good to
Great
Thank you !
Thank you!