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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.
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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. • A wise teacher shares what s/he has learned.
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
“…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
“The future is now; it’s just unevenly distributed.” William Gibson Science Fiction Writer
Are we committed to creating a more socially responsive environment for end-of-life care?
Vision Vision without action is just a dream Action without vision just passes time Vision 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!