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Improving End of Life Care: It Takes a Community

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

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  1. 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

  2. Reflection • A good teacher teaches what s/he has been taught. • A wise teacher shares what s/he has learned.

  3. DulaSentle

  4. The Children

  5. At Home

  6. 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

  7. 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?

  8. If so, can we get there from here? • What will it take? • What is missing? • Why is it taking so long?

  9. 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

  10. What Is Missing? • Universal access • Quality standards across all settings • Accountability • Critical mass (consumer engagement)

  11. 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

  12. We must begin working together

  13. “…the free and open exchange of ideas is the vital pulse of scientific inquiry.” Michael Polanyi Philosopher of Science

  14. Atlantic Philanthropy Believes in: • Social justice • Reaching out to the underserved • Grassroots mobilization • Giving voice to the people • Addressing systemic change

  15. 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

  16. 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

  17. 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

  18. 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

  19. MHC Partnerships • Hospice / Veterans Partnership • Maine Pain Initiative • Hospice / Prison Partnership • ALS Collaborative • POLST Coalition • Maine Health Care Association

  20. 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

  21. 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

  22. Can we get there from here?

  23. “The future is now; it’s just unevenly distributed.” William Gibson Science Fiction Writer

  24. Are we committed to creating a more socially responsive environment for end-of-life care?

  25. The answers are within each one of us.

  26. 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

  27. “If I saw further, it was because I stood on the shoulders of giants.” Issac Newton

  28. Hedgehog Concept “The essence of profound insight is simplicity”. Jim Collins From Good to Great

  29. Thank you ! Thank you!

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