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

Dula Sentle

The Children

At Home

Otse, Botswana One focus One focus Working together Working together Listening to the children Listening to the children Identifying needs Identifying needs Problem-solving Problem-solving A sense of community A sense of community Vision and action Vision and action Volunteer assistance Volunteer assistance Partnerships/collaboration Partnerships/collaboration

The Focus for Maine We need to decide where we want to go. We need to decide where we want to go. Is it quality end of life care for all patients and families? 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 will it take? What is missing? What is missing? Why is it taking so long? 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. 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. 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. 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. 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 Universal access Quality standards across all settings Quality standards across all settings Accountability Accountability Critical mass (consumer engagement) Critical mass (consumer engagement)

What Will It Take? Individual empowerment Individual empowerment Increased advocacy and activism Increased advocacy and activism Awareness that there are inadequacies Awareness that there are inadequacies Innovative education initiatives Innovative education initiatives Widely accessible and understandable quality indicators Widely accessible and understandable quality indicators Community engagement Community engagement Accountability Accountability Paid family care-giving Paid family care-giving Appropriate research agenda Appropriate research agenda Mentoring programs Mentoring programs More collaboration among health care providers 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 Limited access Poverty Poverty Limited or no insurance Limited or no insurance Mortality Mortality Hard Times in the Heartland: Health Care in Rural America

Rural residents More chronic conditions such as diabetes, heart disease, high blood pressure More chronic conditions such as diabetes, heart disease, high blood pressure Greater numbers with fair to poor health than urban residents 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 Address root causes rather than symptoms Focus on advocacy Focus on advocacy Continue to challenge ineffective policies and institutions Continue to challenge ineffective policies and institutions Build on strengths of communities Build on strengths of communities Support leaders who work for social change Support leaders who work for social change Develop partnerships Develop partnerships

Maine Hospice Council and Center for End-of-Life Care Reaches out to the underserved Reaches out to the underserved Addresses system issues Addresses system issues Works to increase access and utilization of Medicare Hospice Works to increase access and utilization of Medicare Hospice Gives voice to the community Gives voice to the community Develops programs in collaboration with others Develops programs in collaboration with others

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

Veterans 96% of Veterans receive their end of life care from community-based organizations. 96% of Veterans receive their end of life care from community-based organizations. 25% of all people who die each year are Veterans 25% of all people who die each year are Veterans The majority of Veterans are not enrolled in the VA The majority of Veterans are not enrolled in the VA Cultural diversity Cultural diversity

Prisoners An aging prison population An aging prison population More prisoners per capita in the US than in any country in the world More prisoners per capita in the US than in any country in the world Inadequate community resources Inadequate community resources A health care crisis A health care crisis Increasing budget cuts Increasing budget cuts Cultural issues Cultural issues

Can we get there from here?

“The future is now; it’s just unevenly distributed.” “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?

The answers are within each one of us.

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 Jim Collins From Good to Great From Good to Great

Thank you !