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!