The C.A.R.E. Coalition

Know what you want. | Discuss your choices. | Plan your future.

The C.A.R.E. (Care and Respect for End of Life) Coalition is a community-based coalition advocating on behalf of patients, caregivers, professionals and organizations to create the best continuum of care at the end of life. It is a non-profit group of volunteer members supported by private donations and grants.

There is a growing awareness that we can and must improve how we plan for each other at the end of life. Read more about end of life issues.

Care and Respect for End of Life Coalition Addresses Issues

You make an appointment with your physician because you have been feeling extremely fatigued. After countless blood tests, scans and exams your doctor sits with you and shares that your situation is very serious and there is not much treatment she can offer that will change your prognosis. She suggests you go home, get your affairs in order, and spend time with your family.

You have less than three months to live.

What things are important to you?
What are your wishes for the time you have left to live and the time of your death?

According to multiple surveys, Americans have strong preferences about the care we want at the end of our life. We want to:

• be at home, surrounded by family and friends and we want to be free of pain
• be cared for by a competent physician and nurses who know us well and listen to our concerns and wishes
• maintain a sense of control and preserve our personal dignity, as well as protect our family from physical, emotional and financial hardship

This is what we want.
Let’s examine what we get.

83% of Americans say they want to die at home. Last year 2.4 million Americans died and fewer than 20% of us died at home. Over 80% died in a healthcare facility.

We want to be pain free; however, 33% of patients who died in hospitals experienced moderate to severe pain in their final three days of life.

Over 80% of us believe making sure a patient’s wishes are enforced is extremely important; however, only 24% had told family or put into writing their wishes for end-of-life care. In South Carolina a patient’s desire to have CPR withheld is followed only 50% of the time.

Why aren’t our wishes for end-of-life care being followed?
Why is there such a discrepancy between what we want and what we get?

Perhaps it’s because we aren’t comfortable talking about tough subjects and nothing is more difficult than talking with a loved one about death. Perhaps it’s because as a culture we’ve chosen to keep death hidden away.

We no longer know what death looks like, or how to care for people at home. It might be that we are trying to make good decisions in a crisis mode. How much more meaningful for us to have these conversations long before we are faced with a terminal condition – when there is time for reflection and discussion with our loved ones and healthcare providers. This discrepancy might also reflect that our healthcare system and our society haven’t formalized effectiveness processes to ensure the choices we do make are followed.

All across the country, doctors, nurses, ministers, hospice personnel, lawyers, social workers, community leaders and patients themselves are working to change how we care for the dying. There is a growing awareness that we can and must improve how we plan for each other at the end of life. Effecting such sweeping change will require outreach to all segments of our community. Community end-of-life coalitions are community-based and require the involvement of persons from all walks of life.

Hospice & Community Care was instrumental in forming an end-of-life coalition for York, Chester and Lancaster Counties. Some coalitions have focused on general community education, others on improving communication between different parts of the healthcare systems, still others on reforming legal and ethical guidelines.

Nationwide, end-of life coalitions agree that a major goal must be open discussion of choices for care at the end of life. We must talk with our healthcare providers and our families about what are wishes are so that our wishes can be honored. Isn’t it time we talked?

The C.A.R.E. (Care and Respect for End of Life) Coalition has over 30 members form multiple religious, healthcare and human services backgrounds.

> Download the C.A.R.E. Coalition Brochure
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For more information about the C.A.R.E. Coalition, or to schedule a presentation on end-of-life choices and resources, call Hospice & Community Care at 803-329-1500 or e-mail info@hospicecommunitycare.org.