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Before the Death Rattle: the End of Life Care Coalition of Eastern Carolina

This is the second in a series profiling organizations doing good work in the community. The first was on REAL Crisis Intervention.

by Alana Baker
Guardian contributor

Quick, peaceful and painless: this is one of the more idyllic ways people imagine their own deaths.

Susan Redding, a Nurse Practitioner in Palliative Care Services at Vidant Medical Center and current president of the End of Life Care Coalition of Eastern Carolina says, however, “Nine out of ten of us die at the end stages of a chronic disease. We know for a long time that we are not going to get better—that we can’t get better. You have a failing heart, failing lungs—some types of cancer. These things are not going to go away.”

“The more you can learn about how the process of dying goes, the more intelligent choices you can make about your care at the end of life,” said Redding. 

In Merchant's Alley, outside Starlight Cafe on 5th Street. Photo: Lisa Ellison

In Merchant’s Alley, outside Starlight Cafe on 5th Street. Photo: Lisa Ellison

The End of Life Care Coalition of Eastern Carolina, founded in 2001 to “create a community of compassionate care at the end of life through education, networking and support,” is a large network. Its 230 members include laypersons, medical professionals, hospice and palliative care organizations, as well as legal counselors.

Advance directives

Six times per year, Greenville-area residents can attend the coalition’s free, public “advance care planning” clinics. The organization also speaks upon invitation to community groups. “If anybody needs an advance planning clinic to create their advance directive,” said Redding, “we can support them.”

An “advance directive” is, by its most basic definition, a set of plans for care if one should become incapable of communicating those wishes. A “living will” and “durable power of attorney for health care” are the most common types of advance directive.

Advance care planning clinic leaders, trained through the nationally-recognized Respecting Choices program, provide information that is accurate, objective and free from political bias. All of the coalition’s clinics culminate with a workshop for helping attendees write their advance directives.

Advance directives are not just for the aging community, but for anyone who makes his/her own  healthcare decisions.

Palliative care

Palliative care, a small but growing subfield of the healthcare profession, aims to comfort those suffering from serious illnesses, to alleviate symptoms and improve quality of life.

There is still a long way to go in training palliative care physicians, “A lot of people, including professionals, have a misguided understanding of what that is,” said Redding, who, with other members of the coalition, recognizes an increasing public health need for palliative care training.

The End of Life Care Coalition of Eastern Carolina is taking steps to get that training here by supporting, along with the East Carolina University Medical and Health Sciences Foundation, an endowment for a palliative care professorship. In addition, the coalition is working with organizations in and around the Greenville area to bridge gaps in education for public and professional communities about the importance of advance directives in palliative care.

Talking about death

The EOLCC isn’t just about holding clinics and helping endow academic chairs. “We can help [people] have the [end-of-life] conversations with their families,” said Redding.

The coalition works to make that conversation less stressful by reaching out to the community through their clinics and other public events, such as their 2013 panel discussion on José Saramago’s novel Death with Interruptions.

More recently, the coalition brought the “Before I Die” wall campaign to Greenville.

Redding explained that the “Before I Die” project began in 2011, when an artist in New Orleans spread chalkboard paint on the side of a building. The idea was to create a “community bucket list” for people to list the things they wanted to accomplish before they die. Currently, there are at least 550 boards in 75 countries.

“Our Coalition representatives will monitor the board and we will watch it fill up,” said Redding. “You can put whatever you want to do on that board, and if it rains that night, it gets washed off. It’s an exercise in getting people to think about the fact that we won’t get to live forever.”

To view the events schedule for the End of Life Care Coalition of Eastern Carolina, including advance care planning clinics and events such as the “Before I Die” campaign, to make a donation, or to become a volunteer, visit their website at http://www.endoflifecarecoalition.org/EOLCCEC/Home.html or give them a call at (252) 847-4972.

Alana Baker is a PhD student in Rhetoric, Writing and Professional Communication at East Carolina University.

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