Palliative care: "one voice, one vision," the mission of professional nursing for quality of life care approaching the end of life-the South Carolina Project

South Carolina Nurse, The,  Jan-Mar 2003  by Brown, Karen M,  Timms, Janet

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"Can it be, in a world so full and busy, that the loss of one creature makes a void in any heart so wide and deep that nothing in the world other than the depth and width of eternity can fill it?"

-Charles Dickens

Nurses are the largest group of health care professionals in the United States. Nurses are present at`the beginning of life and at the end of life. Nurses are present in health care crisis when patients and families are confronted with decision-making concerns for end-of-life choices. We all have opportunities to work with death and end-of-life related concerns personally as well as professionally within our community. Death is a topic that is uncomfortable for many of us but if we are realistic, we will agree that we are all terminal.

Death was a family affair prior to 1940. The church and the community was the support of the family, children included, as the dying person was cared for at home and funeral preparations were discussed and preparations were made. Death usually was quick. The most common cause was pneumonia. With antibiotics. the life span was extended and chronic diseases such as heart disease, Alzheimer's, COPD and cancer determine the death experience. The hospital gradually became the transition for death in the 50's and 60's and families were not longer a part of the dying process. As medical advances and technology began to rule, the medical model thinking shifted to "save a life at all costs." Literature supports a general disappointment in end-of-life care (Gallup, 1997).

Professional nursing has a desire and a responsibility to create a compassionate, peaceful and productive transition for the individual and family at the end of life. As representatives of the South Carolina Nurses Association, we (Karen Brown and Janet Timms) were invited to attend the second Nursing Leadership Academy for End of Life Care, sponsored by The Institute for Johns Hopkins Nursing, August 25-29, 2002. The Open Society Institute's Project on Death in America funded the conference through the Johns Hopkins Institute. The Academy included a gathering of nurses from twenty-three state and specialty organizations from around the country. The vision of the Leadership Academy is to create "One Voice. One Vision" for nurses concerning the universal experience of dying through an interdisciplinary approach which includes all nurses. This is a concept and an issue that can unite the nursing community and is a concept and an issue in which we can all develop skill. We can develop a greater sensitivity to the holistic needs of the patient, family and community. Pain, suffering and loneliness are not meant to be part of the dying process. Nurses can play a major role in moving patient care towards the goal of a peaceful end-of-life transition into death and the management of grief for the family and community.

Topics presented at the End of Life Leadership Academy included Palliative Care, Bereavement, Culture, Communication, Change, Ethics and Symptom Management. Ideas and personal stories were shared and participants learned new ways of becoming change agents in their respective communities. Community resources were identified and discussed, including support systems which are available through organizations as well as those available via the internet. Participants met with representatives from the Hospice and Palliative Nurses Association (web site: www.h na.org). The evenings were also busy sharing opportunities as the group viewed and discussed the series "On Our Own Terms: Moyers on Dying."

We also had the opportunity during the meeting to develop a Plan of Action for our organization, The South Carolina Nurses Association. Our mentors and the other members of the group shared creative ideas for developing the plans. Some of the organizations that shared ideas with the South Carolina delegation were the Wisconsin Nurses Association, Kansas State Nurses Association, National Association of Clinical Nurse Specialists, National Black Nurses Association and the International Society of Nurses in Genetics, Inc. The South Carolina Delegation is in the process of collaborating, sharing ideas and refining a plan of action for South Carolina nurses to participate in "One Voice, One Vision."

Two excellent resources now available to us are the Toolkit for Nursing Excellence at End of Life Transition (TNEEL) created by the University of Washington School of Nursing and the End of Life Nursing Education Consortium (ELNEC) created by the American Academy of Colleges of Nursing and the City of Hope. Both programs are funded by the Robert Wood Johnson Foundation to educate nurses about palliative care and end of life. The ELNEC program and the TNEEL program specifically address the recommended competencies and curricular guidelines for end-of-life nursing care. Using these resources, we plan to create a network within South Carolina to increase nurses' ability and comfort level to work with patients facing decisions and care at the end of life.