Palliative and end-of-life care

AAACN Viewpoint, Jan/Feb 2003 by Reifsteck, Sandra W, Gordon, Geoffrey H

Are Nurses Ready to Take the Lead?

Palliative and end-of-life care has only recently received the attention it deserves. The bad news is that much of it falls short of the goal of meeting patients' physical, psychological, and spiritual needs. The good news is the success of end-of-life care depends largely on the quality of clinician-- patient communication.

Specific communication skills such as eliciting the full range of patients' concerns without interrupting or blocking; making explicit empathic statements; providing information in the context of patients' values and goals; and sharing decisions to the extent desired can reduce patients' distress.

Effective communication can also improve patient satisfaction, ability to cope, and quality of life as patients with progressive chronic illness enter end-of-life care.

In addition, collaboration and communication skills are needed between physicians, nurses, social workers, and all members of the team who work with the chronically ill and their families.

Where does nursing fit into the latest research on patient and family involvement on this issue? Nursing educators and researchers are addressing the needs and sharing in this research at two levels: including end-of-life education in colleges of nursing and educating practicing nurses across the country.

Background

An article in the journal Continuing Care reported last year that nursing schools across the country are offering the training necessary for nurses to meet the challenge of improving quality of life for the dying based on recommendations by the National Cancer Policy Board, the Institute of Medicine (IOM), and the National Research Council (Cox, 2002).

In the same article, Betty R. Ferrell, PhD, RN, stated that "The need to improve palliative care, including end-of-life care, has been regularly and rightly publicized since the late 1990s and became more focused after the IOM issued recommendations. Funding by the Robert Wood Johnson Foundation in collaboration with the American Association of Colleges of Nursing and City of Hope has also supported the need for improvement of palliative care issues. This group is referred to as the End-of-Life Nursing Education Consortium (ELNEC). Their program is the most farreaching national educational end-of-life program for nurses that has been launched to date as reported by IOM study director Helene Gelbard" (Cox, 2002, p. 30).

The Institute for John Hopkins Nursing in Baltimore, MD, is leading an educational effort which is referred to as the Nursing Leadership Academy for Endof-Life Care. This initiative, funded by the Open Society Institute Project on Death in America consists of a 4-day workshop for leaders of professional nursing organizations.

In 2002, the workshop was held on August 25-30 in Baltimore. Participants represented over 40 national professional nursing organizations and a total of 1.5 million nurses. As part of an ongoing effort, the participants will reconvene in August to report on progress within their respective organizations.1

The explicit goal of the Academy is to improve end-of-life care by increasing leadership capacity within national professional nursing organizations. The objectives include:

* Educating nurse leaders

* Creating a system of support and mentoring

* Developing and implementing innovative strategies Prior to the commitment of the American Association of Colleges of Nursing (AACN) and the creation of the Nursing Leadership Academy for End-of-Life Care, an educational program for physicians, Educating Physicians in End-of-life Care (EPED), was developed and disseminated with support from the Robert Wood Johnson Foundation, the American Medical Association, and the Soros Project on Death in America. The project's core curriculum provides basic knowledge and skills for physicians to appropriately care for dying patients. It also includes information for advanced care planning, pain management, and communication skills (vonGuten, 2000).

The efforts listed above show that physicians, nurses, and many other disciplines are increasingly interested in the palliative care movement and end-of-life issues that the nation faces as America's aging population grows.

Nursing-Based Theory

Bonnie J. Miller, RN, DMin, Associate Professor of Nursing in Cincinnati, Ohio, shares her view on nursing theory: "Many nursing theorists theorize and make scientific inquiries to make us fit into academia. Thus we may loose our depth of understanding of the human soul that is important at times of illness and suffering" (Miller, 2002, p. 10).

A leading nurse theorist Martha Rogers, who has served for 21 years as professor and chair of the Division of Nursing at New York University, is a well known influential theorist in nursing and is often quoted in the nursing field. The central concern of Rogers' theory is the concept that human beings are dynamic. Her philosophy and science of caring focuses on the belief that caring is the role that guides the nurse in practice (Miller, 2002).