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Background
In recognition of the universal
need for humane end of life care, the American Association
of Colleges of Nursing, supported by the Robert Wood Johnson
Foundation, convened a roundtable of expert nurses and other
health care professionals to stimulate scholarly discourse
and initiate change on this important reality. This is in
accord with the International Council of Nurses' 1997 mandate
that nurses have a unique and primary responsibility for ensuring
that individuals at the end of life experience a peaceful
death.1
The
United States is facing the realities of an aging population,
a recognition of the limits and inappropriate use of technological
resources, and concerns about the capabilities of health care
providers. Additionally, the increase in demand for assisted
suicide and apprehensions of the public about suffering and
expenses associated with dying that may be prolonged unnecessarily
by technology contribute to a renewed interest in humane end-of-life
care. Increased awareness of the success of hospice as an
alternative model of care has served as a catalyst for integrating
palliative care into traditional models of care delivery.
Precepts
underlying
hospice care are essential principles for all end-of-life
care. Such precepts include the assumptions that individuals
live until the moment of death; that care until death may
be offered by a variety of professionals; and that such care
is coordinated, sensitive to diversity, offered around the
clock, and gives attention to the physical, psychological,
social, and spiritual concerns of the patient and the patient's
family. These precepts provide guidance to the development
of the educational preparation of nurses. However, educational
preparation for end-of-life care has been inconsistent at
best, and sometimes neglected within nursing curricula. This
document is intended to address these deficiencies. Given
the likelihood that care will be given by a variety of health
care professionals, it is essential that such preparation
be interdisciplinary in its approach to preparing students
for the end-of-life practice in which they will engage.
The
roundtable's group of health care ethicists and palliative
care experts developed the End-of-Life Competency Statements
presented here, which every undergraduate nursing student
should attain.
Finally,
the group made recommendations concerning the content areas
where these competencies could be addressed.
Competencies
Necessary for Nurses to Provide High-Quality Care to Patients
and Families During the Transition at the End of Life
- Recognize
dynamic changes in population demographics, health care
economics, and service delivery that necessitate improved
professional preparation for end-of-life care.
- Promote
the provision of comfort care to the dying as an active,
desirable, and important skill, and an integral component
of nursing care.
- Communicate
effectively and compassionately with the patient, family,
and health care team members about end-of-life issues.
- Recognize
one's own attitudes, feelings, values, and expectations
about death and the individual, cultural, and spiritual
diversity existing in these beliefs and customs.
- Demonstrate
respect for the patient's views and wishes during end-of-life
care.
- Collaborate
with interdisciplinary team members while implementing
the nursing role in end-of-life care.
- Use
scientifically based standardized tools to assess symptoms
(e.g., pain, dyspnea [breathlessness] constipation, anxiety,
fatigue, nausea/vomiting, and altered cognition) experienced
by patients at the end of life.
- Use
data from symptom assessment to plan and intervene in
symptom management using state-of-the-art traditional
and complementary approaches.
- Evaluate
the impact of traditional, complementary, and technological
therapies on patient- centered outcomes.
- Assess
and treat multiple dimensions, including physical, psychological,
social and spiritual needs, to improve quality at the
end of life.
- Assist
the patient, family, colleagues, and one's self to cope
with suffering, grief, loss, and bereavement in end-of-life
care.
- Apply
legal and ethical principles in the analysis of complex
issues in end-of-life care, recognizing the influence
of personal values, professional codes, and patient preferences.
- Identify
barriers and facilitators to patients' and caregivers'
effective use of resources.
- Demonstrate
skill at implementing a plan for improved end-of-life
care within a dynamic and complex health care delivery
system.
- Apply
knowledge gained from palliative care research to end-of-life
education and care.
The
purpose of the competency statements is to assist nurse
educators in incorporating end-of-life content into nursing
curricula. This document is developed with the understanding
that few schools of nursing would offer a discrete course
in end-of-life care. Thus, this document offers an approach
to incorporating end-of-life content throughout the currently
existing curriculum.
Content Areas Where Competencies
Can Be Taught
Nursing schools use a variety of approaches to organize
curriculum. There are common content areas, even though the
particular courses may have different titles at different
schools. Below are content areas, or courses, where various
aspects of end-of-life care can logically be included.
Health Assessment
In a course on health assessment, students should be taught
to use standardized assessment tools for common problems experienced
at the end of life. Such tools might include visual analogue
or numeric rating scales to quantify pain or dyspnea. Since
analysis of a symptom always includes assessment of intensity,
this would be an appropriate opportunity to discuss the value
of rating scales for initial and on-going assessment (competency
#7).
For
inclusion in the health assessment course, the roundtable
participants also strongly advocate content on common symptoms
experienced at the end of life, appropriateness of various
physiological measures for evaluating comfort in the dying
person, and the indicators of approaching death (competency
#7).
Pharmacology
The introduction of appropriate pharmacologic management
of symptoms, with a focus on palliative care, is an important
part of the curriculum. Included in this content should be
use of equianalgesic tables and discussion of the negative
impact of myths and misconceptions surrounding use of analgesics.
Assessment and management of side effects of analgesics, such
as constipation and nausea, should be addressed (competency
# 8).
Psychiatric-Mental Health
Coursework that addresses psych-mental health and communication
issues provides multiple opportunities to discuss end of life
issues, for example:
- communication with the patient and family (competency
#3);
- eliciting
patient's and family's wishes for end-of-life care (competency
#4);
- recognition
of the student's own attitudes, feelings, and expectations
about death (competency #5);
- preparing
the patient's family for decline in emotional and cognitive
status (competency #10); and
- assisting
the patient, family, and colleagues to cope with suffering,
grief and loss, and crisis in the family (competency # 11).
Nursing Management Courses
Nursing management courses usually include pathophysiology
of disease and use of the nursing process to assist patients
in the management of problems associated with disease. Within
these nursing management courses, faculty can incorporate
specific learning objectives related to management of end-of-life
illness, such as:
- provision
of comfort care to the dying as an active, desirable, and
important service (competency #2);
- collaboration
with interdisciplinary team members while implementing the
nursing role in end-of-life care (competency #6);
- assessment
and management of symptoms that occur near the end of life
in persons with end-stage cardiac, pulmonary, and renal
disease, cancer, dementia, immuno-suppression, and other
conditions that may lead to death (competencies #7 and #8);
- evaluation
of the impact of nursing interventions on patient outcomes
(competency #9); and
- implementation
of end-of-life care with appropriate use of technology as
desired by patients and their families (competency #8).
Faculty
teaching these courses should integrate this content into
their specific courses, as appropriate. For example, if the
course takes a body-systems approach, the faculty member could
talk about expected symptoms in each system near the end of
life.
Ethical/Legal Content
Coursework that assists nursing students in identifying
and assessing their own attitudes towards death, as well as
teaching respect for others' attitudes and values, should
be an integral part of the nursing curriculum (competency
#4).
Faculty
covering ethical-legal content might include content on:
- relevant
state and federal laws regarding informed consent, advance
directives, portable (community based) do-not-resuscitate
orders, etc. (competency #12);
- common
legal myths and professional misperceptions regarding end-of-life
care (competency #12); and
- differences
between laws, institutional policies, personal values, family
values, and professional values and ethics (competency #12)
Cultural Issues Content
Increasingly, nursing education includes content about culture.
Faculty who teach this content should incorporate cultural
influences on attitudes and beliefs about death and dying
in the cultures represented in the surrounding community (competency
#5).
Nursing Research
Courses that address nursing research should include examples
of research done in palliative care settings and in settings
where death is a frequent outcome. For example, a number of
nursing studies have been published in the areas of symptom
assessment and management, family member bereavement, and
quality of life in palliative care settings (competency #15).
Professional Issues/Health Care Settings
A discussion of hospice as a type of health care model should
be included in the curriculum. Professional issues surrounding
providing care in the home, the role of the family caregiver,
and the role of the nurse in supporting the family caregiver
should also be addressed in addition to the professional issues
surrounding provision of palliative care within traditional
acute and clinic settings (competencies #1, #10, #11).
References
1
International Council of Nurses. (1997). Basic Principles
of Nursing Care. Washington, DC: American Nurses Publishing.
Participants
Robert
Wood Johnson Foundation End-of-Life-Care Roundtable
November 11 -12, 1997
ANA Hotel
Washington, DC
Inge
Corless, PhD
Professor
MGH Institute of Health Professions
Graduate Program in Nursing
Boston, MA
Cecilia
Eagen (Sister Cecilia), PhD
Director, Hospice Education
Madonna University
Livonia, MI
Betty
Ferrell, PhD
Associate Research Scientist
City of Hope National Medical Center
Duarte, CA
Barbara
Given, PhD
Professor
College of Nursing
Michigan State University
East Lansing, MI
Ed
Halloran, PhD
Professor
School of Nursing
University of North Carolina - Chapel Hill
Chapel Hill, NC
Bernard
"Bud" Hammes, PhD
Director, Medical Humanities
Gundersen Lutheran Medical Center
La Crosse, WI
Susan
McMillan, PhD
American Cancer Society Professor of Oncology Nursing
College of Nursing
University of South Florida
Tampa, FL
Paula
Nelson-Marten, PhD
Professor
University of Colorado Health Sciences Center
School of Nursing
Denver, CO
Kathleen
Puntillo, DNSc
Associate Professor
School of Nursing
University of California - San Francisco
San Francisco, CA
Cindy
Rushton, DNSc
Professor
School of Nursing
Johns Hopkins University
Baltimore, MD
Sarah
Shannon, PhD
Professor
Dept. of Biobehavioral Nursing and Health Systems
University of Washington
Seattle, WA
Deborah
Sherman, PhD, ANP, CS
Assistant Professor
Division of Nursing
New York University
New York City, NYDenice Sheehan, MSN, CRNH
Coordinator of Palliative Care
Breen School of Nursing
Ursuline College
Pepper Pike, OH
Barbara
Stewart, PhD
Professor
Lienhard School of Nursing
Pace University
Pleasantville, NY
Diana
Wilkie, PhD
Associate Professor & American Cancer Society Professor
of Oncology Nursing
Dept. of Biobehavioral Nursing and Health Systems
University of Washington
Seattle, WA
The
Robert Wood Johnson Foundation Staff:
Rosemary
Gibson
Program Director
The Robert Wood Johnson Foundation
Princeton, NJ
American
Association of Colleges of Nursing Staff:
1 Dupont Circle, NW, Suite 530
Washington, DC 20036
Anne
Rhome
Director, Member Education
arhome@aacn.nche.edu
Martha
Mihaly
Special Projects Manager
Joan
Stanley
Director of Education Policy
Facilitator:
Mary
Peterson
Director of Development
College of Nursing
Montana State University
Bozeman, MT
(February
1998)
Related
AACN Documents
AACN
Chosen by The Robert Wood Johnson Foundation to Coordinate
National Effort to Improve End-of-Life Nursing Care
(News Release - March 3, 2000)
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