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A ROLE DESCRIPTION FOR ADVANCED PRACTICE NURSES WITHIN THE
HOSPICE CONSTRUCT

By

Glenna Lou Nelson

A SCHOLARLY PROJECT

Submitted to
Michigan State University
in partial fulfillment of the requirements
for the degree of

MASTERS OF SCIENCE
College of Nursing

1997

ABSTRACT

A ROLE DESCRIPTION FOR ADVANCED PRACTICE NURSES WITHIN THE
HOSPICE CONSTRUCT

By

Glenna Lou Nelson

There is an opportunity to improve the delivery and the quality of health care to
the hospice population. The purpose of this project was to first identify the need for
advanced practice nurses within the context of hospice care, and second, to develop a role
description for utilizing such nurses. Thirdly, this project suggests a means by which the
advanced practice nurse’s effectiveness in patient/family satisfaction, patient outcomes,
and cost effectiveness can be evaluated. A literature search has revealed that very little
has been published on this topic. Therefore, this role description suggests a
comprehensive outline and plan addressing the role, implementation, and effectiveness of
the advanced practice nurse within hospice. This role description has the potential for
adoption and implementation by any hospice team and may result in improved delivery

and quality of end of life care for all.

Copyright by
GLENNA LOU NELSON
1997

This project is lovingly dedicated to my wonderful family: my grandparents,
parents, brothers and sisters, husband, children, and grandchildren. Without their
unconditional love, support, and faith in me, I would never have reached this goal. They
all have played a vital part in my life, my focus, and my accomplishments. I love them
all very much and owe them everything. I take this opportunity to thank them and to

acknowledge their tremendous contributions to my life.

iv

ACKNOWLEDGMENTS

I would like to thank the Michigan State University College of Nursing
instructors, members of my committee, Patty Peek, R.N., M.S., Louise Selanders, R.N.,
Ed.D. and especially Sharon King, R.N., C.S., PhD. for providing the instruction,
counsel and assistance I needed to complete this endeavor. My longstanding goal of
becoming a gerontological nurse practitioner would never have been realized had it not
been for their commitment and dedication to nursing education and to the individual
students.

I would also like to thank the staff in the outreach library, especially Amy Blair,
for providing needed articles with promptness and friendliness. I appreciate the time she
and her staff spent in searching for and sending all the requested information.

My thanks and appreciation also go to my dear friend, Bethany Hartrum, R.N.,
C.S. for her encouragement and friendship. I could not have endured and completed this
career goal without her.

Hospice of Michigan has provided me with the opportunity for growth,

knowledge and experience within hospice. I am grateful to be a part of this organization.

TABLE OF CONTENTS

LIST OF FIGURES ..................................................................... viii

INTRODUCTION ......................................................................... 1

BACKGROUND OF THE PROBLEM ................................................ 3

PURPOSE ................................................................................... 5
DEFINITION OF CONCEPTS .......................................................... 6
CONCEPTUAL FRAIVIEWORK ...................................................... 10
REVIEW OF LITERATURE ........................................................... l9
METHODOLOGY ....................................................................... 26
PROCEDURE FOR MPLEMENTING SERVICES ............................... 27
EVALUATION OF SERVICES ....................................................... 31
IMPLICATIONS FOR ADVANCED PRACTICE ................................. 34
IMPLICATIONS FOR EDUCATION ................................................ 35
MLICATIONS FOR RESEARCH .................................................. 36
CONCLUSION ........................................................................... 37
REFERENCE LIST ...................................................................... 39

vi

LIST OF FIGURES

Figure l — Peplau’s Framework: Major Concepts and Their Inter-Relationships ......... 12

vii

INTRODUCTION

What do dying people need and want? What are some of the greatest fears and
challenges that people at the end of life encounter? How are these needs, wants, fears,
and challenges met? These and many other questions are especially relevant in 1997
because all people are faced with the dilemma of end of life care whether for themselves
or their loved ones. The fact that we are all faced with the dilemma has not made it any
easier for our society to realistically face, deal with, or agree upon the issues surrounding
this phase of the life cycle.

Hospice is one approach to end of life care. This specialized holistic health care
system, comprised of an interdisciplinary team, is capable of providing pain and
symptom management in addition to psychosocial support for patients and families
coping with an irreversible illness. “The primary concern of hospice is LIFE and living it
to the fiillest extent possible while allowing death to occur naturally. . .LIVING while
dying may seem a contradiction in terms, but it is a very real aspect of hospice
care”(Ekhart, 1988, p9).

Advance practice nurses (APNs) are independent healthcare practitioners who
work collaboratively with physicians. Their independence resides in their orientation and
training. Most APNs’ education includes a base of four years of college and an
additional two years in a master’s program. Nursing, the center of the orientation of
APNs, emphasizes the total needs of the patient and family, counseling, teaching and

maintaining health (DeAngelis, 1994).

2

Safriet (1992) states that APNs are capable of a wide range of nursing and
medical functions that were traditionally performed by physicians. Assessing,
diagnosing, ordering laboratory and other diagnostic tests, conducting physical
examinations, prescribing some medications, developing and implementing treatment
plans, monitoring patient status for acute and chronic illnesses, consulting, collaborating
with and referring to other providers are some of the fimctions. APNs are educated to
provide diagnoses, management of acute and chronic illnesses, and disease prevention
education and health promotion.

Advanced practice nurses working within the hospice construct can enhance end
of life health care by facilitating excellent case management, timely and sophisticated
interventions, and by upgrading the awareness of the other providers. When the
advanced practice nurse is the primary care agent, continuity, accessibility and
comprehensive coordination are the elements most apparent (Ebersole & Enloe, 1983).
The knowledge, expertise, and experience of an APN in holistic health care are all assets
to a hospice organization in the delivery of care to the terminally ill patient. The hospice
concept is a growing alternative in our country. Hospice patients in the United States
have grown from the first patient in 1974 to more than 340,000 patients with more than
2,510 hospice agencies providing care through July, 1995 (Lubash & Dunn, 1996).

. Health care costs are also an issue in the health care and hospice arenas.
“Advanced practice nurses have been underutilized despite research evidence supporting
their efficacy, cost-effectiveness, and value in providing quality primary health care

services” (Sullivan, 1992, p. 236).

In order to remain major players in the current managed care environment,
hospices are in need of cost-saving alternatives. The cost of the implementation of
services must be attractive to third party payors if hospices are to continue to offer
hospice care to patients and families at the end of life. Therefore, a role description for
advanced practice nurses within the hospice construct may offer a cost effective,

evaluative, and usefiJl tool for hospice organizations throughout the nation.

BACKGROUND OF THE PROBLEM

There are currently more than one thousand hospice patients in a large not for
profit hospice in the Midwest and 340,000 hospice patients nationwide (ML. Huber,
personal communication, March, 20, 1997 & Lubash & Dunn, 1996). These patients
have complex needs, desires, fears, and challenges. In the present situation these needs,
desires, fears, and challenges are at risk for remaining unfiilfilled by hospices. This is
because most of the reimbursement for hospice comes from the federal government
through the Medicare hospice benefit. Seventy percent of the above mentioned hospice
patients are Medicare patients (C. Casson, personal communication, February 11, 1997).
Hospices are provided per diem payments for each patient. Out of this per diem, the
hospice pays for everything that is directly related to the terminal diagnosis, including
medications, equipment, and services such as nursing, social work, and home health aide
visits.

With managed care now capitalizing on the market, and with the potential of

restructuring Medicare into a managed care model, the hospice construct is at risk

4
because the dollar can be stretched just so far. Who will the managed care companies
contract with to provide end of life care? Will they understand what quality end of life
care is and how vital it is to patients and their families? Will they access people who are
true hospice providers or will they access those who deliver less than comprehensive
hospice care?

There are many hospitals, home care agencies, and other organizations that have
not had any hospice education or training but yet are bidding for “hospice care” with the
health maintenance organizations and winning contracts for delivery of hospice care.
Some of these organizations have never given hospice care (C. Casson, personal
communication, May 14, 1996). Advanced practice nurses within hospices offer a real
opportunity to provide quality cost-effective end of life care within any of the constructs.

Currently there are no federal Medicare regulations or guidelines that address the
use of or reimbursement for advanced practice nurses within hospice. The need to revisit
the governmental guidelines for end of life care within the present health care arena has
become quite evident.

Hospices are challenged to find a way to utilize APNs within their per diem
reimbursement. Some suggestions for this may be to rewrite the Medicare hospice
benefit guidelines, (a project that is currently underway), or to work within the guidelines
by developing protocols with the medical directors, or simply contracting with the
medical directors of hospice organizations. Another approach would be for the managed

care organizations to list APNs as approved providers.

The current composition for the hospice team includes a physician (medical
director) and/or an attending physician, the registered nurse, licensed practical nurse,
social worker, spiritual advisor, home health aide, home service aide, and the lay
volunteers. Each of these team members has a specific job description and regulations
surrounding the specific role. Hospice agencies have many other specific regulations
governing their operations, all dictated through Medicare and the state departments of
Consumer and Industry services. With the need for change identified, the stage is set for
the development and implementation of a role description for advanced practice nurses
within the hospice construct.

PURPOSE

Because advanced practice nurses are currently underutilized but well equipped
and available to provide expertise and cost effectiveness, the purpose of this project is to
develop a role description for their participation within the hospice construct. The role
description will be a specific job description, outlining qualifications, fimctions and
services, roles and responsibilities.

Kuebler (1997) believes that as advanced practice nurses move into the area of
hospice, job descriptions, clinical protocols, standards of practice, specialized training,
and education must be promoted and distributed to the consumer and to the health care
system. This project will attempt to assist in that goal.

This role description will be based upon Hildegard Peplau’s developmental model
of nursing. The inherent values of this model include 1) people as unique individuals

(equal partners in the care), 2) the necessity of a working, trusting relationship between

6
patient, family and nurse, and 3) the flexibility of application to different clinical settings.
All of these values will be beneficial in applying this model to the participation of the

advanced practice nurse within the hospice construct (Simpson, 1994, p. 94).

DEFINITION OF CONCEPTS

Role Description: Webster defines role as “a socially accepted behavior pattern
usually determined by an individual’s status in a particular society” (Mish, 1983, p,
1021). The American Academy of Nurse Practitioners define the APNs' professional role
as nurses serving as health care patient advocates, interdisciplinary consultants and
resources (AAPN, 1993). They suggest that the APNs’ role evolves in response to health
care needs and changes and in response to the changing society in which they practice.
The role description for this project will be defined as a descriptive framework outlining
qualifications, functions and services, and roles and responsibilities.

Advanced Practice Nurse: An advanced practice nurse is a registered nurse who
has completed a graduate level of education and/or is certified in an area of specialization
(ANA, 1991).

“Advanced practice nurses are primary health care providers. They provide
nursing and medical services to individuals, families and groups, emphasizing health
promotion and disease prevention, as well as the diagnosis and management of acute and
chronic diseases. Services include but are not limited to ordering, conducting and
interpreting appropriate diagnostic and laboratory tests, prescription of pharmacological
agents and treatments and non-pharmacological therapies. Teaching and counseling

individuals, families and groups are a major part of advanced practice nurses’
activities”(AAPN, 1993, p. 1).

7

There are four categories of advanced practice nurses: (a) Certified Registered
Nurse Anesthetists, (b) Certified Nurse-Midwives, (c) Clinical Nurse Specialists, and (d)
Nurse Practitioners. More will undoubtedly emerge to meet future needs.

Hospice: Webster defines hospice as a “program designed to provide a caring
environment for supplying the physical and emotional needs of the terminally ill” (Mish,
1983). Hospice is much more than that, however. Spector (1994) in her article, “What
Makes Hospice Unique” for Hospice Nursing Perspective, describes hospice as a
philosophy that provides empathetic, holistic, sympathetic, personal care to the dying and
to their families. At the most critical phase of family life, hospice creates an atmosphere
of spiritual meaning. It does not seek to cure, but to palliate. Hospice provides care in all
settings, homes and institutions and does not end when the patient dies but provides
bereavement care to the family and friends of the deceased.

Lebanowski (1997) describes hospice in much the same way. She states that it is
an interdisciplinary program that provides pain and symptom management and supportive
services to the terminally ill and to their families. She says that the essential
characteristics of hospice include non-abandonment, willingness to bear witness, care
management across settings, bereavement care for the family and care provided
regardless of ability to pay (Lebanowski, 1997).

Hospice services include spiritual care for the patient and the family, volunteer
hours for companionship and emotional support, and psychosocial support for death and

dying issues, financial and legal concerns, and grief and mourning. Therapies such as

8
physical, occupational, and speech, and alternative therapies such as music, art, and
massage are available. Dietary counseling, nursing assessments, support and teaching
with twenty-four hour availability is also included. Home health aide services provide
the patient with personal care and provide the caregiver with support and relief from the
intensity and overwhelming tasks of caring for the terminally ill.

Hospice goals include affirming life, acknowledging death as a part of life,
aggressively managing pain and symptoms, maximizing quality of life, alleviating
suffering, and preserving the potential for human grth at the end of life (Lebanowski,
1997). Hospice neither postpones nor hastens death, it affirms life until death,
emphasizing quality of life not the length of life. It empowers patients to live pain free
with dignity and involves families in the care. A major goal is satisfactory mental and
spiritual preparation for death (National Hospice Organization, 1997).

The definition of hospice must also include the levels of care and the
reimbursement structure. Hospice provides for four levels of care: (1) home care, (2)
inpatient care, (3) respite care, and (4) continuous care. Home care is the routine
palliative, symptom management care that is provided in the home setting. However,
home care can also include extended care facilities and adult foster care homes. These
facilities are considered the patient’s home. Inpatient care is provided for symptoms that
may become out of control and for other situations not related to the life-limiting illness.
The hospital contracts enable the hospice to provide for their patients within the inpatient

setting.

9

Respite care is a level of care particularly designed for the caregiver.
Arrangements are made with either extended care facilities or hospitals for the patient to
stay for three to five days in the facility while the caregiver rests, travels out of town, or
just regroups and adjusts the plan of care with the team. It provides a means by which a
crisis can be defiJsed and allows time for other alternatives to be put in place.

Continuous care is the ability of the hospice team to provide twenty-four hour
coverage in the home or facility in support of the family and the patient. This can be
done in the event of a medical emergency or the active dying process.

The Hospice Association of America (1997) states that hospice care is cost-
effective. In 1995 the charges per hospital day were estimated at $1,810, $323 in a
skilled nursing facility and $105 per covered day of hospice care. Ninety percent of
hospice services are delivered in the home and that saves an estimated $2,884 over non-
hospice users or $1.68 for every dollar spent in the last month of life (Hospice
Association of America, 1997).

Reimbursement for hospice agencies comes from Medicare, Medicaid, and third
party payors. These sources provide strict guidelines within which a hospice agency
must practice. Michigan Department of Consumer and Industry Services surveyors, and
focused medical review teams visit the agencies, review charts and decide on compliance
to the regulations. They are empowered to make recommendations to the state based on
their findings. Other sources of funding for hospices include memorials, gifts, and

fiJndraisers. Most hospices provide care for patients regardless of their ability to pay.

10

Patient and Family: This concept is defined as a unit of care or the recipients of
hospice services. In most cases, it is not possible to consider the patient without the
family. The hospice philosophy helps preserve one of our country’s most important
social values: keeping families together and allowing family members to actively
participate in the care of their loved one (Hospice Association of America, 1997).

The patient is the person with a life-limiting diagnosis, a disease process that
cannot be cured and for whom the prognosis is approximately six months if the disease
runs its normal course. This person is the focus of palliative medical care, and
psychological, social, and spiritual support. This support is also provided to the patient’s

family, which is defined, as all those who are related to or provide for the patient.

CONCEPTUAL FRAMEWORK

A nursing model that provides a comprehensive framework for hospice nursing is
Hildegard Peplau’s Developmental Model (Figure l)(Forchuk & Brown, 1989). The
main theme of this model is the skill of interaction. Peplau “sees nursing as an educative
instrument, a maturing force that aims to promote forward movement of the personality
in the direction of creative, constructive, productive, personal and community living”
(Forchuk, Brown, Crawford, Ide, Voorberg, & Bethune, 1989, p. 36). This fits with
hospice nursing because so much of hospice involves relationships, interaction, trust

building, and communication beyond the superficial level. Hospice patients are facing

11
one of the most important times in their lives, a time that requires much inner work, soul-
searching, growth and development.

Nursing involves looking for suitable frameworks in which to practice, and assist
clients to fiill recovery, assisted independence, or to a peacefiil death (Simpson, 1991).
Simpson states that Peplau’s model provides nurses with a structure to direct their
thinking, feelings, and actions and that the cornerstone of success is the nurse-
patient/family relationship. The model also provides flexibility enough to be used in
different clinical settings (Simpson, 1991).

Ira Byock, M.D., a well-known hospice physician and advocate, sees hospice as
an agent to assist the patient in the resolution of life relationships and problems, in the
achievement of growth and development in dying, and in understanding the human
capacity to experience meaning and value within illness and dying (Byock, 1997).
Peplau’s model can assist the advance practice nurse in working toward this goal because
the model views interactional dynamics as an avenue for exploring and understanding the
patient’s needs, feelings, attitudes, and beliefs within a relational partnership (Simpson,
1991)

The major concepts and their inter-relationships are depicted in Figure 1 (F orchuk
& Brown, 1989). Within this model it is of major importance that patients learn about
themselves, using their abilities to express themselves fiJlly and freely to a nurse, thus
maximizing their chances for further personal development (Simpson, 1991). Cheryl
Forchuk, RN, MScN (1991), explained Peplau’s major concepts in detail in her paper,

“Peplau’s Theory: Concepts and Their Relations (1991).

12

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13

The model is based on the assumption that people need support in retaining or
achieving maximum potential to function within the society that influences their growth
and maturation. Man is comprised of physical, psychological and social needs and when
these needs are met, man grows and develops as human beings, seeking more mature
ways to meet fiiture needs (Simpson, 1991).

Nursing is the main transforming force that facilitates the growth of the patient
and the nurse. Peplau characterized nursing as a propelling instrument toward
productivity and fulfilled living both personally and within the community. Patient
refers to those individuals, sick or well, that the nurse serves. The nurse is the “medium
of the art of nursing” (F orchuk, 1991, p. 55). Health, the goal of nursing, is the symbol of
productive living. According to the Peplau model growth is inherent in health. This
coincides with the hospice philosophy that emphasizes growth, even at the end of life.
Environment is defined as the context of the relationship, including physical and social
aspects.

The nurse-patient relationship is the core in the Peplau model. The relationship
develops as the nurse and patient spend time together and grows through interlocking and
overlapping phases. These include the phase of orientation where initial trust is
established, the phase of identification (exploring issues), the phase of exploitation
(understanding of patient’s needs), and the phase of resolution (plan for long term care or
death). The roles that are described in the Peplau model are: the nurse as stranger, the

nurse as a resource person, the nurse as a teacher, the nurse as a leader, the nurse as a

14

counselor, and the nurse as a surrogate (Simpson, 1991). These roles coincide with the
characteristics of advanced practice nurses. Runtz (1983) described nursing roles,
utilizing Peplau’s model, as collaborator, educator, counselor and resource person. The
American Academy of Nurse Practitioners (AANP) also lists these as roles of the
advanced practice nurse (AANP, 1993).

“By using nursing roles effectively, the patients are encouraged to participate in
their own care, to help formulate care plans and solve problems. It is through the phases
of interaction that a nurse can identify how dependent a patient is likely to be, and this
helps the nurse to predetermine the support that will be needed at various stages of the
relationship” (Simpson, 1991, p. 20).

The phase of orientation is characterized by two factors, the felt need by the
patient and the seeking of professional assistance (Fowler, 1994). This phase sets the
tone for the following phases. It ensures that the patient understands the purpose and
boundaries of the relationship (Martin, 1990).

The phase of exploitation is the phase in which the patient makes full use of all
the available resources in his environment. In this phase, the relationship is one of
mutual processes. Both the nurse and the patient are planning, establishing means of
implementation of plans, and setting goals. It is a working through the issues, a
cooperative effort based on the dynamic relationship (dependence/interdependence)
(Simpson, 1991).

The nurse-patient relationship is a temporary one. It is service oriented and

therefore has an ending. The resolution phase is known as the letting go phase, the

“freeing process” (Simpson, 1991, p. 13). It is during this phase that a hospice patient

15
can look back over the course of the relationship, understand the growth and development
that has occurred, and move more preparedly toward death.

In implementing Peplau’s model within the environment of hospice care, (1.2 of
Figure 1), “Other Relationships” will be considered family relationships. “Since nurses’
interactions with their patients’ relatives and friends are seen as a central part of their
role, Peplau’s model would not only involve the patient but also important friends and
relatives, and the nursing process relationship would develop with the patient and
relatives” (Fowler, 1994, p.196).

Communication includes nonverbal and verbal exchanges from both participants.
This is the avenue that information is exchanged, understanding occurs, and growth is
promoted. Pattern integration explains or portrays how individuals interact. This
interaction can be complementary, antagonistic, or shifting back and forth. It is
developed over time with each interaction and can be productive or nonproductive for the
patient and the nurse (F orchuk, 1991).

To fiirther explain the roles of the nurse in Peplau’s model, Fowler (1994) states
that the nurse, in role of stranger, must be accepting of patients and treat them as if they
are able strangers until discovered otherwise (Fowler, 1994). The resource nurse brings
expertise and knowledge; the teaching nurse incorporates instruction as an integral part
of all roles; the leader must have previously examined her own leadership style and its
implications to the nurse-patient relationship; the counselor plays a very active role in
ongoing therapeutic interactions; and the surrogate role is a building block (Forchuk,

1991).

16

Thinking is the “process by which experience is incorporated, stored, organized,
and recalled. By way of thought, events that are observed and conceptualized are linked,
revised, and used in other experiences” (F orchuk, 1991, p. 56). This concept includes

preconceptions, and self-understanding. Preconceptions are the thoughts and feelings of
each participant prior to any interaction and self-understanding, to Peplau, is a
requirement for effective nursing practice (F orchuk, 1991). Learning is an active process
utilizing understanding, perceiving, and thinking. It can include the acquisition of new
knowledge, enabling change, and problem-solving. It moves each of us from one step to
another.

Competencies are developed skills that have been used and practiced. According
' to F orchuk (1991), they are categorized as intellectual, interpersonal, and problem
solving.

Anxiety is something that everyone experiences. It is felt when the security of an
individual is threatened. The effects of anxiety can be constructive or destructive,
leading individuals toward or away from productivity. Simpson (1991) implies that in
the care of the patient, it is the central theme when applying Peplau’s theory.

All of the major concepts are interrelated. Participants bring their sphere of self
to the nurse-patient relationship which occurs within the context of the environment. As
with any humanistic model, there are potential difficulties. The nurse must be confident
and competent in her skills for therapeutic support. She must have highly developed
communications skills, educative skills, technical knowledge, and the ability to

understand herself in depth. She must also be able to recognize when to assume the

17
appropriate role. Thus, one limitation to this model could be the nurse herself. In
Peplau’s model, the nurse must have the skills of listening, speaking, questioning, and
reflecting. It goes without saying that not all nurses, advanced practice or not, possess
these skills in completeness.

Another variable or limitation might be the concept of time. A “relationship”
takes time to develop. It is something that evolves over time as the nurse and the patient
work together. In the hospice setting, it is ideal that the team has at least six months with
the patient and family. This, of course, is not always possible. On some occasions, the
time together is just a few weeks or even days. The nurse must be able to make the most
of every minute.

The Peplau model does not specifically address the communication between the
nurse and the organization that employs him/her. The lines of communication must also
extend to co-workers or in the hospice setting, team members. It is essential for the APN
to be able to communicate effectively with all care providers.

Because of the emotional demands that are placed on the nurses, they will need
support. This is ideal for the hospice setting as the team functions as a network of staff
support. Nursing support is especially needed when using humanistic skills within a
model. An advanced practice nurse would be ideal for this support for the primary care
nurse and other team members. The highly developed skills and expertise of the APN

lend themselves to this role.

18

Fowler (1994) sees similarities between Kubler-Ross and Peplau, thus flirther
substantiating the use of Peplau’s model in hospice care. Kubler—Ross has done
extensive writing on the terminally ill and death and dying. In her book, Living With
Death and Dying, (Kubler-Ross, 1981), her dedication is to those who courageously fight
negativity both within themselves and society. The idea of fighting negativity can
be compared to Peplau’s idea that anxiety leads to either “positive grth or negative
regression” (Fowler, 1994, p. 196). Both Kubler-Ross and Peplau believe that the nurse-
patient relationship determines whether the patient’s journey through illness is positive
or negative, (Fowler, 1994).

Peplau’s model lends itself to a means of evaluation, but this means would have
to be developed by the researcher. According to Simpson, feelings are a major tool that
nurses can use to assess patient’s needs, and they can be measured by methods of self-
assessment and self-awareness. He suggests the use of a psychological scale of patient
dependency integrated with a scale of physical dependency. He concludes however that,
the measurement of nursing using an interactional approach, where parameters of care are
ever-changing, is a difficulty which has not yet been overcome (Simpson, 1991). Fowler

(1994) also believes that Peplau’s model gives structure on which to evaluate care.

19

REVIEW OF LITERATURE

The review of the literature exploring the utilization and evaluation of APNs
within the hospice construct revealed that this idea is very new to hospices and has not
been extensively researched and documented.

Hospice

There is an abundance of information available explaining hospice, its
philosophy, structure, services, goals and benefits. The National Hospice Organization,
individual state hospice organizations and agencies, practitioners and researchers have
provided coverage for the depth and breadth of hospice care. Dr. Cassell succinctly states
the need for hospice.

“As sickness progresses towards death, measures to minimize suffering should be
intensified. Dying patients require palliative care of intensity that rivals even that of
curative efforts, even though aggressive curative measures are no longer indicated.
Professionals and families are still called on to use intensive measures, extreme
responsibility, extraordinary sensitivity, and heroic compassion” (Cassell, 1991).

Byock (1997) believes that hospice is a vehicle by which people can die well. He
believes that people who are dying, journey through stages of adjustment, discovery, and
insight as they adapt to changing circumstances in their person and in the ways that
others react to them. He fithher states that “as a dying person reaches developmental
landmarks such as experienced love of self and others, the completion of relationships,

the acceptance of the finality of one’s life, and the achievement of a new sense of self,

despite one’s impending demise, one’s life and the lives of others are enriched” (Byock,

20
1997, p. 33-34). Hospices are becoming increasingly adept at helping the dying work
toward meaningful goals (Byock, 1997).

Beresford (1997) states that hospice, for many facing the unique problems in
coping with a terminal illness, is a compassionate but highly skilled and specialized
response to those specific needs. He further explains what usually happens to patients
after they enroll in a hospice program. The patient and the family are accompanied at
their pace, encouraged to make the most of the time left, motivated to be autonomous,
facilitated in personal grth at the end of life, and assisted in refocusing their energies
toward living the days that remain (Beresford, 1997). People in the midst of the greatest
crisis of their lives are given a specialized kind of hope.

The Standards of Hospice Nursing Practice and Professional Performance from
the Hospice Nurses Association (1995) will also serve as a guide for the development of
the role description. These standards are similar in presentation to the American Nurses
Association Standards (1996). The hospice nursing standards, of course, pertain
specifically to the specialty.

Advanced Practice Nurse Role

There is much written about the advanced practice nursing role since the nurse
practitioner role originated in 1965. Advanced practice nurses have greatly impacted
quality of care, provided cost-effective health care, and have increased accessibility of
services for years. They need support for the increased patient needs in the diverse health

care settings (Sellards & Mills, 1995).

21

The characteristics and competencies of APNs are listed and explained by Davis
& Hughes (1995). The list of characteristics includes: risk-taking, vision, flexibility,
articulateness, inquisitiveness, and leadership ability. APNs have the capacity to be self-
directed, to adapt theory to practice implementation, to develop new theories from their
knowledge and experience, and to provide new learning for the public (Davis & Hughes,
1995). The defined competencies (which fit with Peplau’s theory) are listed as: “clinical
expertise, critical thinking and analytical skills, clinical problem solving, collaboration,
education and research, and program development” (Davis & Hughes, 1995, p. 158-159).

A case for the nurse practitioner movement gaining momentum is that APNs can
be found in many clinical and geographic areas, including rural areas and inner cities and
that they deliver high quality care to people of all ages (Davis, 1994). Davis (1994)
continues to explain that the role blends both medical and nursing components, and
in rural settings, APNs can provide care autonomously, without immediate assistance.
Sullivan (1992) asserts that despite much research evidence supporting APN’s efficacy,
cost-effectiveness, and value in providing quality primary health care services, APNs are
underutilized and if payment for services are not reimbursed comparable with physicians,
serious financial disincentives would occur.

The American Academy of Nurse Practitioners (1993) provides a comprehensive
outline for the APN standards and scope of practice. They define the APN role as
primary nursing and medical providers for individuals, families and groups. APN
services of teaching, counseling, diagnosis and management of disease processes,

diagnostic and laboratory testing, health promotion and disease prevention along with

22

prescription of pharmacologics and therapies, are done autonomously or in collaboration
with other health care providers. APNs are interdisciplinary consultants, patient
advocates, and health care resources. The American Nurses Association has published
the Scope and Standards of Advanced Practice Registered Nursing (1996) which will
also guide the role description development. It is the guide for all roles of advanced
practice nursing.

The managed care environment offers another unique role for the APNs.
Madden & Ponte (1994) offer some thoughts on the APN in the managed care
environment.

“The role of the advanced practice nurse is based on expert clinical knowledge
and skill and is practiced in multiple settings. They deliver care, manage patients and
families, teach, consult, research, and do a range of other activities based on the needs of
patients and the environment in which they practice. . . generally in an area that requires
technical sophistication, in-depth knowledge, or complex decision-making. . .(they) will
continue to be the lifeblood of the managed care organization and an asset that we cannot
do without (Madden & Ponte, 1994, p. 56, 62).

Madden & Ponte (1994) feel that APNs are leaders in the following areas:
reducing costs and enhancing quality of care by their impact on patient outcomes,
providing new knowledge through research, and applying nursing research to nursing
practice. Managing complicated patients and families, teaching, coaching and mentoring
other nurses, impacting ethical decisions with their in-depth knowledge of clinical

practice, and applying systems and financial knowledge to patient care decisions and

nursing practice are other areas where APNs excel (Madden & Ponte, 1994).

23
Advanced Practice Nurse Within Hospice

Two correspondences received in the literature search stated that little information
is available about the role of APNs in hospice (L. Powell & B. Mulich, personal
communication, February 18, 1997). It has been suggested that the federal regulations
surrounding hospice are in part responsible for this lack of literature (S. Solomon,
personal communication, March 7,1997). APNs and hospice agencies are not finding
reimbursement for the practice. Another factor could be the apparent lack of APNs who
are interested in working in the hospice and palliative care field. However, since the
movement of patient care out of acute care into home care, more and more APNs are
likely to become involved.

Ebersole & Enloe (1983) present a case for the utilization of geriatric nurse
practitioners (GNPs). This would apply to hospice because the greater percentage of
hospice patients are elderly.

“Considering that ninety percent of the population we serve is over sixty-five
years old, we recognize the need for the additional geriatric expertise and the improved
assessment skills of a geriatric nurse practitioner. We expect a GNP will facilitate better
case management, more timely and sophisticated interventions, and upgrade all our
nurses’ awareness of the special aspects of aging”(Ebersole & Enloe, 1983, p. 48)

A certified family nurse practitioner in an Oklahoma hospice sees her
responsibilities as a primary nurse, consultant, case manager, and coordinator for staff

development, and provider of in—services for nursing homes and hospitals regarding

hospice (Eckhart, 1988). A 1993 and a 1996 hospice job description for a nurse

24
practitioner listed the purpose or role as utilizing clinical expertise, expert knowledge,
and diagnostic judgement to provide education, research, and consultation and to develop
inpatient professional practice (Hospice of Michigan, 1993, 1996).

Another hospice, Dover House, has challenged the conventional roles in palliative
care by implementing nurse practitioners into their structure. Their objectives were to
provide their patients with more immediate access to care, provide increased continuity
of care, and to unburden physicians. They developed protocols and identified five key
areas for role development: remaining up-to-date with pain and symptom management,
teaching others about pain and symptom management, researching palliative care issues,
assuming a central clinical role by taking on extra responsibilities (guarded by protocols),
and developing and maintaining a liaison role to link outside groups and hospice (Scott,
1995). Some advantages that this group enjoyed were the ability to expediently readmit
patients to their unit, quick and easy access to the APN for pain and symptom
management orders that enabled team members to be proactive rather than reactive,
improved continuity of care and screening for potential problems, earlier access to blood
test results and the elimination of delayed medical call backs. The staff benefited from
the APN’s presence by the reassurance of consultation, suggestions for patient care,
teaching aids, and staff development (Scott, 1995).

APNs are viewed as underutilized but ideal practitioners for home care and
hospice settings because of their outstanding assessment and interactional skills. They

can coordinate the care of the dying patient, and can assist the family through the

25
grieving process (Solheim, et al, 1995). Home visits by the APN facilitate access to care
for this particular population.

Weggel (1997) presented an extensive work on the role of the APNs in palliative
care. This author presents evidence for the creation of a role of advanced practice nurse
in palliative care. “The terminally ill are a specialized patient population that
increasingly needs the expanded skills and knowledge of advanced practice nurses”
(Weggel, 1997, p. 43). The APN’s leadership skills, in-depth knowledge base, problem-
solving abilities, and capability to negotiate in a complex integrated health care network
uniquely qualifies the APN for the expanded role in comfort care. Further, the APNs can
use their knowledge and skills in teaching and interaction. They can use their clinical
competence and decision-making abilities to make decisions based on a holistic
viewpoint. This makes significant contributions to palliative care (Weggel, 1997).

Weggel (1997) also contends that the studies that she has reviewed indicate that
APNs have decreased costs and have improved the quality of care for the hospice
clientele and states, “it is logical to assume that APNs could provide and oversee the
provision of quality palliative care to patients, coordinate their care between home,
hospital, clinic, or nursing home, and do so in a cost-effective way” (Weggel, 1997, p.
49).

Further evidence for the use of APNs in palliative care was substantiated by Rich,
Beckman, Wittenberg, Leven, Freedland, & Carney (1995). These researchers found that

a multi-disciplinary team, directed by a nurse, provided education, consultation, and

26
follow-up, for elderly patients with congestive heart failure and was able to reduce
hospital usage and medical costs and improve the quality of life for this group (Rich ct
al,l995)

METHODOLOGY

The purpose of this project is to develop a role description for utilizing APNs
within the hospice construct and to suggest a means by which the effectiveness of the role
description can be measured or evaluated. The role description will evolve from the
review of current literature, the standards of practice for APNs and hospice nurses, and
from information hospice organizations have provided that currently employ APNs.
Aspects of Peplau’s developmental theory will guide the pivotal concepts used in the
develOpment of the role description.

One of the first steps would be to define the roles and responsibilities, outline the
qualifications, and then describe the functions and services of the APN within the hospice
construct. Peplau’s major concepts and their inter-relationships will guide this outline.
Flexibility will be key in allowing individual hospice agencies the ability to implement
the role description. The role description will incorporate the Scope and Standards of
Advanced Practice Registered Nursing from the American Nurses Association (1996),
and the role characteristics of an advanced practice nurse, the Scope of Hospice Nursing
Practice and Professional Performance from the Hospice Nursing Association, and the
Scope of
Practice for Nurse Practitioners from the American Academy of Nurse Practitioners

(1993)

27

PROCEDURE FOR MPLEMENTING SERVICES

The implementation of the following role description could occur within any
hospice organization. It will allow enough flexibility for adaptation to any setting. The
development of the role description will be guided by the previously referenced works of
Peplau, the Scope and Standards of Practice Registered Nursing (1996), the Scope and
Practice for Nurse Practitioners (1993), and the Scope of Hospice Nursing Practice and
Professional Performance (1995).

The advanced practice nurse in this role description could a part of the
organizational chart or be an independent contractor to the hospice agency and work in
collaboration with the medical director. The APN would then be evaluated by the
medical director, the patients/families, and peers.

Role Description

Job Title: Advanced Practice Nurse Within Hospice

General Summary: The Advanced Practice Nurse within hospice is a registered
professional nurse prepared in a formal graduate educational nursing program. The
practice builds on: (a) previous knowledge and skill in utilizing the nursing process, (b)
knowledge of hospice philosophy and functioning, and (c) encompasses the roles, scope,
and standards of both hospice and advanced practice nursing. The APN possesses the
following characteristics: leadership, vision, inquisitiveness, flexibility, risk-taking, and
articulateness. The roles of patient advocate, consultant, and resource person will be

emphasized.

28

Qualifications:

1.

The APN must have a current state registered nursing license in the resident state,
(Michigan), have completed a graduate program for advanced practice nurses, and
hold a clinical certification in a specialty field.

The APN must possess clinical expertise in all aspects of palliative care
and hospice nursing concepts and principles, and must be able to apply
concepts and principles from the behavioral and biological sciences.

The APN must demonstrate proficiency in pain management.

The APN must have worked for a least two years as an advanced practice,

one year in palliative care.

The APN must be able to demonstrate competencies in the following areas:

critical thinking, analytic skills, clinical problem solving, and organ-

izational skills.

The APN must have the verbal, written, and interpersonal communication

skills to easily develop a nurse-patient relationship.

The APN must maintain continuing education programs as outlined by the state

and organizational guidelines.

Roles and Responsibilities:

1.

2.

3.

Act as patient advocate for hospice patients.
Be a consultant for peers, the community, and other'health care agencies.

Assume liaison role between hospice and all other health care providers.

IO.

11.

12.

29

Be an identified resource person for all questions regarding palliative care.
Collaborate with physicians and others on the health care team.

Assume responsibilities for education of co-workers and the community regarding
palliative care.

Conduct research as applicable to current practice.

Assume responsibility for a part in program development as mentor and/or
administrator of specific aspects of the agency.

Participate in the evaluation process for care delivery (health care outcomes),
patient and family satisfaction and cost effectiveness.

Advance the role of nursing and the APN while assuring that the standards of the
nursing profession are maintained.

Maintain contact with professional organizations and involvement in health care
on the local, state, and national levels.
Adhere to all established nursing and hospice standards, procedures, and
guidelines.
Maintain confidentiality regarding health information other than conditions that

are required to be reported by law.

Functions and Services:

1.

Performs admission history and physical examinations and assessments,

b)

10.

ll.

30
periodic and on-going re-assessments, and acts as consultant for other
nurses who are doing exams.
Utilizes the nursing process by forming nursing diagnoses, intervention and
treatment plans, prioritizing needs, establishing goals, and monitoring and
evaluating care progression.
Writes prescriptions, administers, and adjusts dosages of medications within
guidelines of organizational protocols or in collaboration with physicians.
Orders diagnostic tests, interperts and evaluates results, and adjusts treatment
plans as necessary. Collaborates with physician as needed with diagnostic
testing.
Secures referrals for organization by explaining hospice to patients and families
and developing a care management plan with them and their physician.
Makes home visits as necessary for continuity of care and follow-up monitoring.
Presents seminars or in-services about hospice to the community agencies, service
programs, and other health providers.
Performs all necessary clinical procedures according to standards and guidelines.
Regularly consults with organizational nurses regarding patients’ and families’
needs and challenges and provides them with information and education.
Conducts research projects, disseminates and integrates findings.
Facilitates change through written protocols utilizing research findings.
Mentors nursing students and acts as role model to all nurses to promote

nursing and especially palliative care nursing.

13.

14.

15.

16.

17.

31

Participates in organizational committees and policy-making processes.

Assumes partial responsibility for the implementation, maintenance, revision, and
evaluation of such.

Facilitates positive relationships with patients, families and co-workers
understanding individual uniqueness and the phases of a working relationship.
Develops methods to evaluate the effectiveness of interventions or programs
based on desired outcomes and objectives.

Maintains and reviews medical records for compliance with organizational and

state regulations.

Srnrervision: Guided by organizational chart.

Working Relationships:

Internal: On—going contact with organizational employees in all departments.
External: On-going contact with referral sources, community members, health

care providers and facilities.

EVALUATION OF SERVICES

The advanced practice nurse should be evaluated yearly on the performance

within the role description and on specific nurse sensitive outcomes related to patient

care, for example, patient/family satisfaction with APN performance/services. This

evaluation would include not only the personal attributes of the APN but the overall

effectiveness and value of the fulfillment of the expectations involved in the components

of the role description.

32

The APN roles of collaborator, educator, resource person, and counselor, can be
evaluated by using Peplau’s model. This is accomplished by evaluating the mutual goals
in relationship to expectations, time limits, success/failure of interventions (Runtz &
Urtel, 1983). “According to Peplau’s model the goal of action is the forward movement
of personality and other ongoing human processes in the direction of creative,
constructive, productive personal and community living” (Runtz & Urtel, 1983, p. 38).
The ultimate goal is the transformation from anxiety to resolution or acceptance. If this
has occurred for the patient and family, some success of the nurse-patient relationship has
been accomplished. Identifiable sources of difficulty might be a conflict of goals
between APN and patient and family, frustration on either part, or unmet needs. This is
not to say that there are not varying stages of success and that all sources of difficulty can
be overcome. But the general feeling of success/failure is definitely measurable.

The importance and the appropriateness of the APN roles as well as the role
description itself would be potential aspects to evaluated. As APNs expand into hospice
and palliative care and their roles expand, more opportunity for evaluation will exist.

Patient satisfaction is currently being measured by many health care agencies,
including hospices. Anyone of these measurement tools, such as the Edmonton Symptom
Assessment System (ESAS) (Bruera, et al, 1991) or the Missoula —Vitas (Byock &
Merriman, 1994) would offer insight into the success of the APN practice. However, the
outcome measurements must relate to the roles, responsibilities, functions, and services
as outlined above. Besides patient satisfaction, cost effectiveness and pain and symptom

management (all nurse sensitive outcomes) could be measured and evaluated. A hospice

33
in Michigan is currently measuring pain relief and will be evaluating patient satisfaction
in the areas of dyspnea and nausea relief.

Hospices themselves are developing and utilizing evaluation tools that are adding
much needed information to the overall nursing database. One challenge is the
appropriate documentation tools to record the interventions that are implemented. If
nurses find it too difficult or time consuming to record their findings or interventions,
they probably won’t record them.

Performance evaluations or reviews done by supervisors and peers can be an
effective means of evaluation of an APN. If the peers are satisfied with the services and
feel that the APN is contributing to their quality of care and/or personal growth, then the
APN is being effective in the described role.

The APN’s clinical competencies could be evaluated by using the measurement
criteria that the American Nurses Association presents in their publication, the Scope and
Standards of Advanced Practice Registered Nursing, and the criteria that the Hospice
Nurses Association present in their written scope and standards. These criteria are
specific and objectively measurable criteria.

One hospice, Hospice of Michigan, is tracking pain levels on admission, pain
levels after twenty-four hours and pain levels after forty-eight hours. The next step will
be to record and identity specific interventions to see which has been most effective in
reducing pain (M. L. Huber, personal communication, May, 1997).

The impact of evaluation of services on nursing is great and far-reaching. It

reaches into the realm of funding for programs as well as APN positions and

34
reimbursement level. If the role is scientifically proven to be effective in patient and
family satisfaction, pain and symptom control and cost-effectiveness, the APNs’ place in

the health care team is solidified.

IIVIPLICATIONS FOR ADVANCED PRACTICE

The introduction of advanced practice nurses into the hospice setting is relatively
novel and challenging. This venture will expand the utilization and scope of practice for
APNs and will provide leadership in research and practice in palliative care. It will
enhance the body of knowledge and the practice of all nurses.

Since APNs’ roles and responsibilities include that of educator, mentor, and
change agent, practicing in hospice would provide ample opportunity to fulfill these roles
and responsibilities. The APN would have the opportunity to educate peers, community
members and agencies, and other health care providers regarding hospice philosophy,
goals, and services. The APN would then be a change agent because fewer dying persons
would die in pain and more would be allowed to die in comfort, peace, and dignity
surrounded by those they love.

As patient advocates and counselors, the APNs would direct efforts towards
patient self-actualization, promoting a meaningful completion of life. Patients and
families would have the opportunity, knowledge, and tools they needed to make a
comfortable transition from firtile aggressive interventions to comfort care.

As clinicians, APNs would play key roles in the assessment of the patient’s

response to a particular disease process, diagnosing the patient status, developing and

35
implementing treatment plans, and evaluating the care that is provided. It is within the
clinical scope of APNs to manage and direct the care of this population.

Other implications of the APNs in hospice care would be that of collaborators,
coordinators, and consultants. They would be an essential link between the community,
health care facilities, community and health services, physicians, and funding agencies.
There is much work to be done on this level. As previously discussed, the dying have
special needs and challenges and only a small percent of the dying are now served by
hospices (Lubash & Dunn, 1996).

The benefits of APNs within hospice are far—reaching. APNs are an untapped
resource. Care providers, patients and families, and the entire health care system would

all benefit from APNs in this capacity.

IMPLICATION FOR EDUCATION

The implications for education are many. First, there is an opportunity to educate
nurses and health care providers at all levels regarding end of life care. The expansion of
APNs into hospice provides ample avenues for knowledge expansion. APNs can
participate in many educational opportunities such as providing in—services, workshops,
seminars, or lectures on end of life care to fellow health care providers.

There is also the opportunity for APNs to educate the public. One of life’s

greatest challenges is getting the word out to people regarding their choices, the

36
implications of their choices, their rights, and the availability of services. The health care
system is continually changing and the challenges of keeping up can be overwhelming,
especially to the terminally ill population.

Another area of education implication would be in APNs’ education itself. It is
now important that palliative care be a part of the APNs’ curriculum. By introducing
them to palliative care and teaching them the existing knowledge, they in turn can expand
that knowledge base and share with others.

The governing bodies whose power and influence regulate the delivery of health
care are also in need of education on palliative care. Only by sharing with them the data
gathered in actual cases can they understand the needs and challenges of the terminally
ill. APNs are capable of gathering and disclosing numbers, statistics, and new
knowledge. This gathering and sharing can only benefit all as it adds to our body of

knowledge and understanding of a unique group of people.

IIVIPLICATION S FOR RESEARCH

Hospice nursing research is growing and evolving, but since hospice began in the
United States in 1974, it is a relatively new concept. It is also a concept that changes
with legislation, funding, societal moods, and health care changes. There is much to
learn from the terminally ill as seen in Dr. Ira Byock’s book, Dying Well. Published this
year, Dr. Byock writings offers a refreshing and insightful glimpse into the lives of

people facing death. In each instance, the people he writes about have taught those

37
caring for them a great deal about life, humanity, individual uniqueness, and death and
dying.

There is ongoing research on specific topics such as pain control, patient and
family satisfaction, caregiver stress, and cost-effectiveness. The Missoula-Vitas Quality
of Life Index and the Edmonton Symptom Assessment System (Byock 1994 & Bruer, et
a1, 1991) are examples of such research. There are many more opportunities that await
us, such as successful symptom management for nausea and dyspnea. APNs in hospice
are ideally equipped and positioned to conduct research to add to the body of knowledge
surrounding end of life care.

Conway-Welch (1996) states, “our research efforts, which continue to be directed
at clinical problems, need to embrace health services research in outcome-focused areas,
including quality of patient care, population-based care management, and cost
effectiveness” (Conway-Welch, 1996, p. 290). Outcomes are the focus of much of
health care today. We must all assist in providing hard evidence that APNs can and do
make a difference in the health care arena.

The establishment of the APN role with the hospice construct is challenging.
Conducting research on that role will also present its own obstacles (L. Selandars,

personal communication, August 18, 1997).

CONCLUSION

The development of a role description for advanced practice nurses in hospice is

only a small contribution to the field. It is however, worthy of consideration because of

38
the newness of the concept and the implications for the promotion of well being and
comfort of mankind. We all face death. It is a fact no one will escape. It is important to
explore all possibilities in working toward a death with comfort, peace, and dignity.
Hospice is a viable alternative to many other health care choices. Hospice works. It
works in controlling pain and symptoms, resolving family conflicts, dying peacefully,
and in dealing with grief. Advanced practice nurses can and will make a tremendous
impact in this field.

Peplau’s conceptual framework was beneficial in the development of the role
description as it offered ideas of nursing as an educational interactive avenue that
promotes the development of constructive relationships which enables both patient,
family and nurse to bring their uniqueness and perceptions together to work towards
mutual goals. The nurse offers her skills, knowledge, and expertise while the patient and
family offers themselves and their goals. Communication is the key to all of life and so it
is in the nurse-patient relationship. The APN’s skill in communicating acceptance and
knowledge to others is of great impact and importance.

Hospice and palliative care offers a tremendously challenging platform for APNs.

Are advanced practice nurses up to the challenge?

REFERENCE LIST

REFERENCE LIST

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Beresford, L. (1997). Is hospice too depressing? Hospice Manager ’5
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