Journal of Gerontological Nursing

THE EVOLUTION OF Hospice in America: Nursing's Role in the Movement

Rosemary L Hoffmann, RN, MSN

Abstract

ABSTRACT

In the current society, many individuals fear death and the feelings of suffering and loneliness that often accompany death. Two visionaries in the United States, Florence WaId and Dr. Elisabeth Kubler-Ross, recognized these fears and planned the nation's first hospice movement in the 1970s. The hospice philosophy continues to prosper in the new millennium. In this article, the founding American hospice's philosophy, types of facilities, standards, health team composition, patient demographics, organizations, reimbursement, and research are compared and contrasted with those of the current hospice movement. Existing issues with the modern movement are also discussed.

Abstract

ABSTRACT

In the current society, many individuals fear death and the feelings of suffering and loneliness that often accompany death. Two visionaries in the United States, Florence WaId and Dr. Elisabeth Kubler-Ross, recognized these fears and planned the nation's first hospice movement in the 1970s. The hospice philosophy continues to prosper in the new millennium. In this article, the founding American hospice's philosophy, types of facilities, standards, health team composition, patient demographics, organizations, reimbursement, and research are compared and contrasted with those of the current hospice movement. Existing issues with the modern movement are also discussed.

Death, the culminating event in life's trajectory, often is feared. Some of these fears include (Thorson & Powell, 1996):

* Suffocating.

* Feeling alone.

* Losing control.

* Leaving loved ones behind.

* Entering an unknown place.

* Fear of physical pain or suffering.

Even the word death is usually not spoken openly, but referred to as "passing away" or simply "departed." The inability of health care workers and lay people to talk openly about death became one of the underlying principles behind the hospice movement.

Nursing care for the dying was advanced by the pioneering effort of Dr. Cicely Saunders in the second half of the 20th century. The hospice movement flourished under her leadership, beginning with the opening of St. Christopher's Hospice in 1967 in London, England. Dr. Saunders charted new directions in both philosophy and techniques when treating individuals with terminal illnesses. Dr. Saunders stated:

The name hospice, 'resting place for travelers or pilgrims,' was chosen because this will be something between a hospital and a home, with the skills of one and the hospitality, warmth, and time of the other (Neigh, n.d.).

Dr. Saunders emphasized three important components of hospice care (Torrens, 1985):

* Research.

* Education.

* Superb patient care with emphasis on the relief of all types of pain - physical, emotional, spiritual, and social.

The hospice movement spread internationally, coming to the United States in the 1970s. Although many hospice models exist, the basic philosophy of caring, compassion, and comfort remain constant. Nursing is a pivotal component of the interdisciplinary hospice team. Nursing's importance is evident in the mission statement, goals, and objections of the original hospice, St. Christopher's, as well as research and strategic management of present hospice models.

In this article, the early hospice movement in the United States, which began with two visionaries - Dean Florence WaId and Dr. Elisabeth Kubler-Ross - is briefly described. The founding American hospice is then compared and contrasted with the modern hospice movement in terms of philosophy, types of facilities, standards, health team composition, patient demographics, organizations, reimbursement, and research. Issues with the current modern hospice movement are also discussed.

THE FOUNDING AMERICAN HOSPICE

The hospice movement in the United States began to evolve in the mid 1960s. Several students, under the leadership of Dean WaId from Yale University School of Nursing, heard of the remarkable progress Dr. Saunders and her colleagues had made with the care of patients dying in England. In 1965, they invited Dr. Saunders to speak at Yale School of Nursing. During this same time period, Dr. Kubler-Ross (1964) published her classic book, On Death and Dying, which launched new concepts related to care of patients who were dying. Both of these new philosophies contrasted with the American dream of youth, vigor, and science. Kubler-Ross testified on behalf of the hundreds of dying patients she interviewed for her book that treatment at the end of life should remain the patient's preference. Alternatives to institutionalization are paramount, and more important, choices for the care received must be offered. Speaking before a U.S. Senate Special Committee on Aging in 1972, Kubler-Ross stated:

We isolate both the dying and the old, and it serves a purpose. They are reminders of our own mortality. We should not institutionalize people. We can give families more help with home care and visiting nurses, giving the families and the patients the spiritual, emotional, and financial help to facilitate the final care at home (Neigh, n.d.).

Initial funding from the National Cancer Institute (NCI) provided the monetary incentive to open the New Haven Hospice in 1974 (Neigh, n.d.). This hospice, under the direction of Dr. Sylvia Lack from St. Christopher's in England, served patients in the home (Campbell, 1986). The success of this initial hospice prompted the U.S. Department of Health, Education, and Welfare to report that:

the hospice movement as a concept for the care of the terminally ill and their families is a viable concept and one which holds out a means of providing more humane care for Americans dying of terminal illness while possibly reducing costs (Neigh, n.d.).

Demonstration projects through the Health Care Financing Administration and foundation grants further supported the hospice concept (Paradis & Cummings, 1986). As a result, the Connecticut Hospice opened a 44-bed inpatient unit in 1980 (Paradis & Cummings, 1986). Conferences sored by the Connecticut Hospice, The Hospice of Marìn in California, and the Palliative Care Services of the Royal Victoria Hospital began to offer seminars on developing hospice models (Torrens, 1985). As a result of these initiatives, additional hospice facilities began to open in the United States.

SIMILARITIES AND DIFFERENCES BETWEEN THE 1970 AND 2004 HOSPICE MOVEMENTS

As a result of the grassroots movement in Connecticut, the hospice movement continues to exist in the 21st century. Through continued support for alternative end- of - life care, some principles have changed or flourished, but many early concepts remain intact. A timeline outlining important events in America's hospice movement is shown in the Table.

Philosophy

Hospice produced a paradigm change in the delivery of care from a "cure" model to a "comfort" model, by treating the patient and family as a unit. This allowed the terminally ill patient to live life with the fullest of quality until death (Stoddard, 1978). Thus, early pioneers in hospice care emphasized the humanistic and holistic approach to patient care (Paradis & Cummings, 1986).

One of the maj or goals that originated at St. Christopher's and is shared with hospices in America is the objective of keeping the patient pain-free, comfortable, and without diminished sensorium during the final stages of life (Campbell, 1986). This goal is achieved by a combination of art and science researched by Saunders (1978) and practiced throughout the world. Saunders believed pain was physical, psychological, social, spiritual, or any combination of these factors. Therefore, it is important that all members of the health team actively participate in pain management. Optimal dosages of medications and knowledge that the patient's needs may change rapidly necessitates frequent readjustment of medication (Campbell, 1986). Pain relief is a common objective for both European and American hospices, although the types of pain medication used differs. This is evident in the differing administration of opiods, psychotropic agents, sedatives, cortiosteroids, or non-steroidal anti-inflammatory agents (Saunders & Baines, 1989). For example, heroin, available in England and commonly used to treat pain in cancer patients, is not legally available in the United States (Hospice Net, n.d.).

The philosophy of hospice care encompasses far more than pain control. Additional components of hospice care that originated in England and are evident in America include (Dubois, 1980):

* Extensive use of volunteers.

* Bereavement follow-up care.

* Expert, multidïsciplinary management.

* Recognition of the patient and family as a unit.

* 24-hour availability of medical and nursing staff.

* Continuity of care, including homecare and outpatient programs.

The Ten Principles of Hospice Care established by the Connecticut Hospice in 1974 are still followed (Sidebar).

Types of Hospice Facilities

Funds from the NCI for the Connecticut Hospice not only provided the opportunity to test the efficacy of hospice for both terminal and non-terminal care, but also to determine its cost effectiveness (Paradis & Cummings, 1986). Therefore, the Connecticut Hospice opened as a freestanding, non-profit institution that provided services in the home through visiting nurses and volunteers (Paradis & Cummings, 1986). The decision to provide services in the home developed as a response to a federal Request for Proposal (Paradis & Cummings, 1986). As a result of positive effects from this initial NCI grant, two additional Requests for Proposal funded three other hospice projects in Arizona, California, and New Jersey (Paradis & Cummings, 1986).

Various hospice models have flourished since the first hospice opened in 1974. One example includes the community-based model, with primary locations in either freestanding units or offices (Campbell, 1986). Many of these models have contracts through local hospitals to provide beds to dying patients. Hospitalbased models provide multidisciplinary consultation, and staff members visit patients throughout the hospital. Institutional-based hospice models contain a discrete unit within an acute-care facility (Campbell, 1986). In the institutional-based model, home care may be contracted through local professional nursing agencies (Campbell, 1986). According to the National Hospice and Palliative Care Organization (NHPCO) (2004), 67% of hospices were non-profit, 29% were for profit, and 4% were operated by the U.S. government. The NHPCO estimates that hospice programs exist throughout the United States and number more than 3,300 (NHPCO, 2004).

Standards

One of the early problems inherit in any new program is the lack of standards and accreditation agencies. This was true of the first hospice models. As a result of continued growth and expansion in the field, it became necessary to explore ways to establish and maintain high standards of care. The development of third-party reimbursement programs further emphasized the need to develop standards of care for all hospice models.

NHPCO has developed recommended standards entitled "Standards of Practice for Hospice Programs" as a means to self and field evaluation (NHPCO, 2004). Hospice organizations are typically accredited by one of the following independent not-for-profit accreditation organizations (Levi, 2003):

* Accreditation Commission of Health Care.

* Community Health Accreditation Program.

* Joint Commission on Accreditation of Health Care Organizations.

Also, hospice programs are certified voluntarily by Medicare. NHPCO (2004) estimated that in 2003, 94% of hospices were Medicare certified and 64% were accredited.

Health Team Composition

The staff composition in many early hospice models comprised community volunteers and health care providers (Paradis & Cummings, 1986). The community leaders shared a strong sense of community involvement and mission (Dubois, 1980). The health care providers included nurses, physicians, and social workers committed to providing quality health care to individuals who were dying.

This staff composition still exists. Staff members realize cure is not possible and the desire to provide alternative methods of comfort to the dying must be granted. Examples of the interdisciplinary health care team include:

* Clergy.

* Physicians.

* Secretaries.

* Pharmacists.

* Social workers.

* Music therapists.

* Physical therapist.

* Certified home aids.

* Nurses.

To receive Medicare reimbursement, hospice models are mandated to maintain a volunteer staff comprising at least 5% of the total patient care hours of all paid employees (Colburn & Hiveley, 1993). Some of volunteers' duties include help with everyday tasks, such as shopping, and personal care services, such as bathing and dressing (U.S. Department of Health and Human Services, 2002).

Nursing is still the primary source of professional services in more than 90% of hospices surveyed (Buckingham & Lupu, 1982). Some requirements for employment in the early Connecticut Hospice included a strong foundation in basic nursing skills, experience in gerontology or oncology, flexibility, and possession of strong psychodynamic and crisis intervention skills (Dubois, 1980). Nurses chosen for early hospices saw their role as threefold (Dubois, 1980):

* Supplying pain and symptom management.

* Providing emotional support to the patient and family.

* Teaching the family basic nursing skills, such as medication administration and rehabilitative exercises.

The goal of nurses was to be available to the patient and family whenever services were most needed (Dubois, 1980).

Many of these qualities are still practiced by hospice nurses in the 21st century including:

* Nurturing.

* Physical care.

* Spiritual concerns.

* Advocacy and teaching.

Hospice nurses work interdependently with other members of the team. However, they function independently when patients' physical symptoms must be assessed and when interventions, including pain management, must be implemented quickly. Nurses must have the knowledge and skills to modify the plan of care when disease progression ensues. Connor (1998) identified several attributes of a hospice nurse including:

* Ability to counsel, manage, instruct, care, and communicate.

* Ability to coordinate the extended and expanded components of hospice services.

* Capacity to manage physical, psychological, social, and spiritual problems of individuals who are dying and their families.

* Ability to balance one's selfcare needs with the complexities and intensities of repeated encounters with death.

Certification in a profession is a mechanism that guarantees the public a higher level of quality care. In 1993, the National Board for Certification of Hospice and Palliative Nurses (NBCHPN) was incorporated to fulfill this goal. This board is affiliated with the Hospice and Palliative Nurses Association. The purpose of this association is to promote delivery of comprehensive palliative nursing care through the certification of qualified hospice and palliative nurses. Certification of qualified hospice and palliative nurses is recognized in individuals who meet the eligibility requirements for certification, practice continued education and personal growth in end-of-life nursing care, and follow national standards of requisite knowledge in the assessment of hospice and palliative nurses (NBCHPN, 2005). According to the NBCHPN, there are currently approximately 6,000 RN certified hospice and palliative care nurses (NBCHPN, 2005).

Patient Demographics

Typically, the average hospice patient was an elderly individual who was terminally ill with a diagnosis of cancer. The definition of "terminally ill" is any individual with a medical prognosis in which life expectancy is 6 months or less (Hoyer, 1998).

Modern hospice models serve a variety of patients. Similar to the first hospice patient cared for by nurses through the Connecticut Hospice, many patients admitted to an American hospice have a diagnosis of cancer. A growing number of patients with chronic life-threatening illness, such as end-stage heart and lung disease, AIDS/HIV, or dementia, also receive hospice services (NHPCO, 2004). Finally, increasing statistics show that a small, but growing, percentage of young children and adolescents need hospice services.

Estimates from NHPCO show that more than 950,000 patients received hospice care in 2003. This represents approximately 25% of all Americans who died that year (NHPCO, 2004). Thirty-seven percent of those served under hospice died less than 1 week after admission. The median length of stay was 22 days (NHPCO, 2004). This represents many short, interrupted hospice admissions, increasing the stress for many caregivers. Similar to past decades, the majority of Americans still spend the last days of their lives in acute care settings deprived of family and familiar surroundings.

The Medicare Act formulated basic admission criteria for tients, although individual hospice programs may elect to modify their criteria. Basically, the criteria are (Sheehan & Forman, 1996):

* The individual is diagnosed as terminally ill.

* The individual wants hospice care.

* The physician is willing to provide medical care and consultation.

Family members, attending physicians, and patients must be in agreement that non-curative medical and support services for a terminal illness is the appropriate choice (U.S. Department of Health & Human Services, 2002). Some hospice programs may require a primary caregiver, do-not-resuscitate orders, and a safe and conducive environment for care (Sheehan & Forman, 1996).

Organizations

The largest non-profit organization established to represent hospice and palliative care professionals and programs is the NHPCO. Established in 1978 as the National Hospice Organization, the name was changed in 2000 to reflect the range of care and services both hospice and palliative care provide. It has become the premier advocate for terminally ill patients and their families (NHPCO, 2002). Some of the objectives of this organization include developing public and professional educational programs to enhance understanding of hospice and palliative care, establishing conferences on emerging issues, conducting research, and monitoring Congressional and regulatory activities (NHPCO, 2002).

One example of fragmentation within the hospice community is the development of additional hospice organizations. In 1988, the American Academy of Hospice and Palliative Medicine was organized. Additional states, including California, Oregon, and Arkansas, have their own hospice organizations. Furthermore, international hospice organizations are located in the United Kingdom, Australia, and other parts of Europe.

Reimbursement and Revenue Generating

Contrary to England's National Health Service, reimbursement is often difficult in the United States. The first hospice program was a non-profit model. Patients were selected regardless of ability to pay for services. There were no thirdparty reimbursements for hospice services until 1982, when Congress created the Medicare Hospice Benefit clause. Hospice participation in Medicare is reimbursed under Medicare Part A (hospital insurance). To be eligible for this benefit, beneficiaries must be entitled to Medicare Part A and be certified by their medical doctor and the hospice medical director as having a terminal condition with a prognosis of 6 months or less to live if the illness were to run its natural course (U.S. Department of Health and Human Services, 2002). Results from NHPCO showed that 79% of hospice patients were covered by Medicare, 13% had private insurance, 5% had Medicaid, 1% were indigent, and 3% had other payment plans. These payment sources include workers' compensation, home health benefits, or donations (NHPCO, 2002).

Even though the majority of hospice patients have Medicare coverage, many hospices still rely on service organizations, philanthropies, and private contributions to balance expenditures. Some hospices report up to 12% of income from charitable contributions (NHPCO, 2002). Some of the services not fully covered by Medicare include treatment to cure the terminal illness, another provider administering the same care received from hospice, and room and board if hospice care is delivered in the home (U.S. Department of Health and Human Services, 2002). Counseling may be reimbursed through traditional coverage by third-party payers under the provision of mental health, but only by physicians, social workers, clinical psychologists, or psychiatric nurses (Campbell, 1986).

Research

Nursing has been at the forefront of hospice care research. One of the primary goals of this research is to develop a scientifie basis of practice. As Sheehan and Forman (1996) state, nursing research involving hospice care is based on the following four goals:

* Seek improvements in care settings.

* Find means to quantify or describe hospice care.

* Discover new techniques for care of individuals who are dying.

* Problem-solve in philosophical approaches to understand suffering, grief, and transference from life to death.

Beginning in the 1960s, Florence WaId and others produced a study that included diaries of dying patients and their caregivers (WaId, 1999). Since then, additional research has expanded knowledge of working with patients who are terminally ill (Baer & Hanson, 2001; Hollen, Hollen, & Stolte, 2000; Raudonis, 1993).

In the late 1970s, government agencies recognized the need to research end-of-life care issues. In 1978, the U.S. Department of Health, Education, and Welfare established a task force that substantiated hospice care as a viable concept for terminally ill individuals and their families and as one that should receive federal support (Neigh, n.d.). Demonstration projects were funded by the Health Care Financing Administration in 1979 to study the cost effectiveness of hospice care and provisions necessary when caring for individuals with terminal illnesses. Research continued through foundation grants and helped initiate standards for hospice accreditation (Neigh, n.d.).

The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT), an extensive study of seriously ill hospitalized patients, was launched in 1989. The SUPPORT investigators published results related to symptom burden, preference for care, choices for resuscitation, and decision-making in seriously ìli hospitalized adults (Desbiens, Mueller-Rozner, Connors, Wenger, & Lynn, 1999; Desbiens, Mueller-Rozner, Hamel, & Connors, 1998; Knaus et al., 1995; Phillips et al., 1996). One of the most striking findings from this study was that participants requested end-of-life decisions prior to hospitalization and alternatives to aggressive treatment (Oliverio & Fraulo, 1998). Therefore, nurses must become patient advocates for hospitalized patients because these professionals are most actively involved in the day-to-day interactions with terminally ill individuals and their families.

As federal grants and foundation monies became available for hospice research, the Oncology Nursing Society developed guidelines in 1989 for submission of nursing research studies (Ferrell, Nail, Mooney, & Cotanch, 1989). These guidelines included criteria for contributing to the science of hospice, expanding future investigation, and increasing published literature (Sheehan & Forman, 1996). Furthermore, beginning in 2000 the NHPCO awards the Distinguished Research Award yearly to an individual who has made substantial contributions to hospice and palliative care.

Some practitioners argue that hospice care is intensely personal and should not be involved with research (Sheehan & Forman, 1996). However, early research endeavors by nurses and other health care professionals helped expand the hospice movement in the United States. Because the new millennium ushered in the promise of health care reform, it is essential that hospice establish a strong financial and health policy perspective through research. Consequently, research supporting hospice principles will be strengthened as the demands created by chronic disease and advancing age become greater than ever.

ISSUES WITH THE MODERN HOSPICE MOVEMENT

Many of the issues the early founders of the hospice movement faced are still evident in the 21st century. Some of these issues include:

* Idealistic vision of youth and vigor.

* Financial concerns related to reimbursement.

* Ongoing high technology of modern medicine.

* Resistance, especially from the health care profession.

Advocates of hospice care stress that the increasing elderly population in America, compounded with increasing longevity, co-morbid health concerns, advancing technology, and access, will only accelerate the need for end-of-lìfe choices (Corless, 1983). According to reports from the National Hospice Foundation, three of four Americans are not aware of the full extent of hospice services. Approximately 75% of Americans do not know that hospice care can be provided in the home, and approximately 90% do not realize that hospice care can be fully covered through Medicare (NHPCO, 2004).

Professionals and paraprofessionals must be innovative and embark on creative programs that increase the chances of hospices surviving and thriving in the future. One of the key elements to this survival is education. Nurses can be at the forefront of this movement through projects such as the Endof-Life Nursing Education Consortium funded by the Robert Wood Johnson Foundation. This 3V£-year project is in partnership with the American Association of Colleges of Nursing (AACN) and the Los Angeles-based City of Hope National Medical Center (AACN, 2004). One of the primary goals of this project is to develop a core of expert nursing educators to coordinate national nursing education efforts in end-of-life care (AACN, 2004). Also, this program will seek to foster collaboration with medical colleagues, schools of nursing, and health care agencies. Therefore, as consumers demand more endof-life choices, this approach may help eliminate uncertainty during a highly stressful time for families and their loved ones.

CONCLUSION

Education will foster the growth of future employees of a hospice program. Starting with the board of directors, hospice personnel must hire individuals who will help the hospice movement grow and prosper. These individuals need to understand the business of hospice without losing sight of its philosophy of care. Community support is essential, as well as cooperation with health care organizations. End-oflife care need not be overly expensive or impersonal. Although modern medicine has overlooked many of the needs of individuals who are dying, nursing can be proud that many of the founders of hospice were nurses who put patient needs above technology and specialized medicine.

The hospice movement will continue. Although health care reform has introduced new policies into the hospice movement, such as regulations, documentation, and fiscal and political realities, the basic principle of death with dignity endures. This movement has increased physician accountability, patient preferences, and family involvement - important elements of early hospice principles. Furthermore, as stated in the bylaws of the American Nursing Association (2001), one of the responsibilities of nursing is to respect human dignity and alleviate suffering. It is the art of nursing to provide quality care at the end of life. With this philosophy in mind and as founding partners of the nation's hospice concept, nurses must embrace their role in the history of and future goals for the hospice movement.

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