Improving cancer care at the end of life.

Excellent care for cancer patients and their families should extend throughout the illness, and should include care provided at the end of life. Recent evidence, including a report from the Institute of Medicine, has emphasised that major reform is needed to improve relief of pain, other symptoms, and psychosocial care. This paper reviews the critical necessity for reform in end-of-life care for the field of oncology and the major educational efforts required to ensure that oncology professionals can respond to this need.

Analysis of palliative care content in nursing textbooks.

Overall, this study demonstrates significant deficiencies in end-of-life care content in nursing textbooks. Defining palliative care, quality of life at the end of life, and issues of policy, ethics, and law are the foundation of end-of-life care. Analysis of these topics revealed a need to clarify concepts and to apply them within the context of end-of-life care. The analysis also demonstrated a need to transfer findings from palliative care research and concepts from hospice into basic education. In March 1999 the investigators convened a conference in New York in collaboration with a group of medical investigators analyzing EOL content in medical textbooks. The conference was also attended by publishers, editors, and authors of textbooks. The investigators were very encouraged by their interest in and commitment to correcting any weaknesses in their books. The investigators provided them with specific recommendations for improvement and resources for locating both appropriate content and authors with palliative care expertise. These resources are also made available on the City of Hope Pain Resource Center Web site (http:@mayday.coh.org). Achieving the overall project goal of strengthened nursing education in end-of-life care will be reached through a variety of measures. Improving textbooks is but one important step. The various disciplines involved in palliative care can contribute to this project by working in collaboration with textbook publishers.

Analysis of pain content in nursing textbooks.

This paper reports on one goal of a project designed to improve end-of-life (EOL) care in nursing education. The goal was to improve the content regarding pain and EOL care included in major nursing textbooks. A descriptive study used content analysis of 50 textbooks selected from a potential of over 700 texts used in nursing education. The 50 texts included 45,683 pages. The text review was conducted using an analysis framework and included content analysis as well as quantification of the content present in the texts. While pain was the most common topic in the texts, the 248 pages of pain content represents only 0.5% of total text content. All nine areas of EOL content (902 pages) comprised only 2% of overall text. Particular weaknesses in the review of pain content were recognized in pharmacologic management of pain. In summary, nursing texts have limited content on pain. Increased attention to this area is essential to prepare nurses to care for patients at the end of life.

Beyond the Supreme Court decision: nursing perspectives on end-of-life care.

PURPOSE/OBJECTIVES: To describe nurses' views of care of the terminally ill. DESIGN: Descriptive cross-sectional survey. SAMPLE: 300 nurses who completed a survey published in Nursing98 and Nursing Management and 2,033 nurses randomly selected from the Oncology Nursing Society (N = 2,333). METHODS: Mailed end-of-life (EOL) care survey. MAIN RESEARCH VARIABLES: Dilemmas, barriers, and effectiveness of EOL care and education and attitudes regarding assisted suicide and euthanasia. FINDINGS: EOL care dilemmas are common in nursing practice, and many barriers exist to providing quality EOL care. Issues of euthanasia and assisted suicide are particularly significant to nurses who struggle to provide pain and symptom relief amid a system characterized by deficiencies in EOL care. CONCLUSIONS: Improved care is contingent on adequate education of nurses as the primary caregivers of patients and families who are facing the end of life. Study findings provide direction for improved care of the terminally ill. IMPLICATIONS FOR NURSING PRACTICE: Oncology nurses are centrally involved in care of the terminally ill. Major reform is needed to provide quality EOL care.

Dignity in dying.

Barriers to effective end-of-life care encompass patient, professional, and system issues. Learn the findings of a landmark study on how well nurses meet the needs of dying patients.

Analysis of content regarding death and bereavement in nursing texts.

Information contained in textbooks provides the foundation for undergraduate education and entry into clinical practice. Inadequate knowledge of health care professionals in end of life (EOL) has been documented and efforts are in progress to improve this care. This paper reports on a project to strengthen nursing education in EOL care. One of the three project goals was the evaluation of EOL content in 50 nursing textbooks. This paper reports findings in two of the nine areas of the analysis framework which are Death and Bereavement. Findings indicate significant deficiencies in the content within these texts. Improvement in text content will require collaboration of palliative care professionals and textbook publishers and can result in increased ability of nurses to improve EOL care.

Analysis of end-of-life content in nursing textbooks.

PURPOSE/OBJECTIVES: To determine the amount and types of content regarding pain and end-of-life (EOL) care included in major textbooks used in nursing education. DESIGN: Descriptive. SAMPLE: 50 texts (45,683 pages) selected from a potential of more than 700 texts. METHODS: Content analysis and quantification of nine essential areas of EOL care content present in the texts. MAIN RESEARCH VARIABLES: Nine areas of EOL care: palliative care defined; quality of life, pain; other symptom assessment/management; communication with dying patients and families; role/needs of family caregivers in EOL care; death; issues of policy, ethics, and law; and bereavement. FINDINGS: Only 2% of the overall content and 1.4% of chapters in nursing texts were related to EOL care. Based on the analysis, many deficiencies were identified in the texts, including inaccurate information and a lack of information regarding critical EOL topics. CONCLUSIONS: Nursing texts contain limited content regarding EOL care. Increased attention to this area is essential in preparing nurses to care for patients at EOL. IMPLICATIONS FOR NURSING PRACTICE: Nursing practice is based on the foundation of nursing education. Changes in nursing school curriculum and provision of continuing education for practicing nurses are essential for improved EOL care.

Strengthening nursing education to improve end-of-life care.

The survey results provide future direction for nursing education. Results indicate an awareness in the nursing profession of the need for improved EOL care and identification of resources to achieve that goal. Many activities have been initiated within the nursing community, and the results of this project hopefully will stimulate additional activities. The imperative for improved EOL care will escalate in the future as our elderly population grows and a burdened health care system confronts the costs of chronic and terminal illness. Palliative care, which has traditionally been limited to hospice programs, must extend to other settings and be incorporated into the trajectory of care. The IOM report and other palliative care literature asserts that improved care for the dying will necessitate change at many levels. Patients and the general public must be educated to expect a higher standard of care at the EOL. Health care system changes are needed to improve access to care and to eliminate barriers such as regulatory constraints on prescribing opioids. However, central to all health care reform is the need for educated professionals to direct this change. As professionals dedicated to patient comfort and quality of life--even at the EOL, nurses should begin the revolution in EOL care by attending to the education of nurses.

Analysis of symptom assessment and management content in nursing textbooks.

This article reports on one goal of a project designed to improve end-of-life (EOL) care in nursing education. The goal was to improve the content regarding pain and EOL care included in major textbooks used in nursing education. A descriptive study design was selected using content analysis of 50 texts selected from a potential of over 700 texts. The 50 texts included 45,683 pages. The text review was conducted using an analysis framework encompassing 9 essential areas of EOL care. The study methods included content analysis as well as quantification of the content present in the texts. The 9 areas of the analysis framework were: palliative care defined; quality of life; pain; other symptom assessment/management; communication with dying patients and families; role/needs of family caregivers in EOL care; death; issues of policy, ethics, and law; and bereavement. This article reports on the findings of the analysis related to symptom assessment/management. Nursing texts have limited content on symptom assessment and management. Increased attention to this area, a critical role of nursing, is essential to improved care for patients at EOL.

HOPE. Home Care Outreach for Palliative Care Education.

PURPOSE: The goal of this project was to develop and test an educational program to extend the principles of palliative care into home-care agencies. The specific aims were: 1) to assess current practices within select home-care agencies regarding care of the dying; 2) to design the educational program, the HOPE (Home Care Outreach for Palliative Care Education) curriculum, to include relevant content for realistic implementation in home-care agencies; 3) to implement the HOPE project in two home-care agencies; and 4) to assess outcomes of the project and plan for future dissemination to home-care agencies and organizations. DESCRIPTION OF PROGRAM: A pilot project developed and tested five training modules including overview of end-of-life care, pain management, symptom management, communicating with patients and families, and the death event. A needs assessment survey completed by 134 home-care agencies provided input for the training course development. The five-part curriculum was developed by an interdisciplinary team of investigators and consultants and implemented in two agencies with 52 staff members participating. Two agencies then were selected to participate in pilot testing the curriculum. Precourse and postcourse surveys provided evaluation of the program content. RESULTS: Results from the home-care agency survey demonstrated the need for improving end-of-life care. Only 32% of nonhospice agencies reporting the availability of specially trained nurses for care of the terminally ill, and only 16% of the agencies reported providing such training. Pilot testing of the HOPE curriculum suggested that it was well received by staff members. Assessment of both self-effectiveness and agency effectiveness revealed greater comfort with content such as communication and other symptom management followed by the areas of pain management, managing the death at home, and cultural issues in end-of-life care. The overall rating of end-of-life care increased from a mean rating of 5.97 to 7.42 for self-assessment and from 6.59 to 7.94 for agency assessment (on a scale of 0 to 10, with 0 = not at all effective to 10 = very effective). This project identified areas of education needed to improve care at the end of life. The HOPE curriculum will be refined and extended to reach other home-care agencies to benefit their staffs and the patients they serve. CLINICAL IMPLICATIONS: Home care agencies provide extensive care to patients and families facing many physical and psychosocial demands at the end of life. Palliative care education is important to support home-care professionals across all disciplines in optimum end-of-life care. This education should focus on aspects of physical care, such as treatment of pain, dyspnea, confusion, and fatigue, and also to address decisions about physical care, such as hydration/nutrition at the end of life. Psychosocial dimensions of care at home can be improved by attention to issues such as communication with dying patients and families, cultural considerations, and the special care required at the time of the actual death at home.

Improving end-of-life care education in home care.

A training program for home care professionals, HOPE (Home care Outreach for Palliative care Education), was designed to improve the knowledge and skills of those providing care to patients and family caregivers at home. This article presents an overview of the pilot HOPE training program and a case study to illustrate the complex end-of-life (EOL) care needs in nonhospice home care settings. HOPE was designed as five training modules based on a needs assessment survey completed by 134 home care agencies. The training modules were composed of (a) General Overview of End of Life Care; (b) Pain Management; (c) Symptom Management; (d) Communication with Patients and Families; and (e) the Death Event. The program was implemented for clinical staff (N = 52), predominantly nurses, in two home care agencies and evaluated with pre- and postcourse surveys. Pre- and postcourse evaluations demonstrated an increase in the overall rating of EOL care from a mean rating of 5.97 to 7.42 for self-assessment and from 6.59 to 7.94 for agency assessment (on a scale of 0 = not at all effective to 10 = very effective). Future palliative care education should also include evaluation of the impact of such programs on patient care. We concluded that increasing palliative care knowledge of home care professionals is necessary to improve patient care at the EOL.