Nurses' attitudes about end-of-life referrals.
Changes in the causes of death and advances in medical technology are leading nurses today to become more involved with end-of-life care than previously. Yet, terminally ill patients and their families have reported dissatisfaction with end-of-life care. One reason for the dissatisfaction may be attitudes among nurses about end-of-life care and hospice referral. Attitudes about end of life affect nurses' ability to care for and communicate with patients and families facing these issues. For this reason, it is important to examine nurses' attitudes about end-of-life care, specifically hospice referral, to improve care to patients and families facing death.
"Death is still a fearful, frightening happening and the fear of death is a universal fear even if we think we have mastered it on several levels" (Kubler-Ross, 1969, p. 5).
Although death is inevitable for each one of us, discussing end-of-life preferences with patients and families is not common among nurses (Schulman-Green, Mc Corkle, Cherlin, Johnson-Hurzeler, & Bradley, 2005). Accompanied by high technology and advanced medicine, health care is credited with saving lives. The ability to rescue critically ill or injured patients makes healthcare professionals likely to focus on technology (Morreim, 1992). However, the use of extreme technology may prolong the dying process and consequently intensify pain and suffering, diminish dignity, and decrease quality of life (p. 228).
With more people dying in the hospital setting than at home, nurses are further involved with end-of-life care. Yet, many terminally ill patients and their families report dissatisfaction with end-of-life care (Moskowitz & Nelson, 1995). Healthcare efforts that focus on quality of life are associated with higher satisfaction with end-of-life care (Patrick, Curtis, Engelberg, Nelsen, & McCown, 2003). Hospice focuses on quality of end-of-life care (O'Brien, 2002). However, patients who may be eligible for hospice are frequently not notified for referral (Davie, 1999; Kalman & Rolland, 2007). Kalman and Rolland (2007) suggested several reasons for the possible delay in hospice referrals, one being attitudes about end-of-life care among healthcare professionals. For this reason it is important to examine nurses' attitudes about end-of-life care.
Bradley, Cicchetti, Fried, Rousseau, Johnson-Hurzeler, Kasl, et al. (2000) explored nurses' attitudes about end-of-life care. The authors felt that "a better understanding of clinicians' attitudes through measurement can both inform and help evaluate interventions and improve care of the dying" (p. 7). Bradley and colleagues developed a tool to measure clinician's attitudes about end-of-life care. The tool consisted of 12 items using a five-point Likert scale and contained three concepts: professional responsibility, efficacy of hospice, and clinician-patient communication about end-of-life issues. Professional responsibility involves the nurse's perception of their role in hospice referral. Efficacy of hospice involves the nurse's knowledge of hospice and their perception of its benefits. Clinician-patient communication involves the nurse's comfort level and readiness to discuss end-of-life issues.
The purpose of this article is to explore literature concerning attitudes about end-of-life care among nurses, specifically professional responsibility, efficacy of hospice, and clinician-patient communication. The major search engines used were the Cumulative Index to Nursing and Allied Health Literature (CINAHL), Medline, and PubMed, using the subject headings end-of-life and hospice. Limits were research, English, and the years 2000-2007. CINAHL produced 1,152 results on end-oflife and 1,110 on hospice. These results were combined with subjects including nurse, attitude, nursing role, knowledge, and communication. Articles were excluded if they focused on physicians, advanced practice nurses, community health, long term care, or hospital administration. Medline and PubMed revealed some similar results, although they produced fewer articles on the nursing role. Collectively, 25 articles were reviewed. Other resources included texts and educational materials.
The focus of end-of life care has changed over time, as has cause of death. Until the mid-20th century the cause of death was commonly due to infectious disease. With the advent of antibiotics after World War II, the more common cause of death became complications from chronic illness (O'Brien, 2002). Through new and evolving technology, many illnesses and conditions that shortened lives could now be cured and functions restored. For those not cured, however, the dying process was prolonged (p. 4). The concept of hospice was developed in response to this changing profile of death. Hospice was established in the United States in 1974 followed by the development of the National Hospice Organization in 1978 (Davie, 1999; Friedrich, 1999). In 1983, Medicare offered payment for hospice services (Rhymes, 1990). Today, hospice services are available to support the patient through the dying process and the family through the dying and bereavement process, yet few persons benefit because of delayed timing of referrals (O'Brien, 2002). The median length of stay in hospice is about 21 days (Emanuel, von Gunten, & Ferris, 2000; Stillman & Syrjala, 1999). In a descriptive study of patients referred for hospice services, Kalman and Rolland (2007) note that patients are often referred for hospice services (n = 124) too late to use the services effectively. They found that because patients were referred so late in the disease process, many patients died after being referred for hospice services but before being admitted to hospice. The authors also noted an increased number of patients died within one week of admission to hospice.
SUPPORT (the Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatment, 1989-1994) was a landmark study involving 9,105 seriously ill patients (SUPPORT Principal Investigators, 1995). The investigators used a two-phase design to examine quality of life and perspectives on end-of-life care. During Phase I a prospective observational design was used with the 4,301 patients. The investigators found that 79% of patients who died while hospitalized had a Do Not Resuscitate (DNR) order, although 46% of those were written within 2 days of death. Of those patients who died while hospitalized, 38% spent 10 days or more in an intensive care unit. Among patients who could communicate effectively, 50% reported moderate to severe pain during the last days of their life. Phase II involved random selection including 4,804 physician-patient dyads. An intervention was used involving a specially trained nurse to communicate and facilitate advanced care planning to the multidisciplinary team; however, the intervention did not demonstrate statistical significance. The authors concluded that improving end-of-life care in the acute care setting may entail greater individual and societal commitment and more proactive and forceful measures.
Professional responsibility was the first concept identified by Bradley and colleagues (2000) and involved the nurse's role as a patient advocate. Nurses are the most visible members of the healthcare team caring for dying patients and their families. The complex role of the nurse includes functioning as a resource for information involving medications, equipment, and procedures, as well as acting as coordinator of symptom management for dying patients (O'Brien, 2002; Puntillo, 2001). Accordingly, patients and families turn to nurses for information, options, and resources.
As an advocate, the nurse helps patients and families make important decisions about hospice and serves as a primary liaison between the healthcare team and the patient and family. Cramer, McCorkle, Cherlin, Johnson-Hurzeler, and Bradley (2003) explored the nurse's role in discussing hospice with terminally ill patients using a cross-sectional design with randomly selected registered nurses (n = 180) from six community hospitals. The authors found that over half reported they did not discuss hospice with their terminally ill patients. Nurses were more likely to discuss hospice with terminally ill patients and their families if they previously had a satisfying experience with hospice or had worked as oncology nurses.
Efficacy of hospice
Efficacy of hospice was Bradley's second concept, which involved the nurse's self-reported knowledge of and the perceived benefits of hospice (Bradley et al., 2000). As an educator and resource, it is essential for nurses to be knowledgeable about hospice. Hospice is a complex service. In the United States, hospice services are limited to the last 6 months of life by Medicare and reimbursement agencies (Ferrell & Coyle, 2002). Many countries with socialized health coverage do not struggle with a 6-month limitation but offer hospice as needed (Lichter, 1984). This may explain why some patients in the United States may not receive hospice care in a timely manner since, in reality, death cannot be accurately predicted (Ferrell & Coyle, 2001).
Education is a key component when addressing efficacy of hospice. Johnson and Slaninka (1999) used a retrospective, exploratory, descriptive design involving caregivers (n = 11), hospice staff (n = 20), volunteers (n = 22), and referring physicians (n = 30) to identify barriers to hospice care. The authors found that attitudes about hospice care were associated with the reluctance to disclose, discuss, or acknowledge that a patient was dying. Discussion of hospice was perceived as giving up on the patient. In addition, the highest rated perceived barrier was knowledge deficit, as noted by 90% of hospice staff and physicians. Cramer et al. (2003) reported that nurses having hospice training reported greater perceived role responsibility and self-rated knowledge, in addition to higher comfort levels initiating discussions in relation to end-of-life issues.
Clinician-patient communication, Bradley's third concept (Bradley et al., 2000), involved the nurse's readiness to discuss end-of-life issues. This may be the most important of the three concepts. Discussions with patients and family regarding end-of-life preferences often takes place late in the course of an illness, delaying hospice referrals (Emanuel et al., 2000; Schulman-Green, et al., 2005). Consequently, many terminally ill patients and their families do not reap the benefits of hospice services. Bradley, Cherlin, McCorkle, Fried, Kasl, Cicchetti, et al. (2001) reported that nurses often did not discuss critical end-of-life issues because they preferred to leave that discussion for the medical staff.
Where do nurses learn to discuss end-of-life care? End-of-life issues are poorly addressed, both in nursing schools and healthcare institutions (Emanuel et al., 2000). The American Association of Colleges of Nurses joined forces with the City of Hope National Medical Center to educate nurses about end-of-life care (Sherman, Matzo, Panke, Grant, & Rhome, 2003). Subsequently, the End-of Life Nursing Education Consortium (ELNEC) was developed with funding support from the Robert Wood Johnson Foundation. The principle goal of the training program was to provide nurses with information and resources for end-of-life care (Sherman et al., 2003).
Programs designed to improve communication skills are being used worldwide. Such programs include the Program to Enhance Relational and Communication Skills (PERCS), which involved a series of scenarios focusing on end-of-life issues and situations to help clinicians develop effective communication skills (Burns & Rushton, 2004). Buckman (1989) developed a six-step protocol for "breaking the bad news" that is used throughout the United States and Canada, in addition to the ELNEC programs (von Gunten, Ferris, & Emanuel, 2000).
Implications for nurses
Nurses' attitudes about death affect the care they give to dying patients and their ability to discuss hospice and other end-of-life choices. As healthcare technology advances, more terminally ill patients and their families will need nurses who are willing to discuss end-of-life options. Discussions between nurses and terminally ill patients are often delayed or do not occur at all. Although there are programs to educate nurses, many have not been evaluated for efficacy. Colleges of nursing and healthcare institutions do not include much coursework on practical skills for working with dying patients. Faculty need to include hospice and palliative care clinical rotations. Healthcare institutions need to offer end-of-life competencies for new RN graduates as well as seasoned nurses. These efforts will change attitudes and, in turn, improve end-of-life care.
Bradley, E. H., Cherlin, E., McCorkle, R., Fried, T.R., Kasl, S. V., Cicchetti, et al. (2001). Nurses' use of palliative care practices in the acute care setting. Journal of Professional Nursing, 17(1), 14-22.
Bradley, E. H., Cicchetti, D. V., Fried, T. R., Rousseau, D. M., Johnson-Hurzeler, R., Kasl, S. V., et al. (2000). Attitudes about care at the end of life among clinicians: A quick, reliable, and valid assessment instrument. Journal of Palliative Care, 16(1), 6-14.
Buckman, R. (1989). Why won't they talk to me? London: Linkward Productions Ltd.
Burns, J., & Rushton, C. H. (2004). End-of-life care in the pediatric intensive care unit: Research review and recommendations. Critical Care Clinics, 20, 467-485.
Cramer, L. D., McCorkle, R., Cherlin, E., Johnson-Hurzeler, R., & Bradley, E. H. (2003).Nurses' attitudes and practice related to hospice care. Journal of Nursing Scholarship, 35(3), 249-255.
Davie, K. (1999). Preserving hospice's core values in an environment of change. The hospice professional. Alexandria, VA: National Council of Hospice Professionals.
Emanuel, L., von Gunten, C., & Ferris, F. (2000). Gaps in end-of-life care. Archives of Family Medicine, 9(10), 1176-1180.
Ferrell, B., & Coyle, N. (2001). Textbook of palliative care nursing. New York: Oxford University Press.
Ferrell, B., & Coyle, N. (2002). An overview of palliative nursing care. American Journal of Nursing, 102(5), 26-32.
Friedrich, M. J. (1999). Hospice care in the United States: A conversation with Florence S. Wald. JAMA, 281(18), 1683-1685.
Johnson, C. B., & Slaninka, S. C. (1999). Barriers to accessing hospice services before a late terminal state. Death Studies, 23(3), 225-238.
Kalman, M., & Rolland, R. (2007). Notification of eligibility for hospice services for terminally ill patients [Monograph]. Conversations in the disciplines: Sustaining rural populations. Binghamton, NY: Global Academic Publishing.
Kubler-Ross, E. (1969). On death and dying. New York: Macmillan
Lichter, I. (1984). Specialist palliative care services. In D. Doyle (Ed.), Palliative care: The management of far advanced illness (pp. 486-517). Philadelphia: The Charles Press.
Moskowitz, E. H., & Nelson, J. L. (1995). The best laid plans. Hastings Center Report, 25(6), S3-S6.
Morreim, E. H. (1992). The impossibility and necessity of quality of life research. Source Bioethics, 6(3), 218-32.
O'Brien, N. (2002). Nursing care at the end of life. Sacramento, CA: CME Resource.
Patrick, D. L., Curtis, J. R., Engelberg, R. A., Nelsen, E., & McCown, E. (2003). Measuring and improving the quality of dying and death. Annals of Internal Medicine. 139(5), 410-415.
Puntillo, K. (2001). Symptom management at end of life: The importance of nursing. American Nurse, 33(3), 19.
Rhymes, J. (1990). Hospice in America. JAMA, 264(3), 369-372.
Schulman-Green, D., McCorkle, R., Cherlin, E., Johnson-Hurzeler, R., & Bradley, E. H. (2005). Nurses' communication of prognosis and implications for hospice referral: A study of nurses caring for terminally ill hospitalized patients. American Journal of Critical Care, 14(1), 64-71.
Sherman, D. W., Matzo, M. L., Panke, J., Grant, M., & Rhome, A. (2003). End-of-life nursing education consortium curriculum: An introduction to palliative care. Nurse Educator, 28(3), 111-120.
Stillman, M. J., & Syrjala, K. L., (1999). Differences in physician access patterns to hospice care. Journal of Pain and Symptom Management, 17(3), 157-63.
SUPPORT Principal Investigators. (1995). A controlled trial to improve care for the seriously ill hospitalized patients: The study to understand prognoses and preferences for outcomes and risks of treatments. JAMA, 274(20), 1591-1598.
von Gunten, C. F., Ferris, F. D., & Emanuel, L. L. (2000). Ensuring competency in end-of-life care: Communication and relational skills. JAMA, 248(23), 3051-3057.
Roberta A. Rolland, MS, RN, FNP
Melanie Kalman, PhD, CNS
Roberta A. Rolland is a nurse practitioner with Cardiothoracic Surgery at University Hospital, SUNY Upstate Medical University in Syracuse, NY, and a doctoral student at Decker School of Nursing, Binghamton University, Binghamton, NY. Melanie Kalman is an associate professor and director research at the College of Nursing, SUNY Upstate Medical University in Syracuse, NY.