The findings from this study suggest that a number of skills that nurses' view as extremely important for quality end-of-life care are absent from their everyday practice. Hence, a major finding of this study is that experienced nurses have identified unmet end-of-life care educational needs and health care systems deficits that prevent delivery of optimal end-of-life care. The majority of the skills identified as extremely important to quality end-of-life care yet currently under-utilized could serve as a template to develop targeted curricula. These targeted curricula could be taught to practicing nurses within the context of the setting and the patient population they serve.17
For example, nurses practicing in out-patient settings were more likely to rate “telling patients how their illness may impact their life” as an extremely important and under-utilized skill. An appropriate intervention may assist nurses working in out-patient settings to address aspects of care that allow patients to preserve their quality of life. In addition to identifying educational needs, these findings emphasize that quality end-of-life care could not be adequately delivered without improvements in the systems in which they provide care for dying patients. Together, these findings highlight some of the reasons for under-utilization of specific end-of-life care nursing skills and provide direction for practical solutions to improve care for dying patients and their families.
A second finding supported nurses' expressed need for skills to enable more effective end-of-life communication.13,18,19
Nurses in our study identified eight specific communication items as important but under-utilized in end-of-life care. Their qualitative comments on the survey similarly emphasized communication skills as important but under-utilized. Other studies on end-of-life care have identified communication as a key element to providing quality care.20
When nurses in acute care settings were asked about initiating or conducting discussions about hospice or prognosis, more than half (52%) of the nurses reported that they did not discuss hospice and 27% reported that they did not discuss prognosis with any of their terminally ill patients.21
While these findings suggest nurses view patient discussions of hospice and prognosis as outside their scope of practice, other studies suggest nurses desire more involvement when these aspects of communication are necessary for advance care planning and coordination of care.17,22,23
Families also identify the important role nurses play in communication. In a community-based study, families reported that nurses were more likely to have discussed symptoms and their treatment than physicians and that discussions with nurses were more understandable than those with physicians.24
These data confirm the importance of nurses in the communication and coordination of care for dying patients and their family members. Our findings support the need to expand nurses' skills and to offer opportunities to participate in end-of-life communication as a way to improve the quality of end-of-life care. Targeted educational programs in combination with healthcare system changes may be needed to support nurses' roles in end-of-life care communication.23
A third finding from our study suggests that clarity of team members' roles and interdisciplinary communication are seen by nurses as contributing importantly to quality end-of-life care, yet are lacking in actual practice. Our findings highlight the need for teams to insure that patients do not feel abandoned prior to their death and that they receive consistent information from the health care team.25
Yet our findings also acknowledge the challenges faced by nurses in achieving these goals. A recent study testing the effects of a standardized framework aimed at improving communication among diverse professionals in palliative care demonstrated that nurses valued formal interdisciplinary meetings and physicians preferred informal ad hoc dialogue. The nurses explained that meeting the needs of their patients was often contingent upon receiving information from physicians and formal meetings facilitated information sharing.26
Another study investigated nurses' communication of prognosis and the implications for hospice referral.27
The authors concluded that improved communication among nurses, physicians, patients and family members might result in more hospice referrals. Additionally, their findings supported the need for clarity regarding the lines of responsibility between physicians and nurses when managing discussions about prognosis and hospice. These findings highlight the need to develop interdisciplinary, formal team meetings so that physicians, nurses and other team members have the opportunity to clarify roles and responsibilities of the health care team in the delivery of end-of-life care.
The fourth main finding of our study is the identification of health care system barriers that prevent effective care for dying patients and their families. These barriers were identified in the quantitative survey under the domain of patient-centered care systems.
Nurses endorsed the importance of minimizing interruptions and taking time with dying patients, yet identified conflicting organizational demands. The qualitative comments focused on the need to account for patient acuity levels and the time allotted to provide care for dying patients. In a study of end-of-life care for patients with chronic obstructive pulmonary disease, key barriers to referring patients to palliative care included: clinician's lack of time, increased workloads, and paucity of palliative care resources and care facilities.28
While development of end-of-life care skills may facilitate more efficient delivery of care to dying persons, addressing organizational barriers presented by health care systems is simultaneously needed.
This study has a number of limitations. First, the procedure for generating the physician sample may have resulted in a unrepresentative sample. Physicians were asked to commit a significant amount of time to the study and consequently, the physician response rate was low (49%). This may select for physicians with an interest in end-of-life care. Their nurse referrals may similarly reflect this bias although, among referred nurses, the response rate was considerably higher (79%) and suggests that, at least among those referred, the group may be more representative. Despite the potential for bias, the sample was large and geographically diverse from within the U.S. Second, the “Nurse Role in End-of-life Care Questionnaire” had not been validated prior to collection of these data. However, patterns of item completion and written comments did not reveal problems with face validity. Third, the test-wise error rates on the Chi square analyses may have produced statistically significant differences by chance alone and therefore should be interpreted with caution. Finally, the data were collected between 2002 and 2005 and therefore may not represent current nursing practice in some areas. However, to our knowledge, development of end-of-life care curricula for practicing nurses targeted to these areas have not been implemented broadly and therefore most of these skills are unlikely to have been addressed.
Nurses experienced with caring for patients at the end-of-life offer an important perspective on skills and activities that need to be offered to dying patients. This study provides a summary of skills that nurses feel are extremely important but currently under-utilized by nurses caring for patients diagnosed with life-threatening illnesses. These include a focus on communication skills, symptom management, and patient-centered care systems. Our findings suggest skill and knowledge areas that are relevant and appropriate for end-of-life educational curricula and interventions designed for practicing nurses. In addition, this study identified health care system barriers that prevent effective provision of care to dying patients and their families. End-of-life care interventions need to address changes in the care delivery system and culture in addition to improving individual nurses' skills in order to be effective. Ultimately, the development of improved end-of-life nursing skills and enhanced patient-centered healthcare systems should translate into a higher quality dying experience for patients and family members.