Crump, Saundra K. PhD(c), MSN, RN, CHPN; Schaffer, Marjorie A. PhD, RN; Schulte, Evie BSN, RN, LAc
Nurses are challenged in their efforts to provide quality end-of-life (EOL) care in critical care settings that emphasize curative and aggressive lifesaving treatment.1 Death occurs during or shortly after leaving critical care units for 30% of these patients.2 Transitioning patients from cure to EOL care can be unclear or awkward and contribute to stress experienced by critical care nurses. Nurses believe they have important advocacy roles in assisting patients in this transition but may be uncomfortable with their skills to do so.3-6
Nurses perceive a good death as one that includes freedom from pain, provision of comfort, respect for the dignity of the patient, meeting family needs for EOL rituals, and enough time for family members to say goodbye.6-8 Nurses also viewed consensus between the family, patient, nurse, and physician (MD) as contributing to quality EOL care experience and a good death.5 For family members, desired components of EOL care include adequate pain control, feeling at peace with the dying process, dignity and self-respect for the patient, having some control of the dying process, and clear communication.9-12
In a survey of members of the American Association of Critical-Care Nurses, subjects identified barriers to good EOL care as lack of staff time, staff shortages, lack of clear communication between health care team members, and treatment decisions that were not based on patient needs and preferences.13 Nurses expressed frustration about having a limited role in contributing to EOL care decisions when they have unique knowledge and understanding of the patients' experiences and wishes.14
Palliative care is a relatively new health care discipline aimed at relieving pain, stress, and symptoms of serious illness and improving communication with patients who have a serious diagnosis regardless of their prognosis. Palliative care is best delivered by an interdisciplinary team that considers the 8 domains defined by the National Consensus Project Clinical Guidelines for Quality Palliative Care: (1) structure and process of care; (2) physical aspects; (3) psychological and psychiatric aspects; (4) social aspects; (5) spiritual, religious, and existential aspects; (6) cultural aspects; (7) care of the imminently dying patient; and (8) ethical and legal aspects.15,16 The current disintegrated system does not comprehend "whole patients who have desires, feelings, reasons for being, and sometimes reasons to let go so that their final moments of being are peaceful and spent with family."17(p136) Palliative care and critical care nursing can be integrated by moving from disintegration to integrity. A model that integrates "being with patients" along with "doing things to them" will result in holistic healing relationships that address the physical, emotional, and spiritual well-being of patients and families.18 These healing relationships involve shared decision making and aim to honor each patient's (and family member's) preferences, values, and goals. For critical care patients, this means that registered nurses (RNs) and MDs should use an approach that focuses on simultaneously providing critical care and palliative care versus first providing critical care, followed by palliative care if critical care strategies are unsuccessful. The National Institute of Nursing Research calls this approach "Integrating Palliative and Critical Care" (IPACC).2
An evaluation of the environment for EOL care and the identification of knowledge needed for effective EOL care can contribute to strategies for improving care and outcomes for patients and families. Potential benefits for patients, families, health care staff, and the organization include (1) increased satisfaction of patients and their families with the process that surrounds transitioning from curative to EOL care and through the dying process, (2) establishment of standardized approaches to EOL care in the critical care environment, (3) development of unit-based nursing expertise in EOL care, (4) increased nursing knowledge about strategies to help patients transition from curative to EOL care, and (5) improved interdisciplinary communication among health care personnel.
Purpose of Research
In response to concerns about the quality of EOL care in critical care units in a 446-bed level I Midwestern urban trauma center, 2 staff nurses attended the End-of-Life Nursing Education Consortium (ELNEC) Critical Care Training.19 Before moving forward to implement educational modules in the hospital, the nurses, with the support of the Evidence-Based Nursing Practice (EBNP) Committee, initiated a study to explore the obstacles (barriers) to, and supports for, EOL care in their critical care units. In addition, the staff nurses wanted to survey critical care nurses' perceived knowledge needs for providing quality EOL care. The purpose of the study was consistent with the goals of the IPACC to promote quality and overcome barriers to quality EOL care in critical care settings.2
The concerns of staff nurses and the desire to improve EOL care in critical care settings led to the following research questions:
1. What are critical care nurses' perceptions of obstacles to, and supports for, EOL care in the critical care environment?
2. What do critical care nurses perceive as the knowledge and skills they need to provide quality EOL care?
Following expedited approval from the hospital institutional review board, the researchers replicated a study by Beckstrand and Kirchhoff20 using their National Survey of Critical Care Nurses Regarding End-of-Life Questionnaire. The questionnaire contained 29 obstacle items, 24 supportive behavior items, 4 open-ended questions, and 15 demographic questions. Internal consistency reliability for the Beckstrand and Kirchhoff study ranged from 0.81 to 0.89 for subscales. The open-ended questions asked respondents to identify missing obstacles and helpful behaviors, one thing they would like changed in EOL care, and any additional comments.20
The Perceptions of Knowledge Needed for Providing End-of-Life Care Survey, developed by the authors, was based on the ELNEC curriculum. Respondents were asked to rate their need for further education for each topic on a 4-point Likert scale. (See Table 1 for a list of topics.) The 2 open-ended questions were as follows: (1) What was most important to know to improve EOL care? (2) What knowledge or skills should be addressed that were not on the list? The researchers distributed surveys (via internal hospital mail) to all 180 permanent and float pool staff nurses in adult critical care units. Nurses returned the surveys to a box on the unit to protect their confidentiality. They had the option to ask for a $3.00 gift card for the hospital coffee vendor upon completion of the questionnaires.
Quantitative data were analyzed using the SPSS (Statistical Package for the Social Sciences; SPSS Inc, Chicago, Illinois) data management system. Participants rated obstacle and support items on a 0-point (low) to 5-point (high) Likert scale. Obstacles were rated for intensity (not at all to large) and frequency (never occurs to always occurs). Supports were rated for intensity of helpfulness (not helpful to extremely helpful) and frequency (never occurs to always occurs). Means were computed for each item. From these means, the perceived intensity score (PIS = intensity mean × frequency mean) was computed for each of the obstacles, and the perceived supportive behavior score (PSBS = intensity of helpfulness mean × frequency mean) was computed for supports. Answers to open-ended questions were analyzed to identify comments that added new information or supported the quantitative findings.
The response rate was 31% (56/180); 87.5% of subjects were female, and 12.5% were male. The age of respondents ranged from 23 to 62 years, with a mean age of 41.8 years. Participants had worked an average of 15 years as an RN (range, 1-36 years) and an average of 11 years in an intensive care unit (ICU) (range, 1-33 years). However, 21% had less than 4 years as an RN, and 39% had worked less than 4 years in an ICU. There was also a large group (23.6%) that had worked 25 years or more. Only 43 respondents reported their education level; 17 had associate degrees, 2 had diplomas, and 24 had bachelor's degrees. Sixty-four percent reported that they had cared for more than 10 EOL patients; of these, 26% had cared for more than 30 EOL patients.
Obstacles to Providing EOL Care in Critical Care Settings
For the 29 obstacle items, the PIS ranged from 15.6 to 2.0 (Table 2). The obstacle regarding family and friends who continually call the nurse rather than a designated family member for an update had the highest score (item 1). The PIS (15.6) for this item represents the highest intensity mean (4.23) × the highest frequency mean (3.68). Seventeen of the 29 obstacles had means greater than 3, and 10 of these had a PIS of greater than 10. Many of the items with the highest PIS were about family issues. The next highest group of PIS pertained to MDs (items 12, 14, 16, 17).
For the open-ended question about additional obstacles, participants identified several concerns regarding the provision of aggressive care. One nurse commented about having to continue aggressive care while waiting for out-of-town family members to arrive. Another nurse described having to provide aggressive care when a patient's prognosis is poor. Other nurses identified a lack of education for patients and families about prognosis and the need for EOL care. Also, a nurse said family members had expressed that not providing aggressive care was related to prejudice. Other comments about obstacles included having no care plan for comfort care, having to respond to very emotional family members, encountering language barriers, perceiving that the ethics committee had no power, and the inability to silence alarms.
Supports for Providing EOL Care in Critical Care Settings
Twenty-three of the 24 support questions were perceived as very helpful to the nurses (mean >3) (Table 3). The top supportive behavior was "having one family member be the designated contact person…" (item 1). The 4.57 helpfulness mean for this question was the highest intensity mean and corresponded to the highest perceived obstacle, which was about family and friends calling the nurse frequently. Support items perceived as very supportive (mean >4) that were done frequently (mean >3), which resulted in a high PSBS (15.51-13.30), were providing a peaceful and dignified bedside scene after death, having MDs agree about the direction care should go, allowing family members time to be alone with patient after death, and teaching family members how to act around dying patient (items 3, 4, 5, 9). Other support items perceived as very supportive (intensity >4) but occurring infrequently (frequency <2) were having support staff compile paperwork after a death, having the unit designed for patients to grieve in private, and having the MD meet with the family after death (items 6, 7, 10).
When support items were perceived as very helpful (mean >3) and did not occur frequently (mean <2), the PSBS was lower. For example, the support (item 18) about an ethics committee member routinely attending unit rounds had a helpfulness mean of 3.64 (very helpful), but the frequency mean was 0.64 (almost never occurs). The resulting PSBS was 2.33, which ranked 24 of 24 items. Because looking at the PSBS alone does not indicate an accurate picture of how helpful the nurse perceived a support to be, the support data in this study are organized by the descending intensity of helpfulness means (Table 3) rather than by the PSBS.
In the open-ended questions about supportive behaviors, nurses added the importance of support for families and the nurse. Support for families included nursing representation at family care conferences, providing a lounge for family respite, and a space for families to spend time with a patient's body following death. Other helpful supports identified by the participants were more MD involvement in supporting and educating family about the transition from aggressive to comfort care, help in preparing the body after death, emotional support for the nurse, and the charge nurse making the call regarding organ donation. In addition, the EOL questionnaire asked respondents to identify one thing they would change to improve EOL care. Participants' comments focused on developing consensus and coordination, providing a peaceful environment, and having palliative care guidance from MDs.
Knowledge Survey Findings
Nurses ranked cultural aspects, ethical issues, and communication concerns in EOL care as the top knowledge needs (Table 1). Nurses added comments about difficult communication with MDs. A nurse wrote, "MDs and nurses should be on the same page [so the] family is not given widely different information about prognosis and plan of care." Another nurse explained, "MDs should not 'sugar-coat' things." Additional concerns addressed the need to respect the patient's wishes in family decision making and prevent unnecessary pain and suffering.
The greatest concerns for the nurses in this study, as in the Beckstrand and Kirchhoff study,20 were about family issues. Obstacles to providing effective EOL care included families not understanding or accepting the patient's prognosis, what aggressive lifesaving measures mean, overriding patient wishes, and nurses having to deal with angry and conflicted family members. Critical care nurses have a fast-paced work environment in which their understanding, knowledge, and decision making may be several steps ahead of family members' ability to grasp the EOL situation. Communication with family members experiencing a crisis in EOL situations is challenging, and they may find it difficult to understand and absorb information.18 Nurses' responses to the survey indicate that they would like a family member to be the designated contact person.
The hospital could develop a guideline to have a designated family member be the representative for other family members in both providing and requesting information. Although this approach may be less effective for families who have conflicts, having an expectation for the channel of communication will facilitate a clearer communication process for many families and reduce the stress of many requests for information to the nurse who is providing care.
Nurses indicated that family members do not understand how lifesaving measures may mean additional pain and suffering for the patient. The nurses would like to see more education for families about prognosis and potential consequences of lifesaving measures such as an explanation of what is involved in a full code procedure. Nurses also perceived that providers in some situations have difficulty recognizing the dying trajectory of patients and the futility of lifesaving measures. In these situations, there is tension between the medical model that emphasizes cure and the nursing model that emphasizes care and comfort. A philosophy that values cure above comfort contributes to perceived obstacles such as (1) the nurse not having enough time for EOL care because of being consumed with carrying out lifesaving measures, (2) not allowing a natural death, (3) inaccurate optimism about survival, and (4) the perception that MDs do not value the nurses' opinions. Nurses were also concerned about providing a peaceful environment for EOL care; they indicated that poor unit design did not allow for privacy. In the time since the study was conducted, the adult ICUs at this institution have been remodeled to feature individual rooms that better accommodate families in all situations.
Many of the obstacles that had a high PIS could potentially be reduced through having a completed advanced directive (AD) that specifies the patient's preference for EOL treatment. Ideally, an AD is completed with the individual, a qualified professional, and the patient's family and/or desired kinship networks prior to a hospital admission. However, the reality is that in the crisis of life-threatening illness, it can be difficult to determine the patient's preference. Also, family members who have not previously become familiar with the patient's preferences may have difficulty deciding on the appropriate goal of care for their family member.
Items that nurses perceived as very important (intensity >4) but occurred infrequently (frequency <2) need to be addressed because there is a discrepancy between what nurses believe to be helpful and what actually happens. Nurses would like support staff to compile paperwork after a death so that they can focus on meeting the needs of the grieving family. Nursing administration may be unaware of how nurses perceive completing the paperwork surrounding a death as an obstacle to quality EOL care. Although it is not reasonable to expect to staff for such occurrences, particularly in these trying economic times, supervisors could solicit nurses and clerks from other units to come and assist for a short time. Another support that nurses identified in the study as important but occurring infrequently was a place for the family to grieve in private, which has been accomplished with the remodeling of the unit. Also, nurses would like MDs to talk with the family after a death. Although this is a standard of care, the nurses in the study perceived that MDs rarely spoke to family members following a patient's death (frequency = 1.84). Interdisciplinary communication between leadership in nursing and medicine is needed to ensure that this standard is being met.
In regard to knowledge needed for providing effective EOL care, nurses identified cultural issues as the most important knowledge need. The patient population at this institution is highly uninsured, primarily low-income, and diverse in racial, ethnic, and/or religious backgrounds. The nursing staff is primarily of European descent. The nuances of the complicated health care environment, particularly in critical care settings, along with the difficulty of decisions surrounding EOL contribute to challenging communication. The lack of adequate knowledge about culture, race, ethnicity, and/or religion becomes an obstacle to effective EOL care. Providing nurses with the education, skills, and knowledge to build relationships across these cultural differences could increase nurses' skills for supporting ethnically diverse families when their loved one is having an EOL experience.
Participants identified ethical concerns as their second most important knowledge need. Education and discussion of ethical issues in EOL care can potentially increase both the recognition of difficult ethical challenges and help share the burden of ethical conflict. When nurses learn how to apply ethical principles to resolve ethical problems encountered in EOL care, they can move toward a clearer picture of "the right thing to do" and "who decides." In addition, the ability to analyze ethical problems (1) provides rationale for supporting care recommendations to other health care team members, (2) leads to advocacy for what is best for the patient and family,18 and (3) reduces moral distress of nurses.21
Implications for Practice, Education, and Research
Study findings support the need to integrate palliative care approaches into critical care settings, consistent with the initiatives of IPACC and ELNEC. Critical care nurses need more knowledge, skill, and a sense of cultural competency in communicating with patients and families about prognoses, limits of aggressive treatment, and lifesaving measures. They also need institutional support for their role as advocates for the patients and their families at the EOL. Families and patients need clear, direct, and consistent information to make EOL decisions. The nurse has an important role to play in fostering communication, which will contribute to a more humane environment for the patient receiving EOL care in critical care units. (See Table 4 for suggested strategies for improving the delivery of EOL care in critical care settings.)
Nursing leadership has a responsibility to create a supportive environment for evaluating the quality of EOL care. One recommendation is to establish an interdisciplinary, collaborative work group to develop hospitalwide EOL care plans that integrate palliative care. This includes adopting an EOL care philosophy into the critical care setting. Nurses should also use evidence-based literature, institute policy, and apply professional standards for initiating quality approaches to EOL care. All health care professionals need to promote discussion of ADs with patients who have decision-making capacity, their families, and kinship networks. However, it is also important to initiate outreach to people in community settings to help them to consider their preferences before a health care crisis occurs.
Study findings indicate the need for strengthening educational strategies to prepare nurses for the challenges of providing EOL nursing care. In response to nurses' perceptions about barriers to and supports for EOL care and their identified knowledge needs, the researchers made recommendations for strategies to improve EOL care in critical care settings. First, the researchers presented findings to the EBNP Committee in the hospital, followed by presentations and dialogue with other leadership groups. In addition to providing information, educational initiatives need to include a reflective component to be more effective. A newly formed workgroup including representatives from the EBNP Committee developed a pilot project in one of the critical care units to increase the knowledge and skills for nurses. Nurses and staff from other disciplines will be invited to complete selected online ELNEC modules from the areas that were identified as the most important knowledge needs in the survey. After each module, a dialogue session will be led by a nurse to discuss new learning, questions, and challenges identified by participating nurses and interdisciplinary staff. The planned dialogues will provide an opportunity to reflect on the meaning of the new knowledge and its relevance to practice.
Future research initiatives should explore effective strategies for responding to cultural barriers or obstacles, given the context of a multicultural community with diverse languages, religions, and socioeconomic backgrounds. Intervention studies that evaluate communication strategies in working with families who have a relative having an EOL experience are also needed. Another area for research is the evaluation of patient and family outcomes and nurse satisfaction following the implementation of EOL care plans.
Nurses must strengthen their role as liaisons between the patient and other health professionals to promote quality EOL care. They need to advocate for the integration of a palliative care approach, such as the IPACC model into critical care settings. This model emphasizes comfort and decreasing suffering while improving the overall quality of life for the patient. Integrating Palliative and Critical Care requires education and a new way of thinking for all involved. Physicians, nurses, and organizational leaders need to collaborate with patients and families to improve EOL care. Nurses should lead the paradigm shift that supports IPACC.
The authors thank Michelle Noltimier, nurse manager, the nurses who participated in the survey, the EBNP Committee, and the graduate nursing students from Bethel University for reviewing the literature. They also thank the Minnesota Nurses Association Foundation, which provided funds for the study, and the authors' institution for their contribution of professional time and administrative support to complete the study.
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