Nurses' experiences in giving bad news to patients with spinal cord injuries.

Abstract: Nurses, as well as patients and their families, have unique communication needs when a patient has suffered a spinal cord injury. This qualitative study used grounded theory methods to describe how nurses working on an acute spinal cord unit manage this sensitive situation. Twenty-two registered nurses participated in focus group interviews designed to elicit their experiences with patients and their needs as healthcare professionals. Five major themes emerged from analysis of the data: being the bearer of bad news, strategies used by the nurses to give bad news, the role of the patients, the role of the families, and meeting the nurses' needs. The findings indicate that nurses are placed in a position of being the bearers of bad news; it is not always possible or even desirable to avoid the situation. To maintain the patients' hope and preserve their own integrity, nurses must develop strategies to address the patients' needs.

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Giving patients bad news is always difficult. In the past, healthcare professionals decided what information patients should be given; today those paternalistic practices have been replaced by beliefs that patients have a right to know about their condition. (17) As well, increasingly informed and aware consumers have challenged health professionals' control of information and are demanding a more active role in treatment and decision making. (1) These changes have recognized the needs of consumers but have not mitigated the problems of being the bearer of bad news, which has long been recognized as an unpopular and stressful responsibility. Literature on delivering bad news testifies not only that it is difficult but also that it often is not done very well. (3,28)

Informing patients and their families of bad news about their diagnoses or prognoses has generally been considered to be the province of the physician; frequently however, nurses are intentionally or inadvertently involved. As such, many issues arise that require skilled communication, but these issues have not been adequately explored. Healthcare professionals have been passive in recognizing the need for more skill training in this area and for research to inform their practice. This qualitative research study explores this sensitive area from the perspective of practicing nurses.

Literature Review

Empirical studies on delivering bad news are limited. The majority of the literature in this developing area relates to cancer care, where delivering bad news is a common occurrence, (5,12,16) and is from emergency departments, where relatives are frequently informed that a family member has just died. (6,26) Both medical and nursing literature have practical recommendations that can serve as guidelines for when delivering bad news. (2,3,9,10,22,24) Ptacek and Eberhardt (20) reviewed the medical literature on breaking bad news and identified major communication strategies that focus on the setting and the delivery. These guidelines are helpful, but much of the literature is anecdotal and lacks an empirical base. (20)

Research exploring the role of nursing in disclosing bad news is limited and has focused on identifying nurses' concerns (11,14) and uncovering beliefs about the role that nurses do and could play in informing patients. (4,25) In practice, nurses may not be included in the decision to inform patients of a terminal diagnosis or may not be present during the delivery of this information. (11,14) Nurses are needed during these difficult times because, as Morrisey (14) noted, simply telling patients their diagnoses or prognoses is not enough; patients need time to develop an awareness of their situation. As their awareness develops, patients rely on nurses to interpret information. If nurses themselves are not adequately informed, then their credibility is jeopardized. (14) The nurse's role in delivering bad news is important, but there has been little systematic assessment of what nurses do in these circumstances and how they feel.

The reaction of the patients is an important aspect of delivering bad news. Studies of patients with cancer (14,15,27) have found that when patients are given news about their diagnoses, they may not always listen or fully absorb the implications and may selectively ignore parts of the message. Quill and Townsend (21) indicated that the extreme emotional reaction that some patients experience after receiving such bad news leads to cognitive distortion and affects the way that individuals understand information. Cognitive distortion or distortion in thinking may account for the discordance between the physicians' and patients' perceptions of disclosure. (28)

One major difficulty recognized in giving bad news is knowing how to appropriately respond to and manage the patients' emotions, including anger, sorrow, and distress. (2) it has been suggested that healthcare professionals may feel guilty about the outcome, have unexplored personal issues, or feel uncomfortable in providing emotional support. (3) Some authors (3,9) provided examples of how to improve skills in this area. Parathian and Taylor (18) described role-play as one method of teaching nursing students to deliver bad news and respond to patients' emotions.

Because research on nurses' roles in delivering bad news is relatively new, qualitative studies are helpful in exploring new areas and different contexts. (19) Spinal cord injuries provide one context in which the provision of bad news is common. These patients are suffering a traumatic and unexpected loss with ongoing consequences that affect every aspect of their lives. Informing a patient of the prognosis is a challenge to health professionals, and little guidance is available. (13) Most studies of patients' reactions to spinal cord injury have focused on later phases of recovery and rehabilitation, rather than on immediate reactions, because many of the patients are acutely ill. (23) Because nurses caring for patients with spinal cord injuries have first-hand knowledge of patients' and their families' reactions to bad news, they have important experiences that may be helpful in informing nursing practice. This study sought to explore nurses' perceptions of their role in delivering bad news in an acute spinal cord injury unit and to describe their experiences, difficulties, and needs as professionals.

Methods

Sample

Twenty-two registered nurses (RNs) on an acute care spinal cord unit in a large teaching hospital in western Canada participated in this study. Most of the patients cared for by these nurses had sustained traumatic spinal injury, but some patients had spinal cord tumors. Nurses were recruited for the study through posters placed on the nursing unit and by word of mouth.

Procedure

Nurses were asked to describe their experiences in giving bad news to patients and to discuss their underlying concerns. Focus group interviews were planned; working schedules kept most of the groups to 2 to 3 individuals. One group had 7 participants, and one nurse was interviewed alone. Interviews were conducted on the nursing unit during the nurses' break times. The principal investigator led the focus groups. A recorder was present for the group with 7 participants but was not able to be present during subsequent sessions. In the large group the more senior nurses were more vocal, but in the smaller groups, seniority and age did not markedly affect input. The interviews were planned for 1 hour, but the demands on the nurses' time kept most of the interviews to 30 minutes. Field notes were written following all the interviews. One interview was not tape-recorded because the nurses did not want to be tape-recorded but were willing to be interviewed.

The nurses ranged in age from 22 to 54 years, with the majority of the nurses being in their 20s or 30s. The average time spent working with spinal cord-injured patients was 4.6 years, and the average time spent in nursing was 7.4 years.

Data Analysis

The tape-recorded interviews were transcribed verbatim. Data from each interview were analyzed for themes and then organized into major categories that addressed the underlying issues. Data analysis began following the first interview, and data from each interview were used to inform subsequent interviews. For example, when reactions of the families were identified as a concern, subsequent participants were asked about reactions of the families. Data collection continued until no new data emerged and the themes were saturated. Constant comparison methods as described by Glaser and Strauss (7) were used to develop the categories. Data collection and data analysis occurred over 12 months. During the data analysis and collection, the data were shown to a colleague for discussion and verification. Following data analysis, the major themes were shown to some of the participants for comment and discussion.

Findings

When the data were analyzed, five major themes emerged. The first theme centered on being the bearer of bad news. The second theme focused on strategies that nurses used to give bad news; these strategies consisted of using a standard line, timing the information, and deflecting questions. The third theme focused on the patients' role, the fourth theme on managing the family when bad news must be given, and the fifth theme on meeting the nurses' needs. The context in which nurses gave bad news reflected the nature of nurse-patient interactions and the patients' needs for information, which were both immediate and long-term.

Being the Bearer of Bad News

The first comment of many nurses was, "We don't give bad news; that's the doctor's job." They saw their role as one of providing support and education for patients and their families. However, during the focus group discussions nurses described circumstances when, in response to patients' and their families' queries, they had been the initial bearers of bad news. For example, when patients discovered they have lost sensation and movement, they often initiated questions before the physician had the opportunity to inform them of the extent of their injuries. The nurses commented that because physicians were not always available, answering patients' questions and providing information was important to maintaining their own personal integrity.