Nurses' experiences in giving bad news to patients with spinal cord injuries.
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healthcare professionals decided what information patients should be given; today those paternalistic practices have been replaced by beliefs that patients have a right to know about their condition.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.
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.
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.
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.
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.
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.
A second example was the awkward situation in which nurses were placed between patients and their families and they had to respond. One nurse described that during visits, families often asked the nurses questions about the patient such as, "Oh, is he going to walk again?" This prompts the patient to inquire, "Oh, I never thought of that; am I going to walk again?" This nurse described how awkward she felt in these circumstances and how she modified her approach to meet the patients' and families' needs for information:
You're standing there with six people looking at you, and they can tell. They can totally tell you're just lying through your teeth when you say, "Oh well, we don't know anything right now." So you just sort of start spewing out things [saying anything] to get out of the situation. And I'm sure they can tell and so I just stopped doing that and just started talking to them.
Nurses observed that frequently patients did not understand all the implications of a diagnosis of spinal cord injury. The nurses indicated that the terminology used by the physician may have been complex, the method of delivery may not have been conducive to further inquiry, or the patient may have been too ill to understand. Because the lifestyle changes associated with spinal cord injuries are so profound, time is required for the patients to assimilate the information or, in the nurses' terms, to have it "sink in." One nurse explained:
What I find when they are first injured most of the time they can't accept that this has happened. And so no matter what they are told by anybody, it doesn't sink in. So I honestly find that they'll start talking about things more later on down the road.
The nurses' day-to-day involvement with these patients meant that they were close at hand when the realities associated with their injuries sank in. Situations that required nursing care, such as the patient's first bowel movement in bed, being assisted into a wheelchair for the first time, and repeated catheterizations highlighted physical limitations. Patients developed awareness that these difficult circumstances might be permanent and began to ask questions such as, "Will I always be doing catheters?" "Will this ever stop?" "Will I ever be able to feel my bowels again or will I be able to pee?"
If the nurses anticipated the patients' concerns, they were able to mitigate the effect of bad news by informing patients what to expect and why they were receiving personal care. However, sometimes the questions were unpredictable and occurred at awkward times. For example one nurse recounted that in the middle of giving care "the patient looks up at you and says, 'So when am I going to walk again?'" These were sensitive situations and the nurses reported having to think quickly to frame an appropriate response.
Strategies Used to Give Bad News
The following strategies were used to give patients bad news: using the standard line, timing the information according to the patients' needs, and deflecting the patients' questions to others. The strategies assisted the nurses as well as the patients.
Using the standard line. Several nurses commented that despite any information that patients have been given, many leave the acute care area believing that they will walk again. A primary concern for the nurses was to maintain the patients' hope. Therefore the nurses' major concerns about answering questions included fears about destroying hope, upsetting the patients, or even triggering an episode of verbal or physical abuse. Consequently, nurses were cautious about both the content and the delivery of messages that they gave and about giving accurate information. To assist them in giving information, the nurses developed a standard line or generic line: "I have a generic line that I always say: that they should talk to the doctor about it and that I'll give them what I know."
This standard line provided patients with information along with emotional support and enabled the nurses to be prepared for many awkward situations when the patients pressed them for information. To promote the patients' acceptance of their current limitations and still maintain hope, the standard line often had dual components, that is, good news being given along with bad news. By framing the standard line in terms of current limitations, the nurses were able to maintain their own integrity and give patients a message about the reality of their illness or injury. By framing the standard line in terms of hope, the nurses were able to keep patients motivated and minimize their emotional reactions. These two examples of standard lines clearly reflect these two components:
This is what you need to do to become independent; I will help you to do this. Today and tomorrow and maybe next year you'll be in a wheelchair but then again maybe you won't. Right now you can't move and that's pretty obvious to you. And I always say from what we've seen in the past, people with your type of injury are not walking right now but don't lose hope. I always tell them to keep that hope because there's research going on and so I always just say the same thing to everyone.
Learning to develop a standard line was important for communication between the nurses and patients. Different nurses used different lines, but all contained a message of hope framed in terms of the reality of current limitations. Although the standard line was helpful, the nurses indicated that the best approach was to be as honest as possible in answering patients' questions and to give consistent information. At times this was difficult, and the nurses commented that they never told anyone directly, "You will not walk again." Instead they focused the patient on the individual nature of recovery, the hope for a good quality of life, and stressed the available leisure and career options.
In general, the nurses waited for the patients to initiate inquiries about their conditions. When patients wanted more information, they cued the nurses by asking questions or prompting them. By learning to read these cues and prompts, the nurses were able to reinforce the message about the reality of the patients' circumstances:
They'll prompt you by asking questions. [For example], "Can you tell me a bit about my injury and what will my future look like?" You just give them what their future will look like and you just answer the questions [as] best as you can and tell them everybody is different and this is what commonly can occur. One of the things I find a lot of people ask me is "Am I going to get more motor or more sensation back?" and I say, "Well that's something [that's] very individualized. It can take up to 2 years for swelling and healing to take place and then you know where you're at." I never say its definite right now for you with how high your injury level is.
Timing the information. In answering patients' questions, nurses tempered the information by their perceptions of the patients' readiness to receive information and their capacity to understand. An effective strategy was to give small amounts of information and repeat it. Repeating the information helped to reinforce the reality of the patients' circumstances, but also helped to reinforce the message of hope. Maintaining hope helped to keep the patients in a positive emotional state, which meant they were easier to work with, and to prepare them for the move from acute care to rehabilitation.
As the patients' physical conditions progressed, some nurses initiated discussion to elicit the patients' feelings about their physical conditions. Some nurses felt more comfortable than others in initiating this type of communication. Many nurses felt that they were too pressed for time to explore patients' concerns or to assist them in adjusting to the implications of their conditions. Talking to patients about their outcomes meant making this a priority among all the demands on the nurses' time:
When I'm giving a bed bath, that takes a good 10 minutes. [To find out how they are feeling I ask] "So how are things going?" I just try to talk to them because you're there at the bedside; you can wash an arm and talk about something at the same time. Others [nurses] don't always do that.
Deflecting the questions. Nurses referred patients' questions to other healthcare professionals if they believed that others could provide more information and if they felt uncomfortable with the patients' questions. This was particularly true with sexual functioning. Some nurses saw referring patients' questions to others in a positive light because the patients received more in-depth explanations and clarifications about their conditions. However, other nurses indicated that deflecting questions sometimes gave patients false hope about their conditions. For example, in discussing the role of the physiotherapist, patients would "latch" onto the idea that the physiotherapist could make them walk as opposed to teaching how to manage their limitations, "Oh good, the physiotherapist makes me move. OK, get them in here; I want to move."
The Patient's Role
Despite being informed of their diagnoses and prognoses, patients would often seek validation of their symptoms and the eventual outcomes. One strategy appeared to be used to test or tease the nurses:
Some of them have a really kind of a warped sense of humor. You'll go to touch their leg and you know they can't feel or move and yet they'll go, "Oh, you're hurting me!" You know then they're just looking for your reaction.
Patients used other strategies for obtaining information such as asking different nurses the same questions and comparing the replies, or they would ask the same nurse the same questions repeatedly. The nurses indicated that they had to be careful about the terms they used, especially if the patient had a tumor rather than a traumatic injury.
There's a lot to be said in the way you express yourself so if you say something that's not quite the same as the next person, they'll remember that and they'll double check. If we're querying a tumor in the spine and the patient or the family hasn't been notified yet because we don't know for ourselves, and let's say somebody would drop the word tumor. Then, of course, that patient is going to be asking every single person that comes close to the bedside what is it about this tumor.
As well as giving cues and prompts that they wanted information, patients also gave cues that they did not want any more information about their long-term prognoses. In these circumstances patients changed the subject, distracted the nurses, and asked questions at times when it was difficult to provide answers, such as when they had visitors or when the nurses were obviously busy. The following sensitive description indicates how one nurse read the cues and managed the patients' emotional reactions to bad news:
You kind of know if they want somebody around or not. If they want to be alone, they won't have eye contact anymore and they'll just shut down. And I think that's when I feel like I don't need to be here right now, I think he or she needs to be by themselves. I find if they're still angry but they're asking questions, it's important to stay and be there.
Managing the Family
Another aspect in the process of delivering bad news was the patients' families. When families indicated that they did not want the patient to be informed of his or her prognosis but demanded specific information for themselves, the nurses felt caught between a family's desire to protect the patient and the patient's right to be informed. In these circumstances nurses firmly advised the family that if the patients asked for information, they would answer their questions.
Families also required support, comfort, and recognition that they also were suffering losses associated with the patient's loss of function. Many parents had great expectations for a child's career or life that could not be realized following such catastrophic injuries, and it was difficult for families to accept that life changes would need to occur. At times families put unreasonable pressure on the patient to recover when recovery was not possible: "You know, their parents are buying them skis for Christmas and they're paralyzed from the waist down or from the neck down." Occasionally the family roles were reversed when patients did not want their families to know how upset they felt and they wanted to protect their families. The nurses' roles in these circumstances were to listen as patients expressed emotions, concerns, and distress.
Meeting the Nurses' Needs
The nurses acknowledged that being involved in giving bad news was stressful. It was a complex balancing act requiring a number of communication skills and strategies. Skills also were needed to develop both the content and the delivery of a standard line that promoted reality with the all-important message of hope. Nurses had to be knowledgeable about the outcomes associated with the different levels of injury. Some nurses reported using the patient's belief that they would walk again to focus the patient on working toward gaining independence. A message frequently repeated to patients was, "We focus on today, this is what you have today."
The techniques that the nurses used were to "put themselves in the patient or families' shoes" and decide what they would want to know in these circumstances. To defuse their own emotions, they worked as a team with others and debriefed among themselves. They also attempted to give patients good news whenever possible:
Every day there's something: You give them feedback on how they're doing. Every day there's a little step forward in their progress and we've noticed that; it's just a common thread on the ward. Every day there seems to be one more thing that either they can do for themselves or something has improved, and so you really have to tell them about it because they don't know that they're doing well.
Even though delivering or reinforcing bad news is not perceived to be their role, the realities of clinical practice indicate that nurses are involved. This study described some of the dilemmas that nurses face during this process and the strategies they use to maintain patients' well-being and meet their own needs.
The lifestyle adjustments that patients with spinal cord injuries must make are significant. The nurses in this study reported that when patients are given information relating to such profound changes, the information does not readily sink in. Patients may not understand the implications, or actively seek clarification of those implications, until they feel ready to do so. Patients also maintain beliefs that the outcome, for them, will be positive despite information to the contrary. If the information does not sink in, it can be due to differing perceptions of disclosure, differing understandings about the outcome of an injury or illness, or a lack of readiness to hear the information. This is similar to studies of patients with cancer. (14,15,27) These findings have many implications for nurses because they must continually answer the patients' questions and manage the patients' emotional responses. The nurses must assess how to deliver information that will assist the patient with the many difficult adjustments that accompany spinal cord injury.
Nurses are placed in a difficult position of meeting the patients' and their families' needs for information. Morrissey indicated that when patients do not understand technical information, nurses become the translators of bad news between patients with cancer and physicians. (14) The nurses in this study reported that, when working with patients with spinal cord injuries, their role may exceed that of translator, and they may become the bearers of bad news. It is impossible to avoid this role because the nature of their daily interactions means being in proximity when patients or families wish to have their questions addressed. The nurses stated that giving bad news is at times inescapable; they must respond to questions or jeopardize their own integrity and credibility with patients and their families. Many nurses found this role difficult because of underlying concerns about patients' reactions, fears about misinforming the patients, and beliefs that maintaining hope was an important method of providing support. To assist them in answering patients' questions, nurses in this study developed various approaches that they believed benefited both the patients and themselves. One such approach was to use their standard line, which enabled them to be prepared to answer questions truthfully without destroying the patient's hope.
This study has determined that much of the literature on successfully delivering bad news recommends situations that are not always feasible for nurses. These include finding a quiet location with few distractions, providing privacy, having a supportive significant other present, and allowing time to elicit the patients' feelings and reactions. (3,20,27) Nurses work in situations in which delivering bad news is ongoing, has multiple components, and occurs at times when it is impossible to be prepared for the unexpected questions and reactions. After giving such information, the nurse must continue to work in close contact with the patient. Opportunities to retreat or debrief may be restricted.
Time is needed for patients to make lifestyle adjustments, and emotional responses to their injuries may fluctuate. An important aspect of bearing bad news was the nurses' skills in reinforcing the reality of the patients' circumstances and maintaining their hope so that the patients would work toward developing independence.
The initial disclosure of the information still remains the prerogative of the physician, and the nurses in this study saw initial disclosure in this way. Nevertheless, nurses could not avoid being involved. Delivering bad news becomes a part of nursing work that is not acknowledged except in an ad hoc manner. Failure to acknowledge this role and the skills required accentuates that many aspects of nursing work are vital but invisible. Lawler has found that many aspects of nursing work are invisible and this lack of visibility devalues nursing care. (8)
Nurses have limited time to engage in meaningful dialogue that will help release or explore patients' feelings. Unless the nurse feels comfortable in soliciting such reactions, many of the patients' concerns may not be addressed. The nurses indicated that they needed more skills to perform this sensitive role successfully. An important issue relates to the realistic nature of the nurses' fears about upsetting patients. If many individuals do, as the findings indicate, undergo a time of believing that they will walk again, it appears that giving them information may have only a minimal influence on this belief. Future studies of both patients and nurses would address this issue.
Data collection in this study was difficult because the pressure of the nurses' work situation limited the time for the focus group discussions. The ward may not have been the most appropriate location for in-depth discussions that are helpful in focus groups, and the focus groups were very small. It was not possible to correlate length of nurses' experiences to development of skills in giving bad news. Further research that elicits the patients' perspectives on how they were given bad news by nurses and other healthcare professionals would broaden our understanding of this issue.
Nurses are involved in the complex and difficult responsibility of giving patients bad news. An important step in making this process easier is to acknowledge that nurses do indeed bear bad news by giving nursing care or by addressing patients' and their families' concerns. Coming to terms with the multiple losses associated with spinal cord injury is a difficult and long-term process. Patients and their families need support with this process, which should be tailored to their individual requirements. Nurses also need support and open discussion of this sensitive issue.
Communication policies to support nurses when giving sensitive information to patients, together with opportunities to develop skills and strategies to assist in this process, would be helpful to nurses who face these challenges. Such approaches will facilitate the provision of patient care as well as the professional development of nurses.
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Questions or comments about this article may be directed to: Anne Dewar, PhD RN, University of British Columbia, T254-2211 Wesbrook Mall, Vancouver, BC V6T 2B5 Canada. She is an assistant professor at the University of British Columbia School of Nursing.
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|Publication:||Journal of Neuroscience Nursing|
|Date:||Dec 1, 2000|
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