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Weekly UpdatesA 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:
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:
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:
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:
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:
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:
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.
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:
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."
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