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Abstract |
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• Objective To obtain a detailed picture of the experiences of family members during the hospitalization and death of a loved one in the intensive care unit.
• Methods A qualitative study with 4 focus groups was used. All eligible family members from 8 intensive care units were contacted by telephone; 8 members agreed to participate.
• Results The experiences of the family members resembled a vortex: a downward spiral of prognoses, difficult decisions, feelings of inadequacy, and eventual loss despite the members’ best efforts, and perhaps no good-byes. Communication, or its lack, was a consistent theme. The participants relied on nurses to keep informed about the patients’ condition and reactions. Although some participants were satisfied with this information, they wished for more detailed explanations of procedures and consequences. Those family members who thought that the best possible outcome had been achieved had had a physician available to them, options for treatment presented and discussed, and family decisions honored.
• Conclusions Uncertainty about the prognosis of the patient, decisions that families make before a terminal condition, what to expect during dying, and the extent of a patient’s suffering pervade families’ end-of-life experiences in the intensive care unit. Families’ information about the patient is often lacking or inadequate. The best antidote for families’ uncertainty is effective communication.
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To receive CE credit for this article, visit the American Association of Critical-Care Nurses’ (AACN) Web site at http://www.aacn.org, click on "Education" and select "Continuing Education," or call AACN’s Fax on Demand at (800) 222-6329 and request item No.1153.
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However, little specific guidance is available for healthcare providers who strive to provide support and comfort to patients’ family members while simultaneously caring for patients in the high-tech, rushed atmosphere of an ICU. Death of a patient in the ICU is a uniquely stressful experience for the patient’s family members. They have constant anxiety about the prognosis, emotional stress from making decisions related to treatment, and a sense of helplessness at being unable to prevent deterioration of the patient’s condition.
The purpose of this qualitative descriptive study was to obtain a detailed picture of the experiences of patients’ family members during the hospitalization and death of patients in the ICU. The 2 broad questions addressed were (1) what were the experiences of family members of patients who died in the ICU and (2) what were the family members’ expectations of ICU care during the time before and immediately after the death.
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Method |
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Each potential participant was sent a letter and an informed consent form and then was contacted by telephone 2 weeks later. The person reached by telephone was asked whether he or she could speak for the family or if he or she would designate someone else. Family members were eligible to participate if they were 18 years or older, spoke English, had visited the patient in the ICU, and resided within an 80-km (50-mi) radius of the hospital. The sample excluded kin of patients who were asked to consent for donation of the patients’ organs or kin of patients younger than 55 years, because issues associated with organ donation or "a life not yet lived" often complicate the grieving experience. Only 1 family member per patient was included in the focus group in order to sample a variety of experiences rather than different perspectives on the same experience. The 6- to 18-month time frame was selected to avoid approaching family members too early, when grief might be exacerbated by the interview, but still conduct the interview within a period when events were fresh enough to be remembered.
Setting
The focus groups were held in a downtown office building in a room used solely for focus groups. This setting provided a neutral area, away from the hospital where the death had occurred and where memories might linger. The room contained a large table with comfortable chairs and microphones for audiotaping and had an adjacent room where the group could be viewed via a 1-way mirror. At the beginning of each group, participants were introduced to the investigators, and the arrangements for taping and observation were explained.
Instrument
The focus group moderator followed a semistructured interview guide during the discussion. This guide was based on an extensive review of the literature on the families of ICU patients. Experts in psychiatric and critical care nursing were involved in the development and wording of items. A multidisciplinary panel of physicians, nurses, chaplains, and social workers reviewed the questions and the procedures. Topics probed were (1) families’ expectations of care providers, (2) emotional responses to the ICU experience, (3) what was helpful, and (4) how the care could have been more helpful. Before the first focus group was interviewed, the guide was pretested with experts (faculty members experienced in ICU nursing) and selected individuals, all of whom had experienced the death of a loved one in the ICU, to see if important ideas had been captured.
Procedure
The format for the focus groups followed recommended guidelines9: opening questions, introductory questions, transition questions, key questions, and ending questions (eg, all-things-considered question, summary question, and a have-we-missed-anything question). The moderator began each group with a brief introduction that provided background information about the purpose of the study and the format for conduct of the group.
Focus groups were held in the evening and were scheduled for 2-1/2 hours each. The first 30 minutes allowed time for some socializing over refreshments, obtaining the signatures on the written informed consent, and obtaining demographic data. One investigator with extensive experience in leading groups (AH) served as moderator and another (KTK), in compliance with directions from the institutional review board, sat in the room with any family members so that she could accompany anyone who was overcome with emotion and had to leave the room. A third investigator (LW) observed from the adjacent room and made content notes to supplement the tape.
After the focus group, the moderator spent time with family members who had additional comments or questions. When we thought that longer-term support was needed, referrals were made; participants were given a list of a selection of therapists or support groups.
Audiotapes from each focus group were transcribed word for word. To verify tentatively identified themes and/or expand or redirect the moderator’s questions, we reviewed the results of the first focus group session before the next 3 groups were held. Analysis of the focus group interviews was done according to the guidelines for content analysis described by Morse and Field.10 The interviews were read independently by each of us to gain an overall sense of the tone and content of the material and to identify major topics. Two of us are nurses with critical care experience (clinical and administrative), and 3 of us have a background in psychiatric nursing and experience in grief, loss, and family issues. Four of us have doctorates.
We compared impressions and developed a list of key ideas supported by words, phrases, and actual quotes that captured the general content of the focus groups. Then we assigned category labels to the topics/themes identified. As analysis continued, the number of categories was reduced. Throughout this process, detailed notes were maintained on categorization decisions to facilitate further coding and provide a means to verify our conclusions. The resulting themes/categories are not mutually exclusive, because uncertainty pervaded all aspects of the experience. The computer program QRS NUD*IST, version 4.0,11 was used to assist in the management of qualitative data.
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Results |
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The relationship of participants to the deceased family members varied; 6 were spouses, 1 was a son, and 1 was a granddaughter who had served as the family communicator during her grandmother’s hospitalization. Two of the participants were men, and 6 were women. Ages ranged from 38 to 84 years, with a mean of 59 years; all participants were fairly well educated (mean years of education = 14.6). All were white, were members of the Latter Day Saints Church, and had visited their relative on a daily basis. Length of care in the ICU until time of death varied from days (2 patients) to weeks (3 patients) to more than a month (3 patients). Participants’ anticipation of and past experiences with death are presented in Table 1
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Regardless of the age or health problems of the patients, none of the participants had anticipated a need for ICU care for the patients. Patients were hospitalized because of exacerbation of a preexisting condition or the need for further treatment. Once there, patients and their family members were caught in a vortex of events that led to the ICU.
This concept of a vortex provides a metaphor for the cascade of events that exacerbated the distress of these families throughout the entire ICU experience and beyond. It encompasses the sense of uncertainty and lack of control associated with not knowing what to expect, the fast pace of change, the frequently revised definition of the patient’s health, the decisions family members were asked to make, and the array of faces, machines, and "foreign" language encountered in the setting.
Uncertainty. The stories these family members told had a pervasive theme of uncertainty, stemming from a number of sources. The uncertainty had its roots in the inherent tension between the capabilities of modern medical care (at its technological zenith in the ICU) and the philosophical stance of death with dignity and the obligation to honor individual choice.
Uncertainty overlaid and colored the entire experience. Although outcome or prognosis might be considered the major source of uncertainty, additional sources exist even when a patient’s outcome becomes clearer. Uncertainty was present as family members struggled to resolve the dilemma presented when the use of technological measures to preserve life conflicted with the patients’ previously expressed wishes. It was present in the family members’ effort to protect the patients from unnecessary invasive measures while ensuring the best possible care. Even when a patient’s condition was rapidly deteriorating, family members experienced uncertainty about decisions made before the terminal condition, what to expect during the dying process, and the extent of any suffering on the part of the patient. Their attempts to resolve this uncertainty were often thwarted by lack of or conflicting communication from healthcare providers. And in some instances, family members continued to experience uncertainty as they reflected on their loved one’s death and struggled to adjust to this loss.
Dilemma: Technology Versus Individual Choice. In most instances, some discussion had occurred before the current crisis about the patient’s attitude toward extreme interventions to maintain life. At times, however, the family members had to choose between continuing the technology or honoring the patient’s wishes to avoid artificial means to survive, a decision they did not feel equipped to make.
One man had told his wife, "... [I]f I am physically able, but I have lost my mental facilities, ... I would choose not to live, ... [but] I would like to live to see these little kids [grandchildren] grow up."
Another family member related that one of the last things his mother had said to him was "If I can’t be right, don’t keep me; let me go." However, this 78-year-old woman was maintained on life support, with family approval, until her physician thought nothing further could benefit her. Life support was continued partly because the participant’s father "was not ready to accept what was going on" but also because both physician and family wanted to give the patient every chance "to see if her heart was strong enough."
Even when wishes had been discussed, family members found it difficult to accept and carry out those wishes. One wife said, "I knew [he] did not want to be on life support systems.... I made us up a living will every year, ... but when you’re actually faced with the reality, [that is] something! ... You have to go with the decision, ... [but] I would have taken [him] under any circumstances."
A husband described the process as he and other family members reached the decision to discontinue life support for their wife and mother: "[My wife] was very meticulous;... she was very, very concerned that she was going to be disfigured and going to be a burden on the family ... We said we can deal with the personality change, we can deal with everything, but what is best for [her], what would she want to do?"
Even months after the death, family members continued to wonder whether the right decisions had been made. One woman said, "I wonder if I would have said, Well, let’s take him off for just 12 hours and let this medication work. ... There are a lot of ifs that you think of after ...."
Slomka12 suggested that decision making in the ICU follows a "cascade" pattern rather than the more controlled and reflective pattern observed in other areas of practice. Families often must make decisions without time for consultation and adequate understanding of the implications. In addition, the very purpose of an ICU is to "maximize life-sustaining technology."13 Putting faith in technology in some instances may foster denial, as well as encourage "magical thinking" and a hope for miracles among both healthcare providers and families.14 One bereaved spouse only half facetiously mused if her husband could be cloned like "Molly" the sheep. Fears about pain, suffering, isolation, and giving up hope prematurely were all part of what families struggled with in the high-tech ICU environment.
The Responsibility to Protect. More than 2 decades ago, Hampe15 described the needs of grieving spouses in hospital settings. Along with the need to be kept informed were the needs to be with the dying person and to be reassured of the patient’s comfort. Jamerson et al8 described this need as "hovering" and defined it as "an initial sense of confusion, stress, and uncertainty in the family members while they wait to see the patient in the ICU; to learn the diagnosis or results of surgery; and to comprehend the prognosis."8(p471)
In our study, although all family members reported a strong desire to be with their loved ones, we noted that "hovering" also took on a protective quality. One wife observed, "I didn’t even want people going into his room. ... with any kind of thought [that he might die]; I thought he might read from them. ... " In other instances, family members described how they had to intervene to protect the patient from extreme measures or to prevent further procedures by physicians unwilling to concede the futility of such interventions.
Lingering doubts and the thought that they may have failed in their responsibility to protect led to expressions of guilt, regret, and anger among the participants. A wife, whose grief was still permeated by shock and anger 16 months after her husband’s death, expressed the helplessness that can result from uncertainty and lack of understanding. She observed, "Here you are, you are so medically untrained, you have to put your faith and trust in people you have never seen and you don’t know. ... If they said ‘Should we do this or do that?’ I didn’t know what to tell them to do." Her regrets and frustration were evident in her observation, "If I had paid a little bit more attention to what was being said, ... then perhaps there was something else that might have been done."
Another wife, whose husband had died 15 months earlier, was still wrestling with feelings of anger and guilt. Her anger stemmed initially from unexpected complications that led to her husband’s transfer to the ICU. Because she was not informed that her husband had been returned to his room, she was not there when he vomited, aspirated vomitus, and was transferred to the ICU. She thought that if she had been there, she might have prevented the aspiration, and thus the ICU stay and eventual death.
She expressed that she had paid the cost of not hovering: "My whole anger and sadness is, ... I can just visualize him asking for me. ... [If] I had been there ... and helped him, or somebody had, ... [but] he was all alone." The part of the experience that continued to haunt her, however, stemmed from a lack of communication and understanding of treatment: " ... I wasn’t aware that they had put something in him to keep him completely paralyzed, and I am sitting there hour after hour holding his hand and saying, ‘Squeeze, honey; just wiggle a finger if you can, just anything.’ If he could hear me doing that ... I just think of the frustration, and no one ever told me, none of the nurses ever said, ‘He can’t move a finger ... ’ "
Negotiating the Vortex
Communication With Healthcare Personnel
According to participants, communication was one way to help the family. Many unresolved questions and concerns expressed by family members were related to the quality and timing of communication that occurred between the family and healthcare providers. Conversely, lack of communication contributed to the frustration and uncertainty experienced by family members. The numbers of physicians and residents providing care and the difficulty in knowing when a physician would be present to answer questions compounded this problem.
One wife observed, "I felt like [he] had phantom doctors." Another noted, "You sit around waiting for the doctor to come in and tell you something ... They say, ‘I will talk to you later,’ and ... you don’t know when later is, ... so you don’t dare leave."
These same feelings of frustration and bewilderment were shared by another wife, who said, " ... [T]here wasn’t communication like I would have liked ... I never saw the doctor come around ... I did finally ... happen to run across him in the hall." This woman recounted how she was not even informed that a third surgery was planned for her husband.
Physicians’ honesty was valued, and clear explanations about what had happened during surgery or other treatments seemed to help family members reconcile themselves to the loss of the patient. In one instance in which a serious mistake in treatment had been made, the physician’s honesty in acknowledging the mistake and managing the sequela greatly helped the patient’s wife deal with the consequences.
A son related that the physician told the family about possibly doing more surgery but then made the decision not to. "Later [the doctor said] he wished he had gone back in, ... but you know, you have to make those decisions, and ... we feel very good that he tried everything he could do."
Nurses and physicians who went out of their way to be available to family members were valued for their genuineness and for not leaving family members with uncertainty. Family members’ confidence and satisfaction with care was undermined, however, when the major players (physicians and/or nurses) did not communicate directly about procedures and a patient’s condition.
One wife said, "He [the surgeon] had done the emergency surgery, but it was like he didn’t even recognize [my husband]; ... he didn’t own any responsibility for [her husband’s condition]." Another wife echoed these feelings as she recounted how her information about her husband’s surgery came almost by accident and how she and other family members insisted in vain that this final surgery not be performed. In another instance, a wife had thought for a while of suing over perceived negligence when open discussion had not taken place.
In general, family members complained of having to wait for physicians to give them information, not wanting to leave for fear of missing a physician, or having to relate to too many physicians. Most family members expressed at least some desire for more time and communication with physicians about what to expect in terms of treatment and the patient’s prognosis. This finding is supported by the conclusion of Jacob16 that because many decisions in terms of treatment are made incrementally, family members need access to information on a frequent basis.
In some instances, family members were satisfied with decisions about treatment but continued to be unhappy about the way decisions were made or the way family members were informed about the decisions. Problems with decision making and communication are among the most frequently mentioned problems in articles on end-of-life care. The most important concerns for family members are who to contact, how to access information, and who to turn to for emotional support and compassion.2,8,17,18
The family members in our study appreciated communications that assisted them in making decisions and reduced uncertainty, such as having physicians and nurses show warmth and personal concern and be open and honest and express confidence that all that could be done was being done. For the most part, family members had expectations that physicians should be the source of information about a patient’s status and had the most to say about both good and poor communication with physicians. When multiple physicians were involved, the chance for a breakdown in communication was greater.
Communication With the Patient: Opportunity for Good-byes. An important part of the grieving process begins with "letting go," and being able to say goodbye is an acknowledgment that a patient’s death is imminent. Feeling that they had had a chance to say good-bye was important to the family members in our study. Nurses facilitated these good-byes not only by bending or ignoring visiting rules but also by helping family members recognize indications that the patient probably knew the family members were present, even when the patient could not respond.
One participant said, "... [We] needed this, our grandchildren especially needed that moment." When multiple alarms went off, "The nurse just stepped in and said, ‘Don’t worry; she is just acknowledging and she is trying really hard to stay here.’ So I really believe she did know and she was a part of that ..."
Regrets lingered about the missed opportunity to say good-bye when patients were unable to respond because they were either comatose or sedated. The wife whose husband was hospitalized initially for a minor surgical procedure and then was sedated and paralyzed in the ICU said, "I gave him a kiss on the cheek and said, ... ‘I will see you when you come back up.’ So there were no good-byes ... So I have this real hard time going back to it ..." When possible, in instances such as this one, the ICU nurse may wish to offer a chance for a 2-way conversation between the patient and the patient’s family members before the medication is administered, because that could be the last chance for them to say good-bye.
Leaving the Vortex: Trajectory of Adjustment
For the family members in our study, saying good-bye to their loved ones was still going on. The need to tell us the "story" of the patient’s illness, treatment, and death was, of course, catalyzed by the nature of our questions and interest. The family members were replete with details of their experience that they wanted to make sure we heard, almost like a memorial or tribute to their loved one. Our ability to listen to these stories may have constituted implied empathy for family members in relation to their past stress and acknowledgment of their continuing grief, loss, and sense of vulnerability.
In some instances, the ICU experiences and/or the unexpectedness of the death influenced the trajectory of a family member’s adjustment to the loss of the patient. A wife whose husband had survived surgery and an extended hospitalization 15 years earlier refused to believe that he would not recover from this episode: "I never thought I would lose him, ever ... I think maybe [they] told me he was terminal, but I preferred not to believe." Sixteen months later, her loss was still fresh, and she had difficulty talking about it.
The wife who did not realize her husband could not respond because of the drugs used to treat him in the ICU continued to relive her regrets and anger 15 months later, although she reported, "I am trying real hard to let it go, and I think I am about there."
Regardless of the expected or unexpected nature of the loss, however, most family members were in some ways reconciling themselves to the death by knowing they had made the choices their loved one would have made for himself or herself. Family members were also finding comfort in remembering the patient as he or she was in life and knowing he or she was no longer suffering. A wife said, "You have faith that ... he is somewhere with a healthy body and doesn’t have the edema ... He is up there playing golf and having a ball."
Discussion and Implications
We used a focus-group approach with the rationale that participants would add to and build upon the information supplied by other members in the group. This approach was used in a study of ICU nurses’ experiences of end-of-life care19 in the ICU and was effective both in obtaining information and in validating individual impressions and experiences within the group. However, our use of a focus-group approach resulted in a process that more closely resembled individual interviews conducted in a group setting, with participants taking turns recounting their experiences and only occasionally building on each other’s comments. The small size of each group (1 to 3 members) and the open nature of the initial question ("We are interested in your experience ...") no doubt influenced this response. However, the nature of the topic and the fact that the event of interest was a onetime, unique experience in the lives of the participants elicited a narrative, storytelling approach.
Our original purpose was to identify, through the eyes of family members, "good end-of-life care" for patients and patients’ families in the ICU. Although family members told us when they perceived a care provider had either gone out of his or her way to be of assistance or had failed in some way to communicate adequately, they accepted the care given as good or at least adequate and made few suggestions for improvement. Most family members were still engaged in a self-reflective process of reviewing and reliving experiences associated the loved one’s death. Medical decisions and the patient’s degree of pain or suffering were still being scrutinized at the time of the focus groups. Thus, our findings are more a description of the emotional chaos the participants experienced while their family members were in the ICU. This shift in focus seemed in keeping with what family members selectively remembered as important to their own grieving experience and includes their search for understanding, explanations, and eventually integration and accommodation to the death of their loved one (Table 2).
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Implications for Interventions
Nurses respond to elements of loss in many care-giving circumstances.21 In the ICU, a patient’s family members not only experience the loss of a loved one but also must cope with the traumatic circumstances leading up to and surrounding the death. Although our purpose was to understand the perspective of patients’ families, implications for developing theory-based interventions can be drawn from the results of our study and those of other investigators.
Understanding the Vortex
For nurses to become better advocates for patients and patients’ families experiencing the transition to end-of-life care, understanding the situation from the perspective of the family members is crucial. The emotional turmoil that accompanies having a family member in the ICU has been well documented.8,19,22,23 These emotional responses include despair, anxiety and fear of the unknown or unexpected, worry, sadness, exhaustion, depression, anger, frustration, guilt, and relief and joy when the patient’s condition improves even slightly. The family members in our focus groups reiterated these intense emotional sequelae that accompany uncertainty, lack of control, and regret over not being able to protect a loved one from suffering and death.
Goals of Intervention. On the basis of our study, therefore, an outcome indicator for families’ satisfaction with end-of-life care would be that the families have no residual regrets about decision making involving either the course of treatment or a decision to withdraw or withhold treatment. The belief families told us that supports the no-regrets outcome is that they are assured "that everything that could have been done was." A second outcome, related to no regrets, is having an opportunity to say good-bye and being reassured that a final message of love was heard. McClement and Degner24 succinctly summarize that the intent of nursing interventions with patients’ families is to provide information to reduce the potential for regret.
Theoretical Considerations. An underlying purpose of our study was to identify perceptions of patients’ family members that could be translated into interventions used in the ICU. Hence, theories or models that address information processing and decision making under stressful or traumatic conditions, emotional regulation, and prevention of family crisis or disequilibrium seem most relevant.
Understanding Stress Responses. In the ICU, family members are confronted with the need both to confront the events taking place and to protect themselves from the emotional impact of how those events shatter the very assumptions that have created safety and security in their lives. Horowitz25 described 2 alternating processes that occur when a person is confronted with, and struggles to make sense of, traumatic events. An emotionally laden, intrusive experiencing or reexperiencing of the traumatic event alternates with protective denial. Both processes are necessary to promote accommodation and integration of the experience into new inner schema while protecting the individual from being overwhelmed by traumatic stress.26 Using this framework, nurses can direct their interventions toward facilitating emotional control when families have intrusive thoughts and feelings or can allow more time and "dosing" of information when the families are in denial. Fluctuation between these emotional states helps explain why information may be misunderstood or needs to be repeated.
Mastery of Stress. Horowitz26 refers to the goal of reducing the impact of emotionally stressful events as "shock mastery." The assumption is that by identifying expectations about end-of-life care and facilitating the transition to palliative care, stress can be reduced, and families can more easily reconcile themselves to their loss. We are using the metaphor "entering and negotiating the vortex" to characterize these processes that unfold during the provision of critical care for patients and the meaning of these events to patients’ families.
Self-regulation Theory to Manage Uncertainty. Johnson et al27 have developed and tested a conceptual framework termed self-regulation theory to manage uncertainty involved in providing care for patients undergoing medical and nursing interventions. Lazarus and Folkman’s28 framework for explaining stress appraisal and coping and the work of Leventhal et al29 on the effects of preparatory work on sensations, among other psychological theories, are used in support of self-regulation theory. In brief, self-regulation theory assumes that patients want to know what to expect, have goals and are motivated by these goals, and can acknowledge distress and that when problem-solving approaches are used, stress can be minimized. Selection of what information to provide to patients (ie, concrete and objective) is an important component of the preparatory model.
Involving family members in decision making by frequently providing information that is as accurate as possible is a strategy most investigators recommend. Information is designed to reduce uncertainty and emotional arousal and to help families understand the unpredictable nature of the patients’ condition.
Self-regulation theory also captures the need to understand and relate to the individual’s inner schema, or "picture of situations, events, and objects." 27 Cognitive interventions are often directed toward helping a patient’s family clarify distortions and shift the emphasis from perceptions of powerlessness to seeing new possibilities for change even if that shift means accepting distressing information. By facilitating family members’ coping with the objective characteristics of the patient’s condition, emotional responses can also be managed, thus reducing the likelihood of overwhelming emotional turmoil.
Negotiating the Vortex
Communication With Healthcare Providers.
Providing information about a patient’s condition and response to medical treatment was an expressed need that often went unmet among the family members in our study. As mediators and interpreters of information, nurses need to develop skills in helping patients’ family members understand what physicians are saying and the relevance of that information for a patient’s prognosis and decisions about treatment.24 Several studies12,16,30–39 support the essential need for information when patients’ families are making decisions about withdrawal of life-supporting treatments and mechanical ventilation.
Opportunity to Let Go and Say Good-bye. As death approaches, a natural shift in focus occurs from the patient to the patient’s family.5 In order to reduce the potential for future regrets, providing opportunities for family members to say good-bye is helpful. Explaining what to expect about the process of dying and what patients may hear is a part of this process. Facilitating a family’s proximity to a dying patient7,40 and involving family members in care by allowing them to make choices help them maintain some sense of personal control. Having time with the patient even after death has occurred is an important part of saying good-bye, validating the significance of the patient’s life and acknowledging the meaning of loss to the family.6,24
Implications for Grief and Mourning. Understanding and finding meaning in uncertain or unpredictable circumstances help patients’ family members maintain emotional stability during the stressful time in the ICU and regain a sense of personal well-being after the patients die. Anticipation of loss and fear of the dying process, including concerns about pain and suffering, contribute to uncertainty and to anxiety about being powerless to help the patient.41 Accommodating the spiritual needs and values of patients’ families is now a commonly recognized intervention. Cognitive processing during and after a stressful event has been associated with physical well-being, and finding meaning is a central component of psychological healing from a traumatic event.40,42–44
Leaving the Vortex: The Trajectory of Adjustment
Story Listening and Grief.
"Story listening" has become a key metaphor for helping individuals and family members find meaning and healing in what otherwise might remain inchoate and a festering wound, often leading to posttraumatic stress.25,45–48 Although the focus groups were not intended to be therapeutic, participants often thanked us for listening, for giving the participants an opportunity to share experiences and to tell us of their continuing distress. Family members also expressed the hope that by telling us their stories, they would be helping other families.
Expressing interest in a patient as a unique human being is often accomplished through listening to the patient’s family tell stories about the meaning of the patient’s life.6 Family members interpret this behavior as being there for them. Listening and labeling what people are experiencing help with cognitive processing and with building memories that facilitate mastery and grieving rather than memories of being helpless and overwhelmed.
What the family members in our study recalled of their experiences was clearly selective for events and interactions that remained as vivid memories. By listening to the retelling of their experiences, we seemed to be validating their courage in the face of the anguish they had endured. Moreover, when family members expressed regrets about their own or the perceived mistakes of others, they were also, by inference, telling us about improving care.
For the present, we recommend focusing on orienting families to the ICU (brochures have been tried; see Brandenburg and Gifford49 and Medland and Ferrans50) and providing anticipatory guidance in relation to the need for frequent and updated information. Using self-regulation theory and cognitive models of intervention to assist families in processing and understanding medical interventions, remaining involved in the transition from active interventions to palliative care, and supporting family members’ need to believe that everything that could have been done was done remain the major foci for family interventions.
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ACKNOWLEDGMENTS |
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This article has been cited by other articles:
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  L. A. P. Watson Informing Critical Care Patients of a Loved One's Death Crit. Care Nurse, June 1, 2008; 28(3): 52 - 63. [Full Text] [PDF]
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 S. LoboPrabhu, V. Molinari, J. Pate, and J. Lomax The After-Death Call to Family Members: Academic Perspectives Acad Psychiatry, April 1, 2008; 32(2): 132 - 135. [Abstract] [Full Text] [PDF]
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 H. Shanawani, M. D. Wenrich, M. R. Tonelli, and J. R. Curtis Meeting Physicians' Responsibilities in Providing End-of-Life Care Chest, March 1, 2008; 133(3): 775 - 786. [Abstract] [Full Text] [PDF]
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 K. T. Kirchhoff and K. A. Kehl Recruiting Participants in End-of-Life Research American Journal of Hospice and Palliative Medicine, January 1, 2008; 24(6): 515 - 521. [Abstract] [PDF]
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 R. H. Savel, E. B. Goldstein, E. N. Perencevich, and P. B. Angood The iCritical Care Podcast: A Novel Medium for Critical Care Communication and Education J. Am. Med. Inform. Assoc., January 1, 2007; 14(1): 94 - 99. [Abstract] [Full Text] [PDF]
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 E. C. Meyer, M. D. Ritholz, J. P. Burns, and R. D. Truog Improving the Quality of End-of-Life Care in the Pediatric Intensive Care Unit: Parents' Priorities and Recommendations Pediatrics, March 1, 2006; 117(3): 649 - 657. [Abstract] [Full Text] [PDF]
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M. A. Lederer, T. Goode, and J. Dowling Origins and Development: The Critical Care Family Assistance Program Chest, September 1, 2005; 128(3_suppl): 65S - 75S. [Full Text] [PDF]
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 J. R. Curtis, R. A. Engelberg, M. D. Wenrich, S. E. Shannon, P. D. Treece, and G. D. Rubenfeld Missed Opportunities during Family Conferences about End-of-Life Care in the Intensive Care Unit Am. J. Respir. Crit. Care Med., April 15, 2005; 171(8): 844 - 849. [Abstract] [Full Text] [PDF]
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 K. T. Kirchhoff, P. R. Anumandla, K. T. Foth, S. N. Lues, and S. H. Gilbertson-White Documentation on Withdrawal of Life Support in Adult Patients in the Intensive Care Unit Am. J. Crit. Care., July 1, 2004; 13(4): 328 - 334. [Abstract] [Full Text] [PDF]
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S. A. Norton, V. P. Tilden, S. W. Tolle, C. A. Nelson, and S. T. Eggman Life Support Withdrawal: Communication and Conflict Am. J. Crit. Care., November 1, 2003; 12(6): 548 - 555. [Abstract] [Full Text] [PDF]
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