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To learn more about end-of-life issues in critical care, read "The Vortex: Familes’ Experiences With Death in the Intensive Care Unit" by
Kirchhoff et al in the American Journal of Critical Care, 2002;11:200–209.
Now that you’ve read the article, create or contribute to an online discussion about this topic using eLetters. Just visit http://ccn.aacnjournals.org and click "Respond to This Article" in either the full-text or PDF view of the article.
None reported.
Corresponding author: The Rev. Lisa A.P. Watson, MDiv, BCC, Regions Hospital, Chaplaincy Department MS 11102J, 640 Jackson St, St. Paul, MN 55101 (e-mail: Lisa.A.Watson{at}HealthPartners.com).
In this article, the critical care patients are adult patients in any intensive care unit (ICU; surgical, medical, cardiac, burn) who in the course of a hospitalization have had a loved one die either in a related incident or because of other injury or health issues. The approach recommended focuses on the importance of the timing of the news, provides patients with a safe and healthy beginning for their grieving, considers the needs of the other grieving family members and the hospital staff caring for the grieving patients, and identifies the hospital chaplain, with his or her experience and training, as the one to be the giver of the news.
Grieving Patients and Families
Statistics on how often critical care patients must be informed of the death of a loved one are not generally tracked. However, at Regions Hospital in St. Paul, Minnesota, a level I trauma center, the Trauma Registry does track the number of patients with trauma due to motor vehicle accidents (ranging from minor injuries to critical injuries) in which a fatality has occurred in the same vehicle. The other person or persons who died may or may not be a relative of the surviving patient; nonetheless, the patient must be informed of the death. In a 24-month period, from October 1, 2004, to September 20, 2006, the Trauma Registry recorded 55 trauma patients who survived an accident in which a fatality occurred in the same vehicle. These fatalities are often relatives or friends of the surviving patient but sometimes may be mere acquaintances. In any case, the patient still must be informed of the fatality and be given the time and space to grieve as needed.
Some examples of critical care patients who might need to be informed of a loved one’s death include the following:
These situations affect not only patients and their family members who are present to support them but also the hospital staff caring for the patients. The family members who are already concerned about the surviving patient are also grieving the death of another family member. With this added stress, they are concerned about their loved one’s ability to cope with the news and worry that the news will cause a medical setback or, even more so, that their loved one may lose the will to live.
Hospital staff, especially the nursing staff providing day-to-day care for the patient, struggle because they tend to know the news before the patient does, and when family members try to keep the news from the patient, the nursing staff are often caught in the middle. Other interdisciplinary team members, such as chaplains and social workers, can provide a framework in which they work with a patient’s family members and hospital staff to prepare the way for the news to be shared with the patient. Preparation for these situations provides the patient with the best possible environment in which to hear this bad news, provides for the care of other grieving family members, and honors and attends to the needs of the hospital staff caring for the grieving patient.
Current Research on Informing Someone of Bad News
Although the verbal component of actually giving bad news is important, other skills are also needed.2,4–6 These skills include responding to a patient’s emotional reactions, involving the patient’s family members, and moving members of the patient’s family toward a sense of hope for the future. "The task of breaking bad news can be improved by understanding the process involved and approaching it as a step-wise procedure, applying well-established principles of communication and counseling."2 Although the actual telling of bad news is a difficult experience for both the giver and the receiver, when managed, it can help move patients toward healthy grieving and acceptance of the loss of a loved one.4–6 When managed poorly, it can actually hinder a patient’s progress toward healthy grieving and even lead to undue emotional stress because the patient is now also struggling with the effects of that encounter.4–6
To improve the future quality of care at Harborview Medical Center in Seattle, Washington, Jurkovich et al3 conducted an 18-month survey to "identify the most important characteristics and methods of delivering the bad news of death." The survey included 48 families whose loved one died of a trauma-related event in either the emergency department or the ICU. The families were asked to rate 14 elements (Table 1
) on the level of importance when receiving bad news.
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Research2,5,7,8 indicates that most patients want to be informed of their own medical condition. The percentages vary; in some cultural and religious traditions, patients do not want to know this information.7,9 Although this research is specific to patients receiving information about their own condition, the findings often apply to any patient and family members who want to know the truth about a loved one so that they can begin to accept the news and move forward.
Existing Models for Communicating Bad News
Several models exist for delivering bad news. Bad news is defined as any news that adversely affects a person’s view of his or her future.1,2,4,5 In this article, the person receiving the news is a critical care patient, and the bad news is the death of a loved one, whether a member of the patient’s family or a dear friend of the patient. The models are the PEWTER model,1 a mental health clinician’s guide to death notification,4 and the SPIKES model.2
The PEWTER Model (Table 2) was developed specifically for use by community emergency mental health workers who may be delivering news of a death, a violent crime, a school shooting, a natural disaster or one created by humans, or a terrorist attack.1 The Eberwein model (Table 3) for the mental health clinician’s guide to death notification is similar to the PEWTER model but includes a time for viewing the body.4 Eberwein developed this guide to provide a systematic delivery of the information so that mental health professionals might feel a better sense of control and awareness of what to anticipate when delivering the news of a death. Although viewing the body can be an important part of acceptance and closure, sometimes it is not an option because of various factors related to the body itself (eg, dismemberment, the body was not recovered or was already buried or cremated).4 Offering other meaningful ways to say good-bye and providing counseling services can help move the recipient of the bad news toward acceptance of the death.
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) is a protocol for delivering unfavorable information to cancer patients about their illness.2 It was developed after the 1998 annual meeting of the American Society of Clinical Oncology in which an informal survey was conducted on participants’ experiences in breaking bad news to cancer patients. After the development of the SPIKES model and subsequent training of physicians, residents, and medical students at the University of Texas M.D. Anderson Cancer Center in Houston, Texas, users of this model reported having more confidence in their ability to discuss unfavorable medical information with their patients.2
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Compared with reporting a diagnosis or death in the community setting, informing critical care patients of a loved one’s death has its own unique aspects and dynamics (Table 5). These dynamics require teamwork with patients’ family members, nurses, social workers, and chaplains and careful attention and planning.
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To Tell or Not to Tell
Most patients want the truth about their own condition, options, and prognosis.2,5,7,8 The experience of chaplains and social workers reveals that most people want to be told the truth about the death of a loved one. In addition, people have a right to know the truth. Often, even though they have not actually been told about the death, patients later share that they already knew. They report that they knew because their loved one had not come to see them in the hospital, because they have some hazy memory of the accident, or because no one else would talk about that person or would change the subject when the patient asked about that person.
Sudden death is totally abrupt, giving no time for preparation or to say goodbye, which can be extremely difficult for those left behind. The sudden death of a loved one has the capacity to leave people damaged or to result in a prolonged and painful grieving process that is made worse by the lack of time or preparation for the death, leading to a "double grief "—for what is lost and for what might have been.10
Although the intention to withhold news of a loved one’s death is most often due to compassion for a patient, the patient’s grief and suffering will not be diminished by withholding the news. And, if the patient finds out later that family members withheld the information, relationships could be unnecessarily strained at a time when family members should be comforting one another. This strain can also occur between the nursing staff and a patient if the patient feels he or she can no longer trust the nurses because they withheld this information.7,10–12
Whether the withholding of information is a form of lying or deception is a constant topic of debate among ethicists.12 Most important, hospital staff should consider the ongoing relationship between the patient, the patient’s family, and staff when discussing the overall value and intent in withholding this information from a patient. Truth-telling sets up a sense of trust and safety not only among the grieving family but also between the patient, family, and hospital staff. Family members and staff who do attempt to withhold information from a patient find themselves paying a high emotional cost; they are always in fear of the patient’s asking questions, of having to lie, and of the consequences when the patient eventually discovers the truth.10,12
A survey8 of trauma patients showed that in general they were frightened; they wanted to know what happened in the accident, what was happening now, and what would be happening. Trauma patients find themselves thrust into the unknown and chaotic hospital environment with no sense of safety or control. The respondents to the survey8 reported that they regained some sense of control by acquiring knowledge: knowledge about the accident, about their own injuries, and about anyone else involved in the event.
Families’ Concerns
During discussions with a patient’s family about when and how to tell the patient of a death, family members may focus on the following concerns:
These concerns are all very real and should be addressed with the family members before talking with the patient. It is best to address the concerns as soon as the family knows of the death so that the hospital team of nurses, social workers, and chaplains can be working with the family to make a plan sooner rather than later. The inner resources of the patient should not be underestimated when discussing when and how to share the news of a loved one’s death.10
While they are concerned about adverse effects on the patient, the family should be assured that the patient is in a safe place. Patients are under the care of physicians and nurses to address health care needs, and social workers, chaplains, and, possibly, psychiatrists or psychologists are available to address psychosocial, spiritual, and psychological needs.
In a study13 of the stress of bereavement on the endocrine and immune systems of bereaved widows, mortality and physical illness increased during the first 2 years of bereavement. Of note, the changes in the endocrine and immune parameters were significantly marked in the early weeks of bereavement and were still present in some widows even 6 months after the death of their spouse. Sometimes, what is not being said or talked about can also add stress and anxiety, and the delay in telling the news may be adversely affecting the patient.
Nurses’ Concerns
When a family wants to delay telling a patient about the death of a loved one, the family’s wish affects the entire staff caring for the patient, especially critical care nurses, because the nurses are the ones providing the most direct care.11,14 In these situations, if the patient is alert enough to ask questions either verbally or in writing, nurses are under moral distress as they try to avoid answering the questions.12,15 These situations also strain the nurses’ relationship with those family members who have requested the withholding of the information. The nurses may resent the family members for causing the nurses to lie or deceive the patient. If a patient learns that a nurse knew about the patient’s loved one and was avoiding or even lying to the patient, the patient may lose trust in that nurse.11,12,15
| With specialized skills and training, the hospital chaplain is often the appropriate person to guide the patient, the patient’s family, and hospital staff through the process and offer grief support throughout the hospitalization. The critical care model of assessment and consultation, information gathering, preparation, discussion, ongoing support, and resources provides a safe and healthy environment for patients to learn of a loved one’s death.
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Another factor to address includes the nurses’ own feelings when working with bereaved patients and patients’ family members. Working in such an environment causes nurses to face their own mortality and the reality that everyone will one day die.10,15 Kendrick15 found that nurses often use defense mechanisms to avoid bereaved patients and the patients’ family members. Caring for bereaved patients and their bereaved family members at such an acutely painful time is a difficult aspect of the nursing role.15
Patients’ Concerns
Patients probably will want to know the details of what happened.8 They may ask where is their loved one’s body, can they view the body, will they be a part of the funeral planning or even be able to attend the funeral. They may also begin to have concerns about medical bills, finances, housing and job issues, legal issues, possible child care problems, and so on. A chaplain and social worker can help patients and patients’ families with some of these issues. For the period of the discussion about the death, acknowledging that a patient has these concerns and that over time these issues can be addressed will be helpful. Trying to keep the patient in the present moment and allowing for the beginning acceptance and grieving will be the priority of this conversation. Subsequent visits with the chaplain and social worker can be arranged to discuss the other concerns.
At times, patients may avoid asking about their noticeably absent loved one. They themselves are trying to avoid the pain and suffering by not talking about the missing person.15 Again, this avoidance will not diminish their suffering, because they probably are suffering anyway; they are just not talking about their concern openly.
Who Should Tell . . . and When
Patients’ family members are not trained to share bad news or facilitate the processing of emotions. A patient’s family members are also grieving themselves and should not be put in the position of trying to be the news giver. With the hospital chaplain as the leader in telling the bad news, family members and other hospital staff are comforted in knowing that they will not need to be the one to tell the patient of a death. Family members then are relieved of the burden of thinking they might always be thought of as the ones who shared the news. Having a chaplain be the news giver also allows the family members to support the patient when the patient is being told of the death; providing support is the appropriate role for family members in this situation.
The stress that comes from the family members’ worries is typically relieved once a plan has been made with the hospital staff and the family members are assured that the staff will participate in the news sharing so that the family members feel supported. The relationship that the family members develop with the chaplain and social worker allows for ongoing comfort and support so that the family members do not have to "go it alone."16
Because a patient’s nurses work so closely with the patient, they are often the first ones to notice that the patient is more alert and may be wondering or even sometimes asking directly about one of his or her family members. Even patients receiving ventilatory support can be alert enough to hear the information and can begin to grieve. If a patient is receiving ventilatory support, those present with the patient should try to anticipate the questions the patient might have. Once the patient is more awake, he or she is likely beginning to look around the room and take notice of who is and is not present. The patient’s nurses should be working closely with the social worker and chaplain in preparing for the time when the patient will be told of the loved one’s death. The social worker and chaplain will also meet with the various family members involved to assure them of the best timing and provide support and resources for the family members during the members’ grieving.
A Sense of Relief
Once the information about the death has been shared with the patient, everyone is able to move toward coping with the news. The family’s stress level in worrying about telling the news is gone, and they often express a sense of relief. The staff and family are no longer worried about being the ones to inadvertently tell the patient, and now they can offer support to the patient as he or she begins to grieve. The patient can now join with his or her family in grieving. The patient continues to be cared for by nurses and physicians, and the chaplain and social worker are present to provide ongoing spiritual and emotional support to the patient and the patient’s family.
Recommended Model for Critical Care
Literature reviews support my view that most models described (including PEWTER, SPIKES, and the mental health clinician’s guide to death notification) do not address the unique aspects of informing a critical care patient of a loved one’s death. Most other models are for informing a patient of a new diagnosis or poor prognosis or for making death notifications in a community setting.
The unique aspects of the critical care unit, the involvement of a critically injured or ill patient, and the ongoing presence of the patient’s grieving family and friends call for a model designed for these aspects. The new model I propose is the critical care model for communicating the death of a loved one. This approach recognizes elements from the previously described models and tailors telling a patient about the death of a loved one to the critical care setting (Table 6).
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Information Gathering
Information should be gathered about the circumstances of the death, where the body is, if the patient will be able to see the body, and possible funeral plans.4 If the deceased is an immediate family member, such as the spouse, child, sibling, or parent, it is helpful to counsel families on the possibility of postponing the funeral until the patient is able to attend. In some religious traditions such as Islam and Judaism, burial must happen within a certain time frame. Knowing the patient’s faith tradition and its practices will be important for knowing if timing is an issue and for including faith leaders in the arrangements as needed.
Preparation
Preparation includes the following:
Because the team has spent a great deal of time in preparing a plan, even if the patient is told unknowingly by another person, most of the plan can still be followed. If the patient hears from someone prematurely, the nurse should confirm that the patient’s loved one has died and that the nurse will contact the person (chaplain or otherwise) who will be able to provide more details about what happened. The person who unknowingly informed the patient of the death may benefit from reassurances from the staff that a well-prepared plan is in place for such a situation.
If making the patient wait more than a few minutes would cause the patient undue stress, the nurse may decide to move forward with the discussion that had been planned. In those situations, notifying the chaplain and social worker that the discussion has already taken place will prompt them to come and offer additional spiritual and emotional support to the patient and the patient’s family.
Discussion
The conversation with the patient about a loved one’s death typically proceeds best when only one person leads the discussion. Others present may offer helpful information as needed or requested by the leader of the discussion. The chaplain is one of the few hospital staff persons who is not providing hands-on nursing care or therapies to the patient or performing medical procedures. Thus, the chaplain can develop a relationship with the patient that is based on supportive listening and presence. The chaplain may also be providing support to the patient’s family and so may have a good sense of the family dynamics involved. Family members may be in the midst of their own grieving and concern for the patient and therefore unable to provide an objective approach to the discussion or to assess and manage the emotional needs of the patient during the discussion. Although each discussion will be unique to the situation, the following provides a general idea of how a discussion might proceed:
Ongoing Support of the Patient and the Patient’s Family
Although all hospital staff may be providing some level of spiritual, emotional, and psychosocial support to the patient and the patient’s family, it is the primary role of chaplains and social workers to attend to these needs. The patient’s ongoing needs will vary, depending on his or her medical condition. Because of the medications they are taking and their own injuries or illness, patients may not remember what they have been told.17 Having to tell a patient repeatedly about the death of a loved one can be difficult for the patient’s family members and staff, but continuing that open dialogue with the patient will aid in healing. A patient who has been in an accident may need help in processing memories of the accident or even the frustration felt if he or she cannot remember anything about the accident. Helping patients process those memories is helpful for the patients’ grieving.
Survivor’s Guilt
Patients who survive an accident in which others have died may experience survivor’s guilt. Survivor’s guilt is common and is defined as "a uniquely deep sense of guilt, often combined with feelings of numbness and loss of interest in life, felt by those who have survived some catastrophe."16 Survivor’s guilt is often detected through a patient’s statements about feeling that he or she did not do enough to save those who died, is in some way responsible for the death, or is not worthy to be the one who survived.16 Sometimes these statements are not based in reality, but other times they contain a lot of truth. If a patient (ie, survivor) had been intoxicated and was in an accident while driving in which another person died, the patient’s statements of feeling responsible are based in reality and should be addressed.
Sometimes the feelings are more related to the absence of the patient because of other circumstances. For example, a patient was late in picking up his or her loved one from work because of heavy traffic, and the loved one decided to walk home and was hit by a car and died. The patient feels guilty and thinks that he or she could have prevented the death if he or she had been on time. These feelings are also real, and talking with the patient about the nature of accidents and circumstances that are indeed out of a person’s control will be important. Sometimes these guilty feelings are manifested more by the patient’s behaviors, such as responding inappropriately with humor or even displaced anger.16
It is vital to not automatically dismiss a patient’s guilt and sense of responsibility without knowing the circumstances of the events. Asking questions to clarify why the patient feels guilty and addressing the realities of what happened are important ways to help the patient process feelings of guilt and responsibility. Guilt is a natural reaction any time one person survives and others do not. Whether or not the survivor is directly involved or possibly responsible for the death affects the level of guilt the survivor might be feeling. Patients who are medically ill and were not present when a loved one died may have feelings of guilt for not being with the loved one or may still somehow feel they could have prevented the death.
Early intervention, helpful referrals, and follow-up can help survivors overcome this emotional wound.16 Critical care nurses have a unique opportunity to begin this early intervention because they are the ones who provide the most direct patient care. Nurses can be a listening ear, but they can also notify social workers and chaplains when a patient’s comments indicate the patient’s sense of guilt. Ways in which critical care nurses can help survivors who have an overwhelming sense of guilt are listed in Table 7.18
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Ongoing Support to Staff
Staff members may also continue offering support to one another; the emotions of patients and patients’ families can also be stressful for the caregivers. Sometimes the circumstances of one case or the impact of several stressful cases in a unit might necessitate more formal support. One formal support model is critical incident stress management (CISM).19 CISM is an intervention used for sudden unexpected critical events or for cumulative stressful events. CISM includes critical incident stress debriefings in which attendees can express their thoughts and feelings in a safe, nonthreatening environment with trained debriefing leaders. A critical incident is a situation or event that evokes unusually strong emotional responses that may interfere with a staff member’s ability to function. The purpose of CISM is to promote healthy recovery after such a traumatic event. Debriefings are usually offered within 24 to 72 hours of an event and may last 1
to 2 hours. Debriefings are not case reviews and are not designed to evaluate the medical care a patient received.
A shorter, less structured, and less formal CISM intervention is a defusing. A defusing is used to stabilize the working crew so that they can return to normal service or go home without unusual stress if they are at the end of their shift. A defusing is often offered within a few hours of an event and may last 30 to 45 minutes. CISM interventions are not an operational critique of the event or a form of therapy. Many hospitals and communities have CISM teams who can provide support as needed or requested.
Resources
Chaplains and social workers provide the appropriate community resources for ongoing support in the community for patients and patients’ families once discharge from the hospital has occurred. Such resources might include connecting the patient and family with an appropriate faith community; counseling services through support groups, counseling centers, or employee assistance programs; community financial resources; bibliographies on grief and loss; and funeral assistance information.
Because grief and loss are spiritual crises, the chaplain should have a variety of information and resources available for patients and their family members. As the nurses, chaplains, and social workers continue working with a patient and the patient’s family, they provide an ongoing assessment of spiritual and emotional needs. They attend to those needs throughout the hospitalization and offer resources for continued counseling and support in the community after discharge from the hospital.
For a patient recovering from a trauma-related injury, educating the patient and the patient’s family about signs and symptoms of post-traumatic stress disorder before the patient’s discharge from the hospital will help them be aware of issues that may arise later on. Signs and symptoms of this disorder include vivid thoughts of the accident or injury; inability to return to the scene or to the activity (eg, driving if the patient was injured in a car accident); problems with concentration; changes in sleep patterns, mood, or appetite; and increased irritability.18 Early diagnosis and timely referrals can markedly reduce medical expenses, disability payments, and lost wages. Simple screening questions help detect signs and symptoms such as nightmares or flashbacks, avoidance behaviors, hyperarousal, and increased startle responses. This screening alerts health care professionals to the need for various treatment options such as exposure-based interventions, cognitive restructuring, and cognitive behavior therapy.18
Whether a critical care patient is recovering from a trauma or a medical event, regular visits with the patient’s primary physician should be encouraged so the patient receives ongoing monitoring for indications of posttraumatic stress disorder or depression.
Summary
Informing a critical care patient of a loved one’s death is a common event. Teamwork among hospital staff and the patient’s family members, a well-thought out plan, and ongoing spiritual and emotional support promote a healthy and safe environment for the patient to receive this news and to begin grieving. Because no current models take into account the unique aspects of the critical care setting, the proposed critical care model for communicating the death of a loved one borrows from other models designed for communicating bad news to cancer patients and delivering death notifications in the community. Table 8 is a side-by-side comparison of these 4 models and gives the distinct elements of the critical care model. The critical care model includes assessment and consultation with the chaplain, social worker, nurse, and family members; gathering information about the circumstances of the loved one’s death; having the discussion with the patient; ongoing support throughout the hospitalization; and resources upon discharge for support within the community. Along with providing ongoing support while the patient is hospitalized, health care personnel provide ongoing assessment of the patient’s coping, monitor the need for antianxiety or antidepressant medications, and, if needed, educate the patient and the patient’s family about the signs and symptoms of posttraumatic stress disorder.
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