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Corresponding author: KarinT. Kirchhoff, RN, PHD, FAAN,Box 2455 K6/358 CSC, School of Nursing, University of Wisconsin, Madison, WI 53792-2455 (e-mail: ktkirchhoff @wisc.edu).
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Abstract |
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Objective To assess the feasibility of testing 4 tailored messages to prepare families of patients having a planned withdrawal of life support, to assess barriers to conducting such a study, and to obtain preliminary data on measurable effects that could be used to compare such preparation with usual care. Self-regulation theory was used to structure the messages.
Methods Families were randomly assigned to usual care (n=10) or to an intervention group (n=10) that received 1 of 4 tailored messages to prepare them for withdrawal of life support. They were contacted 2 to 4 weeks later to complete the Profile of Mood States and to give their evaluation of the experience, inclusive of the information received.
Results Compared with the usual-care group, the intervention group was significantly more satisfied with the information they received and understood better what was to happen. The intervention group had lower negative mood scores and higher positive mood scores than did the usual-care group, although the difference was not significant. Unsolicited comments by the usual-care participants were requests for the specific information that had been received by the intervention group.
Conclusions The information provided was considered helpful. A larger sample might yield more significant differences. Further work is needed on other aspects of preparation such as healthcare support, spiritual issues, and preparation for funeral arrangements.
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Notice to CE enrollees: A closed-book, multiple-choice examination following this article tests your understanding of the following objectives:
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Hebert et al2 recently summarized the literature on end-of-life preparedness. Several studies supported the notion that lack of preparedness for death is associated with negative emotions such as depression, anxiety, and complicated grief. Hebert et al challenged the belief that having received explanations of prognosis or having accepted that death is inevitable implies that one is prepared. According to them, preparedness involves (1) knowing signs and symptoms to expect during the terminal phase, (2) discussing grief and emotions, (3) engaging in spiritual activities, and (4) planning funeral arrangements.
Preparing patients’ families for withdrawal of life support is often recommended in a general sense, but the specific information needed to prepare them has not been empirically identified. Curtis3 recommended telling families how treatments will be withdrawn, how the patient’s comfort will be ensured, how long the patient is expected to survive, and how the clinical team will continue to provide care. However, the recommended information does not address the categories of Hebert et al2 and does not include what the families will see, hear, or feel at the bedside. Recently, Lautrette et al4 reported the results of a study on lessening the burden of bereavement for the families of ICU patients. In that study,4 researchers provided patients’ families with a brochure on bereavement, gave longer conferences, and allotted more time for family members to talk.
| Lack of preparation for death is associated with depression, anxiety, and complicated grief.
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Several studies have been undertaken to develop the sensory information for this type of preparatory message. First, Kirchhoff et al5 reviewed critical care nursing textbooks to find content recommended for use in preparing patients’ families. None was found. Next, Kirchhoff et al6 reviewed 50 charts of patients who died after withdrawal of life support in an ICU and looked for any descriptors of indications of impending death that should be revealed to families. Although no such indications were found, some inadequacies of documentation during withdrawal of life support were uncovered. Last, a survey of the ICU nursing staff in 3 hospitals was used to assess the current practices in family preparation.7 The nurses shared some information about the content they provide families, but most of the information was about the physical signs of impending death rather than the temporal features, environment, and causes of the signs as recommended by Johnson.8
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Theoretical Background |
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The concrete, objective information includes (1) physical sensations and symptoms that occur, (2) temporal characteristics, (3) environmental features, and (4) cause of sensations, symptoms, and experience. Johnson8(p445) wondered if "self-regulation theory interventions for families and significant others of dying patients increase their ability to cope with the experience." When concrete, objective information is provided to prepare someone to witness a stressful event such as a death, the person develops a revised mental representation or schema of the event that more realistically prepares him or her for what to expect. We used these 4 features to structure the information about the patient’s impending death for a patient’s family members present at the bedside.
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Intervention |
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). Kaufman et al9 identified factors that could be used to predict time until death after withdrawal of life support. Use of vasopressors, poor respiratory strength, slower respiratory rate, prolonged ventilatory support, and number of organs in failure were associated with a death in 60 minutes or less. Survival was longer in patients with a primary brain injury. These factors are useful in tailoring messages because some changes (eg, mottling, decrease in skin temperature) take longer to occur and thus would be included in the message only when death is expected to take longer than 60 minutes. The clinician’s preference determines whether a patient is extubated at the beginning of withdrawal of life support or remains intubated during most of the process. The 4 possible messages were labeled as follows: short time–intubated, short time–extubated, longer time–intubated, longer time–extubated.
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| There was no attempt to control what the unit’s staff said to prepare the families.
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Although an attempt was made to describe the most likely signs, no attempt was made to match potential signs with actual signs because Johnson8(p438) found that "description of only some of the concrete-objective features of an impending experience facilitates the formation of a representation that is useful in coping with the experience." Families were encouraged to tell staff their wishes with respect to privacy and other preferences, such as preparing or bathing the body after death. The intervention took approximately 10 to 15 minutes and was provided whether or not the next of kin chose to be present at the bedside during the withdrawal of life support measures.
The purpose of the study reported here was to assess the feasibility of testing 4 tailored messages to prepare families of patients having a planned withdrawal of life support and to assess barriers to conducting such a study. The study also was designed to obtain preliminary data about the measurable effects that might occur within the first weeks after the death.
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Method |
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| The usual care group had higher negative moods and lower scores on vigor than did the intervention group.
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Although study staff were aware that 37 patients were being assessed, that number most likely is an underestimate of the number of patients available during study hours. Of the 37 patients, 15 were excluded because of not meeting criteria (n=6), refusals (n=5), or the research staff’s inability to arrive before the withdrawal of life support (n=4). Participants (n = 22) were randomly assigned to the usual-care group or the intervention group by using the coin-toss method. A total of 11 participants were recruited into each group. In each group, 1 participant was lost to follow-up; thus, 10 participants per group completed the study. Because of privacy, research staff were not permitted to screen or approach families of ICU patients. A real estimate of the numbers of eligible participants is not possible.
Instruments
A patient information sheet and a next-of-kin demographics form were used to obtain demographic information. The information sheet also listed the reason for hospitalization, length of time hospitalized, and actual time elapsed before death after withdrawal of life support. The demographics form provided contact information for later follow-up.
The checklist for withdrawal process and intervention contained variables used to select which of the 4 possible messages would be provided to each family. The items were used to predict the length of time until death9 and to assess the clinician’s preference about whether the patient would remain intubated during withdrawal of life support or be extubated at the beginning of the withdrawal process.
Two instruments were used to evaluate the effectiveness of the intervention. The first, the Evaluation of the Experience of Withdrawal, consists of 25 questions to assess the next of kin’s level of coping, the level of preparation for the withdrawal of life support, and the effect of the preparation on the experience of withdrawal of life support. Participants were asked to respond on a 10-point Likert scale, with 0 being not at all and 10 being very much so, choosing the number that corresponded best to a series of statements; for example, "I have been able to get back to my usual routine now." These items were used to evaluate potential outcomes that could be targeted in future studies and to assess the acceptability of the message.
The second instrument was the Profile of Mood States–short form.10 This form includes 37 adjective rating scales that describe 6 subscales of 5 negative moods (anxiety, anger, fatigue, depression, and confusion) and 1 positive mood (vigor). For each subscale, scores are derived by totaling the scores (assigned on a scale of 0 to 4) for the items in that subscale and dividing by the number of items. A score for total mood disturbance is calculated by adding the mean scores of the negative moods and subtracting the mean score of the positive mood. Using the time of withdrawal as the referent, respondents were asked to rate how well an adjective described their feelings; for example, "At the time of [withdrawal of life support], how well would the adjective tense describe your feelings? Not at all, a little, moderately, quite a bit, or extremely." Results from this short form of the Profile of Mood States correlated well (>0.90) with results from the original longer scale of 65 items and had internal consistency reliability for the subscales ranging from 0.8 to 0.9.
Procedure
The study was approved by the health sciences institutional review board at the University of Wisconsin. The hospital in which the data were collected did not allow researchers to screen for eligibility. Therefore, ICU staff were asked to page a researcher when families of ICU patients were available and had agreed to be approached by a researcher. Families who agreed were approached by a researcher after a family meeting in which the decision to withdraw life support was made. A written script introducing the study was read to each family in a private setting. Family members were told that the purpose of the study was to evaluate information provided to families about withdrawal of life support. All family members or other interested persons as designated by the family were invited to participate in the discussion with the research nurse. Primary and secondary family members (the latter to be used if primary family members could not be contacted) were identified as next of kin for follow-up.
After written consent for participation was obtained, participants were randomized to the usual-care group or the intervention group. In the usual-care group, demographic data were obtained. In the intervention group, in addition to collecting demographic data, the research nurse delivered the appropriate message (the intervention) to the next of kin and other family members who were interested. A written copy of the information was provided for their review. The withdrawal of life support occurred shortly after the message was delivered.
Participants in both groups were thanked for their participation, offered condolences, and assured that the ICU staff would provide information about the withdrawal process and manage the patient’s signs and symptoms. The research nurse was available in the unit for approximately 1 to 2 hours or until the time of death. She documented whether the family chose to be present in the patient’s room during the dying process and observed if any unusual circumstances were associated with the death, but she did not participate in caring for the patient or provide additional information.
No attempt was made to control what the unit’s staff said to prepare the families or to assess what information was provided. The additional impact of a structured message tailored to the patient was the only part we evaluated. It was understood that both groups would receive various amounts of information because of the experience and skill of the staff assigned on that day; randomization was done in an attempt to keep that amount similar in both groups.
Between 2 and 4 weeks after each patient’s death, the primary next of kin was contacted for a telephone interview. The research nurse again explained that the purpose of the study was to evaluate whether the information the family received was helpful. During the telephone interview, the research nurse confirmed the person’s consent to participate in the research, and data were collected by using the Evaluation of the Experience of Withdrawal questionnaire and the Profile of Mood States. All comments by the next of kin were read back to ensure authenticity. Additional spontaneous comments of participants were written down. The researcher then thanked the participant, offered condolences, and, when appropriate, provided information about local resources such as grief support groups. Exit interviews took approximately 15 to 20 minutes to complete.
Data were collected from October 2003 to March 2006. Although about 200 withdrawals of life support occur in this ICU each year, the research staff were available only Monday through Friday during day hours and during academic semesters. Later, when possible, coverage for weekends and evening hours was added. Sometimes nursing staff were reluctant to notify research staff about families’ availability, sometimes a patient’s family members were too upset to process information, and sometimes the decision to withdraw life support was quickly followed by the withdrawal, not allowing time to contact the research staff. Nursing staff were not always comfortable with approaching families to ask if the families were willing to talk to researchers about study participation right before an impending death. Staff meetings and administrative support reduced this limitation over time.
| Intervention group participants felt well prepared for the withdrawal of life support.
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Results |
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). Most participants were male, 7 in the intervention group and 9 in the usual-care group. All participants except 1 were white. Participants’ relationship to the patient was predominantly either spouse or child.
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). The median hospital length of stay was 4.5 days in the intervention group and 3 days in the usual-care group; median length of stay in the ICU was 3.0 days in the intervention group and 2.5 days in the usual-care group. Median time to death after a withdrawal was about 43 minutes (range, 2–285 minutes) in the intervention group and about 82 minutes (range, 20–239 minutes) in the usual-care group. Each patient’s race corresponded to the race of the patient’s family members.
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). The score for "I was provided with helpful information about death after withdrawal" was higher in the intervention group (mean, 9.0; SD, 1.25) than in the usual-care group (mean, 7.1; SD, 2.28; Mann-Whitney U = 24.5, P [2-tailed] = .05). The score for "I understood how death after withdrawal was likely to occur" was higher in the intervention group (mean, 9.6; SD, 0.52) than in the usual-care group (mean, 8.4; SD, 1.35; Mann-Whitney U = 23.00, P [2-tailed] = .03).
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).
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One family member from the intervention group stated that she was not sure if any way existed to adequately prepare for the loss of a loved one and that no amount of preparatory information could curtail the loss or lessen her grief. Another family in the intervention group listened intently to the tailored message, asking many questions about each part—specifically how they could interact with their loved one, if symptoms would be distressing, what care would be provided by staff, and what caused each of the physical changes. They explicitly stated their appreciation of the time spent with them. They said that the information was helpful and that they felt that everyone experiencing a loss should be receiving it.
No additional information was provided to families beyond what was stated in the intervention message unless provided by the ICU staff independent of the research nurse. On 2 occasions, families from the usual-care group solicited the researcher’s input on the condition of their family member as withdrawal proceeded, asking many questions about how long it would take, whether the patient would be in pain, what would be done, and what they would see. These families were referred to the ICU staff as a resource for information on the dying process and care that would be provided.
Intervention Group: Comments at Follow-up
Although not asked to do so, the interviewer noted spontaneous comments at follow-up. Participants in the intervention group often commented that they felt very well prepared for the withdrawal of life support. In particular, one of the participants stated that the information provided helped prepare her for the jerking, twitching muscles, heaving breaths, and cold temperature her loved one experienced. Another stated that he was glad he was prepared for the worst-case scenarios and relieved that they did not occur. He went on to say that he could see how not being prepared for the worst would make the death very traumatic.
Perhaps the best example of preparedness was that one of the participants chose not to be present in the room when his loved one died. He understood that the signs of impending death outlined in the intervention message might have left him with unpleasant memories. Although the messages were designed to prepare family members about what they would experience, having such information also allowed them to make a more informed choice about being present at the patient’s bedside.
Participants in the intervention group made several comments about feeling more comfortable being with their loved one because of the information provided to them. For 1 participant, the information helped with his fear of touching a deceased person and helped his family be more comfortable at the funeral home. Several of the respondents from the intervention group requested that staff ask families if they would like someone to sit with them, perhaps clergy.
Usual-Care Group: Comments at Follow-up
At follow-up, the usual-care group often reported that they had to ask for information that was not provided to them. For example, 1 participant wished that she had been prepared for what she would see. She expressed frustration over not having a better understanding of what was going on, a situation that led to anxiety and nervousness. Another participant wished that she had been provided with a "sequential order of events" because this information would have helped her organize herself better. She wished that she had been told, "This is what we’ll do first, and this is what you might see when we do it."
| The usual care group reported having to ask for information that was not provided to them.
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Another participant from the usual-care group wished that someone had explained that the length of time to die differs from patient to patient. Cues were received either from the monitor or from nursing activities. One participant mentioned that she was not prepared for the monitors. She recalled watching the heart rate decrease to a very low rate on the monitor and then return to the patient’s normal rate; she was not sure what this change meant. Another participant stated that he and his family had been watching the monitor and finally the staff came in and turned it off. He was left to assume that "this was it," but no one actually said that, so he was left to wonder.
Some participants were left with ambiguous or disturbing memories. One participant recalled that after the breathing tube was removed, the nurse told the family that the patient was breathing well on his own and then left. Later, this nurse entered the room and checked on the patient and left without saying anything, making the respondent feel relieved because she sensed that it was not time yet. Another participant expressed feelings of guilt over having touched the patient, being unsure if it was okay to do so. One participant was startled by the grimace that remained on the patient’s face after the breathing tube was removed.
Overall, participants in both the intervention and the usual-care groups overwhelmingly endorsed the staff at the ICU by frequently stating how wonderful the care was. They said the "nurses felt like part of the family" and "as bad as everything was, people made it as easy as it could have been."
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Discussion |
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A larger sample size might yield more significant differences between groups. The differences we found, even with this small sample, are encouraging because all differences favor the intervention group. Trends for the effect of the intervention are evident in the lower scores for negative moods and higher scores for vigor on the Profile of Mood States. Because men predominated in this sample, the results could differ in a sample with a larger proportion of women.
Several items in the Evaluation of the Experience had relatively large standard deviations that precluded statistically significant differences despite mean differences between groups of 1 or 2 points. The information affected only the items related to being prepared. Additional components (not just provision of information) might need to be added to the intervention to affect coping, sense of closure, and other items. Some families mentioned their preference for having a supportive person present. Perhaps having a more homelike atmosphere in the room, more privacy, and quiet in the unit would create a stronger, more effective intervention.
The added comments from families during the intervention and during the follow-up were even more convincing of the need for and value of this intervention. Participants in the usual-care group seem to be requesting the information that the intervention participants had been given. Standardizing generic information to be given to all families will enable even less experienced nurses to know what to say. Tailoring that information to the clinical situation of each patient and practice of the clinician will help the preparation mirror the actual experience of the family members more closely.
An intervention based on the self-regulation theory8 may be helpful for preparing families approaching a planned death after withdrawal of life support. The theory has been tested in other settings with patients and has successfully helped these patients cope with diagnostic procedures or other threatening events. This theory has been used to help parents cope with unplanned hospitalization of children,11 but it has not yet been used to help families prepare for impending death.
As Hebert et al2 stated, preparation will also affect the survivors’ grieving process. As the intervention is developed more fully, perhaps by adding a support component, longer-term outcomes may be found. Results thus far on the informational aspects with this small sample are promising.
Limitations
The intervention was tested only on selected families, and not all families agreed to be in the study. Sometimes a family was too distraught to be approached for participation in a study. Sometimes the staff nurses were reluctant to invite a family to participate, or the withdrawal of life support occurred during a time when no research nurses were available. Generalizability is limited because of these reasons; however, all persons who agreed to participate were randomized into groups.
This pilot study was the first in which a supportive preparation for families experiencing withdrawal of life support was developed. We tested only an informational component. The sample size was small, and only a single setting was used. Although training of each research nurse who intervened was ensured, the stability of the intervention over time was not checked. Despite these limitations, the intervention group had positive outcomes.
The participants in the usual-care group had a shorter time with a research nurse because they did not receive the message. It was not thought desirable to occupy patients’ families any longer than necessary for the study even though an attention effect might be perceived by the intervention group. If such an effect were present, it should have been noted in other outcomes rather than just in the informational outcomes.
Additionally, no check was made on whether the message exactly matched what happened. This step could be added in a larger study.
Families of ICU patients should be prepared for the patients’ death. For patients who have withdrawal of life support, time to prepare their families is available because a schedule for withdrawal of life support is usually established in a family meeting. Nurses are in a unique position to provide this preparation because they are aware of the schedule, have a relationship with the family, and have the skill to provide a sensitive preparatory message when the content is defined.
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ACKNOWLEDGMENTS |
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To purchase electronic or print reprints, contact The InnoVision Group, 101 Columbia, Aliso Viejo, CA 92656. Phone, (800) 809-2273 or (949) 362-2050 (ext 532); fax, (949) 362-2049; e-mail, reprints{at}aacn.org.
To learn more about end-of-life decision making, visit http://ccn.aacnjournals.org and read the article by Mary Thelen, "End-of-Life Decision Making in Intensive Care" (Critical Care Nurse, December 2005).
Now that you’ve read the article, create or contribute to an online discussion about this topic using eLetters. Just visit www.ajcconline.org and click "Respond to This Article" in either the full-text or PDF view of the article.
This research was supported by Rodefer Chair Funds, University of Wisconsin, Madison.
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REFERENCES |
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  L. Bell Preparing ICU Families for Withdrawal of Life Support Am. J. Crit. Care., March 1, 2008; 17(2): 123 - 123. [Full Text] [PDF]
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