| HOME | HELP | FEEDBACK | SUBSCRIPTIONS | ARCHIVE | SEARCH | TABLE OF CONTENTS |
|
|
|
|||||||
|
|||||||||
 |
Abstract |
|---|
 Top Abstract BackgroundMethodsResultsDiscussion and ImplicationsReferences |
|---|
• Objectives Data from a larger study on treatment withdrawal (n = 74) indicated that the family members (n = 20) of some patients experienced conflict with clinicians during decision making. This secondary analysis was done to examine and describe the communication difficulties from the perspectives of patients’ family members who experienced conflict with clinicians about the care and treatment of the patients during withdrawal of life support.
• Methods A qualitative descriptive analysis of family members (n = 20, representing 12 decedents) who experienced conflict.
• Results Families described several unmet communication needs during the often rapid shift from aggressive treatment to palliative care. These needs included the need for timely information, the need for honesty, the need for clinicians to be clear, the need for clinicians to be informed, and the need for clinicians to listen.
• Conclusions Although family members who experienced conflict were in the minority of the larger study sample, their concerns and needs are important for clinicians to examine. Paying careful attention to these communication needs could reduce the occurrence of conflict between clinicians and patients’ families in caring for dying patients and reduce stress for all involved.
|
Background |
|---|
|
TopAbstractBackgroundMethodsResultsDiscussion and ImplicationsReferences |
|---|
Communication can be especially difficult during stressful or anxiety-provoking situations, such as when a loved one is critically ill. Researchers have described the stress that patients’ families experience during the hospitalization of the patients.21,22 Stress and anxiety are normal responses to external or internal threats; however, they can complicate communication. Stress and anxiety can have effects on thinking, perception, and learning that result in lowered concentration, reduced recall, distorted perceptions, and confusion.23 At the same time, the information clinicians attempt to deliver to patients and their families, such as a prognosis of imminent death, are often difficult to "hear." In her classic work On Death and Dying, Kubler-Ross24(p39) found that denial can function as a "buffer after unexpected shocking news" and that it allows patients or their family members time to collect themselves and mobilize other coping resources.
| Thirty percent of patients’ families are dissatisfied with communication during the care of patients.
|
Researchers25 also report that physicians sometimes find disclosing that a patient has a terminal prognosis is difficult and delay disclosure until they are absolutely certain that death is imminent. Accurately predicting when patients shift to a dying trajectory is difficult, especially for patients with advanced chronic lung, heart, and liver disease.26,27 Even when a terminal prognosis is known, clinicians manifest various degrees of frankness in their encounters with patients and patients’ families. In a review of research, Field and Copp28 noted that despite the trend toward open disclosure of terminal prognoses to patients and patients’ families, clinicians often use a conditional disclosure in practice. Although open disclosure is often described as an ideal, it is not always culturally appropriate. Open disclosure may be offensive or harmful in some cultures.29,30
Several barriers to effective communication are present within the healthcare system. Both clinicians and patients’ families have reported that continuity of care is important to effective communication near patients’ end of life.31,32 Barriers to continuity of care can include schedules that involve rotation of care-givers, shifts in assignments, multiple clinicians, turnover of clinicians, poor coordination, and transfers of patients.33
Knowing more about what patients’ families need and what they perceive as interfering with communications can help clinicians work better with families in the clinical setting. The secondary data analysis described here was intended to describe and summarize the communication concerns of patients’ families who experienced conflict with clinicians during the decision to withdraw life support.
|
Methods |
|---|
|
TopAbstractBackgroundMethodsResultsDiscussion and ImplicationsReferences |
|---|
Each patient’s family members were initially contacted 7 to 10 days after the patient’s death and were invited to participate in individual interviews 1 to 2 months after the patient’s death and 6 months later. To be eligible, the family members had to view themselves as participating in a decision to withdraw life-sustaining treatment. A semistructured interview format was used to collect data from up to 3 family members per decedent during face-to-face interviews (see Table 1
for examples of interview questions).
|
The complete data set provided sufficient data to detect patterns of variation among the families of the decedents. One pattern was the intensity of communication needs described by families who reported conflict with clinicians (predominantly nurses and physicians). For secondary analysis, we decided to sample purposefully those families who reported conflict with clinicians. Purposeful sampling is a useful technique for highlighting information-rich cases in which the phenomenon of interest is intensely obvious.35
A qualitative descriptive analysis was done to examine and describe the communication needs of those family members who reported conflict with clinicians.36 Data analysis included prolonged engagement with the transcribed text and individual and group analyses within and across texts. A total of 20 family members (27% of the total sample of 74 family members), representing 12 decedents, reported conflict with clinicians. Family members self-identified the presence of conflict by reporting yes to the following question: "Were there conflicts with clinicians in the process of making decisions?" Conflict with clinicians was characterized by disagreements between family members and clinicians over the care and treatment of the patient that were not easily resolved.
|
Results |
|---|
|
TopAbstractBackgroundMethodsResultsDiscussion and ImplicationsReferences |
|---|
). The language that participants used was sometimes quite strong. The language of the participants that is quoted here is similar in range and tone to the language used by all the participants who reported conflict.
|
Give Us Information. Family members described frustration at the inadequacy of information provided by clinicians. Several said that the burden of obtaining information was on them. As one family member noted, "The really factual information we didn’t get until we called a meeting." Another family member described how he kept "trying to grab somebody" to find out what was going on during a crisis with his wife. A different family member noted that not having any information made it difficult to tell other family members what was going on. "I didn’t get any information to tell anybody anything . . . It was like they couldn’t give information, we had to ask for it."
| Families said the burden of obtaining information was on them.
|
Several family members described difficulty getting in touch with the physicians. One family member reported that he pulled the physician off to the side and said, "Listen, you have to tell me what’s going on here." Families described leaving messages that were lost, waiting for physicians to show up, waiting for return phone calls, and not being notified of changes in the patient’s condition. As one participant said, "You can’t leave them [families] hanging. Had they talked to me, I could have made rational decisions." Several family members described "camping out" at the bedside all day waiting for physicians to show up. One participant described how she was reluctant to go to the bathroom because she thought she would miss the physician. She said she "waited and waited" and finally could wait no longer; she "ran in and out of that bathroom, and when I got out the doctor had been there and gone." As one participant said, "I think something needs to be done about it . . . maybe we together can get these doctors to understand that you’ve got to talk to people."
Just Be Straight With Us. Many family members reported that clinicians had not clearly spelled out to them the severity of the patient’s condition. Most family members described wanting clinicians to be "up front," "frank," "direct," or "forward" in providing prognostic information. One family member noted, "I think they need to have really frank discussions," and another said that if clinicians had "been straight" with him he would have discontinued mechanical ventilation earlier. As one family member said, "Just be straight and honest with the families." He described clinicians who "side-stepped" the issues. Families described that this lack of information about patients’ conditions made it much harder when clinicians asked the families about withdrawing life-sustaining treatments. As one man said, clinicians need to be "more specific, they need not to be afraid to talk to somebody about death." Lack of frank information early made subsequent discussions about withdrawal of life-sustaining treatment more difficult. The discussions were especially difficult when they occurred simultaneously with the family member actually understanding that death of the patient was imminent.
Although family members in general wanted clinicians to be straightforward with them about the patient’s condition, some family members expressed this desire much more strongly than others did. As one participant said, "Just tell us the damn truth." Other family members described that clinicians had not been honest with them, or even had purposefully deceived, withheld information from, and/or lied to them about the patient’s prognosis. They described that clinicians must have known that the patient was going to die but did not inform the families. As one family member said, "I was led to believe that my wife was getting better . . . but no, that wasn’t the truth. I wasn’t told the truth." As another family member described, "And so they kept telling us that everything was going to be all right. And I think that was wrong." One family member said that the only time someone told him the truth was the day his wife died when clinicians told him that "she had only three hours to live." He went on to say,
It isn’t fair for the doctors to know the condition of the patient without letting the husband know the truth. . . . Why do they believe that we are not strong enough to take these kinds of things? Their teaching has been bad. I could have handled it a lot better today had I been informed of what was taking place with my wife.
He described his suffering over choices he had based on what he thought was truthful information from clinicians: "I’ve got to live with that [his decisions] the rest of my days because doctors neglected to tell me the truth."
| Clinicians should "not be afraid to talk to somebody about death."
|
One family member explained that clinicians lied to him because they thought he was not able to handle the truth. Another thought that clinicians might not have told him the truth because they would not admit to themselves that the patient was going to die. He said, "I mean, if they knew [that his wife was going to die], and I know that they knew, whether they admit it or not, that she wasn’t going to make it," they should have told him. This family member went on to describe the missed opportunity to say goodbye to his wife because clinicians did not tell him that she was dying.
Talk to Us in Lay Terms. Families described sometimes having difficulty understanding what physicians told them. Several participants described their own barriers to taking in information and noted that they were not always hearing or processing information that clinicians gave them. One participant, describing the difficulty she had in assimilating information, said, "You’re not at your senses, you’re not thinking well, you’re not thinking straight." She went on to describe how she would prepare for conferences by writing down her questions and hoping that "those questions are answered to your level of understanding."
Families described that they sometimes did not understand what clinicians told them in part because of the language used. One family member said, "They need to speak with us in lay terms that we understand or at least tell us exactly what that [the term ‘acidotic’] means." Another family member described looking up words or calling a relative who was a healthcare provider to try to figure out what the information really meant. One participant described that her friend did not want to be on life support. He was receiving mechanical ventilation, but she reported that it took her "forever to realize that a ventilator is life support." Once she realized that she had approved the ventilator and that the ventilator was life support, she felt she had betrayed her friend by agreeing to something that she knew he would not want.
Get Together as a Team. Families described a variety of situations in which clinicians seemed either misinformed or sent mixed messages about the patient. As one family member said, "You know, if they [clinicians] all could have gotten together and said okay, we are telling this patient this and don’t veer from that until we meet again," it would have been much easier on the family. One family member described a situation in which the family had come to consensus with the attending physician to withdraw life-sustaining treatment. A consulting physician from another service arrived on the scene and proceeded to tell the daughters that they had done the wrong thing and that the patient "basically wasn’t that bad off." The consulting physician then met with the attending physician and later returned to the family and apologized. The family was "disheartened" that the consultant had not read the chart before talking with them and thought that the consultant’s comments were "really inappropriate." Another participant talked about how hard it was for the family to make decisions because they heard from one physician that the patient was dying and from another that the patient’s condition "wasn’t life threatening," and then the original physician called back and said that the patient was doing better. The patient died later that day. This participant noted, "I think they [the physicians] were confused as to what was really happening." Another participant described the difficulty of having to "rehash" information again and again as nurses and physicians rotated in to take care of his loved one. One participant commenting about mixed messages said, "It was a bunch of things where the information was given incorrectly and even when I questioned it [the treatment], saying that that was not what [the physician] said, I was told that [is what] it needs to be." Some families described the dismay or confusion they experienced when they perceived receiving mixed or misinformed messages. A few participants also described that misinformed or mixed messages eroded the trust they had in the clinician. One family member noted that the patient’s family members trusted the attending physician "but we didn’t feel so good about the chief resident, we had a problem with him." When families received inconsistent or seemingly uninformed messages, many sought outside help to figure out what was really going on. Some family members called upon friends with healthcare experience, other clinicians, previous primary care clinicians, and other family members to try to come up with the "correct" information.
Listen to Us. Several family members described that important information they gave or tried to give to clinicians went unheeded, or at least was not acted on. One participant described that what she wanted was a person who would listen to what she had to say "instead of being so rushed that they walk away." Another described telling a clinician that something wasn’t right with his wife and the clinician "just wasn’t listening, he didn’t give a damn." One daughter described feeling as if it was her fault that things were going wrong with her mother, "because no one was listening to us." The daughter described that she could not find a way to get clinicians to heed her concerns about her mother.
| Misinformation or mixed messages eroded the trust families had in clinicians.
|
Several family members reported that when nurses and physicians did not listen to them, things (eg, treatments, deteriorating conditions) happened that should not have happened. One participant described feeling caught between his wife’s wishes and clinicians who seemed to think that honoring his wife’s wishes would be tantamount to murder. He described how "heart wrenching" it was "to see someone so frail with all these tubes" being resuscitated when he knew she did not want that. He said he told the physician that he would "step between the two of you if necessary" and that he "wasn’t going to do this to her any-more." He described that his repeated requests to have a do-not-resuscitate order written in his wife’s chart went unheeded. Consequently, she received treatments that she did not want, and he felt thwarted in his efforts to follow her final wishes.
| Patients’ families felt guilty because the patients’ wishes had not been honored.
|
Another family member described how she explicitly told clinicians not to perform a bronchoscopy on her son without consulting her because he had "suffered enough." However, when she arrived at the hospital the following morning she was "distressed" to find that physicians had done a bronchoscopy without her permission. Another described how it was extremely "frustrating emotionally to feel that we [the family] could not honor her wishes . . . and I felt we were letting her down. To let all this happen to her." Families described the guilt and burden they felt because the patients’ wishes had not been honored, and having those wishes honored had been the family members’ job.
|
Discussion and Implications |
|---|
|
TopAbstractBackgroundMethodsResultsDiscussion and ImplicationsReferences |
|---|
Changes in prognoses are often associated with dramatic changes in treatment plans, for example, shifting from curative to palliative options. These data suggest that the changes were often abrupt and difficult for families, leaving many families searching for explanations. Data from families who described conflict with clinicians also revealed that when these families perceived a seemingly late prognosis or abrupt changes in proffered treatment options, they interpreted this event as evidence that the clinician had been deliberately withholding information from them. This interpretation, whether accurate or not, most likely compounded the conflict and communication difficulties these families experienced while making a difficult decision. The results of this study do not indicate the source of the conflict. Perhaps the families who reported conflict had higher communication needs than did families who did not report conflict, or the clinicians associated with the families who reported conflict handled the communication needs less adeptly than for families who did not report conflict, or changes in prognoses were more rapid than for families who did not experience conflict, or some combination of these created a context ripe for conflict.
Generating an accurate prognosis is a difficult task under the best of conditions. Prognoses, when given, are often inaccurate and overly optimistic.27,37 Evidence in the literature also supports the finding that physicians sometimes delay giving poor prognoses until they are absolutely certain.25 However, reaching an acceptable level of certainty can be difficult, even for patients close to the end of life. Lynn et al38 noted that although the prognosis varied by disease, just 1 week before death the likelihood that the median patient enrolled in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments would survive for 2 months was 51%. Several of the families in conflict accused physicians of deliberately withholding prognostic information. However, in some situations, physicians do not know that patients are going to die imminently.
| Use a "hope for the best" and "prepare for the worst" strategy when communicating with patients’ families.
|
One way to ameliorate the communication difficulties associated with decisions to withdraw treatment is to minimize the abruptness of making such decisions. The science of prognoses will continue to evolve, but clinicians can communicate with patients and patients’ families about the difficulty in making accurate prognoses and begin to offer anticipatory guidance to the families as perceptions of prognoses become less optimistic.39 One possible strategy is to use a "hope for the best" and "prepare for the worst" strategy.40 Engaging patients and their families in dialogue in which clinicians can hope with them about best outcomes and at the same time explore the range of less positive outcomes allows clinicians to acknowledge how sick a patient may be. This strategy allows patients, patients’ families, and clinicians to look at a range of future possibilities, including the possibility that the patient may not survive the hospitalization. The conversation can be revisited on a regular basis, especially as the patient’s prognosis becomes clearer. Regular conversations about hoping for the best but preparing for the worst would allow families and clinicians to give voice to their fears, concerns, and hopes, receive information in a timely manner, promote an open exchange of information, introduce palliative care, increase attention to comfort, and be aware of the possibility that the patient may not survive the hospitalization.
Nothing need be lost by incorporating palliative care options earlier in the treatment plan. Indeed, an earlier more gradual approach toward palliative care can smooth over an often-rough transition. Over time, if it becomes clearer that the patient will not survive, clinicians can continue the gradual process toward increasing the emphasis on palliative treatments and begin decreasing the emphasis on curative treatments while still maintaining hope. Doing so requires excellent communication and foresight on the part of the clinicians. Indeed, the need for skillful communication between and among clinicians and patients’ families is rarely greater than when making a decision to withdraw life-sustaining treatment. The findings from this study highlight the need for clinicians’ continued attention to, and development of, excellent communication skills. The findings also highlight the need for more prospective study of patients’ families, with both observation and interview data, to better understand the circumstances that contribute to the experience of conflict with clinicians during withdrawal of life-sustaining treatment.
|
ACKNOWLEDGMENTS |
|---|
To purchase 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.
|
REFERENCES |
|---|
|
TopAbstractBackgroundMethodsResultsDiscussion and ImplicationsReferences |
|---|
This article has been cited by other articles:
|
|
 |
|
  S. Wingate and D. L.-M. Wiegand End-of-Life Care in the Critical Care Unit for Patients With Heart Failure Crit. Care Nurse, April 1, 2008; 28(2): 84 - 94. [Full Text] [PDF]
|
|
|
|
 |
|
 L. Downey, R. A. Engelberg, S. E. Shannon, and J. R. Curtis Measuring Intensive Care Nurses' Perspectives on Family-Centered End-of-Life Care: Evaluation of 3 Questionnaires Am. J. Crit. Care., November 1, 2006; 15(6): 568 - 579. [Abstract] [Full Text] [PDF]
|
|
|
|
 |
|
 D. L.-M. Wiegand Families and withdrawal of life-sustaining therapy: state of the science. Journal of Family Nursing, May 1, 2006; 12(2): 165 - 184. [Abstract] [PDF]
|
|
|
|
|
|
B. J. Daly End-of-Life Decision Making, Organ Donation, and Critical Care Nurses Crit. Care Nurse, April 1, 2006; 26(2): 78 - 86. [Full Text] [PDF]
|
|
|
|
|
|
D. L.-M. Wiegand Withdrawal of Life-Sustaining Therapy After Sudden, Unexpected Life-Threatening Illness or Injury: Interactions Between Patients' Families, Healthcare Providers, and the Healthcare System Am. J. Crit. Care., March 1, 2006; 15(2): 178 - 187. [Abstract] [Full Text] [PDF]
|
|
|
|
|
|
M. Thelen End-of-Life Decision Making in Intensive Care Crit. Care Nurse, December 1, 2005; 25(6): 28 - 37. [Full Text] [PDF]
|
|
| ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| HOME | HELP | FEEDBACK | SUBSCRIPTIONS | ARCHIVE | SEARCH | TABLE OF CONTENTS |
