Ending the End-of-Life Communication Impasse: a dialogic Intervention
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In summary, hospitals and hospices are not the bricks and mortar that make up their structure. They are the conversations and relational contexts that reinforce each other in shaping what can and cannot be discussed without awkwardness or sanction. The hospital and hospice contexts have created a modern dichotomy between cure and death, and in the kinds of conversations that can comfortably be held about these topics. There is significant ambivalence and avoidance on both sides, creating an impasse: Patients say they want to talk about issues related to the dying process and many indicate they want the bad news with the good, but when faced with the crisis, avoid the subject in practice. Physicians also want to engage in these conversations but have several motivations to avoid them as well. As a result, in the aggregate, many patients and providers are stuck in patterns of communication in which patients are likely to be both overly dependent upon professionals for defining their fate and overly optimistic regarding their prognosis. Providers often act as though their patients already know they are dying. Discussions about palliative care and hospice options are functionally blocked. As Bowman notes, there is no consensus on the ethical and/or legal approach to communicating about end of life (2000). In fact, providers and patients are more likely than not to define the end of life period in radically different ways (Kelly, 1997). This communication gap “often causes an impasse that is perceived as an either/or choice, and the opportunity to find creative solutions is diminished” (Bowman, 2000 p. S19). More of the Same is Not the Answer. Some have suggested that more accurate prognosis (Lamont & Christakis, 2001) can move beyond denial and avoidance. Gochman & Bonham (1990) point out that if information about hospice is not provided around the time of the terminal diagnosis, the probability that the patient will make use of hospice care is very small. But this moment is more profound than that. More information is not a reliable solution when patients and providers are determined to interpret each other in ways that avoid the topic of death. There are times when the provider centric knowledge transfer model of communication is extremely useful. It is efficient in its linear simplicity. It justifiably thrives in the curative medical context where providers’ certainty regarding medical interventions are evidence based. However, a terminal diagnosis, which is a medically defined interpretation, is unique in all of medicine in that it offers nothing to cure in a curative context. At this point and beyond no one has definitive knowledge regarding the best plan of care. The provider and the dying patient who continue in a dance of avoidance are unintentionally perpetuating a pattern of over dependence on the one hand and sub-standard palliative care on the other. The patient is over dependent on a provider-defined plan loaded with potentially unnecessary curative services. The result is that attention and resources are shifted away from palliative care. Below, we explain how this is so. UNDERSTANDING THE INTERPERSONAL DYNAMICS OF END OF LIFE COMMUNICATION As the research reviewed above demonstrates, doctors often assume or hope that their patients are aware of their prognosis and so do not dwell on potentially discouraging news. But patients assume that the doctor knows, and take silence on the topic to mean that there is still hope for a medical cure. This creates an impasse in spite of the good intentions of providers and patients. Here, a focus on the intentions and interpretations of the individual provider or patient will do little to break the impasse because the problem is not with either party—it is between them in their jointly produced interaction. Interpersonal Logics. One way out of the impasse is to shift the focus from an individual unit of analysis to an interactional unit of analysis. We find it useful to understand end of life communication by looking to the interpersonal dynamics as the source of the impasse. Specifically we view the impasse as a problem in coordinating competing meanings that frame doctor/patient talk about death (Pearce & Cronen, 1980). This assessment requires an interactional unit of analysis in order to understand the way two or more participants are making sense of a conversation. Based on the Coordinated Management of Meaning (Pearce & Cronen, 1980), the concept of “interpersonal logics” fulfills this requirement. Interpersonal logics are simply a way to account for the juxtaposition of participants’ moment to moment answers to the question “What should I do next?” Each act in a conversation is contingent on the emergent context and on the sorts of outcomes that each speaker hopes to create as a result of the conversation. The resulting actions have an interesting kind of logic in that they are always slightly out of control. No individual controls the way the other will interpret a given action and respond to it. But the resulting conversation is not a random collection of spontaneous acts either. The conversation is a function of the rhetorical obligations each speaker feels in response to the acts of the other. For example, the initial greeting between two strangers has an interpersonal logic that is shared within our culture. It is made up of obligatory reciprocal salutes that guide the joint performance of this ritual. The obligations are so strong for greeting encounters that even the slightest variation (eg. a greeting between friends, is not returned) can lead to awkwardness and even insults if not repaired with a justification accepted by one’s greeting partner. Yet, it is misleading to suggest that the meaning of the failed greeting was determined unilaterally by the actions of the single individual. For example, using an individual unit of analysis to understand this interaction, either greeting partner who breaks a normative greeting rule may be viewed as socially incompetent or uncooperative. But, clearly many friendly greeting patterns involve an unexpected and even superficially insulting response. In contrast, when we use an interpersonal unit of analysis, we can assess the responses as they fit into the larger pattern of conversation, perhaps even including the relationship or cultural pattern. In this case, it is the greeting ritual itself and its fit within the interpersonal system that determines the level of competence and willingness (Harris, 1979) of the participants. A similar observation can be made about the end of life communication impasse. Although the research suggests that patients and providers as individuals are willing to discuss end of life options, these conversations are delayed and are often unsatisfying as a result of the interpersonal logic produced when each responds to the other based on competing interpretations and goals. Because interpersonal logics often produce interactional knots that generate repetitive action, they have also been described in terms of loops. One type of loop is what Cronen, Pearce, and Snavely (1979) describe as an “undesirable repetitive pattern” or “URP.” Their research suggests that people can become locked in undesired patterns of interaction when they feel a strong obligation to respond to a particular communicative act. The response is primarily motivated by the existing situation and what was just said or done. An interesting feature of the undesirable repetitive pattern (URP) is that even as people feel compelled to react, they simultaneously disassociate their own responses from the emerging episode of communication. They feel compelled to respond in a particular way, but they do not experience their voluntary action as either a choice or as an intentional act that was selected to provoke the enactment of the undesirable episode. Communication impasses concerning end of life decisions may exhibit this looped form of interpersonal logic. Doctors and patients may feel a strong obligation to say or do something, yet they may not be aware that in giving what seem to be appropriate responses, they play into a larger interpersonal pattern that neither individual would choose. For example, a doctor trained in medical interventions may feel a strong sense of obligation to offer options consistent with that training. Yet, even after a terminal diagnosis, merely mentioning a possibility for a cure, no matter how remote, can be heard by the patient and family members as an option that must be explored. For their part, the patient and family feel that they cannot walk away from what they interpret as a potential cure. Even when the provider does not provoke this chain of events with the mention of experimental medical interventions, the patient or family may initiate the pattern by asserting that some sort of treatment must be out there. The urge, or what Pearce and Cronen (1980) would call the “logical force” to look for a miraculous medical intervention is an understandable response when patients frame the context of their care as “healing requires curing.” In this context, nearly all statements by the provider have the potential to trigger a sequence of increasingly intrusive medical interventions with little or no attention paid to palliative care and meaningful discussions about the social, psychological and spiritual needs of the dying person. A second type of looped interpersonal logic involves reflexivity between levels of meaning (Cronen, Johnson, & Lannamann, 1982). Unlike the undesirable repetitive patterns described above that subvert the good intentions of communicators, reflexive loops sometimes swallow the whole context in which actions are made meaningful. Cronen et al. (1982) use the term “strange loops” to refer to this form of reflexive loops. Strange loops confound the levels of context communicators use to make sense of their actions. A simple example of a strange loop is the command “be spontaneous.” Here, the logic is looped because the relational context necessary to command another’s action is contradicted by the content of the command. To be spontaneous requires that we not follow another’s directions, yet the other has commanded we do precisely that. A strange loop puts people in a double bind where every action seems to change meaning and none of the options allow an escape from the loop. Trying harder within this logic only roots its participants more firmly in their competing justifications for repeating them as anyone who has told or been told, “You never bring me flowers” can attest. Not all reflexive loops are strange. We rely on contextual clues to understand the meaning of what is said. But, as the examples above illustrate, what is said and done is not just shaped by context—communicative action also shapes that context. When an action confirms or strengthens the expected context, it implies future actions that are consistent with that frame. In this situation, the loop is a self-confirming one and is referred to by Cronen et al. as “charmed.” An example of a charmed loop in the curative context concerns the reflexivity between three levels: the context of cure, the relational context in which the doctor is seen as an expert, and the communicative episode of diagnosis. In this case, the curative context legitimates the doctor as having an expert opinion. The act of diagnosing a patient confirms this expertise and strengthens the contextual frame that gives shape to the entire enterprise as being about finding a cure. We can diagram this charmed loop as follows. The direction of the arrows can be read as a short hand for “means that…” Curative Context ↓ ↑
Doctor is the expert ↓ ↑
Give diagnosis Each element in this charmed loop reinforces the other. In contrast, in a strange loop, one level paradoxically refutes the meaning of the other levels, producing shifts in meaning that can result in confusion, a sense of paralysis, or repetitive attempts to escape the paradox that ultimately continue the vicious cycle. The end of life communication impasse offers one such example of a strange loop. One half of this strange loop looks like the charmed loop described above. In a context of seeking a cure, the doctor is considered an expert who is able to offer medical opinions to diagnose patients. However, offering a terminal diagnosis is a form of medical evaluation that then changes the context. The terminal diagnosis moves the patient from the frame of “seeking cure” to “facing death.” This shifts the relational frame. Stripped of the possibility of offering a medical cure, the doctor is no longer the expert on how to proceed. Authority shifts to the patient who now must decide what to do. But here the loop continues. As we saw in the discussion of the undesirable pattern, the patient and family often feel compelled to seek options and their search for options can re-assert the “seek cure” context that then re-establishes the medical sequence. A temporary charmed loop may follow in which patients endure increasingly intrusive medical interventions, each of which confirms the expertise of the doctor in the medical context until, eventually, the terminal diagnosis is given. The loop becomes strange again until time or money runs out. Editor… an upward diagonal arrow should extend from “Terminal Diagnosis” to “Face Death” and another diagonal arrow should extend from “Patient searches for help” to “Seek cure.”) Strange Loop of Terminal Diagnosis: Seek cure ≠ Face Death ↓ ↓ Dr. is the expert Dr. is not the expert ↓ ↓ Terminal Diagnosis Patient searches for help The result of this strangely looped interpersonal logic can be a desperate pattern of over-dependence on medical technology with too little discussion of palliative care options. Like many paradoxes, the end of life strange loop is held together by a cultural assumption that serves as the over-arching context for the various intertwined levels of meaning. The organizing assumption of this loop is the common sense premise that healing requires curing. Consistent with the historical evolution of hospitals and medical technology, the assumption that healing requires curing locates the physician at the center of decision making discussions and marginalizes the voices of the patient and support givers. When a physician provides a terminal diagnosis, the patient is suddenly thrown into a new context with few signposts for guidance. The bleak choice of seeking a cure or facing death leaves little room for discussing new ways to construct the meaning of care at the end of life. A first step toward ending the end of life communication impasse would be to loosen the grip of the cure or death frame, not by doing more of the same, but by questioning the orienting assumption that healing requires curing. This necessitates a dialogue to open space for new voices and potentially, a new context of healing that is not limited to curing. We propose an intervention in which dying patients and their significant others assume the lead in care planning conversations. This intervention has a broad interdisciplinary theoretical heritage spanning family systems theory, social construction, and complexity sciences which we review briefly below. These approaches feature an interpersonal unit of analysis and highlight dialogue as a central feature of knowledge creation and change. We then discuss the dialogical underpinnings of these approaches to set the stage for a family centered care planning scenario. Theoretical Support Watzlawick, Beavin, and Jackson (1967) and others (Watzlawick, Weakland, & Fisch, 1974; Selvini, Boscolo, & Cecchin, 1980) involved in family systems therapy and organizational change management would argue that to the extent that practitioners and patients are locked into a dysfunctional communication pattern there is little room for change. In fact, therapists often find that they are inducted into the dysfunctional pattern of the family by the compelling interpersonal logic that quickly incorporates attempts to change into a pattern of more of the same. Focussing on trying to change individual behaviours and meanings tends only to perpetuate the problem because the pattern is an interpersonal one. Therapists working in the systems tradition have long used an interpersonal unit of analysis for their understanding of communication, knowledge creation, and change. Social constructionists (Chumbler et al., in press; Harris et al., 2004; McNamee & Gergen, 1999; Shotter, 1993; Potter & Wetherell, 1987) also call attention to the importance of relational processes as the source of meaning and action. Similarly, those working in the tradition of complexity sciences highlight the processual, interdependent nature of knowledge. Stacey (2001, 2003), in describing how people self organize, argues that knowledge “is always a process, and a relational one at that…Knowledge is the act of conversing, and learning occurs when ways of talking and therefore patterns of relationship change.” (p.98). To change the patterns of relationship that characterize the end of life communication impasse, it is necessary to begin new conversations. In the following sections we review a dialogic model used in family therapy and organizational consulting. We then explore the implications of extending this model of communication to the end-of-life setting. A dialogic approach to communication emphasizes the relational quality of understanding and the importance of joint action. It shifts attention away from the idea of knowledge as a commodity that is exchanged between two parties. A dialogic approach does not discount medical expertise and the value of specialized training. Rather, a dialogic approach suggests that to be useful, knowledge must be situated in a relational context. Knowledge becomes useful when it is addressed to someone who makes it relevant through a process of conversational give and take. This is consistent with recent calls by Vanderford et al. (1997) and Ragan et al. (2003) to tap into the meaning making capabilities of patients. The Russian literary critic Bakhtin, one of the pioneers of dialogic thinking, helps us to understand why dialogue is so important at times of crisis. He points out that “understanding is actively responsive” (1986, p. 69). Verbal information is not shared, as a book might be when passed from one friend to another. Rather, spoken words are shaped for the listener who understands them by answering to their call. Speakers, Bakhtin argues, expect “response, agreement, sympathy, objection, execution, and so forth...” (p.69) because these allow a mutual adjustment to and coordination of the emerging flow of conversation. Dialogic understanding seems particularly important in end-of-life care because it opens a space for patients and their communities of support to actively shape the meaning of their lives together. Compared to models of communication that focus on transmission and information exchange, dialogic approaches are less likely to encounter the various barriers that inhibit initiating palliative care because a responsive dialogue requires that each person experience the multiple voices of the other, including both the hopes and fears of those facing a crisis. The dialogic approach is consistent with Balaban’s notion of “fearless healing” which proposes that health professionals listen to and talk about the things that are painful, ‘including patients’ and family members’ suffering and loss (2000). A relationally situated, responsive encounter fosters a kind of understanding that is improvisational, going beyond the either/or interpretive frames of “cure or death” and “medical intervention or comfort”. We expect that improvisational dialogue can help families reorganize around their crisis in ways that are not likely to be considered within the provider/patient dialogue alone. In addition, a dialogic approach to end of life communication recognizes the multiple voices with which patients, doctors, family, and friends speak. Opening space for these multiple voices is the hallmark of a dialogic approach. The Open Dialogue Model Open Dialogue is based upon a dialogic model developed by Finnish psychiatrist, Jaakko Seikkula and his colleagues, (Seikkula, 2002; Seikkula et al, 1995). They have demonstrated the utility of social knowledge construction in their work with patients struggling with psychosis. Drawing on the Bakhtin’s (1986) observations about the dialogic basis of understanding, Seikkula has shifted the traditional focus of medical intervention away from the isolated individual in order to treat the patient as a whole person who is sustained by a larger community. This commitment to understanding the patient as shaped by his or her community requires that Seikkula and his colleagues attempt to bring other voices into the therapeutic dialogue. These “other voices” may include the multiple aspects of the patient whose identity is a composite of many inner voices. The treatment discussion also engages the voices of those other significant people who respond to and define the patient. The result is what Seikkula calls an “Open Dialogue” where the boundaries between the traditional “treatment team” are expanded to include all those who are invested in the patient’s situation. Seikkula observes that when the treatment team is expanded and open dialogue encouraged, “the joint process itself started to determine the treatment, rather than the team itself or the treatment plan of the team” (1995, p. 64). This observation suggests that a similar approach might interrupt the undesirable repetitive patterns characterizing the doctor/patient communication impasse at the end of life. Specifically, adding new voices to the discussion may provide unique resources for a patient in need of options when faced with a terminal diagnosis. Instead of continuing to search for new options only in the curative context of medical care, the patient can begin to explore healing options that are palliative, not just curative. This is an important shift because it diffuses the assumption that healing is limited to curing. When that context is changed, the interpersonal logic of the strange loop of cure or death losses some of its force. Resource Inquiry. Resource inquiry (McNamee, 2004) aims to tap the potential creativity generated in open dialogue processes, particularly when the process involves envisioning possibilities that embrace the strengths of the dialogue participants. It involves asking questions that evoke participants’ creative interpretations. Based upon therapeutic and organizational change experiences we suspect that resource inquiry brings a comforting quality to the creative process. That is, people are comforted when their own meanings are given social life. Resource inquiry is based upon appreciative inquiry which was originally developed for organizational consulting by Cooperrider (1990). This inquiry, based on a reframing of organizational problems, involves asking members of the organization to give voice to times when their commitment to the group was at its greatest, when they felt the organization was at its best. By engaging members in this discussion, Cooperrider is inviting the members to narrate what is possible and to imagine the specific steps that could be taken to construct that future. Though this approach has not yet been widely used to handle the organizational crises families face during end of life care, it is not unreasonable to assume that the same creative energies unleashed when organizations develop positive metaphors to imagine the future can also benefit families searching for ways to make sense of post diagnosis decisions. Through resource inquiry, end of life dialogues can become a context for exploring and appreciating the narrative and interpretive resources that members of the family and friends bring to the situation. It should lead to the collective constructing of future possibilities, some of which will diffuse the logic of the cure or death frame that fuels the patterns of avoidance and delay when it comes to planning for early palliative care. |