Ending the End-of-Life Communication Impasse: a dialogic Intervention
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Family Centered Care Planning Scenario We have characterized the end of life communication impasse as caused by a paradoxical interpersonal logic which is both guiding and justifying unintentional avoidance of talk about the implications of a terminal diagnosis. Our synthesis of this patterned discourse suggests a conflicting set of rhetorical obligations (Don’t tell/Don’t ask) constrain providers and patients to talk about curative care, while avoiding talk about palliative care. Breaking Through. We envision an intervention scenario that would be triggered by a life threatening diagnosis. This is in line with the recommendations of the World Health Organization which has re-conceptualized and re-defined palliative care to begin at the time a diagnosis of illness is made. Likewise, Wenrich et al. (2001) suggests that the most appropriate time to consider all care options is at the time a terminal condition is diagnosed. Following Seikkula et al. (1995), we propose the doctor organize a family care planning open dialogue in which the patient is asked to choose those family members, friends and providers he or she would like to have included in the discussion. We expect that this will subtly shift the logic of the undesirable repetitive pattern that constrains doctor patient communication. The prescription by the doctor for an open dialogue plays into the “doctor is the expert” relational context, but the very structure of the open dialogue diffuses this authority and opens the possibility for creating novel responses to the crisis. Used this way, the Open Dialogue model is consistent with evidence that patients want to include others in their conversations at this time (Johnston et al., 2003). All dialogue participants would be invited to offer possibilities for diagnosis, prognosis and future care options, and to respond to the possibilities offered by others. The knowledge regarding how to proceed reflects a dialogic understanding of the crisis; that is, a way of knowing what to do that is unique to each patient’s support community. This would differ from the current format of the conventional family conference in that we expect process, not the doctor to determine the agenda. In a fully responsive and open dialogue, no one leads the conversation. Instead, each participant responds to the emerging conversation in a way the gives voice to his or her concerns. This means that values will emerge as a function of the dialogue rather than being “discovered”. As Bateson and his family illustrated, family dialogue and palliative care can become one in the same when care becomes a ritual, even at the time of death. A persistent theme in Bateson’s writing is that meaning, quality, and beauty are possible only in the context of a pattern of connections. In that sense, the meaning and quality of his end of life experience was a continuation of his pattern of living. For families who already have an open, dialogic form of patterned communication, the practice of planning care options will simply provide a platform for them to continue co-creating futures. For families who have not learned to perform meaning creation rituals, the Open Dialogue at the time of diagnosis could usher in their first forms of therapeutic communication and may allow them to create comforting rituals before and after the end of a loved one’s life. To the extent that the open dialogue model allows the construction of narratives that continue long after the initial meeting, there is, we believe, even a place for family conversational rituals among the survivors after a death because a life “carries on in a narrative sense, long after the physical body is dead” (Hedtke & Winslade, 2004, p. 199). The barriers that inhibit an early discussion of the patient’s prognosis and other end of life concerns are powerful in the context of cure or death, but when healing is expanded to include both the biomedical subject and the social subject, healing is no longer limited to cures. This suggests that dialogic interventions offer a way out of the paradox of end of life communication consistent with Cicely Saunders’ declaration that “We don’t have to cure to heal.” Based upon the theoretical models above we propose that the dialogic intervention will have the following impact:
CONCLUSION We opened this chapter by asking: “In what context can timely death preparations reliably occur?” We have argued that within the curative context, doctor led conversations about death are very difficult to come about. We have also tried to make the case that in the unique instance in which the doctor believes the patient has a terminal condition, post diagnosis planning conversations are best led by the patients and their self selected support communities. We do not attempt to predict specific words that will be spoken to break through the end of life communication in this newly formed family context. We do expect that new ways of relating will yield new ways of knowing and doing that will become more precious to the participants than curative technologies. Reference Page 1Bakhtin, M. M., Holquist, M., & Emerson, C. (1986). Speech genres and other late essays. Austin: University of Texas Press. Balaban, R.B. (2000). A physician’s guide to talking about end-of-life care. 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