Engaging Terminally Ill Patients in End of Life Talk: How Experienced Palliative Medicine Doctors Navigate the Dilemma of Promoting Discussions about Dying

Abstract

ObjectiveTo examine how palliative medicine doctors engage patients in end-of-life (hereon, EoL) talk. To examine whether the practice of “eliciting and responding to cues”, which has been widely advocated in the EoL care literature, promotes EoL talk.DesignConversation analysis of video- and audio-recorded consultations.ParticipantsUnselected terminally ill patients and their companions in consultation with experienced palliative medicine doctors.SettingOutpatient clinic, day therapy clinic, and inpatient unit of a single English hospice.ResultsDoctors most commonly promoted EoL talk through open elaboration solicitations; these created opportunities for patients to introduce–then later further articulate–EoL considerations in such a way that doctors did not overtly ask about EoL matters. Importantly, the wording of elaboration solicitations avoided assuming that patients had EoL concerns. If a patient responded to open elaboration solicitations without introducing EoL considerations, doctors sometimes pursued EoL talk by switching to a less participatory and more presumptive type of solicitation, which suggested the patient might have EoL concerns. These more overt solicitations were used only later in consultations, which indicates that doctors give precedence to patients volunteering EoL considerations, and offer them opportunities to take the lead in initiating EoL talk. There is evidence that doctors treat elaboration of patients’ talk as a resource for engaging them in EoL conversations. However, there are limitations associated with labelling that talk as “cues” as is common in EoL communication contexts. We examine these limitations and propose “possible EoL considerations” as a descriptively more accurate term.ConclusionsThrough communicating–via open elaboration solicitations–in ways that create opportunities for patients to volunteer EoL considerations, doctors navigate a core dilemma in promoting EoL talk: giving patients opportunities to choose whether to engage in conversations about EoL whilst being sensitive to their communication needs, preferences and state of readiness for such dialogue.

Communicating with patients and families about difficult matters: A rapid review in the context of the COVID-19 pandemic

“…36 Also, by first soliciting a patient or family member's perspective, the clinician can then take the patient's or family member's perspective into account when providing their own perspective. 34,63 How clinicians, patients, and family members refer indirectly to the future There are a diverse range of practices that can be used to more or less indirectly refer to illness progression or end of life. The most indirect practices included clinicians alluding to the likelihood of illness progression, such as by stating that current treatment has been exhausted: "I think we've gotten as much as we're going to get from this treatment."…”

“…This is particularly the case when the person being discussed is either involved in the conversation or is a significant for one or more parties to the conversation. 28,32,34,41 How clinicians, patients, and family members refer explicitly to the future In contrast to practices that discuss future deterioration and end of life indirectly, these studies explore instances where such matters are made explicit. On some occasions, discussions about end of life were initiated by clinicians indirectly, and subsequently made explicit by patients.…”

“…On some occasions, discussions about end of life were initiated by clinicians indirectly, and subsequently made explicit by patients. 32,34 In general, clinicians' explicit references to end of life appear to be more common after the matter has been made explicit by patients themselves. 37,38 There are, however, exceptions where clinicians initiate more explicit discussions about illness progression and end of life.…”

“…Sometimes, in instances where patients or family members seem to avoid talking about illness progression or end of life, clinicians can respond by referring to these matters more explicitly, 32,34 such as with: "Do you worry about what's coming?" 34 Another exception is when clinicians explicitly discuss death to promote acceptance of treatment. The following is one such instance: "If we don't do it…it will come back and if it comes back it will be deadly."…”

Communicating with palliative care patients nearing the end of life, their families and carers

“…Pharmacists will need to develop strategies that enable them to deal with these discussions. As recent research has shown, this requires skilful techniques that rely on the patient's use of verbal or non-verbal cues in order to explore the concerns of patients, their relatives or carers in ways that allow patients to raise EoL considerations when they are ready [16] . Where patients wish to nominate a relative or carer to have these discussions, it is important to support their wishes and establish their consent.…”