How and when do patients request life-expectancy estimates? Evidence from hospice medical consultations and insights for practice

Pino, Marco; Parry, Ruth

doi:10.1016/j.pec.2018.03.026

Cited by 45 publications

(38 citation statements)

References 33 publications

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“…26,27 An example of this was the design of time estimate requests as seeking opinions rather than facts, minimising the apparent burden of the request. 28 A similar finding was seen in Pino and Parry's study of hospice consultations with patients; 29 however, in that study, there was more work to 'prepare the conversational environment' for a prognostic estimate, including doctors checking patients' existing knowledge and readiness. This difference may reflect relatives' stronger entitlement to prognostic information and increased clinician responsibility to provide it at the very end of life.…”

Section: Key Findingssupporting

confidence: 53%

Managing uncertainty and references to time in prognostic conversations with family members at the end of life: A conversation analytic study

et al. 2020

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Background: When patients are likely to die in the coming hours or days, families often want prognostic information. Prognostic uncertainty and a lack of end-of-life communication training make these conversations challenging. Aim: The objective of this study is to understand how clinicians and the relatives/friends of patients at the very end of life manage uncertainty and reference time in prognostic conversations. Design: Conversation analysis of audio-recorded conversations between clinicians and the relatives/friends of hospice inpatients. Setting/participants: Experienced palliative care clinicians and relatives/friends of imminently dying hospice inpatients. Twenty-three recorded conversations involved prognostic talk and were included in the analysis. Results: Requests for prognostic information were initiated by families in the majority of conversations. Clinicians responded using categorical time references such as ‘days’, allowing the provision of prognostic estimates without giving a precise time. Explicit terms such as ‘dying’ were rare during prognostic discussions. Instead, references to time were understood as relating to prognosis. Relatives displayed their awareness of prognostic uncertainty when requesting prognostic information, providing clinicians with ‘permission’ to be uncertain. In response, clinicians often stated their uncertainty explicitly, but presented evidence for their prognostic estimates, based on changes to the patient’s function previously discussed with the family. Conclusion: Prognostic uncertainty was managed collaboratively by clinicians and families. Clinicians were able to provide prognostic estimates while being honest about the related uncertainty, in part because relatives displayed their awareness of uncertainty within their requests. The conversation analytic method identified contributions of both clinicians and families, and identified strategies based on real interactions, which could inform communication training.

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Section: Key Findingssupporting

confidence: 53%

Managing uncertainty and references to time in prognostic conversations with family members at the end of life: A conversation analytic study

et al. 2020

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“…19 Although providing these opportunities does not guarantee a patient or family member will raise illness progression or end of life, there are documented instances where patients take the opportunity to raise these matters. 27,28 Oncology consultations 32,39,60,61 Palliative care 27 Internal medicine 44 Everyday conversations 62 How clinicians seek a patient or family member's perspective about a specific matter All rights reserved. No reuse allowed without permission.…”

Section: How Clinicians Provide Opportunities For Patients or Family mentioning

confidence: 99%

“…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.…”

Section: How Clinicians Provide Opportunities For Patients or Family mentioning

confidence: 99%

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

Ekberg

2020

Preprint

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Background: Pandemics pose significant challenges for healthcare systems, including an increase in difficult discussions about future illness progression and end of life.Objectives: To synthesise existing evidence about communication practices used to discuss difficult matters, including prognosis and end of life, and to use this evidence to make recommendations for clinical practice. The aim of this study was to use rapid review methods to update findings from a previous systematic review published in 2014.Data sources: MEDLINE, EMBASE, CINAHL, PsycINFO, Sociological Abstracts, Web of Science, Scopus, ASSIA and Amed.Study eligibility criteria: Studies using conversation analysis or discourse analysis to examine recordings of actual conversations about difficult matters relating to future illness progression and end of life.Study appraisal and synthesis methods: Data appraisal and extraction procedures used in the 2014 review were modified for this rapid review.Results: Following screening, 18 sources were deemed to meet eligibility criteria, which were added to the 19 sources included in the 2014 systematic review. Synthesis of study findings identified 11 communication practices: providing opportunities for patient or family members to propose matters to discuss (7 out of 37 included sources); seeking a patient or family member's perspective (6/37); discussing the future indirectly (11/37); discussing the future explicitly (7/37) linking to something previously said or done (11/37); using hypothetical scenarios (13/37); framing a difficult matter as universal (5/37); acknowledging uncertainty (3/37); exploring options (2/37); displaying sensitivity (7/37); emphasising the positive (7/37).Limitations: Dividing work amongst the study authors to enable rapid review may have created inconsistencies. Conclusions and implications of key findings:This synthesis of high-quality evidence from actual clinical practice supports a series of recommendations for communicating about difficult matters during and beyond the COVID-19 pandemic. : medRxiv preprint Emphasising positive things, such as what can be done for a patient, can be useful for sustaining hope. When people are discussing difficult matters, however, starting to talk about positive things can end the difficult discussion. For this reason, consider when is the right time to move from the difficult aspects of a discussion, to the more positive dimensions. DiscussionThis rapid review has synthesised findings from studies examining difficult conversations about illness progression and end of life. The review focuses on high-quality evidence delivered by studies examining real-world conversations to understand how specific communication practices function in particular contexts. 14,17,18 Since publication of a systematic review on this topic in 2014, 19 evidence in this area has almost doubled. As reported in Box 1, the synthesis of findings from these studies has enabled the generation of 10 recommendations for clinicians who find themselves needing to discuss diff...

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“…Having identified that nurses caring for liver patients need to be equipped to help support many complex situations, attention to providing the underpinning education and training in communication skills is essential to increase both confidence and competence in having these conversations. Recent developments in conversational analysis have shown that both professionals and patients are hesitant to introduce the topic of end-of-life discussions, for numerous reasons (Pino and Parry, 2018). During consultations, patients are often reluctant to ask for an estimated prognosis or broach the subject of dying, instead waiting for open opportunities to appear.…”

Section: Nurse Trainingmentioning

confidence: 99%

“…During consultations, patients are often reluctant to ask for an estimated prognosis or broach the subject of dying, instead waiting for open opportunities to appear. Patients can be encouraged by understanding their perspective and readiness to hear more (Pino and Parry, 2018). Nurses often fear that raising this topic may not be their role or responsibility, this it is something that all health professionals involved in end-of-life care share responsibility for, and nurses are most suitably placed than other colleagues, being more likely to know their patients and associated loved ones well.…”

Section: Nurse Trainingmentioning

confidence: 99%

Dying from liver disease: the importance of end-of-life discussions

Watson

Mortimore

2018

Gastrointestinal Nursing

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Liver cirrhosis leads to portal hypertension, which carries the complications of ascites, varices and hepatic encephalopathy (HE). Varices Variceal haemorrhage is a major cause of mortality and one of the most distressing complications for patients to experience or loved ones to witness (National Institute for Health and Care Excellence (NICE), 2013). Therefore, people dying from liver disease can have complex end-of-life care needs that require hospital admission to deal with complications.

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How and when do patients request life-expectancy estimates? Evidence from hospice medical consultations and insights for practice

Abstract: Clinicians should be mindful that rather than overtly requesting estimates, patients may seek them more cautiously. Before delivering estimates, doctors can support patients to articulate their existing understanding and perspective regarding prognosis, and their readiness to hear more.

Cited by 45 publications

References 33 publications

Managing uncertainty and references to time in prognostic conversations with family members at the end of life: A conversation analytic study

Managing uncertainty and references to time in prognostic conversations with family members at the end of life: A conversation analytic study

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

Dying from liver disease: the importance of end-of-life discussions

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