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

2020 ◽  
Vol 34 (7) ◽  
pp. 896-905 ◽  
Author(s):  
Rebecca J Anderson ◽  
Patrick C Stone ◽  
Joseph T S Low ◽  
Steven Bloch
Keyword(s):  
End Of Life ◽  
Conversation Analysis ◽  
Communication Training ◽  
Analytic Method ◽  
Prognostic Information ◽  
Reference Time ◽  
The Family ◽  
End Of Life Communication ◽  
Precise Time ◽  
Prognostic Uncertainty

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.

Perinatal hypoxic-ischaemic encephalopathy: a national survey of end-of-life decisions and palliative care

2019 ◽  
pp. bmjspcare-2019-001881 ◽  
Author(s):  
Juan Arnaez ◽  
Nuria Herranz-Rubia ◽  
Alfredo Garcia-Alix
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
End Of Life ◽  
Psychological Support ◽  
National Study ◽  
Prognostic Information ◽  
Cross Sectional ◽  
Grieving Process ◽  
The Family ◽  
Neurological Prognosis

ObjectiveTo explore end-of-life (EoL) decision-making and palliative care in hypoxic-ischaemic encephalopathy (HIE) nationwide.MethodsA cross-sectional national study on moderate-to-severe HIE in newborns ≥35 weeks’ gestational age in 2015, including all 57 level III units that offered hypothermia. Forty-one questions were included to explore how the prognosis is established, as well as timing of the decision-making process, and also how ongoing palliative care is offered.ResultsThe main difficulties in EoL decisions lie in the scarce time to make an early, accurate prognosis. Only 20% shared the neurological prognosis with the parents within 72 hours of life, and in only a third of the centres is the nurse present when the prognostic information is given to the family. Almost 50% do not use protocols to order the EoL process. Practically, all centres (91%) reported taking into account the wishes of the parents. However, in 30% the team does not always reach consensus on how the withdrawal process. Specialised psychological support is available in 54% of the hospitals; in more than 50%, interviews are not arranged to examine the grieving process with parents.ConclusionsThere are four areas for improvement in the comprehensive, multidisciplinary approach to the EoL decision in the patient with HIE: (1) the need for EoL and interdisciplinary palliative care protocols, (2) participation of nurses in the process and improvement in the nurse–physician communication, (3) psychological support for parents involved in the EoL decisions and (4) implementation of strategies to give support during the grieving process.

Systematic mixed-method review of barriers to end-of-life communication in the family context

2020 ◽  
pp. bmjspcare-2020-002219
Author(s):  
Katharina Nagelschmidt ◽  
Nico Leppin ◽  
Carola Seifart ◽  
Winfried Rief ◽  
Pia von Blanckenburg
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
Mixed Method ◽  
Assessment Tools ◽  
Family Context ◽  
Positive Thinking ◽  
The Family ◽  
Life Issues ◽  
End Of Life Issues ◽  
End Of Life Communication

BackgroundCommunication about the end of life is especially important in the family context, as patients and their families are considered as the care unit in palliative care. Open end-of-life communication can positively affect medical, psychological and relational outcomes during the dying process for patient and family. Regardless of the benefits of end-of-life conversations, many patients and their family caregivers speak little about relevant end-of-life issues.AimTo identify barriers that hinder or influence the discussion of end-of-life issues in the family context.DesignA systematic mixed-method review according to Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines.Data sourcesA systematic search of PsycInfo, CINAHL, PubMed and Web of Science was conducted and extended with a hand search. Peer-reviewed primary studies reporting on the barriers to or difficulties in end-of-life conversations experienced by terminally ill patients and/or family caregivers were included in this review.Results18 qualitative and two quantitative studies met the inclusion criteria. The experiences of n=205 patients and n=738 family caregivers were analysed qualitatively; n=293 patients and n=236 caregivers were surveyed in the questionnaire studies. Five overarching categories emerged from the extracted data: emotional, cognitive, communicative, relational and external processes can hinder end-of-life communication within the family. The most frequently reported barriers are emotional and cognitive processes such as protective buffering or belief in positive thinking.ConclusionsResearch on end-of-life communication barriers in the family context is scarce. Further research should enhance the development of appropriate assessment tools and interventions to support families with the challenges experienced regarding end-of-life conversations.

This Is Us: An Analysis of Mediated Family Communication at End-of-Life

2021 ◽  
pp. 003022282110363
Author(s):  
Bonnie M. Nickels ◽  
Kelly E. Tenzek ◽  
Tahleen A. Lattimer
Keyword(s):  
End Of Life ◽  
Family System ◽  
Real Life ◽  
Communication Analysis ◽  
Communication Behaviors ◽  
The Family ◽  
Life Issues ◽  
Popular Television ◽  
The Impact ◽  
End Of Life Communication

Death is a ubiquitous theme in television dramas and we argued that mediated depictions of end-of-life experiences have the potential to provide glimpses into the ways in which characters experience real-life issues and can serve as conversation starters within family viewers. The study aimed to identify how a popular television drama, This is Us, depicted end-of-life communication. Analysis of season one revealed 54 conversations about end-of-life, two explicit death scenes, and three implied death scenes. Results also illustrate how the storyline within the show clearly depicts the impact end-of-life has on the family system, emphasizing the ongoing interdependence, hierarchy, and boundary (re)negotiation as a result of death. Findings advance understanding of how mediated narratives can illustrate end-of-life scenarios and conversations within the family system and can provide observational opportunities for modeling end-of-life communication behaviors within their families.

A communication training perspective on AND versus DNR directives

2014 ◽  
Vol 13 (2) ◽  
pp. 385-387 ◽  
Author(s):  
Tomer T. Levin ◽  
Nessa Coyle
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Communication Training ◽  
Do Not Resuscitate ◽  
Natural Death ◽  
Goals Of Care ◽  
Advantages And Disadvantages ◽  
Randomized Controlled ◽  
Unnatural Death ◽  
End Of Life Communication

AbstractBackground:From a communication perspective, the term “do not resuscitate” (DNR) is challenging to use in end-of-life discussions because it omits the goals of care. An alternative, “Allow Natural Death” (AND), has been proposed as a better way of framing this palliative care discussion.Case:We present a case where a nurse unsuccessfully discusses end-of-life goals of care using the term DNR. Subsequently, with the aid of a communication trainer, he is coached to successfully use the term “AND” to facilitate this discussion and advance his goal of palliative care communication and planning.Discussion:We contrast the advantages and disadvantages of the term AND from the communication training perspective and suggest that AND-framing language replace DNR as a better way to facilitate meaningful end-of-life communication. One well-designed, randomized, controlled simulation study supports this practice. We also consider the communication implications of “natural” versus “unnatural” death.

scholarly journals Family caregiver emotional distress in advanced cancer: the DME-C scale psychometric properties

2020 ◽  
pp. bmjspcare-2020-002608
Author(s):  
Joaquín T Limonero ◽  
Jorge Maté-Méndez ◽  
María José Gómez-Romero ◽  
Dolors Mateo-Ortega ◽  
Jesús González-Barboteo ◽  
...  
Keyword(s):  
Psychometric Properties ◽  
End Of Life ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Emotional Distress ◽  
Family Caregiver ◽  
Screening Tools ◽  
Anxiety And Depression ◽  
The Family ◽  
End Stage

BackgroundFamily caregivers of patients with advanced illness at end of life often report high levels of emotional distress. To address this emotional distress is necessary to have adequate and reliable screening tools.AimThis study analyses the psychometric properties and clinical utility of the Family Caregiver Emotional Detection Scale for caregivers of patients with end-stage cancer (DME-C, Spanish acronym) who are receiving palliative care (PC).DesignMulticentre, cross-sectional study.Settings/participantsFamily caregivers of patients with advanced cancer at end of life receiving palliative treatment were interviewed to explore their emotional distress through the DME-C scale and other instruments measuring anxiety and depression (Hospital Anxiety and Depression Scale (HADS)), distress thermometer (DT) and overload (B), as well as a clinical psychological assessment (CPA).Results138 family caregivers, 85 (61.6%) female and 53 (38.4%) male, with an average age of 59.69±13.3 participated in the study. The reliability of the scale, as measured by Cronbach’s alpha, was 0.76, and its stability over time was 0.734. Positive, significant correlations were found between the DME-C and the scores for anxiety and depression registered on the HADS scale, as well as with the total result of this latter scale and the results for B, the DT and the CPA. A statistical analysis of the receiver-operating characteristic curves showed that the scale has a sensitivity and specificity of 75%, and that the cut-off point for the detection of emotional distress was a score ≥11. Fifty-four per cent of the caregivers displayed emotional distress according to this scale.ConclusionsThe DME-C displays good psychometric properties. It is simple, short, reliable and easy to administer. We believe that the instrument is useful for the detection of emotional distress in the family caregivers of hospitalised patients suffering from end-stage illnesses and receiving PC.

Psychometric analysis of the Comfort with Communication in Palliative and End-of-Life Care (C-COPE) instrument

2020 ◽  
Vol 26 (8) ◽  
pp. 404-412
Author(s):  
Mary E Minton ◽  
Mary J Isaacson ◽  
Patricia Da Rosa
Keyword(s):  
End Of Life ◽  
Content Validity ◽  
End Of Life Care ◽  
Life Care ◽  
Validity Index ◽  
Retest Reliability ◽  
Five Factors ◽  
Instrument Measuring ◽  
Test Retest Reliability ◽  
End Of Life Communication

Background: Nurses must be comfortable facilitating palliative and end-of-life communication with patients and their families. Aim: A validated instrument measuring the comfort of nurses with conducting end-of-life communication is essential for meeting the goals and wishes of patient care. This study aimed to develop and conduct a psychometric evaluation of the Comfort with Communication in Palliative and End-of-Life Care (C-COPE) instrument. Methods: Face, content, and construct validity, including test-retest reliability, were conducted. Results: Four experts subjectively confirmed face content validity and the quantitative item content validity index (I-CVI) ranged from 0.67 to 1 and scale content validity index (S-CVI/Ave) was 0.98. Principal axis factoring with Promax rotation yielded a five-factor solution accounting for 66.2% of the variance. The items loading on the five factors ranged from 0.46–0.96 (factor 1), 0.67–0.93 (factor 2), 0.49–0.86 (factor 3), 0.68–0.79 (factor 4), and 0.24–0.96 (factor 5). Internal consistency reliability (coefficient a) was 0.90 for the total C-COPE, and above 0.75 for each factor. The five factors are ‘cultural/spiritual considerations,’ ‘team considerations,’ ‘addressing decision-making,’ ‘addressing symptomatology,’ and ‘deliberate awareness.’ Test-retest reliability yielded an intraclass correlation coefficient (ICC) of 0.87 (CI 95%, 0.82–0.91). Conclusions: The C-COPE is a reliable and valid instrument measuring nurse comfort with palliative and end of-life care communication, yet requires testing in more diverse samples.

scholarly journals How Do Patients with Life-Limiting Illness and Caregivers Want End-Of-Life Prognostic Information Delivered? A Pilot Study

Healthcare ◽  
2021 ◽  
Vol 9 (7) ◽  
pp. 784
Author(s):  
Ebony T. Lewis ◽  
Kathrine A. Hammill ◽  
Maree Ticehurst ◽  
Robin M. Turner ◽  
Sally Greenaway ◽  
...  
Keyword(s):  
Older Adults ◽  
Pilot Study ◽  
Health Services ◽  
End Of Life ◽  
Older Patients ◽  
Prognostic Information ◽  
Clinical Scenarios ◽  
Delivery Format ◽  
Patient Groups ◽  
To Receive

We aimed to identify the level of prognostic disclosure, type of prognostic information and delivery format of prognostic communication that older adults diagnosed with a life-limiting illness or caregivers prefer to receive. We developed and pilot tested an open-ended survey to 15 older patients and caregivers who had experience in health services for life-limiting illness either for a relative, friend or themselves. Five hypothetical clinical scenarios of prognostic options were presented to ascertain preferences. The preferred format to receive prognostic information was verbal delivery by the clinician with a written summary. Photos and videos were less favoured, and a table with numbers/percentages was least preferred. Distress levels to the prognostic scenarios were low, with the exception of a photo. We conclude that older patients/caregivers want end-of-life prognostic information delivered the traditional way, verbally by clinicians. Options to deliver prognostic information may vary across patient groups but empower clinicians in introducing end-of-life discussions with patients/caregivers. Our study illustrates the feasibility of involving terminal patients and caregivers in research that contributes to eliciting prognostic preferences. Further research is needed to understand whether the prognostic preferences of hospitalized patients with life-limiting illness differ.

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