Inter-physician variability in strategies linked to treatment limitations after severe traumatic brain injury; proactivity or wait-and-see

Background Prognostic uncertainty is a challenge for physicians in the neuro intensive care field. Questions about whether continued life-sustaining treatment is in a patient’s best interests arise in different phases after a severe traumatic brain injury. In-depth information about how physicians deal with ethical issues in different contexts is lacking. The purpose of this study was to seek insight into clinicians’ strategies concerning unresolved prognostic uncertainty and their ethical reasoning on the issue of limitation of life-sustaining treatment in patients with minimal or no signs of neurological improvement after severe traumatic brain injury in the later trauma hospital phase. Methods Interviews with 18 physicians working in a neurointensive care unit in a large Norwegian trauma hospital, followed by a qualitative thematic analysis focused on physicians’ strategies related to treatment-limiting decision-making. Results A divide between proactive and wait-and-see strategies emerged. Notwithstanding the hospital’s strong team culture, inter-physician variability with regard to ethical reasoning and preferred strategies was exposed. All the physicians emphasized the importance of team—family interactions. Nevertheless, their strategies differed: (1) The proactive physicians were open to consider limitations of life-sustaining treatment when the prognosis was grim. They initiated ethical discussions, took leadership in clarification and deliberation processes regarding goals and options, saw themselves as guides for the families and believed in the necessity to prepare families for both best-case and worst-case scenarios. (2) The “wait-and-see” physicians preferred open-ended treatment (no limitations). Neurologically injured patients need time to uncover their true recovery potential, they argued. They often avoided talking to the family about dying or other worst-case scenarios during this phase. Conclusions Depending on the individual physician in charge, ethical issues may rest unresolved or not addressed in the later trauma hospital phase. Nevertheless, team collaboration serves to mitigate inter-physician variability. There are problems and pitfalls to be aware of related to both proactive and wait-and-see approaches. The timing of best-interest discussions and treatment-limiting decisions remain challenging after severe traumatic brain injury. Routines for timely and open discussions with families about the range of ethically reasonable options need to be strengthened.

Inter-physician variability in strategies linked to treatment limitations after severe traumatic brain injury; proactivity or wait-and-see

Background Prognostic uncertainty is a challenge for physicians in the neuro intensive care field. Questions about whether continued life-sustaining treatment is in a patient’s best interests arise in different phases after a severe traumatic brain injury. In-depth information about how physicians deal with ethical issues in different contexts is lacking. The purpose of this study was to seek insight into clinicians’ strategies concerning unresolved prognostic uncertainty and their ethical reasoning on the issue of limitation of life-sustaining treatment in patients with minimal or no signs of neurological improvement after severe traumatic brain injury in the later trauma hospital phase. Methods Interviews with 18 physicians working in a neurointensive care unit in a large Norwegian trauma hospital, followed by a qualitative thematic analysis focused on physicians’ strategies related to treatment-limiting decision-making. Results A divide between proactive and wait-and-see strategies emerged. Notwithstanding the hospital’s strong team culture, inter-physician variability with regard to ethical reasoning and preferred strategies was exposed. All the physicians emphasized the importance of team – family interactions. Nevertheless, their strategies differed: (1) The proactive physicians were open to consider limitations of life-sustaining treatment when the prognosis was grim. They initiated ethical discussions, took leadership in clarification and deliberation processes regarding goals and options, saw themselves as guides for the families and believed in the necessity to prepare families for both best-case and worst-case scenarios. (2) The “wait-and-see” physicians preferred open-ended treatment (no limitations). Neurologically injured patients need time to uncover their true recovery potential, they argued. They often avoided talking to the family about dying or other worst-case scenarios during this phase. Conclusions Depending on the individual physician in charge, ethical issues may rest unresolved or not addressed in the later trauma hospital phase. Nevertheless, team collaboration serves to mitigate inter-physician variability. There are problems and pitfalls to be aware of related to both proactive and wait-and-see approaches. The timing of best-interest discussions and treatment-limiting decisions remain challenging after severe traumatic brain injury. Routines for timely and open discussions with families about the range of ethically reasonable options need to be strengthened.Trial registration: Not applicable

Cause or Effect? The Role of Prognostic Uncertainty in the Fear of Cancer Recurrence

BackgroundFear of cancer recurrence (FCR) is an important cause of suffering for cancer survivors, and both empirical evidence and theoretical models suggest that prognostic uncertainty plays a causal role in its development. However, the relationship between prognostic uncertainty and FCR is incompletely understood.ObjectiveTo explore the relationship between prognostic uncertainty and FCR among patients with ovarian cancer (OC).DesignA qualitative study was conducted utilizing individual in-depth interviews with a convenience sample of patients with epithelial ovarian cancer who had completed first-line treatment with surgery and/or chemotherapy. Semi-structured interviews explored participants’ (1) understanding of their prognosis; (2) experiences, preferences, and attitudes regarding prognostic information; and (3) strategies for coping with prognostic uncertainty. Inductive qualitative analysis and line-by-line software-assisted coding of interview transcripts was conducted to identify key themes and generate theoretical insights on the relationship between prognostic uncertainty and FCR.ResultsThe study sample consisted of 21 participants, nearly all of whom reported experiencing significant FCR, which they traced to an awareness of the possibility of a bad outcome. Some participants valued and pursued prognostic information as a means of coping with this awareness, suggesting that prognostic uncertainty causes FCR. However, most participants acknowledged fundamental limits to both the certainty and value of prognostic information, and engaged in various strategies aimed not at reducing but constructing and maintaining prognostic uncertainty as a means of sustaining hope in the possibility of a good outcome. Participants’ comments suggested that prognostic uncertainty, fear, and hope are connected by complex, bi-directional causal pathways mediated by processes that allow patients to cope with, construct, and maintain their uncertainty. A provisional dual-process theoretical model was developed to capture these pathways.ConclusionAmong patients with OC, prognostic uncertainty is both a cause and an effect of FCR—a fear-inducing stimulus and a hope-sustaining response constructed and maintained through various strategies. More work is needed to elucidate the relationships between prognostic uncertainty, fear, and hope, to validate and refine our theoretical model, and to develop interventions to help patients with OC and other serious illnesses to achieve an optimal balance between these states.

“I Want That Life a Lot…How on Earth Do I Get That?” Examining Challenges for Men With Barth Syndrome in Their Transitions to Adulthood

vFor youth with life-limiting chronic illnesses, transitioning to adulthood in line with age-norms may be difficult due to symptom severity and shortened survival. This study explores whether individuals with Barth syndrome (BTHS), a condition uniquely characterized by extreme prognostic uncertainty, experience similar or different challenges compared to youth with other conditions. During focus groups with adults with BTHS ( n = 12) and caregivers ( n = 13), participants reported that the ability to independently manage one’s health condition, the social/emotional impacts of BTHS, and the ability to set goals in the context of future uncertainty challenge their transition to adulthood. This aligns with prior research, indicating that prognostic uncertainty may hinder long-term goal setting in BTHS. Implications of these findings include providing strategies for identifying meaningful alternative goals for individuals with chronic illnesses to target, promoting increased autonomy earlier in youth, and fostering coping strategies to manage non-disease related impacts.

Inter-Physician Variability in Strategies Linked to Treatment Limitations After Severe Traumatic Brain Injury: Proactivity or wait-and-see

BackgroundPrognostic uncertainty is a major challenge for physicians working in the neuro intensive care field. Questions about whether continued life-sustaining treatment is in a patient’s best interest arise in different phases after a severe traumatic brain injury. In-depth information about how physicians deal with ethical issues in different contexts is lacking. The purpose of this study was to seek insight into clinicians’ strategies concerning prognostic uncertainty and their ethical reasoning on the issue of limitation of life-sustaining treatment after severe traumatic brain injury in the later trauma hospital phase. Methods Interviews with 18 physicians working in a neurointensive care unit in a large Norwegian trauma hospital, followed by a qualitative thematic analysis focused on physicians’ strategies related to treatment-limiting decision-making in patients with severe traumatic brain injury in the later trauma hospital phase. ResultsA divide between proactive and wait-and-see strategies emerged. Notwithstanding the hospital’s strong team culture, inter-physician variability with regard to ethical reasoning and preferred strategies was exposed. All the physicians emphasized the importance of team – family interactions. Nevertheless, their strategies differed: (1) The proactive physicians were open to considering limitations of life-sustaining treatment when the prognosis was grim. They were often the ones who initiated ethical discussions and took leadership in clarification and deliberation processes. They saw themselves as guides for the families and believed both preparation for best-case and worst-case scenarios to be of value. (2) The “wait-and-see” physicians preferred open-ended treatment (no limitations). Neurologically injured patients need time to uncover their true recovery potential, they argued. They often avoided talking to the family about dying or other worst-case scenarios. ConclusionsDepending on the individual physician in charge, ethical issues may rest unresolved or not addressed in the later trauma hospital phase. Nevertheless, team collaboration serves to mitigate inter-physician variability. The timing of best-interest discussions and treatment-limiting decisions remain challenging after severe traumatic brain injury. Routines for timely and open discussions with families about the range of ethically reasonable options need to be strengthened.Trial registration: Not applicable

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

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.