Communication about Prognosis during Patient-Initiated Second Opinion Consultations in Advanced Cancer Care: An Observational Qualitative Analysis

Velden, Naomi C.A. van der; Kleij, M. B. A. van der; Lehmann, Vicky; Smets, Ellen M. A.; Stouthard, Jacqueline; Hillen, Marij A.

doi:10.3390/ijerph18115694

Cited by 13 publications

(9 citation statements)

References 76 publications

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“…This suggests that prognostic discordance may be overlooked, which could hamper patients’ informed treatment and end-of-life decision-making. 16 , 53 , 85 , 86 …”

Section: Discussionmentioning

confidence: 99%

Prevalence and Predictors of Physician-Patient Discordance in Prognostic Perceptions in Advanced Cancer

et al. 2023

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Background Discordance between physicians’ and patients’ prognostic perceptions in advanced cancer care threatens informed medical decision-making and end-of-life preparation, yet this phenomenon is poorly understood. We sought to: (1) describe the extent and direction of prognostic discordance, patients’ prognostic information preferences in cases of prognostic discordance, and physicians’ awareness of prognostic discordance; and (2) examine which patient, physician, and caregiver factors predict prognostic discordance. Materials and Methods Oncologists and advanced cancer patients (median survival ≤12 months; n = 515) from 7 Dutch hospitals completed structured surveys in a cross-sectional study. Prognostic discordance was operationalized by comparing physicians’ and patients’ perceptions of the likelihood of cure, 2-year mortality risk, and 1-year mortality risk. Results Prognostic discordance occurred in 20% (likelihood of cure), 24%, and 35% (2-year and 1-year mortality risk) of physician-patient dyads, most often involving patients with more optimistic perceptions than their physician. Among patients demonstrating prognostic discordance, the proportion who preferred not knowing prognosis varied from 7% (likelihood of cure) to 37% (1-year mortality risk), and 45% (2-year mortality risk). Agreement between physician-perceived and observed prognostic discordance or concordance was poor (kappa = 0.186). Prognostic discordance was associated with several patient factors (stronger fighting spirit, self-reported absence of prognostic discussions, an information source other than the healthcare provider), and greater physician-reported uncertainty about prognosis. Conclusion Up to one-third of the patients perceive prognosis discordantly from their physician, among whom a substantial proportion prefers not knowing prognosis. Most physicians lack awareness of prognostic discordance, raising the need to explore patients’ prognostic information preferences and perceptions, and to tailor prognostic communication.

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“…This suggests that prognostic discordance may be overlooked, which could hamper patients’ informed treatment and end-of-life decision-making. 16 , 53 , 85 , 86 …”

Section: Discussionmentioning

confidence: 99%

Prevalence and Predictors of Physician-Patient Discordance in Prognostic Perceptions in Advanced Cancer

et al. 2023

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“…Considering that patients’ readiness for prognostic discussions could evolve over time, physicians may need to explore patients’ prognostic information preferences repeatedly (e.g., “Some people like to know everything about their illness and what may happen in the future, others prefer not to know too many details. How much would you like to know about your prognosis right now?”; “With regards to your prognosis, have I given you the information you need so far?”) [ 69 – 72 ]. While a patient’s unchanged preference for unawareness should be respected, physicians can consider negotiating for limited prognostic disclosure to assure informed decisions about the best possible (future) care [ 24 , 69 ].…”

Section: Discussionmentioning

confidence: 99%

“…"; "With regards to your prognosis, have I given you the information you need so far?") [69][70][71][72]. While a patient's unchanged preference for unawareness should be respected, physicians can consider negotiating for limited prognostic disclosure to assure informed decisions about the best possible (future) care [24,69].…”

Section: What This Study Addsmentioning

confidence: 99%

Characteristics of patients with advanced cancer preferring not to know prognosis: a multicenter survey study

et al. 2022

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Background For some patients with advanced cancer not knowing prognosis is essential. Yet, in an era of informed decision-making, the potential protective function of unawareness is easily overlooked. We aimed to investigate 1) the proportion of advanced cancer patients preferring not to know prognosis; 2) the reasons underlying patients’ prognostic information preference; 3) the characteristics associated with patients’ prognostic information preference; and 4) the concordance between physicians’ perceived and patients’ actual prognostic information preference. Methods This is a cross-sectional study with structured surveys (PROSPECT). Medical and thoracic oncologists included patients (n = 524), from seven Dutch hospitals, with metastatic/inoperable cancer and an expected median overall survival of ≤ 12 months. For analysis, descriptive statistics and logistic regression models were used. Results Twenty-five to 31% of patients preferred not to know a general life expectancy estimate or the 5/2/1-year mortality risk. Compared to patients preferring to know prognosis, patients preferring unawareness more often reported optimism, avoidance and inability to comprehend information as reasons for wanting limited information; and less often reported expectations of others, anxiety, autonomy and a sense of control as reasons for wanting complete information. Females (p < .05), patients receiving a further line of systemic treatment (p < .01) and patients with strong fighting spirit (p < .001) were more likely to prefer not to know prognosis. Concordance between physicians’ perceived and patients’ actual prognostic information preference was poor (kappa = 0.07). Conclusions We encourage physicians to explore patients’ prognostic information preferences and the underlying reasons explicitly, enabling individually tailored communication. Future studies may investigate changes in patients’ prognostic information preferences over time and examine the impact of prognostic disclosure on patients who prefer unawareness.

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“…when patients become sicker). 104,105 Repeatedly exploring patients' preferences can be helpful, 106,107 while future studies can explore (using longitudinal methods) how patients' needs change during the disease process. 108 Moreover, we could speculate that when patients enter the incurable phase of their illness, their information and decision needs shift toward a "what matters most" approach, 102,109,110 in which it is not always necessary to discuss all information and options.…”

Section: Discussionmentioning

confidence: 99%

Harmful communication behaviors in cancer care: A systematic review of patients and family caregivers perspectives

Westendorp,

Geerse,

van der Lee

et al. 2023

Psycho-Oncology

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ObjectiveIssues regarding clinician communication remain an important source of complaints within healthcare. This systematic review aims to determine cancer patients' and their family caregivers' views on which clinicians' communication behaviors can harm (i.e. eliciting negative feelings/consequences for patients/family caregivers).MethodsWe searched for all types of peer‐reviewed studies that determined adult (≥18 years) cancer patients' and/or family caregivers' perspectives on which clinicians' communication behaviors can harm in several databases (PubMed, Embase, Web of Science, Cochrane Library, Emcare, PsycINFO and Academic Search Premier), supplemented by expert‐consultation. Studies were screened using the Artificial intelligence screening tool of ASReview and data was analyzed using Thematic Analysis. To assess the quality of the studies the Qualsyst critical appraisal tool was used.ResultsA total of 47 studies were included. Four main themes of harmful communication behaviors were identified: (1) Lack of tailored information provision (e.g. giving too little or too much/specific information) (2) Lack of tailored decision making (ranging from; patient exclusion, to the patients' responsibility, and/or haste) (3) Lack of feeling seen and heard (seen as a disease, not as a human being; not listened to concerns and emotions) (4) Lack of feeling held and remembered (forgotten agreements; lack of care continuity).ConclusionsOur results reveal an overview of patients' and family caregivers' perspectives on which clinicians' communication behaviors can harm. Harm could be prevented when information and decision involvement are tailored and patients' and family caregivers' needs to feel seen, heard, held and remembered are met.

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Communication about Prognosis during Patient-Initiated Second Opinion Consultations in Advanced Cancer Care: An Observational Qualitative Analysis

Cited by 13 publications

References 76 publications

Prevalence and Predictors of Physician-Patient Discordance in Prognostic Perceptions in Advanced Cancer

Prevalence and Predictors of Physician-Patient Discordance in Prognostic Perceptions in Advanced Cancer

Characteristics of patients with advanced cancer preferring not to know prognosis: a multicenter survey study

Harmful communication behaviors in cancer care: A systematic review of patients and family caregivers perspectives

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