The patient who ‘must not be told’: demographic factors associated with collusion in a retrospective study in South India

Jeba, Jenifer; Jacob, Annie; Kandasamy, Ramu; George, Reena

doi:10.1136/postgradmedj-2015-133850

Cited by 7 publications

(9 citation statements)

References 17 publications

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“…Prior studies have shown that 37% of advanced cancer patients in India had their prognosis withheld by family caregivers with resulting poorer QoL, and that those with poorer education were more likely to have prognosis withheld 31 . Collusion between professionals and families in India leads to prognosis being initially concealed for 40% of advanced cancer patients 32 . Our model illustrates the mechanisms and sequalae of these prior findings.…”

Section: Discussionmentioning

confidence: 57%

“…31 Collusion between professionals and families in India leads to prognosis being initially concealed for 40% of advanced cancer patients. 32 Our model illustrates the mechanisms and sequalae of these prior findings. Due to the well-recognized common challenges of late cancer presentation in India, the model addresses health literacy in relation to both diagnosis and prognosis.…”

Section: Discussionmentioning

confidence: 71%

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Health literacy in communication, decision‐making and outcomes among cancer patients, their families and clinicians in India: A multicentre cross‐sectional qualitative study

2021

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Objective Cancer patients in India prefer full information regarding diagnosis and prognosis, but evidence suggests poor insight. This study aimed to identify the role of health literacy among adult patients living with cancer, their families and health professionals in decision‐making and treatment outcomes in India. Methods This cross‐sectional in‐depth study recruited patients, families and clinicians from three centers. Inductive thematic analysis informed a novel conceptual model. Results We recruited n = 34 cancer patients, n = 33 family members, n = 11 doctors and n = 14 nurses (N = 92). Principle emergent themes were the following: (1) Preferences and dynamics of diagnosis and prognosis disclosure, for example, the dominant preference was for families who held hope for cure to discourage disclosure; clinicians sometimes disclosed in line with perceived ability to pay for treatment. (2) Understanding of disease and its treatment options (etiology, potential trajectory, treatment options), for example, lay understandings of cancer etiology as contamination from outside the home, and reluctance of patients to ask questions of clinicians. (3) Priorities in decision‐making, for example, not engaging patients due to fear of patient distress, patients initiated on anticancer treatments without knowledge or consent, pursuing futile treatments. (4) Anxieties over finances and outcomes (disclosure, decision‐making, care pathways), for example, clinicians attempting to reduce families pursuing expensive and inappropriate treatment options with patients who have poor insight, catastrophic spending based on poor decisions. Conclusion The novel evidence‐based health literacy model offers potential for feasible and acceptable intervention to support families in communication, disclosure and decision‐making. This may improve patients' access to informed, appropriate care pathways.

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Section: Discussionmentioning

confidence: 57%

Section: Discussionmentioning

confidence: 71%

Health literacy in communication, decision‐making and outcomes among cancer patients, their families and clinicians in India: A multicentre cross‐sectional qualitative study

2021

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“…Full texts of 126 articles were screened. A total of 27 studies fulfilled eligibility criteria and were thus eligible for inclusion in this systematic review and meta‐analysis 2,3,8‐32 . Table 1 shows the characteristics of included studies with the prevalence of collusion.…”

Section: Resultsmentioning

confidence: 99%

Prevalence of collusion in cancer communications: A meta‐analysis

2021

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Introduction Collusion is the non‐disclosure of information about diagnosis or prognosis, frequently encountered in cancer care and palliative services. Unraveling collusion is a skill and differences among communication techniques by Health Care Workers have maintained the process of non‐disclosure to patients and caregivers. Identifying the prevalence of collusion in cancer care is required to improve the existing strategies across the world. Methods A systematic review of the literature from 1991 to 2020 in the English language was conducted with the protocol registration on PROSPERO ID (CRD 42021249216.) to identify the pooled prevalence of collusion. Results By using random effect model, the pooled prevalence estimate among patients for the diagnostic and prognostic collusion was 24.15, (95% CI [17.09; 32.96], Tou2 = 1.0801, I2 = 97.9%, Cochran's Q = 1058.22, df = 21, p‐value < 0.001) and 37.92, (95% CI [22.46; 56.30], Tou2 = 1.9641, I2 = 98.6%, Cochran's Q = 944.26, df = 13, p‐value < 0.001) respectively. There was no difference across subgroups with different types of setting for the interview, WHO regions and trend over the years. Conclusions Substantial prevalence of collusion goes unnoticed in cancer care. A meaningful understanding of such a large prevalence requires inquiry into the existing communication paradigm in cancer care across the world. The findings also question the need of formulating uniform interview techniques and structured assessment tools or questionnaires in cancer care to improve the disclosure rates.

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“…It is better to not give false optimism and screen for psychological distress more than syndromal diagnosis. [5] Each clinician can formulate words and phrases that capture paradox of uncertainty to sustain hope and honesty which might require certain level of communication skills in breaking bad news and dealing with collusion. After all, unraveling of the collusion can also help us to divert focus from body to soul and fits well in definition of healing in the Indian context.…”

Section: Discussionmentioning

confidence: 99%

“…Based on the cultural context, collusion is divided into cultural collusion and familial collusion. [5]…”

Section: Introductionmentioning

confidence: 99%

A qualitative study to assess collusion and psychological distress in cancer patients

Sutar

Chandra

Seshachar

et al. 2019

Indian J Palliat Care

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Introduction:Collusion is frequently encountered but least studied entity in palliative care services in India. Impact of collusion is manifold and identifying it requires good communication skills. Once identified, it gives an indication for existing healthy versus developing unhealthy collusion to be dealt within families.Objective:The objective of this study was to identify the prevalence of collusion and its clinical and psychological correlates among patients and caregivers in a palliative cancer care.Materials and Methods:We describe systematic identification and unraveling of collusion across multiple levels in a palliative cancer care eventually drafting an algorithm to unravel the collusion. Patients and families were recruited from in-patient palliative care services after obtaining written informed consent. Qualitative interviews were conducted using collusion questionnaire, EQ5D, Visual Analog Scale, and NIMHANS psychiatric morbidity screen.Results:Among 62 cancer families interviewed, we identified that 71% collusion exists between doctor and patient, 61.3% between doctor and caregiver, and 75.83% between patient and caregiver. Around 50% collusions were unraveled systematically. Collusion was more prevalent in patients with rapid progression of illness (<6 months), patients with poor coping skills, and preference of being interviewed alone.Conclusion:This statistics suggests that collusion goes unnoticed in terminal illnesses and communication skills play a major role in identifying and dealing with collusion. This also unearths need to formulate interview techniques and structured assessment tools or questionnaire in palliative cancer care which are sparse.

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The patient who ‘must not be told’: demographic factors associated with collusion in a retrospective study in South India

Abstract: Collusion regarding diagnosis or prognosis is common among cancer patients referred for palliative care. It was more prevalent among female patients, manual workers, patients who had not received oncological treatment, and patients not accompanied by a spouse.

Cited by 7 publications

References 17 publications

Health literacy in communication, decision‐making and outcomes among cancer patients, their families and clinicians in India: A multicentre cross‐sectional qualitative study

Health literacy in communication, decision‐making and outcomes among cancer patients, their families and clinicians in India: A multicentre cross‐sectional qualitative study

Prevalence of collusion in cancer communications: A meta‐analysis

A qualitative study to assess collusion and psychological distress in cancer patients

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