Information disclosure to terminally ill patients and their relatives: self-reported practice of Belgian clinical specialists and general practitioners

Michiels, Eva; Deschepper, Reginald; Bilsen, Johan; Mortier, Freddy; Deliens, Luc

doi:10.1177/0269216308102043

Cited by 15 publications

(29 citation statements)

References 44 publications

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“…In many cases, life expectancy is only discussed if the patient asks, and in some cases not even if requested. 14,15 In a large American survey, while physicians felt able to formulate a prognosis for 96% of their advanced cancer patients, they stated they would only communicate this prognosis to 37%, even if a survival estimate were requested. They would not communicate any survival estimate to 22% of patients and would communicate a different estimate to the one they had formulated to 40%, of which 70% would be optimistically disparate.…”

Section: Physician Factorsmentioning

confidence: 99%

Deciding what information is necessary: do patients with advanced cancer want to know all the details?

Ward¹,

Russell²

2011

CMAR

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Abstract:Communicating effectively with patients who have advanced cancer is one of the greatest challenges facing physicians today. Whilst guiding the patient through complex diagnostic and staging techniques, treatment regimens and trials, the physician must translate often imprecise or conflicting data into meaningful personalized information that empowers the patient to make decisions about their life and body. This requires understanding, compassion, patience, and skill. This narrative literature review explores current communication practices, information preferences of oncology patients and their families, and communication strategies that may assist in these delicate interactions. Overwhelmingly, the literature suggests that whilst the majority of patients with advanced cancer do want to know their diagnosis and receive detailed prognostic information, this varies not only between individuals but also for a given individual over time. Barriers to the delivery and understanding of information exist on both sides of the physician-patient relationship, and family dynamics are also influential. Despite identifiable trends, the information preferences of a particular patient cannot be reliably predicted by demographic, cultural, or cancer-specific factors. Therefore, our primary recommendation is that the physician regularly asks the patient what information they would like to know, who else should be given the information and be involved in decision making, and how that information should be presented.

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Section: Physician Factorsmentioning

confidence: 99%

Deciding what information is necessary: do patients with advanced cancer want to know all the details?

Ward¹,

Russell²

2011

CMAR

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“…Asking about how one would act in an instance is especially vulnerable to receiving socially desirable responses. Also, previous studies had been limited to physician intentions 6,23,24 and diagnoses. 2,6,9,25 This is the first nationwide study that asks GPs about the end-of-life issues they had discussed with actual patients.…”

Section: Introductionmentioning

confidence: 99%

Discussing End-of-Life Issues in the Last Months of Life: A Nationwide Study among General Practitioners

Abarshi

Echteld

Donker

et al. 2011

Journal of Palliative Medicine

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Background: Communication is a necessary tool for ensuring the provision of quality patient-centered care for patients who have life-threatening illnesses, and discussing all relevant end-of-life issues should not be limited to cancer patients. Objective: To examine the incidence and timing of general practitioners (GPs) discussing end-of-life issues with patients whose deaths were expected, and to identify the factors associated with them discussing these issues. Methods: Between January and December 2008, GPs participating in a nationally representative sentinel surveillance network of GPs were asked to register, using standardised forms, the extent of discussing 10 end-of-life issues with patients. Results: We examined 252 patients who died nonsuddenly, 38% of whom died of cancer, and 86% of whose treatment goal was palliative care. Our findings show that GPs often waited until very close to death before they discussed end-of-life issues with patients, and discussed spiritual and social issues less than physical symptoms, diagnoses, and psychological problems. In 74% of cases, the GPs were informed of their patients' preferred place of death; and 8 out of 10 patients with known preferences for place of death, died there. Being diagnosed with cancer was associated with a higher frequency of discussing all 10 end-of-life issues than diagnosis with other (noncancer) conditions, but this is a state of mind we did not explore in this study. Conclusion: Promotion of timely discussion of all relevant end-of-life issues, in patients with cancer and noncancer diagnoses, is advisable based on systematic needs assessment.

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“…micHieLs et al (2009) [10] points out the value of involving patients' relatives in the information process, but also respecting the patient autonomy obtaining their consent before disclosing information to their relatives. Any intervention must be congruent with the patients' values and preferences -according to the principles of autonomy, substituted judgment and bests interests, integrated in end of life decisions in intensive/special care units and examining the impact of those efforts in the patient and family [11].…”

Section: Scopusmentioning

confidence: 99%

“…micHieLs and coLLeAgues (2009) [10] research shows that clinical specialists and general practitioners discuss most end-of-life topics with the patient, but omit important issues such as end-of-life hastening options and life expectancy. The lack of information may influence patients' treatment preferences, favoring life-extending therapy over comfort care, increasing anxiety, depression or dissatisfaction.…”

Section: Scopusmentioning

confidence: 99%

Family Relations And Spiritual Response To Palliative Care: A Review Of Literature

Filho¹,

Almeida²,

Siebra³

et al. 2016

Int Arch Med

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Introduction: It is common to prioritize the critical patient care in detrainment of the caregivers, but this usual behavior must change, maintaining the family members as an extension of the care given to patients. Results and Discussion:Spiritual wellbeing is a complement to all health strands united with physical and psychosocial status, they must be put into the routine of practicing medicine on end of life care in congruence with a good communication. Conclusion:At all levels of assistance in palliative care the family must be included, therefore clinicians shall have information on how to deal with them and developing activities to improve communication.

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Information disclosure to terminally ill patients and their relatives: self-reported practice of Belgian clinical specialists and general practitioners

Cited by 15 publications

References 44 publications

Deciding what information is necessary: do patients with advanced cancer want to know all the details?

Deciding what information is necessary: do patients with advanced cancer want to know all the details?

Discussing End-of-Life Issues in the Last Months of Life: A Nationwide Study among General Practitioners

Family Relations And Spiritual Response To Palliative Care: A Review Of Literature

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