Experiences and Attitudes of Patients With Terminal Cancer and Their Family Caregivers Toward the Disclosure of Terminal Illness

Abstract

PURPOSE We investigated the experiences of cancer patients and their family caregivers who became aware that the cancer was terminal, how they became aware, and how they felt about disclosure of the information. PATIENTS AND METHODS In this cohort study, we administered questionnaires to 619 consecutive patients determined by physicians to be terminally ill and to their family caregivers. RESULTS A total of 481 patients and 381 family caregivers completed the questionnaire. A majority of patients (58.0%) and caregivers (83.4%) were aware of the patient's terminal status. Approximately 28% of patients and 23% of caregivers reported that they guessed it from the patient's worsening condition. The patient group was more likely than the caregiver group (78.6% v 69.6%) to prefer that patients be informed of their terminal status. Patients informed of their terminal diagnosis had a significantly better quality of life and fewer symptoms and had a lower rate of emotional distress than patients who guessed it from their worsening condition. Younger patients and patients who paid the treatment costs themselves were significantly more likely to want to be told when their illness was terminal. If the patient paid the treatment cost and was employed at the time of the cancer diagnosis, the family caregivers were more likely to prefer disclosure of terminal illness. CONCLUSION Most patients with terminal cancer and their family caregivers preferred disclosure, and patients who knew of their terminal diagnosis had a lower rate of emotional distress and a higher health-related quality of life.

“Knowing is Better”: Preferences of Diverse Older Adults for Discussing Prognosis

“…22 Literature from outside the US shows that elders in traditional Chinese families may prefer nondisclosure of poor prognosis, 23,24 though more recent findings from China and Korea suggest that patient attitudes in Asian cultures may be changing in favor of direct, patient-centered disclosure. 25,26 A limited number of studies from the advance planning literature also point to Latinos' unique perspectives on patient-doctor discussions around the end of life. 27,28 Additional studies have addressed how best to discuss prognosis given patients' preferences and perceived needs, 17,29,30 but we could find no deep, qualitative investigations of the reasons behind patient preferences for prognosis in a diverse elderly population.…”

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

“…69 Evidence suggests that female patients, 47,66 those with better education, 70 and those in the first six decades of life may desire more information than their counterparts. 36,47 Certain types of cancer may also correlate with higher informational needs; for example, ovarian as compared to breast. 70 Higher depression scores are associated with wanting to know the shortest time to live without treatment.…”

“…1,33 Tailored prognostic information has been found to result in higher satisfaction with care, lower anxiety and depression scores, and even improved cognitive function. [34][35][36] Potentially distressing information delivered sensitively can be used to reassure by allowing planning around symptom progression and actual mode of death, such as preparing specific crisis orders for catastrophic hemorrhage. 37,38 Cultural elements also influence physician communication.…”

Iranian Cancer Patient Perceptions of Prognosis and the Relationship to Hope

“…While some research suggests that there are few associated negative effects (Barnett, 2006;Last & van, Veldhuizen, 1996;Leung et al, 2006;Yun et al, 2010), there is some evidence that this information negatively effects survival (Yun et al 2011;Kim et al, 2013), physical (Papadopoulos et al, 2011) and mental health (Chochinov et al, 2000; Alehe Seyedrasooli et al Mack et al, 2006;Burridge et al, 2009;Chan, 2011;Papadopoulos et al, 2011) and quality of life (Tang et al, 2008) of cancer patients. The disclosure of cancerrelated information very likely has a significant impact on a patient's degree of hope.…”