Discordance among patient preferences, caregiver preferences, and caregiver predictions of patient preferences regarding disclosure of terminal status and end‐of‐life choices

Abstract

Family caregivers do not generally concur with patients in their preferences, nor do they reliably predict PP. Open dialogue between patient and family caregivers would reduce the discrepancy. More emphasis on incorporating family caregivers in EOL communication is needed from clinical, research, and training perspectives.

Preferences regarding disclosure of prognosis and end-of-life care: A survey of cancer patients with advanced disease in a lower-middle-income country

“…[56][57][58][59] In light of the more subtle picture that patients' responses in this study suggest, we believe that a great deal more work is needed to better characterize the optimum manner in which communications between providers, patients and families should occur and what factors-individual-, group-, and contextlevel-influence these communications. 60,61 Our findings also indicate that a patient's desire to have information withheld or to have it shared with a family member instead of the patient could be related to issues of patient empowerment and how involved they feel in the care decision making. With such patients, healthcare providers may need to be more sensitive, to engage more in patient-centered communication, 62,63 and to find ways to make the patient feel empowered and engaged.…”

Poor‐prognosis disclosure preference in cancer patient–caregiver dyads and its association with their quality of life and perceived stress: a cross‐sectional survey in mainland China

“…However, more matched caregivers in the III–IV stage subgroup than in the I–II stage group preferred to withhold poor prognosis (70.1% vs. 58.5%); such a change in caregivers' preference might have originated from Chinese Confucianism and the widespread beneficence principle . Physicians should therefore note that there is a discrepancy between cancer patients' and their caregivers' disclosure preferences . Moreover, the caregivers whose relative patients were in III–IV stage should be provided with adequate ongoing guidance about practical facets of care skills and effective ways to communicate with patients .…”

Prognostic awareness and communication preferences among caregivers of patients with malignant glioma

“…PA is necessary for ICs to effectively advocate for their loved one's interests in treatment decision making, a central responsibility of ICs' role as designated health care proxies and critical to achieving patient‐centered care. Yet, a growing body of literature highlights ICs' lack of sufficient—and desire for more—prognostic information, as well as a discrepancy in PA between patients and ICs . It is well documented that disagreements are common between patients and ICs about end‐of‐life (EOL) treatment preferences, with ICs more likely to prefer aggressive EOL care .…”