The COVID-19 pandemic and palliative care units: A cross-sectional survey of the informational needs of caregivers

The COVID-19 pandemic is anticipated to continue spreading widely across the globe throughout 2020. To mitigate the devastating impact of COVID-19, social distancing and visitor restrictions in healthcare facilities have been widely implemented. Such policies and practices, along with the direct impact of the spread of COVID-19, complicate issues of grief that are relevant to medical providers. We describe the relationship of the COVID-19 pandemic to anticipatory grief, disenfranchised grief, and complicated grief for individuals, families, and their providers. Further, we provide discussion regarding countering this grief through communication, advance care planning, and self-care practices. We provide resources for healthcare providers, in addition to calling on palliative care providers to consider their own role as a resource to other specialties during this public health emergency.

The present study examined the information needs of family caregivers of terminally ill cancer patients. Data were obtained by a structured interview from 66 Japanese caregivers of cancer patients institutionalized in a palliative care unit. Needs for disease-related information (the disease, treatment and prognosis) and care-related information (the care for the patient and family members) were investigated, and demographic and situational characteristics related to individual information needs were assessed. More than 60% of family caregivers wanted disease-related information, and approximately half of these wanted patient and family care-related information. These information needs had significant correlations with the family caregiver's age and with such patient-dependent situational variables as time since diagnosis, care site before enrolling in a palliative care unit, and presence or absence of other family caregivers. The results may help health care professionals to better inform terminally ill cancer patients and their family caregivers.

The significance of connectedness for well-being is well known. At the end of life however, illness and body decline may challenge a person's ability of staying and feeling connected. The aim of this phenomenological study was to interpret meanings of connectedness, through narrative interviews with persons admitted to inpatient palliative care in Sweden. Results involving connectedness through the body, connectedness to, and uncanniness toward other patients, and connectedness to significant others and society are discussed. The study underscores the importance of connectedness until death. However, in inpatient palliative care this is complex. Patients can co-create or challenge each other's sense of connectedness through the symbolism of illness and diseased bodies. Moreover, the capability of connectedness is influenced by illness, spatiality, atmosphere, activities, and resources in the care place.