Purpose: Family caregivers of a loved one with a life-limiting or terminal illness are often overwhelmed by, and underprepared for, their responsibilities. They often need help from family members and friends to provide comprehensive care. When death occurs, funerals and other death-related rituals bring family and communities together to honor the life and mourn the death of a loved one and provide needed support to family and caregivers. These collective rituals are often deeply rooted in culturally-bound values and can facilitate grief and help make sense about loss. Rituals act as bridge-building activities that allow people to organize and appraise emotions, information, and actions after a loss. With the emergence of the coronavirus disease-2019 (COVID-19) pandemic and the recommended restrictions to reduce infection and transmission, family members and caregivers are often faced with weighing options for honored rituals to help them grieve. Grieving during the pandemic has become disorganized. The purpose of this article is to provide case managers and other clinical staff with recommendations on guiding caregivers/families through safety precautions when a loved one dies either because of a life-limiting illness or from COVID-19 during the pandemic using guidelines from the Centers for Disease Control and Prevention (CDC). The authors also present information about complicated grief and ways to support coping with death and suggest safe alternatives to traditional death-related rituals and funerals in a COVID-19 era. Primary Practice Setting(s): Primary practice settings include home health care, hospice, hospital discharge planning, case management, and primary care. Findings/Conclusions: Precautions necessary in a COVID-19 era may add anxiety and stress to an already difficult situation of caring for loved ones at end-of-life and grieving with their loss. Utilization of CDC guidelines lessens the risk of infection while honoring loved ones' wishes and cultural traditions surrounding death and burial. Recognition of social and spiritual connections that comfort mourners must also be considered. Implications for Case Management Practice:

PICU hospitalization is particularly stressful for families. When it is prolonged and the prognostic is uncertain, it can significantly and negatively affect the whole family. To date, little is known on how families with a chronic critically ill (CCI) child are affected. This national study explored the specific PICU-related sources of stress, family functioning and needs of families of CCI patients during a PICU hospitalization. This descriptive qualitative study was conducted in the eight pediatric intensive care units in Switzerland. Thirty-one families with a child meeting the CCI criteria participated in semi-structured interviews. Interviews, including mothers only (n = 12), fathers only (n = 8), or mother and father dyads (n = 11), were conducted in German, French, or English by two trained researchers/clinical nurses specialists. Interviews were recorded, transcribed verbatim, and analyzed using deductive and inductive content analyses. Five overarching themes emerged: (1) high emotional intensity, (2) PICU-related sources of stress, (3) evolving family needs, (4) multi-faceted family functioning, and (5) implemented coping strategies. Our study highlighted the importance of caring for families with CCI children. Parents reported high negative emotional responses that affect their family functioning. Families experience was highly dependent on how HCPs were able to meet the parental needs, provide emotional support, reinforce parental empowerment, and allow high quality of care coordination.

No abstract

Patients with serious illnesses may experience existential and psychosocial distress contributing to their pain and suffering. Addressing existential distress is challenging and may require a multidisciplinary approach. Often, providers feel uncomfortable or ill equipped to care for patients suffering from this distress. In the sample case, the patient has a life-limiting disease and is concerned about his family forgetting him, experiencing loss of dignity and narrative foreclosure. Loss of dignity is sensing hopelessness and worthlessness and a loss of self-determination. Narrative foreclosure is the premature conviction that one's life story has effectively ended. Beneficial interventions include meaning-centered psychotherapy and dignity therapy (DT). Both have an underlying theme of attempting to reverse the narrative foreclosure for patients with serious illnesses and maintain a sense of meaning in life. In addition, patients can be referred to palliative care to enhance coping and decrease depressive symptoms. Dr. Harvey Chochinov has outlined a framework that clinicians can use to care for their patients in a compassionate manner to specifically combat meaninglessness. In DT, a generativity document is created for the patient and their loved ones as part of the treatment along with the opportunity to answer the dignity conserving question. Success of this route of intervention includes greater will to live, reductions in stress, and benefits perceived by family. This article aims to give a framework to treat patients with serious illnesses experiencing psychosocial and/or existential distress.

No abstract

Managing the complex care needs of seriously ill patients transitioning from hospital to home can have detrimental effects on family caregivers (FCG). Multi-component interventions tailored to FCG needs are most effective at reducing caregiver burden, distress, and depression. However, gaps exist in determining best methods to assess, document, and analyze intervention components for FCGs. Common methods used to capture patient data during transitions in care may not be appropriate or allowed for FCG needs. As such, we present a methodological approach for electronically capturing, reporting, and analyzing multiple intervention components. This approach uses a standardized terminology and pathway for tailoring intervention components in real time while evaluating intervention effects across time. We use examples from a randomized controlled trial to illustrate the benefits of the current approach for analyzing the effectiveness of multi-component interventions in the context of caregiving research.

We used a standardized terminology to describe patient problems and the nursing care provided in a pilot study of a transitional palliative care intervention with patients and caregivers. Narrative phrases of a nurse's documentation were mapped to the Omaha System (problem, intervention, and target). Over the course of the intervention, 109 notes (1473 phrases) were documented for 9 adults discharged home (mean age, 68 years; mean number of morbid conditions, 7.1; mean number of medications, 15.4). Thirty-one of the 42 Omaha System problems were identified; the average number of problems per patient was 13. Phrases were mapped to all 4 problem domains (environmental, 2.6%; health-related behaviors, 52.3%; physiological, 30.8%; and psychosocial, 14.3%). Surveillance phrases were the most frequent (72.4%); case management phrases were at 20.9%, and teaching, guidance, and counseling phrases were at 6.7%. The number of problems documented per patient correlated with the time between the first and last notes (ρ = 0.76; P = .02) but not with the number of notes per patient (ρ = 0.51; P = .16). These results are the first to describe nursing interventions in transitioning palliative care from hospital to home with a standardized terminology. Linking interventions to patient problems is critical for describing effective strategies in transitioning palliative care from hospital to home.

Seriously ill people and those they love encounter health care professionals regularly. Published studies, representing how seriously ill people prefer to be communicated with suggest they would like open, honest and thoughtful communication. Additionally, these studies emphasize that seriously ill people prefer to talk about their illness when they are ready. Medical professionals are often on the frontline of communication with these people. There is a paucity of education on communicating with seriously ill people in professional education spanning many health care professions.Our workshop will empower participants in all capacities to better communicate with seriously ill people. We will teach not how to communicate information but rather how to have a therapeutic interaction that is consistent with what we know to be true about what seriously ill people value in their communication with their health care team.We will use patient narratives both oral and video, role play and reflection to convey an easy to implement framework to therapeutic communication.Session attendees will be able to1. Understand foundational communication desires of seriously ill people and their families.2. Describe a framework to approach difficult conversations with a therapeutic intention.3. Implement practical approaches to enhance their communication with seriously ill patients and families they encounter daily.