Journal of palliative medicine
-
Context: Patients with serious illness and their caregivers often face challenging decisions. When faced with these decisions, patients and caregivers may display signs of ambivalence and reluctance toward end-of-life decision making. Methods: We recruited 22 palliative care clinicians to participate in a communication coaching study. ⋯ Conclusion: We found that coders can reliably identify patient and caregiver reluctance and ambivalence. Further, reluctance and ambivalence occur frequently in palliative care encounters. When patients and caregivers have ambivalence, decision making might be hampered.
-
Introduction: Moral distress is a commonly recognized phenomenon among health care providers; however, the experience of moral distress by staff caring for patients who die during an acute care hospital stay has not been previously examined. It also remains unclear how the quality of a death may impact moral distress among these providers. Objectives: We sought to understand levels of moral distress experienced by intern physicians and nurses who provided care during a patient's final 48 hours of life, and how the perceived quality of death impacted moral distress. ⋯ We identified five themes in our qualitative analysis highlighting the challenges nurses and interns face in end-of-life care, including the following: poor communication, unexpected deaths, patient suffering, resource limitations, and failure to prioritize a patient's wishes or best interests. Conclusions: Nurses and interns experience moderate-to-high levels of moral distress when caring for dying patients. Lower quality of end-of-life care is associated with higher levels of moral distress.
-
Background: Demographic factors, such as disease context and family relationships, are communication mediators and moderators; however, little is known about how understanding these factors can improve caregiver communication with providers. Recognition of communication differences among caregivers may aid the development of approaches to improve serious illness communication. Objective: To explore whether caregiver communication differs by disease context (cancer vs. dementia) and caregiver communication type (Manager, Carrier, Partner, and Lone). ⋯ Among caregiver communication types, Manager caregiver types were more confident communicating than other caregiver types and perceived greater understanding by providers than the Lone caregiver type. Manager caregivers reported significantly less stress than other caregiver communication types. Conclusions: Understanding disease context and caregiver communication type may help improve caregiver communication with health care providers.
-
Background: Most people prefer to die at home. Hospice is the standard in end-of-life care for people with Huntington disease (HD), a neurodegenerative genetic disorder that affects people in middle adulthood. Yet, we have little knowledge regarding the place of death for people with HD. ⋯ Conclusions: Our data further suggest that models that predict the place of death for serious illnesses do not appear to generalize to HD. The distribution in the places of death within HD was not uniform. Our findings may assist HD clinicians in communication during goals of care conversations.