Terminal Delirium in Hospice: The Experiences and Perspectives of Caregivers Providing Care to Terminally Ill Patients in Home Settings.

OBJECTIVES: Little is known about the experiences of caregivers who provide care to persons with terminal delirium (TD) in home settings. This scarcity of information is suggestive that further research is needed about care for hospice patients with delirium in the home and community. AIM: To elicit views, feelings, and end-of-life care experiences of primary caregivers assisting dying persons with TD in hospice at home. DESIGN: Qualitative, exploratory, cross-sectional study design was chosen. In-depth semistructured interviews explored caregiver experiences in caring for persons with TD. Qualitative thematic framework analysis was used. PARTICIPANTS: Fifteen bereaved adult primary caregivers who received services from a hospice care program affiliated with a large nonprofit health system in the US Midwest. RESULTS: Caregiver experiences were broad and reflected 4 major themes: symptomology, coping, effective and noneffective interventions, and support. The most distressing factors for caregivers were behaviors and symptomology of TD. They did not know what to say, how to respond, and how best to behave with someone who had delirium. Many caregivers had the impression that medication does not lessen delirium symptoms and that nonpharmacologic interventions are effective and beneficial only when they were important and meaningful to patients before delirium onset. CONCLUSIONS: This study added new knowledge from direct and personal perspectives of caregivers providing end-of-life care to patients at home. Understanding developed about provision of care to someone with TD in home hospice. Improved comprehension of caregiver experiences can help professional hospice and palliative care staff better prepare caregivers for when patients have TD.

Deactivating a Pacemaker in Home Care Hospice: Experiences of the Family Caregivers of a Terminally Ill Patient.

OBJECTIVES: Although the experiences of family members who care for relatives at the end of life have been researched extensively, little is known about the needs and experiences of families caring for hospice patients with pacemakers. AIM: To better understand the experiences of family caregivers of a terminally ill patient who received hospice care at home and chose deactivation of a pacemaker. DESIGN: The exploratory, cross-sectional design involved semistructured, in-depth interviews. A narrative analysis focusing on form and content was chosen to analyze the data. PARTICIPANTS: Five bereaved caregivers from the Midwestern United States who provided care and participated in the deactivation of their family member's pacemaker. RESULTS: Four storylines that described, gave meaning to, and contextualized the caregivers' experiences were identified: "I am done. I am not doing it anymore"; "Whatever you decide, I'll support you"; "It is really difficult to watch, but you want to be there"; and "I will not have part of this." Caregivers struggled with lack of support, understanding, and acceptance from medical providers when their family member decided to have her pacemaker deactivated, and they believed that the hospice model of care was appropriate to support and help them in that process. CONCLUSIONS: This research aids in understanding the ramifications of family-provided end-of-life care to a patient whose pacemaker has been deactivated. This can help to increase hospice clinicians' knowledge regarding caregivers' experiences facing deactivation of a pacemaker, before and after the patient's death.

Spiritual Care at the End of Life: Does Educational Intervention Focused on a Broad Definition of Spirituality Increase Utilization of Chaplain Spiritual Support in Hospice?

Background: Research shows that religion and spirituality are important when persons cope with serious and life-threatening illness. Patients who receive good spiritual care report greater quality of life and better coping, and such support is strongly associated with greater well-being, hope, optimism, and reduction of despair at end of life. Despite these benefits, evidence shows that many patients and caregivers (P/C) refuse spiritual care when a hospice team offers it, possibly resulting in unnecessary suffering. Objective: To better understand what contributes to spiritual support acceptance in hospice care. Design: Quasi-experimental quantitative study. Setting/Subjects: 200 patients admitted to hospice. Measurements: Participants were divided equally into intervention and control arms. Control participants received standard information about the availability of chaplain support and an offer for referral to chaplain services. Intervention participants received educational intervention that explained hospice chaplain services and the evidence-based benefits of spiritual support. The association of chaplain acceptance was measured with treatment group, patient age, disease, church affiliation and support, sex, bereavement risk, and place of residence. Results: Among intervention participants, 64 (64%) accepted spiritual support versus 52 (52%) of control participants. The intervention arm's acceptance rate was higher than the control arm after adjustment for other variables. The variables associated with acceptance were age, primary diagnosis, and place of residence. Conclusions: This research suggests that educational intervention that explains spiritual care in hospice and its benefits contributes importantly to greater acceptance and allows P/C to gain the benefits of spiritual support during end-of-life care.

Framing change for high-value healthcare systems.

Healthcare providers are challenged by forces that are driving change at an accelerated rate. Unfortunately, organizational structures, system inertia, and the lack of shared values in many organizations thwart change. Systems that do not understand the principles of change management for complex adaptive systems (CAS) continue to apply change models that have little chance of success. An understanding of the principles and actions that enable change in CAS and the use of a formal process to frame and focus change are essential for long-term success.