Prolonged Grief and Bereavement Supports Within a Caregiver Population Who Transition Through a Palliative Care Program in British Columbia, Canada.

OBJECTIVE: To determine the prevalence of prolonged grief disorder (PGD), and self-reported resilience among bereaved caregivers within a palliative care program that serves a large region of the Lower Mainland in British Columbia, Canada. Additionally, to discern effective bereavement supports utilized by caregivers following the loss of a loved one. METHODS: A descriptive study using both quantitative and qualitative methods. Sociodemographic information (n = 427) was collected from bereaved caregivers 3 months after their loss. PGD and resilience were prospectively assessed 12 months post-loss using the prolonged grief scale (PG-13, n = 212) and brief resilience scale (BRS, n = 215), respectively. A qualitative thematic analysis was conducted on responses to the open-ended question on what bereavement services or activities caregivers found helpful in coping with the loss of a loved one. RESULTS: Of the 212 individuals that completed the PG-13, 4.7% met diagnostic criteria for PGD, 27.4% were moderate risk, and 67.9% were low risk for PGD. Of the 215 caregivers that completed the BRS, 48.4% had low resilience, 51.6% had normal resilience, and 0% had high resilience. The major themes of formal supports, informal supports, and self-care activities emerged from caregiver comments regarding effective bereavement supports. CONCLUSION: The incidence of PGD in caregivers is low within the Fraser Health Palliative Care program. Bereaved caregivers mainly utilize existing social networks and activities to cope with their loss. Focusing on a community-based approach to supports may improve bereavement experiences and lower rates of prolonged grief.

Using Patient- and Family-Reported Outcome and Experience Measures Across Transitions of Care for Frail Older Adults Living at Home: A Meta-Narrative Synthesis.

BACKGROUND AND OBJECTIVES: Our aim was to create a "storyline" that provides empirical explanation of stakeholders' perspectives underlying the use of patient- and family-reported outcome and experience measures to inform continuity across transitions in care for frail older adults and their family caregivers living at home. RESEARCH DESIGN AND METHODS: We conducted a meta-narrative synthesis to explore stakeholder perspectives pertaining to use of patient-reported outcome and experience measures (PROMs and PREMs) across micro (patients, family caregivers, and healthcare providers), meso (organizational managers/executives/programs), and macro (decision-/policy-makers) levels in healthcare. Systematic searches identified 9,942 citations of which 40 were included based on full-text screening. RESULTS: PROMs and PREMS (54 PROMs; 4 PREMs; 1 with PROM and PREM elements; 6 unspecified PROMs) were rarely used to inform continuity across transitions of care and were typically used independently, rarely together (n = 3). Two overarching traditions motivated stakeholders' use. The first significant motivation by diverse stakeholders to use PROMs and PREMs was the desire to restore/support independence and care at home, predominantly at a micro-level. The second motivation to using PROMs and PREMs was to evaluate health services, including cost-effectiveness of programs and hospital discharge (planning); this focus was rarely at a macro-level and more often split between micro- and meso-levels of healthcare. DISCUSSION AND IMPLICATIONS: The motivations underlying stakeholders' use of these tools were distinct, yet synergistic between the goals of person/family-centered care and healthcare system-level goals aimed at efficient use of health services. There is a missed opportunity here for PROMs and PREMs to be used together to inform continuity across transitions of care.

Design and introduction of a quality of life assessment and practice support system: perspectives from palliative care settings.

BACKGROUND: Quality of life (QOL) assessment instruments, including patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs), are increasingly promoted as a means of enabling clinicians to enhance person-centered care. However, integration of these instruments into palliative care clinical practice has been inconsistent. This study focused on the design of an electronic Quality of Life and Practice Support System (QPSS) prototype and its initial use in palliative inpatient and home care settings. Our objectives were to ascertain desired features of a QPSS prototype and the experiences of clinicians, patients, and family caregivers in regard to the initial introduction of a QPSS in palliative care, interpreting them in context. METHODS: We applied an integrated knowledge translation approach in two stages by engaging a total of 71 clinicians, 18 patients, and 17 family caregivers in palliative inpatient and home care settings. Data for Stage I were collected via 12 focus groups with clinicians to ascertain desirable features of a QPSS. Stage II involved 5 focus groups and 24 interviews with clinicians and 35 interviews with patients or family caregivers during initial implementation of a QPSS. The focus groups and interviews were recorded, transcribed, and analyzed using the qualitative methodology of interpretive description. RESULTS: Desirable features focused on hardware (lightweight, durable, and easy to disinfect), software (simple, user-friendly interface, multi-linguistic, integration with e-health systems), and choice of assessment instruments that would facilitate a holistic assessment. Although patient and family caregiver participants were predominantly enthusiastic, clinicians expressed a mixture of enthusiasm, receptivity, and concern regarding the use of a QPSS. The analyses revealed important contextual considerations, including: (a) logistical, technical, and aesthetic considerations regarding the QPSS as a technology, (b) diversity in knowledge, skills, and attitudes of clinicians, patients, and family caregivers regarding the integration of electronic QOL assessments in care, and (c) the need to understand organizational context and priorities in using QOL assessment data. CONCLUSION: The process of designing and integrating a QPSS in palliative care for patients with life-limiting conditions and their family caregivers is complex and requires extensive consultation with clinicians, administrators, patients, and family caregivers to inform successful implementation.

A Knowledge Translation Project on Best Practices in End-of-life Care.

This is a knowledge translation project to promote the uptake of best practices in end-of-life (EOL) care within the primary care setting in British Columbia (BC) through the use of tools embedded into electronic medical records (EMRs). The knowledge-to-action model is used to engage primary care providers in co-designing, adopting and evaluating the EOL care toolkit built for 3 EMRs. The toolkit has a set of EMR-specific data entry templates, query/report functions and access to additional downloadable resources. It is based on the EOL learning module designed and offered by the BC General Practice Services Committee's Practice Support Program to improve EOL care by primary care providers in the province. Our web-based distribution method allows providers to download and install the toolkit then take part to evaluate its use and impact. Initial feedback from phases 1-3 (of 4) has been favorable and has led to iterative improvements.

A case report of dexmedetomidine used to treat intractable pain and delirium in a tertiary palliative care unit.

BACKGROUND: This case report describes an end-stage cancer patient with intractable neuropathic pain and delirium who was successfully managed during the last 3 weeks of her life with a continuous subcutaneous infusion of dexmedetomidine. CASE PRESENTATION: A 55-year-old woman with locally advanced cervical cancer and uncontrolled pelvic pain was admitted to a tertiary palliative care unit for pain management. As her disease progressed, the patient's pelvic pain intensified despite treatment with methadone, gabapentin, ketamine, and hydromorphone administered by continuous subcutaneous infusion plus frequent breakthrough doses of hydromorphone and sufentanil. CASE MANAGEMENT: A continuous subcutaneous infusion of dexmedetomidine was started and titrated to achieve pain relief. CASE OUTCOME: The patient's pain and delirium cleared. The treatment was successful in fulfilling the patient's goal of care: not to be deeply and continuously sedated, but to be rousable and of clear mind while still having good pain control. CONCLUSION: Dexmedetomidine is a potentially useful medication for the targeted treatment of intractable pain and delirium in the tertiary palliative care environment. Future research is required to compare dexmedetomidine infusion to standard treatment with midazolam infusion for treatment of intractable symptoms in the palliative care environment.