Journal of palliative medicine
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Objective: To assess the face and content validity, acceptability and feasibility of a French version of the Children's Palliative Outcome Scale (CPOS). Background: Instruments in French used to measure outcomes in pediatric palliative care are lacking. Methods: After forward-backward translation of the 12-item English CPOS to French, we conducted a qualitative pilot study. During semi structured interviews among children and parents, we used the CPOS, the Schedule for the Evaluation of Individual Quality of Life interview guide (SEIQoL) and the Quality of Life in Life-threatening Illness-Family Carer questionnaire (QOLLTI-F), in addition to three expert meetings with PLTs. Results: Fourteen children and adolescents (8-18 years) with life-limiting or life-threatening conditions cared for at home, in hospital or in respite care services, 19 parents, and 9 members of 4 pediatric liaison teams (PLTs) providing palliative care in a Belgian francophone region were included in the study. No families refused to participate. ⋯ The children valued being given the opportunity to share their experiences. New QOL dimensions pertaining to social, emotional, and administrative health-care related issues were added to the original version of the 12-item CPOS, leading to a 22-item CPOS-2. Discussion: The CPOS-2 was perceived as relevant and easy to use by the principal stakeholders. Our study paves the way for a large-scale field study assessing its psychometric characteristics and its implementation in routine clinical care.
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Background: Chaplain-led communication-board-guided spiritual care may reduce anxiety and stress during an intensive care unit (ICU) admission for nonvocal mechanically ventilated patients, but clinical pastoral education does not teach the assistive communication skills needed to provide communication-board-guided spiritual care. Objective: To evaluate a four-hour chaplain-led seminar to educate chaplains about ICU patients' psychoemotional distress, and train them in assistive communication skills for providing chaplain-led communication-board-guided spiritual care. Design: A survey immediately before and after the seminar, and one-year follow-up about use of communication-board-guided spiritual care. ⋯ Self-reported skill and comfort in providing communication-board-guided spiritual care increased from a median (interquartile range) score of 4 (2-6) to 7 (5-8) and 6 (4-8) to 8 (6-9), respectively (both p < 0.001). One year later, 31% of chaplains reported providing communication-board-guided spiritual care in the ICU. Conclusions: A single chaplain-led seminar taught chaplains about ICU patients' psychoemotional distress, trained chaplains in assistive communication skills with nonvocal patients, and led to the use of communication-board-guided spiritual care in the ICU for up to one year later.
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Background: Research on what children wished they had done differently after their sibling's death has not been reported. Objective: Examine what children wished they had/had not done, and their coping after a sibling's neonatal/pediatric intensive care unit/emergency department (NICU/PICU/ED) death. Design: Qualitative data are part of a longitudinal mixed methods study of 6- to 18-year-olds interviewed at 2, 4, 6, and 13 months after a sibling's death. Setting/Subjects: Ninety-five school-aged children and 37 adolescents (58% female; 30% Hispanic, 50% black, 20% white). Measurements: Children responded to three open-ended questions: Thinking about your sibling's death, are there things you wish you (1) had done? (2) had not done? (3) What do you do to deal with your sibling's death? Conventional content analysis procedures were used. Results: Children wished they had spent more time, talked and played more with their sibling, saved their sibling, taken care of their sibling more, and been able to see their sibling grow up. They wished they had not been mean/yelled at their sibling, complained/argued with mother about their sibling, and kept their feelings inside. ⋯ Resuming their usual activities, trying to be happy, and laughing also helped children cope. Conclusions: Children commented more about what they wish they had done (n = 317) and less about what they wish they had not done (n = 107). Children talked to others and tried resuming usual activities to cope.
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Case Reports
Systems Barriers to Assessment and Treatment of COVID-19 Positive Patients at the End of Life.
The Novel Coronavirus SARS-CoV-2 (COVID-19) pandemic is changing how we deliver expert palliative care. We can expect many to die prematurely secondary to COVID-19 across the United States. We present a case of how several hospital systems-based interventions, intended to slow viral spread and to protect health care workers, have inadvertently created barriers to routine palliative interventions in this patient population. ⋯ These barriers have altered many aspects of our established workflow and algorithms for care, including changes in communication, goals of care discussions, how providers and nurses are monitoring for symptoms, and end-of-life monitoring. These challenges required real-time solutions such as technology utilization, proposing a change in medical delivery systems, and reducing redundancy to preserve personal protective equipment. To continue to deliver quality care for this patient population, palliative medicine must adapt quickly.
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Background: The benefits of hospice for patients with advanced cancer are well established. Short hospice length of service (LOS) is a marker of poor quality care and patient and family dissatisfaction. Interventions based on behavioral science might reduce suboptimal hospice use. ⋯ Conclusions: The methods are not sufficient to conclude that the intervention does not improve hospice use. A substantial number of patients with cancer who used hospice had LOS ≤7 days, a marker of poor quality. Using peer comparison in combination with additional behavioral interventions should be considered to improve end-of-life care.