Context. Pain is a common and distressing symptom. Pain management is a core competency for palliative care (PC) teams. Objective. Identify characteristics associated with pain and pain improvement among inpatients referred to PC. Methods. Thirty-eight inpatient PC teams in the Palliative Care Quality Network entered data about patients seen between December 12, 2012 and March 15, 2016. We examined patient and care characteristics associated with pain and pain improvement. Results. Of patients who could self-report symptoms, 30.7% (4959 of 16,158) reported moderate-to-severe pain at first assessment. Over 40% of these patients had not been referred to PC for pain. Younger patients (P < 0.0001), women (P < 0.0001), patients with cancer (P < 0.0001), and patients in medical/surgical units (P < 0.0001) were more likely to report pain. Patients with pain had higher rates of anxiety (P < 0.0001), nausea (P < 0.0001), and dyspnea (P < 0.0001). Sixty-eight percent of patients with moderate-to-severe pain improved by the PC team's second assessment within 72 hours; 74.7% improved by final assessment. There was a significant variation in the rate of pain improvement between PC teams (P < 0.0001). Improvement in pain was associated with improvement in anxiety (OR ¼ 2.9, P < 0.0001) and dyspnea (OR ¼ 1.4, P ¼ 0.03). Patients who reported an improvement in pain had shorter hospital length-of-stay by two days (P ¼ 0.003). Conclusion. Pain is common among inpatients referred to PC. Three-quarters of patients with pain improve and improvement in pain is associated with other symptom improvement. Standardized, multisite data collection can identify PC patients likely to have marked and refractory pain, create benchmarks for the field, and identify best practices to inform quality improvement.
Background: The COVID-19 pandemic has spurred unprecedented need for specialty palliative care. The Palliative Care Quality Collaborative (PCQC) provides unique infrastructure for rapid data collection and analysis. Objectives: To capture and describe real-time, real-world experiences of specialty palliative care professionals caring for patients with COVID-19 through a rapid reporting tool and registry. Setting: Palliative care clinicians consulted for patients either positive for COVID-19, under investigation for COVID-19, or recovered from COVID-19. Design: The PCQC created a 13-item COVID-19 case report form (CRF), modeled after the PCQC core dataset for specialty palliative care quality measurement. Twelve items offered discrete answer choices and one was open-ended. The CRF was publicized widely (e.g., social media, e-mail list serves) and completed through a link on the PCQC website. Results: Three hundred six reports (298 adult, 8 pediatric) were submitted between April 6, 2020 and October 7, 2020. The majority of patients (83%) were 50 years or older; 25% were 80 or older, and 78% were COVID-19 positive. Male gender identity was significantly more prevalent than female (58% vs. 40%, p < 0.002). The most common comorbidity was cardiovascular disease (23%). Of adult hospital-based patients, 69% were full code before palliative care consultation versus 28% after ( p < 0.05). All pediatric patients were full code before and after palliative care consult. Qualitative themes were strained communication with patients, family visitation challenges, communication barriers between clinicians and families, rapid changes in palliative care medical management, community care options difficult to find, lack of testing in community-based settings, and guardianship and legal challenges. Conclusion: Preliminary data from the first 306 patients reported to the PCQC COVID-19 Registry describe palliative care use concentrated among older and higher risk patients and challenges to the provision of palliative care during this pandemic.
played a crucial role when seriously ill, predominately lower income African American patients and their families considered EOL decisions. We identified three categories of EOL decision-making among participants that reflect varied levels of chaplain involvement: 1) chaplain-supported decision-making; 2) chaplaincentered decision-making; and 3) religion-centered decision-making. We report these findings in the form of three illustrative case studies.Conclusions. Chaplains' primary role in EOL decision-making was to relieve spiritual distress, ease guilt, and provide comfort. One participant described this support as ''something that only the chaplain could offer.'' Implications for Research, Policy, or Practice. Delineating core categories of patient and family concerns regarding spiritual health at EOL will help chaplains to respond to persons with interventions that correspond with the assessed level of the chaplain's role.
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