Journal of palliative medicine
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Multicenter Study Observational Study
Analyzing Differences in Perception between Oncologists and Patients to Adapt Pharmacological Treatment for Breakthrough Cancer Pain: Observational ADAPTATE Study.
Background: Transmucosal fentanyl (TF), used for breakthrough cancer pain (BTcP) treatment, has different formulations with distinctive attributes. The hypothesis is that, in shared decision making for the prevention of certain therapeutic problems, doctors and patients assign different value to the characteristics of treatment options. Aim: The aim of this study was to assess the discordance between the oncologists' opinion of attributes of TF and patients' expectations in BTcP treatment. ⋯ Conclusion: Our results confirm that some aspects that most concern patients about the treatment of BTcP differ from those to which oncologists attach most importance. Increased patient awareness and education about BTcP and its treatment could lead to greater satisfaction and better patient involvement in therapeutic decisions. Certain barriers need to be overcome, such as lack of time in consultations and poor communication skills of oncologists that hinder patient health education.
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Background: Telenovelas show significant promise as a mode of education that could potentially enhance hospice family caregivers' (HFCG) ability to manage distress or pain for themselves and the care recipient. Objectives: We sought to understand HFCGs' perceived benefits and challenges of NOVELA using the Levels of Kirkpatrick as a conceptual framework. Setting/Subjects: HFCGs from two hospices in the Mid-Atlantic region of the United States. ⋯ Three unique themes were identified: acceptability of NOVELA, usability and relevance of NOVELA, and the effect of NOVELA. According to our conceptual model, the intervention positively affects all three adult learning categories: reaction, learning, and behavior. Conclusion: Our findings suggest that HFCGs support the proposed NOVELA intervention and it appears to be an acceptable educational tool during hospice care (NCT04533594).
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Background: Surrogate decision makers are required to make difficult end-of-life decisions with little preparation. Little is known about what surrogates may need to adequately prepare for their role, and few resources exist to prepare them. Objective: To explore experiences and advice from surrogates about how best to prepare for the surrogate role. ⋯ Five themes and advice were identified: (1) lack of, but needing, surrogates' own preparation and guidance (2) initiate ACP conversations, (3) learn patient's values and preferences, (4) communicate with clinicians and advocate for patients, and (5) make informed surrogate decisions. Conclusion: Experienced surrogate decision makers emphasized the importance of ACP and advised that surrogates need their own preparation to initiate ACP conversations, learn patients' values, advocate for patients, and make informed surrogate decisions. Future interventions should address these preparation topics to ease surrogate burden and decrease disparities in surrogate decision making.
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Background: Home health agencies (HHAs) are often affiliated with hospice agencies and commonly care for patients with serious illness within the Medicare program. HHAs may therefore provide a potential opportunity to facilitate timely referral to hospice when appropriate. Objectives: To determine if patients cared for by HHAs affiliated with hospice agencies experience differential hospice use and care patterns. ⋯ There were no differences in hospice length of stay or live discharge rate by hospice affiliation. Conclusion: Medicare beneficiaries cared for by HHAs affiliated with hospices are more likely to enroll in hospice at the end of life. This has implications for improving hospice access through home health incentives and models of care.
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Background: Pediatric palliative care (PPC) consultation is infrequent among children on extracorporeal membrane oxygenation (ECMO). Objective: Investigate intensive care unit (ICU) team members' perceptions of automatic PPC consultation for children on ECMO in an ICU in the United States. Methods: Cross-sectional survey assessing benefits, barriers to PPC, and consultation processes. ⋯ Open-ended responses showed more positive (79% vs. 13%) than negative statements. Positive statements reflected on expanding PPC to other critically-ill children where negative statements revealed unrecognized value in PPC. Conclusions: Results demonstrate opportunities for education about the scope of PPC and improvements in PPC delivery.