Journal of palliative medicine
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Aim: The aim of this study is to present the experiences of cancer patients who participate in a social model palliative day care program (PDCP). This is the first research study that evaluates early integration of PDCP, from the patients' perspective, in Central and Eastern Europe. Methods: A descriptive qualitative study using five focus groups was conducted with patients cared by Hospice Casa Sperantei Foundation (HCS) in Brasov, Romania. ⋯ The themes that emerged from this study are consistent with previous international studies referring to benefits of early integration of PC throughout PDCP. Future research is needed to examine further the benefits of early integration of PDCP services for patients living with serious illnesses. Clinical Trials Registration Number 1/03.02.2020.
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Background: Hospice and palliative care (PC) are important components of lung cancer care and independently provide benefits to patients and their families. Objective: To better understand the relationship between hospice and PC and factors that influence this relationship. Methods: A retrospective cohort study of patients diagnosed with advanced lung cancer (stage IIIB/IV) within the U. ⋯ Conclusions: Among patients with advanced lung cancer, PC was associated with hospice enrollment. However, this relationship varied by geographic region, and PC team and facility characteristics. Our findings suggest that regional PC resource availability may contribute to substitution effects between PC and hospice for end-of-life care.
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Objectives: We hoped to understand (1) how parents of seriously ill neonatal intensive care unit patients conceptualize neonatal serious illness, and (2) how parent and physician perspectives on neonatal serious illness might differ. Design: This was a prospective survey study. Setting/Subjects: Parent members of the Courageous Parents Network. ⋯ At the same time, parent responses revealed important differences in perceptions about serious illness between parents and physicians. In addition, parents will likely use any definition of neonatal serious illness differently than clinicians. We therefore propose that our definition be used to identify neonates with serious illness for the purposes of research and clinical care, but should not be used verbatim for communication with parents.
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Background: There is no consensus on what constitutes "early" pediatric palliative care (PPC) referral within pediatric oncology. Few studies report outcomes based on PPC timing. Objectives: Investigate associations between early (<12 weeks) or late (≥12 weeks from diagnosis) outpatient PPC consultation with demographics, advance care planning (ACP), and end-of-life (EOL) outcomes. ⋯ Timing of outpatient PPC was not associated with ACP documentation or other EOL outcomes. In the entire cohort, 73% of PPC patients received hospice, 74% had a DNR order, 87% did not receive CPR at EOL, and 90% died in their preferred location. Conclusions: When using a cutoff of 12 weeks from diagnosis, outpatient PPC timing was only associated with location of death metrics, likely due to high-quality PPC and EOL care among all patients.
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Background: Disparities in end-of-life (EOL) care remain among ethnic/racial minority populations. Choosing hospice care in the United States depends on goals-of-care discussions founded on trust. While studies examine hospice enrollment disparities and others explore trust in hospice settings in general, very few explicitly examine the role of trust in hospice enrollment disparities. ⋯ These factors appear to interact in complex ways, unique to individual patients/families, compounding their impact on trust. Conclusions: While gaining patient/family trust regarding EOL decision making is challenging across all groups, minority patients often experience additional compounding factors impacting trust building. More research is needed to mitigate the negative ways these interacting factors impact trust.