Journal of palliative medicine
-
Background: Improving quality of life (QOL) is important in cancer palliative care (PC) patients. "Spiritual pain" (SP) is common in this population, but it is unknown how it affects QOL. Objective: To study the associations between SP and QOL in cancer patients in PC. Design: Cross-sectional. Settings/Subjects: Cancer patients assessed at a PC clinic in Puente Alto, Chile, were enrolled in a longitudinal study to characterize patients' end of life. Inclusion criteria included age ≥18, a primary caregiver, not having delirium, and a Karnofsky performance status (KPS) ≤80. Measurements: After consenting patients completed baseline surveys that included demographics, single-item questions to assess SP (0-10), financial distress, spirituality-related variables and questionnaires to assess QOL (0-100), and physical (Global distress score-physical) and psychological distress (Hospital Anxiety and Depression Scale), baseline data analyses to explore associations between SP and QOL were adjusted for potential confounders. Results: Two hundred and eight patients were enrolled: mean age was 64, 50% were female, and 67% had SP. In univariate analysis, SP was significantly associated with lower QOL (coefficient [95% confidence interval]: -1.88 [-2.93 to -0.84], p < 0.001). ⋯ In the multivariate analysis, QOL remained independently associated with SP (-1.25 [-2.35; to -0.15], p < 0.026), religious coping (11.74 [1.09 to 22.38], p < 0.031), and physical distress (-0.52 [-0.89 to -0.16], p < 0.005). Conclusions: SP is associated with QOL in cancer patients in PC. SP should be regularly assessed to plan for interventions that could impact QOL. More research is needed.
-
Review
Perceptions of a Good Death in Children with Life-Shortening Conditions: An Integrative Review.
Background: For children with life-shortening illness, achieving a "good death" can be a tacit goal. There is little understanding of how different stakeholders perceive what a "good death" might be. Objective: To review empirical literature to construct an understanding of a "good death" for children with life-shortening conditions. Design: An integrative review approach was followed. ⋯ Framed using a health care system perspective, a concept map that interprets a good death in children with life-shortening conditions is represented. Conclusions: A single yet holistic understanding of a good death experienced in the "real world" is suggested. Pediatric health and social care providers, and even policy makers, can use this new understanding to conceive alternative approaches to enhance support to dying children and their families.
-
Patients with End-Stage Renal Disease and Acute Surgical Abdomen: Opportunities for Palliative Care.
Background: End-stage renal disease (ESRD) is a life-limiting condition that is often complicated by acute abdominal emergency. Palliative care (PC) has been shown to improve the quality of life in patients with serious illness and yet is underutilized. We hypothesize that ESRD patients with abdominal emergency have high unmet PC needs. Objective: To characterize the outcomes of ESRD patients with acute surgical abdomen, define PC utilization patterns, and identify areas of unmet PC needs. Design: Retrospective study querying the National Inpatient Sample database (2009-2013). Setting and Subjects: Subjects were identified using ICD-9 codes for those aged ≥50 with preexisting diagnosis of ESRD with an acute abdominal emergency diagnosis of gastrointestinal perforation, obstruction, or ischemia. Measurements: Outcomes included PC rate, in-hospital mortality, discharge disposition, and intensity of care. ⋯ PC was associated with shorter hospital stay. Predictors of PC included increasing age, severity of underlying illness, white race, teaching hospitals, and the Western region. Conclusions: Patients with ESRD admitted for acute abdominal emergency have high risk for mortality and functional dependence. Despite this, few receive PC and have a high utilization of nonbeneficial life support at the end of life.
-
Background/Objective: Breathlessness is a highly prevalent and distressing symptom in patients with cancer and advanced chronic diseases. Symptom management is often overlooked. We explored the experiences of patients, caregivers, and health care providers (HCPs) and their expectations for future service developments. Design: This is a multiperspective qualitative study drawing on semistructured interviews. Setting/Subjects: Participants were recruited from palliative, respiratory, and cardiology departments of the Munich University Hospital and from a chronic obstructive pulmonary disease (COPD) patient group. Measurements: Interviews were analyzed using qualitative content analysis. ⋯ Specialist breathlessness services are perceived as addressing important gaps in professional practice from the viewpoint of all stakeholders. Accessibility and collaboration with other local health care services are important features of such specialist services. Conclusions: Chronic refractory breathlessness in advanced disease is managed insufficiently for most patients, caregivers, and HCPs. Increased knowledge about effective interventions and availability of skills-based training for patients, caregivers, and HCPs would help in breathlessness management.