Journal of palliative medicine
-
Background: A holistic needs assessment is recommended in people with cancer at key stages, including soon after diagnosis. For people with thoracic cancer, there is a lack of data obtained routinely at this time point. Objective: To identify the most common and/or distressing supportive and palliative needs present soon after diagnosis using a specifically developed questionnaire. Methods: As part of a local rehabilitation service, patients within three to six weeks of a diagnosis of thoracic cancer were invited to complete the Sheffield Profile for Assessment and Referral to Care (SPARC©) questionnaire. Results: For a 26-month period, 738 patients completed the questionnaire, representing about 70% of all patients diagnosed with thoracic cancer during this time. ⋯ Two psychological issues followed: worrying about effects of the illness on others, feeling anxious, both present in 67%. Despite most patients reporting talking to health professionals about their condition, 20%-30% wanted further information. Conclusions: These findings represent the largest cohort of patients with thoracic cancer completing the SPARC questionnaire soon after diagnosis, and provide detailed information on the high level of need that thoracic oncology services must be able to respond to.
-
Background: Futile or potentially inappropriate care (futile/PIC) for dying inpatients leads to negative outcomes for patients and clinicians. In the setting of rising end-of-life health care costs and increasing physician burnout, it is important to understand the causes of futile/PIC, how it impacts on care and relates to burnout. Objectives: Examine causes of futile/PIC, determine whether clinicians report compensatory or avoidant behaviors as a result of such care and assess whether these behaviors are associated with burnout. Design: Online, cross-sectional questionnaire. Setting/Subjects: Clinicians at two academic hospitals in New York City. Methods: Respondents were asked the frequency with which they observed or provided futile/PIC and whether they demonstrated compensatory or avoidant behaviors as a result. A validated screen was used to assess burnout. Measurements: Descriptive statistics, odds ratios, linear regressions. Results: Surveys were completed by 349 subjects. ⋯ Both witnessing and providing PIC were statistically significantly (p < 0.05) associated with compensatory and avoidant behaviors, but more strongly associated with avoidant behaviors. Provision of PIC increased the likelihood of avoiding the patient's loved ones by a factor of 2.40 (1.82-3.19), avoiding the patient by a factor of 1.83 (1.32-2.55), and avoiding colleagues by a factor of 2.56 (1.57-4.20) (all p < 0.001). Avoiding the patient's loved ones (β = 0.55, SE = 0.12, p < 0.001), avoiding the patient (β = 0.38, SE = 0.17; p = 0.03), and avoiding colleagues (β = 0.78, SE = 0.28; p = 0.01) were significantly associated with burnout. Conclusions: Futile/PIC, provided or observed, is associated with avoidance of patients, families, and colleagues and those behaviors are associated with burnout.
-
Background: Little is known about clinical symptom burden, dementia, and social isolation in the last year of life among older adults. Objective: To describe and contrast the type and severity of symptom burden for older decedents with and without dementia, and whether specific symptoms and presence of dementia are associated with limitations in social participation in the last year of life. Design: Cross-sectional logistic regression analysis of a population-based study. ⋯ Conclusion: Symptom burden is higher in patients with dementia. Dementia and physical symptoms are associated with social activity limitations. Older patients with dementia or physical symptoms may benefit from earlier emphasis on palliative care and quality of life.
-
Background: Crises that occur in home hospice care affect family caregivers' satisfaction with care and increase risk of disenrollment. Because hospice care focuses on achieving a peaceful death, understanding the prevalence and nature of crises that occur in this setting could help to improve end-of-life outcomes. Objective: To ascertain the prevalence and nature of, as well as factors associated with crises in the home hospice setting as reported by family caregivers. ⋯ Conclusions: A large minority of caregivers report perceiving a crisis while their loved one was receiving home hospice care. Physical (symptoms), psychological (emotional distress) function, and caregiver burden constituted the crises reported. Further studies are needed to better understand and address these gaps in care.
-
Background: Lung transplant recipients who experience serious illness could benefit from specialty palliative care (SPC), but evidence suggests that referral has been rare. Objective: Examine the characteristics of post-transplant SPC encounters, utilization trends, and patient characteristics associated with SPC at a center with established SPC services. Design: Retrospective cohort study of SPC utilization by 597 lung transplant recipients transplanted between 2010 and 2015. ⋯ Conclusions: Lung transplant recipients may have palliative care needs early after transplantation. Increasing utilization suggests greater awareness of or changing attitudes about the utility of SPC for lung transplant recipients. Understanding transplant recipients' palliative care needs and transplant physicians' views of SPC is critical to improving the provision of SPC in lung transplantation.