Journal of Palliative Medicine

Background: Symptom burden assessment with the Edmonton Symptom Assessment System (ESAS) has been widely studied among patients in outpatient palliative care (OPC), but fewer reports in home-based palliative care (HBPC), and none has assessed the prognostic value of ESAS scores in HBPC. Methods: This retrospective cohort study compares symptom burden and its prognostic value in adult patients receiving OPC and HBPC services between January 1, 2019, and June 30, 2021. Results: Patients completed the ESAS at the first OPC consultation ( n  = 4086) and at admission to HBPC ( n  = 4087)...

Background and Objectives: This study describes patients' prognostic awareness and palliative care use in the setting of immunotherapy for metastatic non-small cell lung cancer (mNSCLC). Design: We surveyed 60 mNSCLC patients receiving immunotherapy at a large academic medical center; conducted follow-up interviews with 12 survey participants; and abstracted palliative care use, advance directive completion, and death within a year of survey completion from the medical record. Results: Forty seven percent of patients surveyed thought they would be cured; 83% were not interested in palliative care...

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Background: The population of older adults who are unpartnered and childless (i.e., "kinless") is increasing across the globe, and may be at risk for lower quality end-of-life (EoL) experiences due to lack of family support, assistance, and advocacy. Yet, little research exists on the EoL experiences of "kinless" older adults. Objectives: To document associations between family structure (i.e., presence or absence of partner or child) and intensity of EoL experiences (i.e., visits to medicalized settings before death)...

Background: Epidermolysis bullosa (EB) comprises a group of rare genetic conditions that are characterized by fragility of the skin and mucous membranes and formation of blisters with minor trauma. Severe forms can be life limiting. The palliative care needs of children with severe EB are poorly described. Aim: The aim of this case series was to examine the contribution of a pediatric palliative care service to the complex health care needs of children with severe EB. Methods: We present a case series of five children with severe forms of EB who were known to the state-wide Victorian Paediatric Palliative Care Service, with a discussion of our learnings in caring for these children and their families...

Background: Little is known about accuracy and confidence of clinicians' prediction of survival (CPS) in East-Asian countries. Objective: We aimed to examine accuracy of CPS for 7-, 21-, and 42-day survival in palliative inpatients and its association with prognostic confidence. Design: An international prospective cohort study in Japan (JP), Korea (KR), and Taiwan (TW). Setting/Subjects: Subjects were inpatients with advanced cancer admitted to 37 palliative care units in three countries. Measurements: Discrimination of CPS was investigated through sensitivity, specificity, overall accuracy, and area under the receiver operating characteristics curves (AUROCs) according to 7-, 21-, and 42-day survival...

Introduction: Moral distress is a commonly recognized phenomenon among health care providers; however, the experience of moral distress by staff caring for patients who die during an acute care hospital stay has not been previously examined. It also remains unclear how the quality of a death may impact moral distress among these providers. Objectives: We sought to understand levels of moral distress experienced by intern physicians and nurses who provided care during a patient's final 48 hours of life, and how the perceived quality of death impacted moral distress...

In palliative care, many end-of-life (EOL) patients are physically dependent on their caregivers. These patients may also have difficulty expressing their needs because of their underlying disease and are vulnerable to abuse. Factitious disorder imposed on another (FDIA) describes a condition in which an individual intentionally feigns physical or psychological signs or symptoms in another person with the intention of deceiving medical providers. Although FDIA is a form of abuse that palliative care workers must be aware of because of its multiple impacts on EOL care, it has never been reported in the palliative care literature...

Background: Chronic obstructive pulmonary disease (COPD), the sixth leading cause of death in the United States, is associated with higher mortality rates in women. Women also experience tremendous symptom burden, including dyspnea, anxiety, and depression, in comparison to men with COPD. Palliative care (PC) provides symptom management and addresses advanced care planning for serious illness, but little is known about the use of PC in women with COPD. Objective: The purpose of this integrative review was to identify known PC interventions in advanced COPD and to understand the problem of gender and sex disparities...

Background: As patients live longer with stage IV nonsmall cell lung cancer, correlates of end-of-life (EOL) care and experience are increasingly relevant. Methods: We, therefore, prospectively examined associations among psychospirituality (Center for Epidemiologic Studies Depression Scale, Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being), discussions around fear of death and disease progression, and hospital-based EOL care in patients and caregivers. Patients additionally reported symptom burden (MD Anderson Symptom Inventory-Lung Cancer total) and quality of life (QOL) (quality-of-life at EOL)...

Background: Post-acute care outcomes for patients with cancer <65 with multiple payers are largely unknown. Objective: Describe the population and outcomes of younger adults discharged to skilled nursing facility (SNF) and those discharged home or with home health care six months following hospitalization. Design: Descriptive cohort analysis. Setting/Subjects: Using a linkage between the Colorado All Payers Claims Database and the Colorado Central Cancer Registry, we studied patients <65 with stage III or IV advanced cancer between 2012 and 2017...

Background: The hyperactive subtype of delirium is characterized by agitation, restlessness, delusions, and/or hallucinations, which commonly present near end of life (EoL). Symptom relief often requires the use of medications, such as chlorpromazine (CPZ), to reduce patient distress by inducing proportional sedation. Objective: The purpose of this study was to evaluate CPZ's potential role in managing the distress of hyperactive delirium in patients receiving EoL care. Methods: A retrospective observational study among hospitalized patients with advanced cancer at EoL between January 2020 to December 2021...

Background: Pediatric patients often undergo surgery during terminal admissions. However, the involvement and timing of palliative care consults in caring for these patients has not been readily described. Objective: To describe the presence and timing of palliative care consults for pediatric patients who undergo surgical procedures during terminal admissions. Design: Retrospective cohort study using data from the electronic health record. Setting and Participants: Pediatric patients who underwent at least one surgical procedure during a terminal admission at an urban, quaternary hospital in the United States from January 1, 2016 to December 31, 2021...

Background: Hospice family caregiving is often physically and emotionally taxing, but it is unclear how employment status impacts hospice caregiver burden and well-being. Objective(s): To examine the relationship between caregiver burden and well-being, and the moderating role of employment status (i.e., working, not working). Design, Setting/Subjects: This was a secondary data analysis of baseline data from a longitudinal observational study of family caregivers of home hospice cancer patients in the United States...

Extracorporeal membrane oxygenation (ECMO) is an invasive intervention that is both resource- and labor-intensive. It can also be emotionally challenging for all involved. Palliative care (PC) clinicians can support adult patients, families, surrogate decision makers, and the interdisciplinary team (IDT) throughout ECMO, starting at the time of ECMO initiation through discontinuation and to bereavement in the event of a patient's death. In addition to knowing the basics of ECMO circuitry, indications to start ECMO, and the complex decision points throughout treatment, PC clinicians must understand the critical need for specialist and IDT coordination when discussing prognosis and resuscitation, clarifying goals of care, and identifying future treatment options...

Background: The determination of what makes a medical treatment inappropriate is unclear with a small likelihood of consensus. Objectives: This study aimed to explore how clinicians in cardiology perceive "inappropriate treatment" and to collate the common profiles of cardiology patients receiving likely "inappropriate treatment" as perceived by clinicians in a multiethnic Asian context. Methods: A qualitative study was conducted using semistructured in-depth interviews with 32 clinicians involved in the care for cardiology patients at a large national cardiology center in Singapore...

Objective: This report describes a hospice-supported no-fee program to support patients living with all levels of dementia and their caregivers. Background: Our medical system struggles to serve the rapidly increasing numbers of patients with dementia. Hospice of the Valley developed a low-cost six-month program to reduce caregiver stress and reduce neurobehavioral disturbances of patients living with dementia, reduce costs for insurers, and increase hospice referrals. Methods: Data were analyzed from 532 patients living with caregivers admitted over 22 months...

Introduction: Head and neck cancer patients have high rates of psychological distress, which may be exacerbated by the treatments they receive. Many patients who undergo radiation therapy report significant anxiety associated with the thermoplastic mask required for immobilization during treatment. Case Description: This report presents two examples of head and neck cancer patients reporting high mask anxiety, along with a history of claustrophobia, who expressed concern about their abilities to initiate and adhere to treatment...

Cachexia is a multifactorial syndrome that is common in cancer and chronic disease. It is often underdiagnosed and therefore goes untreated or undertreated. Cachexia causes suffering across biopsychosocial domains and affects patients and their loved ones. In this article, a group of clinicians and researchers across cancer care, nutrition, and exercise offers tips about assessment, classification, and management of cachexia, with attention to its stage. The required multimodal management of cachexia mirrors well the interprofessional collaboration that is the mainstay of interdisciplinary palliative care and attention to screening, diagnosis, and management of cachexia is critical to maximize patients' quality of life...

Background: Hospice/palliative care emphasizes excellent care for patients, but what about longer-term caregiver outcomes after their caregiving role? What is the role of services in working to ensure that caregivers can re-engage with all aspects of life, including paid employment given that this is an identified stressor for caregivers? Aim: This hypothesis-generating study aimed to explore self-reported, post-care workforce participation, and any association with hospice/palliative care contact. Design: Cross-sectional random population interviews...