Abstract
Bajwah S, Oluyase AO, Yi D, et al. The effectiveness and cost-effectiveness of hospital-based specialist palliative care for adults with advanced illness and their caregivers. Cochrane Library 2020; doi.org/10.1002/14651858.CD012780.pub2
Serious illness is often characterized by physical/psychological problems, family support needs, and high health care resource use. Hospital-based specialist palliative care (HSPC) has developed to assist in better meeting the needs of patients and their families and potentially reducing hospital care expenditure. There is a need for clarity on the effectiveness and optimal models of HSPC, given that most people still die in hospital and also to allocate scarce resources judiciously.
The objectives of this study were to assess the effectiveness and cost-effectiveness of HSPC compared with usual care for adults with advanced illness (hereafter patients) and their unpaid caregivers/families. The authors searched CENTRAL, CDSR, DARE, and HTA databases through the Cochrane Library; MEDLINE; Embase; CINAHL; PsycINFO; CareSearch; National Health Service Economic Evaluation Database (NHS EED), and two trial registers to August 2019, together with checking of reference lists and relevant systematic reviews, citation searching, and contact with experts to identify additional studies.
They included randomized controlled trials (RCTs) evaluating the impact of HSPC on outcomes for patients or their unpaid caregivers/families, or both. HSPC was defined as specialist palliative care delivered by a palliative care team that is based in a hospital providing holistic care, co-ordination by a multidisciplinary team, and collaboration between HSPC providers and generalists. HSPC was provided to patients while they were admitted as inpatients to acute care hospitals, outpatients or patients receiving care from hospital outreach teams at home. The comparator was usual care, defined as inpatient or outpatient hospital care without specialist palliative care input at the point of entry into the study, community care or hospice care provided outside of the hospital setting.
Results demonstrated that the authors identified 42 RCTs involving 7779 participants (6678 patients and 1101 caregivers/family members). Twenty-one studies were with cancer populations, 14 were with noncancer populations (of which 6 were with heart failure patients), and 7 with mixed cancer and noncancer populations (mixed diagnoses). HSPC was offered in different ways and included the following models: ward-based, inpatient consult, outpatient, hospital-at-home or hospital outreach, and service provision across multiple settings that included hospital. For the authors' main analyses, they pooled data from studies reporting adjusted endpoint values. Forty studies had a high risk of bias in at least one domain. Compared with usual care, HSPC improved patient health-related quality of life with a small effect over usual care. HSPC also improved other person-centered outcomes. It reduced patient symptom burden with a small effect size over usual care. HSPC improved patient satisfaction with care with a small effect size over usual care. Using home death as a proxy measure for achieving patient's preferred place of death, patients were more likely to die at home with HSPC compared with usual care. Data on pain (4 studies, 525 participants) showed no evidence of a difference between HSPC and usual care. Eight studies (n = 1252 participants) reported on adverse events and very low-quality evidence did not demonstrate an effect of HSPC on serious harms. Two studies (170 participants) presented data on caregiver burden and both found no evidence of effect of HSPC (very low-quality evidence). The authors included 13 economic studies (2103 participants). Overall, the evidence on cost-effectiveness of HSPC compared with usual care was inconsistent among the four full economic studies. Other studies that used only partial economic analysis and those that presented more limited resource use and cost information also had inconsistent results (very low-quality evidence). The authors conclude that very low- to low-quality evidence suggests that when compared with usual care, HSPC may offer small benefits for several person-centered outcomes including patient health-related quality of life, symptom burden, and patient satisfaction with care, while also increasing the chances of patients dying in their preferred place (measured by home death). Although the authors note they found no evidence that HSPC causes serious harms, the evidence was insufficient to draw strong conclusions. Although these are only small effect sizes, they may be clinically relevant at an advanced stage of disease with limited prognosis, and are person-centered outcomes important to many patients and families. More well-conducted studies are needed to study populations with nonmalignant diseases and mixed diagnoses, ward-based models of HSPC, 24 hours access (out-of-hours care) as part of HSPC, pain, achieving patient-preferred place of care, patient satisfaction with care, caregiver outcomes (satisfaction with care, burden, depression, anxiety, grief, and quality of life), and cost-effectiveness of HSPC. In addition, research is needed to provide validated person-centered outcomes to be used across studies and populations.
Moore SE, Jones-Eversley SD, Tolliver WF, et al. Six feet apart or six feet under: The impact of COVID-19 on the Black community. Death Studies 2020. [E-pub ahead of time]; https://doi.org/10.1080/07481187.2020.1785053
To date, 300,000+ people in the United States have died from the coronavirus disease 2019 (COVID-19) pandemic. In this article, the authors discuss COVID-19 relative to Black people and their overrepresentation among those who are infected and die from the disease. Their dying, death, and grief experiences are explored through a cultural and spiritual lens. Physical distancing, social isolation, misinformation, and restrictive burials and cremations now elicited by this unprecedented pandemic have had diminished familial, cultural, emotional, and economic impacts on the Black community. Implications for public health and Black peoples' involvement in the political process are also addressed.
Dreier LA, Zernikov B, Wager J. Quantifying the Language Barrier—A Total Survey of Parents' Spoken Languages and Local Language Skills as Perceived by Different Professions in Pediatric Palliative Care. Children 2020(7);118:doi.org/10.3390/children7090118
To date, there are no specific figures on the language-related characteristics of families receiving pediatric palliative care. This study aims to gain insights into the languages spoken by parents, their local language skills, and the consistency of professional assessments on these aspects. Using an adapted version of the “Common European Framework of Reference for Languages,” the languages and local language skills of parents whose children were admitted to an inpatient pediatric palliative care facility (n = 114) were assessed by (1) medical staff and (2) psychosocial staff. Nearly half of the families did not speak the local language as their mother tongue. The most frequently spoken language was Turkish. Overall, the medical staff attributed better language skills to parents than the psychosocial staff did. According to them, only 27.0% of mothers and 38.5% of fathers spoke the local language at a high level, whereas 37.8% of mothers and 34.6% of fathers had no or rudimentary language skills. The results provide important information on which languages pediatric palliative care practitioners must be prepared for. They sensitize to the fact that even within an institution, there can be discrepancies between the language assessments of different professions.
Mandelli, S., Riva, E., Tettamanti, M. et al. How palliative care professionals deal with predicting life expectancy at the end of life: predictors and accuracy. Support Care Cancer 2020. [E-pub ahead of time]; doi.org/10.1007/s00520-020-05720-6
The aim of this study was to assess the accuracy of hospice staff in predicting survival of subjects admitted to hospice, exploring the factors considered most helpful by the hospice staff to accurately predict survival. Five physicians and 11 nurses were asked to predict survival at admission of 827 patients. Actual and predicted survival times were divided into ≤1 week, 2–3 weeks, 4–8 weeks, and ≥2 months, and the accuracy of the estimates was calculated. The staff members were each asked to score 17 clinical variables that guided them in predicting survival and we analyzed how these variables impacted the accuracy. Results demonstrated that physicians' and nurses' accuracy of survival of the patients was 46% and 40%, respectively. Survival was underestimated in 20% and 12% and overestimated in 34% and 48% of subjects. Both physicians and nurses considered metastases, comorbidities, dyspnea, disability, tumor site, neurological symptoms, and confusion very important in predicting patients' survival with nurses assigning more importance to intestinal symptoms and pain too. All these factors, with the addition of cough and/or bronchial secretions, were associated with physicians' greater accuracy. In the multivariable models, intestinal symptoms and confusion continued to be associated with greater predictive accuracy. No factors appreciably raised nurses' accuracy. The authors conclude that some clinical symptoms rated as relevant by the hospice staff could be important for predicting survival. However, only intestinal symptoms and confusion significantly improved the accuracy of physicians' predictions, despite the high prevalence of overestimated survival.
Weaver WS, October T, Feudtner C, Hinds PS. “Good-parent beliefs”: Research, concept, and clinical practice. Pediatr 2020. [E-pub ahead of time]; DOI: 10.1542/peds.2019-4018
Parents of ill children have willingly identified their personal beliefs about what they should do or focus on to fulfill their own internal definition of being a good parent for their child. This observation has led to the development of the good-parent beliefs concept over the past decade. A growing qualitative, quantitative, and mixed-methods research base has explored the ways that good-parent beliefs guide family decision making and influence family relationships. Parents have expressed comfort in speaking about their good-parent beliefs. Whether parents achieve their unique good-parent beliefs definition affects their sense of whether they did a good job in their role of parenting their ill child. In this state-of-the-art article, the authors offer an overview of the good-parent beliefs concept over the past decade, addressing what is currently known and gaps in what we know, and explore how clinicians may incorporate discussions about the good-parent beliefs into clinical practice.