Fast-track hospital end-of-life discharge pathway: is it actually fast? National clinical audit

ObjectivesTo determine adherence to Department of Health and Social Care target of fast-track pathway discharge for end-of-life care within 48 hours.MethodsMulticentre audit in England using retrospective analysis of patient records for fast-track pathway tools submitted between 1 March 2019 and 31 March 2019.ResultsMost patients (72%) were not discharged within the 48-hour target. There was significant variability in success between hospital sites. Delays in discharge were most frequently considered to be secondary to delays in sourcing packages of care and 24-hour care facility placements. Involvement of specialist discharge nurses in paperwork submission improved rates by Commissioning Care Groups. Patients who died in hospital had significantly longer admissions than those who were discharged (discharged 19 days (IQR 11–28) vs died 28 days (IQR 18–42); p=0.039). This was entirely accounted for by increased numbers of days between admission and first suggestion of fast-track pathway discharge in those who died in hospital (discharged 9 days (IQR 5–19), died 15 days (IQR 9–33); p=0.003).ConclusionsWe demonstrated a delay in the fast-track pathway discharge process with significant variation in success of the discharge process at different geographical locations.

Family carer needs in advanced disease: systematic review of reviews

BackgroundFamily carers are vital in the management and delivery of home-based palliative care. Decision-makers need to know what the most commonly expressed unmet needs of family carers are to target available support services.AimTo identify the most commonly expressed needs of family carers of people with an advanced disease, assess the quality of current evidence, and set an agenda for future research and clinical practice.DesignA systematic review of reviews, prospectively registered on PROSPERO. Study quality was assessed using the Joanna Briggs Institute critical appraisal checklist for systematic reviews and research syntheses.Data sourcesMEDLINE, Embase, Emcare, PsycINFO, CINAHL, Informit and Cochrane Library were searched for reviews about the needs of carers looking after patients with advanced disease from 2010 to 2020.ResultsFindings from 21 reviews identified emotional support, disease-specific knowledge, carer role responsibilities, self-care and general practical support as the most commonly expressed needs expressed by family carers. Additionally, access to professional services, formal education opportunities and communication with health professionals were identified as caregivers’ preferred ways of having these needs met. Extraction of carer-specific needs was challenging at times as results were often combined with patient results in reviews.ConclusionPractical difficulties exist in effectively resourcing services to meet the needs of family carers. Information regarding the most commonly expressed needs shared by caregivers and their preferred delivery source can provide an opportunity to focus available support services to achieve the highest possible impact for carers of patients with advanced disease.PROSPERO registration numberCRD42018088678.

Oncology palliative care: access barriers: bibliometric study

ObjectiveTo perform a bibliometric analysis of studies that evaluated the barriers to access to cancer palliative care (PC).MethodsThis was a bibliometric review using MEDLINE; EMBASE; Web Of Science; LILACS and the Cochrane Library. A search was conducted with the terms Barriers, Palliative Care and Cancer. Articles whose objectives targeted barriers to access to PC were considered, regardless of the year of publication. The setting is articles published from 1987 to 2020.ResultsA total of 6158 articles were identified, of which 217 were eligible for analysis. The USA and UK being the countries with the largest number of articles on the subject (n=101, n=18, respectively). After expert analysis, the barriers were grouped into nine categories.ConclusionsBarriers related to symptom control were identified in 19% of the eligible articles, along with barriers related to health, which with 24% of occurrence in the articles, were the most frequently cited barriers. Countries which have implemented PC for some time were those with the greatest number of publications and in journals with the highest impact factors. Cross-sectional study design continues to be the most frequently used in publications.

COVID-19 screening: use of an artificial neural network

ObjectivesCOVID-19 is the biggest pandemic of the 21st century. The disease can be influenced by various sociodemographic factors and can manifest as clinical, pulmonary and gastrointestinal symptoms. This study used an artificial neural network (ANN) model with important sociodemographic factors as well as clinical, pulmonary and gastrointestinal symptoms to screen patients for COVID-19. Patients themselves can screen for these symptoms at home.MethodsData on all registered patients were extracted in autumn. The best ANN model was selected from different combinations of connections, some hidden layers and some neurons in each hidden layer. In this study, 70% of the data were used in the network training process and the remaining 30% were used to evaluate the function of the multilayer, feed-forward, back-propagation algorithm.ResultsThe sensitivity and specificity of the ANN model in diagnosing patients with COVID-19 were 94.5% and 17.4%. In order of priority, clinical symptoms, sociodemographic factors, pulmonary symptoms and gastrointestinal symptoms were important predictive factors for COVID-19 using the ANN model. Screening patients for COVID-19 using clinical symptoms and sociodemographic factors (80% importance) remains essential.ConclusionsHome monitoring of oxygen saturation and body temperature as well as old age and drug addiction can be helpful in self-screening symptoms of COVID-19 at home, thereby preventing unnecessary visits to medical centres and reducing burden on medical services.

Designing the physical environment for inpatient palliative care: a narrative review

BackgroundIt is essential that the physical environments in which inpatient palliative care is provided support the needs of patients and the facilitate the multidimensional delivery of palliative care. This review aims to identify the features and characteristics of inpatient palliative care environments that enhance or detract from the patient experience; and identify opportunities for progress within this field.MethodThree databases were searched: MEDLINE (1946–2020), PsycINFO (1806–2020) and CINAHL (1937–2020). Articles were screened by title and abstract with included studies read in full for data extraction. Data synthesis involved thematic analysis informed by the findings of the included literature. Inclusion criteria were studies with empirical methodology examining adult palliative care in the hospital, hospice or nursing home environment. Studies that examined palliative care delivered within the emergency department, ICU or within the home were excluded, as were those related to paediatric palliative care.ResultsFour main themes were identified: the provision of privacy, facilitating interactions with family, facilitating comfort through homeliness and connections to nature.ConclusionsThe board acceptance of single rooms as the preeminent design solution for supporting privacy, dignity and family interaction, alongside current conceptions of homeliness that typically focus on matters of interior design, are limiting possibilities for further design innovation within palliative care settings. Research that investigates a broader set of design strategies through which the built environment can support care, alongside enhanced interdisciplinary collaboration, could positively contribute to patient and family experiences of inpatient palliative care.

Information provision to older patients receiving palliative chemotherapy: a quality study

ObjectivesCancer treatment has become increasingly successful. However, prolonging and preserving life has become an important goal of therapy since many patients generally receive palliative chemotherapy. The perception of life changes when patients are informed, that no curative treatment is possible. This raises new dilemmas for patients with incurable cancer, but only sparse information is available about the thoughts of these patients.The aim of this study was to explore how older patients experience the information on absence of curative treatment options.MethodsQualitative interviews were performed in eleven older patients with incurable upper gastrointestinal cancer receiving first-line palliative chemotherapy. Median age was 74 (65–76) years. We used a qualitative approach to collect data through semistructured individual interviews conducted at the hospital or by telephone interviews by an experienced researcher. The thematic analysis was conveyed by Braun and Clarke.ResultsThe interview findings were grouped around three main themes: hope of being cured, hearing but not comprehending, and desired milestones to reach. Further, it was determined that patients hid their feelings and avoided talking about the disease with the health professionals due to fear of being told the truth.ConclusionsReceiving information about their incurable cancer was an ongoing dilemma for the patients. Following the message, patients shared thoughts about reaching important milestones in life, spending time with their family or hope for a cure to be found.

Prostate cancer: unmet supportive and palliative care needs: national survey of patients and family carers

ObjectivesMen living with prostate cancer have supportive and palliative needs. However, few studies detail unmet needs (vs quality of life measurement) or include data from those with advanced disease. We aimed to identify unmet needs of people living with prostate cancer (men, family carers), including those with advanced disease.MethodsMixed-methods national survey (patient Supportive Care Needs Survey; Carer Support Needs Assessment Tool) and health status (EuroQol Visual Analogue Scale). Quantitative data were explored using regression analysis. Free text data were subjected to thematic analysis.Results216 men (mean age 65±8.5 years; active cancer 136 [63%]) and 97 carers (68 (70%) spouse/partner) provided data. 133 men (62%) reported moderate-to-high need which was more likely in advanced disease. Men’s health status was worse with active vs remitted disease (mean difference −11; 95% CI −17 to −5; p<0.001). 85 (88%) carers reported at least one unmet need relating to ‘enabling them to care’ and 83 (86%) relating to ‘their own well-being’. Carers with chronic illnesses had more unmet needs (p=0.01 to p=0.04) and patient receipt of palliative care independently predicted higher unmet carer needs (p=0.02).Free text data demonstrated widespread burden with: (1) poor communication/information, including about palliative care; (2) poorly managed symptoms/concerns and (3) poor care co-ordination. Incontinence, sexual dysfunction and hormone side-effects were serious problems, often left unaddressed.ConclusionsMany living with prostate cancer continue with wide-ranging concerns. Lack of systematic, ongoing needs assessment and poor communication compound inadequate clinical pathways. Person-centred care, interdisciplinary working and integrated palliative care should be resourced.

Losing a child due to a life-limiting diagnosis—parental well-being and quality of life: nationwide survey

ObjectiveLosing a child is burdensome with potential long-term impact on the parents’ well-being and quality of life. The aim was to investigate parental well-being and quality of life 3–5 years after losing a child due to life-limiting diagnoses and to identify associated factors in order to target future interventions.MethodsAll parents, who lost a child (<18 years) due to life-limiting diagnoses in the period 2012–2014 in Denmark, were invited to complete a self-administered questionnaire. A seven-point Visual Digital Scale (VDS) was used to assess issues of well-being and quality of life including physical health, anxiety, depression and sleep quality which were combined into a cumulative symptom index. Associations were assessed by means of ordinal logistic regression models.ResultsIn all, 152 (38%) children were represented by 136 mothers and 57 fathers. Totally, 17.6% of the mothers and 14.0% of the fathers had ≥2 symptoms (assessed by the symptom index). Parents with lower education had 2.11 (95% CI: 1.01 to 4.40) times higher odds of having more symptoms than parents with higher education. Unmarried parents had 2.14 (95% CI: 1.03 to 4.42) times higher odds of having more symptoms than married parents. Ten per cent of the parents reported poor overall quality of life.ConclusionAccording to the VDS, 1 out of 10 parents experienced poor overall quality of life 3–5 years after the loss. Every sixth had two or more symptoms assessed by the symptom index. Associated factors for poor quality of life suggest attention to particularly unmarried parents and parents with lower education.