Death and infection were closely linked from the start of the HIV epidemic, until successful treatments became available. The initial impact of mostly young, gay men dying from HIV was powerful in shaping UK responses. Neoliberal discourses developed at the same time, particularly focusing on how citizens (rather than the state) should take responsibility to improve health. Subsequently “successful ageing” became an allied discourse, further marginalising death discussions. Our study reflected on a broad range of meanings around death within the historical UK epidemic, to examine how dying narratives shape contemporary HIV experiences. Fifty-one participants including people living with HIV, professionals, and activists were recruited for semistructured interviews. Assuming a symbolic interactionist framework, analysis highlighted how HIV deaths were initially experienced as not only traumatic but also energizing, leading to creativity. With effective antiretrovirals, dying changed shape (e.g., loss of death literacy), and better integration of palliative care was recommended.
Background: Population-based data are presented on the nature of dying in intellectual disability services.
Methods: A retrospective survey was conducted over 18 months with a sample of UK-based intellectual disability service providers that supported over 12,000. Core data were obtained for 222 deaths within this population. For 158 (71%) deaths, respondents returned a supplemented and modified version of VOICES-SF.
Results: The observed death was 12.2 deaths per 1,000 people supported per year, but just over a third deaths had been deaths anticipated by care staff. Mortality patterns, place of usual care and availability of external support exerted considerable influence over outcomes at the end of life.
Conclusion: Death is not a common event in intellectual disability services. A major disadvantage experienced by people with intellectual disabilities was that their deaths were relatively unanticipated. People with intellectual disabilities living in supported living settings, even when their dying was anticipated, experienced poorer outcomes.
Background: Anticipatory prescribing (AP) of injectable medications in advance of clinical need is established practice in community end-of-life care. Changes to prescribing guidelines and practice have been reported during the COVID-19 pandemic.
Aims and objectives: To investigate UK and Ireland clinicians’ experiences concerning changes in AP during the COVID-19 pandemic and their recommendations for change.
Methods: Online survey of participants at previous AP national workshops, members of the Association for Palliative Medicine of Great Britain and Ireland and other professional organisations, with snowball sampling.
Results: Two hundred and sixty-one replies were received between 9 and 19 April 2020 from clinicians in community, hospice and hospital settings across all areas of the UK and Ireland. Changes to AP local guidance and practice were reported: route of administration (47%), drugs prescribed (38%), total quantities prescribed (35%), doses and ranges (29%). Concerns over shortages of nurses and doctors to administer subcutaneous injections led 37% to consider drug administration by family or social caregivers, often by buccal, sublingual and transdermal routes. Clinical contact and patient assessment were more often remote via telephone or video (63%). Recommendations for regulatory changes to permit drug repurposing and easier community access were made.
Conclusions: The challenges of the COVID-19 pandemic for UK community palliative care has stimulated rapid innovation in AP. The extent to which these are implemented and their clinical efficacy need further examination.
Dealing with death and bereavement in the context of the Covid-19 Pandemic will present significant challenges for at least the next three months. The current situation does not allow for families andbcommunities to be involved in the process of death in ways in which they would normally hope or expect to be. In addition, mortality rates will disproportionately affect vulnerable households. The government has identified the following communities as being at increased risk: single parent households; multi-generational Black and Minority Ethnic groups; men without degrees in lone households and/or in precarious work; small family business owners in their 50s; and elderlyhouseholds. Our study focused on these groups. This report presents a summary of findings and key recommendations by a team of anthropologists from the London School of Economics who conducted a public survey and 58 cross-community interviews between 3 and 9 April 2020. It explores ways to prepare these communities and households for impending deaths with communications and policy support. More information on the research methodology, data protection and ethical procedures is available in Appendix 1. A summary of relevant existing research can be found in Appendix 2. A list of key contacts across communities for consultation is available on request. Research was focused on “what a good death looks like” for people across all faiths and for vulnerable groups. It examined how communities were already adapting how they dealt with processes of dying, burials, funerals and bereavement during the pandemic, and responding to new government regulations. It specifically focused on five transitions in the process of death, and what consultation processes, policies and communications strategies could be mobilised to support communities through these phases.
OBJECTIVES: Delirium is common and distressing in palliative care settings. This survey aims to describe current practice regarding delirium identification in specialist palliative care units (SPCU), such as inpatient hospices, in the UK.
METHODS: An 18-item anonymous online survey was distributed by Hospice UK to their network of clinical leads (n=223), and to their research mailing list (n=228). The survey was also sent to the chair of the Hospice UK executive clinical leads forum for direct dissemination to forum representatives (n=20). Clinical leads and forum representatives were asked to distribute the survey to healthcare staff in their SPCUs.
RESULTS: 220 SPCU staff (48% nurses; 31% doctors; 10% healthcare assistants) completed the survey. Approximately half reported using clinical judgement alone to screen (97/204; 48%) and/or diagnose (124/220; 56%) delirium. Over a third used an assessment tool to screen for delirium (76/204; 37%). The majority (150/220; 68%) reported screening in response to clinical symptoms, while few reported routine on-admission (11/220; 5%) or daily-during-admission (12/220; 6%) screening. Most respondents had received some training on delirium (137/220; 62%). However, 130/220 (59%) said their SPCU did not have a training programme for delirium screening and only 79/220 (36%) reported that their SPCU had delirium clinical guidelines. The main barriers to routine screening included: lack of delirium training, lack of guidelines and complexity of patient's conditions.
CONCLUSION: There is variation in practice for delirium screening and diagnosis in SPCUs. Clinical guidelines for delirium, including consensus on which screening tools to use, are needed for this setting.
Objectives: Hospital death is comparatively common in people with haematological cancers, but little is known about patient preferences. This study investigated actual and preferred place of death, concurrence between these and characteristics of preferred place discussions.
Methods: Set within a population-based haematological malignancy patient cohort, adults (=18 years) diagnosed 2004–2012 who died 2011–2012 were included (n=963). Data were obtained via routine linkages (date, place and cause of death) and abstraction of hospital records (diagnosis, demographics, preferred place discussions). Logistic regression investigated associations between patient and clinical factors and place of death, and factors associated with the likelihood of having a preferred place discussion.
Results: Of 892 patients (92.6%) alive 2 weeks after diagnosis, 58.0% subsequently died in hospital (home, 20.0%; care home, 11.9%; hospice, 10.2%). A preferred place discussion was documented for 453 patients (50.8%). Discussions were more likely in women (p=0.003), those referred to specialist palliative care (p<0.001), and where cause of death was haematological cancer (p<0.001); and less likely in those living in deprived areas (p=0.005). Patients with a discussion were significantly (p<0.05) less likely to die in hospital. Last recorded preferences were: home (40.6%), hospice (18.1%), hospital (17.7%) and care home (14.1%); two-thirds died in their final preferred place. Multiple discussions occurred for 58.3% of the 453, with preferences varying by proximity to death and participants in the discussion.
Conclusion: Challenges remain in ensuring that patients are supported to have meaningful end-of-life discussions, with healthcare services that are able to respond to changing decisions over time.
Background: End of life (EoL) care becomes more complex and increasingly takes place in the community, but there is little data on the use of general practice (GP) services to guide care improvement. This study aims to determine the trends and factors associated with GP consultation, prescribing and referral to other care services amongst cancer patients in the last year of life.
Methods: A retrospective cohort study of cancer patients who died in 2000–2014, based on routinely collected primary care data (the Clinical Practice Research DataLink, CPRD) covering a representative sample of the population in the United Kingdom. Outcome variables were number of GP consultations (primary), number of prescriptions and referral to other care services (yes vs no) in the last year of life. Explanatory variables included socio-demographics, clinical characteristics and the status of palliative care needs recognised or not. The association between outcome and explanatory variables were evaluated using multiple-adjusted risk ratio (aRR).
Results: Of 68,523 terminal cancer patients, 70% were aged 70+, 75% had comorbidities and 45.5% had palliative care needs recognised. In the last year of life, a typical cancer patient had 43 GP consultations (Standard deviation (SD): 31.7; total = 3,031,734), 71.5 prescriptions (SD: 68.0; total = 5,074,178), and 21(SD: 13.0) different drugs; 58.0% of patients had at least one referral covering all main clinical specialities. More comorbid conditions, prostate cancer and having palliative care needs recognised were associated with more primary care consultations, more prescriptions and a higher chance of referral (aRRs 1.07–2.03). Increasing age was related to fewer consultations (aRRs 0.77–0.96), less prescriptions (aRR 1.09–1.44), and a higher chance of referral (aRRs 1.08–1.16) but less likely to have palliative care needs recognised (aRRs 0.53–0.89).
Conclusions: GPs are very involved in end of life care of cancer patients, most of whom having complex care needs, i.e. older age, comorbidity and polypharmacy. This highlights the importance of enhancing primary palliative care skills among GPs and the imperative of greater integration of primary care with other healthcare professionals including oncologists, palliative care specialists, geriatricians and pharmacists. Research into the potential of deprescribing is warranted. Older patients have poorer access to both primary care and palliative care need to be addressed in future practices.
Introduction: The mortality of patients with neck-of-femur (NOF) fractures remains high, with increasing recognition of a subgroup of patients with predictable mortality. The role of palliative care in this group is poorly understood and underdeveloped. This research aims to investigate current clinician attitudes toward palliative care for patients with NOF fracture, and explore processes in place for early identification for patients nearing the end of life.
Materials and Methods: An online survey was constructed with reference to National Institute for Health and Clinical Excellence end-of-life guidelines (CG13) and distributed to multidisciplinary teams involved in the care of NOF fracture patients in 4 hospitals of contrasting size and location in the United Kingdom.
Results: Forty health-care professionals with a broad range of seniority and roles responded. The palliative care team was felt to have several potential roles in the care of NOF fracture patients, but there was difference of opinion between specialties about what these were. A number of barriers to palliative referral were identified, including stigma and active surgical management. The majority (75%) felt that all NOF fracture patients should have a discussion about ceiling of care, with difference of opinion about who should do so, and when.
Discussion: As the elderly population has grown, so too has the volume of NOF fracture patients. It is increasingly important to identify and escalate patients who have poor prognosis following hip fracture and ensure they benefit from palliative care where appropriate. This survey demonstrates a barrier to addressing the care of these patients and a lack of consensus on identification and referral to appropriate palliative care planning.
Conclusions: There should be close communication between specialties with regard to requirements for palliative care in NOF fracture patients, with ongoing education and clear local and national guidance to ensure they receive the right care at the right time.
The daughter of a man who successfully fought to establish that patients have a right to be consulted on cardiopulmonary resuscitation (CPR) has launched a High Court challenge against Matt Hancock, the health and social care secretary for England.
Kate Masters has written a letter before action to Hancock after news reports suggested that blanket bans on CPR were being imposed during the covid-19 pandemic.
In the letter, she called on Hancock to give an emergency direction to all healthcare professionals providing that “do not attempt cardiopulmonary resuscitation” (DNACPR) orders must not be imposed unless the patient or family have been consulted and certain information provided.
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Providing quality end-of-life care for older peopleis one of our biggest challenges in this newCOVID-19 era. Advanced age, because of its asso-ciation with a range of physical comorbidities, is associated with greater mortality with COVID-19. Specifically, case fatality rates in the 70+age group range from 8.6% to 13.4% compared with 0.0026–0.3% in those under 45 (Ruan,2020;Zhouet al.,2020). However, vulnerability is not con-ferred by physiological factors alone, but addition-ally by psychosocial factors such as ageism and ethical considerations such as distributive justice (Stirling,2020;Truoget al.,2020). Those who are at high risk for COVID-19 are the same patients we take care of in geriatric psychiatry, geriatrics,nursing home, hospice, and palliative care, that is,older, ill, frail, cognitively impaired, at high risk of delirium with mental and physical comorbidities (van den Brinket al.,2017). An acute COVID infection may be, as Ballentine (2020) suggested,“what collapses the house of cards” for our vulnerable patients.
The COVID-19 pandemic poses numerous – and substantial – ethical challenges to health and healthcare. Debate continues about whether there is adequate protective equipment, testing and monitoring, and about when a vaccine might become available and social restrictions might be lifted. The thorny dilemmas posed by triage and resource allocation also attract considerable attention, particularly access to intensive care resources, should demand outstrip supply.
But the “COVID fog” clouds more than the intensive care unit. The provision and uptake of non-COVID related treatment is declining, due to the de-prioritisation of some services and interventions, alongside non-COVID patients’ fears of contracting the virus; difficult conversations are being held in suboptimal circumstances; and final farewells and death rituals have been disrupted. Healthcare personnel, meanwhile, are facing moral distress and, for some, difficulties arising from undertaking new roles in unfamiliar settings.
Objective: Patients in the last year of life experience medical emergencies which may lead to an emergency attendance by ambulance clinicians and some patients having a transfer to hospital even when this is unwanted by patients, carers or professionals. Here we report the patient characteristics and outcomes of a 24-hour hospice nursing telephone advice service to support an ambulance service.
Method: An evaluation of the outcomes of ambulance calls to a nursing telephone advice service for people living in northwest London, UK, attended at home during a 6-month period by the London Ambulance Service, whose clinicians then sought advice from the hospice’s 24 hours’ telephone line.
Results: Forty-five attendances of 44 acutely ill people with palliative care needs resulted in a telephone call. Thirteen patients (30%) were male and the median age was over 80 years. Thirty-two attendances (71%) were managed without a transfer to hospital, with telephone advice from the hospice and in some cases arrangements for another clinician to visit. Seven attendances (16%) resulted in a transfer to hospital, of which at least five led to an admission. Six attendances (13%) resulted in a notification of the patient’s death.
Conclusions: This preliminary study shows the feasibility, outcomes and acceptability of telephone advice to support ambulance clinicians attending patients with palliative care needs. The service was associated with low rates of subsequent transfer to hospital. Further controlled research is needed to assess the clinical and cost-effectiveness of the service.
Background: Multisource feedback provides ratings of a trainee doctor’s performance from a range of assessors and enables 360 degree feedback on communication skills and team working behaviours. It is a tool used throughout palliative medicine training in the UK. There are limited data on the value of multisource feedback from a palliative medicine trainee perspective.
Aim: To study the views of palliative medicine trainees regarding multisource feedback as an educational tool to develop communication skills.
Design: A multimodal study encompassing a focus group and questionnaire mailed to all deanery palliative doctors.
Setting/participants: All palliative medicine trainees within a UK training deanery.
Results: Over half of responding trainees thought multisource feedback had little or no impact on their clinical practice. Improvements in delivery of multisource feedback to maximise learning were identified, including skilled feedback and facilitation by educational supervisors.
Conclusions: Despite multisource feedback currently having limited benefits, a number of recommendations are suggested to improve this.
Objective: The research project addressed the need to support young adults with issues relating to sexuality and relationships though the development of guidance and standards for practice.
Methods: An action research project underpinned by an interpretivist qualitative framework. Participants were recruited to the project via three hospices in the UK. Data from four focus groups were analysed thematically using a process of constant comparison.
Results: Sixteen young adults with life-limiting or life-threatening conditions aged 21–33 years participated in the study. Three significant themes were identified: sexuality and the transition to adulthood, recognising the significance of sex and relationships, and realising sexual rights.
Conclusion: Sexuality and relationships play an important role in the transition to adulthood for people with life-limiting or life-threatening conditions living in the UK. While young adults with these conditions may have considerable support needs, it is important to balance this with the freedom to exercise choice and to make independent decisions. Sex negativity can have an adverse impact on the experiences of young adults and creates barriers. Improved ongoing access to sex education and the provision of enabling environments that afford privacy and safety are important to support young adults with sexuality and relationships.
Background: Optimizing quality of life (QoL) remains the central tenet of care in patients with incurable cancer; however, determinants of QoL are not clear. The objective of the current study was to examine which factors influence QoL in patients with incurable cancer.
Methods: A multicenter study of adult patients with advanced cancer was conducted in Ireland and the United Kingdom between 2011 and 2016. Data were collected from patients at study entry and included patient demographics, Eastern Cooperative Oncology Group performance status (ECOG-PS), nutritional parameters (the percentage weight loss [%WL]), muscle parameters assessed using computed tomography images (skeletal muscle index and skeletal muscle attenuation), inflammatory markers (modified Glasgow Prognostic score [mGPS]), and QoL data (the European Organization for Research and Treatment Quality-of-Life Questionnaire C-30). The relation between clinical, nutritional, and inflammatory parameters with QoL was assessed using the Spearman rank correlation coefficient and multivariate binary logistic regression. Components of the European Organization for Research and Treatment Quality-of-Life Questionnaire C-30 (physical function, fatigue, and appetite loss) and summary QoL scores were mean-dichotomized for the logistic regression analyses.
Results: Data were available for 1027 patients (51% men; median age, 66 years). Gastrointestinal cancer was most prevalent (40%), followed by lung cancer (26%) and breast cancer (9%). Distant metastatic disease was present in 87% of patients. The %WL, ECOG-PS, and mGPS were significantly correlated with deteriorating QoL functional and symptom scales (all P < .001). On multivariate regression analysis, >10% WL (odds ratio [OR], 2.69; 95% CI, 1.63-4.42), an ECOG-PS of 3 or 4 (OR, 14.33; 95% CI, 6.76-30.37), and an mGPS of 2 (OR, 1.58; 95% CI, 1.09-2.29) were independently associated with poorer summary QoL scores. These parameters were also independently associated with poorer physical function, fatigue, and appetite loss (all P < .05). Low skeletal muscle attenuation was independently associated with poorer physical functioning (OR, 1.67; 95% CI, 1.09-2.56), but muscle parameters were not independently associated with fatigue, appetite loss, or QoL summary scores.
Conclusions: The current findings indicate that QoL is determined (at least in part) by WL, ECOG-PS, and the systemic inflammatory response in patients with advanced cancer. Identifying early predictors of poor QoL may allow the identification of patients who may benefit from early referral to palliative and supportive care, which has been shown to improve QoL.
Drawing upon transformative service research and social tourism literature, this paper explores the relationship between respite care and childhood illness. It focuses specifically upon the short break opportunities attached to respite care offered in children's hospices in the United Kingdom. Pathographies (illness narratives), shared by patients, siblings and family (n = 23), provide unique insights into ways in which each participate in respite care. Participation prompts inclusivity and normality. It offers a break from illness, and contributes to uplifting feelings of optimism, escapism and new beginnings. Conclusions drawn argue the need for healthcare policy to move beyond ‘Dying Well’ narratives into ones which celebrate ‘Living Well with Dying’. Tourism participation has much to offer such a progressive healthcare policy.
Frailty has recently emerged as a dominant concept against a backdrop of media and governmental narratives that frame the growing ageing population as an economic threat to the current configuration of health care in the United Kingdom (UK). Despite frailty's popularity amongst geriatricians and policy makers, the concept faces resistance from other health-care professionals and older people themselves. This paper draws on the Foucauldian idea of biopower; by suggesting that the contemporary emergence and utilisation of frailty represents a biopolitical practice a number or critical observations are made. First, despite biomedical experts acknowledging ambiguities in the definition of frailty, the concept is presented as a truth discourse. This is driven by the ability of frailty measurements to predict risk of costly adverse outcomes; the capability of frailty scores to enumerate complex needs; and the scientific legitimacy frailty affords to geriatric medicine. Consequently, frailty has become pervasive, knowable and measurable. Second, the routine delineation between frail and robust objectifies older people, and can be said to benefit those making the diagnosis over those being labelled frail, with the latter becoming disempowered. Last, studies show that frailty is associated with increasing wealth inequalities in the UK; however, experts’ suggested management of frailty shifts the focus of responsibility away from ideologically driven structural inequalities towards the frail older person, attempting to encourage individuals to modify lifestyle choices. This neglects the association between lifestyle opportunities and socio-economic deprivation, and the impact of long-term poverty on health. These observations, set against the contemporary political climate of economic austerity, cuts to public services and rationalisation of health resources, bring the urgency of a critical consideration of frailty to the fore.
AIM: To establish an understanding of the experiences of newly qualified nurses' working in hospices from the perspective of both newly qualified and senior nurses.
DESIGN: A qualitative interview study.
METHODS: Semi-structured interviews with six newly qualified nurses and five senior nurses from four United Kingdom hospices were conducted between March - July 2017.
RESULTS: The hospices involved in this study were among the first to recruit newly qualified nurses. Participants believed newly qualified nurses coped well with hospice working and received unique opportunities for professional development. Participants identified the value of formal and informal support however newly qualified nurses faced negative attitudes from some established staff. Newly qualified nurses expressed concerns about a perceived lack of technical clinical skills training however they highlighted gaining end-of-life care and communication skills that would be transferrable to other settings. Participants highlighted the need to allocate more time for education and formal support including preceptorship. Senior staff did not necessarily expect newly qualified nurses to remain in long-term hospice employment suggesting they could disseminate their hospice learning to future workplaces.
CONCLUSION: This study supports recruitment strategies that increasingly target newly qualified nurses to work in hospices with findings suggesting that hospices can be a suitable environment for recent graduates to work in. The senior nurses in this study viewed the employment of newly qualified nurses in a positive light but shared the concerns of newly qualified nurses regarding skills training.
IMPACT: At a time when hospices need to expand if they are going to meet demand for their services, they along with most areas of healthcare face difficulties recruiting and retaining registered nurses. To increase the appeal of hospice employment, recruitment campaigns aimed at newly qualified nurses should emphasise the transferability of skills gained in hospice settings.