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.
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.
Background: Few large studies describe initial disease trajectories and subsequent mortality in people with head and neck cancer. This is a necessary first step to identify the need for palliative care and associated services.
Aim: To analyse data from the Head and Neck 5000 study to present mortality, place and mode of death within 12 months of diagnosis.
Design: Prospective cohort study.
Participants: In total, 5402 people with a new diagnosis of head and neck cancer were recruited from 76 cancer centres in the United Kingdom between April 2011 and December 2014.
Results: Initially, 161/5402 (3%) and 5241/5402 (97%) of participants were treated with ‘non-curative’ and ‘curative’ intent, respectively. Within 12 months, 109/161 (68%) in the ‘non-curative’ group died compared with 482/5241 (9%) in the ‘curative’ group. Catastrophic bleed was the terminal event for 10.4% and 9.8% of people in ‘non-curative’ and ‘curative’ groups, respectively; terminal airway obstruction was recorded for 7.5% and 6.3% of people in the same corresponding groups. Similar proportions of people in both groups died in a hospice (22.9% ‘non-curative’; 23.5% ‘curative’) and 45.7% of the ‘curative’ group died in hospital.
Conclusion: In addition to those with incurable head and neck cancer, there is a small but significant ‘curative’ subgroup of people who may have palliative needs shortly following diagnosis. Given the high mortality, risk of acute catastrophic event and frequent hospital death, clarifying the level and timing of palliative care services engagement would help provide assurance as to whether palliative care needs are being met.
BACKGROUND: Annually, across the world a substantial number of dependent children experience the death of a parent through life-limiting illness. Without support, this has long-term implications for children's emotional, social and physical well-being, impacting on health and social care services globally. Limited information exists on how service providers are meeting family needs when a parent with dependent children is dying.
AIM: To determine the bereavement support provided to families with dependent children by UK hospices before and after a parent's death.
DESIGN: A 23-item, cross-sectional, web-based survey of adult UK hospices. Closed and open-ended questions were asked about the features of support provided; open-ended response was sought to a question about the challenges faced by hospices in delivering support. Descriptive and non-parametric statistics and framework analysis were used to analyse the data.
RESULTS: 197 hospices were invited to participate. Response rate was 66% (130/197). More types of support were provided after, than before, parental death (mean 6.36/5.64, z=-5.767, p<0001). Twenty-two per cent of hospices reported no formal processes for asking or documenting the presence of dependent children. Volunteers were an underused resource before parental death. Four themes characterised challenges in delivering support for families: emotional difficulties for families; practical and social difficulties for families; funding/resources; and staff training/numbers.
CONCLUSIONS: Family needs are not consistently being met when a parent is dying. Areas for development include: enhanced systems to record when patients have dependent children; flexible approaches to support vulnerable families; staff training to help communication with families and management of their own fears of making the situation worse. Effective educational interventions and service developments to better support staff, parents and children are needed.
This paper is aimed at focusing on the writings and the experience of the Hospice movement Founder, Dame Cicely Saunders. The in-depth analysis carried out had the objective of verifying if "the way" of Cicely to understand, live and propose palliative care was still current and "beautiful", so that we can nowadays refer to her fascinating "Original Palliative Care". With "beauty" we mean, on the one hand, a way able to allow a personal path of research of the meaning of the disease and of the care, both for those who care and for those who are cared for. On the other hand, it seems to us that Cicely strongly suggests how this path can not be carried out alone, but is only possible within the context of a network of relationships and support, in a so called "relational autonomy", for the patient, included in a "care ethics". The authors believe that the work extensively documents as the overall approach of Cicely, traditional but always to be rediscovered, is still today the most convincing way of conception and action of palliative care.
BACKGROUND: Illness and death are part of life for everyone, including people with intellectual disabilities. This study investigated the extent to which staff communicate about death with people with intellectual disability facing terminal illness or bereavement.
METHOD: Staff who support people with intellectual disability in the UK (n = 690) completed an electronic survey. Detailed data were obtained from staff where a client had died in the past 12 months (n = 111), was terminally ill (n = 41) or had been bereaved (n = 200). Analysis included descriptive and chi-squared statistics.
RESULTS: 52.6% of people with intellectual disability who were terminally ill were told about their illness, and 18.1% were told they would die. Of those experiencing an anticipated bereavement, 32.4% of staff said no one talked about this with them beforehand. A quarter of staff had received training on end of life or bereavement.
CONCLUSION: Death affects many people with intellectual disability. Staff require training and support in communicating death.
The Royal College of General Practitioners (RCGP) will continue to oppose a change in the law on assisted dying, having conducted a survey of its members.
The decision was ratified by the college’s governing council on 21 February. The RCGP said that 6674 members responded to its survey on assisted dying, a 13.47% response rate.
Of those who responded, 47% (3144) said that the RCGP should oppose a change in the law on assisted dying. A further 40% of respondents (2684) said that the RCGP should support a change in the law on assisted dying provided a regulatory framework and appropriate safeguarding processes are in place, 11% (701) said that the college should have a neutral position, and 2% (145) abstained.
BACKGROUND: Evaluations of complex interventions compared to usual care provided in palliative care are increasing. Not describing usual care may affect the interpretation of an intervention's effectiveness, yet how it can be described remains unclear.
AIM: To demonstrate the feasibility of using multi-methods to describe usual care provided in randomised controlled trials (RCTs) of complex interventions, shown within a feasibility cluster RCT.
DESIGN: Multi-method approach comprising usual care questionnaires, baseline case note review and focus groups with ward staff completed at study end. Thematic analysis of qualitative data, descriptive statistics of quantitative data, followed by methodological triangulation to appraise approach in relation to study aim.
SETTING/PARTICIPANTS: Four general medical wards chosen from UK hospitals. Purposive sampling of healthcare professionals for usual care questionnaires, and focus groups. Review of 20 patients’ notes from each ward who died during admission or within 100 days of discharge.
RESULTS: Twenty-three usual care questionnaires at baseline, two focus groups comprising 20 healthcare professionals and 80 case note reviews. Triangulation of findings resulted in understanding the usual care provided to the targeted population in terms of context, structures, processes and outcomes for patients, families and healthcare professionals. Usual care was described, highlighting (1) similarities and embedded practices, (2) heterogeneity and (3) subtle changes in care during the trial within and across sites.
CONCLUSIONS: We provide a feasible approach to defining usual care that can be practically adopted in different settings. Understanding usual care enhances the reliability of tested complex interventions, and informs research and policy priorities.
For the first time, the BMA is asking its members what position it should take on assisted dying. The results of the survey will be made available to BMA members ahead of this year’s annual representative meeting (ARM) in June. They will inform a debate and a vote at the meeting regarding the BMA’s policy position.
Since 2006 the BMA has opposed assisted dying in all forms. Its policy says that neither physician assisted suicide nor voluntary euthanasia should be made legal in the UK. In 2016, representatives at the association’s ARM rejected a motion calling on the BMA to adopt a neutral position.
With an increasing aging population worldwide, there is a growing need for both palliative care and geriatric medicine. It is presumed in medical literature that both specialties share similar goals about patient care and could collaborate. To inform future service development, the objective of this review was to identify what is currently empirically known about overlapping working practices. This article provides a scoping literature review on the relationship between geriatric medicine and palliative care within the United Kingdom. The review encompassed literature written between 1997 and 2019 accessed via Scopus, Web of Science, PubMed, and Google Scholar. Three themes were identified: (a) unclear boundaries between specialties, (b) communication within and between specialisms, and (c) ambiguity of how older people fit in the current health care system. We suggest that more empirical research is conducted about the overlap between palliative care and geriatric medicine to understand how interprofessional working and patient care can be improved.
Purpose: Physical activity (PA) is increasingly being used in hospice care as a rehabilitation strategy to help patients manage symptoms and improve quality of life. However, little is known about how to design and deliver interventions that promote uptake and maintenance of PA in this population. Single-level approaches (i.e., psychological models) have primarily been used to study factors that influence PA engagement among patients with advanced, incurable disease and therefore offer a limited perspective on strategies that target changes beyond the individual level. This study explored perspectives on factors perceived important for influencing PA participation in hospice care using a social-ecological framework.
Method: Patients (n = 27) and health providers (n = 5) from multiple hospices (n = 5) across the UK were involved in this study. Data were collected using focus group and individual semi-structured interviews and analyzed using a thematic framework approach.
Results: Eight main themes were perceived to be important for influencing PA engagement at the individual, interpersonal, physical environment, community, and policy levels including: (1) PA as therapy; (2) apprehension about PA-induced harm; (3) group-based PA with peers; (4) supervised PA sessions; (5) limited facilities and access; (6) patient-centered approach; (7) lack of a strong PA culture and; (8) absence of a policy and guidance for PA provision.
onclusion: Hospice-based PA interventions that target multiple levels simultaneously may be more effective at successfully changing and sustaining patients' PA behavior. Study findings provide evidence-based recommendations that may facilitate the effective delivery of PA interventions in hospice care.
Objectives: While guidelines recommend palliative care in non-cancer conditions, this has not been widely implemented. We examined whether the recording of a palliative care approach and the numbers of hospital deaths for deceased patients with heart failure, dementia, chronic obstructive pulmonary disease (COPD) and cancer have changed since the UK End-of-Life Care Strategy was introduced.
Methods: We conducted sequential cross-sectional studies of decedents within the UK’s Clinical Practice Research Datalink and Hospital Episode Statistics. All adults with a primary care record of COPD (n=5426), dementia (n=7339), heart failure (n=6409) or cancer (n=18 668) who died during three 1 year periods (April 2009 to March 2014) were included. Evidence of a palliative care approach was identified from primary care records, and death in hospital from secondary care data.
Results: From 2009 to 2014, proportions with a primary care record of palliative care increased for COPD from 13.6% to 21.2%; dementia from 20.9% to 40.7%; and heart failure from 12.6% to 21.2%; but remained substantially lower than for cancer (57.6% to 61.9%). Median days before death of recording improved for COPD (145 to 224) and dementia (44 to 209); but not for heart failure (168.5 to 153) and cancer (123 to 114). Trends in hospital deaths were not consistently downward, although the proportions of patients dying in hospital were lower in the last period compared with the first.
Conclusions: Recording of a palliative care approach for non-cancer conditions has increased since the introduction of the UK End-of-Life Care Strategy, but remains inadequate.