In the UK and the Westernised countries, most people die aged 80+ from disabling, chronic and degenerative diseases, having spent several years in poor health. There is thus continuity between long-term care (LTC) and end of life care (EOLC) in old age, but this continuity is poorly understood within policy and almost nothing is known about what determines the modality and intensity of LTC provision in old age towards the end of life. Drawing on multinomial logistic regression analysis of the English Longitudinal Study of Ageing (ELSA), this paper evaluates how health and socio-demographic factors affect the relative probability of receiving care through one of five long-term care arrangements (LTCAs) from the time of need at age =50 to death; and assesses the consequences this has for the English LTC and EOLC policy and planning. The study reveals that hospices provide end-of-life LTC for cancer diagnoses and adults aged 50-64, while care homes provide open-ended and end-of-life LTC for non-cancer diagnoses, dementia, severe disability, and adults aged 80+. Further, the informal, formal, mixed and care home LTCAs reflect increasing levels of disability and ill-health, and decreasing levels of family support, with differences concerning education and gender. Finally, dementia and Parkinson's disease are the single strongest determinants of high formal LTC provision, and overall high care needs determine high formal LTC provision. Within the English context, the consequences of this are that: 1) Continued reliance on informal family care is not sustainable; 2) To provide free formal LTC to old adults with high care needs is appropriate; and 3) Hospices do not cater for the prevalent form of dying in old age while care homes do, being the de facto hospices for severely disabled, very old (80+) adults with dementia. Yet this is not represented in English EOLC policy and research.
BACKGROUND: Evaluation of palliative care services is crucial in order to ensure high quality care and to plan future services in light of growing demand. There is also an acknowledgement of the need to better understand patient experiences as part of the paradigm shift from paternalistic professional and passive patient to a more collaborative partnership. However, while clinical decision-making is well-developed, the science of the delivery of care is relatively novel for most clinicians. We therefore introduce the Trajectory Touchpoint Technique (TTT), a systematic methodology designed using service delivery models and theories, for capturing the voices of palliative care service users.
METHODS: We used design science research as our overarching methodology to build our Trajectory Touchpoint Technique. We also incorporated a range of kernel theories and service design models from the wider social sciences. We developed and tested our Trajectory Touchpoint Technique with palliative care patients and their families (n = 239) in collaboration with different hospices and hospital-based palliative care providers (n = 8).
RESULTS: The Trajectory Touchpoint Technique is user-friendly, enables systematic data collection and analysis, and incorporates all tangible and intangible dimensions of palliative care important to the service user. These dimensions often go beyond clinical care to encompass wider aspects that are important to the people who use the service. Our collaborating organisations have already begun to make changes to their service delivery based on our results.
CONCLUSIONS: The Trajectory Touchpoint Technique overcomes several limitations of other palliative care evaluation methods, while being more comprehensive. The new technique incorporates physical, psychosocial, and spiritual aspects of palliative care, and is user-friendly for inpatients, outpatients, families, and the bereaved. The new technique has been tested with people who have a range of illnesses, in a variety of locations, among people with learning disabilities and low levels of literacy, and with children as well as adults. The Trajectory Touchpoint Technique has already uncovered many previously unrecognised opportunities for service improvement, demonstrating its ability to shape palliative care services to better meet the needs of patients and their families.
AIM: To develop an understanding of how nurses provide spiritual care to terminally ill patients in order to develop best practice.
BACKGROUND: Patients approaching the end of life (EoL) can experience suffering physically, emotionally, socially and spiritually. Nurses are responsible for assessing these needs and providing holistic care, yet are given little implementable, evidence-based guidance regarding spiritual care. Nurses internationally continue to express inadequacy in assessing and addressing the spiritual domain, resulting in spiritual care being neglected or relegated to the pastoral team.
DESIGN: Systematic literature review, following PRISMA guidelines.
METHODS: Nineteen electronic databases were systematically searched and papers screened. Quality was appraised using the Critical Appraisal Skills Programme qualitative checklist, and deductive thematic analysis, with a priori themes, was conducted.
RESULTS: Eleven studies provided a tripartite understanding of spiritual caregiving within the a priori themes: Nursing Spirit (a spiritual holistic ethos); the Soul of Care (the nurse-patient relationship) and the Body of Care (nurse care delivery). Ten of the studies involved palliative care nurses.
CONCLUSION: Nurses who provide spiritual care operate from an integrated holistic worldview, which develops from personal spirituality, life experience and professional practice of working with the dying. This worldview, when combined with advanced communication skills, shapes a relational way of spiritual caregiving that extends warmth, love and acceptance, thus enabling a patient's spiritual needs to surface and be resolved.
RELEVANCE TO CLINICAL PRACTICE: Quality spiritual caregiving requires time for nurses to develop: the personal, spiritual and professional skills that enable spiritual needs to be identified and redressed; nurse-patient relationships that allow patients to disclose and co-process these needs. Supportive work environments underpin such care. Further research is required to define spiritual care across all settings, outside of hospice, and to develop guidance for those involved in EoL care delivery.
Conflict is an important consideration in the intensive care unit (ICU). In this setting, conflict most commonly occurs over the 'best interests' of the incapacitated adult patient; for instance, when families seek aggressive life-sustaining treatments, which are thought by the medical team to be potentially inappropriate. Indeed, indecision on futility of treatment and the initiation of end-of-life discussions are recognised to be among the greatest challenges of working in the ICU, leading to emotional and psychological 'burnout' in ICU teams. When these disagreements occur, they may be within the clinical team or among those close to the patient, or between the clinical team and those close to the patient. It is, therefore, crucial to have a theoretical understanding of decision-making itself, as unpicking misalignments in the family's and clinical team's decision-making processes may offer strategies to resolve conflict. Here, we relate Kahneman and Tversky's work on cognitive biases and behavioural economics to the ICU environment, arguing that these biases could partly explain disparities in the decision-making processes for the two conflicting parties. We suggest that through the establishment of common ground, challenging of cognitive biases and formulation of mutually agreeable solutions, mediation may offer a pragmatic and cost-effective solution to conflict resolution. The litigation process is intrinsically adversarial and strains the doctor-patient-relative relationship. Thus an alternative external party should be considered, however mediation is not frequently used and more research is needed into its effectiveness in resolving conflicts in the ICU.
BACKGROUND: Approximately 460 000 people die annually in England. Three-quarters of these deaths are expected. Health Education England is prioritising upskilling of clinical staff in response to reports of poor care quality in the last days of life in acute hospitals, where almost half of all deaths occur. This study explores the impact of an end-of-life care (EoLC) educational intervention, Milestones, in acute hospital trusts in Greater London.
METHODS: This is a mixed methods study. Learners completed a questionnaire pre- (n=452), immediately post- (n=488) and 3 to 8 months post- (n=37) intervention. The questionnaire measured learner confidence in EoLC covering the National Health Service adopted 'Priorities for the Care of the Dying Person'. Paired t-tests were used to determine statistically significant difference in learner confidence pre- and post-intervention. A convenience sample of learners (n=7) and educators (n=5) were recruited to qualitative semi-structured interviews that sought to understand if, how and why Milestones worked. Data were analysed using a thematic approach.
RESULTS: A statistically significant increase in learner confidence across all five priorities of care' was sustained up to 8 months (p<0.001). Interviewees wanted to discuss wider challenges in EoLC related to the organisations and cultural contexts in which they worked. Concerns included balancing hope when decision-making, learning as a multidisciplinary team and emotional impact.
CONCLUSION: The findings suggest that Milestones is a flexible, beneficial resource for teaching EoLC that facilitates enhanced learner engagement. Understanding generated about wider concerns can inform future educational material development, organisational process and research study design.
OBJECTIVE: The concept of a good death is a motivating factor for end of life care policy; this article examines what English end-of-life care (EOLC) policy defines as a good death.
METHODS: Critical discourse analysis of policy documents and policy-promoting materials published between 2008 and 2016.
RESULTS: Policy explicitly defines a good death as having the following attributes: being treated as an individual, with dignity and respect; being without pain and other symptoms; being in familiar surroundings and being in the company of close family and/or friends. Critical discourse analysis of 54 documents found that rather than just being an outcome or event, descriptions of what makes a death good also include many processes. A more extended definition includes: the person receives holistic EOLC; the dying person is treated with dignity and respect; the death is not sudden and unexpected; people are prepared and have ideally done some advance care planning; people are aware that someone is dying and openly discuss this; on knowing the dying person's preferences, all involved are to work towards achieving these; the place of death is important; the person's family are involved and the needs of the bereaved are considered.
CONCLUSION: This analysis indicates the complex nature of the current discourses around good death in EOLC policy, which often focuses on care rather than death. Policy should focus on outlining what quality end-of-life care looks like, rather than assume 'good death' is a suitable outcome statement.
BACKGROUND: General Practitioners (GPs) face challenges when providing palliative care, including an ageing, multimorbid population, and falling GP numbers. A 'public health palliative care' approach, defined as "working with communities to improve people's experience of death, dying and bereavement", is gaining momentum. 'Compassionate communities' is one example, with a focus on linking professional health carers with supportive community networks. Primary care is central to the approach, which has been incorporated into United Kingdom GP palliative care guidance. No research to date, however, has investigated GP perspectives of these approaches. Our aim, therefore, was to explore GP perceptions of a public health approach to palliative care, and compassionate communities.
METHODS: GPs working in the United Kingdom were recruited through university teaching and research networks using snowball sampling. Purposive sampling ensured wide representation of gender, level of experience and practice populations. Semi-structured, digitally audio-recorded interviews were conducted with nine GPs. Interviews were transcribed verbatim, and thematic analysis was undertaken, informed by a qualitative descriptive methodology. Interviews continued until data saturation was reached.
RESULTS: Most participants were unfamiliar with the term 'compassionate communities', but recognised examples within their practice. Three major themes with seven subthemes were identified: 1) Perceived potential of compassionate communities, including: 'maximising use of existing community services'; 'influencing health outside of healthcare'; and 'combatting taboo', 2) Perceived challenges of compassionate communities, including: 'patient safety'; 'limited capacity of the community'; 'limited capacity of general practice', and 'applicability of public health to palliative care', and 3) The role of the GP in compassionate communities.
CONCLUSIONS: GPs recognised the importance of the wider community in caring for palliative care patients, however most were unfamiliar with the compassionate community approach. Participants held differing views regarding the application of the model, and the position of general practice within this. Further research into the approach's practical implementation, and exploring the views of other key stakeholders, would help establish the feasibility of compassionate communities in practice, and guide its future application.
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.
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 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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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.