Importance: Palliative care has shown benefits in reducing symptom intensity and quality of life in patients with advanced cancer. However, high-quality evidence to support palliative care policy and service developments for patients with long-term neurological conditions (LTNCs) is lacking.
Objective: To determine the effectiveness of a short-term integrated palliative care (SIPC) intervention for people with LTNCs.
Design, Setting, and Participants: Multicenter, phase 3, randomized clinical trial conducted from April 1, 2015, to November 30, 2017, with a last follow-up date of May 31, 2018, in 7 UK hospitals with both neurology and palliative care services. A total of 535 patients with LTNC were assessed for eligibility and 350 were randomized. Inclusion criteria were patients 18 years or older with any advanced stage of multiple sclerosis, motor neuron disease, idiopathic Parkinson disease multiple system atrophy, or progressive supranuclear palsy. Data were analyzed from November 2018 to March 2019.
Interventions: Patients were randomized 1:1 using minimization method to receive SIPC (intervention, n = 176) or standard care (control, n = 174).
Main Outcomes and Measures: Primary outcome was change in 8 key palliative care symptoms from baseline to 12-weeks, measured by the Integrated Palliative care Outcome Scale for neurological conditions. Secondary outcomes included change in the burden of other symptoms, health-related quality of life, caregiver burden, and costs. Data were collected and analyzed blindly by intention to treat.
Results: A total of 350 patients (mean [SD] age 67  years; years since diagnosis, 12 [range, 0-56]; 51% men; 49% requiring considerable assistance) with an advanced stage of LTNC were recruited, along with informal caregivers (n = 229). There were no between-group differences in primary outcome (effect size, -0.16; 95% CI, -0.37 to 0.05), any other patient-reported outcomes, adverse events, or survival. Although there was more symptom reduction in the SIPC group in relation to mean change in primary outcome, the difference between the groups was not statistically significant (-0.78; 95% CI, -1.29 to -0.26 vs -0.28; 95% CI, -0.82 to 0.26; P = .14). There was a decrease in mean health and social care costs from baseline to 12 weeks -$1367 (95% CI, -$2450 to -$282) in the SIPC group and -653 (95% CI, -$1839 to -$532) in the control group, but this difference was not statistically significant (P = .12). SIPC was perceived by patients and caregivers as building resilience, attending to function and deficits, and enabling caregivers.
Conclusions and Relevance: In this study, SIPC was not statistically significantly different from standard care for the patient-reported outcomes. However, SIPC was associated with lower cost, and in qualitative analysis was well-received by patients and caregivers, and there were no safety concerns. Further research is warranted.
Background: This retrospective cohort study aims to define the clinical findings and outcomes of every patient admitted to a district general hospital in Surrey with COVID-19 in March 2020, providing a snapshot of the first wave of infection in the UK. This study is the first detailed insight into the impact of frailty markers on patient outcomes and provides the infection rate among healthcare workers.
Methods: Data were obtained from medical records. Outcome measures were level of oxygen therapy, discharge and death. Patients were followed up until 21 April 2020.
Results: 108 patients were included. 34 (31%) died in hospital or were discharged for palliative care. 43% of patients aged over 65 died. The commonest comorbidities were hypertension (49; 45%) and diabetes (25; 23%). Patients who died were older (mean difference ±SEM, 13.76±3.12 years; p<0.0001) with a higher NEWS2 score (median 6, IQR 2.5–7.5 vs median 2, IQR 2–6) and worse renal function (median differences: urea 2.7 mmol/L, p<0.01; creatinine 4 µmol/L, p<0.05; eGFR 14 mL/min, p<0.05) on admission compared with survivors. Frailty markers were identified as risk factors for death. Clinical Frailty Scale (CFS) was higher in patients over 65 who died than in survivors (median 5, IQR 4–6 vs 3.5, IQR 2–5; p<0.01). Troponin and creatine kinase levels were higher in patients who died than in those who recovered (p<0.0001). Lymphopenia was common (median 0.8, IQR 0.6–1.2; p<0.005). Every patient with heart failure died (8). 26 (24%) were treated with continuous positive airway pressure (CPAP; median 3 days, IQR 2–7.3) and 9 (8%) were intubated (median 14 days, IQR 7–21). All patients who died after discharge (4; 6%) were care home residents. 276 of 699 hospital staff tested were positive for COVID-19.
Conclusions: This study identifies older patients with frailty as being particularly vulnerable and reinforces government policy to protect this group at all costs.
BACKGROUND: Chronic obstructive pulmonary disease is associated with an uncertain trajectory, which challenges prognostication and means that most patients are not involved in advance care planning and do not receive palliative and end-of-life care.
AIM: To understand the preferences of patients with chronic obstructive pulmonary disease for discussions about palliative and advance care planning with clinicians.
DESIGN: Semi-structured interviews were conducted with patients with chronic obstructive pulmonary disease. Data analysis was guided by principles of interpretative phenomenological analysis, of which symbolic interactionism and interpretation principles were employed throughout.
SETTING/PARTICIPANTS: A total of 33 British patients with chronic obstructive pulmonary disease at different stages of their disease trajectory were recruited.
RESULTS: Patients preferred to discuss palliative care with clinicians they perceived had greater levels of competency and authority in care and with whom they had an established relationship, usually a specialist. Patients favoured large amounts of information about treatments and care, but reported a lack of illness-related information and problems accessing appointments with clinicians. Consequently, patients deferred discussions to the future, usually once their condition had deteriorated significantly or planned to wait for clinicians to initiate conversations. This was not rooted in patient preferences, but related to clinicians' lack of time, absence of an established relationship and belief that appointments were for managing current symptoms, exacerbations and disease factors rather than future care and preferences.
CONCLUSION: Different perceptions, competing priorities and service rationing inhibit patients from initiating early discussions with clinicians, so palliative care conversations should be initiated by respiratory-expert clinicians who know the patient well. After a sudden deterioration in the patient's condition may be a suitable time.
BACKGROUND: End-of-life discussions are associated with improved quality of care for patients. In the UK, the General Medical Council outlines a requirement for medical graduates to involve patients and their families in discussions on their care at the end-of-life. However medical students feel ill-equipped to conduct these discussions.
METHODS: In 2018, Sheffield Medical School introduced a small group role-play session on end-of-life discussions for all final year medical students. Scenarios were devised to improve confidence in the following learning domains: communicating prognosis with patients and family; ascertaining patient's goals, values and preferred place of death; discussing escalation of treatment, discussing do not attempt resuscitation orders, care in the dying phase of illness and pre-emptive prescribing. Evaluation was conducted over 16 weeks with a before and after questionnaire. Students rated their confidence in the above learning domains on a Likert-style scale and explained their ratings in free-text boxes.
RESULTS: There was a 76% response rate to the questionnaire and analysis showed statistically significant improvements in confidence across all learning domains following the session. Qualitative analysis of free-text responses showed that prior to the sessions, students expressed low confidence due to lack of experience and fear of upsetting patients. After the session students felt they had gained skills but expressed persistent anxiety and a desire for further practice.
CONCLUSIONS: Our innovation suggests that the opportunity to experience end-of-life discussions through role-play can significantly improve students' confidence in conducting these conversations. However, repeated sessions are likely necessary for students to feel prepared upon graduation.
Background: the literature contains limited information on the problems faced by dying patients with COVID-19 and the effectiveness of interventions to manage these.
Aim: The aim of this audit was to assess the utility of our end-of-life care plan, and specifically the effectiveness of our standardised end-of-life care treatment algorithms, in dying patients with COVID-19.
Design: The audit primarily involved data extraction from the end-of-life care plan, which includes four hourly nursing (ward nurses) assessments of specific problems: patients with problems were managed according to standardised treatment algorithms, and the intervention was deemed to be effective if the problem was not present at subsequent assessments.
Setting/participants: This audit was undertaken at a general hospital in England, covered the 8 weeks from 16 March to 11 May 2020 and included all inpatients with COVID-19 who had an end-of-life care plan (and died).
Results: Sixty-one patients met the audit criteria: the commonest problem was shortness of breath (57.5%), which was generally controlled with conservative doses of morphine (10–20 mg/24 h via a syringe pump). Cough and audible respiratory secretions were relatively uncommon. The second most common problem was agitation/delirium (55.5%), which was generally controlled with standard pharmacological interventions. The cumulative number of patients with shortness of breath, agitation and audible respiratory secretions increased over the last 72 h of life, but most patients were symptom controlled at the point of death.
Conclusion: Patients dying of COVID-19 experience similar end-of-life problems to other groups of patients. Moreover, they generally respond to standard interventions for these end-of-life problems.
BACKGROUND: Palliative care services face challenges in adapting and responding to the COVID-19 pandemic. Understanding how palliative care needs and outcomes have changed during the pandemic compared to before the pandemic is crucial to inform service planning and research initiatives.
AIM: To evaluate the impact of COVID-19 on symptoms, clinical characteristics, and outcomes for patients referred to a hospital-based palliative care service in a district general hospital in London, UK.
DESIGN: A retrospective service evaluation. Data were extracted from the electronic patient records.
SETTING/PARTICIPANTS: The first 60 inpatients with confirmed COVID-19 infection, referred to the hospital palliative care service between 1 March 2020 and 23 April 2020, and another 60 inpatients, referred to the hospital palliative care service between 11 March 2019 and 23 April 2019, were included from a district general hospital in East London, UK.
RESULTS: Patients with COVID-19 have lower comorbidity scores, poorer performance status, and a shorter time from referral to death compared to patients without COVID-19. Breathlessness, drowsiness, agitation, and fever are the most prevalent symptoms during COVID-19 compared to pain and drowsiness pre-COVID-19. Time from admission to referral to palliative care is longer for Black, Asian and minority ethnic patients, especially during COVID-19.
CONCLUSION: Early referral to palliative care is essential in COVID-19, especially for Black, Asian and minority ethnic groups. There is urgent need to research why Black, Asian and minority ethnic patients are referred late; how palliative care services have changed; and possible solutions to setting up responsive, flexible, and integrated services.
Current debates about assisted dying and assisted suicide cover a series of medical, legal, moral, ethical and religious aspects. Yet, public views on the subject remain underexplored and, therefore, not always accounted for in the formation of public policy. This paper reports on empirical data from a cross-sectional study in the UK in 2019, which examines public views about the legalisation of assisted dying and assisted suicide, by means of a self-administered Qualtrics-based survey (self-devised vignettes). A combination of simple random and convenience sampling was used. Participants (n = 297) state their preference that both assisted dying and assisted suicide should be legalised in the UK (n = 70%), while doctors should be legally allowed to support such wishes of patients with an incurable and painful illness from which they will die (n = 62.22%). The paper concludes that public opinion needs to be further accounted for in policymaking and discourses regarding patient autonomy and dignity of care.
Background: Palliative Care Day Services (PCDS) offer supportive care to people with advanced, progressive illness who may be approaching the end of life. Despite the growth of PCDS in recent years, evidence of their costs and effects is scarce. It is important to establish the value of such services so that health and care decision-makers can make evidence-based resource allocation decisions. This study examines and estimates the costs and effects of PCDS with different service configurations in three centres across the UK in England, Scotland and Northern Ireland.
Methods: People who had been referred to PCDS were recruited between June 2017 and September 2018. A pragmatic before-and-after descriptive cohort study design analysed data on costs and outcomes. Data on costs were collected on health and care use in the 4 weeks preceding PCDS attendance using adapted versions of the Client Service Receipt Inventory (CSRI). Outcomes, cost per attendee/day and volunteer contribution to PCDS were also estimated. Outcomes included quality of life (MQOL-E), health status (EQ-5D-5L) and capability wellbeing (ICECAP-SCM).
Results: Thirty-eight attendees were recruited and provided data at baseline and 4 weeks (centre 1: n = 8; centre 2: n = 8, centre 3: n = 22). The cost per attendee/day ranged from £121–£190 (excluding volunteer contribution) to £172–£264 (including volunteer contribution) across the three sites. Volunteering constituted between 28 and 38% of the total cost of PCDS provision. There was no significant mean change at 4 week follow-up from baseline for health and care costs (centre 1: £570, centre 2: -£1127, centre 3: £65), or outcomes: MQOL-E (centre 1: - 0.48, centre 2: 0.01, centre 3: 0.24); EQ-5D-5L (centre 1: 0.05, centre 2: 0.03, centre 3: - 0.03) and ICECAP-SCM (centre 1:0.00, centre 2: - 0.01, centre 3: 0.03). Centre costs variation is almost double per attendee when attendance rates are held constant in scenario analysis.
Conclusions: This study highlights the contribution made by volunteers to PCDS provision. There is insufficient evidence on whether outcomes improved, or costs were reduced, in the three different service configurations for PCDS. We suggest how future research may overcome some of the challenges we encountered, to better address questions of cost-effectiveness in PCDS.
COVID-19 mortality disproportionally affects nursing homes, creating enormous pressures to deliver high-quality end-of-life care. Comprehensive palliative care should be an explicit part of both national and global COVID-19 response plans. Therefore, we aimed to identify, review, and compare national and international COVID-19 guidance for nursing homes concerning palliative care, issued by government bodies and professional associations. We performed a directed documentary and content analysis of newly developed or adapted COVID-19 guidance documents from across the world. Documents were collected via expert consultation and independently screened against prespecified eligibility criteria. We applied thematic analysis and narrative synthesis techniques. We identified 21 eligible documents covering both nursing homes and palliative care, from the World Health Organization (n = 3), and eight individual countries: U.S. (n = 7), The Netherlands (n = 2), Ireland (n = 1), U.K. (n = 3), Switzerland (n = 3), New Zealand (n = 1), and Belgium (n = 1). International documents focused primarily on infection prevention and control, including only a few sentences on palliative care-related topics. Palliative care themes most frequently mentioned across documents were end-of-life visits, advance care planning documentation, and clinical decision making toward the end of life (focusing on hospital transfers). There is a dearth of comprehensive international COVID-19 guidance on palliative care for nursing homes. Most have a limited focus both regarding breadth of topics and recommendations made. Key aspects of palliative care, that is, symptom management, staff education and support, referral to specialist services or hospice, and family support, need greater attention in future guidelines.
Background: Since a national lockdown was introduced across the UK in March, 2020, in response to the COVID-19 pandemic, cancer screening has been suspended, routine diagnostic work deferred, and only urgent symptomatic cases prioritised for diagnostic intervention. In this study, we estimated the impact of delays in diagnosis on cancer survival outcomes in four major tumour types.
Methods: In this national population-based modelling study, we used linked English National Health Service (NHS) cancer registration and hospital administrative datasets for patients aged 15–84 years, diagnosed with breast, colorectal, and oesophageal cancer between Jan 1, 2010, and Dec 31, 2010, with follow-up data until Dec 31, 2014, and diagnosed with lung cancer between Jan 1, 2012, and Dec 31, 2012, with follow-up data until Dec 31, 2015. We use a routes-to-diagnosis framework to estimate the impact of diagnostic delays over a 12-month period from the commencement of physical distancing measures, on March 16, 2020, up to 1, 3, and 5 years after diagnosis. To model the subsequent impact of diagnostic delays on survival, we reallocated patients who were on screening and routine referral pathways to urgent and emergency pathways that are associated with more advanced stage of disease at diagnosis. We considered three reallocation scenarios representing the best to worst case scenarios and reflect actual changes in the diagnostic pathway being seen in the NHS, as of March 16, 2020, and estimated the impact on net survival at 1, 3, and 5 years after diagnosis to calculate the additional deaths that can be attributed to cancer, and the total years of life lost (YLLs) compared with pre-pandemic data.
Findings: We collected data for 32 583 patients with breast cancer, 24 975 with colorectal cancer, 6744 with oesophageal cancer, and 29 305 with lung cancer. Across the three different scenarios, compared with pre-pandemic figures, we estimate a 7·9–9·6% increase in the number of deaths due to breast cancer up to year 5 after diagnosis, corresponding to between 281 (95% CI 266–295) and 344 (329–358) additional deaths. For colorectal cancer, we estimate 1445 (1392–1591) to 1563 (1534–1592) additional deaths, a 15·3–16·6% increase; for lung cancer, 1235 (1220–1254) to 1372 (1343–1401) additional deaths, a 4·8–5·3% increase; and for oesophageal cancer, 330 (324–335) to 342 (336–348) additional deaths, 5·8–6·0% increase up to 5 years after diagnosis. For these four tumour types, these data correspond with 3291–3621 additional deaths across the scenarios within 5 years. The total additional YLLs across these cancers is estimated to be 59 204–63 229 years.
Interpretation: Substantial increases in the number of avoidable cancer deaths in England are to be expected as a result of diagnostic delays due to the COVID-19 pandemic in the UK. Urgent policy interventions are necessary, particularly the need to manage the backlog within routine diagnostic services to mitigate the expected impact of the COVID-19 pandemic on patients with cancer.
BACKGROUND: People living with long-term neurological conditions (LTNC) often require palliative care. Rehabilitation medicine specialists often coordinate the long-term care of these patients.
OBJECTIVE: The aim of the present review was to undertake systematic literature searches to identify the evidence on palliative care for people with LTNC to guide rehabilitation medicine specialists caring for these patients in the UK.
METHODS: We searched for evidence for (1) discussion of end of life, (2) planning for end-of-life care, (3) brief specialist palliative care interventions, (4) support for family and carers, (5) training of rehabilitation medicine specialists in palliative care, and (6) commissioning of services. The databases searched were MEDLINE, EMBASE, CINAHL, PsycINFO, Cochrane Database of Systematic Reviews, Cochrane Central Register of Controlled Trials, Database of Abstracts of Reviews of Effects, NHS Economic Evaluation Database and Health Technology Assessment Database. Evidence was assimilated using a simplified version of the Grading of Recommendations Assessment, Development and Evaluation method.
RESULTS: We identified 2961 records through database searching for neurological conditions and 1261 additional records through database searches for specific symptoms. We removed duplicate records and conference presentations. We screened 3234 titles and identified 330 potentially relevant abstracts. After reading the abstracts we selected 34 studies for inclusion in the evidence synthesis.
CONCLUSIONS: From the evidence reviewed we would like to recommend that we move forward by establishing a closer working relationship with specialists in palliative care and rehabilitation medicine and explore the implications for cross-specialty training.
Background: The EORTC QLQ-C15-PAL is a shortened version of the widely used EORTC QLQ-C30. This questionnaire was developed to measure the symptoms and functional health of patients receiving palliative care.
Objective: To enhance clinical interpretability of the EORTC QLQ-C15-PAL, our aim was to evaluate the sensitivity and specificity of thresholds for clinical importance developed previously for the QLQ-C30 when applied to the QLQ-C15-PAL scales.
Design: Cross-sectional observational study.
Setting/Subjects: Patients with cancer receiving any type of palliative treatment.
Measurement: Patients completed the EORTC QLQ-C15-PAL and anchor items on limitations, worries, and need for help for each of the health domains covered by the questionnaire. The anchor items were summarized in a binary criterion for clinical importance to calculate the sensitivity and specificity of the thresholds for clinical importance.
Results: In total, 225 patients participated in the study (mean age 64.5 years). Patients were recruited from Austria, Italy, the Netherlands, Poland, Spain, and the United Kingdom. The thresholds for clinical importance for the QLQ-C15-PAL scales showed a median sensitivity of 0.88 (range: 0.82 for sleep disturbances to 1.00 for dyspnea) and a median specificity of 0.74 (range: 0.54 for dyspnea to 0.89 for constipation).
Conclusion: The thresholds for clinical importance showed high sensitivity and mostly high specificity in identifying clinically important symptoms and functional health impairments as assessed by the QLQ-C15-PAL. These thresholds will facilitate interpretation of EORTC QLQ-C15-PAL scores in daily clinical practice and clinical research.
Background: The COVID-19 pandemic has introduced further challenges into Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions. Existing evidence suggests success rates for CPR in COVID-19 patients is low and the risk to healthcare professionals from this aerosol-generating procedure complicates the benefit/harm balance of CPR.
Methods: The study is based at a large teaching hospital in the United Kingdom where all DNACPR decisions are documented on an electronic healthcare record (EHR). Data from all DNACPR/TEAL status forms between 1st January 2017 and 30th April 2020 were collected and analysed. We compared patterns of decision making and rates of form completion during the 2-month peak pandemic phase to an analogous period during 2019.
Results: A total of 16,007 forms were completed during the study period with a marked increase in form completion during the COVID-19 pandemic. Patients with a form completed were on average younger and had fewer co-morbidities during the COVID-19 period than in March-April 2019. Several questions on the DNACPR/TEAL forms were answered significantly differently with increases in patients being identified as suitable for CPR (23.8% versus 9.05%; p < 0.001) and full active treatment (30.5% versus 26.1%; p = 0.028). Whilst proportions of discussions that involved the patient remained similar during COVID-19 (95.8% versus 95.6%; p = 0.871), fewer discussions took place with relatives (50.6% versus 75.4%; p < 0.001).
Conclusion: During the COVID-19 pandemic, the emphasis on senior decision making and conversations around ceilings of treatment appears to have changed practice, with a higher proportion of patients having DNACPR/TEAL status documented. Understanding patient preferences around life-sustaining treatment versus comfort care is part of holistic practice and supports shared decision making. It is unclear whether these attitudinal changes will be sustained after COVID-19 admissions decrease.
BACKGROUND: Limited research has characterized team-based models of home palliative care and the outcomes of patients supported by these care teams.
CASE PRESENTATION: A retrospective case series describing care and outcomes of patients managed by the London Home Palliative Care Team between May 1, 2017 and April 1, 2019.
CASE MANAGEMENT: The London Home Palliative Care (LHPC) Team care model is based upon 3 pillars: 1) physician visit availability 2) active patient-centered care with strong physician in-home presence and 3) optimal administrative organization.
CASE OUTCOMES: In the 18 month study period, 354 patients received care from the London Home Palliative Care Team. Most significantly, 88.4% (n = 313) died in the community or at a designated palliative care unit after prearranged direct transfer; no comparable provincial data is available. 21.2% (n = 75) patients visited an emergency department and 24.6% (n = 87) were admitted to hospital at least once in their final 30 days of life. 280 (79.1%) died in the community. These values are better than comparable provincial estimates of 62.7%, 61.7%, and 24.0%, respectively.
CONCLUSION: The London Home Palliative Care (LHPC) Team model appears to favorably impact community death rate, ER visits and unplanned hospital admissions, as compared to accepted provincial data. Studies to determine if this model is reproducible could support palliative care teams achieving similar results.
BACKGROUND: The COVID-19 pandemic has placed unprecedented strain on health-care systems. Frailty is being used in clinical decision making for patients with COVID-19, yet the prevalence and effect of frailty in people with COVID-19 is not known. In the COVID-19 in Older PEople (COPE) study we aimed to establish the prevalence of frailty in patients with COVID-19 who were admitted to hospital and investigate its association with mortality and duration of hospital stay.
METHODS: This was an observational cohort study conducted at ten hospitals in the UK and one in Italy. All adults ((=18 years) admitted to participating hospitals with COVID-19 were included. Patients with incomplete hospital records were excluded. The study analysed routinely generated hospital data for patients with COVID-19. Frailty was assessed by specialist COVID-19 teams using the clinical frailty scale (CFS) and patients were grouped according to their score (1-2=fit; 3-4=vulnerable, but not frail; 5-6=initial signs of frailty but with some degree of independence; and 7-9=severe or very severe frailty). The primary outcome was in-hospital mortality (time from hospital admission to mortality and day-7 mortality).
FINDINGS: Between Feb 27, and April 28, 2020, we enrolled 1564 patients with COVID-19. The median age was 74 years (IQR 61-83); 903 (57·7%) were men and 661 (42·3%) were women; 425 (27·2%) had died at data cutoff (April 28, 2020). 772 (49·4%) were classed as frail (CFS 5-8) and 27 (1·7%) were classed as terminally ill (CFS 9). Compared with CFS 1-2, the adjusted hazard ratios for time from hospital admission to death were 1·55 (95% CI 1·00-2·41) for CFS 3-4, 1·83 (1·15-2·91) for CFS 5-6, and 2·39 (1·50-3·81) for CFS 7-9, and adjusted odds ratios for day-7 mortality were 1·22 (95% CI 0·63-2·38) for CFS 3-4, 1·62 (0·81-3·26) for CFS 5-6, and 3·12 (1·56-6·24) for CFS 7-9.
INTERPRETATION: In a large population of patients admitted to hospital with COVID-19, disease outcomes were better predicted by frailty than either age or comorbidity. Our results support the use of CFS to inform decision making about medical care in adult patients admitted to hospital with COVID-19.
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.