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Enhanced supportive care is a care model providing earlier access to multiprofessional, coordinated care for patients from the point of cancer diagnosis. As a proactive model of care, it stands as a contrast to providing access to a multidisciplinary team once a patient has hit a crisis point, or when their prognosis has become sufficiently poor that they are able to access traditional end-of-life services. Its arrival in the UK through palliative care teams working in cancer care has led to enhanced supportive care being synonymous with early palliative care. While enhanced supportive care has enabled early palliative care, as it has become more embedded in the UK, it has taken on a wider remit for patients living longer with cancer and the management of side effects. Enhanced supportive care services have also begun to provide care for cancer survivors. Enhanced supportive care services have a key role in modern cancer care in maintaining and improving patients' quality of life alongside cancer treatment and ensuring that patients' priorities and preferences for treatment are considered. Furthermore, enhanced supportive care has been shown to support the wider healthcare system by creating capacity within the NHS, reducing demand on hospital services and saving money. As enhanced supportive care services continue to grow and venture into the care and support of cancer survivors and those receiving potentially curative treatments, ongoing work is needed to determine how these services can be made available throughout the NHS and how a shared vision of the way enhanced supportive care operates can be realised.
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Neoplasias , Assistência Terminal , Humanos , Qualidade de Vida , Cuidados Paliativos , Neoplasias/terapia , Atenção à SaúdeRESUMO
BACKGROUND: Advance care planning (ACP) was encouraged by policymakers throughout the COVID-19 pandemic. Little is known about use of ACP during this time. AIM: To compare use of ACP before and during the COVID-19 pandemic. DESIGN & SETTING: Retrospective, observational cohort study, comparing the creation, use and content of Electronic Palliative Care Co-ordination System records in London. Individuals aged 18+ with a Coordinate My Care Record, created and published in the pre-pandemic period (01/01/2018-31/12/2019), Wave1 (W1) (20/03/2020-04/07/2020), and Wave2 (W2) (01/10/2020-05/03/2021). METHOD: Patient demographics and components of ACP were compared using descriptive and comparative statistics. RESULTS: 73,675 records were included; 35,108 pre-pandemic, 21,235 W1, 9,925 W2. Most records were created in primary care (56% pre-COVID, 76% in W1 and 48% in W2).Compared to the pre-pandemic period, the average weekly number of records created increased by 297% W1 (P<0.005) and 29.1% W2 (P<0.005). Patients with records created during the pandemic were younger (61% aged 80+ W1, 59% W2, 65% pre-pandemic (P<0.005)). Patients with records created in W1 had longer estimated prognoses at record creation (73% had an estimated prognosis of 1 year+ W1 vs 53% pre-pandemic (P<0.005)) and were more likely to be "For Resuscitation" (38% W1 vs 30% pre-pandemic (P<0.005)). CONCLUSION: During the COVID-19 pandemic, increased ACP activity was observed, especially in primary care, and for younger people and those not imminently dying. Further research is needed to identify training and planning requirements as well as organisational and system changes to support sustained high-quality ACP within primary care.
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BACKGROUND: People living with severe mental illness (SMI) face significant health inequalities, including in palliative care. Advance Care Planning (ACP) is widely recommended by palliative care experts and could reduce inequalities. However, implementing ACP with this group is challenging. Electronic Palliative Care Coordination Systems such as Coordinate my Care (CMC) have been introduced to support documentation and sharing of ACP records with relevant healthcare providers. This study explores the use of CMC amongst those with SMI and aims to describe how those with a primary diagnosis of SMI who have used CMC for ACP, and makes recommendations for future research and policy. METHOD: A retrospective observational cohort analysis was completed of CMC records created 01/01/2010-31/09/2021 where the service user had a primary diagnosis of SMI, with no exclusions based on comorbidities. Descriptive statistics were used to report on characteristics including: age, diagnosis, individual prognosis and resuscitation status. Thematic analysis was used to report on the content of patients' statements of preference. RESULTS: 1826 records were identified. Of this sample most (60.1%) had capacity to make treatment decisions, 47.8% were aged under 70, 86.7% were given a prognosis of 'years' and most (63.1%) remained for full cardio-pulmonary resuscitation in the event of cardio-pulmonary arrest. Records with completed statements of preferences (20.3%) contained information about preferences for physical and mental health treatment care as well as information about patient presentation and capacity, although most were brief and lacked expression of patient voice. DISCUSSION: Compared to usual CMC users, the cohort of interest are relatively able, younger people using CMC to make long-term plans for active physical and mental health treatment. ADM is a service user-driven process, and so it was expected that authentic patient voice would be expressed within statements of preference, however this was mostly not achieved. CONCLUSIONS: This digital tool is being used by people with SMI but to plan for more than palliative care. This cohort and supporting professionals have used CMC to plan for longer term physical and mental healthcare. Future research and policy should focus on development of tailored digital tools for people with SMI to plan for palliative, physical and mental healthcare and support expression of patient voice.
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Planejamento Antecipado de Cuidados , Transtornos Mentais , Humanos , Idoso , Cuidados Paliativos , Estudos Retrospectivos , Transtornos Mentais/terapia , Atenção à SaúdeRESUMO
Increased advance care planning was endorsed at the start of the Coronavirus disease 2019 (COVID-19) pandemic with the aim of optimizing end-of-life care. This retrospective observational cohort study explores the impact of advanced care planning on place of death. 21,962 records from patients who died during the first year of the pandemic and who had an Electronic Palliative Care Coordination System record were included. 11,913 (54%) had a documented place of death. Of these 5,339 died at home and 2,378 died in hospital. 9,971 (45%) had both a documented place of death and a preferred place of death. Of these, 7,668 (77%) died in their preferred location. Documented elements of advance care planning, such as resuscitation status and ceiling of treatment decisions, were associated with an increased likelihood of dying in the preferred location, as were the number of times the record was viewed. During the COVID-19 pandemic, advanced care planning and the use of digital care coordination systems presented an opportunity for patients and healthcare staff to personalize care and influence end-of-life experiences.
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Background: Approximately thirty thousand people in Scotland are diagnosed with cancer annually, of whom a third live less than one year. The timing, nature and value of hospital-based healthcare for patients with advanced cancer are not well understood. The study's aim was to describe the timing and nature of hospital-based healthcare use and associated costs in the last year of life for patients with a cancer diagnosis. Methods: We undertook a Scottish population-wide administrative data linkage study of hospital-based healthcare use for individuals with a cancer diagnosis, who died aged 60 and over between 2012 and 2017. Hospital admissions and length of stay (LOS), as well as the number and nature of outpatient and day case appointments were analysed. Generalised linear models were used to adjust costs for age, gender, socioeconomic deprivation status, rural-urban (RU) status and comorbidity. Results: The study included 85,732 decedents with a cancer diagnosis. For 64,553 (75.3%) of them, cancer was the primary cause of death. Mean age at death was 80.01 (SD 8.15) years. The mean number of inpatient stays in the last year of life was 5.88 (SD 5.68), with a mean LOS of 7 days. Admission rates rose sharply in the last month of life. One year adjusted and unadjusted costs decreased with increasing age. A higher comorbidity burden was associated with higher costs. Major cost differences were present between cancer types. Conclusions: People in Scotland in their last year of life with cancer are high users of secondary care. Hospitalisation accounts for a high proportion of costs, particularly in the last month of life. Further research is needed to examine triggers for hospitalisations and to identify influenceable reasons for unwarranted variation in hospital use among different cancer cohorts.
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Multimorbidade , Neoplasias , Humanos , Pessoa de Meia-Idade , Idoso , Idoso de 80 Anos ou mais , Custos Hospitalares , Neoplasias/epidemiologia , Hospitalização , MorteRESUMO
OBJECTIVES: There have been many models of providing oncology and palliative care to hospitals. Many patients will use the hospital non-electively or semielectively, and a large proportion are likely to be in the last years of life. We describe our multidisciplinary service to treatable but not curable cancer patients at University Hospitals Sussex. The team was a mixture of clinical nurse specialists and a clinical fellow supported by dedicated palliative medicine consultant time and oncology expertise. METHODS: We identified patients with cancer who had identifiable supportive care needs and record activity with clinical coding. We used a baseline 2019/2020 dataset of national (secondary uses service) data with discharge code 79 (patients who died during that year) to compare a dataset of patients seen by the service between September 2020 and September 2021 in order to compare outcomes. While this was during COVID-19 this was when the funding was available. RESULTS: We demonstrated a reduction in length of stay by an average of 1.43 days per admission and a reduction of 0.95 episodes of readmission rates. However, the costs of those admissions were found to be marginally higher. Even with the costs of the service, there is a clear return on investment with a benefit cost ratio of 1.4. CONCLUSIONS: A supportive oncology service alongside or allied to acute oncology but in conjunction with palliative care is feasible and cost-effective. This would support investment in such a service and should be nationally commissioned in conjunction with palliative care services seeing all conditions.
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BACKGROUND: Delivering high-quality palliative and end-of-life care for cancer patients poses major challenges for health services. We examine the intensity of cancer care in England in the last year of life. METHODS: We included cancer decedents aged 65+ who died between January 1, 2010 and December 31, 2017. We analysed healthcare utilisation and costs in the last 12 months of life including hospital-based activities and primary care. RESULTS: Healthcare utilisation and costs increased sharply in the last month of life. Hospital costs were the largest cost elements and decreased with age (0.78, 95% CI: 0.73-0.72, p < 0.005 for age group 90+ compared to age 65-69 and increased substantially with comorbidity burden (2.2, 95% CI: 2.09-2.26, p < 0.005 for those with 7+ comorbidities compared to those with 1-3 comorbidities). The costs were highest for haematological cancers (1.45, 95% CI: 1.38-1.52, p < 0.005) and those living in the London region (1.10, 95% CI: 1.02-1.19, p < 0.005). CONCLUSIONS: Healthcare in the last year of life for advanced cancer patients is costly and offers unclear value to patients and the healthcare system. Further research is needed to understand distinct cancer populations' pathways and experiences before recommendations can be made about the most appropriate models of care.
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Neoplasias , Assistência Terminal , Humanos , Recém-Nascido , Armazenamento e Recuperação da Informação , Neoplasias/terapia , Cuidados Paliativos , Estudos RetrospectivosRESUMO
Despite a wealth of research regarding COVID-19, little evidence exists about cancer patients' specific needs and experiences at end-of-life. This study retrospectively describes the care of 34 hospitalised cancer patients dying with COVID-19. The palliative care needs of patients were described. The main domains of end-of-life care service provision were evaluated including treatment of pain and other symptoms, communication and decision making at end-of-life and level of involvement of the palliative care team. Physical symptoms were managed with relatively low doses of end-of-life medications. High levels of patient and family anxiety, however, highlight the complexity of death from a stigmatised disease. Prompt acknowledgement of the vulnerability of advanced cancer patients with COVID-19 can facilitate proactive symptom management, anticipatory communication and enhance family support.
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INTRODUCTION: Palliative care within intensive care units (ICU) benefits decision-making, symptom control, and end-of-life care. It has been shown to reduce the length of ICU stay and the use of non-beneficial and unwanted life-sustaining therapies. However, it is often initiated late or not at all. There is increasing evidence to support screening ICU patients using palliative care referral criteria or "triggers". The aim of the project was to assess the need for palliative care referral during ICU admission using "trigger" tools. METHODS: Electronic record review of cancer patients who died in or within 30 days of discharge from oncology ICU, between 2016 and 2018. Patients referred to palliative care before or during ICU admission were identified. Three sets of palliative care referral "triggers" were applied: one that is being tested locally and two internationally derived tools. The proportion of patients who met any of these triggers during their final ICU admission was calculated. RESULTS: Records of 149 patients were reviewed: median age 65 (range 20-83). Most admissions (89%) were unplanned, with the most common diagnoses being haemato-oncology (31%) and gastrointestinal (16%) cancers. Most (73%) were unknown to palliative care pre-ICU admission; 44% were referred between admission and death. The median time from referral to death was 0 day (range 0-19). On ICU admission, 97-99% warranted referral to palliative care using locally and internationally derived triggers. CONCLUSION: All "trigger" tools identified a high proportion of patients who may have warranted a palliative care referral either before or during admission to ICU. The routine use of trigger tools could help streamline referral pathways and underpin the development of an effective consultative model of palliative care within the ICU setting to enhance decision-making about appropriate treatment and patient-centred care.
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Cuidados Paliativos , Assistência Terminal , Idoso , Cuidados Críticos , Humanos , Unidades de Terapia Intensiva , Encaminhamento e Consulta , Estudos RetrospectivosRESUMO
BACKGROUND: Haemato-oncology patients are likely to be referred later to palliative care than patients with solid tumours, despite experiencing similar symptom burden. Patients prior to stem cell transplant may benefit from symptom control, advance care planning and shared decision-making, and previous studies have demonstrated feasibility and benefit of such a service. However, the views of patients are not yet established, and are vital to ensure acceptability of the service. AIMS: To identify areas where a palliative care team may help to support patients being considered for a stem cell transplant, and to explore the attitudes and perceptions of patients towards palliative care at this time. DESIGN: A qualitative study including interviews (N = 12) and a focus group (N = 4) for patients pre- and post-transplant, using a semi-structured format via telephone, online video-conferencing and face-to-face discussions. Recordings were transcribed and analysed using thematic analysis. SETTING: A tertiary cancer centre in the UK. FINDINGS: Themes identified were the following: Identified needs, Information and decision-making, Importance of relationships, Changing perceptions of what palliative care means, and The future. Patients associate palliative care with terminal care due to indirect experiences. Patients were open to palliative care once its purpose was explained and described emotional and physical needs relevant to early palliative care. CONCLUSIONS: The involvement of early palliative care alongside haematology treatment prior to stem cell transplant may improve quality of life for patients and facilitate shared decision-making at a crucial stage of treatment. Early palliative care should be offered alongside haematology care around the time of stem cell transplant, with information provided to patients regarding its role.
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Transplante de Células-Tronco Hematopoéticas , Cuidados Paliativos , Atitude do Pessoal de Saúde , Humanos , Pesquisa Qualitativa , Qualidade de VidaRESUMO
BACKGROUND: As the demand for palliative care increases, more information is needed on how efficient different types of palliative care models are for providing care to dying patients and their caregivers. Evidence on the economic value of treatments and interventions is key to informing resource allocation and ultimately improving the quality and efficiency of healthcare delivery. We assessed the available evidence on the economic value of palliative and end-of-life care interventions across various settings. METHODS: Reviews published between 2000 and 2019 were included. We included reviews that focused on cost-effectiveness, intervention costs and/or healthcare resource use. Two reviewers extracted data independently and in duplicate from the included studies. Data on the key characteristics of the studies were extracted, including the aim of the study, design, population, type of intervention and comparator, (cost-) effectiveness resource use, main findings and conclusions. RESULTS: A total of 43 reviews were included in the analysis. Overall, most evidence on cost-effectiveness relates to home-based interventions and suggests that they offer substantial savings to the health system, including a decrease in total healthcare costs, resource use and improvement in patient and caregivers' outcomes. The evidence of interventions delivered across other settings was generally inconsistent. CONCLUSIONS: Some palliative care models may contribute to dual improvement in quality of care via lower rates of aggressive medicalization in the last phase of life accompanied by a reduction in costs. Hospital-based palliative care interventions may improve patient outcomes, healthcare utilization and costs. There is a need for greater consistency in reporting outcome measures, the informal costs of caring, and costs associated with hospice.
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Assistência Terminal , Cuidadores , Morte , Humanos , Cuidados PaliativosRESUMO
BACKGROUND: People who are nearing the end of life are high users of healthcare. The cost to providers is high and the value of care is uncertain. OBJECTIVES: To describe the pattern, trajectory and drivers of secondary care use and cost by people in Scotland in their last year of life. METHODS: Retrospective whole-population secondary care administrative data linkage study of Scottish decedents of 60 years and over between 2012 and 2017 (N=274 048). RESULTS: Secondary care use was high in the last year of life with a sharp rise in inpatient admissions in the last 3 months. The mean cost was £10 000. Cause of death was associated with differing patterns of healthcare use: dying of cancer was preceded by the greatest number of hospital admissions and dementia the least. Greater age was associated with lower admission rates and cost. There was higher resource use in the urban areas. No difference was observed by deprivation. CONCLUSIONS: Hospitalisation near the end of life was least frequent for older people and those living rurally, although length of stay for both groups, when they were admitted, was longer. Research is required to understand if variation in hospitalisation is due to variation in the quantity or quality of end-of-life care available, varying community support, patient preferences or an inevitable consequence of disease-specific needs.
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Place of death is an important outcome of end-of-life care. Many people do not have the opportunity to express their wishes and die in their preferred place of death. Advance care planning (ACP) involves discussion, decisions and documentation about how an individual contemplates their future death. Recording end-of-life preferences gives patients a sense of control over their future. Coordinate My Care (CMC) is London's largest electronic palliative care register designed to provide effective ACP, with information being shared with urgent care providers. The aim of this study is to explore determinants of dying in hospital. Understanding advance plans and their outcomes can help in understanding the potential effects that implementation of electronic palliative care registers can have on the end-of-life care provided. Retrospective observational cohort analysis included 21,231 individuals aged 18 or older with a Coordinate My Care plan who had died between March 2011 and July 2019 with recorded place of death. Logistic regression was used to explore demographic and end-of-life preference factors associated with hospital deaths. 22% of individuals died in hospital and 73% have achieved preferred place of death. Demographic characteristics and end-of-life preferences have impact on dying in hospital, with the latter having the strongest influence. The likelihood of in-hospital death is substantially higher in patients without documented preferred place of death (OR = 1.43, 95% CI 1.26-1.62, p<0.001), in those who prefer to die in hospital (OR = 2.30, 95% CI 1.60-3.30, p<0.001) and who prefer to be cared in hospital (OR = 2.77, 95% CI 1.94-3.96, p<0.001). "Not for resuscitation" individuals (OR = 0.43, 95% CI 0.37-0.50, p<0.001) and who preferred symptomatic treatment (OR = 0.36, 95% CI 0.33-0.40, p<0.001) had a lower likelihood of in-hospital death. Effective advance care planning is necessary for improved end-of-life outcomes and should be included in routine clinical care. Electronic palliative care registers could empower patients by embedding patients' wishes and personal circumstances in their care plans that are accessible by urgent care providers.
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Planejamento Antecipado de Cuidados/estatística & dados numéricos , Assistência Ambulatorial/estatística & dados numéricos , Mortalidade Hospitalar , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-IdadeRESUMO
OBJECTIVES: To analyse healthcare utilisation and costs in the last year of life in England, and to study variation by cause of death, region of patient residence and socioeconomic status. METHODS: This is a retrospective cohort study. Individuals aged 60 years and over (N=108 510) who died in England between 2010 and 2017 were included in the study. RESULTS: Healthcare utilisation and costs in the last year of life increased with proximity to death, particularly in the last month of life. The mean total costs were higher among males (£8089) compared with females (£6898) and declined with age at death (£9164 at age 60-69 to £5228 at age 90+) with inpatient care accounting for over 60% of total costs. Costs decline with age at death (0.92, 95% CI 0.88 to 0.95, p<0.0001 for age group 90+ compared with to the reference category age group 60-69) and were lower among females (0.91, 95% CI 0.90 to 0.92, p<0.0001 compared with males). Costs were higher (1.09, 95% CI 1.01 to 1.14, p<0.0001) in London compared with other regions. CONCLUSIONS: Healthcare utilisation and costs in the last year of life increase with proximity to death, particularly in the last month of life. Finer geographical data and information on healthcare supply would allow further investigating whether people receiving more planned care by primary care and or specialist palliative care towards the end of life require less acute care.
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PURPOSE: To examine the use of Normalisation Process Theory (NPT) to establish if, and in what ways, the AMBER care bundle can be successfully normalised into acute hospital practice, and to identify necessary modifications to optimise its implementation. METHOD: Multi-method process evaluation embedded within a mixed-method feasibility cluster randomised controlled trial in two district general hospitals in England. Data were collected using (i) focus groups with health professionals (HPs), (ii) semi-structured interviews with patients and/or carers, (iii) non-participant observations of multi-disciplinary team meetings and (iv) patient clinical note review. Thematic analysis and descriptive statistics, with interpretation guided by NPT components (coherence; cognitive participation; collective action; reflexive monitoring). Data triangulated across sources. RESULTS: Two focus groups (26 HPs), nine non-participant observations, 12 interviews (two patients, 10 relatives), 29 clinical note reviews were conducted. While coherence was evident, with HPs recognising the value of the AMBER care bundle, cognitive participation and collective action presented challenges. Specifically: (1) HPs were unable and unwilling to operationalise the concept of 'risk of dying' intervention eligibility criteria (2) integration relied on a 'champion' to drive participation and ensure sustainability; and (3) differing skills and confidence led to variable engagement with difficult conversations with patients and families about, for example, nearness to end of life. Opportunities for reflexive monitoring were not routinely embedded within the intervention. Reflections on the use of the AMBER care bundle from HPs and patients and families, including recommended modifications became evident through this NPT-driven analysis. CONCLUSION: To be successfully normalised, new clinical practices, such as the AMBER care bundle, must be studied within the wider context in which they operate. NPT can be used to the aid identification of practical strategies to assist in normalisation of complex interventions where the focus of care is on clinical uncertainty in acute hospital settings.
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Cuidados Críticos , Pacotes de Assistência ao Paciente , Atitude do Pessoal de Saúde , Interpretação Estatística de Dados , Inglaterra , Grupos Focais , Pessoal de Saúde , Hospitais , Humanos , Pesquisa Qualitativa , Ensaios Clínicos Controlados Aleatórios como Assunto , Inquéritos e Questionários , IncertezaRESUMO
PURPOSE: Benefits of early palliative referral in oncology are well documented. Palliative care referral "triggers" may help identify patients for referral. Many triggers have been proposed, but are not commonly used. This study reviewed the timing of palliative care involvement for patients in a tertiary referral oncology hospital, and whether the use of a trigger tool prior to admission would have facilitated earlier referral. METHODS: This was a retrospective cohort study of cancer patients who died during an unplanned admission between November 2014 and October 2015. A literature review identified seven palliative care referral tools which were included in this analysis, and compared by identifying common themes. Each tool was applied to patients by reviewing electronic patient records. Timing of palliative referral and whether patients met any triggers within 6 months before their terminal admission were assessed. RESULTS: A total of 159 patients were identified. Forty-six percent were referred to palliative care prior to terminal admission. Application of 6 out of 7 trigger tools would have resulted in the majority of patients (up to 91.2%) referred to palliative care prior to admission. Most patients (52.2%) were referred only during their terminal admission. Patients known to palliative care before admission (N = 73) were reviewed quicker than those who were not (N = 86) (median (range) 1 day (0-23 days) versus 5 days (0-59 days), p < 0.00001). CONCLUSIONS: In this patient cohort, a palliative referral trigger tool may have proactively identified most patients prior to their terminal admission. Prospective testing of trigger tools in oncology populations is warranted.
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Hospitalização/estatística & dados numéricos , Neoplasias/terapia , Cuidados Paliativos/métodos , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Encaminhamento e Consulta , Estudos Retrospectivos , Resultado do Tratamento , Adulto JovemRESUMO
BACKGROUND: Critical care and palliative care professionals treat and support seriously ill patients on a daily basis, and the possibility of burnout may be high. The consequences of burnout can include moral injury and distress, and compassion fatigue, which are detrimental to both care and staff. AIMS AND OBJECTIVES: To explore the incidence of moral distress in areas at high risk of burnout in a large cancer centre and to explore possible measures for addressing moral distress. DESIGN: A cross-sectional survey. METHODS: The Maslach Burnout Inventory was administered to critical care, critical care outreach, and palliative care teams in a specialist tertiary cancer centre. Open questions on supportive measures were also included. Burnout data were categorised into three domains of emotional exhaustion, depersonalization and personal accomplishment, and free-text analysis was conducted on the open-question data. RESULTS: A total of 63 professionals responded across the teams (45% response rate). A low level of burnout was observed in the emotional exhaustion domain; depersonalization was higher in the critical care professionals; and overall, personal accomplishment was higher than normative scores. Free-text analysis highlighted three categories of responses: Debriefing, Managing emotional well-being, and Valuing individuals. There was a need to proactively recognize issues; undertake more debriefs; and open forums regarding cases, particularly with difficult deaths. Engaging all professionals, support to deal with families, and mandatory moral distress and resilience training were suggested, alongside a focus on team building through external activities such as group relaxation sessions and walks. CONCLUSIONS: This study demonstrated a relatively low incidence of emotional exhaustion and depersonalization, and a slightly higher sense of personal accomplishment than normative scores despite staff working in an environment where high levels of burnout were expected. RELEVANCE TO CLINICAL PRACTICE: Staff highlighted possible solutions to reduce burnout, which included debriefing, managing emotional well-being, and valuing individuals.
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Esgotamento Profissional/prevenção & controle , Estado Terminal/enfermagem , Neoplasias/mortalidade , Equipe de Assistência ao Paciente/organização & administração , Resiliência Psicológica , Assistência Terminal/psicologia , Adaptação Psicológica , Enfermagem de Cuidados Críticos , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estresse Psicológico/psicologia , Inquéritos e QuestionáriosRESUMO
BACKGROUND: dying in one's preferred place is a quality marker for end-of-life care. Little is known about preferred place of death, or the factors associated with achieving this, for people with dementia. AIMS: to understand preferences for place of death among people with dementia; to identify factors associated with achieving these preferences. POPULATION: adults with a diagnosis of dementia who died between December 2015 and March 2017 and who were registered on Coordinate My Care, an Electronic Palliative Care Coordination System. DESIGN: retrospective cohort study. ANALYSIS: multivariable logistic regression investigated factors associated with achieving preferred place of death. RESULTS: we identified 1,047 people who died with dementia; information on preferred and actual place of death was available for 803. Preferred place of death was most commonly care home (58.8%, n = 472) or home (39.0%, n = 313). Overall 83.7% (n = 672) died in their preferred place. Dying in the preferred place was more likely for those most functionally impaired (OR 1.82 95% CI 1.06-3.13), and with a ceiling of treatment of 'symptomatic relief only' (OR 2.65, 95% CI 1.37-5.14). It was less likely for people with a primary diagnosis of cancer (OR 0.52, 95% CI 0.28-0.97), those who were 'for' cardio-pulmonary resuscitation (OR 0.32, 95% CI 0.16-0.62) and those whose record was created longer before death (51-250 days (ref <50 days) OR 0.60, 95% CI 0.38-0.94). CONCLUSIONS: most people with dementia want to die in a care home or at home. Achieving this is more likely where goals of treatment are symptomatic relief only, indicating the importance of advance care planning.
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Demência/epidemiologia , Preferência do Paciente/estatística & dados numéricos , Atividades Cotidianas , Fatores Etários , Idoso , Idoso de 80 Anos ou mais , Morte , Feminino , Humanos , Modelos Logísticos , Masculino , Estudos Retrospectivos , Assistência Terminal/psicologia , Assistência Terminal/estatística & dados numéricosRESUMO
OBJECTIVES: The aim of this evaluation is to describe the components and results of urgent care planning in Coordinate My Care (CMC), a digital clinical service for patients with life-limiting illness, for use if a patient is unable to make or express choices. Ceiling of treatment (CoT) plans were created detailing where the patient would like to receive their care and how aggressive medical interventions should be. METHODS: A retrospective service evaluation was completed of all CMC records created between December 2015 and September 2016 (n=6854). CMC records were divided into two cohorts: those with a CoT plan and those without. The factors associated with these cohorts were reviewed including age, diagnosis, resuscitation status and preferences for place of death (PPD). Analysis of the non-mandatory free text section was carried out. RESULTS: Two-thirds of patients had recorded decisions about CoT. Regardless of which CoT option was chosen, for most patients, PPD was home or care home. Patients with a CoT plan were more likely to have a documented resuscitation status. Patients with a CoT were more likely to die in their PPD (82%vs71%, OR 1.79, p<0.0001). A higher proportion of patients with a CoT decision died outside hospital. CONCLUSION: This analysis demonstrates that a substantial proportion of patients are willing to engage in urgent care planning. Three facets of urgent care planning identified include PPD, CoT and resuscitation status.