Pub Date : 2025-03-04DOI: 10.1136/spcare-2025-005370
Grace Kennedy, Niall Manktelow, Ita Harnett, Camilla Murtagh
Objectives: To establish practice among senior palliative medicine physicians regarding anticipatory prescribing to manage a terminal haemorrhage.To generate a guideline informed by data collected.
Methods: An electronic questionnaire was sent to palliative medicine consultants and specialist registrars in Ireland.
Results: The response rate was 50%. All respondents (100%) prescribe crisis packs. The most prescribed medications were morphine and midazolam. Over 95% prescribe medication via the subcutaneous route. Regarding indications for prescribing, about two-thirds of respondents would prescribe for a patient with a head and neck malignancy. Almost two-thirds of respondents do not follow any policy or guideline. The main area of variation is in the dose prescribed for those already on a scheduled opioid and/or benzodiazepine.
Conclusions: The proposed guideline is based on the expert opinion of questionnaire respondents. The recommended medications, route of prescription and broad indications for prescribing included in the guideline were based on a clear consensus. Most respondents vary the dose of crisis medication prescribed based on whether the patient is on a baseline anxiolytic/opioid. As the calculations used for dose variation were not consistent between respondents, the most reported calculation, 1/6 of 24-hour dose, is recommended in the guideline.
{"title":"Crisis pack prescribing in terminal haemorrhage: a national survey of specialist palliative medicine physicians.","authors":"Grace Kennedy, Niall Manktelow, Ita Harnett, Camilla Murtagh","doi":"10.1136/spcare-2025-005370","DOIUrl":"https://doi.org/10.1136/spcare-2025-005370","url":null,"abstract":"<p><strong>Objectives: </strong>To establish practice among senior palliative medicine physicians regarding anticipatory prescribing to manage a terminal haemorrhage.To generate a guideline informed by data collected.</p><p><strong>Methods: </strong>An electronic questionnaire was sent to palliative medicine consultants and specialist registrars in Ireland.</p><p><strong>Results: </strong>The response rate was 50%. All respondents (100%) prescribe crisis packs. The most prescribed medications were morphine and midazolam. Over 95% prescribe medication via the subcutaneous route. Regarding indications for prescribing, about two-thirds of respondents would prescribe for a patient with a head and neck malignancy. Almost two-thirds of respondents do not follow any policy or guideline. The main area of variation is in the dose prescribed for those already on a scheduled opioid and/or benzodiazepine.</p><p><strong>Conclusions: </strong>The proposed guideline is based on the expert opinion of questionnaire respondents. The recommended medications, route of prescription and broad indications for prescribing included in the guideline were based on a clear consensus. Most respondents vary the dose of crisis medication prescribed based on whether the patient is on a baseline anxiolytic/opioid. As the calculations used for dose variation were not consistent between respondents, the most reported calculation, 1/6 of 24-hour dose, is recommended in the guideline.</p>","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":""},"PeriodicalIF":2.0,"publicationDate":"2025-03-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143555908","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-03-03DOI: 10.1136/spcare-2025-005421
Sarah Edwards, Nicola Ubayasiri
Objectives: Death occurs within the emergency department (ED) sadly not infrequently. There is limited evidence exploring the demographics of these patients and the experience they have in the ED when they die or are approaching the end of life (EOL).
Methods: A retrospective review of patients aged 18 years and over who died in our major trauma centre was conducted. Data collected included demographics, frailty scores, time of arrival, time of death, time of EOL decision, cause of death in the ED and who wrote do not attempt cardiopulmonary resuscitation (DNACPR) forms.
Results: From January to December 2023, 326 patients died in the ED. 76% of patients were aged 65 years or over, with 69% having a clinical frailty score of 5 or more. The average time from arrival to death was 5 hours 56 min, with the average time from EOL decision to death being 1 hour and 53 min. 60% of all patients had a DNACPR, with 75% of those being written by ED clinicians.
Conclusion: EOL is becoming ever more important in the ED. Further work is needed to see if our local experience matches other EDs.
{"title":"End-of-life care in a major UK trauma centre.","authors":"Sarah Edwards, Nicola Ubayasiri","doi":"10.1136/spcare-2025-005421","DOIUrl":"https://doi.org/10.1136/spcare-2025-005421","url":null,"abstract":"<p><strong>Objectives: </strong>Death occurs within the emergency department (ED) sadly not infrequently. There is limited evidence exploring the demographics of these patients and the experience they have in the ED when they die or are approaching the end of life (EOL).</p><p><strong>Methods: </strong>A retrospective review of patients aged 18 years and over who died in our major trauma centre was conducted. Data collected included demographics, frailty scores, time of arrival, time of death, time of EOL decision, cause of death in the ED and who wrote do not attempt cardiopulmonary resuscitation (DNACPR) forms.</p><p><strong>Results: </strong>From January to December 2023, 326 patients died in the ED. 76% of patients were aged 65 years or over, with 69% having a clinical frailty score of 5 or more. The average time from arrival to death was 5 hours 56 min, with the average time from EOL decision to death being 1 hour and 53 min. 60% of all patients had a DNACPR, with 75% of those being written by ED clinicians.</p><p><strong>Conclusion: </strong>EOL is becoming ever more important in the ED. Further work is needed to see if our local experience matches other EDs.</p>","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":""},"PeriodicalIF":2.0,"publicationDate":"2025-03-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143540171","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Introduction: The rising global prevalence of cancer reveals significant regional disparities in palliative care adoption. While some countries have incorporated palliative care into their systems, over half of the world lacks such services, and oncology-specific palliative care integration is sparse. This study evaluates the global prevalence of palliative care use among cancer patients.
Methods: A comprehensive search across multiple databases was conducted to identify relevant studies. Data extraction and organisation were managed using Microsoft Excel, and analysis was performed with STATA/MP 17.0. A weighted inverse variance random-effects model was applied, and heterogeneity was assessed with Cochrane I² statistics. Subgroup analyses, sensitivity analyses and Egger's test were used to explore heterogeneity, publication bias and influential studies.
Results: The global prevalence of palliative care among cancer patients was 34.43% (95% CI: 26.60 to 42.25). Africa had the highest utilisation rate at 55.72% (95% CI: 35.45 to 75.99), while the USA had the lowest at 30.34% (95% CI: 19.83 to 40.86). Studies with sample sizes under 1000 showed a higher utilisation rate of 47.51% (95% CI: 36.69 to 58.32). Approximately 55% (95% CI: 35.26 to 74.80) of patients had a positive attitude towards palliative care, and 57.54% (95% CI: 46.09 to 69.00) were satisfied with the services. Positive attitudes were significantly associated with higher palliative care utilisation.
Conclusion: Only about one-third of cancer patients globally receive palliative care, with the highest utilisation in Africa. Nearly half of patients have a favourable attitude towards palliative care, and a similar proportion are satisfied with the services.
{"title":"Palliative care utilisation globally by cancer patients: systematic review and meta-analysis.","authors":"Addisu Getie, Gizachew Yilak, Temesgen Ayenew, Baye Tsegaye Amlak","doi":"10.1136/spcare-2024-005000","DOIUrl":"https://doi.org/10.1136/spcare-2024-005000","url":null,"abstract":"<p><strong>Introduction: </strong>The rising global prevalence of cancer reveals significant regional disparities in palliative care adoption. While some countries have incorporated palliative care into their systems, over half of the world lacks such services, and oncology-specific palliative care integration is sparse. This study evaluates the global prevalence of palliative care use among cancer patients.</p><p><strong>Methods: </strong>A comprehensive search across multiple databases was conducted to identify relevant studies. Data extraction and organisation were managed using Microsoft Excel, and analysis was performed with STATA/MP 17.0. A weighted inverse variance random-effects model was applied, and heterogeneity was assessed with Cochrane I² statistics. Subgroup analyses, sensitivity analyses and Egger's test were used to explore heterogeneity, publication bias and influential studies.</p><p><strong>Results: </strong>The global prevalence of palliative care among cancer patients was 34.43% (95% CI: 26.60 to 42.25). Africa had the highest utilisation rate at 55.72% (95% CI: 35.45 to 75.99), while the USA had the lowest at 30.34% (95% CI: 19.83 to 40.86). Studies with sample sizes under 1000 showed a higher utilisation rate of 47.51% (95% CI: 36.69 to 58.32). Approximately 55% (95% CI: 35.26 to 74.80) of patients had a positive attitude towards palliative care, and 57.54% (95% CI: 46.09 to 69.00) were satisfied with the services. Positive attitudes were significantly associated with higher palliative care utilisation.</p><p><strong>Conclusion: </strong>Only about one-third of cancer patients globally receive palliative care, with the highest utilisation in Africa. Nearly half of patients have a favourable attitude towards palliative care, and a similar proportion are satisfied with the services.</p>","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":""},"PeriodicalIF":2.0,"publicationDate":"2025-03-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143540172","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-03-03DOI: 10.1136/spcare-2024-005263
Emily Fitton, Karen Chumbley, Caroline Barry, Aneta Bartova, Ben Troke, Wayne Martin
Objectives: Our objective was to analyse the policies of hospitals and care homes in England as regards the use of do not attempt cardiopulmonary resuscitation (DNACPR) recommendations. We sought to identify (i) variations among policies at different institutions, and (ii) divergence of local policies from national guidance, particularly with reference to decisions either (a) to initiate cardiopulmonary resuscitation (CPR) despite the presence of a DNACPR recommendation, or (b) not to initiate CPR in the absence of a DNACPR recommendation.
Methods: We conducted a survey of 14 DNACPR and/or resuscitation policies, drawn from care homes, NHS trusts and hospices.
Results: Many of the policies we surveyed diverge significantly from national guidance. Some require that CPR be administered in all cases where no DNACPR recommendation has been made. Others fail to specify that CPR may be appropriate even in the presence of a DNACPR recommendation.
Conclusions: Local DNACPR policies currently place both patients and healthcare professionals at significant risk.
{"title":"Divergence in DNACPR and resuscitation policies: institutional survey in England.","authors":"Emily Fitton, Karen Chumbley, Caroline Barry, Aneta Bartova, Ben Troke, Wayne Martin","doi":"10.1136/spcare-2024-005263","DOIUrl":"https://doi.org/10.1136/spcare-2024-005263","url":null,"abstract":"<p><strong>Objectives: </strong>Our objective was to analyse the policies of hospitals and care homes in England as regards the use of do not attempt cardiopulmonary resuscitation (DNACPR) recommendations. We sought to identify (i) variations among policies at different institutions, and (ii) divergence of local policies from national guidance, particularly with reference to decisions either (a) to initiate cardiopulmonary resuscitation (CPR) despite the presence of a DNACPR recommendation, or (b) not to initiate CPR in the absence of a DNACPR recommendation.</p><p><strong>Methods: </strong>We conducted a survey of 14 DNACPR and/or resuscitation policies, drawn from care homes, NHS trusts and hospices.</p><p><strong>Results: </strong>Many of the policies we surveyed diverge significantly from national guidance. Some require that CPR be administered in all cases where no DNACPR recommendation has been made. Others fail to specify that CPR may be appropriate even in the presence of a DNACPR recommendation.</p><p><strong>Conclusions: </strong>Local DNACPR policies currently place both patients and healthcare professionals at significant risk.</p>","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":""},"PeriodicalIF":2.0,"publicationDate":"2025-03-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143540170","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-02-26DOI: 10.1136/spcare-2023-004759
Joseph Burdon, Samuel Fingas, Rachel Parry, Constantina Pitsillides, Paul Taylor
Background: The propensity for certain analgesics to cause sedation is well documented, yet physician-patient dialogue does not routinely include pre-emptive exploration of preferences regarding this side effect.
Objectives: To investigate the extent to which palliative patients would accept sedation as a side effect of analgesia and to identify factors affecting decision-making.
Methods: Patients (n=76) known to a specialist palliative care services were given hypothetical scenarios regarding pain and asked about the acceptability of varying levels of sedation occurring as an analgesic side effect. Demographic data, including diagnosis, performance status and experience of pain and sedation, were collated for evaluation of the influence of these factors on patient opinion.
Results: Most patients (89.47%) would be quite or very likely to accept mild sedation. A significant minority (40.79%) would accept high levels of sedation. There is no significant association with the acceptability of sedation according to demographics. Almost half (40.79%) reported that their responses may change if the prognosis were extended, typically for less sedation with a longer prognosis.
Conclusions: Increasing levels of sedation are less acceptable, although there is significant variation in views. Palliative care patients are likely to indicate preferences regarding their acceptability of sedation. Palliative physicians must explore preferences on an individualised basis.
{"title":"Sedation from analgesics: patient preference survey.","authors":"Joseph Burdon, Samuel Fingas, Rachel Parry, Constantina Pitsillides, Paul Taylor","doi":"10.1136/spcare-2023-004759","DOIUrl":"10.1136/spcare-2023-004759","url":null,"abstract":"<p><strong>Background: </strong>The propensity for certain analgesics to cause sedation is well documented, yet physician-patient dialogue does not routinely include pre-emptive exploration of preferences regarding this side effect.</p><p><strong>Objectives: </strong>To investigate the extent to which palliative patients would accept sedation as a side effect of analgesia and to identify factors affecting decision-making.</p><p><strong>Methods: </strong>Patients (n=76) known to a specialist palliative care services were given hypothetical scenarios regarding pain and asked about the acceptability of varying levels of sedation occurring as an analgesic side effect. Demographic data, including diagnosis, performance status and experience of pain and sedation, were collated for evaluation of the influence of these factors on patient opinion.</p><p><strong>Results: </strong>Most patients (89.47%) would be quite or very likely to accept mild sedation. A significant minority (40.79%) would accept high levels of sedation. There is no significant association with the acceptability of sedation according to demographics. Almost half (40.79%) reported that their responses may change if the prognosis were extended, typically for less sedation with a longer prognosis.</p><p><strong>Conclusions: </strong>Increasing levels of sedation are less acceptable, although there is significant variation in views. Palliative care patients are likely to indicate preferences regarding their acceptability of sedation. Palliative physicians must explore preferences on an individualised basis.</p>","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":"262-265"},"PeriodicalIF":2.0,"publicationDate":"2025-02-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139930039","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-02-26DOI: 10.1136/spcare-2023-004719
Colin Brewer, Marie-Claire Hopwood, Graham Winyard
Objective: UK campaigners for a law permitting assisted dying (AD) restricted to those with a maximum life expectancy of 6 months claim that this would largely remove the need for UK residents to seek AD in Switzerland. We wanted to discover whether this prediction was correct.
Methods: We analysed the diagnoses of UK residents who had such deaths including, for the first time, data from all three of the main Swiss providers of AD to non-residents, comparing them with figures from Oregon, which has a 6-month restriction.
Results: Only 22.7% of UK residents had cancer (Oregon 72.5%) while nearly half (49.6% and over half including dementias) had neurological conditions (Oregon 11.2%) and many with prognoses of much more than 6 months.
Conclusion: Overall, less than half would meet a 6-month prognosis criterion. This has significant implications for patients, palliative care clinicians and legislators.
{"title":"Assisted deaths in Switzerland for UK residents: diagnoses and their implications for palliative medicine and assisted dying legislation.","authors":"Colin Brewer, Marie-Claire Hopwood, Graham Winyard","doi":"10.1136/spcare-2023-004719","DOIUrl":"10.1136/spcare-2023-004719","url":null,"abstract":"<p><strong>Objective: </strong>UK campaigners for a law permitting assisted dying (AD) restricted to those with a maximum life expectancy of 6 months claim that this would largely remove the need for UK residents to seek AD in Switzerland. We wanted to discover whether this prediction was correct.</p><p><strong>Methods: </strong>We analysed the diagnoses of UK residents who had such deaths including, for the first time, data from all three of the main Swiss providers of AD to non-residents, comparing them with figures from Oregon, which has a 6-month restriction.</p><p><strong>Results: </strong>Only 22.7% of UK residents had cancer (Oregon 72.5%) while nearly half (49.6% and over half including dementias) had neurological conditions (Oregon 11.2%) and many with prognoses of much more than 6 months.</p><p><strong>Conclusion: </strong>Overall, less than half would meet a 6-month prognosis criterion. This has significant implications for patients, palliative care clinicians and legislators.</p>","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":"259-261"},"PeriodicalIF":2.0,"publicationDate":"2025-02-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139939632","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-02-26DOI: 10.1136/spcare-2023-004440
Bernadette Brady, Alexandra Brown, Michelle Barrett, Vikram Maraj, Fiona Lawler, Ross Murphy, Declan Walsh
Cardio-oncology is a dynamic field. Research has suggested that cancer itself can damage the heart, independent of cancer treatment-related cardiac dysfunction (CTRCD). The aim of this study was to establish the nature of cardiovascular abnormalities reported in cancer, excluding CTRCD. Scoping review search included cardiovascular abnormalities in adults with solid tumour malignancies, and excluded CTRCD and thrombotic events. Three databases (CINAHL, Embase, Medline) were searched, supplemented by a handsearch. All screening and data extraction was done by two researchers with consensus reached for any conflicts. Given the heterogeneous nature of the studies identified, data synthesis was narrative. The search identified 42 366 studies. Following deduplication and title/abstract screening, 195 studies were assessed for full-text eligibility. Forty-four studies are included in the final analysis. There are 19 prospective observational studies, 13 retrospective studies, 9 case reports and 3 cross-sectional studies. Types of abnormality identified include cardiomyopathy (16, including Takotsubo (9)), autonomic nervous system (ANS) dysfunction (10), biomarker disturbances (9), reduced myocardial strain (6) and others (3). Due to variable study design, the prevalence was not determined. Cardiovascular abnormalities were associated with morbidity (chest pain, dyspnoea, fatigue) and shortened prognosis. In conclusion: (1) There is evidence for cardiovascular dysfunction in patients with solid tumour malignancies, distinct from CTRCD. People with solid tumours have higher rates of cardiac disease, even when newly diagnosed and treatment naïve. (2) Abnormalities manifest mainly as cardiomyopathies, ANS dysfunction and raised biomarker levels and are associated with significant symptoms. (3) Treatment plans need to take account of these risks, and widen criteria for screening.
{"title":"Cardiac dysfunction in solid tumours: scoping review.","authors":"Bernadette Brady, Alexandra Brown, Michelle Barrett, Vikram Maraj, Fiona Lawler, Ross Murphy, Declan Walsh","doi":"10.1136/spcare-2023-004440","DOIUrl":"10.1136/spcare-2023-004440","url":null,"abstract":"<p><p>Cardio-oncology is a dynamic field. Research has suggested that cancer itself can damage the heart, independent of cancer treatment-related cardiac dysfunction (CTRCD). The aim of this study was to establish the nature of cardiovascular abnormalities reported in cancer, excluding CTRCD. Scoping review search included cardiovascular abnormalities in adults with solid tumour malignancies, and excluded CTRCD and thrombotic events. Three databases (CINAHL, Embase, Medline) were searched, supplemented by a handsearch. All screening and data extraction was done by two researchers with consensus reached for any conflicts. Given the heterogeneous nature of the studies identified, data synthesis was narrative. The search identified 42 366 studies. Following deduplication and title/abstract screening, 195 studies were assessed for full-text eligibility. Forty-four studies are included in the final analysis. There are 19 prospective observational studies, 13 retrospective studies, 9 case reports and 3 cross-sectional studies. Types of abnormality identified include cardiomyopathy (16, including Takotsubo (9)), autonomic nervous system (ANS) dysfunction (10), biomarker disturbances (9), reduced myocardial strain (6) and others (3). Due to variable study design, the prevalence was not determined. Cardiovascular abnormalities were associated with morbidity (chest pain, dyspnoea, fatigue) and shortened prognosis. In conclusion: (1) There is evidence for cardiovascular dysfunction in patients with solid tumour malignancies, distinct from CTRCD. People with solid tumours have higher rates of cardiac disease, even when newly diagnosed and treatment naïve. (2) Abnormalities manifest mainly as cardiomyopathies, ANS dysfunction and raised biomarker levels and are associated with significant symptoms. (3) Treatment plans need to take account of these risks, and widen criteria for screening.</p>","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":"168-177"},"PeriodicalIF":2.0,"publicationDate":"2025-02-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138481914","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-02-26DOI: 10.1136/spcare-2023-004673
Andre Bedendo, Andrew Papworth, Bryony Beresford, Bob Phillips, Chakrapani Vasudevan, Gabriella Lake Walker, Helen Weatherly, Richard Feltbower, Sebastian Hinde, Catherine Elizabeth Hewitt, Fliss Murtagh, Jane Noyes, Julia Hackett, Richard Hain, Sam Oddie, Gayathri Subramanian, Andrew Haynes, Lorna Fraser
Objectives: To describe end of life care in settings where, in the UK, most children die; to explore commonalities and differences within and between settings; and to test whether there are distinct, alternative models of end of life care.
Methods: An online survey of UK neonatal units (NNUs), paediatric intensive care units (PICUs) and children/young people's cancer principal treatment centres (PTCs) collected data on aspects of service organisation, delivery and practice relevant to end of life outcomes or experiences (referred to as the core elements of end of life care) across three domains: care of the child, care of the parent and bereavement care.
Results: 91 units/centres returned a survey (37% response rate). There was variation within and between settings in terms of whether and how core elements of end of life care were provided. PTCs were more likely than NNUs and PICUs to have palliative care expertise strongly embedded in the multidisciplinary team (MDT), and to have the widest range of clinical and non-clinical professions represented in the MDT. However, bereavement care was more limited. Many settings were limited in the practical and psychosocial-spiritual care and support available to parents.
Conclusions: Children at end of life, and families, experience differences in care that evidence indicates matter to them and impact outcomes. Some differences appear to be related to the type of setting. Subsequent stages of this research (the ENHANCE study) will investigate the relative contribution of these core elements of end of life care to child/parent outcomes and experiences.
{"title":"End of life care in paediatric settings: UK national survey.","authors":"Andre Bedendo, Andrew Papworth, Bryony Beresford, Bob Phillips, Chakrapani Vasudevan, Gabriella Lake Walker, Helen Weatherly, Richard Feltbower, Sebastian Hinde, Catherine Elizabeth Hewitt, Fliss Murtagh, Jane Noyes, Julia Hackett, Richard Hain, Sam Oddie, Gayathri Subramanian, Andrew Haynes, Lorna Fraser","doi":"10.1136/spcare-2023-004673","DOIUrl":"10.1136/spcare-2023-004673","url":null,"abstract":"<p><strong>Objectives: </strong>To describe end of life care in settings where, in the UK, most children die; to explore commonalities and differences within and between settings; and to test whether there are distinct, alternative models of end of life care.</p><p><strong>Methods: </strong>An online survey of UK neonatal units (NNUs), paediatric intensive care units (PICUs) and children/young people's cancer principal treatment centres (PTCs) collected data on aspects of service organisation, delivery and practice relevant to end of life outcomes or experiences (referred to as the core elements of end of life care) across three domains: care of the child, care of the parent and bereavement care.</p><p><strong>Results: </strong>91 units/centres returned a survey (37% response rate). There was variation within and between settings in terms of whether and how core elements of end of life care were provided. PTCs were more likely than NNUs and PICUs to have palliative care expertise strongly embedded in the multidisciplinary team (MDT), and to have the widest range of clinical and non-clinical professions represented in the MDT. However, bereavement care was more limited. Many settings were limited in the practical and psychosocial-spiritual care and support available to parents.</p><p><strong>Conclusions: </strong>Children at end of life, and families, experience differences in care that evidence indicates matter to them and impact outcomes. Some differences appear to be related to the type of setting. Subsequent stages of this research (the ENHANCE study) will investigate the relative contribution of these core elements of end of life care to child/parent outcomes and experiences.</p>","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":"221-230"},"PeriodicalIF":2.0,"publicationDate":"2025-02-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11874335/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142749875","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-02-26DOI: 10.1136/spcare-2024-005233
Honey Thomas, Jane Wallace, Paul Foley, Miriam J Johnson
Implantable cardioverter defibrillators (ICDs) are implanted in increasing numbers of patients with the aim of treating ventricular arrhythmias in high-risk patients and reducing their risk of dying. Individuals are also living longer with these devices. As a result, a greater number of patients with an ICD will deteriorate either with worsening cardiac failure, another non-cardiac condition or general frailty and will have a limited prognosis. Frequently they will be cared for by non-cardiac teams who may be less familiar with ICDs. Therefore, to ensure the person receives high-quality end-of-life care, they should have the opportunity to consider and discuss the option to deactivate the shock function of their ICD. If the ICD shock therapy is not discontinued, there is an increased risk that as a person reaches the last days of life, the ICD may deliver painful shocks which are distressing. There is also a risk that the device may delay the person's natural death which the person would not have chosen if they had been given the opportunity to discuss discontinuation. The British Heart Rhythm Society has developed a practical document to support all healthcare professionals who are caring for patients who have an ICD. This includes descriptions of different device types, ethical and legal aspects, timing and nature of ICD discussions and practical advice regarding how the devices may be deactivated. It aims to promote awareness and timely discussion between professionals and patients and to encourage best practice.
{"title":"Implantable cardioverter defibrillator deactivation and end-of-life: British Heart Rhythm Society practical consensus guideline.","authors":"Honey Thomas, Jane Wallace, Paul Foley, Miriam J Johnson","doi":"10.1136/spcare-2024-005233","DOIUrl":"10.1136/spcare-2024-005233","url":null,"abstract":"<p><p>Implantable cardioverter defibrillators (ICDs) are implanted in increasing numbers of patients with the aim of treating ventricular arrhythmias in high-risk patients and reducing their risk of dying. Individuals are also living longer with these devices. As a result, a greater number of patients with an ICD will deteriorate either with worsening cardiac failure, another non-cardiac condition or general frailty and will have a limited prognosis. Frequently they will be cared for by non-cardiac teams who may be less familiar with ICDs. Therefore, to ensure the person receives high-quality end-of-life care, they should have the opportunity to consider and discuss the option to deactivate the shock function of their ICD. If the ICD shock therapy is not discontinued, there is an increased risk that as a person reaches the last days of life, the ICD may deliver painful shocks which are distressing. There is also a risk that the device may delay the person's natural death which the person would not have chosen if they had been given the opportunity to discuss discontinuation. The British Heart Rhythm Society has developed a practical document to support all healthcare professionals who are caring for patients who have an ICD. This includes descriptions of different device types, ethical and legal aspects, timing and nature of ICD discussions and practical advice regarding how the devices may be deactivated. It aims to promote awareness and timely discussion between professionals and patients and to encourage best practice.</p>","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":"184-190"},"PeriodicalIF":2.0,"publicationDate":"2025-02-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142892083","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-02-26DOI: 10.1136/spcare-2024-005359
Despoina-Elvira Karakitsiou, Sarah Gilmour, Conn Haughey, Niall Corrigan
{"title":"Acute Mental Health Unit referrals to a Hospital Specialist and Supportive Palliative Care Liaison Team.","authors":"Despoina-Elvira Karakitsiou, Sarah Gilmour, Conn Haughey, Niall Corrigan","doi":"10.1136/spcare-2024-005359","DOIUrl":"https://doi.org/10.1136/spcare-2024-005359","url":null,"abstract":"","PeriodicalId":9136,"journal":{"name":"BMJ Supportive & Palliative Care","volume":" ","pages":""},"PeriodicalIF":2.0,"publicationDate":"2025-02-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143514497","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}