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in category palliative medicine

41 results found. For more information, click each entry to expand.

1: Response and role of palliative care during the COVID-19 pandemic: a national telephone survey of hospices in Italy
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Posted 20 Mar 2020

Response and role of palliative care during the COVID-19 pandemic: a national telephone survey of hospices in Italy
4,463 downloads medRxiv palliative medicine

Massimo Costantini, Katherine E Sleeman, Carlo Peruselli, Irene J Higginson

BackgroundPalliative care is an important component of healthcare in pandemics, contributing to symptom control, psychological support, and supporting triage and complex decision making. AimTo examine preparedness for, and impact of, the COVID-19 pandemic on hospices in Italy to inform the response in other countries. DesignCross-sectional telephone survey, carried out in March 2020. SettingSixteen Italian hospices, purposively sampled according to COVID-19 risk into high (more than 25 COVID-19 cases per 100,000 inhabitants), medium (15-25 cases per 100,000), and low risk (fewer than 15 cases per 100,000) regions. A brief questionnaire was developed to guide the interviews. Descriptive analysis was undertaken. ResultsSeven high risk, five medium risk and four low risk hospices provided data. Two high risk hospices had experienced COVID-19 cases among both patients and staff. All hospices had implemented policy changes, and several had rapidly implemented changes in practice including transfer of staff from inpatient to community settings, change in admission criteria, and daily telephone support for families. Concerns included scarcity of personal protective equipment, a lack of hospice-specific guidance on COVID-19, anxiety about needing to care for children and other relatives, and poor integration of palliative care in the acute setting. ConclusionThe hospice sector is capable of responding flexibly and rapidly to the COVID-19 pandemic. Governments must urgently recognise the essential contribution of hospice and palliative care to the COVID-19 pandemic, and ensure these services are integrated into the health care system response. Availability of personal protective equipment and setting-specific guidance is essential. What is already knownO_LIThe Coronavirus disease 2019 (COVID-19) has estimated global mortality of 3.4%, and numbers of cases are rapidly escalating worldwide. C_LIO_LIHospice services face unprecedented pressure, with resources rapidly stretched beyond normal bounds. C_LIO_LINo data exist on the response and role of hospice and palliative care teams to COVID-19. C_LIO_LIWithin Europe, Italy has been most affected by COVID-19. C_LI What this paper addsO_LIWe surveyed 16 Italian hospices in March 2020, all of which had implemented rapid policy changes in response to COVID-19. C_LIO_LIChanges to practice included moving to more support in community settings, change in admission criteria, and daily telephone support for families. C_LIO_LIPersonal protective equipment and guidance were lacking. C_LIO_LIAssessments of risk and potential impact on staff varied greatly. C_LI Implications for policy and practiceO_LIGovernments must recognise the hospice and palliative care sector as an essential component of the health care system response to COVID-19. C_LIO_LIThe hospice sector is capable of responding rapidly to the COVID-19 pandemic, but the potential of this response will be undermined unless hospices can access personal protective equipment. C_LIO_LIConsiderations for hospice services during the COVID-19 pandemic are changes to visitor policies, interruption of volunteering, shifting roles and responsibilities such as greater community working and telephone support for relatives. C_LI

2: Understanding and addressing challenges for Advance Care Planning in the COVID-19 pandemic: An analysis of the UK CovPall survey data from specialist palliative care services.
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Posted 30 Oct 2020

Understanding and addressing challenges for Advance Care Planning in the COVID-19 pandemic: An analysis of the UK CovPall survey data from specialist palliative care services.
1,235 downloads medRxiv palliative medicine

Andy Bradshaw, Lesley Dunleavy, Catherine Walshe, Nancy J Preston, Rachel L Cripps, Mevhibe Hocaoglu, Sabrina Bajwah, Matthew Maddocks, Adejoke Oluyase, Katherine E Sleeman, Irene J Higginson, Lorna K Fraser, Fliss EM Murtagh, On behalf of the CovPall study team

BackgroundDuring the COVID-19 pandemic, specialist palliative care services have an important role to play conducting high-quality and individualised Advance Care Planning discussions. Little is known about the challenges to Advance Care Planning in this context, or the changes services have made in adapting to them. AimTo describe the challenges experienced, and changes made to support, Advance Care Planning at the height of the COVID-19 pandemic. DesignCross-sectional on-line survey of UK palliative and hospice services response to COVID-19. Closed-ended responses are reported descriptively. Open-ended responses were analysed using a thematic Framework approach. Respondents277 UK palliative and hospice care services. Results37.9% of services provided more Advance Care Planning directly. 58.5% provided more support to others. Some challenges to Advance Care Planning pre-dated the pandemic, whilst other were COVID-19 specific or exacerbated by COVID-19. Six themes demonstrated challenges at different levels of the Social Ecological Model, including: complex decision making in the face of a new disease; maintaining a personalised approach; COVID-specific communication difficulties; workload and pressure; sharing information; and national context of fear and uncertainty. Two themes demonstrate changes made to support Advance Care Planning, including: adapting local processes and adapting local structures. ConclusionsProfessionals and healthcare providers need to ensure Advance Care Planning is individualised by tailoring it to the values, priorities, and ethnic, cultural, and religious context of each person. Policymakers need to consider carefully how high-quality, person-centred Advance Care Planning can be resourced as a part of standard healthcare ahead of future pandemic waves. Key StatementsO_ST_ABSWhat is already known about the topic?C_ST_ABS- An important part of palliative cares response to COVID-19 is ensuring that Advance Care Planning discussions occur with patients and their care networks - High quality Advance Care Planning is viewed as a process that adopts a holistic, collaborative, and individualised approach - Prior to COVID-19, challenges to Advance Care Planning included time constraints, lack of training, fears of taking away hope, limited resources, and insufficient knowledge What this paper adds?- The COVID-19 pandemic exacerbated already-existing challenges to conducting high-quality, individualised Advance Care Planning, including the ability to maintain a personalised approach and sharing information between services - COVID-specific challenges to Advance Care Planning exist, including the complexities of decision-making for a novel disease, communication issues, and workload pressures - In responding to these challenges, services adapted local processes (prioritising specific components, normalisation and integration into everyday practice) and structures (using technology, shifting resources, collaboration) of care Implications for practice, theory or policy- COVID-19 has provided an opportunity to re-think Advance Care Planning in which the starting point to any discussion is always the values and priorities of patients themselves - Providers and policymakers need to urgently consider how high-quality Advance Care Planning can be resourced and normalised as a part of standard care across the health sector, ahead of future or recurrent pandemic waves and in routine care more generally - We provide questions for health professionals, services, and policy makers to consider in working towards this

3: Changing patterns of mortality during the COVID-19 pandemic: population-based modelling to understand palliative care implications
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Posted 09 Jun 2020

Changing patterns of mortality during the COVID-19 pandemic: population-based modelling to understand palliative care implications
1,212 downloads medRxiv palliative medicine

Anna E Bone, Anne M Finucane, Javiera Leniz, Irene J Higginson, Katherine E Sleeman

Background COVID-19 has directly and indirectly caused high mortality worldwide. Aim To explore patterns of mortality during the COVID-19 pandemic and implications for palliative care provision, planning, and research. Design Descriptive analysis and population-based modelling of routine data. Participants and setting All deaths registered in England and Wales between 7th March and 15th May 2020. We described the following mortality categories by age, gender and place of death: 1) baseline deaths (deaths that would typically occur in a given period) 2) COVID-19 deaths 3) additional deaths not directly attributed to COVID-19. We estimated the proportion of COVID-19 deaths among people who would be in their last year of life in the absence of the pandemic, using simple modelling with explicit assumptions. Results During the first 10 weeks of the pandemic there were 101,615 baseline deaths, 41,105 COVID-19 deaths and 14,520 additional deaths. Deaths in care homes increased by 220% compared to home and hospital deaths which increased by 77% and 90%. Hospice deaths fell by 20%. Additional deaths were among older people (86% aged [≥]75 years), and most occurred in care homes (56%) and at home (43%). We estimate that 44% (38% to 50%) of COVID-19 deaths occurred among people who would have been in their last year of life in the absence of the pandemic. Conclusions Healthcare systems must ensure availability of palliative care to support people with severe COVID-19 in community and hospital settings. Integrated models of palliative care in care homes are urgently needed.

4: Harmonizing Palliative Care: National Survey to Evaluate the Knowledge and Attitude of Emergency Physicians towards Palliative Care
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Posted 20 Aug 2019

Harmonizing Palliative Care: National Survey to Evaluate the Knowledge and Attitude of Emergency Physicians towards Palliative Care
1,162 downloads medRxiv palliative medicine

Ameena Mohammed Al-Ansari, Saleem Nawaf Suroor, Sobhi Mostafa AboSerea, Wafaa Mostafa Abd-El-Gawad

Background and AimAlthough the challenges of integrating palliative care practices across care settings are real and well recognized until now little is known about palliative care practice of emergency physicians (EPs) and their accessibility to palliative care services in Kuwait. So the aim of this study was to explore the attitude, and knowledge encountered by EPs in providing palliative care in all general hospitals in Kuwait. MethodA cross-sectional survey was performed in the emergency rooms of all general hospitals in Kuwait using Palliative Care Attitude and Knowledge (PCAK) questionnaire. ResultsOf the total number of physicians working in emergency rooms (n=156), 104 (66.67%) had completed the survey. 76.9% (n=80) of the EPs had either uncertain attitude toward palliative care. Most of the EPs (n=73, 70.28%) didnt discuss the need of the patients to palliative care either with the patients or their families. Only 16 (15.4%) of the EPs responded correctly to the most of the questions while nearly half of the EPs (n=51, 49%) had poor knowledge especially in the most effective management of refractory dysnea (n=18, 17.3%). Experience [≥] 11yrs and better knowledge scores were independent predictors of positive attitude after adjustment of age, sex, qualifications, specialty, position, and nationality [OR: 5.747 (CI: 1.031-25.00), 1.458(CI: 1.148-1.851); p-value: 0.021, 0.002 respectively].. ConclusionsDespite recognizing palliative care as an important competence, the majority of the emergency physicians in Kuwait had uncertain attitude and poor knowledge towards palliative care. Lack of knowledge, direct accessibility to palliative care services and lack of support from palliative medicine specialists were the main reasons for uncertain and negative attitude. Efforts should be done to enhance physician training and provide palliative care resources in order to improve the quality of care given to patients visiting emergency departments. What this paper addsO_LIStudies proved that the emergency room may be a suitable place for early referral of patients who may benefit from palliative care especially old age to prevent upcoming undesired admissions and hospital deaths. C_LIO_LIThe integration of palliative care concepts and consultation teams into emergency medicine may help to avoid unnecessary and burdensome treatments, tests, and procedures that are not aligned with patients goals of care. C_LIO_LIAlthough the challenges of integrating palliative care practices across care settings are real and well recognized until now little is known about palliative care practice of emergency physicians and their accessibility to palliative care services in Kuwait. C_LIO_LIRecently, a newly developed tool called Palliative Care Attitude and Knowledge (PCAK) questionnaire was created to assess the attitude and knowledge of non-palliative physicians toward palliative care. So the aim of this study was to explore the attitude, and knowledge encountered by emergency physicians in providing palliative care using PCAK 8 in emergency departments in all general C_LIO_LIStudies showed that early palliative care consultation was shown to improve quality of life for cancer patients and may even lengthen their survival. C_LI What this study addsO_LIDespite recognizing palliative care as an important competence, the majority of the emergency physicians in Kuwait had uncertain attitude and poor knowledge towards palliative care. Lack of knowledge, direct accessibility to palliative care services and lack of support from palliative medicine specialists were the main reasons for uncertain and negative attitude. C_LIO_LIEfforts should be done to enhance physician training and provide palliative care resources in order to improve the quality of care given to patients visiting emergency departments. C_LI

5: Community end-of-life care during the COVID-19 pandemic: Initial findings of a UK primary care survey
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Posted 16 Feb 2021

Community end-of-life care during the COVID-19 pandemic: Initial findings of a UK primary care survey
1,161 downloads medRxiv palliative medicine

Sarah Mitchell, Phillip Oliver, Clare Gardiner, Dena Khan, Helen Chapman, Kirsty Boyd, Jeremy Dale, Stephen Barclay, Catriona Mayland

Background Thousands of people in the UK have required end-of-life care in the community during the COVID-19 pandemic. Primary healthcare teams (general practice and community nursing services) have provided the majority of this care, alongside specialist colleagues. There is a need to learn from this experience in order to inform future service delivery and planning. Aim To understand the views of general practitioners and community nurses providing end-of-life care during the first wave of the COVID-19 pandemic. Design and Setting A web-based, UK-wide questionnaire survey circulated via professional general practice and community nursing networks during September and October 2020. Method Responses were analysed using descriptive statistics and an inductive thematic analysis. Results Valid responses were received from 559 individuals (387 community nurses, 156 General Practitioners (GPs) and 16 unspecified role), from all regions of the UK. The majority reported increased involvement in providing community end-of-life care. Contrasting and potentially conflicting roles emerged between GPs and community nurses. There was increased use of remote consultations, particularly by GPs. Community nurses took greater responsibility in most aspects of end-of-life care practice, particularly face-to-face care, but reported feeling isolated. For some GPs and community nurses, there has been considerable emotional distress. Conclusion Primary healthcare services are playing a critical role in meeting increased need for end-of-life care in the community during the COVID-19 pandemic. They have adapted rapidly, but the significant emotional impact, especially for community nurses, needs addressing alongside rebuilding trusting and supportive team dynamics.

6: The challenges of caring for people dying from COVID-19: a multinational,observational study of palliative and hospice services (CovPall)
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Posted 03 Nov 2020

The challenges of caring for people dying from COVID-19: a multinational,observational study of palliative and hospice services (CovPall)
1,142 downloads medRxiv palliative medicine

Adejoke Oluyase, Mevhibe Hocaoglu, Rachel L Cripps, Matthew Maddocks, Catherine Walshe, Lorna K Fraser, Nancy J Preston, Lesley Dunleavy, Andy Bradshaw, Fliss EM Murtagh, Sabrina Bajwah, Katherine E Sleeman, Irene J Higginson, On behalf of the CovPall study team

BackgroundSystematic data on the care of people dying with COVID-19 are scarce. We studied the response of and challenges for palliative care services during the COVID-19 pandemic. MethodsWe surveyed palliative care and hospice services, contacted via relevant organisations. Multivariable logistic regression identified associations with key challenges. Content analysis explored free text. Findings458 services responded; 277 UK, 85 rest of Europe, 95 rest of the world (1 country unreported); 81% cared for patients with suspected or confirmed COVID-19, 77% had staff with suspected or confirmed COVID-19; 48% reported shortages of Personal Protective Equipment (PPE), 40% staff shortages, 24% medicines shortages, 14% shortages of other equipment. Services provided direct care and education in symptom management and communication; 91% changed how they worked. Care often shifted to increased community and hospital care, with fewer admissions to inpatient palliative care units. Factors associated with increased odds of PPE shortages were: charity rather than public management (OR 3{middle dot}07, 95% CI 1{middle dot}81-5{middle dot}20), inpatient palliative care unit rather than other setting (OR 2{middle dot}34, 95% CI 1{middle dot}46-3{middle dot}75). Being outside the UK was associated with lower odds of staff shortages (OR 0{middle dot}44, 95% CI 0{middle dot}26-0{middle dot}76). Staff described increased workload, concerns for their colleagues who were ill, whilst expending time struggling to get essential equipment and medicines, perceiving they were not a front-line service. InterpretationAcross all settings palliative care services were often overwhelmed, yet felt ignored in the COVID-19 response. Palliative care needs better integration with health care systems when planning and responding to future epidemics/pandemics. FundingMRC grant number MR/V012908/1, Cicely Saunders International and NIHR ARC South London. Research in contextO_ST_ABSEvidence before this studyC_ST_ABSSystematic data on the response of palliative care services during COVID-19 are lacking. A search of PubMed on 27 August 2020 (start date: 01 December 2019) using keywords (palliative care OR end of life care OR hospice) and (COVID-19 OR coronavirus) and (multinational OR international) identified no studies that reported multinational or international data; there were 79 articles, mostly opinion pieces, single centre case studies or reports. A search for systematic reviews about palliative care and hospice services during pandemics of PubMed, with the same time periods and the keywords (palliative care OR end of life care OR hospice) and (COVID-19 OR coronavirus OR SARS-CoV-2) and (systematic review OR meta-analysis), identified one systematic review by Etkind et al, which underpinned this research and shares two senior authors (Higginson, Sleeman). Of 3094 articles identified, 10 studies, all observational, considered the palliative care response in pandemics. Studies were from single units or countries: West Africa, Taiwan, Hong Kong, Singapore, the U.S. (a simulation), and Italy (the only one considering COVID-19). The review concluded hospice and palliative care services are essential in the response to COVID-19 but systematic data are urgently needed to inform how to improve care for those who are likely to die, and/or have severe symptoms. Added value of this studyWe found a high response by palliative care services during the COVID-19 pandemic. Services cared for a surge in patients dying from and with severe symptoms due to COVID-19 in three main categories: patients with underlying conditions and/or multimorbid disease not previously known to palliative care (70% of services), patients already known to palliative care services (47% of services), and patients, previously healthy, now dying from COVID-19 (37% of services). More than three quarters of services reported having staff with suspected or confirmed COVID-19. We found high levels of shortages of Personal Protective Equipment (PPE), staff, medicines and other equipment, with different effects according to service management, care settings and world regions. Mitigating these challenges was extremely time consuming, limiting the palliative care response. Implications of all the available evidenceDespite actively supporting dying patients, those with severe symptoms, their families/carers, and supporting other clinicians, palliative care professionals felt ignored by national health systems during the COVID-19 pandemic. Palliative care services need equipment, medicines and adequate staff to contribute fully to the pandemic response. Their crucial role must be better recognised and integrated, including into infection disease management, with improved workforce planning and management, so that patients and families can be better supported.

7: ''Necessity is the mother of invention'': Specialist palliative care service innovation and practice change in response to COVID-19. Results from a multi-national survey (CovPall)
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Posted 03 Nov 2020

''Necessity is the mother of invention'': Specialist palliative care service innovation and practice change in response to COVID-19. Results from a multi-national survey (CovPall)
1,112 downloads medRxiv palliative medicine

Lesley Dunleavy, Nancy J Preston, Sabrina Bajwah, Andy Bradshaw, Rachel L Cripps, Lorna K Fraser, Matthew Maddocks, Mevhibe Hocaoglu, Fliss EM Murtagh, Adejoke Oluyase, Katherine E Sleeman, Irene J Higginson, Catherine Walshe, on behalf of the CovPall study team

BackgroundSpecialist palliative care services have a key role in a whole system response to COVID-19. There is a need to understand service response to share good practice and prepare for future care. AimTo map and understand specialist palliative care services innovations and practice changes in response to COVID-19 (CovPall). DesignOnline survey of specialist palliative care providers, disseminated via key stakeholders. Data collected on service characteristics, innovations and changes in response to COVID-19. Statistical analysis included frequencies, proportions and means, and free-text comments were analysed using a qualitative framework approach. Setting/participantsInpatient palliative care units, home nursing services, hospital and home palliative care teams from any country. Results458 respondents: 277 UK, 85 Europe (except UK), 95 World (except UK and Europe), 1 missing country. 54.8% provided care across 2+ settings; 47.4% hospital palliative care teams, 57% in-patient palliative care units, and 57% home palliative care teams. The crisis context meant services implemented rapid changes. Changes involved streamlining, extending and increasing outreach of services, using technology to facilitate communication, and implementing staff wellbeing innovations. Barriers included; fear and anxiety, duplication of effort, information overload, funding, and IT infrastructure issues. Enablers included; collaborative teamwork, pooling of staffing resources, staff flexibility, a pre-existing IT infrastructure and strong leadership. ConclusionsSpecialist palliative care services have been flexible, highly adaptive and have adopted a frugal innovation model in response to COVID-19. In addition to financial support, greater collaboration is essential to minimise duplication of effort and optimise resource use. ISRCTN16561225https://doi.org/10.1186/ISRCTN16561225 Key StatementsO_ST_ABSWhat is already known about the topic?C_ST_ABSO_LISpecialist palliative care is part of a whole healthcare system response to COVID-19. C_LIO_LIServices need to make practice changes in response to the global pandemic. C_LI What this paper addsO_LISpecialist palliative care services responded rapidly to COVID-19 in both planning for change and then adapting to needs and requirements. C_LIO_LIServices often relied on improvisation, quick fixes and making do when responding to the COVID-19 crisis. C_LI Implications for practice, theory or policyO_LIIn addition to financial support, greater collaboration is essential to build organisational resilience and drive forward innovation, by minimising duplication of effort and optimising resource use. C_LIO_LIThe effectiveness and sustainability of any changes made during the crisis needs further evaluation. C_LI

8: Neonatal death: supporting bereaved mothers
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Posted 14 Jul 2020

Neonatal death: supporting bereaved mothers
1,035 downloads medRxiv palliative medicine

Alia Embaireeg, Amal Ayed, Mariam Ayed

Background: Death of a child is a devastating experience for parents, owing to which parents may show dissatisfaction towards medical care or suffer from intense and prolonged grief. The objective of the present study was to explore the needs of bereaved mothers after the death of their infant. Methods: The present study was a descriptive qualitative design that consisted of 10 mothers who have been bereaved in the past year. All mothers were recruited from the registry. Data were obtained through an unstructured single interview and analyzed using conventional content analysis. Results: The current study demonstrated that parents had the same needs despite their different backgrounds, socioeconomic standards, and religious beliefs. Their needs were based on several main points; 1) Lack of sensitivity/method in delivering the news, 2) Bonding with the child; 3) Safety and family support; 4) Providing understanding and meaning; 5) Ability to express emotions. Conclusions: The key components that should be considered to support the bereaved parents include honesty, information, choices, and timing. The present study provided a comprehensive view of the overall experiences of the parents with neonatal death and the ability to give guidance to the healthcare providers.

9: Understanding the impact of the Covid-19 pandemic on delivery of rehabilitation in specialist palliative care services: An analysis of the CovPall-Rehab survey data.
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Posted 19 Apr 2021

Understanding the impact of the Covid-19 pandemic on delivery of rehabilitation in specialist palliative care services: An analysis of the CovPall-Rehab survey data.
1,027 downloads medRxiv palliative medicine

Jo Bayly, Andy Bradshaw, Lucy Fettes, Muhammed Omarjee, Helena Talbot-Rice, Catherine Walshe, Katherine E Sleeman, Sabrina Bajwah, Lesley Dunleavy, Mevhibe Hocaoglu, Adejoke Oluyase, Ian Garner, Rachel L Cripps, Nancy J Preston, Lorna K Fraser, Fliss EM Murtagh, Irene J Higginson, Matthew Maddocks

Abstract Background: Palliative rehabilitation involves multi-professional processes and interventions aimed at optimising patients symptom self-management, independence, and social participation throughout advanced illness. Rehabilitation services were highly disrupted during the Covid-19 pandemic. Aim: To understand rehabilitation provision in palliative care services during the Covid-19 pandemic, identifying and reflecting on adaptative and innovative practice to inform ongoing provision. Design: Cross-sectional national online survey. Setting/participants: Rehabilitation leads for specialist palliative care services across hospice, hospital, or community settings, conducted from 30/07/20 to 21/09/2020. Findings: 61 completed responses (England, n=55; Scotland, n=4; Wales, n=1; and Northern Ireland, n=1) most frequently from services based in hospices (56/61, 92%) providing adult rehabilitation. Most services (55/61, 90%) reported rehabilitation provision becoming remote during Covid-19 and half reported reduced caseloads. Rehabilitation teams frequently had staff members on sick-leave with suspected/confirmed Covid-19 (27/61, 44%), redeployed to other services/organisations (25/61, 41%) or furloughed (15/61, 26%). Free text responses were constructed into four themes: (i) fluctuating shared spaces; (ii) remote and digitised rehabilitation offer; (iii) capacity to provide and participate in rehabilitation; (iv) Covid-19 as a springboard for positive change. These represent how rehabilitation services contracted, reconfigured, and were redirected to more remote modes of delivery, and how this affected the capacity of clinicians and patients to participate in rehabilitation. Conclusion: This study demonstrates how changes in provision of rehabilitation during the pandemic could act as a springboard for positive changes. Hybrid models of rehabilitation have the potential to expand the equity of access and reach of rehabilitation within specialist palliative care.

10: Timing and nature of palliative care discussions are patient-specific according to clinicians: a qualitative study
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Posted 29 Dec 2019

Timing and nature of palliative care discussions are patient-specific according to clinicians: a qualitative study
1,008 downloads medRxiv palliative medicine

N Tavares, KJ Hunt, N Jarrett, T M A Wilkinson

BackgroundChronic obstructive pulmonary disease (COPD) is associated with an unpredictable and complex disease trajectory. Consequently, most patients are not involved in advance care planning and do not receive palliative care until the end of life. AimTo explore clinicians experiences, opinions and recommendations for the timing and nature of palliative care discussions in COPD. DesignQualitative interviews with nurses and doctors that provide direct care to COPD patients. Setting/Participants14 clinicians working across primary and secondary care in the UK were interviewed. ResultsParticipants suggested that those with the appropriate expertize and an established relationship with patients were best placed to initiate discussions about palliative and future care. Early, gradual and informed palliative and future care discussions were considered best practice, however they uncommon occurrence due to service, patient and clinician-related barriers. The unpredictable disease trajectory and fine balance between providing acute care and discussing palliative care options were suggested as key greatest barriers for discussions. However, damaging patient hope was a concern for clinicians and reduced their inclination to discuss palliative care. Clinicians did not seem to think that patients were ready for discussions, therefore they avoided broaching the subject leading early in the disease trajectory. ConclusionStand-alone conversations about and near the end of life was described as current usual practice by clinicians, however individualised early, regular and gradual discussions with patients about immediate and long-term future plans may make such discussions feel less negative and ordinary for patients and clinicians.

11: Digital Health Interventions in Palliative Care: A Systematic Meta-Review and Evidence Synthesis
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Posted 18 Sep 2020

Digital Health Interventions in Palliative Care: A Systematic Meta-Review and Evidence Synthesis
990 downloads medRxiv palliative medicine

Anne Finucane, Hannah O'Donnell, Jean Lugton, Connie Swenson, Claudia Pagliari

Digital health interventions (DHIs) have the potential to improve the accessibility and effectiveness of palliative care but heterogeneity amongst existing systematic reviews presents a challenge for evidence synthesis. This rigorous meta-review applied a structured search of 10 databases from 2006 to 2020, revealing 21 relevant systematic reviews, encompassing 332 unique publications. Most reviews were moderate quality. Interventions delivered via videoconferencing (17%), electronic healthcare records (16%) and phone (13%) were most frequently described. DHIs were typically used in palliative care for education (20%), symptom management (15%), decision-making support (13%), information provision or management (13%), and communication (9%). Positive impacts were reported on education, decision-making, information-sharing, communication, and costs. Impacts on symptom management were either positive or showed no harmful effects. However often DHIs were described but not evaluated. Responsive pragmatic research designs are now needed to guide further evaluation, implementation and to inform future service innovation.

12: Early Palliative Care Intervention Helps with Decreased Length Of Stay And Cost Cutting In A Safety Net Hospital In Central Valley In California.
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Posted 07 Aug 2020

Early Palliative Care Intervention Helps with Decreased Length Of Stay And Cost Cutting In A Safety Net Hospital In Central Valley In California.
938 downloads medRxiv palliative medicine

Soujanya Sodavarapu, Siamak M Seraj, Gurinder Ghotra, Malkinder Singh, Nasim Khosravi, Kinnari Parikh, Syung Min Jung

Objective: To determine if early palliative care intervention within two days of hospital admission affects the length of stay and cost savings. Methods: Using a retrospective chart review, 570 patients who received palliative care consultation were reviewed between 2016 and 2018. 287 patients were seen within 2 days of days and the total 355 were seen within 3 days of admission. Data on length of stay and total charges were analyzed for both groups. Results: In the early consult group, both lengths of stay and cost of care in total charges decreased by 64% (p<0.0001) and 58% (p<0.0001), respectively. Multiple linear regressions showed everyone day increase in the date of the consultation is associated with an increase in the length of stay by 1.02 days. (R-squared 0.65, p-value <0.0001, CI 0.95-1.09). The number of palliative care consultations increased by 60% from 2016 to 2017. Conclusion: Our study reiterates the importance of a multidisciplinary approach in identifying patients who will benefit from palliative care consultation and addressing goals of care early in their hospital course. As such, our study suggests the importance of emphasizing early palliative care and its potential benefits in public hospitals.

13: Outcomes and factors influencing care decisions in life-threatening fetal and neonatal anomalies
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Posted 14 Jul 2020

Outcomes and factors influencing care decisions in life-threatening fetal and neonatal anomalies
898 downloads medRxiv palliative medicine

Esther J Lee, Simone Stenekes, Michael Harlos

Objective: A retrospective chart review was undertaken to describe the outcomes following the diagnosis of a life-threatening fetal and neonatal anomaly. Study Design: Criteria for a life-threatening anomaly included genetic conditions, renal and pulmonary diseases, central nervous system anomalies (CNS), and cardiac defects. Information that could impact decision making was collected from provincial databases Results: 176 patients met the inclusion criteria. The majority of the diagnoses were in the genetic and CNS categories. 58% (n=103) decided to terminate the pregnancy. When a live birth occurred (n=39), the mean length of survival was 13.5 days (range 1-156 days), with one death occurring at home. Conclusions: Ethnicity and geographical factors were associated with the decision to terminate a pregnancy. The involvement of the palliative care service was associated with decreased interventions. Further research to determine the needs of families would be helpful in identifying program priorities in perinatal palliative care.

14: Complementary frailty and mortality prediction models on older patients as a tool for assessing palliative care needs
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Posted 25 Jan 2021

Complementary frailty and mortality prediction models on older patients as a tool for assessing palliative care needs
891 downloads medRxiv palliative medicine

Vicent Blanes-Selva, Ascensión Doñate-Martínez, Gordon Linklater, Juan Miguel García-Gómez

BackgroundPalliative care (PC) has demonstrated benefits for life-limiting illnesses. Cancer patients have mainly accessed these services, but there is growing consensus about the importance of promoting access for patients with non-malignant disease. Bad survival prognosis and patients frailty are usual dimensions to decide PC inclusion. ObjectivesThe main aim of this work is to design and evaluate three quantitative models based on machine learning approaches to predict frailty and mortality on older patients in the context of supporting PC decision making: one-year mortality, survival regression and one-year frailty classification. MethodsThe dataset used in this study is composed of 39,310 hospital admissions for 19,753 older patients (age >= 65) from January 1st, 2011 to December 30th, 2018. All prediction models were based on Gradient Boosting Machines. From the initial pool of variables at hospital admission, 20 were selected by a recursive feature elimination algorithm based on the random forests GINI importance criterion. Besides, we run an independent grid search to find the best hyperparameters in each model. The evaluation was performed by 10-fold cross-validation and area under the receiver operating characteristic curve and mean absolute error were reported. The Cox proportional-hazards model was used to compare our proposed approach with classical survival methods. ResultsThe one-year mortality model achieved an AUC ROC of 0.87 {+/-} 0.01; the mortality regression model achieved an MAE of 329.97 {+/-} 5.24 days. The one-year frailty classification reported an AUC ROC of 0.9 {+/-} 0.01. The Spearmans correlation between the admission frailty index and the survival time was -0.1, while the point-biserial correlation between one-year frailty index and survival time was -0.16. ConclusionsOne-year mortality model performance is at a state-of-the-art level. Frailty Index used in this study behaves coherently with other works in the literature. One-year frailty classifier demonstrated that frailty status within the year could be predicted accurately. To our knowledge, this is the first study predicting one-year frailty status based on a frailty index. We found mortality and frailty as two weakly correlated and complementary PC needs assessment criteria. Predictive models are available online at http://demoiapc.upv.es.

15: Modelling Palliative and End of Life resource requirements during COVID-19: implications for quality care
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Posted 24 Jul 2020

Modelling Palliative and End of Life resource requirements during COVID-19: implications for quality care
872 downloads medRxiv palliative medicine

Daniel Chalk, Sara Robbins, Rohan Kandasamy, Kate Rush, Ajay Aggarwal, Richard Sullivan, Charlotte Chamberlain

Background There were between 84,891 and 113,139 all-cause excess deaths in the United States (US) from February 1st to 25th May 2020. These deaths are widely attributed directly and indirectly to the COVID-19 pandemic. This surge in death necessitates a matched health system response to relieve serious health related suffering at the end of life (EoL) and achieve a dignified death, through timely and appropriate expertise, medication and equipment. Identifying the human and material resource needed relies on modelling resource and understanding anticipated surges in demand. Methods A Discrete Event Simulation model designed in collaboration with health service funders, health providers, clinicians and modellers in the South West of England was created to estimate the resources required during the COVID-19 pandemic to care for deaths from COVID-19 in the community for a geographical area of nearly 1 million people. While our analysis focused on the UK setting, the model is flexible to changes in demand and setting. Results The model predicts that a mean of 11.97 hours (0.18 hours Standard Error (SE), up to a max of 28 hours) of additional community nurse time, up to 33 hours of care assistant time (mean 9.17 hours, 0.23 hours SE), and up to 30 hours additional care from care assistant night-sits (mean of 5.74 hours per day, 0.22 hours SE) will be required per day as a result of out of hospital COVID-19 deaths. Specialist palliative care demand is predicted to increase up to 19 hours per day (mean of 9.32 hours per day, 0.12 hours SE). An additional 286 anticipatory medicine bundles or "just in case" prescriptions per month will be necessary to alleviate physical symptoms at the EoL care for patients with COVID-19: an average additional 10.21 bundles (0.06 SE) of anticipatory medication per day. An average additional 9.35 syringe pumps (0.11 SE) could be needed to be in use per day (between 1 and 20 syringe pumps). Conclusion Modelling provides essential data to prepare, plan and deliver a palliative care pandemic response tailored to local work patterns and resource. The analysis for a large region in the South West of England shows the significant additional physical and human resource required to relieve suffering at the EoL as part of a pandemic response.

16: Prohibit, protect, or adapt? The changing role of volunteers in palliative and hospice care services during the COVID-19 pandemic. A multinational survey (CovPall).
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Posted 29 Mar 2021

Prohibit, protect, or adapt? The changing role of volunteers in palliative and hospice care services during the COVID-19 pandemic. A multinational survey (CovPall).
840 downloads medRxiv palliative medicine

Catherine Walshe, Ian Garner, Lesley Dunleavy, Nancy J Preston, Andy Bradshaw, Rachel L Cripps, Sabrina Bajwah, Katherine E Sleeman, Mevhibe Hocaoglu, Matthew Maddocks, Fliss EM Murtagh, Adejoke Oluyase, Lorna K Fraser, Irene J Higginson

Background: Volunteers are common within palliative care services, and provide support that enhances care quality. The support they provided, and any role changes, during the COVID-19 pandemic are unknown. Aims: To understand volunteer deployment and activities within palliative care services, and to identify what may affect any changes in volunteer service provision, during the COVID-19 pandemic. Methods: Multi-national online survey disseminated via key stakeholders to specialist palliative care services, completed by lead clinicians. Data collected on volunteer roles, deployment, and changes in volunteer engagement. Analysis included descriptive statistics, a multivariable logistic regression, and analysis of free-text comments using a content analysis approach. Results: 458 respondents: 277 UK, 85 rest of Europe, and 95 rest of the world. 68.5% indicated volunteer use pre-COVID-19. These were across a number of roles (from 458): direct patient/family facing support (58.7%), indirect support (e.g. driving) (52.0%), back office (48.5%) and fundraising (45.6%). 11% had volunteers with COVID-19. Of those responding to a question on change in volunteer deployment (328 of 458) most (256/328, 78%) indicated less or much less use of volunteers. Less use of volunteers was associated with being an in-patient hospice, (OR=0.15, 95%CI = 0.07-0.3 p<.001). This reduction in volunteers was felt to protect potentially vulnerable volunteers and with policy changes preventing volunteers from supporting services. However, adapting was also seen where new roles were created, or existing roles pivoted to provide virtual support. Discussion and conclusion: Volunteers were mostly prevented from supporting many forms of palliative care, particularly in in-patient hospices, which may have quality and safety implications given their previously central roles. Volunteer re-deployment plans are needed that take a more considered approach, using volunteers more flexibly to enhance care while ensuring safe working practices. Consideration needs to be given to widening the volunteer base away from those who may be considered to be most vulnerable to COVID-19

17: Off-label use in Palliative Care. More common than expected. A retrospective chart review
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Posted 20 Jan 2021

Off-label use in Palliative Care. More common than expected. A retrospective chart review
787 downloads medRxiv palliative medicine

Vera C Hagemann, Claudia Bausewein, Constanze Remi

Objective Off-label drug use seems to be integral to palliative care pharmacotherapy. Balancing potential risks and benefits in the context of limited therapeutic options is challenging. To provide specific support for clinicians in dealing with off-label use, it is essential to understand off-label use in everyday clinical practice. The aim of this pilot study was to quantify and describe off-label use in a palliative care unit. Methods Retrospective chart review of all adult patients treated on a palliative care unit in 10/2017. All data on drug use e.g. indication, dose, route of administration were extracted and matched with the prescribing information. Identified off-label use was subsequently compared with recommendations in the relevant literature. The main outcome measure was frequency and type of off-label drug use. Results 2,352 drug application days (d) and 93 drugs were identified for 28 patients. Of all drugs, 47 (51%) were used off-label at least once. Most off-label uses concerned indication (57%), followed by mode of administration. In drugs highly relevant to palliative care the rate of off-label use was as high as 67%. The extent to which off-label therapy was supported by literature was very variable and ranged from 0 to 88%. Conclusions This single-unit data confirms the high prevalence of off-label use in palliative medicine and demonstrates that off-label use in palliative care is very multifaceted. The data presented allows for a more precise characterization of various aspects of off-label use in order to derive concrete further measures for research and clinical practice.

18: Technology in Palliative Care (TIP): the identification of digital priorities for palliative care research using a modified Delphi method
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Posted 27 Jun 2021

Technology in Palliative Care (TIP): the identification of digital priorities for palliative care research using a modified Delphi method
744 downloads medRxiv palliative medicine

Amara Callistus Nwosu, Tamsin McGlinchey, Justin Sanders, Sarah Stanley, Jennifer Palfrey, Patrick Lubbers, Laura Chapman, Anne Finucane, Stephen Mason

BackgroundDevelopments in digital health (describing technologies which use computing platforms, connectivity, software, and sensors for health care and related purposes) has the potential to transform the delivery of health and social care to help citizens manage their own health. Currently, we lack consensus about digital health research priorities in palliative care and lack theories about how these technologies might improve care outcomes. Global palliative care need is expected to increase due to the consequences of an ageing population; therefore, it is important for healthcare leaders to identify innovations to ensure that an increasingly frail population have appropriate access to palliative care services. Consequently, it is important to articulate research priorities as the first step to determine how we should allocate finite resources to a field saturated with rapidly developing innovations. AimsTo identify research priority areas for digital health in palliative care. MethodsWe selected the digital health trends, most relevant to palliative care, from a list of emerging trends reported by the Future Today Institute. We conducted a modified Delphi process and consensus meeting with palliative care experts to identify research priorities. We used the views of public representatives to gain their perspectives of the agreed priorities. ResultsOne hundred and three experts (representing 11 countries) participated in the 1st Delphi round. Fifty-five participated in the 2nd round (53% of 1st round). Eleven experts attended the final consensus meeting. We identified 16 priorities areas, which were summarised into eight themes. These themes were: big data, mobile devices, telehealth and telemedicine, virtual reality, artificial intelligence, the smart home, biotechnology and digital legacy. ConclusionsThe identified priorities in this paper represent a wide range of important emerging areas in field of digital health, personalised medicine, and data science. Human-centred design and robust governance systems should be considered in future research. It is important that the barriers and risks of using these technologies in palliative care are properly addressed to ensure that these tools are used meaningfully, wisely and safely and that do not cause unintentional harm.

19: Family physicians supporting patients with palliative care needs within the Patient Medical Home in the community: An Appreciative Inquiry qualitative study
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Posted 06 Jan 2021

Family physicians supporting patients with palliative care needs within the Patient Medical Home in the community: An Appreciative Inquiry qualitative study
689 downloads medRxiv palliative medicine

Amy Tan, Ronald Spice, Aynharan Sinnarajah

ObjectivesCanadians want to live and die in their home communities. Unfortunately, Canada has the highest proportion of deaths in acute care facilities as compared to other developed nations. This study aims to identify the essential components required to best support patients and families with palliative care needs in their communities to inform system changes and empower family physicians (FPs) in providing community-based palliative care for patients. DesignAppreciative Inquiry (AI) methodology with individual interviews. Interview transcripts were analyzed iteratively for emerging themes and used to develop "possibility statements" to frame discussion in subsequent focus groups. A conceptual framework emerged to describe the "destiny" state as per AI methods. SettingFamily physicians, palliative home care providers, patients and bereaved caregivers were recruited in the urban and surrounding rural health authority zones of Calgary, Canada. Participants9 females and 9 males FPs (range of practice years 2-42) in interviews; 8 bereaved caregivers, 1 patient, 26 Palliative Home Care team members in focus groups. Interviews and focus groups were recorded digitally and transcribed with consent. ResultsThe identified themes that transcended all three groups created the foundation for the conceptual framework. Enhanced communication and fostering team relationships between all care providers with the focus on the patient and caregivers was the cornerstone concept. The family physician/patient relationship must be protected and encouraged by all care providers, while more system flexibility is needed to respond more effectively to patients. These concepts must exist in the context that patients and caregivers need more education regarding the benefits of palliative care, while increasing public discourse about mortality. ConclusionsKey areas were identified for how the patients team can work together effectively to improve the patient and caregiver palliative care journey in the community with the cornerstone element of building on the trusting FP-patient longitudinal relationship. Strengths and limitations of this studyO_LIThis study uses Appreciative Inquiry qualitative methods to identify the essential components required to best support patients and families with palliative care needs in their communities. C_LIO_LIMultiple perspectives recruited including: community-based family physicians, palliative home care clinicians, patients, and bereaved caregivers. C_LIO_LIAnalysis was focused on the family physicians interviews to derive "possibility statements" and used to frame the focus groups with the other groups of participants. C_LIO_LIGeneralisability may be limited due to the lack of diversity in participants recruited for the patients and bereaved caregivers in terms of ethnicity, age, and gender. C_LIO_LIPatients and caregivers may have been reluctant to volunteer for this study as it involved discussing palliative care. C_LI

20: Unwelcome memento mori or best clinical practice? Community end-of-life anticipatory medication prescribing practice: a mixed methods observational study
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Posted 01 Mar 2021

Unwelcome memento mori or best clinical practice? Community end-of-life anticipatory medication prescribing practice: a mixed methods observational study
659 downloads medRxiv palliative medicine

Ben Bowers, Kristian Pollock, Stephen Barclay

BackgroundAnticipatory medications are injectable drugs prescribed ahead of possible need for administration if distressing symptoms arise in the final days of life. Little is known about how they are prescribed in primary care. AimTo investigate the frequency, timing and recorded circumstances of anticipatory medications prescribing for patients living at home and in residential care. DesignRetrospective mixed methods observational study using General Practitioner and community nursing clinical records. Setting/participants329 deceased adult patients registered with Eleven General Practitioner practices and two associated community nursing services in Hertfordshire and Cambridgeshire, England (30 most recent deaths per practice). Patients died from any cause except trauma, sudden death or suicide, between 4 March 2017 and 25 September 2019. ResultsAnticipatory medications were prescribed for 167/329 (50.8%) of the deceased patients, between 0 and 1212 days before death (median 17 days). The likelihood of prescribing was significantly higher for patients with a recorded preferred place of death (odds ratio [OR] 34; 95% CI 15-77; p < 0.001) and specialist palliative care involvement (OR 7; 95% CI 3-19; p < 0.001). For 66.5% of patients (111/167) anticipatory medications were recorded as being prescribed as part of a single end of-life planning intervention. ConclusionThe variability in the timing of prescriptions highlights the challenges in diagnosing the end-of-life phase and the potential risks of prescribing far in advance of possible need. Patient and family preferences for involvement in anticipatory medications prescribing decision-making and their experiences of care warrant urgent investigation. Summary Box O_TEXTBOXWhat is already known on this topicO_LIThe prescribing of injectable anticipatory medications to provide symptom relief in the last days of life care is recommended and widespread practice in a number of counties. C_LIO_LIThere is limited research concerning the frequency, timing and context of prescriptions. C_LI What this paper addsO_LIHalf (50.8%) of 319 patients whose deaths were potentially predictable deaths were prescribed anticipatory medications, the timing of prescriptions ranging from 0 to 1212 days before death (median 17 days). C_LIO_LIAnticipatory medications were frequently prescribed as standardised drugs and doses, and often as part of a single end-of-life care planning intervention. C_LIO_LIThe extent to which patients and family carers were involved in prescribing decisions was unclear. C_LI Implications for practice, theory or policyO_LIPatient and family preferences for involvement in anticipatory medications prescribing decision-making and their experiences of care warrant urgent investigation. C_LIO_LIThe presence of anticipatory medications for long periods of time may compromise patient safety unless robust systems are in place to review their continued appropriateness and safe use. C_LI C_TEXTBOX

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