scholarly journals Integrating palliative care into neurology services: what do the professionals say?

2017 ◽  
Vol 8 (1) ◽  
pp. 41-44 ◽  
Author(s):  
Nilay Hepgul ◽  
Wei Gao ◽  
Catherine J Evans ◽  
Diana Jackson ◽  
Liesbeth M van Vliet ◽  
...  
Keyword(s):  
Palliative Care ◽  
Online Survey ◽  
Professional Groups ◽  
Care Services ◽  
Palliative Care Teams ◽  
Registration Number ◽  
Palliative Care Services ◽  
Survey Results ◽  
Neurological Conditions ◽  
Online Forms

ObjectivesEvaluations of new services for palliative care in non-cancer conditions are few. OPTCARE Neuro is a multicentre trial evaluating the effectiveness of short-term integrated palliative care (SIPC) for progressive long-term neurological conditions. Here, we present survey results describing the current levels of collaboration between neurology and palliative care services and exploring the views of professionals towards the new SIPC service.MethodsNeurology and palliative care teams from six UK trial sites (London, Nottingham, Liverpool, Cardiff, Brighton and Chertsey) were approached via email to complete an online survey. The survey was launched in July 2015 and consisted of multiple choice or open comment questions with responses collected using online forms.Results33 neurology and 26 palliative care professionals responded. Collaborations between the two specialties were reported as being ‘good/excellent’ by 36% of neurology and by 58% of palliative care professionals. However, nearly half (45%) of neurology compared with only 12% of palliative care professionals rated current levels as being ‘poor/none’. Both professional groups felt that the new SIPC service would influence future collaborations for the better. However, they identified a number of barriers for the new SIPC service such as resources and clinician awareness.ConclusionsOur results demonstrate the opportunity to increase collaboration between neurology and palliative care services for people with progressive neurological conditions, and the acceptability of SIPC as a model to support this.Trial registration numberISRCTN18337380; Pre-results.

scholarly journals ‘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)

2020 ◽  
Author(s):  
Lesley Dunleavy ◽  
Nancy Preston ◽  
Sabrina Bajwah ◽  
Andy Bradshaw ◽  
Rachel Cripps ◽  
...  
Keyword(s):  
Palliative Care ◽  
Resource Use ◽  
System Response ◽  
List Type ◽  
Specialist Palliative Care ◽  
It Infrastructure ◽  
Care Services ◽  
Palliative Care Teams ◽  
Palliative Care Services ◽  
Palliative Care Units

AbstractBackgroundSpecialist 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/ISRCTN16561225Key StatementsWhat is already known about the topic?Specialist palliative care is part of a whole healthcare system response to COVID-19.Services need to make practice changes in response to the global pandemic.What this paper addsSpecialist palliative care services responded rapidly to COVID-19 in both planning for change and then adapting to needs and requirements.Services often relied on ‘improvisation’, ‘quick fixes’ and ‘making do’ when responding to the COVID-19 crisis.Implications for practice, theory or policyIn 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.The effectiveness and sustainability of any changes made during the crisis needs further evaluation.

Hospital-Based Palliative Care with Medicare Claims: Evidence From Colorado

2017 ◽  
Vol 35 (1) ◽  
pp. 66-68 ◽  
Author(s):  
Cordt T. Kassner ◽  
Nrupen A. Bhavsar ◽  
Matthew Harker ◽  
Janet Bull ◽  
Donald H. Taylor
Keyword(s):  
Palliative Care ◽  
Medicare Claims ◽  
Care Services ◽  
Medicare Data ◽  
Phone Survey ◽  
Number Of Patients ◽  
Palliative Care Teams ◽  
Palliative Care Services ◽  
Study Setting ◽  
Medicare Claims Data

Background: The prevalence of hospital-based palliative care has been largely anecdotal as an increasing service being provided and there is a need to understand what trends can be analyzed with Medicare data. Objective: To compare 2 methods of identifying hospital-based palliative care in the Medicare population in Colorado. Study Design: Through Medicare claims data and phone surveys, we ascertained the presence of hospital-based palliative care services, number of patients receiving palliative care, and number of care visits provided during the previous year. Data Sources/Study Setting: Data were collected from every Medicare-certified hospital in Colorado during 2008 and 2013. Measurements: We measured the presence of hospital-based palliative care teams and their average number of consultations through a phone survey and cross-referenced using a v-code modifier of Medicare claims indicating a palliative care consult visit. Results: The number of hospital-based palliative care consultations increased five-fold from 2008-2013, and Medicare claims under-counted the number of these consultations compared to phone surveys. Conclusion: The systematic measurement of palliative care nationally is a key priority. More evidence is needed from other states to better understand the usefulness of Medicare claims in this effort.

scholarly journals Where there is no morphine: The challenge and hope of palliative care delivery in Tanzania

2014 ◽  
Vol 6 (1) ◽  
Author(s):  
Kristopher Hartwig ◽  
Mervyn Dean ◽  
Kari Hartwig ◽  
Paul Z. Mmbando ◽  
Abduraoof Sayed ◽  
...  
Keyword(s):  
Palliative Care ◽  
Cancer Patients ◽  
Mixed Method ◽  
Care Delivery ◽  
Oral Morphine ◽  
Psychological Burden ◽  
Care Experience ◽  
Care Services ◽  
Palliative Care Teams ◽  
Palliative Care Services

Background: In Tanzania, a country of 42 million, access to oral morphine is rare.Aim: To demonstrate the effectiveness of palliative care teams in reducing patients’ pain and in increasing other positive life qualities in the absence of morphine; and to document the psychological burden experienced by their clinical providers, trained in morphine delivery, as they observed their patients suffering and in extreme pain.Setting: One hundred and forty-fie cancer patients were included from 13 rural hospitals spread across Tanzania.Method: A mixed method study beginning with a retrospective quantitative analysis of cancer patients who were administered the APCA African POS tool four times. Bivariate analyses of the scores at time one and four were compared across the domains. The qualitative arm included an analysis of interviews with six nurses, each with more than fie years’ palliative care experience and no access to strong opioids.Results: Patients and their family caregivers identifid statistically signifiant (p < 0.001) improvements in all of the domains. Thematic analysis of nurse interviews described the patient and family benefis from palliative care but also their great distress when ‘bad cases’ arose who would likely benefi only from oral morphine.Conclusion: People living with chronic cancer-related pain who receive palliative care experience profound physical, spiritual and emotional benefis even without oral morphine. These results demonstrate the need for continued advocacy to increase the availability of oral morphine in these settings in addition to palliative care services.

scholarly journals ‘Necessity is the mother of invention’: Specialist palliative care service innovation and practice change in response to COVID-19. Results from a multinational survey (CovPall)

2021 ◽  
pp. 026921632110006
Author(s):  
Lesley Dunleavy ◽  
Nancy Preston ◽  
Sabrina Bajwah ◽  
Andy Bradshaw ◽  
Rachel Cripps ◽  
...  
Keyword(s):  
Palliative Care ◽  
Good Practice ◽  
System Response ◽  
Free Text ◽  
Care Providers ◽  
Specialist Palliative Care ◽  
Care Services ◽  
Palliative Care Teams ◽  
Palliative Care Services ◽  
Palliative Care Units

Background: Specialist palliative care services have a key role in a whole system response to COVID-19, a disease caused by the SARS-CoV-2 virus. There is a need to understand service response to share good practice and prepare for future care. Aim: To map and understand specialist palliative care services innovations and practice changes in response to COVID-19. Design: Online survey of specialist palliative care providers (CovPall), 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/participants: Inpatient palliative care units, home nursing services, hospital and home palliative care teams from any country. Results: Four hundred and fifty-eight 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 and funding. Enablers included; collaborative teamwork, staff flexibility, a pre-existing IT infrastructure and strong leadership. Conclusions: Specialist palliative care services have been flexible, highly adaptive and have adopted low-cost solutions, also called ‘frugal innovations’, in response to COVID-19. In addition to financial support, greater collaboration is essential to minimise duplication of effort and optimise resource use. ISRCTN16561225 https://doi.org/10.1186/ISRCTN16561225

scholarly journals Specialist palliative care services response to ethnic minority groups with COVID-19: equal but inequitable—an observational study

2021 ◽  
pp. bmjspcare-2021-003083
Author(s):  
Sabrina Bajwah ◽  
Jonathan Koffman ◽  
Jamilla Hussain ◽  
Andy Bradshaw ◽  
Mevhibe B Hocaoglu ◽  
...  
Keyword(s):  
Palliative Care ◽  
Ethnic Minority ◽  
Online Survey ◽  
Minority Groups ◽  
Categorical Variables ◽  
Free Text ◽  
Ethnic Minority Groups ◽  
Cross Sectional ◽  
Care Services ◽  
Palliative Care Services

ObjectivesTo develop insights into response of palliative care services caring for people from ethnic minority groups during COVID-19.MethodsCross-sectional online survey of UK palliative care services response to COVID-19. Quantitative data were summarised descriptively and χ2 tests used to explore relationships between categorical variables. Free text comments were analysed using reflexive thematic analysis.Results277 UK services responded. 168 included hospice teams (76% of all UK hospice teams). Services supporting those from ethnic minority groups were more likely to include hospital (p<0.001) and less likely to include hospice (p<0.001) or home care teams (p=0.008). 34% (93/277) of services had cared for patients with COVID-19 or families from ethnic minority groups. 66% (61/93) of these services stated no difference in how they supported or reached these groups during the pandemic.Three themes demonstrated impact of policy introduced during the pandemic, including: disproportionate adverse impact of restricted visiting, compounded communication challenges and unmet religious and faith needs. One theme demonstrated mistrust of services by ethnic minority groups, and the final theme demonstrated a focus on equal and individualised care.ConclusionsPolicies introduced during the COVID-19 pandemic may have adversely impacted those from ethnic minority groups making these at-risk populations even more vulnerable. The palliative care response may have been equal but inequitable. During the para-COVID-19 period, systemic steps, including equality impact assessments, are urgently needed.

scholarly journals 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

2021 ◽  
pp. 026921632110633
Author(s):  
Joanne Bayly ◽  
Andy Bradshaw ◽  
Lucy Fettes ◽  
Muhammed Omarjee ◽  
Helena Talbot-Rice ◽  
...  
Keyword(s):  
Palliative Care ◽  
Online Survey ◽  
Rehabilitation Services ◽  
Free Text ◽  
Specialist Palliative Care ◽  
Advanced Illness ◽  
Cross Sectional ◽  
Care Services ◽  
Palliative Care Services ◽  
The Impact

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.

scholarly journals Interstitial lung disease and specialist palliative care access: a healthcare professionals survey

2020 ◽  
pp. bmjspcare-2019-002148
Author(s):  
Jee Whang Kim ◽  
Sandra Olive ◽  
Steve Jones ◽  
Muhunthan Thillai ◽  
Anne-Marie Russell ◽  
...  
Keyword(s):  
Palliative Care ◽  
Interstitial Lung Disease ◽  
Lung Disease ◽  
Healthcare Professionals ◽  
Symptom Control ◽  
Survey Study ◽  
Specialist Palliative Care ◽  
Care Services ◽  
Palliative Care Teams ◽  
Palliative Care Services

BackgroundFibrotic interstitial lung disease is an incurable disease with poor prognosis. We aimed to understand factors affecting decisions regarding referrals to specialist palliative care services and to address barriers and facilitators to referrals from healthcare professionals’ perspectives.MethodsA survey study of healthcare professionals, including respiratory physicians, interstitial lung disease nurse specialists, respiratory nurse specialists and palliative care physicians, was conducted using a questionnaire, entailing 17 questions.ResultsThirty-six respondents, including 15 interstitial lung disease nurse specialists completed the questionnaire. Symptom control, psychological/spiritual support, general deterioration and end-of-life care were the most common reasons for referrals to specialist palliative care services. Most respondents felt confident in addressing palliative care needs and discussing palliative care with patients. A few participants emphasised that experienced respiratory nurse specialists are well placed to provide symptom management and to ensure continuity of patient care. Participants reported that access to palliative care could be improved by increasing collaborative work between respiratory and palliative care teams.ConclusionsMost respondents felt that enhancing access to specialist palliative care services would benefit patients. However, palliative care and respiratory care should not be considered as mutually exclusive and multidisciplinary approach is recommended.

Perceptions of the care received from Australian palliative care services: A caregiver perspective

2017 ◽  
Vol 16 (2) ◽  
pp. 198-208 ◽  
Author(s):  
Tanya M. Pidgeon ◽  
Claire E. Johnson ◽  
Leanne Lester ◽  
David Currow ◽  
Patsy Yates ◽  
...  
Keyword(s):  
Palliative Care ◽  
Information Needs ◽  
Physical Symptoms ◽  
Community Services ◽  
Inpatient Setting ◽  
Practical Training ◽  
Caregiver Support ◽  
Care Services ◽  
Palliative Care Teams ◽  
Palliative Care Services

ABSTRACTBackground:Caregiver satisfaction and experience surveys help health professionals to understand, measure, and improve the quality of care provided for patients and their families.Objective:Our aim was to explore caregiver perceptions of the care received from Australian specialist palliative care services.Method:Caregivers of patients receiving palliative care in services registered with Australia's Palliative Care Outcomes Collaboration were invited to participate in a caregiver survey. The survey included the FAMCARE–2 and four items from the Ongoing Needs Identification: Caregiver Profile questionnaire.Results:Surveys were completed by 1,592 caregivers from 49 services. Most respondents reported high satisfaction and positive experiences. Caregivers receiving care from community-based palliative care teams were less satisfied with the management of physical symptoms and comfort (odds ratio [OR] = 0.29; 95% confidence interval [CI95%] = 0.14, 0.59), with patient psychological care (OR = 0.56; CI95% = 0.32, 0.98), and with family support (OR = 0.52; CI95% = 0.35, 0.77) than caregivers of patients in an inpatient setting. If aged over 60 years, caregivers were less likely to have their information needs met regarding available support services (OR = 0.98; CI95% = 0.97, 0.98) and carer payments (OR = 0.99; CI95% = 0.98, 1.00). Also, caregivers were less likely to receive adequate information about carer payments if located in an outer regional area (OR = 0.41; CI95% = 0.25, 0.64). With practical training, caregivers receiving care from community services reported inadequate information provision to support them in caring for patients (OR = 0.60; CI95% = 0.45, 0.81).Significance of Results:While our study identified caregivers as having positive and satisfactory experiences across all domains of care, there is room for improvement in the delivery of palliative care across symptom management, as well as patient and caregiver support, especially in community settings. Caregiver surveys can facilitate the identification and evaluation of both patients' and caregivers' experiences, satisfaction, distress, and unmet needs.

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