NHS south of tyne and wear's (SOTW) supportive and palliative care standards for end of life care in primary care

BackgroundLiver disease is the third most common cause of premature death in the UK. The symptoms of terminal liver disease are often difficult to treat, but very few patients see a palliative care specialist and a high proportion die in hospital. Primary care has been identified as a setting where knowledge and awareness of liver disease is poor. Little is known about general practitioners’ (GPs) perceptions of their role in managing end-stage liver disease.ObjectiveTo explore GPs’ experiences and perceptions of how primary care can enhance end-of-life care for patients with liver disease.DesignQualitative interview study, thematic analysis.ParticipantsPurposive sample of 25 GPs from five regions of England.ResultsGPs expressed a desire to be more closely involved in end-of-life care for patients with liver disease but identified a number of factors that constrained their ability to contribute. These fell into three main areas; those relating directly to the condition, (symptom management and the need to combine a palliative care approach with ongoing medical interventions); issues arising from patients’ social circumstances (stigma, social isolation and the social consequences of liver disease) and deficiencies in the organisation and delivery of services. Collaborative working with support from specialist hospital clinicians was regarded as essential, with GPs acknowledging their lack of experience and expertise in this area.ConclusionsEnd-of-life care for patients with liver disease merits attention from both primary and secondary care services. Development of care pathways and equitable access to symptom relief should be a priority.

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The Efficacy of Palliative Care Education and Training in Primary Care Settings: A Scoping Review of the Literature

Innovation in Aging ◽

10.1093/geroni/igaa057.1443 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 446-446

Author(s):

Jessica Hsieh ◽

Raza Mirza ◽

Lynn McDonald ◽

Christopher Klinger

Keyword(s):

Primary Care ◽

Palliative Care ◽

End Of Life ◽

End Of Life Care ◽

Care Service ◽

Education And Training ◽

Life Care ◽

Care Providers ◽

Palliative Care Education ◽

And Training

Abstract Primary care providers play an important role in palliative care service provision. A scoping review of the literature was undertaken in an attempt to gain insight into and awareness of palliative education and training needs in primary care settings. Four scientific databases covering the medical and social science fields were searched, alongside Grey literature. A total of 5,109 hits were generated, leading to 2,875 titles for individual review. Of these, 33 articles were included in the final review. Five major themes were identified: (1) communication skills; (2) knowledge of spiritual/psychosocial needs; (3) pain and symptom management; (4) cultural proficiency; and (5) experience working within interdisciplinary teams. Many primary care practitioners felt inadequately trained in palliative care and felt unprepared to provide the necessary care. Specifically, poor communication between healthcare professionals and patients were found to adversely affect the level of palliative care that is provided. Additionally, practical experience in palliative/end-of-life care was cited as one of the most beneficial methods in helping to improve knowledge about and ability to practice in the field. The majority of articles emphasized the need for education and training programs to enhance the quality of palliative/end-of-life care service provision. Palliative care education appeared to have numerous benefits, including enhancing providers’ knowledge of and attitudes towards this subject, ability to provide palliative/end-of-life care, and self-perception of preparedness. As the landscape of education needs are constantly changing, this review serves as one of the steps in an ongoing evaluation of palliative care providers’ training needs.

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NUrsing Homes End of Life care Program (NUHELP): developing a complex intervention

BMC Palliative Care ◽

10.1186/s12904-021-00788-1 ◽

2021 ◽

Vol 20 (1) ◽

Author(s):

Emilio Mota-Romero ◽

Ana Alejandra Esteban-Burgos ◽

Daniel Puente-Fernández ◽

María Paz García-Caro ◽

Cesar Hueso-Montoro ◽

...

Keyword(s):

Primary Care ◽

Palliative Care ◽

Nursing Home ◽

Nursing Homes ◽

Focus Group ◽

End Of Life ◽

Complex Intervention ◽

End Of Life Care ◽

Care Program ◽

Life Care

Abstract Background Nursing homes are likely to become increasingly important as end-of-life care facilities. Previous studies indicate that individuals residing in these facilities have a high prevalence of end-of-life symptoms and a significant need for palliative care. The aim of this study was to develop an end-of-life care program for nursing homes in Spain based on previous models yet adapted to the specific context and the needs of staff in nursing homes in the country. Methods A descriptive study of a complex intervention procedure was developed. The study consisted of three phases. The first phase was a prospective study assessing self-efficacy in palliative care (using the SEPC scale) and attitudes towards end-of-life care (using the FATCOD-B scale) among nursing home staff before and after the completion of a basic palliative care training program. In the second phase, objectives were selected using the Delphi consensus technique, where nursing home and primary care professionals assessed the relevance, feasibility, and level of attainment of 42 quality standards. In phase 3, interventions were selected for these objectives through two focus group sessions involving nursing home, primary care, and palliative care professionals. Results As a result of the training, an improvement in self-efficacy and attitudes towards end-of-life care was observed. In phase 2, 14 standards were selected and grouped into 5 objectives: to conduct a comprehensive assessment and develop a personalized care plan adapted to the palliative needs detected; to provide information in a clear and accessible way; to request and record advance care directives; to provide early care with respect to loss and grief; to refer patients to a specialized palliative care unit if appropriate, depending on the complexity of the palliative care required. Based on these objectives, the participants in the focus group sessions designed the 22 interventions that make up the program. Conclusions The objectives and interventions of the NUHELP program constitute an end-of-life care program which can be implemented in nursing homes to improve the quality of end-of-life care in these facilities by modifying their clinical practice, organization, and relationship with the health system as well as serving as an example of an effective health intervention program.

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Service change and innovation in community end-of-life care during the COVID-19 pandemic: Qualitative analysis of a nationwide primary care survey

Palliative Medicine ◽

10.1177/02692163211049311 ◽

2021 ◽

pp. 026921632110493

Author(s):

Sarah Mitchell ◽

Madeleine Harrison ◽

Phillip Oliver ◽

Clare Gardiner ◽

Helen Chapman ◽

...

Keyword(s):

Primary Care ◽

Palliative Care ◽

United Kingdom ◽

End Of Life ◽

General Practitioners ◽

End Of Life Care ◽

Life Care ◽

Specialist Palliative Care ◽

Care Services ◽

Palliative Care Services

Background: Primary healthcare teams (general practice and community nursing services) within the United Kingdom provided the majority of community end-of-life care during COVID-19, alongside specialist palliative care services. As international healthcare systems move to a period of restoration following the first phases of the pandemic, the impact of rapidly-implemented service changes and innovations across primary and specialist palliative care services must be understood. Aim: To provide detailed insights and understanding into service changes and innovation that occurred in UK primary care to deliver end-of-life care during the first phase of the COVID-19 pandemic. Design: Cross-sectional online survey. Responses were analysed using descriptive statistics and thematic analysis. Setting/participants: United Kingdom survey of general practitioners and community nurses, circulated via regional and national professional networks. Results: A total of 559 valid responses were received from 387 community nurses, 156 general practitioners and 16 ‘other’. Over a third of respondents ( n = 224; 40.8%) experienced changes in the organisation of their team in order to provide end-of-life care in response to the COVID-19 pandemic. Three qualitative themes were identified: COVID-19 as a catalyst for change in primary palliative care; new opportunities for more responsive and technological ways of working; and pandemic factors that improved and strengthened interprofessional collaboration. Conclusion: Opportunity has arisen to incorporate cross-boundary service changes and innovations, implemented rapidly at the time of crisis, into future service delivery. Future research should focus on which service changes and innovations provide the most benefits, who for and how, within the context of increased patient need and complexity.

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Palliative care for non-cancer conditions in primary care: a time trend analysis in the UK (2009–2014)

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2019-001833 ◽

2020 ◽

pp. bmjspcare-2019-001833 ◽

Cited By ~ 2

Author(s):

Amy Gadoud ◽

Eleanor Kane ◽

Steven Edward Oliver ◽

Miriam J Johnson ◽

Una Macleod ◽

...

Keyword(s):

Heart Failure ◽

Primary Care ◽

Palliative Care ◽

End Of Life ◽

End Of Life Care ◽

Life Care ◽

Primary Care Record ◽

Care Approach ◽

Hospital Deaths ◽

The Uk

ObjectivesWhile guidelines recommend palliative care in non-cancer conditions, this has not been widely implemented. We examined whether the recording of a palliative care approach and the numbers of hospital deaths for deceased patients with heart failure, dementia, chronic obstructive pulmonary disease (COPD) and cancer have changed since the UK End-of-Life Care Strategy was introduced.MethodsWe conducted sequential cross-sectional studies of decedents within the UK’s Clinical Practice Research Datalink and Hospital Episode Statistics. All adults with a primary care record of COPD (n=5426), dementia (n=7339), heart failure (n=6409) or cancer (n=18 668) who died during three 1 year periods (April 2009 to March 2014) were included. Evidence of a palliative care approach was identified from primary care records, and death in hospital from secondary care data.ResultsFrom 2009 to 2014, proportions with a primary care record of palliative care increased for COPD from 13.6% to 21.2%; dementia from 20.9% to 40.7%; and heart failure from 12.6% to 21.2%; but remained substantially lower than for cancer (57.6% to 61.9%). Median days before death of recording improved for COPD (145 to 224) and dementia (44 to 209); but not for heart failure (168.5 to 153) and cancer (123 to 114). Trends in hospital deaths were not consistently downward, although the proportions of patients dying in hospital were lower in the last period compared with the first.ConclusionsRecording of a palliative care approach for non-cancer conditions has increased since the introduction of the UK End-of-Life Care Strategy, but remains inadequate.

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Fatigue and lethargy in palliative care

InnovAiT Education and inspiration for general practice ◽

10.1177/1755738020906846 ◽

2020 ◽

Vol 13 (5) ◽

pp. 268-272

Author(s):

Amarjodh Landa

Keyword(s):

Quality Of Life ◽

Primary Care ◽

Palliative Care ◽

End Of Life ◽

End Of Life Care ◽

Ageing Population ◽

Life Care ◽

Wide Range ◽

Significant Symptom

Fatigue is a particularly vague, yet significant symptom, which is commonly encountered in primary care. It affects a wide range of patients and has many causes. With an ageing population, fatigue is more likely to be multifactorial towards the end of a person’s life, and this can provide challenges in recognition and management. Patients are often incapacitated due to their fatigue and helping to manage it can lead to an improved quality of life. This article aims to briefly summarise the symptoms of fatigue, how to recognise it and the various causes. Current literature on the management of fatigue in end-of-life care, including pharmacological options, is critically reviewed.

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Community end-of-life care during the COVID-19 pandemic: Initial findings of a UK primary care survey

10.1101/2021.02.15.21251756 ◽

2021 ◽

Author(s):

Sarah Mitchell ◽

Phillip Oliver ◽

Clare Gardiner ◽

Helen Chapman ◽

Dena Khan ◽

...

Keyword(s):

Primary Care ◽

Palliative Care ◽

General Practice ◽

End Of Life ◽

General Practitioners ◽

End Of Life Care ◽

Life Care ◽

Face To Face ◽

The Uk ◽

Remote Consultations

AbstractBackgroundThousands 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.AimTo 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 SettingA web-based, UK-wide questionnaire survey circulated via professional general practice and community nursing networks during September and October 2020.MethodResponses were analysed using descriptive statistics and an inductive thematic analysis.ResultsValid 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.ConclusionPrimary 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.How this fits in (4 sentences)This study provides insights into experiences of delivering end-of-life care in the community during the first wave of the COVID-19 pandemic from the perspectives of UK general practitioners (GPs) and community nurses.Services have changed and adapted rapidly to meet increased need in terms of both volume and complexity, with community nurses taking greater responsibility for most areas of palliative care clinical practice, and GPs undertaking more care planning conversations.While GPs and specialist palliative care services conducted more remote consultations, community nurses carried out face-to-face end-of-life care and reported a feeling of isolation.As the pandemic progresses, and the increased need for end-of-life care in the community persists, more effective service models and multi-disciplinary teamwork in primary care are urgently needed.

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Honoring Preferences—The Consistency Between End-of-Life Care and a Veteran’s Goal for Comfort Care

Innovation in Aging ◽

10.1093/geroni/igaa057.2711 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 752-752

Author(s):

Joan Carpenter ◽

Winifred Scott ◽

Mary Ersek ◽

Cari Levy ◽

Jennifer Cohen ◽

...

Keyword(s):

Palliative Care ◽

Logistic Regression ◽

End Of Life ◽

End Of Life Care ◽

Life Care ◽

Multivariate Logistic Regression ◽

Comfort Care ◽

Lower Odds ◽

Medicare Data ◽

Life Sustaining Treatment

Abstract This study examined the alignment between Veterans’ end-of-life care and a Life-Sustaining Treatment (LST) goal “to be comfortable.” It includes Veterans with VA inpatient or community living center stays overlapping July 2018--January 2019, with a LST template documented by January 31, 2019, and who died by April 30, 2019 (N = 18,163). Using VA and Medicare data, we found 80% of decedents with a comfort care goal received hospice and 57% a palliative care consult (compared to 57% and 46%, respectively, of decedents without a comfort care goal). Using multivariate logistic regression, a comfort care goal was associated with significantly lower odds of EOL hospital or ICU use. In the last 30 days of life, Veterans with a comfort care goal had 43% lower odds (AOR 0.57; 95% CI: 0.51, 0.64) of hospitalization and 46% lower odds of ICU use (AOR 0.54; 95% CI: 0.48, 0.61).

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Help Me Understand: Providing Palliative Care to Individuals With Serious Mental Illness

American Journal of Hospice and Palliative Medicine® ◽

10.1177/10499091211010722 ◽

2021 ◽

pp. 104990912110107

Author(s):

Kate L. M. Hinrichs ◽

Cindy B. Woolverton ◽

Jordana L. Meyerson

Keyword(s):

Mental Illness ◽

Palliative Care ◽

End Of Life ◽

Serious Mental Illness ◽

End Of Life Care ◽

Psychosocial Support ◽

Life Care ◽

Case Examples ◽

Increased Risk ◽

Palliative Care Teams

Individuals with serious mental illness (SMI) have shortened life expectancy with increased risk of developing comorbid medical illnesses. They might have difficulty accessing care and can be lost to follow-up due to complex socioeconomic factors, placing them at greater risk of dying from chronic or undiagnosed conditions. This, in combination with stigma associated with SMI, can result in lower quality end-of-life care. Interdisciplinary palliative care teams are in a unique position to lend assistance to those with SMI given their expertise in serious illness communication, values-based care, and psychosocial support. However, palliative care teams might be unfamiliar with the hallmark features of the various SMI diagnoses. Consequently, recognizing and managing exacerbations of SMI while delivering concurrent palliative or end-of-life care can feel challenging. The goal of this narrative review is to describe the benefits of providing palliative care to individuals with SMI with concrete suggestions for communication and use of recovery-oriented language in the treatment of individuals with SMI. The salient features of 3 SMI diagnoses—Bipolar Disorders, Major Depressive Disorder, and Schizophrenia—are outlined through case examples. Recommendations for working with individuals who have SMI and other life-limiting illness are provided, including strategies to effectively manage SMI exacerbations.

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