Dr Rachel Grimaldi, an NHS Anaesthetist describes how the communication tool CARDSMEDIC was developed early in the Covid Pandemic.
More information on this and the article available here
Produced by the EACH Library & Information Service. The bulletin lists new articles, guidelines and books available from the library. For more information email library@each.org.uk or visit our library web pages - www.each.org.uk/library
Monday, 5 October 2020
Poster/Guidance - Talking to relatives: a guide to compassionate phone communication during Covid-19
Staff working in hospices are used to making difficult phone calls to relatives. This one page guide produced by the Palliative Care Team at the West Middlesex Hospital was produced earlier in the year to assist staff making phone calls to families during Covid-10 working in other areas. It's a useful one page guide for newer staff or those wishing to have a reminder of the key elements.
Online Article: Grief During the COVID-19 Pandemic: Considerations for Palliative Care Providers
Published in July of this year, this US paper discusses the COVID-19 pandemic and the anticipatory grief, disenfranchised grief, and complicated grief experienced by individuals, families, and their providers. It looks at how to counter the grief through communication, advance care planning, and self-care practices. Resources for health care providers are provided along with a request to palliative care providers to consider their own role as a resource to other specialties during this public health emergency.
Wallace, C. L. et al. 2020. Grief during the Covid-19 pandemic: considerations for Palliative Care Providers. Journal of Pain and Symptom Management, 60 (1) p e70 - e76.
Online Article: The role and response of primary healthcare services in the delivery of palliative care in epidemics and pandemics
Only five studies met the criteria in this UK study, highlighting a striking lack of evidence base for the response of primary healthcare services in palliative care during epidemics and pandemics. Findings were synthesised using a pandemic response framework according to ‘systems’ (community providers feeling disadvantaged in terms of receiving timely information and protocols), ‘space’ (recognised need for more care in the community), ‘staff’ (training needs and resilience) and ‘stuff’ (other aspects of managing care in pandemics including personal protective equipment, cleaning care settings and access to investigations). As the COVID-19 pandemic continues, the authors concluded there is an urgent need to increase understanding of the role of primary care and community nursing services in palliative care, alongside hospices and community specialist palliative care providers.
Mitchell, S. et al 2020. The role and response of primary healthcare services in the delivery of palliative care in epidemics and pandemics: A rapid review to inform practice and service delivery during the
COVID-19 pandemic. Palliative Medicine, 34 (9) p 1182-1192
COVID-19 pandemic. Palliative Medicine, 34 (9) p 1182-1192
Contact the library for a copy.
Short Videos: Hoping for the best - planning for the worst....
While we should always hope for the best, it is wise to prepare for the worst. In these 6 short videos, Dr Justin Amery, a specialist in palliative care talks honestly, reassuringly and practically about this, to give people the best chance of getting the care they wish for at the place they wish for at end life. The talks include What symptoms will I get; Some facts and figures; Talking about death and dying; Planning ahead to get the care you want; and Having conversations with others.
View videos here
Article: What palliative care can learn from the Covid-19 pandemic
The authors reflect on the things palliative care can learn from the Covid-19 pandemic and their experiences at St Christopher's Hospice London. Topics include the changing way of working, the changes to healthcare workers personal and professional lives and the importance of online communications and connecting with patients, families and carers.
Kelly D. & Doods, N. 2020. What palliative care can learn from the Covid-19 pandemic. International Journal of Palliative Nursing, August 26 (2) p 261-262.
Contact the library for a copy
Web site: Swansong - writing songs with people at end of life
The SwanSong Project is a charity that helps people facing end of life or bereavement to write and record their own original songs. Since the beginning of Covid, they've developed ways to support this work virtually and they are now offering this opportunity nationally.
See more at their website
Guidance: What you can do to practically care for someone who is in their last days and hours of life
This End of life Care toolkit has been produced for carers providing care and support for someone dying at home. The information is very clear and well written to ensure carers are aware of what to expect and how they can make the experience for their loved one as comfortable as possible.
The toolkits have been created specifically for other organisations to use and build upon the toolkit non-commercially but must acknowledge the original source.
Download guidance here
Web site: Carer administration of as-needed subcutaneous medication
Seriously ill people often want to spend their last few days of life at home being cared for by family and friends. This web site details how carers, who are looking after a very ill person at home can be taught to give extra (top-up) doses of medication when experiencing "breakthrough" symptoms not controlled by their regular medication. This information and web site should only be used by carers who have been identified and assessed as suitable by healthcare teams.
View web site
Guidance: Special edition of Care After Death - Registered Nurse verification of expected adult death - 3rd edition
Published in June 2020, the aim of this guidance is to provide a framework for the timely verification of expected death. It was reviewed and updated by Hospice UK in response to the Covid-19 outbreak and the need for clarity.
Article: The roles, responsibilities and practices of healthcare assistants in out-of-hours community palliative care: A systematic scoping review
This study, carried out in Northern Ireland searched the literature to understand more of the role of healthcare assistants (HCA's) in community out of hours palliative care. Only 6 papers were identified. Findings from the study highlighted a lack of previous research in relation to the role and contribution of HCA's, evidence that they play an integral role in the delivery of end of life care, and their role is currently hidden and undervalued.
The roles, responsibilities and practices of healthcare assistants in out-of-hours community palliative care: A systematic scoping review. Palliative Medicine, 34 (8) p 976-988.
Contact the library for a copy
Online Article: "Take more laxatives was their answer to everything"
This research took place across three regions in the UK and consisted of 6 focus groups with 27 healthcare professionals working in specialist palliative care units. Thirteen patients and five families participated.
The study found constipation impacted physically, psychologically and socially on patients and families who felt healthcare staff relegated it on the list of importance. Comparatively healthcare staff saw constipation solely as a physical symptom. Healthcare staff reported embarrassment as a barrier to communicating about bowel care, whereas patients wanted staff to initiate communication and discuss constipation openly. A number of recommendations are made from the study.
Hasson, F. et al. 2020 ‘Take more laxatives was their answer to everything’: A qualitative exploration of the patient, carer and healthcare professional experience of constipation in specialist palliative care. Palliative Medicine, 34 (8) p 1057 - 1066.
Article: Medication use in the last year of life: a cross-sectional hospice study
The objectives of this UK study were to: (1) explore medication use among people with life limiting illness receiving hospice care; (2) apply consensus criteria to assess medication appropriateness; and (3) determine the overall pill burden in this patient population. Six UK hospices in the North- East of England took part. They found polypharmacy is common in patients accessing hospice care, as is the use of questionable medication. The pill burden was also high which may be an additional treatment burden to patients. They concluded holistic deprescribing approaches should be developed and implemented.
Scullion, L. et al. 2020. Medication use in the last year of life: a cross-sectional hospice study. BMJ Supportive and Palliative Care.
Contact the library for a copy
Article: Living and dying with cystic fibrosis
This article provides a very good overview of the current symptom prevalence and management of cystic fibrosis, and prognosis. It discusses the importance of advance care planning and notes that end of life care, and support for families who have been bereaved is an area requiring further research and support.
Miller, M. 2020. Living and dying with cystic fibrosis. BMJ Supportive & Palliative Care, online
Contact the library for a copy
Article: Opioids for breathlessness
Chronic breathlessness is a disabling and distressing condition for which there is a growing evidence base for a range of interventions. Non-pharmacological interventions are the mainstay of management and should be optimized prior to use of opioid medication. Opioids are being implemented variably in practice for chronic breathlessness. This narrative review summarises the evidence defining current opioids for breathlessness best practice and identifies remaining research gaps.
Johnson, M.J. & Currow D. C. 2020. Opioids for breathlessness: a narrative review. BMJ Supportive & Palliative Care. 10 (3) p 287 - 295.
Contact the library for a copy
Article: Frailty and palliative care
People with frailty have physical, psychosocial and support needs amenable to palliative care interventions but studies reveal they are less likely to access palliative care than those with advanced cancer. This article looks at why palliative care is relevant to patients with frailty, and what hinders them receiving it.
Hamaker, M. et al. Frailty and palliative care. Frailty and palliative care BMJ Supportive and Palliative Care, 2020.
Contact the library for a copy
Article: Pain, physical symptoms and functional assessment in progressive neurological disease in palliative care
The aim of the research was to identify the most frequent symptoms of patients with progressive neurological disease (PND) in relation to their functional state. It then aimed to see if an intervention in the form of consultations with a multidisciplinary palliative care team decreased the symptom burden, disease progression and functional state. Patients were allocated to either the intervention group or control group. Pain and fatigue were identified as the symptoms that troubled the patients most. After the intervention, there was a statistically significant improvement in the evaluation of 9 out of 11 symptoms (except excretion and urination) among the patients from the intervention group compared with the control group
Buzgova, R. et al. 2020. Pain, physical symptoms and functional assessment in progressive neurological disease in palliative care. BMJ Supportive and Palliative Care.
Contact the library for a copy
Sunday, 22 March 2020
Article: The dying parent and dependent children: a nationwide survey of hospice and community palliative care services
This study was carried out to establish the bereavement support provided by UK hospices to families with dependent children before and after a parent's death. 197 hospices were invited to complete a web based survey. 130 hospices responded. Most types of support were provided after, rather than before the death of a parent, with 22% of hospices reporting no formal processes for asking or documenting dependent children. Volunteers were an underused resource before the death of a parent. Four themes characterised the challenges involved: for families these were emotional, practical and social difficulties, and for hospices, funding/resources and staff training and numbers. The study identified a number of areas for development.
Cockle-Hearne, J. 2020. The dying parent and dependent children: a nationwide survey of hospice and community palliative care services. BMJ Supportive & Palliative Care. epub ahead of print. March 9, 2020.
Cockle-Hearne, J. 2020. The dying parent and dependent children: a nationwide survey of hospice and community palliative care services. BMJ Supportive & Palliative Care. epub ahead of print. March 9, 2020.
Contact the library for a copy
Article: Lymphoedema management by independent hospices: a cohort study
Lymphoedema is thought to affect more than 200,000 in the UK, with most cases associated with cancer. Hospices frequently provide a service for lymphoedema. This study, involving 9 hospices in the North East aimed to establish the type and cost of lymphoedema services. 12,965 appointments were attended, equating to a cost of £1.56 million. They concluded independent hospices are providing a specialist lymphoedema service which is high in volume, largely invisible with significant costs. Long term funding from the NHS is important to ensure sustainability,
Brown, A. et al. 2019. Lymphoedema management by independent hospices: a cohort study. BMJ Supported and Palliative Care, 9, 389-396.
Brown, A. et al. 2019. Lymphoedema management by independent hospices: a cohort study. BMJ Supported and Palliative Care, 9, 389-396.
Contact the library for a copy
Article: The effectiveness of aromatherapy, massage and reflexology in people with palliative care needs
The authors carried out a literature search to bring together all the published trials on these treatments in palliative care. 22 trials were identified. Unfortunately many of the trials were small and most of the treatments when compared to another therapy were inconclusive. There was some evidence however that reflexology reduced pain.
Candy, B. 2020. The effectiveness of aromatherapy, massage and reflexology in people with palliative care needs: a systematic review. Palliative Medicine, 34 (2) p 179-194
Available to download
Candy, B. 2020. The effectiveness of aromatherapy, massage and reflexology in people with palliative care needs: a systematic review. Palliative Medicine, 34 (2) p 179-194
Available to download
Article: Protecting the wellbeing of nurses providing end of life care
Written particularly for nurses providing end of life care in hospital, the article discusses issues around work-related stress in delivering high quality end of life care. It looks at what staff and organisations can do to manage stress and avoid burnout including coping strategies, resilience training, self-care, mindfulness, Schwartz rounds and a supportive organisational culture, all of which are essential to support staff.
Cedar, S. H & Walker, G. 2020. Protecting the wellbeing of nurses providing end of life care. Nursing Times, 226 (2) p 30 - 34.
Cedar, S. H & Walker, G. 2020. Protecting the wellbeing of nurses providing end of life care. Nursing Times, 226 (2) p 30 - 34.
Contact the library for a copy
Article Palliative care needs in Parkinson's disease: focus on anticipatory grief in family carers
This Irish study looked at the occurrence of anticipatory grief in family carers and how this grief related to caregiver burden and depression. 29 family carers completed a survey, a depression scale and anticipatory grief scale. The study found anticipatory grief was common among carers, particularly those who considered either themselves and/or loved one as depressed. The authors concluded that to improve carer outcomes, the focus of support should include the period before and after the death of a loved one and carers should receive regular psychological assessment and support.
Fox, S. et al. 2020. Palliative care needs in Parkinson's disease: focus on anticipatory grief in family carers. Annals of Palliative Medicine, 9 (Suppl 1) p S34
Download here or contact the library for a copy
Fox, S. et al. 2020. Palliative care needs in Parkinson's disease: focus on anticipatory grief in family carers. Annals of Palliative Medicine, 9 (Suppl 1) p S34
Download here or contact the library for a copy
Article: Palliative care for chronic respiratory disease: integrated care in outpatient settings
Chronic respiratory diseases are progressive and often life-limiting illnesses, however there is often a lack of awareness that patients may be entering the final year of their life requiring palliative care services. The Royal Wolverhampton NHS Trust in partnership with Compton Care have established multidisciplinary team meetings combining respiratory and palliative care outpatient clinics to address these issues. This article presents the impact of this service, now in to its fourth year, of delivering palliative care services to patients with chronic respiratory disease.
Huntley, C. et al. 2020. Palliative care for chronic respiratory disease: integrated care in outpatient settings. British Journal of Community Nursing, 25 (3) p132-138.
Contact the library for a copy
Huntley, C. et al. 2020. Palliative care for chronic respiratory disease: integrated care in outpatient settings. British Journal of Community Nursing, 25 (3) p132-138.
Contact the library for a copy
Guidance: Talking about sex, sexuality and relationships
Adult hospices in the UK are increasingly working with children's hospices providing support to young people who have transitioned from children's to adult services. This guidance provides information about how best to support young people, and their families, in addressing sexuality, sexuality expression, relationships and intimacy. It's not a comprehensive ‘how to’ guide but aims to highlight some of the key issues that may arise and build confidence in staff who work with young people.
Open University, 2019. Talking about sex, sexuality and relationships. 3rd edition.
Download here or contact the library for a copy
Open University, 2019. Talking about sex, sexuality and relationships. 3rd edition.
Download here or contact the library for a copy
Interactive web site: Let's talk about sex, intimacy and relationships with a life-limiting condition
This interactive web site from the Open University pulls together a number interviews from young people with life-limiting or life-threatening conditions talking to each other about sex, privacy and relationships. It also includes 9 top tips to help young people start talking about this topic.
Article: Bitesized teaching sessions to increase physical health knowledge
Finding staff time for education and training can be difficult. This one page article describes bitesized teaching sessions delivered in the clinical environment which provides staff with an opportunity to refresh their knowledge and identify their own learning needs
Thompson, S. 2020. Bitesized teaching sessions to increase physical health knowledge. Nursing Times, 116 (2) p 29.
Thompson, S. 2020. Bitesized teaching sessions to increase physical health knowledge. Nursing Times, 116 (2) p 29.
Contact the library for a copy
Article: Life is for living: the contribution of the arts and gardens
Quality of life and life enrichment are important throughout the lifespan and no less during ill-health or later life. The role of the arts and gardens and their potential benefits are not prominent within healthcare practice. This paper outlines the evidence reported in two literature reviews, one addressing the arts and the other focusing on gardens and gardening so that district nurses can understand what art-based and gardening opportunities they may offer their clients and their carers.
While, A. E. 2020. Life is for living: the contribution of the arts and gardens. British Journal of Nursing, 25 (3) p 140-143.
While, A. E. 2020. Life is for living: the contribution of the arts and gardens. British Journal of Nursing, 25 (3) p 140-143.
Contact the library for a copy
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