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.

Download from the Hospice UK web site  or request a copy from the library

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.

Access online here or contact the library for a copy

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.

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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.

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.

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

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.

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

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

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

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.

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.

Contact the library for a copy

Article: Providing dignified continence care to older people at end of life

At end of life, mobility is often compromised and people can experience extreme fatigue.  These factors and others can make it more difficult to maintain continence.  This article aims to enable healthcare staff to understand the problems older people may experience and how to work with the older person and caregivers to develop solutions that maintain dignity and enhance quality of life.

Nazarko, L. 2019.  Providing dignified continence care to older people at end of life. International Journal of Palliative Nursing; Oct 2019; vol. 25 (no. 10); p. 504-512.

Contact the library for a copy

Article: No one should die alone: volunteer support for patients dying in hospital

Demand for palliative care is increasing as the population ages, with half of people dying in hospital.  This article describes how one trust is using end-of-life volunteers, a role developed in partnership with the charity sector, to help ward staff provide high quality care. The model has improved support and care for patients in the last days and hours of their life, especially those who would otherwise be along, and is now being adopted by other hospitals.

Sardar, S. 2019.  No one should die alone: volunteer support for patients dying in hospital. Nursing Times, 115 (12) p 34-36.

Contact the library for a copy

Article: The future is probably now: understanding of illness, uncertainty and end-of-life discussion in older adults with heart failure and family caregivers

This Canadian study explored the understanding of older adults with heart failure and their caregivers. 19 participants took part.  The found participants were knowledgeable about the condition but limited in their understanding of the consequences of the illness.  Participants did not recognise that deterioration in the condition as part of the decline towards end of life and had not engaged in end of life discussions.  The study concluded healthcare professionals need to ensure older adults and caregivers understand the consequences of deterioration and care plans align with their preferences and needs as they advance towards end of life.

Im, J. et al. 2019. 'The Future is Probably Now': Understanding of illness, uncertainty and end-of-life discussions in older adults with heart failure and family caregivers. Health Expectations, 22 (6) p 1331 - 1340.

Available to download

Article: Neuropathic pain in advanced cancer: causes and management

Managing neuropathic pain in patients with advanced cancer can be challenging: it often requires an adjuvant analgesic and what works for one person may not work for another. Pain that is unresponsive to pharmacological approaches may require interventional procedures that are not usual in pain management and requires a multidisciplinary approach. Nurses play a key role in assessing the severity of the pain along with managing treatments.

Perdue, C. 2019. Neuropathic pain in advanced cancer: causes and management. Nursing Times, 115(11) p52-56.

Contact the library for a copy

Article: Infection control: use of disposable gloves and aprons

Disposable gloves and aprons are used to protect health professionals and patients from the risks of infection. However, it is important to use them appropriately or they may increase patients' risk of healthcare-associated infections. This article discusses when and how to use them.

Wigglesworth,N. 2019. Infection control 3: use of disposable gloves and aprons. Nursing Times, 115(7) p34-36

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Article: Infection control: good hand-hygiene practice for hospital patients

This article reviews the evidence on the importance of patient hand hygiene and recommended good practice.  It's accompanied by a poster, which can be photocopied, advising patients when and how to clean their hands.

Chadwick, C. 2019. Infection control 4: good hand-hygiene practice for hospital patients. Nursing Times, 115(9) p27-29.

Contact the library for a copy

Article: Infection control: equipment for facial and respiratory protection

Respiratory and facial protection are used by health professionals when there is a risk of blood or body fluids splashing into the face and eyes or exposure via inhalation.  This article discusses when and how to use the right protective equipment.

Wigglesworth, N. 2019. Infection control 5: equipment for facial and respiratory protection. Nursing Times, 115(10) p30-32.

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Article: Infection control: hand hygiene using soap and water

This article briefly explains the importance of hand hygiene, when it should be performed and which cleansing agent to use; it also outlines the procedure for decontaminating the hands using soap and water and how to protect skin integrity.

Wigglesworth, N. 2019. Infection control 6: hand hygiene using soap and water. Nursing Times, 115 (11) p37-38.

Contact the library for a copy