Article: Families of COVID-19 patients say goodbye on video

This article describes a new tool developed during the Covid pandemic to enable families to say goodbye to a dying relative.  They describe the development of The Video Goodbye Tool, the preparation and use of it with families and the role of healthcare staff in enabling this to happen.

Frydman, J. et al.  Families of COVID-19 Patients Say Goodbye on Video:  A Structured Approach to Virtual End-of-Life Conversations.  Journal of Palliative Medicine,  July 30 2020

 

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Online Article: Virtual visits in palliative care: about time or against the grain

Published earlier this year, two UK hospices looked at the issues relating to virtual visits including clinical issues, ethical, logistical, and relating to the Covid-19 lockdown.    They found a number of areas to help guide longer term service design, but concluded a one size fits all approach was a poor fit.   They concluded virtual visits have great potential but not in any way a complete solution. 

Hawkins, J.P. et al. 2020.  Virtual visits in palliative care: about time or against the grain.  BMJ Supportive & Palliative Care, 10 (3) p 331-336.

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Guidance: Keeping in touch when you can't be with someone who is very ill and might die

This guide by the National Bereavement Alliance has been put together to suggest ways someone can continue to feel close to their loved one, even at a distance.  The ideas are intended to help whether or not there is a hope that they will recover.  It provides ideas for both children and adults. 

Download the guide here

Online Article: Can video consultations replace face-to-face interviews? Palliative medicine and the Covid-19 review?

During the Covid-19 pandemic it became essential to minimise face to face visits, and consider other ways of offering consultations and clinical assessments. The authors of this paper undertook a rapid literature review to identify the highest level of evidence to inform this major change in practice.    They found global evidence supporting video consultations as an effective, acceptable and cost effective method of service. Considerations for organisations include software that is simple to use, reliable, and with the highest level of security for confidentiality along with staff training and administrative support.   They recommend the following of WHO guidance as detailed in their paper.

Can video consultations replace face-to-face interviews?   Palliative medicine and the Covid-19 review?   BMJ Supportive and Palliative Care.  

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Online Article: An audit of end-of-life symptom control in patients with coronavirus disease 2019 (COVID-19) dying in a hospital in the UK

This audit was undertaken at a general hospital in England, covered the 8 weeks from 16 March to 11 May 2020 and included all inpatients with COVID-19 who had an end-of-life care plan (and died).  Sixty-one patients met the audit criteria.  The commonest problem was shortness of breath (57.5%), which was generally controlled with conservative doses of morphine (10–20 mg/24 h via a syringe pump). Cough and audible respiratory secretions were relatively uncommon. The second most common problem was agitation/delirium (55.5%), which was generally controlled with standard pharmacological interventions. The cumulative number of patients with shortness of breath, agitation and audible respiratory secretions increased over the last 72 h of life, but most patients were symptom controlled at the point of death. Conclusion: Patients dying of COVID-19 experience similar end-of-life problems to other groups of patients. Moreover, they generally respond to standard interventions for these end-of-life problems.

Alderman, B. et al. 2020.  An audit of end-of-life symptom  control in patients with coronavirus disease 2019 (COVID-19) dying in a hospital in the UK.  Palliative Medicine, 34 (9) p 1249 - 1255.

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Online Article: End of life care in Covid-19 - an audit of pharmacological management in hospital patients

Hospital healthcare staff have had to rapidly develop expertise in managing Covid-19 symptoms common at end of life, such as breathlessness and agitation. This UK study aimed to establish whether prescribing for symptom control in patients dying with Covid-19 adhered to existing local guidance.  A retrospective review of the patient records of 61 patients referred to specialist palliative care were included.  Intubated patients were excluded.  Findings showed 83% of patients were prescribed with opioids at a starting dose consistent with local guidelines.   The paper concluded that while some patients may require increased doses, routine prescription of higher starting opioid and benzodiazepine doses beyond local guidelines was not observed

Jackson, T. et al. 2020.  End of life care in Covid-19 - an audit of pharmacological management in hospital patients.  Palliative Medicine, 34 (9) p 1235-1240.

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Online Article: COVID-19 and Hospital Palliative Care - a service evaluation exploring the symptoms and outcomes of 186 patients and the impact of the pandemic on specialist Hospital Palliative Care

This Scottish study aimed to characterise the symptom profile, symptom management requirements and outcomes of hospitalised Covid-19 positive patients referred for palliative care.  It was also aimed to establish how this may differ to a 'typical' palliative care caseload.  Data was captured from the 30th March 2020 - 26th April.   186 patients were included.  Dyspnoea and agitation were the most prevalent symptoms, 75% of patients were prescribed continuous subcutaneous infusion for symptom control, which was effective in 78.6% of patients.  Compared to a 'typical caseload', the COVID-19 cohort were on the caseload for less time and had a higher death rate.

Hetherington, L. et al.  COVID-19 and Hospital Palliative Care - A service evaluation exploring the symptoms and outcomes of 186 patients and the impact of the pandemic on specialist Hospital Palliative Care.  Palliative Medicine, 34 (9) p 1256 - 1262.

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Online Article: Changing patterns of mortality during the Covid-19 pandemic

In the first 10 weeks of the Covid-19 pandemic, the number of people dying in care homes increased by 222% in England and Wales.  The authors of the paper estimate that just over one in five of all Covid-19 deaths occurred among people who might have been in their last year of life in the absence of a pandemic.  The paper discusses the need of health and care systems to be available to provide palliative care to support people with severe Covid-19 particularly in the care home setting.

Bone, A. E., et al. 2020.  Changing patterns of mortality during the Covid-19 pandemic: population-based modelling to understand palliative care implications.  Palliative Medicine, 34 (9) p 1193-1201.

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Online Article : Advance care planning in the community in the context of Covid-19

From the Centre of Evidence-Based Medicine (CEBM) this research looks at the importance of advance care planning (ACP) and presents opportunities to widen access to its benefits.  This rapid review brings together all the current evidence regarding ACP in the community setting, including its implications for Covid-19 and highlights existing guidelines and resources

Selmen, L. et al. August 2020.  Advance care planning in the community in the context of Covid-19.  Centre for Evidence Based Medicine.

View here

Web site: RealTalk - Engaging patients in end of life talk

A very useful resource for those involved in delivering training on end of life communication skills.  Real Talk is a collaboration between Loughborough University, The Loros Hospice Loughborough and Derby University with the aim to enhance the quality and effectiveness of communication skills training in end of life care.  A manual is available to download covering 4 topics: broaching dying; answering how long have I got; answering questions about pain, and using pain scales.   The site also includes other useful resources.

More information on the project can be found here and the specific modules and manual here 

Online Article: A new communication tool to help conversations when staff are wearing PPE

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

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.

Download here or contact the library for a copy

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.

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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

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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.

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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.

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.

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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.

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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.

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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

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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.

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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.

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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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