Palliative care strategies offer guidance to clinicians and comfort for COVID-19 patient and families

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Heart & Lung, 2020, vol. 49, no. 3, pp. 227-228

Feder; Akgün; Kathleen M.; Schulman-Green, Dena

The novel coronavirus (COVID-19) has caused a fast-moving, highly distressing global health crisis. Patients of all ages face daunting illness while healthcare systems struggle to meet the growing demand for services. The need for palliative care (PC) is likely to be substantial, and yet, PC specialists are in short supply. This article examines the special considerations in applying core PC principles during the COVID-19 crisis as well as targeted strategies to support patients and families.

The trajectory of functional decline over the last 4 months of life in a palliative care population: a prospective, consecutive cohort study

Palliative Medicine, 2019 33(6) p.693-703

Morgan, Deidre D; Tieman, Jennifer J; Allingham, Samuel F; Ekström, Magnus P; Connolly, Alanna; Currow, David C

Understanding current patterns of functional decline will inform patient care and has health service and resource implications.  Data were collected from 55,954 patients cared for in hospices, hospitals and at home. Changes in functional status were measured using the Australia-modified Karnofsky Performance Status Scale.  Two simplified trajectories of functional decline in the last 4 months of life were identified for five patient cohorts. Both trajectories present opportunities to plan for responsive healthcare that will support patients and families.

Fulltext available in Palliative Medicine 

Imminent death: clinician certainty and accuracy of prognostic predictions

BMJ Supportive & Palliative Care, 2019, May 10

Nicola White, Fiona Reid, Victoria Vickerstaff, Priscilla Harries, Christopher Tomlinson, Patrick Stone

The results of this study show that even when doctors are very (>90%) confident that a patient will die within the next 72 hours, these estimates are only correct on 75% of occasions. It is therefore important for clinicians to convey this level of uncertainty in their communications with patients and relatives. This suggests that while clinical predictions will continue to have a role for routine prognostication, other approaches (such as the use of prognostic scores) may be required for those cases where doctors’ estimates are indeterminate.

Fulltext available in BMJ Supportive and Palliative Care 

Dying in long-term care: perspectives from sexual and gender minority older adults about their fears and hopes for end of life

Journal of Social Work in End-of-Life & Palliative Care, Nov 2018 ; p. 1-16
Kortes-Miller, Katherine; Boulé, Jessica; Wilson, Kimberley; Stinchcombe, Arne

This qualitative study from Canada explored the hopes and fears of older LGBTQ + adults considering long-term care as they face end of life. Fears included social isolation, decreased independence and capacity for decision-making, increased vulnerability to LGBTQ+-related stigma as well as exposure to unsafe social and physical environments. The authors conclude there is a need for palliative care specialists and long-term care home staff to address the unique health needs of older LGBTQ + adults nearing the end of life in order to create supportive and inclusive long-term care environments.

What role do death doulas play in end-of-life care? A systematic review

Health and Social Care in the Community, 2018, September 26th

Deb Rawlings; Jennifer Tieman; Lauren Miller-Lewis; Kate Swetenham

A systematic review was conducted to explore the role and potential implications for models of care delivery. Included were articles that describe the role/work of a death doula or a death midwife in the context of end-of-life care, or death and dying. 

Fulltext available in Health and Social Care in the Community

Hope tree: an interactive art installation to facilitate the expression of hope in a hospice setting

American Journal of Hospice & Palliative Medicine, 2018 35(10) p.1273-1279
Collins, Andrew; Bhathal, Darpanjot; Field, Tara; Larlee, Randene; Paje, Rachael; Young, Daneen

Patients can continue to have hope or be hopeful, even in the face of a terminal illness. In this paper the authors address the question 'Can participation in a creative writing practice improve the expression of hope in a hospice setting?' Each expressed hope placed on the "Hope Tree" was independently coded by all research team members utilizing inductive content analysis. Eight major themes emerged from the data: "Peace," "Dreams," "Total well-being," "Acknowledgment of loss," "Relationships," "Hospice care," "Spirituality," and "Dichotomies." It was concluded that the Hope Tree is a creative art project that can be used within a hospice environment to promote hope among family members and the health-care professionals who care for patients.

A retrospective medical records review of risk factors for the development of respiratory tract secretions (death rattle) in the dying patient

Journal of Advanced Nursing, 2018 74(7)  p1639-1648
Kolb, Hildegard; Snowden, Austyn; Stevens, Elaine; Atherton, Iain

The identification of risk factors for the development of death rattle would allow for targeted interventions.  Two hundred consecutive medical records of mainly cancer patients who died in a hospice inpatient setting between 2009-2011 were reviewed. Fifteen potential risk factors were investigated.  The authors conclude that dying patients with a requirement for a high dose of Midazolam have an increased likelihood of developing death rattle.

End of life care: a briefing paper

Institute of Public Policy Research, 2018

This briefing paper provides a brief summary of issues around end of life care, including an overview of evidence regarding the impact of location on quality and cost of care. It analyses the data on location and cost of care in England and how it compares at a national and international level. It also provides an analysis of the policy agenda in the UK and suggests key areas where improvements should be made.

Download from the IPPR website 

Providing comprehensive, person-centered assessment and support for family carers towards the end of life

Hospice UK, April 2018
Ewing, Gail; Grande, Gunn

A report that discusses that comprehensive person-centered support for family carers during end of life care requires whole-systems change within healthcare organisations. This document outlines the structures and processes that need to be in place to deliver such change in the form of 10 recommendations.

To download the document click here

Persistent inequalities in Hospice at Home provision

BMJ Supportive & Palliative Care; February 2018
Buck, Jackie; Webb, Liz; Moth, Lorraine; Morgan, Lynn; Barclay, Stephen

The aim of this study was to describe the nature and scope of a new Hospice at Home (H@H) service and to identify its equality of provision.  Results showed that demand outstripped supply with twice as many night care episodes requested as were provided. Inequalities in access to the service related to underlying diagnosis and socioeconomic status.  The authors conclude that there is significant unmet need and potentially large latent demand for the H@H service. 

Fulltext available in BMJ Supportive and Palliative Care
Available in print in Arthur Rank Hospice Library, Cambridge

Deactivation of implantable cardioverter-defibrillators in heart failure: a systematic review

Journal of Hospice and Palliative Nursing; Feb 2018; vol. 20 (no. 1); p. 63-73
Herman, Mark; Horner, Kathryn; Ly, Julie; Vayl, Yelizaveta

The aim of this systematic review was to identify problems that may delay the deactivation of implantable cardioverter-defibrillators and address possible considerations for their management to improve end-of-life care.  The authors conclude that ongoing discussions with patients are needed as well as the development of a protocol or policy to guide care at the end of life.

A second class ending: Exploring the barriers and championing outstanding end of life care for people who are homeless (discussion paper)

Care Quality Commission and Faculty for Homeless and Inclusion Health, November 2017

This paper explores the reasons why homeless people do not experience good care at the end of life and demonstrates that there are many opportunities to improve standards of care.

Fulltext available here

End-of-life care for homeless people: A qualitative analysis exploring the challenges to access and provision of palliative care

Palliative Medicine; 2018 32(1) p. 36-45
Shulman, Caroline; Hudson, Briony F; Low, Joseph; Hewett, Nigel; Daley, Julian; Kennedy, Peter; Davis, Sarah; Brophy, Niamh; Howard, Diana; Vivat, Bella; Stone, Patrick

The aim of this study was to explore the views and experiences of current and formerly homeless people, frontline homelessness staff (from hostels, day centres and outreach teams) and health- and social-care providers, about the challenges of supporting homeless people with advanced ill health, and to make suggestions for improving care.  It highlights the complexities of identifying who is palliative and the lack of appropriate services for homeless people who have high support needs, particularly in combination with substance misuse issues. Recommendation include increased collaboration between services, the promotion of in-reach into hostels and greater training and support for all professional groups. 

Psychological ideas in palliative care: behaviour change

European Journal of Palliative Care; 2017 24(6) p. 260-265
Strachan, Jenny

There is little written about behaviour change in palliative care settings. In this article Jenny Strachan examines how encouraging patients to change certain types of behaviour – such as non-compliance with medicines, persistent reassurance seeking and strain in family relationships – comes down to understanding and adjusting the relationship between the behaviour and its reinforcers.

Fulltext available in European Journal of Palliative Care
Available in print in Arthur Rank Hospice Library, Cambridge

Palliative care for people with dementia in the terminal phase: a mixed-methods qualitative study to inform service development

BMC Palliative Care, 28th April 2017
Jenny T. van der Steen, Natashe Lemos Dekker, Marie-José H. E. Gijsberts, Laura H. Vermeulen, Margje M. Mahler and B. Anne-Mei The

The aim of this article was to understand what needs to be in place to develop optimal palliative care services for the terminal phase of dementia (so at the end of life, but not necessarily with advanced dementia), drawing on empirical evidence, experiential knowledge and case studies of service provision.

Fulltext available in  BMC Palliative Care

'Dignity therapy', a promising intervention in palliative care: A comprehensive systematic literature review

Palliative Medicine, 2016, August 26th

Marina Martínez, María Arantzamendi, Alazne Belar, José Miguel Carrasco, Ana Carvajal, María Rullán, Carlos Centeno

Dignity therapy is psychotherapy to relieve psychological and existential distress in patients at the end of life.  The evidence from this review suggests that dignity therapy is beneficial. One randomized controlled trial with patients with high levels of psychological distress shows DT efficacy in anxiety and depression scores. Other design studies report beneficial outcomes in terms of end-of-life experience. Further research should understand how dignity therapy functions to establish a means for measuring its impact and assessing whether high level of distress patients can benefit most from this therapy.

  

Full text available in Palliative Medicine

Available in print in Arthur Rank Hospice Library, Brookfields Hospital

Inpatient transfer to a care home for end-of-life care: What are the views and experiences of patients and their relatives? A systematic review and narrative synthesis of the UK literature

Palliative Medicine 2016 July 28

Tabitha Thomas, Isla Kuhn, Stephen Barclay

Transfers from hospital or 'hospice palliative care units' to care homes for end-of-life care are an increasingly common part of clinical practice but are a source of anxiety and distress for patients, relatives and healthcare professionals. This review revealed that the UK literature concerning patient transfers to care homes is very limited. Further research is urgently needed in this area, especially studies of patients themselves, in order to understand their experiences and views.

Fulltext available in Palliative Medicine

Considering the impact of stigma on lesbian, gay and bisexual people receiving palliative and end-of-life care

International Journal of Palliative Nursing, Jul 2016, vol. 22, no. 7, p. 334-340

Chidiac, Claude, Connolly, Michael

Stigma can have a negative effect on health and wellbeing and can influence the type of care received from health and social care professionals, including those working in palliative care. This paper presents a discussion of the impact that stigma has on LGB people who access and receive palliative and end-of-life care.

Available in print in Arthur Rank Hospice Library, Brookfields Hospital

Cardiovascular implanted electronic devices in people towards the end of life, during cardiopulmonary resuscitation and after death: guidance from the Resuscitation Council (UK), British Cardiovascular Society and National Council for Palliative Care

Heart. 2016 June;102 (Suppl 7) A1-A17
David Pitcher, Jasmeet Soar, Karen Hogg, et al

This document has been developed to provide guidance for all healthcare professionals who may encounter people with CIEDs in the situations described and for healthcare managers and commissioners. Its aim is to:

• Help to ensure that people who have CIEDs, or are considering implantation of one, receive explanation of and understand the practical implications and decisions that this entails
• Promote a good standard of care and service provision for people in the UK with CIEDs in the circumstances described
• Offer relevant ethical and legal guidance on this topic
• Offer guidance on the delivery of services in relation to deactivation of CIEDs where appropriate
• Offer guidance on whether any special measures are needed when a person with a CIED receives cardiopulmonary resuscitation
• Offer guidance on the actions needed when a person with a CIED dies
• 
  

Fulltext available in HEART

Barriers and facilitators to end-of-life communication in advanced chronic organ failure

International Journal of Palliative Nursing, May 2016, vol. 22, no. 5, p. 222-229

Van den Heuvel, Liza Amc, Spruit, Martijn A, Schols, Jos Mga, Hoving, Ciska, Wouters, Emiel Fm, Janssen, Daisy Ja

The results of this quantitative, cross-sectional study suggest that the most important barriers for family caregivers were related to uncertainty about expected care and focus on staying alive instead of dying. The facilitators were related to trust in and competence of their physician and earlier experiences with death in their (social) environment. For most barriers and facilitators, agreement between patients and family caregivers was fair to moderate, suggesting an individual approach is needed to improve communication at the end of life.

Available in print in Arthur Rank Hospice, Brookfields Hospital