Digital health technology in palliative care: friend or foe?

Progress in Palliative Care, 2019 27(4) p.145-146

Mills, Jason

In this editorial, Jason Mills considers whether, when it comes to health and promoting quality of life in palliative care settings, there's a meaningful role for technology—and is the use of technology in contexts of life-limiting illness truly congruent with the humanistic tenets of hospice and palliative care?

Fulltext available in Progress in Palliative Care

Quality improvement in hospice settings: perceptions of leaders

International Journal of Health Care Quality Assurance, 2019 32(7) p.1098-1112

Jitendra Singh, Brandi Sillerud, Marah Omar

The purpose of this paper is to explore and examine attitudes and perceptions of leaders on application of quality improvement (QI) strategies in a palliative and hospice care organization using qualitative research methodology. Data analysis suggests that use of QI approach in palliative and hospice care enhances the quality of care provided for patients and can help improve patient satisfaction. This research can provide useful practical tips to leaders as they work on implementing QI projects in their organization.

Top ten tips palliative care clinicians should know about telepalliative care

Journal of Palliative Medicine 2019 22(8) p.981-985

Calton, Brook Anne; Rabow, Michael W.; Branagan, Linda, et al

The latest in the 'Top Ten' series, this article looks at the application of telehealth technologies to palliative care and how they may help address important challenges inherent to the specialty, such as geography and clinician staffing. Telepalliative care can take many forms, including, but not limited to, video visits between clinicians and patients, smartphone applications to promote caregiver well-being, and remote patient symptom-monitoring programs. Experts in telehealth and palliative care, provide a review of the current evidence for telepalliative care and potential applications and practical tips for using the technology.

How can activity monitors be used in palliative care patients?

Journal of Palliative Medicine, 2019 22(7) p.830-832

To, Timothy H.M; Currow, David C; Swetenham, et al

Objective measurement of physical activity in palliative care patients is challenging. In this article, the authors highlight their experiences of activity monitoring in palliative care patients as part of a telehealth trial. They highlight the strengths and limitations of activity monitoring in this patient group and potential applications. They conclude that although the advent of consumer technology for activity measurement makes their use seem attractive in palliative clinical settings, there are a number of issues that must be considered, in particular the reason for the activity monitoring and associated limitations in the technology.

The ethics of prioritizing access to palliative care: a qualitative study

American Journal of Hospice & Palliative Medicine, 2019 36(7) p.577-582

Philip, Jennifer; Russell, Bethany; Collins, Anna; Brand, Caroline; Le, Brian; Hudson, Peter; Sundararajan, Vijaya

Semi-structured focus groups and individual interviews were conducted with twenty health professionals working across various disciplines, service types and locations in Victoria, Australia.  This study revealed key ethical decision-making issues associated with prioritizing access to palliative care services. The authors argue that making explicit the processes and influences upon decision-making provides greater transparency that limited resources are allocated in an equitable and reproducible way.

Quality indicators for Palliative Day Services: a modified Delphi study.

Palliative Medicine 2019 33(2) p. 197-205
McCorry, Noleen K.; O'Connor, Sean; Leemans, Kathleen, et al

The aim of this study was to develop and provide the first set of quality indicators that describe and evaluate the quality of Palliative Day Services. The resulting indicators were compiled into a 'toolkit' and tested in five UK Palliative Day Service settings. The result was the identification of 30 indicators which were used in practice testing. The final indicator set comprised 7 structural indicators, 21 process indicators and 2 outcome indicators. The authors suggest that these indicators deliver an appropriate and feasible means to assess, review, and communicate the quality of care, and to identify areas for quality improvement.

What do patients and family-caregivers value from hospice care? A systematic mixed studies review

BMC Palliative Care 2019, 18:18 (Published on: 8 February 2019)
Nicole Marie Hughes, Jane Noyes, Lindsay Eckley and Trystan Pritchard

This is the first review to explore what patients and carers value from hospice care. Findings strengthen the existing evidence base and provide new insights beyond symptom management and health outcomes.  With large disparities in the availability of services, however, the underrepresentation of patients with nonmalignant diseases and the limited evidence base demonstrating adequate support for the social needs of carers, there continues to be considerable gaps. 

Fulltext available in BMC Palliative Care 

Crash course in EPaCCS (Electronic Palliative Care Coordination Systems): 8 years of successes and failures in patient data sharing to learn from

BMJ Supportive & Palliative Care, 2018 8(4), p447-455
Petrova, Mila; Riley, Julia; Abel, Julian; Barclay, Stephen

EPaCCS are England's pre-eminent initiative in enabling advance care planning and improved communication and coordination at the end of life but have been extremely challenging to develop and implement. The authors discuss the current EPaCCS landscape and way forward, summarise key facts concerning the availability, uptake, outcomes and costs of EPaCCS and outline the key challenges and drivers. 

Fulltext available in BMJ Supportive & Palliative Care

Available in print in Arthur Rank Hospice Library, Cambridge

Music therapy in UK palliative and end-of-life care: a service evaluation

BMJ supportive & palliative care; Sep 2018; vol. 8 (no. 3); p. 282-284
Graham-Wisener, Lisa; Watts, Grace; Kirkwood, Jenny; Harrison, Craig; McEwan, Joan; Porter, Sam; Reid, Joanne; McConnell, Tracey Helena

This service evaluation aims to identify the provision, role and perceived impact of UK music therapists in supporting patients receiving palliative and end of life care (PEOLC), their families and health and social care professionals. It was found that although the evidence suggests that provision of music therapy in UK PEOLC settings in the past 10 years has increased, lack of sustainable funding means the role is not consistently accessible in this setting.

How might organisational institutionalism support the challenges of the modern hospice?

International Journal of Health Planning and Management, 2018, 28th June
E. Hodges; S. Read

The authors argue that the external environment within which UK charitable hospice care operates is changing. This paper outlines a number of environmental and influencing factors driving and impacting those changes. A model of institutional change is introduced, explored, and considered from the context of hospice. 

Palliative care for homeless people: a systematic review of the concerns, care needs and preferences, and the barriers and facilitators for providing palliative care

BMC Palliative Care; 2018, 17 (1) 67
Klop, Hanna T; de Veer, Anke J E; van Dongen, Sophie I; Francke, Anneke L; Rietjens, Judith A C; Onwuteaka-Philipsen, Bregje D

This systematic review aims to summarize evidence about the concerns, palliative care needs and preferences of homeless people, as well as barriers and facilitators for delivering high quality palliative care.

Fulltext available in BMC Palliative Care

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

Integrating palliative care into neurology services: what do the professionals say?

BMJ Supportive & Palliative Care, 2018, 8 (1) 41-44
Hepgul, Nilay; Gao, Wei; Evans, Catherine J; et al

Here the authors present survey results describing the current levels of collaboration between neurology and palliative care services and exploring the views of professionals towards a new short-term integrated palliative care service (SIPC).  They suggest their results demonstrate the opportunity to increase collaboration between the services for people with progressive neurological conditions, and the acceptability of SIPC as a model to support this.

Developing design principles for a Virtual Hospice: improving access to care

BMJ Supportive & Palliative Care; Mar 2018; vol. 8 (no. 1); p. 53-57
Taylor, Andrea; French, Tara; Raman, Sneha

This paper presents early-stage design work on a Virtual Hospice to improve access to services provided by Highland Hospice serving a largely remote and rural population in Scotland. A number of themes and barriers to accessing the Hospice's services were identified and, in response, an initial set of seven design principles was developed to improve prioritisation and decision making by ensuring alignment with research insights. It is suggested that this approach could be applied by other hospices facing similar challenges on delivering services in remote and rural settings.

Available in print in Arthur Rank Hospice Library, Cambridge

Barriers to palliative care for people with severe mental illness: exploring the views of clinical staff

European Journal of Palliative Care; Jan 2018; vol. 25 (no. 1); p. 20-25
Jerwood, Jed; Phimister, Diane; Ward, Gillian; Holliday, Nikki; Coad, Jane

The first in a series of articles exploring inequalities in palliative care provision looks at end of life care for people with severe mental health illness.  It considers the challenges and the opportunities for improving high quality, personalised care for all.

Fulltext available in European Journal of Palliative Care (contact library for login details)
Available in print in Arthur Rank Hospice Library, Cambridge

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. 

Hidden losses and ‘forgotten’ suffering: the bereavement experiences of British Romany Gypsies and Travellers

Bereavement Care; Dec 2017; 36(3) p94-102
Rogers, Carol; Greenfields, Margaret

This paper presents a narrative review of the literature illustrated by quotes from a from a recently completed study that examines the bereavement support needs of Gypsies and Travellers and best practice for organisations seeking to support these ‘hard to reach’ populations.

The state of hospice services in England 2014 to 2017

Care Quality Commission, 2017

This report presents the findings from CQC’s initial programme of comprehensive inspections of hospice services.

Hospice care across England has the highest percentage of health and social care services that are rated outstanding (25%), and a further 70% are rated good. However, there is more to be done to make sure that everyone can access high-quality end of life care, as it was noted services to some groups was variable and that the needs of these people were not always considered and understood.

The state of hospice services in England 2014 to 2017 

One year on: the government response to the review of choice in end of life care

Department of Health, 21st September 2017 This report sets out the progress the national end of life care programme board has made in implementing the government’s choice commitment. Access the report here