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.

Palliative care for people with dementia living at home: A systematic review of interventions

Palliative Medicine, 2019 33(7) p.726-742

Miranda, Rose; Bunn, Frances; Lynch, Jennifer; Van den Block, Lieve; Goodman, Claire

The aim of this review was to examine evidence on home palliative care interventions in dementia, in terms of their effectiveness on end-of-life care outcomes, factors influencing implementation, the extent to which they address the European Association for Palliative Care palliative care domains and evidence gaps. The evidence, albeit of generally weak quality, showed the potential benefits of the interventions in improving end-of-life care outcomes, for example, behavioural disturbances. The interventions most commonly focused on optimal symptom management, continuity of care and psychosocial support. 

Fulltext available in Palliative Medicine

Palliative care for people with dementia living at home: a systematic review of interventions

Palliative Medicine, 2019 33(7) p.726-42
Rose Miranda, Frances Bunn, Jennifer Lynch, et al 

The aim of this review was to examine evidence on home palliative care interventions in dementia, in terms of their effectiveness on end-of-life care outcomes, factors influencing implementation, the extent to which they address the European Association for Palliative Care palliative care domains and evidence gaps.

None of the evidence found was of high quality.  However, it showed the potential benefits of the interventions in improving end-of-life care outcomes, for example, behavioural disturbances. The interventions most commonly focused on optimal symptom management, continuity of care and psychosocial support.  No direct evidence on facilitators and barriers to implementation was found.

Fulltext available in Palliative Medicine

Anticipatory prescribing of injectable medications for adults at the end of life in the community: a systematic literature review and narrative synthesis

Palliative Medicine 2019 33(2) p. 160-177
Bowers, Ben; Ryan, Richella; Kuhn, Isla; Barclay, Stephen

The anticipatory prescribing of injectable medications to provide end-of-life symptom relief is an established community practice in a number of countries. However, current anticipatory prescribing practice and policy is based on an inadequate evidence base. The authors conclude that the views and experiences of patients and their family carers towards anticipatory prescribing need urgent investigation and that further research is needed to investigate the impact of anticipatory prescribing on patients' symptoms and comfort, patient safety, and hospital admissions.

Managing medicines for patients dying at home: a review of family caregivers' experiences

Journal of Pain and Symptom Management, September 2018
Wilson, Eleanor; Caswell, Glenys; Turner, Nicola; Pollock, Kristian

The aim of the article is to explore the literature focused on family caregivers' experiences of medications management for patients being cared for and dying at home.  The authors concluded that as increasing demands are placed on family caregivers, there remains limited acknowledgement or understanding of the challenges they face, how they cope, or could be best supported. Alongside training, family caregivers need access to 24hrs support and medication reviews to rationalise unnecessary medications.  The ethical challenges arising from administering medicines at the end of life also need to be acknowledged and discussed.

Fulltext available in Journal of Pain and Symptom Management

The nourishing role: exploratory qualitative research revealing unmet support needs in family carers of patients with advanced cancer and eating problems

Cancer Nursing; Mar 2018; vol. 41 (no. 2); p. 131-138
Hopkinson, Jane B

This study revealed that family carers needed information and support not only on how to provide nutritional care for the patients but also to manage their own nutritional risk.

“Unexpected and distressing": understanding and improving the experience of transferring palliative care inpatients to residential care.

Journal of Social Work in End-of-life & Palliative Care 2017, June 1, pp1-12

Voula Kallianis, Lynette Joubert, Sue Gorman, Sonia Posenelli, Carolyn Lethborg

The authors researched the effects on patients, families and the multidisciplinary healthcare team of transition from a specialist palliative care facility to residential care, identified the barriers relating to the move and highlighted opportunities to improve clinical practice in this area.

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

Hospital at home: home-based end-of-life care

Cochrane Database of Systematic Reviews, Online Publication Date: February 2016 

Sasha Shepperd, Daniela C Gonçalves-Bradley, Sharon E Straus, Bee Wee

The evidence included in this review supports the use of home-based end-of-life care programmes for increasing the number of people who will die at home, although the numbers of people admitted to hospital while receiving end-of-life care should be monitored. Future research should systematically assess the impact of home-based end-of-life care on caregivers.

Fulltext available here

Development of the Carers' Alert Thermometer (CAT) to identify family carers struggling with caring for someone dying at home: a mixed method consensus study

BMC palliative care, Jan 2015, vol. 14, p. 22

Knighting, Katherine, O'Brien, Mary R, Roe, Brenda, Gandy, Rob, Lloyd-Williams, Mari, Nolan, Mike, Jack, Barbara A

The aim of the study was to explore what professionals and carers of patients with cancer and advanced progressive illness, in their last year of life, find burdensome and to develop an alert system for use by non-specialist staff to help avoid crisis situations for the carer and avoidable hospital admissions.  The resultant CAT is an evidence-based alert thermometer consisting of 10 questions, guidance on the possible actions for each alert and space for an action plan to be jointly agreed by the assessor and carer.

Fulltext available in BMC Palliative Care

 

Integrated end-of-life care services – the Greenwich Care Partnership

European Journal of Palliative Care, March/April 2015, vol/iss 22/2, p84-89
Kate Heaps and Di Marks-Maran

There is often insufficient support in the community to enable people to die at home. The authors describe an integrated care project established in 2011 in the London borough of Greenwich, which enables more patients, and their carers, to receive appropriate care and support in their homes at the end of life.

Fulltext available in European Journal of Palliative Care
Available in print in Arthur Rank House, Brookfields Hospital

Difficulties in caring for a patient with cancer at the end of life at home and complicated grief

American Journal of Hospice and Palliative Medicine, Mar 2015, vol. 32, no. 2, p. 173-177

Ando, Michiyo, Ninosaka, Yasuyoshi, Okamura, Kazuhisa, Ishi, Yoko

This study aimed to investigate difficulties in caring for a patient with cancer at the end of life at home and to examine relationships between difficulties with care and complicated grief.  The results suggest that the condition of the patient, the view of the caregiver on home care, and the absence of other support are important factors contributing to difficulties of family caregivers, and that these difficulties may lead to complicated grief.

Dying at home: a qualitative study of family carers' views of support provided by GPs community staff

British Journal of General Practice, December 2014, vol./is. 64/629(e796-803)
Seamark D, Blake S, Brearley SG, Milligan C, Thomas C, Turner M, Wang X, Payne S 

Bereaved carers in this qualitative study were interviewed to ascertain what community support made death at home possible. Family carers suggested that minimising the number of carers involved in care, increasing or ensuring personal continuity, and maximising the informational and organisational aspects of care could lead to a more positive experience.

Developing a complex intervention to improve advance care planning for care home residents

European Journal of Palliative Care,  2014, Vol/iss  21/4 (173-6)

Tamsin McGlinchey, Stephen Mason, Philip Saltmarsh, Maureen Gambles, Gerard Corcoran, Rebecca Bancroft and John E Ellershaw

This paper describes phase1 of a project set up in the North-West of England to develop, implement and evaluate a complex intervention aimed at improving the planning of future care for care home residents with and without mental capacity.

Full text available in European Journal of Palliative Care

Available in print in the Arthur Rank House Library, Brookfields Hospital

Quality of end-of-life care for those who die at home: views and experiences of bereaved relatives and carers

International Journal of Palliative Nursing, February 2014, vol./is. 20/2(63-7)

Lees C, Mayland C, West A, Germaine A.

This paper reports findings from a study in the North West of England that explored bereaved relatives' and carers' experiences of end-of-life care at home using the Care of the Dying Evaluation (CODE) questionnaire. In general good quality care was provided, but there were times when adequate support was not evident in relation to pain control and what to expect when death was imminent. The study provides useful information for those who provide end-of-life care at home.

Available from EBSCOhost in International Journal of Palliative Nursing

Available in print at Arthur Rank House, Brookfields Hospital

A qualitative exploration of the experiences of people living alone and receiving community-based palliative care.

Journal of Palliative Medicine, February 2014, vol./is. 17/2(200-3)

O'Connor M

With the number of palliative care patients living alone projected to grow, it will become increasingly important to provide appropriate home-based care in order to support these patients to be cared for and die at home. This study explored the experiences of community-based palliative care cancer patients who live alone without a caregiver and the psychosocial issues they face. The practice implications for working with people close to death who are living alone are that supports and assistance may be needed to maintain social networks and also a sense of independence.