Volunteer involvement in advance care planning: a scoping review

Journal of Pain and Symptom Management, 2019 57(6) p.1166
Sellars, Marcus; Simpson, Jamie; Kelly, Helana; et al

Volunteer involvement in ACP has not been clearly described in the literature. This study aimed to map research on volunteer involvement in ACP, identify outcomes associated with ACP volunteer models, and determine gaps in existing knowledge. The results obtained will help to inform strategies that will maximize volunteer effectiveness and performance monitoring in ACP delivery.  A positive finding from the review was that most of the volunteer-led ACP facilitation programs reported improvements in the frequency of completion of ACP conversations or advance care directives, compared with having no ACP initiative in place. In addition, volunteers in both facilitation and education roles became more comfortable discussing ACP as they became more experienced in their role. 

Fulltext available in Journal of Pain and Symptom Management 

Advance care planning in progressive neurological diseases: lessons from ALS

BMC Palliative Care 2019 18:50
Antje A. Seeber, A. Jeannette Pols, Albert Hijdra, Hepke F. Grupstra, Dick L. Willems and Marianne de Visser

The authors used the knowledge gained from observing ACP in a tertiary ALS centre in Amsterdam to formulate recommendations for integration of ACP in the care of patients with other chronic progressive neurological diseases.  They suggest that it is feasible to integrate ACP into follow-up of patients with ALS and PMA from diagnosis onwards. Supported by recent literature, they argue that such a well-structured approach would enhance the quality of care and life of patients with other chronic progressive neurological diseases.

Fulltext available in BMC Palliative Care 

It's a hard conversation to have'. Healthcare professionals' views concerning advance care discussions with young people affected by life-limiting neuromuscular diseases: an interview study

BMJ Supportive & Palliative Care, 2019 9(1) p. e9
Hiscock, Andy; Barclay, Stephen

There is very limited literature concerning the discussions about end-of-life plans healthcare professionals have with young people affected by life-limiting neuromuscular diseases. While recognising the inevitable progression of the conditions, there was no consensus among interviewees concerning best approaches to discuss end-of-life care plans. Several environmental and personal barriers were identified that lead to avoidance of the emotionally challenging and difficult conversations.

Cultural factors influencing advance care planning in progressive, incurable disease: a systematic review with narrative synthesis.

Journal of Pain and Symptom Management, 2018 56(4) p.613-636

McDermott, Ella; Selman, Lucy Ellen

Low uptake of advance care planning indicates it is less acceptable to patients of some cultural backgrounds. The objectives of this study were to explore how cultural factors influence ACP for patients with progressive, incurable disease and how ACP might be made cross-culturally appropriate.

The engagement of young people in their own advance care planning process: A systematic narrative synthesis

Palliative Medicine, 2018 32(7) p.1147-1166
Hughes, Ben; O'Brien, Mary R.; Flynn, Anita; Knighting, Katherine

With an increasing number of young people living with life-limiting conditions there is a need to understand how far young people are engaged in their own advance care planning in order to shape future practice and facilitate young people's wishes. The aim of this study was to identify and assess the current evidence to determine the barriers and facilitators to the engagement of young people in their own advance care planning process.

Missed opportunities: advance care planning report

Macmillan 2018

This report examines the role of ACP and explores the barriers to its implementation among people with incurable cancer as well as health social care professionals. It outlines the vital role advance care planning (ACP) can play in ensuring a dying persons wishes are met.

Download the document here

My future wishes: Advance Care Planning (ACP) for people with dementia in all care settings

NHS England, 2018 This document aims to assist practitioners, providers and health and social care commissioners create opportunities for people living with dementia to develop an Advance Care Plan. Please note the any changes that are made to this document in the future will be completed on the digital copy which can be found here:

NHS England - My future wishes

What do patients with cancer and their families value most at the end of life? A critical analysis of advance care planning

International Journal of Palliative Nursing;  2017 23(12) p. 596-604
Johnson, Stephanie B; Butow, Phyllis N; Kerridge, Ian; Tattersall, Martin Hn

The findings from this study suggest that models of ACP which are constructed around patients' 'rights' to determine what happens to their bodies may do little to enhance the quality of EoL care, as patients value veracity, trust and comfort at the EoL more than autonomy. Quality EoL care should focus on paying increased attention to the relational and social aspects of care.

Advance care planning in motor neuron disease: a systematic review

Palliative & Supportive Care, Aug 2016, vol. 14, no. 4, p. 411-432

Murray, Leigh, Butow, Phyllis N.

This review aims to summarize what is known about the prevalence, content, patient/caregiver benefits, healthcare professional awareness/support, and healthcare outcomes associated with ACP in the MND setting. 

Fulltext available in Palliative and Supportive Care

Advance care planning in England: is there an association with place of death? Secondary analysis of data from the National Survey of Bereaved People

BMJ Supportive & Palliative Care 2016 June 16

Josie Dixon, Derek King, Martin Knapp

The authors used an expressed preference for place of death which was recorded by health care staff as an indicator of advanced care planning in order to explore whether ACP is associated with place of death.  They also considered if enough support was available to care for a person dying at home and the overall quality of care and pain management.  They found a strong association between advance care planning and a range of quality outcomes, including preferred place of death.

Fulltext available in BMJ Supportive and Palliative Care

Available in print in Arthur Rank House Library, Brookfields Hospital

Advance care planning in motor neuron disease: A qualitative study of caregiver perspectives

Palliative Medicine, May 2016, vol. 30, no. 5, p. 471-478
Murray, Leigh, Butow, Phyllis N, White, Kate, Kiernan, Matthew C, D'Abrew, Natalie, Herz, Helen

This study aimed to explore the acceptability and impact of advance care planning from the point of view of caregivers.  Many of those who took part thought that the ACP document helped, or would help, in terms of patient autonomy, facilitating difficult decision-making and improving communication within families. The authors noted that the timing and manner of its introduction required sensitivity to avoid potential harms in approaching the subject too soon.

Available in print in Arthur Rank Hospice Library, Brookfields Hospital

Factors influencing Australian general practitioners' clinical decisions regarding advance care planning: a factorial survey

Journal of Pain and Symptom Management, Apr 2016, vol. 51, no. 4, p. 718

Sinclair, Craig, Gates, Kiri, Evans, Sharon, Auret, Kirsten Anne

In this study, the authors found that the likelihood of initiating ACP was influenced by GP attitudes and psychosocial aspects of the doctor-patient relationship. They suggest that to encourange engagement with the process, training needs to be targeted at attitudes towards ACP and communication skills.

Conservative care of the elderly ckd patient: a practical guide

Advances in Chronic Kidney Disease, Jan 2016, vol. 23, no. 1, p. 51-56 

Raghavan, Divya, Holley, Jean L

Palliative or supportive care should be routine for conservatively managed CKD patients. Decision-making about dialysis or conservative management requires patients and families be given information on prognosis, quality of life on dialysis, and options for supportive care. Advance care planning is the process by which these issues can be explored. Patients with ESRD have a high symptom burden, which needs to be addressed in any treatment plan. Common symptoms include pain, fatigue, insomnia, pruritus, anorexia, and nausea. Recommendations for management are discussed in the article. 

Fulltext available in Advances in Chronic Kidney Disease

New Macmillan toolkit for health and social care staff on discussing care plans

A new resource designed to help healthcare professionals discuss future care plans with patients, has been released by Macmillan Cancer Support.

The toolkit is aimed at generalists caring for people with progressive illnesses and those reaching the end stage of their lives. It covers a range of topics, and includes video clips and web links to assist professionals with their learning.

New free online training resource on Advance Care Planning

A new, free training resource is available to support healthcare professionals, carers, families and patients to prepare for the end of life by making advance care plans.

The training, which consists of 10 online modules, was produced by Kent Community Health NHS Foundation Trust and Canterbury Christ Church University and hospices in Kent.

Advance care planning in a UK hospice: the experiences of trained volunteers

European Journal of Palliative Care, May/June 2015, 22(3)144-51
Penny Jones, Kate Heaps, Carla Rattigan and Di Marks-Maran

In 2013, Greenwich & Bexley Community Hospice launched an ACP project to enable hard-to-reach people with life-limiting illness in the London borough of Greenwich, and their carers, to develop an advance care plan. The hospice aimed to recruit and train up to 45 volunteers to support a minimum of 225 people with life-limiting illness. An evaluation of the volunteers’ experiences was commissioned after the project’s first year of operation. This article discusses the development of the project and the findings of the evaluation, starting with a
brief literature review of ACP.

Available in print in Arthur Rank House Library, Brookfields Hospital

Advance care planning in people with early cognitive impairment

BMJ Supportive and Palliative Care, March 2015, 5(1) 63-69
Kenny Cheong, Paul Fisher, Jenny Goh, Lynette Ng, Hui Mien Koh, Philip Yap

This study aims to explore the perspectives of patients with early cognitive impairment(ECI) regarding ACP, and in particular, understand their reasons for resistance.  It was found that a large proportion of patients with ECI decline ACP discussions and the reasons are influenced by personal values, coping behaviours and socio-cultural norms. These findings have important implications for practice.

Fulltext available in BMJ Supportive and Palliative Care

Available in print in Arthur Rank House Library, Brookfields Hospital

A communication training perspective on AND versus DNR directives

Palliative & Supportive Care, April 2015, 13(2):385-7

Levin TT;  Coyle N.

An alternative, "Allow Natural Death" (AND), has been proposed as a better way of framing end of life discussions.   The authors contrast the advantages and disadvantages of the term AND from the communication training perspective and suggest that AND-framing language replace DNR as a better way to facilitate meaningful end-of-life communication. One well-designed, randomized, controlled simulation study supports this practice. We also consider the communication implications of "natural" versus "unnatural" death.

Fulltext available in Palliative and Supportive Care

Log in using your Athens account or contact the library where it can be downloaded for you

The power of advance care planning in promoting hospice and out-of-hospital death in a dialysis unit

Journal of Palliative Medicine, January 2015, vol./is. 18/1(62-6)

Schmidt RJ, Weaner BB, Long D

This study found that comprehensive and systematic advance care planning among patients with ESRD on dialysis promotes greater hospice utilization and may facilitate the chance that death will occur out of hospital.

Preferences of patients with Parkinson's disease for communication about advanced care planning

American Journal of Hospice & Palliative Medicine, February 2015, vol./is. 32/1(68-77)

Tuck KK, Brod L, Nutt J, Fromme EK

Despite shortening life, Parkinson's disease (PD) is often not considered "terminal" and uncertainty exists about when to discuss end-of-life planning. A survey was sent to patients with PD assessing attitudes toward the timing and initiation of discussions regarding their disease.  It was found that preferences regarding end-of-life discussions vary.  The authors suggest that patients should be asked about their preferences for this information and offer discussion periodically.