The road ahead - National Council for Palliative Care Strategy 2015-2018

Published May 2015

The new strategy has been agreed by the NCPC's Board of Trustees and affirms their vision for palliative and end of life care over the next three years, demonstrates the role they can play in shaping the future and sets out the areas in which they will work to achieve these goals.

The strategy identifies four priority areas of work:

• Changing attitudes
• Changing behaviour
• Improving care and support
• Improving evidence and intelligence

Follow this link for the strategy

Tax help: a guide to taxation at bereavement (booklet)

Produced by Tax Help for Older People, this booklet is a checklist and reminder about things to do about tax at bereavement.  It is aimed at those where the personal representative of the person who has died is the surviving spouse or close family member.  Rather than being an exhaustive account of the entire tax system, it provides sufficient guidance on the common issues that need to be addressed when someone dies.

Download a copy of the guide here

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

End-of-life care for cystic fibrosis patients

European Journal of Palliative Care, 2015, 22(2)74-77; 22(3)136-140
Julia Nightingale and Irfan Shafiq

From lung transplantation to advance care planning, from symptom control to place of death, Julia Nightingale and Irfan Shafiq review the key issues arising for respiratory physicians when caring for patients suffering from cystic fibrosis. This paper is published in two parts

Available in print in Arthur Rank House Library, Brookfields Hospital

A palliative care outreach programme for patients with respiratory disease

European Journal of Palliative Care, May/June 2015, 22 (3) 126-9

Lisa Makey and Andrew Hiskett

Keech Hospice Care initiated an outreach programme aimed at helping patients with chronic lung disease to access palliative care. Lisa Makey and Andrew Hiskett show how it has improved patients’ quality of life and reduced their fear of engaging with hospices. Although this programme focused on respiratory disease, the results indicate that the management of any non-malignant condition could be optimised by the introduction of similar programmes.

Available in print in Arthur Rank House Library, Brookfields Hospital

Detecting pain or distress in people with dementia: an appraisal of two strategies

European Journal of Palliative Care, May/June 2015, 22 (3) 110-113

Jenny T van der Steen, Claud Regnard, Ladislav Volicer, Nele J A Van den Noortgate and Elizabeth L Sampson

What is the best approach to recognise pain or distress in people with dementia who cannot express themselves verbally? Jenny T van der Steen, et al have critically appraised two assessment tools: the pain tool PAINAD and the distress documentation tool DisDAT.

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

Predicting palliative care needs and mortality in end stage renal disease: use of an at-risk register

BMJ Supportive and Palliative Care, March 2015, 5(1) 19-25
Kennedy Feyi, Sarah Klinger, Georgina Pharro, Liz Mcnally, Ajith James, Kate Gretton, Michael K Almond

This research used the GSF `surprise question' to formulate a list of patients predicted to die within 1 year with end stage renal failure. The authors conclude that these patients can be accurately identified by a multi-disciplinary team using the surprise trigger question with a relatively high sensitivity and specificity. The accurate identification of patients with reduced life expectancy allows appropriate end of life care planning to begin in keeping with patients' wishes and within published guidelines.

Fulltext available in BMJ Supportive and Palliative Care
Available in print in Arthur Rank House Library, Brookfields Hospital

Cancer survivors' perceived need for supportive care and their attitude towards self-management and eHealth

Supportive Care in Cancer, June 2015, 23(6):1679-88

Jansen F; van Uden-Kraan CF; van Zwieten V; Witte BI; Verdonck-de Leeuw IM.

The authors conclude that the perceived need for supportive care including healthy lifestyle programs was high, and in general, cancer survivors had a positive attitude towards self-management and eHealth. Need and attitude were associated with sociodemographic and clinical variables and quality of life. Therefore, a tailored approach seems to be warranted to improve and innovate supportive care targeting cancer survivors.

Fulltext available in Supportive Care in Cancer

Log in using your Athens account details or contact the library where we can download it for you.

Pharmacological options for the management of refractory cancer pain-what is the evidence?

Supportive Care in Cancer, May 2015,  23(5):1473-81 

Afsharimani B;  Kindl K;  Good P;  Hardy J.

The management of patients with refractory pain remains a challenge. The evidence of benefit for many of the agents used is weak, and each additional agent increases the risk of adverse events. Evidence-based guidelines cannot, therefore, be developed at present. New approaches are recommended including targeted opioid therapy, multimodal analgesia, a goal-oriented approach to pain management and increasing use of the multidisciplinary team and support services.

Fulltext available in  Supportive Care in Cancer

Log in using your Athens account details or contact the library where we can download the article for you

Spirituality in palliative and supportive care (special issue)

Palliative & Supportive Care, February 2015, 13 (1)

This special issue focuses on spirituality and, among others, includes the following articles:

• Meaning of life in patients with cancer
• Mindfulness in informal caregivers of palliative patients
• Do spiritual patients want spiritual interventions
• The role of Chaplains in end of life decision-making
• Guidelines for conducting a spiritual assessment

Fulltext available in Palliative & Supportive Care

This links to the contents page.  To access the articles you will need your Athens account details or contact the library where they can be downloaded for you.

Verbalized desire for death or euthanasia in advanced cancer patients receiving palliative care

Palliative & Supportive Care, April 2015, 13(2):295-303

Guell E;  Ramos A;  Zertuche T;  Pascual A.

The authors found that although the single most common reason for a desire for death or desire for euthansia comment was pain or physical suffering, most of the reasons given were nonphysical.   They conclude that emotional and spiritual issues should be identified and effectively addressed when responding to a desire for death statement in terminally ill cancer patients.

Fulltext available in Palliative & Supportive Care

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

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 effect of acupressure application on chemotherapy-induced nausea, vomiting, and anxiety in patients with breast cancer

Palliative and Supportive Care, April 2015, 13(2):275-84
Genc F;  Tan M.

The purpose of this study was to determine the effect of acupressure applied to the pericardium 6 (P6 or neiguan) acupuncture point on chemotherapy-induced nausea, vomiting, and anxiety in patients with breast cancer.  The authors conclude that the efficacy of applying acupressure was demonstrated but that further research is needed.

Fulltext available in Palliative and Supportive Care 

Log in using your Athens account or contact the library and the article can be downloaded for you.

Management of radiotherapy-induced skin reactions

International journal of palliative nursing, Apr 2015, vol. 21, no. 4, p. 187-192

Trueman, Ellen

Radiotherapy is frequently used for palliation of disease-related symptoms and complications but treatment-related side-effects do occur, with an acute skin reaction being one of the most common. This article describes how the use of a recognised assessment tool and evidence-based guidelines can facilitate consistent, high-quality care in the management of radiotherapy-induced skin reactions.

Fulltext available in International Journal of Palliative Nursing

Available in print in Arthur Rank House Library, Brookfields Hospital

Last offices: nurses' experiences of the process and their views about involving significant others

International journal of palliative nursing, Apr 2015, vol. 21, no. 4, p. 173-178

Martin, Susan, Bristowe, Katherine

The aim of the study was to explore nurses' experiences of carrying out last offices, in hospice inpatient and community settings, and their views on involving the person's significant others in the process. 

Fulltext available in International Journal of Palliative Nursing

Available in print in Arthur Rank House Library, Brookfields Hospital

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

End-of-life care for cystic fibrosis patients – part 1

European Journal of Palliative Care, March/April 2015, vol/iss 22/2, p74-77

Julia Nightingale and Irfan Shafiq

From lung transplantation to advance care planning, from symptom control to place of death, this paper reviews the key issues arising when caring for patients suffering from cystic fibrosis.

Fulltext available in European Journal of Palliative Care

Available in print in Arthur Rank House Library, Brookfields Hospital

Young adult palliative care: challenges and opportunities

American Journal of Hospice and Palliative Medicine, Feb 2015, vol. 32, no. 1, p. 101-111

Clark, Jennifer K., Fasciano, Karen

This review examines the current data pertinent to young adult palliative care and discusses the challenges and opportunities where palliative medicine can enhance the care provided to this growing and vulnerable population. 

  

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.

A mixed-methods qualitative research study to develop a complex intervention for weight loss and anorexia in advanced cancer: the Family Approach to Weight and Eating

Palliative medicine, Feb 2015, vol. 29, no. 2, p. 164-176

Hopkinson, Jane B, Richardson, Alison

A mixed-methods process informed by the Medical Research Council's guidelines for developing a complex intervention was used to develop a psychosocial intervention for patients with incurable cancer and weight loss or poor appetite and their family caregivers and then to test for its feasibility, acceptability and perceived benefit. 15 of the patient/caregiver dyads reported benefits of the Family Approach to Weight and Eating. The intervention should now be tested in a pilot trial and the effect on emotional health outcomes in patients and their family caregivers evaluated.

Fulltext available in Palliative Medicine

Available in print in Arthur Rank House Library, Brookfields Hospital
 

Breaking bad news about transitions to dying: a qualitative exploration of the role of the District Nurse

Palliative Medicine, Feb 2015, vol. 29, no. 2, p. 138-146

Griffiths, Jane, Ewing, Gail, Wilson, Charlotte, Connolly, Michael, Grande, Gunn

Patients and families need to know the patient is approaching the dying phase, yet evidence suggests breaking bad news about the patient's transition to dying rarely happens. The authors suggest that while District Nurses are ideally placed to carry out this work, it is complex and they are unprepared for it. They conclude that DNs urgently need carefully tailored training in this aspect of their work, to enable them to provide optimal end of life care. 

Fulltext available in Palliative Medicine

Available in print in Arthur Rank House Library, Brookfields Hospital

The management of secondary lower limb lymphoedema in cancer patients: a systematic review

Palliative Medicine, Feb 2015, vol. 29, no. 2, p. 112-119

Leung, Elaine Y L, Tirlapur, Seema A, Meads, Catherine

The authors evaluate the available evidence for the treatment of secondary lower limb lymphoedema in patients with malignancies.

Fulltext available in Palliative Medicine

Available in print in Arthur Rank House Library, Brookfields Hospital

The prevention and management of pressure ulcers: summary of updated NICE guidance

Journal of Wound Care, Apr 2015, vol. 24, no. 4, p. 179-184

Cooper, L, Vellodi, C, Stansby, G, Avital, L

Conducting research interviews with bereaved family carers: when do we ask?

Journal of Palliative Medicine, Mar 2015, vol. 18, no. 3, p. 241-245

Bentley, Brenda, O'Connor, Moira

The aim of this study was to explore the insights of bereaved family carers about the most appropriate time to be involved in a research interview about the end of life and death of their family member.  The findings indicate that interviews with the bereaved may be most fruitful for researchers and beneficial to family carers when they are allowed to make the choice about timing for themselves, beginning weeks after the death of their family member.

Intravenous lidocaine for cancer pain without electrocardiographic monitoring: a retrospective review

Journal of Palliative Medicine, Apr 2015, vol. 18, no. 4, p. 373-377

Peixoto, Renata D'Alpino, Hawley, Pippa

The belief that cardiac monitoring is required for safe administration of intravenous lidocaine is a barrier to access in the palliative care setting.  The authors argue that their protocol of infusional lidocaine can be beneficial to patients with cancer with severe opioid-refractory pain, and can safely be administered with close observation and vital sign monitoring, without ECG monitoring.  They conclude this treatment could be delivered in palliative care units, hospices, or even patients' homes, providing suitable nursing supervision can be provided.

 

Efficacy and safety of gabapentin for uremic pruritus and restless legs syndrome in conservatively managed patients with chronic kidney disease

Journal of Pain and Symptom Management, Apr 2015, vol. 49, no. 4, p. 782-789

Cheikh Hassan, Hicham I, Brennan, Frank, Collett, Gemma, Josland, Elizabeth A, Brown, Mark A

The authors of this study conclude that gabapentin is a viable treatment for conservatively managed CKD and ESKD patients with pruritus and/or RLS, but side effects are common. Gabapentin should be used with caution although higher doses do not appear to be a factor associated with side effects.

Fulltext available in Journal of Pain and Symptom Management

Available in print in Arthur Rank House Library, Brookfields Hospital

Bed care for patients in palliative settings: considering risks to caregivers and bed surfaces

International Journal of Palliative Nursing, Feb 2015, vol. 21, no. 2, p. 66-70

Fragala, Guy

When moving and positioning patients in bed, health professionals face an occupational risk of injury. The turning and positioning (TAP) system is a new method of moving patients in bed, that evidence has shown to reduce the risk of injury to caregivers. Providing the correct bed surface is another aspect of bed care essential to the comfort of the palliative patient, and to aid wound prevention and treatment. This article provides an overview and discussion of these two aspects of bed care for palliative patients.

Fulltext available in International Journal of Palliative Nursing

Availablein print in Arthur Rank House Library, Brookfields Hospital

The unmet palliative care needs of those dying with dementia

International Journal of Palliative Nursing, Mar 2015, vol. 21, no. 3, p. 126-133

Dempsey, Laura, Dowling, Maura, Larkin, Philip, Murphy, Kathy

The literature suggests that people with end-stage dementia are still not receiving adequate or appropriate end of life care. Difficulty diagnosing dementia, a stigma surrounding the disease, lack of education of the dementia disease process and the ability to identify complications encountered at end-stage dementia by health-care providers, families and carers are some of the factors preventing those with dementia receiving effective EoLC.

Full text available in International Journal of Palliative Nursing

Available in print in Arthur Rank House Library, Brookfields Hospital

Development of a questionnaire to measure the key attributes of the community palliative care specialist nurse role

International Journal of Palliative Nursing, Feb 2015, vol. 21, no. 2, p. 87-95

Cameron, Dee, Johnston, Bridget

Since the role of specialist nurses is considered one of the least understood or valued developments in nursing, specialist nurses must demonstrate their contribution to quality, person-centred health care. The Quality Measure for Palliative Nursing is unique since it aims to measure the quality of care provided by community palliative care specialist nurses, and could also be used to measure patient satisfaction with the quality of care provided.

Fulltext available in International Journal of Palliative Nursing

Available in print in Arthur Rank House Library, Brookfields Hospital

Continuous subcutaneous infusion in palliative care: a review of current practice

International Journal of Palliative Nursing, Feb 2015, vol. 21, no. 2, p. 60-64

Thomas, Tabitha, Barclay, Stephen

Syringe drivers are widely used in palliative care, and this article reviews the challenges and outstanding questions associated with their use. Misperceptions among the lay public and some health professionals can be addressed by sensitive communication with patients and families and clear thinking in clinical teams concerning the drugs and doses used, particularly in non-malignant disease. Good levels of knowledge concerning syringe driver use has been found among GPs and community nurses, although this is not the case in some nursing home teams. The advantages of newer devices, safety and efficacy of drug combinations, selection of diluent, and management of site reactions are discussed.

Full Text:

Fulltext in International Journal of Palliative Nursing

Available in print in Arthur Rank House Library, Brookfields Hospital

Care of the human spirit and the role of dignity therapy: a systematic review of dignity therapy research

BMC palliative care, Jan 2015, vol. 14, p. 8

Fitchett, George, Emanuel, Linda, Handzo, George, Boyken, Lara, Wilkie, Diana J

Dignity Therapy (DT), an intervention for people facing serious illness, focuses on dignity conservation tasks such as settling relationships, sharing words of love, and preparing a legacy document for loved ones. The authors found that although patients reported high levels of satisfaction and benefits for themselves and their families, the effects on physical and emotional symptoms were inconsistent.  They point to three areas for future research on DT.

Common therapeutic factors in bereavement groups

Death Studies, 01 March 2015, vol./is. 39/3(165-172)

Rice, Alexander

The author integrates research on group therapy processes and treatment for grief, and examines evidence regarding group therapeutic factors that may influence bereavement group outcomes. Potential research examining the interactions of these processes, their effects on group functioning and outcomes, and the moderators of these effects are discussed.

The third wave of palliative care

Journal of Palliative Care, Dec 2014, vol. 30, no. 4, p. 287-290

Cellarius, Victor

In 1994, in an article that distilled a collection of discussions that had been simmering over the previous decade, David Clark asked whether hospice-palliative care was entering a second wave. At the time, hospice-palliative care was becoming bigger, more medical and technical, more research- and evidence-based, and more bureaucratic. The discussions were deeply evaluative ones, often pitting the original hospice-palliative care focus on the meaning of dying, life, and death, against the more recent focus on symptom relief and patient-guided quality of life. The question underlying those discussions has reappeared, for it seems that palliative care is entering a new wave once again.

Full text available in Journal of Palliative Care

Can comprehensive specialised end-of-life care be provided at home? Lessons from a study of an innovative consultant-led community service in the UK

European Journal of Cancer Care, March 2015, vol./is. 24/2(253-66)

Noble B, King N, Woolmore A, Hughes P, Winslow M, Melvin J, Brooks J, Bravington A, Ingleton C, Bath PA

Using a mixed method approach, the evaluation comprised: a retrospective analysis of secondary-care use in the last year of life; financial evaluation of the Midhurst Macmillan Specialist Palliative Care Service (MMSPCS) using an Activity Based Costing approach; qualitative interviews with patients, carers, health and social care staff and MMSPCS staff and volunteers; a postal survey of General Practices; and a postal survey of bereaved caregivers using the MMSPCS.  

Full text available in European Journal of Cancer Care

Desire for hastened death: exploring the emotions and the ethics

Current Opinion in Supportive & Palliative Care, March 2015, vol./is. 9/1(64-71)

Branigan M

Studies confirm that DHD is not always a request to die. Clarifying the intention behind the desire and exploring the individual factors and underlying reasons behind the wish have been described. We have a professional responsibility to mindfully explore with the patient the suffering that can be relieved and the suffering that remains.

Full text available in Current Opinion in Supportive and Palliative Care

Heart failure and palliative care: training needs assessment to guide priority learning of multiprofessionals working across different care settings

Current Opinion in Supportive & Palliative Care, March 2015, vol./is. 9/1(31-7)

Millerick Y, Armstrong I.

The results of the training needs assessment showed that the majority of respondents had some level of training needs to underpin their existing knowledge and skills in relation to palliative care, heart failure or both.

Full text available in Current Opinion in Supportive and Palliative Care

Using Skype to facilitate presence at the end of life

Journal of Hospice and Palliative Nursing, Dec 2014, vol. 16, no. 8, p. 489-494

Flanagan, Jane, DeSanto-Madeya, Susan, Simms, Benjamin

The authors report on the use of Skype to allow family members who would not have otherwise been able to be present at the bedside during the dying process to actively participate in the experience. For the two families involved, the utilization of Skype at the bedside facilitated a sense of closure around the dying experience.

Odor management in fungating wounds With metronidazole: a systematic review

Journal of Hospice and Palliative Nursing, Feb 2015, vol. 17, no. 1, p. 73-79

de Castro, Diana L. V., Santos, Vera Lucia C. G.

Odor is one of the main characteristics of malignant fungating wounds and is caused by the interaction of aerobic and anaerobic microbiota that colonizes and infects wounds. Although we did not find strong scientific evidence supporting the efficacy of metronidazole in odor control through randomized clinical studies or meta-analyses, this study provides the best available evidence thus far for the efficacy of 0.75% to 0.8% metronidazole in the odor control of malignant fungating wounds. 

A model for art therapy–based supervision for end-of-life care workers in Hong Kong

Death Studies, 01 January 2015, vol./is. 39/1(44-51)

Potash, Jordan S., Chan, Faye, Ho, Andy H. Y., Wang, Xiao Lu, Cheng, Carol

Supervision is one important way to provide adequate support for end of life care workers and volunteers that focuses on both professional and personal competencies. The inclusion of art therapy principles and practices within supervision further creates a dynamic platform for sustained self-reflection. A 6-week art therapy–based supervision group provided opportunities for developing emotional awareness, recognizing professional strengths, securing collegial relationships, and reflecting on death-related memories. The structure, rationale, and feedback are discussed.