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.

Palliative and end of life care Priority Setting Partnership (PeolcPSP): Putting patients, carers and clinicians at the heart of palliative and end of life care research (report)

Marie Curie Cancer Care, January 2015

Marie Curie Cancer Care have published a report revealing the top 10 most important unanswered questions or evidence uncertainties in palliative and end of life care, identified and prioritised by patients, carers and health and social care professionals, to inform the future of palliative and end of life care research.

Follow this link for the full report

'Going for Gold’ helps to improve access to better end of life care

Guidelines in Practice (website), 2015

Professor Keri Thomas reviews updated end of life care guidance and policy, challenging healthcare professionals to identify patients’ needs earlier and improve communication

Follow this link for the website   (Select the 'Clinical topics' tab, 'E' from the topic A-Z, 'End of life care' from the menu. The results will appear below)

Core competencies for palliative care social work in Europe: an EAPC White Paper – part 2

European Journal of Palliative Care, 2015 January/February, Volume 22 Number 1 (38-44)
Sean Hughes, Pam Firth and David Oliviere

The competencies framework proposed is applicable to social workers in any role but specifically delineates the advanced competencies appropriate to the specialist work required in palliative and end of life contexts.

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

Patients’ own drugs and bedside lockers: can they be of benefit in hospices?

European Journal of Palliative Care, 2015 January/February, Volume 22 Number 1 (10-13)
Stephen Ward, Max Watson and Clare White

In UK hospitals, the NHS encourages the use of patients’ own drugs (PODs) administrated directly from bedside lockers. So far, there is little evidence supporting their use in a hospice setting. The authors have evaluated a PODs locker scheme implemented at a hospice in Northern Ireland.

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

Managing cholestatic pruritus in palliative care

European Journal of Palliative Care, 2014 November/December, Volume 21 Number 6 )266-9)

Claire Magee

How much do we know about pruritus and how is it best managed in palliative care? Claire Magee sums up current knowledge and evidence, outlining key treatment recommendations for healthcare practitioners.

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

The development and evaluation of an oncological palliative care deprescribing guideline: the 'OncPal deprescribing guideline'

Supportive Care in Cancer, January 2015, vol./is. 23/1(71-8)

Lindsay J, Dooley M, Martin J, Fay M, Kearney A, Khatun M, Barras M

Current data suggests that potentially inappropriate medicines (PIMs) are common in palliative cancer patients; however, there is a lack of criteria to assist clinicians in identifying PIMs in these patients.  A guideline to assist in the de-escalation of inappropriate medications was developed from current literature.

Developing a best practice model for partnership practice between specialist palliative care and intellectual disability services: a mixed methods study

Palliative Medicine, December 2014, vol./is. 28/10(1213-21)

McLaughlin D, Barr O, McIlfatrick S, McConkey R

The lack of access to good quality palliative care for people with intellectual disabilities is highlighted in the international literature.  Joint working and learning between intellectual disability and specialist palliative care were seen as key and fundamental. A framework for partnership practice between both services has been developed which could have international applicability and should be explored with other services in end-of-life care.

Fulltext available in Palliative Medicine

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

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.

Exercise for the management of cancer-related fatigue in lung cancer: a systematic review.

European Journal of Cancer Care, January 2015, vol./is. 24/1(4-14)

Paramanandam VS, Dunn V

The role of exercise in lung cancer is not clear.   This review found that exercise is beneficial and safe in lung cancer-related fatigue but the studies are small and, without any control group, lack clinically significant effect. Thus, exercises could be used in the management of cancer-related fatigue in lung cancer, in view of the available evidence in other cancer cohorts, with due caution.

Available in the Arthur Rank House Library, Brookfields Hospital

Identifying the barriers and enablers to palliative care nurses' recognition and assessment of delirium symptoms: a qualitative study

Journal of Pain and Symptom Management, Nov 2014, vol. 48, no. 5 (815-830)

Hosie, Annmarie, Lobb, Elizabeth, Agar, Meera, Davidson, Patricia M., Phillips, Jane

Supporting the development of palliative care nursing delirium recognition and assessment practice requires attending to a range of barriers and enablers at the patient and family, health professional, and system levels.

Fulltext available in Journal of Pain and Symptom Management

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

Do place-of-death preferences for patients receiving specialist palliative care change over time?

International Journal of Palliative Nursing, Dec 2014, vol. 21, no. 12, p. 579-583

Evans, Rebecca, Finucane, Anne, Vanhegan, Lynsey, Arnold, Elizabeth, Oxenham, David

The extent to which preferences may change is unclear so this retrospective case note review examines changes in PPD.  It found that once a clear preference is expressed, few patients changed their minds. The authors conclude that clinicians should continue to review patients whose initial preferences are unclarified so that they can be supported to die in their place of choice.

Full text available in International Journal of Palliative Nursing

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

Working toward a good life as a cancer survivor: a longitudinal study on positive health outcomes of a rehabilitation program for young adult cancer survivors

Cancer Nursing, January 2015, vol./is. 38/1(3-15)

Hauken MA, Holsen I, Fismen E, Larsen TM

The aim of this study was to investigate whether a complex rehabilitation program improved the health-related quality of life (HRQOL) and physical capacities of young adult cancer survivors.  The authors conclude the program especially tailored for YACS seems to build positive health outcomes such as HRQOL and physical capacity in a long-term perspective.

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.

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.

The benefits of rehabilitation for palliative care patients

American Journal of Hospice & Palliative Medicine, February 2015, vol./is. 32/1(34-43)

Barawid E, Covarrubias N, Tribuzio B, Liao S

This review article focuses on rehabilitation interventions that can be beneficial in patients with late stage illnesses. Rehabilitation may be useful in improving the quality of life by palliating function, mobility, activities of daily living, pain relief, endurance, and the psyche of a patient while helping to maintain as much independence as possible, leading to a decrease in burden on caregivers and family. Rehabilitative services are underutilized in the palliative care setting, and more research is needed to address how patients may benefit as they approach the end of their lives. 

Rehabilitation

Progress in Palliative Care, 01 December 2014, vol./is. 22/6

This a special issue of the journal, focusing on rehabilitation in palliative care and includes the following articles:

• Researching the rehabilitation needs of patients with life-limiting disease: challenges and opportunities
• An evaluation of the St Christopher's Hospice rehabilitation gym circuits classes: patient uptake, outcomes, and feedback
• Goal setting in palliative care: a structured review
• An analysis of the implementation of palliative rehabilitation in five UK hospices using the Stakeholder Salience Model
• A service evaluation of a specialist community palliative care occupational therapy service
• A physical exercise programme for palliative care patients in a clinical setting: observations and preliminary findings

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