The emotional labour of caring for patients at the end of life

End of Life Journal, 2014 Spring, Vol/iss 4/1

Deborah Holman

This article will discuss the emotional labour of nursing - defined as the emotional cost to nurses of managing, hiding and suppressing their emotions - and explore the significance and therapeutic value of emotional labour in the lives of patients at the end of life. It will then discuss the implications of emotional labour for the nursing profession in relation to the need to ensure nurses receive more support and education regarding managing their emotions whilst caring for others.

Fulltext available in End of Life Journal

Holistic assessment of a woman admitted to a hospice with anxiety

End of Life Journal, 2014 Spring, Vol/iss 4/1

Rebecca Newman

In advanced disease, symptoms of anxiety can be difficult to differentiate from symptoms of physical disease. Therefore, anxiety states are often undiagnosed in palliative care patients. The aim of the article is to show how a holistic assessment can successfully address anxiety at the end of life. However, it is recommended that formal assessments of psychological well-being are also required for patients with significant psychological needs to evaluate the effectiveness of the interventions and approaches used. 

Fulltext available in End of Life Journal

Physical exercise and therapy in terminally ill cancer patients: a retrospective feasibility analysis.

Supportive Care in Cancer, May 2014, vol./is. 22/5(1261-8)

Jensen W, Bialy L, Ketels G, Baumann FT, Bokemeyer C, Oechsle K

From this study it was concluded that PE/PT were feasible in >90 % of terminally ill cancer patients to whom PE/PT had been offered. Physical exercises, relaxation therapy, and breathing training were the most frequently applicable methods. Prospective trials are needed to evaluate the efficacy of specific PE/PT programs in terminally ill cancer patients.

Facilitating change and adaptation: the experiences of current and bereaved carers of patients with severe chronic obstructive pulmonary disease

Journal of Palliative Medicine, April 2014, vol./is. 17/4(421-7)

Philip J, Gold M, Brand C, Miller B, Douglass J, Sundararajan V

This study seeks to understand the experiences and needs of family carers of people with severe COPD.  The impact of caring borne by family carers is substantial and life changing. Health professionals may assist carers in their role through acknowledgement, facilitating recognition of the changes that have occurred (and their implications), and enabling creative adaptive responses for carers. Such assistance is likely to enhance the ability of carers to continue in this demanding role.

When open-ended questions don't work: the role of palliative paternalism in difficult medical decisions

Journal of Palliative Medicine, April 2014, vol./is. 17/4(415-20)

Roeland E, Cain J, Onderdonk C, Kerr K, Mitchell W, Thornberry K

Paternalism, characterized as the antithesis of autonomy, is widely dismissed as having any role in medicine. The authors disagree and argue that paternalism still has an important role in medical decision making.

Use of corticosteroids for anorexia in palliative medicine: a systematic review

Journal of Palliative Medicine, April 2014, vol./is. 17/4(482-5)

Miller S, McNutt L, McCann MA, McCorry N

As a result of this review, the authors conclude that corticosteroids are beneficial in treating anorexia in palliative care patients with malignancies; however there is no evidence for their use in anorexia due to end-stage nonmalignant disease. There is insufficient evidence to recommend any particular corticosteroid drug over another, or to recommend a dosing regimen.

Intimate partner violence in an outpatient palliative care setting

Journal of Pain & Symptom Management, April 2014, vol./is. 47/4(806-13)

Culver Wygant CR, Bruera E, Hui D

Palliative care patients may be at high risk for intimate partner violence because they are generally more vulnerable and dependent and more isolated as a result of physical and functional deterioration. In this article, the authors discuss a patient with advanced cancer who experienced IPV in the palliative care setting and use the case to highlight some of the management issues regarding IPV.

Fulltext available Journal of Pain and Symptom Management

Available in print at Arthur Rank House Library, Brookfields Hospital

Dying with dementia: symptoms, treatment, and quality of life in the last week of life

Journal of Pain & Symptom Management, April 2014, vol./is. 47/4(710-20)

Hendriks SA, Smalbrugge M, Hertogh CM, van der Steen JT

The aim of this study was to investigate symptom prevalence and prescribed treatment, explore associations with quality of life (QOL) in the last week of life, and examine symptom prevalence by cause of death of nursing home residents with dementia.

Available in fulltext in Journal of Pain and Symptom Management

Available in print at Arthur Rank House Library, Brookfields Hospital

Breakthrough cancer pain: the role of the nurse

International Journal of Palliative Nursing, March 2014, vol./is. 20/3(126-9)

Buchanan A, Davies A, Geerling J

Breakthrough pain is common in patients with cancer and is a significant cause of morbidity in this group of patients. Breakthrough pain is a heterogeneous condition, and so its management needs to be individualised. This paper describes the management of breakthrough pain and, specifically, the recently published guidelines of the European Oncology Nursing Society.

Available from EBSCOhost in International Journal of Palliative Nursing

Available in print at Arthur Rank House Library, Brookfields Hospital

Advice from children and adolescents on final conversations with dying loved ones.

Death Studies, 01 May 2014, vol./is. 38/5(308-314)

Keeley, Maureen P., Generous, Mark A.

To understand more about final conversations (communication between loved ones from the point of terminal diagnosis until death), 49 children/adolescents provided final conversation advice for other youth and for the dying person. The main finding was that young people should be included in the death process.

Managing the effects of cardiac cachexia

Journal of Hospice and Palliative Nursing, Feb 2014, vol. 16, no. 1, p. 15-20

Carlson, Heather, Dahlin, Constance M.

Although cachexia is common in cancer, it is poorly understood in noncancer diagnoses. This article reviews cancer cachexia in cardiac disease. The definition, pathophysiology, and assessment specific to cardiac disease are delineated. Diagnostic workup is discussed and pharmacological and nonpharmacological interventions are offered.

Risk factors for developing prolonged grief during bereavement in family carers of cancer patients in palliative care: a longitudinal study

Journal of Pain & Symptom Management, March 2014, vol./is. 47/3(531-41)

Thomas K, Hudson P, Trauer T, Remedios C, Clarke D

This study of 301 carers of patients receiving palliative care was conducted across three palliative care services. The authors found that greater bereavement dependency, a spousal relationship to the patient, greater impact of caring on schedule, poor family functioning, and low levels of optimism were risk factors for prolonged grief symptoms. 

They conclude that screening family carers on entry to palliative care seems to be the most effective way of identifying who has a higher risk of developing PG and recommend screening carers six months after the death of their relative to identify most carers with PG.

Available from Elsevier in Journal of Pain and Symptom Management

Available in print at Arthur Rank House, Brookfields Hospital

"Spirituality, suffering, and healing": a learning option for Western Australian medical students.

Journal of Pain & Symptom Management, March 2014, vol./is. 47/3(659-65)

Bridge DT, Bennett KS

The authors describe a two week learning option they developed for year 5 medical students which emphasizes learning from the patient and from each other.

Available from Elsevier in Journal of Pain and Symptom Management

Available in print at Arthur Rank House, 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

Music therapy: evaluation of staff perceptions at St Christopher’s Hospice

European Journal of Palliative Care, March-April 2014, Vol/iss 21/2 (72-75)
Giorgos Tsiris, Tamsin Dives and Gerry Prince

Research shows that music therapy can help to reduce pain, improve mood, reduce fatigue and facilitate relaxation and physical comfort. Additionally, it is reported to impact positively on people’s quality of life and spiritual well-being. 

The findings of this study are in alignment with, and complementary to, those of other studies that explored staff and patients’ perceptions of music therapy in other palliative care settings. Participants reported that music therapy can impact positively on the emotional, physical, social, environmental, creative and spiritual aspects of patients’ well-being.

Available in print at Arthur Rank House, Brookfields Hospital

The art and science of empathy

European Journal of Palliative Care, March-April 2014, Vol/iss 21/2 (69-71)
Viv Lucas

Empathy is a desirable trait for palliative care professionals to have. But is it innate or can it be taught? Following a review of the literature, Viv Lucas argues it can be both. She concludes that it is an innate capability that can be developed through teaching, training, experience, the arts and literature, and is particularly important in palliative care professionals who, through empathic therapeutic relationships, can help incurable patients to heal. 

Available in print at Arthur Rank House, Brookfields Hospital

Cancer-related fatigue: an updated systematic review of its management

European Journal of Palliative Care, March-April 2014, Vol/iss 21/2 (58-60)
Ollie Minton, Bee Wee and Paddy Stone

In this article, the authors discuss the role of drug and non-drug interventions and the evidence from metaanalyses regarding their effectiveness and potential use in clinical practice.

Available in print at Arthur Rank House, Brookfields Hospital

Death certification: changes in England and Wales

European Journal of Palliative Care, 2014, Vol/iss 21/1 (24-26)
Paul Perkins, Kathryn Griffin, Lynne Tarling, San Sumathipala and Bob Bell 

In England and Wales, the processes around death certification are about to change and this will particularly affect hospices. Paul Perkins, et al explain these changes in the law and what hospices need to do to prepare.

Available in print at Arthur Rank House, Brookfields Hospital

Antibiotic prescribing for urinary tract infection in hospices in Scotland

European Journal of Palliative Care, 2014, Vol/iss 21/1 (11-18)
Barbara C Wimmer, Linda Johnstone, Carolyn Mackay, Elayne Harris and Alexander B Mullen

General guidelines on the treatment of urinary tract infections are not always helpful in palliative care settings, argue Barbara C Wimmer, Linda Johnstone, Carolyn Mackay, Elayne Harris and Alexander B Mullen, who have looked at how such guidelines are adhered to in three Scottish hospices and propose alternative treatment charts.

Available in print at Arthur Rank House, Brookfields Hospital

Dementia at the end of life: what can hospices do?

European Journal of Palliative Care, 2014, Vol/iss 21/1 (6-10)
Regan, A; Tapley, M; Jolley, D.

Based on their experience of a new service offered by Willow Wood Hospice in Lancashire, the authors highlight the potential of hospices in helping people with dementia and their carers as the end of life approaches.

Available in print at Arthur Rank House, Brookfields Hospital

The challenges and suffering of caring for people with primary malignant glioma: qualitative perspectives on improving current supportive and palliative care practices

BMJ Supportive Palliative Care, 2014, Vol/iss 4/1 (68-76)
Collins, A; Lethborg, C; Brand, C; Gold, G; Moore, G; Sundararajan, V; Murphy, M; Philip, J.

Carers of patients with high-grade primary malignant glioma (PMG) are known to face extraordinary challenges, as they care for patients with multiple profound and often devastating physical, cognitive and behavioural changes. This study aimed to understand the supportive and palliative care needs in this setting, with a particular focus upon care at the end-of-life, which has hitherto been neglected. 

Fulltext available in BMJ_Supportive_and_Palliative_Care

Available in print at Arthur Rank House, Brookfields Hospital

Palliative social media

BMJ Supportive and Palliative Care, 2014, Vol/iss 4/1 (13-18)
Taubert, M; Watts, G; Boland, J; Radbruch, L.

The authors focus on how the subject of death and dying has influenced the world of microblogging, how it is fast becoming the focus of research and discuss how this may impact on the professional lives of palliative care workers, in particular around the area of digital legacy building and memorialisation. There is also a brief overview of what else social media can provide for palliative care and bereavement workers in terms of information provision, discussion forums, feedback, opinion gathering and research.

Fulltext available in BMJ_Supportive_and_Palliative_Care
Available in print at Arthur Rank House, Brookfields Hospital

Agreement between tele-rehabilitation involving caregivers and face-to-face clinical assessment of lymphedema in breast cancer survivors

Supportive Care in Cancer, January 2014, vol./is. 22/1(253-8)

Galiano-Castillo N, Ariza-Garcia A, Cantarero-Villanueva I, Fernandez-Lao C, Sanchez-Salado C, Arroyo-Morales M

This study aimed to determine the level of agreement between lymphedema assessment by tele-rehabilitation and by the traditional face-to-face method.  Thirty breast cancer survivors participated in a descriptive study of repeated measures using a crossover design. The preliminary findings support the use of an internet-based system to assess lymphedema in breast cancer survivors.

White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care

Palliative Medicine, March 2014, vol./is. 28/3(197-209)

van der Steen JT, Radbruch L, Hertogh CM, de Boer ME, Hughes JC, Larkin P, Francke AL, Junger S, Gove D, Firth P, Koopmans RT, Volicer L, European Association for Palliative Care (EAPC)

Experts from around the world have provided the first definition of palliative care in dementia based on evidence and consensus, a framework to provide guidance for clinical practice, policy and research.

Fulltext available in Palliative Medicine

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.

Prevalence, impact, and treatment of death rattle: a systematic review

Journal of Pain & Symptom Management, January 2014, vol./is. 47/1(105-22)

Lokker ME, van Zuylen L, van der Rijt CC, van der Heide A

To give an overview of the current evidence on the prevalence of death rattle in dying patients, its impact on patients, relatives, and professional caregivers, and the effectiveness of interventions. The authors conclude that death rattle is a common symptom in dying patients, but it is doubtful if patients suffer from this symptom. Current literature does not support the standard use of antimuscarinic drugs in the treatment of death rattle.

Fulltext available here

Available in print at Arthur Rank House, Brookfields Hospital

Three approaches to delivering end-of-life education to care homes in a region of south east England

International Journal of Palliative Nursing, January 2014, vol./is. 20/1(27-35)

Booth M, Springett A, Nash S, Banks C

The authors looks at three recent initiatives in West Sussex in south east England and appraises the advantages and disadvantages of each. The three initiatives were: an action learning project, a Six Steps to Success care home programme, and a Gold Standards Framework for Care Home programme.

Available in fulltext in International Journal of Palliative Nursing
Available in print at Arthur Rank House, Brookfields Hospital

A multimodal physiotherapy programme plus deep water running for improving cancer-related fatigue and quality of life in breast cancer survivors

European Journal of Cancer Care, January 2014, vol./is. 23/1(15-21)

Cuesta-Vargas AI, Buchan J, Arroyo-Morales M

A controlled clinical trial was conducted in 42 primary breast cancer survivors recruited from community-based Primary Care Centres.   The results suggest that a multimodal physiotherapy programme incorporating  deep water running decreases cancer-related fatigue and improves general health and quality of life in breast cancer survivors. Further, the high level of adherence and lack of adverse events indicate such a programme is safe and feasible.

Fulltext available in European_Journal_of_Cancer_Care (you may need to log-in with your Athens account details)
Available in print at Arthur Rank House, Brookfields Hospital

Management of intractable hiccups: an illustrative case and review

American Journal of Hospice & Palliative Medicine, March 2014, vol./is. 31/2(220-4)

Rizzo C, Vitale C, Montagnini M

Often thought of as a benign and self-limited condition, hiccups can become persistent or intractable, and thus be associated with substantial morbidity and distress. The authors present a case of intractable hiccups in a patient with an advanced hematological malignancy and review specific therapies for the management of persistent hiccups.

Caregivers experiences of managing medications for palliative care patients at the end of life: a qualitative study

American Journal of Hospice & Palliative Medicine, March 2014, vol./is. 31/2(148-54)

Sheehy-Skeffington B, McLean S, Bramwell M, O'Leary N, O'Gorman A.

This study explores the experience of caregivers managing medications for patients dying at home, focusing on the impact of polypharmacy, the use of syringe drivers and the use of "as needed" medications for symptom control. Themes that emerged include: 

• the significant burden of polypharmacy
• the positive impact of subcutaneous infusions
• the value of being able to give medications as needed for symptom control
• the importance of clear guidance to assist with medication management

Strategies are suggested that might ease the burden of medications at the end of life.

Young children's grief: parents' understanding and coping

Death Studies, 02 January 2014, vol./is. 38/1(36-43)

Bugge, Kari E., Darbyshire, Philip, Røkholt, Eline Grelland, Haugstvedt, Karen Therese Sulheim, Helseth, Solvi

This article reports a qualitative evaluation of a Norwegian Bereavement Support Program where 8 parents described their young child's grief reactions and coping and how these intersected with their own grief. Successful parental coping with their child's grief involves understanding the child's genuine concerns following the death and an intricately holistic balance between shielding and including, between informing and frightening, and between creating a new life while cherishing the old.

Associations among mother–child communication quality, childhood maladaptive grief, and depressive symptoms

Death Studies, 01 March 2014, vol./is. 38/3(172-178)

Shapiro, Danielle N., Howell, Kathryn H., Kaplow, Julie B.

Mother–child communication may be an important factor in determining children's grief reactions following the death of the father. Using observational methods, the current study suggests that mothers' warm, sensitive, and engaged communication is associated with lower levels of maladaptive grief and depressive symptoms in children whose fathers have recently died.  Findings suggest that mother–child communication may be an important intervention target for bereaved families.

Complicated spiritual grief: a deductive inquiry following the loss of a loved one

Death Studies, 01 April 2014, vol./is. 38/4(268-281)

Burke, Laurie A., Neimeyer, Robert A., Young, Amanda J., Bonin, Elizabeth Piazza, Davis, Natalie L.

Using participants' written responses to open-ended questions along with systematic exploration of this topic with a five-member focus group, the authors designed this qualitative study to better understand the first-hand experiences of bereaved individuals who have suffered a crisis of faith after the death of a loved one.  The study clarifies the construct of complicated spiritual grief, and lays the groundwork for development of more specific assessment and treatment of this condition.

What palliative care can do for motor neurone disease patients and their families

European Journal of Palliative Care, November/December 2013, Vol/iss 20/6 (286-89)
Oliver, David;  Aoun, Samar

Appropriate palliative care is essential for people with motor neurone disease, a progressive and irreversible neurological condition that can have distressing symptoms in its later stages. David Oliver and Samar Aoun detail how and when the specialist palliative care team should get involved.

Available in print at Arthur Rank House, Brookfields Hospital

Requests for non-disclosure of poor prognoses to patients

End of Life Journal, 2013, Vol/iss 3/4
Kristina Reynolds

This article explores the distress that being told about terminal prognoses causes patients and family members/loved ones and highlights some of the reasons for families requesting non-disclosure of terminal diagnosis. Cultural considerations for such requests, effects of non-disclosure on patients and ways in which to resolve the conflict are also discussed.

Available in fulltext in  End of Life Journal
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Leadership Alliance for the Care of Dying People (LACDP):

The LACDP is currently engaging on a key element of its work as part of a planned system-wide response to the recommendations contained in the independent report, More Care, Less Pathway, on the Liverpool Care Pathway.

The engagement has been extended until Friday 31 January 2014 to allow as many people as possible to take part.

Your feedback and views on these proposals will play an important part in helping to inform our final response. If you would like to take part, and have not already done so, please do so online here. 

https://www.engage.england.nhs.uk/consultation/care-dying-ppl-engage

A follow-up bereavement service: ‘completing the patient pathway’

Bereavement Care, December 2013, Vol/iss 32/3 (104-110)

Deborah Ford; Derek Fraser; Keith Morrison

The article describes an initiative, The Bereavement Care Follow up Service (BCFS) in Cambridge University Hospitals NHS Trust which offers brief intervention and support for relatives following the death of a loved one in hospital.  It presents its historical context, its pertinence to grief theory and practice and gives a description and evaluation of the service. The service provides an alternative, less problem-centred pathway to the standard route for those with problems relating to the hospital and gives relatives the opportunity to voice concerns, and to seek information and answers from those best equipped to meet them  Reported satisfaction with the service is high, both among relatives and staff.

Available in fulltext in Bereavement Care
Available in print at Arthur Rank House, Brookfields Hospital

Family focused grief therapy: a versatile intervention in palliative care and bereavement

Bereavement Care, December 2013, Vol/iss 32/3 (117-123)

Melissa P Masterson; Tammy A Schuler; David W Kissane

A diagnosis of advanced stage cancer is a difficult life event for the entire family. Previous studies have demonstrated the negative psychosocial outcomes associated with the burden of caregiving in conjunction with dysfunctional family relations. Family Focused Grief Therapy (FFGT) is a time-limited intervention that has been shown to be effective in aiding dysfunctional families through the promotion of family functioning, communication, cohesiveness, and conflict management. This paper outlines the content of FFGT therapy and highlights its unique aspects as well as the challenges of providing therapy to different types of families in the context of palliative care. 

Available in fulltext in Bereavement_Care

The impact on the family carer of motor neurone disease and intervention with noninvasive ventilation

Journal of Palliative Medicine, December 2013, vol./is. 16/12(1602-9)

Baxter SK, Baird WO, Thompson S, Bianchi SM, Walters SJ, Lee E, Ahmedzai SH, Proctor A, Shaw PJ, McDermott CJ

NIV was perceived as having little impact on carer burden. The data however highlighted a range of sources of other burdens relating to the physical strain of caring and role change; the challenge inherent in having time away; and problems relating to the timing of equipment and service delivery.

How do nurses in specialist palliative care assess and manage breakthrough cancer pain? A multicentre study

International Journal of Palliative Nursing, November 2013, vol./is. 19/11(528-34)

Soden K, Ali S, Alloway L, Barclay D, Barker S, Bird L, Hall L, Perkins P

This mixed-methodology study was undertaken to gain a better understanding of how registered nurses working in specialist palliative care assess and manage breakthrough cancer pain.  The authors conclude that the use of terminology remains variable but that this does not appear to have a negative impact on patient management, which was broadly in line with recently published consensus recommendations. 82% of respondents wanted more education on the assessment of breakthrough cancer pain.

Available in fulltext in International Journal of Palliative Nursing

Available in print at Arthur Rank House, Brookfields Hospital