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
(If you haven't downloaded articles from this journal before, you will need to complete a brief online registration form - it only takes a couple of minutes)

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

Malignant pleural effusion in the palliative care setting

International Journal of Palliative Nursing, July 2013, vol./is. 19/7(320, 322-5)

Arber A, Clackson C, Dargan S

This paper discusses the palliative treatment options for malignant pleural effusion, which include thoracentesis, medical pleurodesis and indwelling pleural catheter. It is important that decisions about treatment are made within the multidisciplinary team and alongside the patient and family. Treatment goals are concerned with the relief or elimination of dyspnoea, restoration of near-normal activity and function, and avoidance of inpatient care.

Available in fulltext in International Journal of Palliative Nursing

Available in print at Arthur Rank House Library, Brookfields Hospital

The management of hypercalcaemia in advanced cancer

International Journal of Palliative Nursing, July 2013, vol./is. 19/7(327-31)
Pettifer A, Grant S

Hypercalcaemia is common in patients with advanced cancer. It usually responds to palliative treatment but, if left untreated, is potentially fatal. It can be difficult to detect as its symptoms can also be attributed to other common aspects of advanced malignancy. It is therefore essential that nurses are aware of the underlying physiology and can identify which patients are at risk of becoming hypercalcaemic. Hypercalcaemia often recurs and can become increasingly difficult to treat. Such refractory hypercalcaemia requires sensitive and considered management with advance care planning, particularly as difficult treatment dilemmas may arise if and when malignancy advances.

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

Achieving effective control in cancer pain: a review of current guidelines

International Journal of Palliative Nursing, December 2013, vol./is. 19/12(584-91)

Fielding F, M Sanford T, P Davis M

Progress in cancer treatment means people will live longer with the sequelae of cancer and disease-directed treatments. Current guidelines go beyond the unidimensional World Health Organization step-wise approach to pain management model by addressing comprehensive assessment, pharmacological management of opioids and adverse effects associated with opioid use, the role of adjuvants, and the application of non-pharmacological treatments. By following current guidelines promoting a multifaceted approach to the management of cancer-related pain and advocating for patient-centered care, nurses are uniquely positioned to champion effective cancer pain management.

Available in fulltext in International Journal of Palliative Nursing

Available in print at Arthur Rank House Library, Brookfields Hospital

Nurses' experiences caring for patients and families dealing with malignant bowel obstruction

International Journal of Palliative Nursing, December 2013, vol./is. 19/12(593-8)

Daine P, Stilos K, Moura S, Fitch M, McAndrew A, Gill A, Wright F

Malignant bowel obstruction (MBO) is a well-recognised complication of advanced abdominal and pelvic cancers. This qualitative study explored the perspectives of nurses from a palliative care unit, in-patient acute care oncology units, ambulatory cancer setting, and the community on their experiences of caring for patients with MBO and their families. Nurses have an important that role that involves identifying MBO signs and symptoms, having knowledge of treatment and symptom management options, and helping patients transition from a curative to a palliative philosophy of care.

Available in fulltext in International Journal of Palliative Nursing

Available in print at Arthur Rank House, Brookfields Hospital

An update on the importance of monitoring serum magnesium in advanced disease patients

Current Opinion in Supportive & Palliative Care, December 2013, vol./is. 7/4(396-405)

Centeno C, Lopez Saca JM 

Patients with advanced diseases are exposed to many causes of hypomagnesaemia, the most frequent being pharmacological causes through the administration of chemotherapy, antibiotics, proton pump inhibitors, and so on. Studies have shown a direct relationship between low levels of magnesium and nonspecific symptoms including pain that is difficult to control. The objective of this review is to demonstrate the importance of measuring magnesium levels in the blood of these patients. 

Available in fulltext in Current Opinion in Supportive and Palliative Care

Dying of brain tumours: specific aspects of care

Current Opinion in Supportive & Palliative Care, December 2013, vol./is. 7/4(417-23)

Steigleder T, Stiel S, Ostgathe C

This review of publications dealing with advanced stages of brain tumours tries to assess the knowledge gained in the past 2 years and to develop an outlook for further investigations. Data suggest that patients with primary or metastatic brain tumours often have a high symptom burden and unmet needs for palliative care and symptoms are hard to diagnose; patients suffer often and early from cognitive impairment but are rarely appropriately prepared concerning end-of-life wishes. This reflects on their caregivers' burden as well. 

Available in fulltext in Current Opinion in Supportive and Palliative Care