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BMJ Supportive & Palliative Care; Mar 2018; vol. 8 (no. 1); p. 21-24

Wilcock, Andrew; Charlesworth, Sarah

This feature in the journal provides a selection of items that have featured in the News and Latest additions section of the website in recent months.

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Available in print in Arthur Rank Hospice Library, Cambridge

Developing design principles for a Virtual Hospice: improving access to care

BMJ Supportive & Palliative Care; Mar 2018; vol. 8 (no. 1); p. 53-57
Taylor, Andrea; French, Tara; Raman, Sneha

This paper presents early-stage design work on a Virtual Hospice to improve access to services provided by Highland Hospice serving a largely remote and rural population in Scotland. A number of themes and barriers to accessing the Hospice's services were identified and, in response, an initial set of seven design principles was developed to improve prioritisation and decision making by ensuring alignment with research insights. It is suggested that this approach could be applied by other hospices facing similar challenges on delivering services in remote and rural settings.

Available in print in Arthur Rank Hospice Library, Cambridge

Management of hiccups in palliative care patients

BMJ Supportive & Palliative Care; Mar 2018; vol. 8 (no. 1); p. 1-6
Jeon, Yong Suk; Kearney, Alison Mary; Baker, Peter Graham

This article provides an evidence-based approach overview of the causes and treatment of this debilitating condition for such patients, with a management algorithm.

Available in print in Arthur Rank Hospice Library, Cambridge

Why is Meaning-Centered Group Psychotherapy (MCGP) effective? Enhanced sense of meaning as the mechanism of change for advanced cancer patients

Psycho-oncology; Feb 2018; vol. 27 (no. 2); p. 654-660
Rosenfeld, Barry; Cham, Heining; Pessin, Hayley; Breitbart, William

The authors of this study looked at the data from two randomised controlled trials to advance understanding of the effectiveness of MCGP.  They suggest the findings support MCGP as a way of enhancing a sense of meaning which improves quality of life and decreases psychological distress.

Palliative care in dementia

Palliative Medicine; March 2018

This special issue of Palliative Medicine includes research aimed at increasing knowledge in the field of dementia. Included are both quantitative and qualitative studies that demonstrate sophisticated methodology and include at least one negative trial (Boogaard et al.2) because it's important to know what works and what does not. It includes the following topics:

• The effect of two feedback strategies on perceived quality of end-of-life care and comfort in dying nursing home residents with dementia.
• Effects on pain of a stepwise multidisciplinary intervention (STA OP!) that targets pain and behavior
• How palliative care is understood in the context of dementia

View the full contents in Palliative Medicine

Palliative care for those with neurological diseases

Palliative Medicine April 2018 32(4)

This special issue of Palliative Medicine includes research aimed at increasing knowledge in the field of neurological diseases.  It includes the following topics:

• Interventions for informal caregivers of people with motor neurone disease
• Views about assisted dying of people with Huntingdon's disease
• Palliative care triggers in progressive neurodegenerative conditions

Ten tips nephrologists wish the palliative care team knew about caring for patients with kidney disease

Journal of Palliative Medicine; Apr 2018; vol. 21 (no. 4); p. 546-551
Bansal, Amar D; Leonberg-Yoo, Amanda; Schell, Jane O; Scherer, Jennifer S; Jones, Christopher A

Written by nephrologists and palliative care clinicians, this article will help PC providers to have a richer understanding of kidney disease-related symptom burden, disease trajectory, prognosis, and barriers to hospice enrollment for patients with CKD and end-stage renal disease.

Diuretics combined with compression in resistant limb edema of advanced disease-a case series report

Journal of Pain and Symptom Management 2018; vol. 55 (no. 4); p. 1179-1183
Gradalski, Tomasz

This was a prospective observational study of 19 patients with severe bilateral leg edema resistant to parenteral diuretic therapy.  Clinically meaningful results were reported  leading the author to conclude that the combination of compression therapy with hypersaline diuretics could be considered as a valuable option for refractory cases of limb edema in advanced disease.

Targeted palliative care day therapy interventions using modified MYMOP2 tool can improve outcomes for patients with non-malignant diseases

International Journal of Palliative Nursing; Feb 2018; vol. 24 (no. 2); p. 92-95
Monnery, Daniel; Webb, Esther; Richardson, Lorna; Isaac, Jane; Chapman, Laura

The authors suggest that using the modified MYMOP2 tool to tailor and measure the outcome of holistic day therapy services results in a more sustained improvement for patients with non-malignant disease.

The efficacy of complementary therapy for patients receiving palliative cancer care

International Journal of Palliative Nursing; Mar 2018; vol. 24 (no. 3); p. 146-151
Cedar, S H; White, Melanie; Atwal, Anita

60 patients participated in this study to evaluate the effect of complementary therapies on patient well-being and to explore concerns and factors that influenced well-being in order to improve service provision. 

The nourishing role: exploratory qualitative research revealing unmet support needs in family carers of patients with advanced cancer and eating problems

Cancer Nursing; Mar 2018; vol. 41 (no. 2); p. 131-138
Hopkinson, Jane B

This study revealed that family carers needed information and support not only on how to provide nutritional care for the patients but also to manage their own nutritional risk.

Deactivation of implantable cardioverter-defibrillators in heart failure: a systematic review

Journal of Hospice and Palliative Nursing; Feb 2018; vol. 20 (no. 1); p. 63-73
Herman, Mark; Horner, Kathryn; Ly, Julie; Vayl, Yelizaveta

The aim of this systematic review was to identify problems that may delay the deactivation of implantable cardioverter-defibrillators and address possible considerations for their management to improve end-of-life care.  The authors conclude that ongoing discussions with patients are needed as well as the development of a protocol or policy to guide care at the end of life.

Psychological ideas in palliative care: distress, adjustment and coping

European Journal of Palliative Care; Jan 2018; vol. 25 (no. 1); p. 26-31

Jenny Strachan

In the latest in this Psychology in Palliative Practice series, Jenny Strachan looks at distress, coping and adjustment and considers when is a reaction normal and when does it become a problem.

Fulltext available in European Journal of Palliative Care (contact library for login details)

Available in print in Arthur Rank Hospice Library, Cambridge

Barriers to palliative care for people with severe mental illness: exploring the views of clinical staff

European Journal of Palliative Care; Jan 2018; vol. 25 (no. 1); p. 20-25
Jerwood, Jed; Phimister, Diane; Ward, Gillian; Holliday, Nikki; Coad, Jane

The first in a series of articles exploring inequalities in palliative care provision looks at end of life care for people with severe mental health illness.  It considers the challenges and the opportunities for improving high quality, personalised care for all.

Fulltext available in European Journal of Palliative Care (contact library for login details)
Available in print in Arthur Rank Hospice Library, Cambridge

'Being with' or 'doing for'? How the role of an end-of-life volunteer befriender can impact patient wellbeing: interviews from a multiple qualitative case study (ELSA)

Supportive Care in Cancer: Official Journal of the Multinational Association of Supportive Care in Cancer 2018 March 29

Steven Dodd, Matt Hill, Nick Ockenden, Guillermo Perez Algorta, Sheila Payne, Nancy Preston, Catherine Walshe

The aim of this research was to study the impact of a volunteer-provided befriending service for people in the last year of life and their families.  The participants reported feeling less lonely, isolated and depressed or anxious.

Fulltext available in Supportive Care in Cancer

Red blood cell transfusion in adult palliative care: a systematic review

Transfusion 2018, 58 (1): 233-241

Nicolas Chin-Yee, Joshua Taylor, Kaitlyn Rourke, Danika Faig, Alexandra Davis, Dean Fergusson, Elianna Saidenberg

The authors of this review concluded that although RBC transfusions might provide some relief and improve subjective well-being, the size and magnitude of the effects and the risks are unclear with no high quality evidence to support and guide the use of this procedure in the palliative care population.

A second class ending: Exploring the barriers and championing outstanding end of life care for people who are homeless (discussion paper)

Care Quality Commission and Faculty for Homeless and Inclusion Health, November 2017

This paper explores the reasons why homeless people do not experience good care at the end of life and demonstrates that there are many opportunities to improve standards of care.

Fulltext available here

The effect of relaxation techniques on edema, anxiety and depression in post-mastectomy lymphedema patients undergoing comprehensive decongestive therapy: A clinical trial

PloS One 2018 13 (1): e0190231

Bahareh Abbasi, Navid Mirzakhany, Leila Angooti Oshnari, Ashkan Irani, Samaneh Hosseinzadeh, Seyed Mehdi Tabatabaei, Shahpar Haghighat

This study aimed to assess the effects of relaxation techniques on the level of edema, anxiety and depression in women undergoing Comprehensive Decongestive Therapy (CDT).  It concluded that relaxation techniques reduced the anxiety and depression scores and the volume of edema in the patients with lymphedema.  Further studies are required to determine the cost-effectiveness of this intervention.

Fulltext available in PloS One 

Recommendations to reduce inequalities for LGBT people facing advanced illness: ACCESSCare national qualitative interview study

Palliative Medicine; 2018 32(1) p. 23-35
Bristowe, Katherine; Hodson, Matthew; Wee, Bee; Almack, Kathryn; Johnson, Katherine; Daveson, Barbara A; Koffman, Jonathan; McEnhill, Linda; Harding, Richard

ACCESSCare is the first national study to examine in depth the experiences of LGBT people facing advanced illness.  It shows that despite recent legislative change, experiences of discrimination and exclusion in health care persist for LGBT people. Ten recommendations, for health-care professionals and services/institutions, are made from the data. These are simple, low cost and offer potential gains in access to, and outcomes of, care for LGBT people.

End-of-life care for homeless people: A qualitative analysis exploring the challenges to access and provision of palliative care

Palliative Medicine; 2018 32(1) p. 36-45
Shulman, Caroline; Hudson, Briony F; Low, Joseph; Hewett, Nigel; Daley, Julian; Kennedy, Peter; Davis, Sarah; Brophy, Niamh; Howard, Diana; Vivat, Bella; Stone, Patrick

The aim of this study was to explore the views and experiences of current and formerly homeless people, frontline homelessness staff (from hostels, day centres and outreach teams) and health- and social-care providers, about the challenges of supporting homeless people with advanced ill health, and to make suggestions for improving care.  It highlights the complexities of identifying who is palliative and the lack of appropriate services for homeless people who have high support needs, particularly in combination with substance misuse issues. Recommendation include increased collaboration between services, the promotion of in-reach into hostels and greater training and support for all professional groups. 

Development and evaluation of the Dignity Talk question framework for palliative patients and their families: A mixed-methods study

Palliative Medicine; 2018 32(1) p. 195-205
Guo, Qiaohong; Chochinov, Harvey Max; McClement, Susan; Thompson, Genevieve; Hack, Tom

Effective patient-family communication can reduce patients' psychosocial distress and relieve family members' current suffering and their subsequent grief but terminally ill patients and their family members often experience great difficulty in communicating their true feelings, concerns, and needs to each other.  The aims of this study were to develop a novel means of facilitating meaningful conversations for palliative patients and family members, coined Dignity Talk and  to explore the anticipated benefits and challenges.  The questions were endorsed by a majority of participants who felt that Dignity Talk would be valuable in promoting conversations, enhancing family connections and relationships, enhancing patient sense of value and dignity, promoting effective interaction, and attending to unfinished business. 

Pharmacovigilance in hospice/palliative care: net effect of haloperidol for nausea or vomiting

Journal of Palliative Medicine; 2018 21(1) p. 37-43

Digges, Madeline; Hussein, Akram; Wilcock, Andrew; Crawford, Gregory B; Boland, Jason W; Agar, Meera R; Sinnarajah, Aynharan; Currow, David C; Johnson, Miriam J

The objective of this study war to explore the immediate and short-term net clinical effects of haloperidol when treating nausea and/or vomiting in palliative care patients.  The authors conclude that haloperidol as an antiemetic provided rapid net clinical benefit with low-grade, short-term harms.

Drugs for treating opioid-induced constipation: a mixed treatment comparison network meta-analysis of randomized controlled clinical trials

Journal of Pain and Symptom Management; Feb 2018; vol. 55 (no. 2); p. 468-479
Sridharan, Kannan; Sivaramakrishnan, Gowri

The objective of this study was to compare available interventions for the treatment of opioid-induced constipation, using principles of network meta-analysis.  The authors found the quality of evidence for the comparisons is either low or very low but concluded that subcutaneous methyl naltrexone performed better than other interventions for managing opioid-induced constipation.

Moral distress at the end of a life: when family and clinicians do not agree on implantable cardioverter-defibrillator deactivation

Journal of Pain and Symptom Management; 2018 55(2) p. 530-534
Steiner, Jill M; Patton, Kristen K; Prutkin, Jordan M; Kirkpatrick, James N

An implantable cardioverter-defibrillator can serve to avoid sudden death but may lead to a prolonged death from heart failure.  Although ethical consensus holds that defibrillator deactivation is legal and ethical, disagreements about life prolongation may complicate decision making. The ethical, technical, and medical complexity involved in the case study presented in this article speaks to the need for clear, prospective communication involving the patient, the patient's family, and members of the care team.

Addressing a patient's hope for a miracle

Journal of Pain and Symptom Management; 2018 55(2) p. 535-539
Shinall, Myrick C; Stahl, Devan; Bibler, Trevor M

Ill patients may make decisions to continue aggressive life-prolonging care based on hope for a miraculous recovery, and clinicians can find goals of care discussions with these patients extremely challenging.This case presents a typology of ways patients express hope for a miracle along with analysis of the motivations and beliefs underlying such hopes and suggestions for tailored responses by palliative care providers.

The development of a 'wet leg' pathway for chronic oedema

International Journal of Palliative Nursing; 2018 24(1) p. 40-46
Morgan, Karen; Thomas, Melanie

This article presents the Chronic Oedema 'Wet Leg' Pathway which provides nurses and therapists with clear guidelines to support prompt, efficient and effective management of all patients with chronic oedema and wet legs. 

Available in print in Arthur Rank Hospice Library, Cambridge

Psychological impairments burden and spirituality in caregivers of terminally ill cancer patients

European Journal of Cancer Care; 2018 27(1)
Lai, C; Luciani, M; Di Mario, C; Galli, F; Morelli, E; Ginobbi, P; Aceto, P; Lombardo, L

Spirituality is mostly studied in the context of terminally ill patients but this study investigates the association between spirituality, burden, and psychological state in caregivers of terminally ill cancer patients.  The authors conclude that in these caregivers, higher levels of intrinsic spirituality predicted a higher amount of time devote to caregiving, and also protected against the emotional distress linked to providing assistance.

Acupuncture in hospice settings: A qualitative exploration of patients' experiences

European Journal of Cancer Care; January 2018
McPhail, P; Sandhu, H; Dale, J; Stewart-Brown, S

The aim of this study was to explore patients' experiences of acupuncture in the hospice setting. Acupuncture was found to be a highly acceptable, accessible and popular treatment with positive holistic effects reported across the domains of physical, mental and spiritual health and no serious adverse effects. 

The acceptability and potential benefits of mindfulness-based interventions in improving psychological well-being for adults with advanced cancer: A systematic review

Complementary Therapies in Clinical Practice;  February 2018  30  p.68-78
Zimmermann, Fernanda F; Burrell, Beverley; Jordan, Jennifer

This systematic review aims to describe, evaluate and synthesize the acceptability and potential benefits of mindfulness-based interventions (MBIs) for the psychological well-being of people with advanced cancers.  It concludes that there is evidence of acceptability and of effectiveness, indicating potential benefit for this population.

Psychological ideas in palliative care: behaviour change

European Journal of Palliative Care; 2017 24(6) p. 260-265
Strachan, Jenny

There is little written about behaviour change in palliative care settings. In this article Jenny Strachan examines how encouraging patients to change certain types of behaviour – such as non-compliance with medicines, persistent reassurance seeking and strain in family relationships – comes down to understanding and adjusting the relationship between the behaviour and its reinforcers.

Fulltext available in European Journal of Palliative Care
Available in print in Arthur Rank Hospice Library, Cambridge

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

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

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

'A strange kind of balance': inpatient hospice volunteers' views on role preparation and training

Progress in Palliative Care; 2017 25(6) p. 279-285
Dean, Antonia; Willis, Susan

In the UK, there have been calls for the development of a core curriculum for hospice volunteers but debate exists around the potential for unnecessary 'professionalization' of volunteers. This qualitative, focus group study explores the views of UK inpatient hospice volunteers regarding initial training for role preparation. This study will inform local practice, shaping the education and support of future volunteers, and adds to the wider evidence-base surrounding the development of this crucial group within the hospice workforce.

Fulltext available in Progress in Palliative Care

Available in print in Arthur Rank Hospice Library, Cambridge

Fear in palliative care

Progress in Palliative Care; 2017 25(6) p 273-278
Macleod, A. D.

In this article the author discusses the difference between fear and anxiety and considers the limited literature on the management of fear in terminally ill patients. 

Fulltext available in Progress in Palliative Care
Available in print in Arthur Rank Hospice Library, Cambridge

Hidden losses and ‘forgotten’ suffering: the bereavement experiences of British Romany Gypsies and Travellers

Bereavement Care; Dec 2017; 36(3) p94-102
Rogers, Carol; Greenfields, Margaret

This paper presents a narrative review of the literature illustrated by quotes from a from a recently completed study that examines the bereavement support needs of Gypsies and Travellers and best practice for organisations seeking to support these ‘hard to reach’ populations.

"Unexpected and distressing": understanding and improving the experience of transferring palliative care inpatients to residential care

Journal of Social Work in End-of-Life and Palliative Care; 2017 13(2-3) p193-204
Kallianis, Voula; Joubert, Lynette; Gorman, Sue; Posenelli, Sonia; Lethborg, Carolyn

When a patient no longer requires specialist palliative care services, transfer from an inpatient palliative care facility to residential care may be necessary. This research explored the impact of this transition on the patient and their families and on the interdisciplinary health care team treating the patient and makes recommendations for best managing the transition. 

Family Anticipatory Grief: An Integrative Literature Review

American Journal of Hospice and Palliative Medicine,  September 2017, 34(8) 774-85

Coelho A, Barbosa A.

Uncertainty persists in anticipatory grief (AG) literature, concerning its definition and basic characteristics. This review synthesizes recent research in order to develop further knowledge about the family experience of AG during a patient's end of life.  Ten themes were identified, which correspond to AG nuclear characteristics, contributing to a deeper conceptualization of the term and to a more sensitive clinical practice.

The good of gardening: cultivating wellbeing at home and in hospices

Marie Curie, October 2017

A new joint campaign between Marie Curie, the UK’s leading terminal illness charity, and the National Garden Scheme, launches this week. The campaign, ‘The Good of Gardening’, aims to highlight the therapeutic potential of gardening for people living with terminal illnesses, and their families.

It follows a report published last year by the King’s Fund, and commissioned by the National Garden Scheme, that summarised research evidence linking gardens and gardening to a range of physical and psychological wellbeing benefits.

The good of gardening - cultivating wellbeing at home and in hospices

Sexual well-being in cancer and palliative care: an assessment of healthcare professionals' current practice and training needs

BMJ supportive & palliative care; Sep 2017; 7(3) 251-54

Gleeson, Aoife; Hazell, Emily

This study aimed to identify the current practice of healthcare professionals working with cancer and palliative care patients in Wales in relation to sexual well-being and to ascertain their need for training.

Fulltext available in BMJ Supportive and Palliative Care

Available in print in Arthur Rank Hospice Library, Cambridge

Improving malodour management in advanced cancer: a 10-year retrospective study of topical, oral and maintenance metronidazole

BMJ supportive & palliative care; Sep 2017; vol. 7 (no. 3); p. 286-291

George, Reena; Prasoona, Thotampuri Shanthi; Kandasamy, Ramu; Cherian, Renitha; Celine, Thangarathi; Jeba, Jenifer; Murali, Shakila; Mathew, David

Following a case note review of 179 patients examining the relative effectiveness of topical or oral metronidazole used for malodour in necrotic cancers, the authors suggest that their data support formulary guidelines recommending maintenance metronidazole for recurrent malodour.  They propose a protocol for metronidazole usage in managing malodour.

Fulltext available in BMJ Supportive and Palliative Care 

Available in print in Arthur Rank Hospice Library, Cambridge

The mourning process of older people with dementia who lost their spouse

Journal of Advanced Nursing; Sep 2017; 73(9) 2143-2155

Watanabe, Akiko; Suwa, Sayuri

In this study, the authors aimed to explore the mourning process of people with dementia who have lost their spouse using family caregivers' and professionals' perspectives and devise grief care for people with dementia.