Article: Managing medicines for patients dying at home: a review of family caregivers' experiences

Increased life expectancy, technical advances in treatment and symptom control and the extension of palliative care in the community has resulted in family care givers often being responsible for providing the greater part of patient care including management of complex medication regimes. This literature review looked at 15 articles on this topic.  The findings showed that family caregivers often struggle to manage medications for someone dying at home yet there is an expectation they will take on this role. Five key themes were identified around administration, organisational skills, empowerment, relationships and support.

Wilson, E. et al. 2018. Managing medicines for patients dying at home: a review of family caregivers' experiences.  Journal of Pain and Symptom Management, September 11 epub - online

Available to download  or contact the library for a copy

Article: End of life decision making for people in a minimally conscious state: a review of the application of the Mental Capacity Act 2005

This UK article provides a thorough overview of the key sections of the Mental Capacity Act applied in end of life minimally conscious state (MCS) cases.  Currently any decision involving the withdrawal of clinically assisted nutrition and hydration must be referred to the Court of Protection.  It discusses two UK cases and how the courts have interpreted best interests when considering withdrawing or withholding nutrition and hydration and other life sustaining treatments.

Curtis, M. et al.  2018.  End of life decision making for people in a minimally conscious state. Indian Journal of Palliative Care, 24 (3) p 334-344

Available to download or request a copy from the library

Article: Creating a legacy - a tool to support end of life patients

Legacy activities help individuals and their families initiate a life-review process that results in a product that can be enjoyed before and after the person dies. Staff in a Portuguese palliative care unit explore the concept and creation of a legacy and the techniques and benefits, both physical and spiritual for both patients and carers.  They note the process "allows the patient to live better in the present and promotes a legacy that is lived, instead of only creating a legacy that is left behind for others".

Vidal, C. et al. 2018.  Creating a legacy - a tool to support end of life patients.  European Journal of Palliative Care.  25 (3) p 116-119.

Contact the library for a copy

Article: Role of clinical psychologists in hospices

NICE guidance in 2004 recommended a tiered approach to psychological care within cancer care with the provision of Clinical Psychologists to support other professionals deliver psychological care to patients.  However little is known currently about this  role within UK hospices and a survey was undertaken to address this gap.  The survey included quantitative and qualitative items about professionals' experience, how their input is organised, their roles and activities and their views on the aspects of working in this setting. Eighteen clinical psychologists responded and there was considerable variance in how their roles were organised with a range of therapeutic approaches  used. 

Russell, C. & Fountain A.  2018. Role of clinical psychology in UK hospices.  BMJ Supportive & Palliative Care,  e-pub.

Contact the library for a copy

Article: How to explore the end of life preferences for homeless people in the UK

There is a scarcity of research into the end of life preferences of homeless people in the UK. This article examines the barriers to this population accessing palliative care and outlines ways in which their preferences can be determined.

Webb, A. et al.  2018.  How to explore the end of life preferences for homeless people in the UK.  European Journal of Palliative Care, 25 (1) p 59-62.

Contact the library for a copy

Article: Is cancer fundraising fuelling quackery

Doctors face difficult conversations with patients with metastatic cancer for whom NHS treatments have failed.  A growing problem is how to advise patients who opt to pursue expensive, experimental treatment in the private sector.  This article reports on the crown funding sites helping people with advanced cancer spend thousands of pounds on such treatments and looks at ways to ensure patients and their donors are not being exploited.

Newman, M. 2018.  Is cancer fundraising fuelling quackery.  BMJ. 362.  September 12 online.

Contact the library for a copy

Article: End of life Doulas - what we can offer at the most difficult time of life

The end of life Doula movement is relatively new.  Following on from birth doula's that were established about a decade ago to provide support and guidance to mothers, and mothers-to-be, end of life doula's provide practical and emotional support for people who are dying and the families they leave behind.  This article written by Anna Webb, an end of life doula discusses her work.

Webb, A. 2018.  End of life Doulas - what we can offer at the most difficult time of life.  European Journal of Palliative Medicine, 25 (2) p 64-67.

Contact the library for a copy

Medicinal cannabinoids in palliative care

This Australian article discusses the use of medicinal cannabis for refractory symptoms in palliative care.  It provides an overview of the guiding principles of palliative symptom management, the symptom areas where cannabinoids have been evaluated and other practical considerations to be aware of.

Agar, M. 2018.  Medicinal cannabinoids in palliative care.  British Journal of Clinical Pharmacology, June 2018.

Available to download or request a copy from the library

Article: Psychological ideas in palliative care: distress, adjustment and coping

There is a growing recognition in the palliative care community of the emotional and psychological needs of patients - and their carers - as they reach the end of life.  But not every patient needs, wants or has access to formal contact with a psychologist.  Written by a clinical psychologist at Marie Curie Hospices, the article summaries the concepts of distress, adjustment and coping.   She lists a number of questions that are useful to ask to promote helpful discussions to gauge what support someone might need.

Strachan, J. 2018.  Psychological ideas in palliative care: distress, adjustment and coping.  European Journal of Palliative Care, 25 (1) p 26 - 30.

Contact the library for a copy

Article: The role of volunteers supporting people with life-limiting illness at home

Many hospices and palliative care organisations rely on volunteers to provide a range of roles in different settings.  This article describes the findings of an evaluation of end of life support delivered by volunteers on behalf of a local UK charity, along with expert input from a group of end of life care organisations.

Boland, J. & Fearnley, R. 2018.  The role of volunteers supporting people with life-limiting illness at home.   European Journal of Palliative Care, 25 (1) p 33-36.

Contact the library for a copy

Can patients and carers' experiences shape services?

Hospice admission for patients with dementia has been shown to increase caregiver satisfaction yet admission can also be harmful for the patient. This article, from Royal Trinity Hospice, London reports on the experience of a patient with dementia admitted for symptom control, along with respite for his carers.  Shortly into this admission he became increasingly agitated and was discharged home early.  This article reports on the changes the hospice made to create a  "dementia friendly" environment to reduce the disorientation and distress dementia patients were experiencing during their hospice stay.

Parry, L. 2018.  Can patient and carers experiences shape services.  BMJ Supportive & Palliative Care.  epub.

Contact the library for a copy

Clinical Practice Guidelines: Diagnosis, assessment and management of constipation in advanced cancer

Constipation is a commonly experienced problem and a significant source of  discomfort and distress.  The 2018 European Society of Medical Oncology (ESMO) updates guidelines for the diagnosis, assessment and management of constipation in advanced cancer.  A recommendation for the use of peripherally acting mu-opioid receptor antagonists (PAMORAS) is made.

Larkin, N. I. et al. 2018.  ESMO Clinical Practice Guidelines: Diagnosis, assessment and management of constipation in advanced cancer.  Annals of Oncology 29 (4) 111-125.

Available to download or request a copy from the library

Article: The dementia patient's pathway through the Specialist Palliative Care Services: part 1

The role of a specialist palliative care service for non malignant diseases is a relatively new one.  This