Article: The experiences of family members witnessing the diminishing drinking of a dying relative

This systematic review looked at the current research knowledge of family members'  experiences of witnessing the diminishing drinking of dying patients.  Their findings revealed that family members views varied about the significance of the drinking, patient characteristics, the care environment, and their expectations of care by themselves and professionals.

Pettifer, A. et al. 2019. The experiences of family members witnessing the diminishing drinking of a dying relative: an adapted meta-narrative literature review. Palliative Medicine, 33 (9) p 1146-1157.

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Information for families: when death is near

This article from the Canadian web site Virtual Hospice is a well written piece about the last few days/hours when someone is dying.  It describes what will happen, and common concerns from families.  It covers decreasing energy, decreasing food and fluids, confusion, agitation, "visions", and the final physical changes in the body, including skin changes, breathing changes and when death has happened.
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NICE Guidance: End of life care for adults: service delivery (NG142)

This guideline describes the provision of end of life care services for adults approaching the end of their life with any condition and disease.  It advises on service models for care in acute settings by disease-specific specialists and their supportive services, and in community settings by primary care or specialists in palliative care (for example, in hospices).  It is intended to be used alongside the NICE guidelines on Care of dying adults in the last days of life.

Download guidance here

Article: Volunteers in a biography project with palliative care patients

This German study looked at the feasibility of training hospice volunteers in biography work.  The study evaluated the time required for training, co-ordination and supervision, outcomes, and risks, such as causing distress to patients or volunteers. Nine volunteers took part, completing questionnaires before the training and after the completion of biography work with a patient.  Patients provided positive feedback from the intervention.  For volunteers, it was personally rewarding.  There were no problems or negative experiences reported by either volunteers or patients.  The article records the interviews with volunteers before and after the training.

Hesse, M. 2019. Volunteers in a biography project with palliative care patients - a feasibility study.  BMC Palliative Care. 
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Recording hospice patients life stories

Since November 2017, St Leonard’s has been working in partnership with the Hospice Biographers charity and in October 2019 announced that the service is officially up and running. A range of St Leonard’s staff and two volunteers undertook specialist training in June this year to enable them to work with patients to prepare and record their biography.
Read more here

Article: What do relatives value most in end-of-life care for people with dementia

End of life care for people with dementia is often sub-optimal. This Dutch piece of research compared the experience of end of life care from the relatives perspective, comparing the home setting to a nursing home. Thirty-two bereaved individuals took part in the study.  Four key themes emerged from the interviews: acknowledging human dignity; being recognised as an important care giver; not talking about death and dying; and making decisions together. Recommendations for nursing homes were particularly to learn to offer the same standard of person-centred care as the home setting and ensure relatives are still involved in care.

Bolt, S. 2019. What do relatives value most in end-of-life care for people with dementia.   International Journal of Palliative Nursing, 25 (9) p 432 - 435.

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Child Bereavement UK: An updated range of resources for children and families

Child Bereavement UK have updated their range of leaflets supporting children when someone has died. The leaflets are very well written and very useful for both staff and families. They include:

When someone is not expected to live: supporting children

Explaining to young children that someone has died

Children's understand of death at different ages

Viewing a body with a child

Explaining funerals, burials, and cremation to children

Supporting bereaved children under 5 years of age

How children and young people grieve

What helps grieving children and young people

Supporting bereaved children and young people with additional needs through grief

When a grandparent dies: the impact on children and young people

Article: Team approaches in palliative care: a review of the literature

This article reviewed the literature on palliative care teams with a view of how and when they function best.  Emphasis is also placed on studies that suggest ways to mitigate the conflicts and limitations of team work.  Their findings strongly suggest that palliative care is best delivered through a multidisciplinary team approach.   The overall performance of a team they noted is largely determined by the supportive work environment built through effective  communication, leadership skills and mutual respect.

Fernando, GVMC. & Hughes, S. 2019. Team approaches in palliative care: a review of the literature.  International Journal of Palliative Nursing, 25 (9) p 444-450

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Article: Hospice at Home services in England: a national survey

Hospice at Home (HAH) services aim to enable patients to be cared for and die at home.  A national survey was carried out in 2017 with the aim to describe and compare the features of HAH services and understand the key enablers to service provision.  Information on service models, referral, staffing, finance, care provision and enablers to service provision was collected by telephone interview. 128  services were contacted with 70 (54.7%) providing data.  Considerable variation was found in HAH services and further work defining service features related to patient and carer outcomes would support future service development.  On going in depth evaluation of 12 of these HAH services will aid this understanding and shape recommendations for commissions and future providers.

Rees-Roberts, M. 2019. Hospice at Home services in England: a national survey.  BMJ Supportive & Palliative Care, epub 20.11.2019.

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Article - A step towards getting wound care right - first time.

Getting it Right First Time (GIRFT), is the national programme designed to improve medical care within the NHS by reducing unwarranted variations in practice.  This article, written by a group of tissue viability specialists used the GIRFT programme to consider how healthcare professionals and industry, working together can help to prevent the variations in wound care that currently exist.

Bethell, E. et al. 2019.  A step towards getting wound care right - first time.  Journal of Community  Nursing, 33 (5) p 63.

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Article: Comparison of financial support for family care givers of people at the end of life across six countries

The aim of this research was to identify and compare sources of support for family caregivers of people approaching end of life across six countries with similarly performing healthcare systems.  The 6 countries were Australia, Canada, Ireland, New Zealand, the United Kingdom, and the United States. The study found some form of financial support is available in all six countries, however the type, extent, and reach of support vary. The support is administered by multiple agencies, eligibility criteria are numerous and complex, and there is considerable inequity in the provision.  The authors concluded there is significant potential for policy makers to learn from other countries experiences.

Gardiner, C. 2019.  Comparison of financial support for family care givers of people at the end of life across six countries: a descriptive study.  Palliative Medicine, 33 (9) p1189-1211.

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Article: Patients' needs regarding anxiety management in palliative care

This Dutch study aimed to get insight into the support needs of anxious hospice patients with advanced cancer.  14 patients were included in the study and 13 interviewed within 6 months of their death.  Information,  open communication, a sense of control, safety, adequate symptom management and respect for patients' coping strategy were the 6 main expressed needs.  The authors conclude healthcare professionals can make a significant contribution in supporting anxious patients before death with further research focusing on the development of a systematic approach to this.

Zweers, D. 2019.  Patients' needs regarding anxiety management in palliative cancer care: a qualitative study in a hospice setting.  American Journal of Hospice and Palliative Medicine.  36 (11) p 947-954.

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Article: Communication between healthcare professionals and relatives of patients approaching the end-of-life

Effective communication between healthcare professionals and relatives is vital to ensure patients have a "good death". This study sought to establish what the current practice is.  31 papers were included in the review. 7 themes were identified from them with varied levels of family involvement in the decision making process. Doctors were regarded as responsible for discussing prognosis and decision making and nurses for providing individualised care.  Findings suggest training could provide healthcare professionals with strategies to improve communication such as question prompt lists could help relatives overcome barriers to involvement in decision-making.

Anderson, R. J. et al. 2019. Communication between healthcare professionals and relatives of patients approaching the end-of-life: A systematic review of qualitative evidence.  Palliative Medicine 33 (8) p 926-941.

Article: Development of a hospice research culture through staff development, education and collaboration

Over the last 2 years the Marie Curie Hospice Liverpool has developed a series of quality improvement initiatives to establish a UK hospice research culture and improve research opportunities.  This short article describes how this was implemented.

Stanley, S. 2019. Development of a hospice research culture through staff development, education and collaboration.  BMJ: Supportive and Palliative Care,

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Article: "I want to die in my sleep" - how people think about death, choice and control

This Australian study sought to explore societal and personal wishes and beliefs around death and dying.  Participants posted comments in a Massive Open Online Course (MOOC) on death and dying, entitled Dying2Learn.  For one activity in the MOOC, participants responded to a question asking them about "the best way to go".  The analysis showed that although death was considered a natural and normal process it was accompanied by deep reluctance to address the physical process of dying. Their findings highlighted a desire for choice and control in relation to dying, a common element in discussions of both advance care planning and palliative care.  The paper discusses the paradox of individuals wanting to have control whilst preferring not to know they are dying.

Sanderson, C. 2019. "I want to die in my sleep" - how people think about death, choice and control: findings from a Massive Open Online Course (MOOC).  Annals of Palliative Medicine, 8 (4) p 411-419.

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