Death and dying in the UK

Death, dying and devolution | The University of Bath Institute for Policy Research

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The articles in this collection cover what happens before someone dies, including issues around palliative care and support for carers; what happens at death, including issues around the proper regulation of funerals and public financial support for the bereaved; and what happens to those who are left behind, including emotional support for those who have been bereaved and issues around managing the estates of those who have died.

The report reviews policy areas associated with death, dying and bereavement within the context of devolution. It focuses on the national and regional delegation of power, resources and authority across the UK and the implications of this for those who are dying, dead, or bereaved as well as those tasked with organising and running the services that support these groups of people.

The report can be downloaded here

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Nurse-led intervention helps carers’ manage medication and cancer pain

The potential benefits of a new nurse-led intervention in supporting carers to manage pain medication in people with terminal cancer are explored in this article | ScienceDaily

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Image source: frankieleon – Flickr // CC BY 2.0

A study funded by Marie Curie and Dimbleby Cancer Care published today shows the potential benefits of a new nurse-led intervention in supporting carers to manage pain medication in people with terminal cancer. Researchers from the University of Southampton, Cardiff University and University of Leeds have developed a nurse-led intervention to help carers with medication management, and evaluated its use in routine practice.

The Cancer Carers’ Medicines Management (CCMM) intervention addresses carers’ beliefs, knowledge and skills and promotes self-evaluation of competence. It centres on a structured conversational process between a nurse and carer. It is the first time that a study has attempted to integrate an intervention developed using input from carers and nurses into routine palliative care. The research showed that the CCMM intervention compared favourably with current practice as it offered a more systematic and comprehensive approach to supporting carer management of pain medicines.

Dementia Caregiver Grief and Bereavement

Alzheimer’s disease and related dementias make up the fifth leading cause of death for individuals of 65 years of age and older in the United States. Seventy percent of these individuals will die in long-term care settings | Western Journal of Nursing Research

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The aim of this integrative review was to examine and synthesize the evidence on grief and bereavement in Alzheimer’s disease and related dementias caregivers. This review identified five critical gaps in the existing evidence:

(a) a lack of ethnic and gender diversity among caregivers studied,

(b) limited use of valid instruments to study dementia caregiver grief and bereavement,

(c) no substantive research examining dementia caregiver grief and bereavement for caregivers whose family members die in long-term care,

(d) a lack of evidence examining the effect of hospice services on dementia caregiver grief and bereavement

(e) a lack of grief and bereavement interventions for dementia caregivers whose family members die in long-term care.

Full reference: Arruda, E.H. et al. (2017) Dementia Caregiver Grief and Bereavement: An Integrative Review. Western Journal of Nursing Research. Vol.  39 (no. 6) pp. 825-851

Quality of life, psychological burden, unmet needs, and care satisfaction in family caregivers of advanced cancer patients

Anneke Ullrich et. al. Quality of life, psychological burden, needs, and satisfaction during specialized inpatient palliative care in family caregivers of advanced cancer patients BMC Palliative Care. Published online 10 May 2017.

Background

This pilot study aimed to investigate quality of life, psychological burden, unmet needs, and care satisfaction in family caregivers of advanced cancer patients (FCs) during specialized inpatient palliative care (SIPC) and to test feasibility and acceptance of the questionnaire survey.

Methods

During a period of 12 weeks, FCs were recruited consecutively within 72 h after the patient’s admission. They completed validated scales on several outcomes: quality of life (SF-8), distress (DT), anxiety (GAD-7), depression (PHQ-9), supportive needs (FIN), palliative care outcome (POS), and satisfaction with care (FAMCARE-2). We used non-parametric tests, t-tests and correlation analyses to address our research questions.

Results

FCs showed high study commitment: 74 FCs were asked to participate whereof 54 (73%) agreed and 51 (69%) returned the questionnaire. Except for “bodily pain”, FCs’ quality of life (SF-8) was impaired in all subscales. Most FCs (96%) reported clinically significant own distress (DT), with sadness, sorrows and exhaustion being the most distressing problems (80–83%). Moderate to severe anxiety (GAD-7) and depression (PHQ-9) were prevalent in 43% and 41% of FCs, respectively. FCs scored a mean number of 16.3 of 20 needs (FIN) as very or extremely important (SD 3.3), 20% of needs were unmet in >50% of FCs. The mean POS score assessed by FCs was 16.6 (SD 5.0) and satisfaction (FAMCARE-2) was high (73.4; SD 8.3).

Conclusions

This pilot study demonstrated feasibility of the questionnaire survey and showed relevant psychosocial burden and unmet needs in FCs during SIPC. However, FCs’ satisfaction with SIPC seemed to be high.

Full document available here

Palliative sedation challenging the professional competency of health care providers and staff

Leboul, D. et al. BMC Palliative Care | Published online: 11 April 2017

Background: Despite recent advances in palliative medicine, sedating a terminally ill patient is regarded as an indispensable treatment to manage unbearable suffering. With the prospect of widespread use of palliative sedation, the feelings and representations of health care providers and staff (carers) regarding sedation must be carefully explored if we are to gain a better understanding of its impact and potential pitfalls. The objective of the study was to provide a comprehensive description of the opinions of carers about the use of sedation practices in palliative care units (PCU), which have become a focus of public attention following changes in legislation.

Conclusions: The uncertainty experienced by the carers with regard to the medical, psychosocial and ethical justification for sedation is a source of psychological burden and moral distress, and it has proved to be a major source of suffering in the workplace. Lastly, the study shows the uncertainty can have the positive effect of prompting the care team to devise ways to deal with it.

Read the full article here

Home palliative care works: but how?

Sarmento, V.P. et al. BMJ Supportive & Palliative Care. Published Online: 23 February 2017

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Objective: To understand patients and family caregivers’ experiences with home palliative care services, in order to identify, explore and integrate the key components of care that shape the experiences of service users.

Conclusions: Home palliative care teams improve patients and caregivers experience of security when facing life-limiting illnesses at home, by providing competent care and being present. These teams should therefore be widely available and empowered with the resources to be present and provide competent care.

Read the full article here

Supporting relatives and carers at the end of a patient’s life

Berry, M. et al. (2017) BMJ. 356:j367

  • Effective support can make a considerable difference to the relatives of people who are dying; helping to allay fears, reducing stress and anxiety, and minimising suffering in bereavement.

  • Clear communication around practical considerations (death certificate, funeral arrangements, information around autopsy, etc) and psychosocial support (normalising grief, cultural and spiritual considerations) is key.

  • Doctors need to familiarise themselves with local systems and protocols. Written communication in addition to verbal is beneficial.

All doctors, irrespective of their specialty or the setting in which they work, will care for patients who die. Around half of all deaths occur in hospitals.1 Evidence suggests that the quality of communication around this process is poorer in hospitals than in other settings, according to responses from relatives who have experienced bereavement.2 Over half of NHS complaints concern care of the dying.3

This article discusses how to best support relatives and carers at the end of a patient’s life. While the focus is on the hospital setting, the principles are applicable to community and care home settings. In this article, “relative” encompasses family members, care givers, and those close to the patient. The article presumes throughout that the patient has given consent for information to be shared with relatives (Box 1).

Read the full article here