The impact of home mechanical ventilation on the time and manner of death for those with Motor neurone disease (MND): A qualitative study of bereaved family members.

Motor neurone disease (MND) is a progressive neurodegenerative disorder which is ultimately terminal. It causes muscle weakness which can lead to the need for assistance in breathing, for some with the disease. This paper draws on qualitative research using semi-structured interviews with 32 people bereaved by the death of a family member with MND who was dependent on home mechanical ventilation, from across the United Kingdom.

'Beyond the Reach of Palliative Care': A Qualitative Study of Patient and Public Experiences and Anticipation of Death and Dying.

The demands and costs of health care resulting from increasingly ageing populations have become a major public health issue in the United Kingdom and other industrially developed nations. Concern with cost containment and shortage of resources has prompted a progressive shift in responsibility from state provision of care to individual patients and their families, and from the institutional setting of the hospital to the domestic home. Under the guise of choice and patient centredness, end-of-life care is framed within a discourse of the 'good death': free from distress and discomfort and accompanied by significant others in the preferred place, usually assumed to be home.

The ideal and the real: Patient and bereaved family caregiver perspectives on the significance of place of death.

Home has become established as the preferred place of death within health policy and practice in the UK and internationally. However, growing awareness of the structured inequalities underpinning end-of-life care and the challenges for family members undertaking care at home raise questions about the nature of patient and public preferences and priorities regarding place of death and the feasibility of home management of the complex care needs at the end-of-life. This paper presents findings from a qualitative study of 12 patients' and 34 bereaved family caregivers' perspectives and priorities regarding place of death.

'Out of the frying pan into the fire': a qualitative study of the impact on masculinity for men living with advanced prostate cancer.

Background: Studies have highlighted how advanced prostate cancer causes biographical disruption and presents challenges to masculine identities for men. This article draws on a wider study that focused on the experiences of men living with advanced prostate cancer and their caregivers. Although men's experience of advanced illness is not overlooked in the literature, only a small body of work has taken an in-depth look at men's experiences with advanced prostate cancer and their caregivers in a non-Westernised cultural and social context.

Impacts of an advance care planning intervention on close relationships.

Objectives: To examine how an advance care planning (ACP) intervention based on structured conversations impacts the relationship between patients with advanced cancer and their nominated Personal Representatives (PRs).

Methods: Within the ACTION research project, a qualitative study was carried out in 4 countries (Italy, United Kingdom, the Netherlands, and Slovenia) to explore the lived experience of engagement with the ACTION Respecting Choices ACP intervention from the perspectives of patients and their PRs. A phenomenological approach was undertaken.

Talking about death and dying: Findings from deliberative discussion groups with members of the public.

Talking about death and dying is promoted in UK health policy and practice, from a perception that to do so encourages people to plan for their end of life and so increase their likelihood of experiencing a good death. This encouragement occurs alongside a belief that members of the public are reluctant to talk about death, although surveys suggest this is not the case. This paper describes findings from a research study in which people participated in deliberative discussion groups during which they talked about a range of topics related to death, including talking about death, the good death, choice and planning and compassionate communities.

'It's Not Like in the Films': Bereaved People's Experiences of the Deathbed Vigil.

This paper explores how people enact and experience the deathbed vigil when someone close to them is dying. It draws on qualitative interviews with 34 bereaved people carried out as part of a wider study exploring public perceptions of death and dying. Participants were aware of the expectation that they would attend the deathbed and did their best to do so.

How can advance care planning support hope in patients with advanced cancer and their families: A qualitative study as part of the international ACTION trial.

Objective: Clinicians' fears of taking away patients' hope is one of the barriers to advance care planning (ACP). Research on how ACP supports hope is scarce. We have taken up the challenge to specify ways in which ACP conversations may potentially support hope.

The 'work' of managing medications when someone is seriously ill and dying at home: A longitudinal qualitative case study of patient and family perspectives'.

Background: Managing medications can impose difficulties for patients and families which may intensify towards the end of life. Family caregivers are often assumed to be willing and able to support patients with medications, yet little is known about the challenges they experience or how they cope with these.

Aim: To explore patient and family caregivers' views of managing medications when someone is seriously ill and dying at home.

Advance care planning in patients with advanced cancer: A 6-country, cluster-randomised clinical trial.

Background: Advance care planning (ACP) supports individuals to define, discuss, and record goals and preferences for future medical treatment and care. Despite being internationally recommended, randomised clinical trials of ACP in patients with advanced cancer are scarce.

Methods And Findings: To test the implementation of ACP in patients with advanced cancer, we conducted a cluster-randomised trial in 23 hospitals across Belgium, Denmark, Italy, Netherlands, Slovenia, and United Kingdom in 2015-2018.

'My wife is my doctor at home': A qualitative study exploring the challenges of home-based palliative care in a resource-poor setting.

Background: Family caregiving is common globally, but when a family member needs palliative and end-of-life care, this requires knowledge and expertise in dealing with symptoms, medication, and treatment side effects. Caring for a family member with advanced prostate cancer in the home presents practical and emotional challenges, especially in resource-poor contexts, where there are increasing palliative cases without adequate palliative care institutions.

Aim: The study explored palliative and end-of-life care experiences of family caregivers and patients living at home in a resource-poor context in Ghana.

A Relative Absence: Exploring Professional Experiences of Funerals Without Mourners.

When someone dies, it is usual for relatives to gather at a funeral to embody a collective act of eulogy for the deceased and stand against the finality of death. When someone who lived alone dies alone at home, it is not always possible to identify anyone to attend a funeral. In such cases, funeral professionals are required to perform the appropriate social rites in the absence of the confirmatory power of a society.

Saudi service users' perceptions and experiences of the quality of their mental health care provision in the Kingdom of Saudi Arabia (KSA): A qualitative inquiry.

This paper presents, as part of a larger mixed-methods design, a study generating a theoretical understanding of issues pertinent to the quality of mental health care in the KSA from the perspective of those using services. Semi-structured interviews were undertaken with thirty service users admitted to inpatient psychiatric wards, using an interview guide developed by the researchers, based on relevant literature. Findings from the thematic analysis showed five themes: (1) The hospital as a prison: a custody versus care dilemma, (2) quality of interactions between staff and service users, (3) quality of services, (4) staff qualities and (5) suggestions for achieving quality of care.

An exploration of the experiences of professionals supporting patients approaching the end of life in medicines management at home. A qualitative study.

Background: The management of medicines towards the end of life can place increasing burdens and responsibilities on patients and families. This has received little attention yet it can be a source of great difficulty and distress patients and families. Dose administration aids can be useful for some patients but there is no evidence for their wide spread use or the implications for their use as patients become increasing unwell.

Managing Medicines for Patients Dying at Home: A Review of Family Caregivers' Experiences.

Context: Increased life expectancy, technical advances in treatment and symptom control, and the extension of palliative care in community settings not only lengthen life but also make it possible for many patients to be cared for, and to die, at home. Moreover, death increasingly occurs in late old age and after a prolonged period of comorbidity and/or frailty. This has far-reaching consequences for the way that professional services are resourced and organized and for the informal carers who are often responsible for providing the greater part of patient care, including management of complex medication regimes.

Supporting family carers in home-based end-of-life care: using participatory action research to develop a training programme for support workers and volunteers.

Background: Family carers are crucial in enabling dying people to stay at home, but are often not prepared for their caring role, receiving little support from formal health and social care services. It is increasingly likely that any help or support family carers receive will be provided by a third sector organisation on either a voluntary basis or by untrained carer support workers.

Objectives: To produce a training programme designed to equip carer support workers and volunteers with the basic skills and knowledge needed to support family carers.

The costs, resource use and cost-effectiveness of Clinical Nurse Specialist-led interventions for patients with palliative care needs: A systematic review of international evidence.

Background: Patients with palliative care needs do not access specialist palliative care services according to their needs. Clinical Nurse Specialists working across a variety of fields are playing an increasingly important role in the care of such patients, but there is limited knowledge of the extent to which their interventions are cost-effective.

Objectives: To present results from a systematic review of the international evidence on the costs, resource use and cost-effectiveness of Clinical Nurse Specialist-led interventions for patients with palliative care needs, defined as seriously ill patients and those with advanced disease or frailty who are unlikely to be cured, recover or stabilize.

Lung cancer diagnosed following an emergency admission: exploring patient and carer perspectives on delay in seeking help.

Purpose: Compared to others, patients diagnosed with lung cancer following an emergency, unplanned admission to hospital (DFEA) have more advanced disease and poorer prognosis. Little is known about DFEA patients' beliefs about cancer and its symptoms or about their help-seeking behaviours prior to admission.

Methods: As part of a larger single-centre, prospective mixed-methods study conducted in one University hospital, we undertook qualitative interviews with patients DFEA and their carers to obtain their understanding of symptoms and experiences of trying to access healthcare services before admission to hospital.

Lung cancer diagnosed following an emergency admission: Mixed methods study of the management, outcomes and needs and experiences of patients and carers.

Background: In the UK, although 40% of patients with lung cancer are diagnosed following an emergency admission (EA), data is limited on their needs and experiences as they progress through diagnostic and treatment pathways.

Methods: Prospective data collection using medical records, questionnaires and in-depth interviews. Multivariate logistic regression explored associations between diagnosis following EA and aspects of interest.

Advance care planning--a multi-centre cluster randomised clinical trial: the research protocol of the ACTION study.

Background: Awareness of preferences regarding medical care should be a central component of the care of patients with advanced cancer. Open communication can facilitate this but can occur in an ad hoc or variable manner. Advance care planning (ACP) is a formalized process of communication between patients, relatives and professional caregivers about patients' values and care preferences.

Communication between family carers and health professionals about end-of-life care for older people in the acute hospital setting: a qualitative study.

Background: This paper focuses on communication between hospital staff and family carers of patients dying on acute hospital wards, with an emphasis on the family carers' perspective. The age at which people in the UK die is increasing and many continue to die in the acute hospital setting. Concerns have been expressed about poor quality end of life care in hospitals, in particular regarding communication between staff and relatives.

Older people and barriers to self-reporting of chronic pain.

Too many older adults live with the negative consequences of chronic pain and its detrimental impact on quality of life. To explore this, an extended literature review was conducted to identify barriers the older person encountered in the self-reporting of their chronic pain. Four themes were found to mediate help-seeking behaviour.

Lung cancer diagnosed following emergency admission: a mixed methods study protocol to improve understanding of patients' characteristics, needs, experiences and outcomes.

Background: Lung cancer is the leading cause of death from cancer in England. About 40% of patients with lung cancer are diagnosed following an emergency admission (DFEA) to hospital. DFEA is more common in women, and more likely with increasing age and deprivation.

Beyond words: some uses of music in the funeral setting.

Music is a common feature of funerals, both in terms of sacred music and also secular music when a funeral is personalized to the individual who has died. Drawing on data from research exploring Scottish funeral practices, this article examines some of the ways in which music can be used during a funeral. It suggests five specific uses of music in the funeral context: the use of music as a means of control; the use of music as a means of inclusion and exclusion; music as a source of collective activity; music as a means of creating or shifting emotion; and music as a means of evoking the memory of the deceased person.