Next of Kin Perspectives on the Experience of End-of-Life Care in a Community Setting

2007 ◽  
Vol 10 (5) ◽  
pp. 1101-1115 ◽  
Author(s):  
Kaye Norris ◽  
Melanie P. Merriman ◽  
J. Randall Curtis ◽  
Charles Asp ◽  
Lilly Tuholske ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Community Setting ◽  
Life Care ◽  
Next Of Kin

Palliative care for community patients diagnosed with dementia: a systematic review

2019 ◽  
Vol 24 (12) ◽  
pp. 570-575
Author(s):  
Cathryn Smith ◽  
Gina Newbury
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
End Of Life ◽  
Health Professionals ◽  
End Of Life Care ◽  
Good Practice ◽  
Community Setting ◽  
Life Care ◽  
Staff Support ◽  
The Uk

Despite many efforts made by health organisations to deliver effective end-of-life care to patients with dementia, research indicates that palliative care is predominantly aimed at patients with terminal cancer, and that patients with dementia face challenges in accessing end-of-life care. This article explores the views of health professionals on providing palliative care to those patients diagnosed with dementia within the community setting. A systematic review of seven qualitative studies was performed to identify the best available evidence. The findings show that effective palliative care for patients with dementia continues being affected by many barriers and challenges. Good practice seems to be inconsistent and fragmented throughout the UK and European countries, and many health professionals are faced with difficulties associated with services and financial implications, training and education, staff support, communication, family support and dementia care.

scholarly journals Home care and end-of-life hospital admissions: a retrospective interview study in English primary and secondary care

2019 ◽  
Vol 69 (685) ◽  
pp. e561-e569 ◽  
Author(s):  
Sarah Hoare ◽  
Michael P Kelly ◽  
Stephen Barclay
Keyword(s):  
Home Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Hospital Admissions ◽  
Care Delivery ◽  
Care Provision ◽  
Life Care ◽  
Healthcare Staff ◽  
Next Of Kin ◽  
At Home

BackgroundEnabling death at home remains an important priority in end-of-life care policy. However, hospital continues to be a more prevalent place of death than home in the UK, with admissions at the end-of-life often negatively labelled. Admissions are frequently attributed to an unsuitable home environment, associated with inadequate family care provision and insufficient professional care delivery.AimTo understand problems in professional and lay care provision that discourage death at home and lead to hospital admissions at the end of life.Design and settingA qualitative study of admission to a large English hospital of patients close to the end of their life.MethodRetrospective in-depth semi-structured interviews with healthcare professionals (n = 30) and next-of-kin (n = 3) involved in an admission. Interviews addressed why older patients (>65 years) close to the end of life are admitted to hospital. Interviews were transcribed and analysed thematically.ResultsHome-based end-of-life care appeared precarious. Hospital admission was considered by healthcare staff when there was insufficient nursing provision, or where family support, which was often extensive but under supported, was challenged. In these circumstances, home was not recognised to be a suitable place of care or death, justifying seeking care provision elsewhere.ConclusionChallenges in home care provision led to hospital admissions. Home end-of-life care depended on substantial input from family and professional carers, both of which were under-resourced. Where either care was insufficient to meet the needs of patients, home was no longer deemed to be desirable by healthcare staff and hospital care was sought.

Feelings of Guilt—Experiences of Next of Kin in End-of-Life Care

2013 ◽  
Vol 15 (1) ◽  
pp. 33-40 ◽  
Author(s):  
Carina Werkander Harstäde ◽  
Birgitta Andershed ◽  
Åsa Roxberg ◽  
David Brunt
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Next Of Kin

Between the patient and the next of kin in end-of-life care: A critical study based on feminist theory

2017 ◽  
Vol 26 (1) ◽  
pp. 201-211 ◽  
Author(s):  
Ellen Ramvi ◽  
Venke Irene Ueland
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Moral Distress ◽  
Moral Identity ◽  
Critical Study ◽  
Life Care ◽  
Ethical Challenges ◽  
Next Of Kin ◽  
Science Data ◽  
Kin Relationship

Background: For the experience of end-of-life care to be ‘good’ many ethical challenges in various relationships have to be resolved. In this article, we focus on challenges in the nurse–next of kin relationship. Little is known about difficulties in this relationship, when the next of kin are seen as separate from the patient. Research problem: From the perspective of nurses: What are the ethical challenges in relation to next of kin in end-of-life care? Research design: A critical qualitative approach was used, based on four focus group interviews. Participants: A total of 22 registered nurses enrolled on an Oncology nursing specialisation programme with experience from end-of-life care from various practice areas participated. Ethical considerations: The study was approved by the Norwegian Social Science Data Service, Bergen, Norway, project number 41109, and signed informed consent obtained from the participants before the focus groups began. Findings and discussion: Two descriptive themes emerged from the inductive analysis: ‘A feeling of mistrust, control and rejection’ and ‘Being between hope and denial of next of kin and the desire of the patient to die when the time is up’. Deductive reinterpretation of data (in the light of moral distress from a Feminist ethics perspective) has made visible the constraints that certain relations with next of kin in end-of-life care lay upon the nurses’ moral identity, the relationship and their responsibility. We discuss how these constraints have political and societal dimensions, as well as personal and relational ones. Conclusion: There is complex moral distress related to the nurse–next of kin relationship which calls for ethical reflections regarding these relationships within end-of-life care.

Transitioning end-of-life care from hospital to the community: case report

2021 ◽  
Vol 30 (17) ◽  
pp. 1010-1014
Author(s):  
Pedro Lino ◽  
Mary Williams
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Hospital Setting ◽  
Community Setting ◽  
Life Care ◽  
Cultural Aspects ◽  
Advance Care ◽  
Increasing Demand ◽  
The Impact

Palliative/end-of-life care is an integral part of the district nursing service. There is increasing demand for palliative care to be delivered in the community setting. Therefore, there is a need for excellent collaboration between staff in primary and secondary care settings to achieve optimum care for patients. This article critically analyses the care delivered for a palliative patient in the hospital setting and his subsequent transition to the community setting. The importance of effective communication, holistic assessment in palliative care, advance care planning, organisational structures and the socio-cultural aspects of caring for patients at the end of life are discussed. Additionally, the article highlights the impact of substandard assessment and communication and the consequent effect on patients and families.

Next of Kin Perceptions of End of Life Care: An Investigation of Open-Ended Survey Responses to the VA’s Bereaved Family Survey (GP738)

2020 ◽  
Vol 60 (1) ◽  
pp. 268
Author(s):  
Caroline Gray ◽  
Maria Yefimova ◽  
Matthew McCaa ◽  
Joy Goebel ◽  
Scott Shreve ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Next Of Kin ◽  
Survey Responses ◽  
Bereaved Family

scholarly journals The Room as Metaphor: Next-of-Kin’s Experiences in End-of-Life Care

2015 ◽  
Vol 2015 ◽  
pp. 1-7
Author(s):  
Carina Werkander Harstäde ◽  
Åsa Roxberg
Keyword(s):  
End Of Life ◽  
Empirical Data ◽  
End Of Life Care ◽  
Theoretical Foundation ◽  
Life Care ◽  
Next Of Kin ◽  
Cancer Disease ◽  
Metaphorical Language ◽  
Inductive Approach

The “room” in end-of-life is a phenomenon that needs deeper understanding as it is a dimension that shows how health and suffering are shaped. Research on the concept of room was chosen as theoretical foundation in this study in order to reach a profound understanding of the next-of-kin’s “room” in end-of-life care. Lassenius’s hermeneutic interpretation in metaphorical language was used as an deductive-inductive approach to the empirical data. The data material comprised 33 interviews with next-of-kin about their experiences of end-of-life care when being close to a relative dying from a cancer disease. The analysis of the data formed four cases: the Standby, the Asylum, the Wall, and the Place. These cases lend their voices to the experiences of the next-of-kin in the study. The findings of this study explain and may well assist nurses to understand the experiences of being next-of-kin in end-of-life care as forming a room of rest from the suffering, a room of controlling the suffering, a room of hiding from the suffering, and a room of belonging.

A nurse practitioner-led community palliative care service in Australia

2019 ◽  
Vol 25 (5) ◽  
pp. 245-253 ◽  
Author(s):  
Julie Edwards ◽  
Dawn Hooper ◽  
Gillian Rothwell ◽  
Kerrie Kneen ◽  
John Watson ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Nurse Practitioner ◽  
End Of Life Care ◽  
Care Service ◽  
Palliative Care Service ◽  
Community Setting ◽  
Essential Elements ◽  
Life Care ◽  
Community Based

Background: Patients want community-based palliative care, but there was no continuity of care for patients at the Sydney Adventist Hospital to receive palliative and end-of-life care within a community setting. A nurse practitioner (NP)-led community palliative care service was developed. Aims: To present the background, design, function, and essential elements of the Sydney Adventist Hospital Community Palliative Care Service (SanCPCS). Methods: Semi-structured and cyclical discussions with key informants alongside internal document reviews. Findings: This is the first description of an NP-led community palliative care service model. The NP role ensured specialist training and extended clinical practice within the community setting. The SanCPCS delivers accessible, continuous, community-based palliative care throughout the patient's palliative and end-of-life journey. Conclusion: NP-led models for palliative and end-of-life care in the outpatient or community setting are a logical direction to meet patient need.

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