scholarly journals “It's been quite a challenge”: Redesigning end-of-life care in acute hospitals

2014 ◽  
Vol 13 (3) ◽  
pp. 609-618 ◽  
Author(s):  
Alistair Hewison ◽  
Laura Lord ◽  
Cara Bailey
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Qualitative Interviews ◽  
Care Pathways ◽  
Life Care ◽  
Staff Support ◽  
Staff Members ◽  
Care Plans ◽  
Acute Hospitals ◽  
Service Redesign

AbstractObjective:This paper reports the findings of an interview-based study undertaken to investigate the introduction of end-of-life (EoL) care pathways in three acute trusts, as part of a larger project examining service redesign. The aim was to examine the barriers to and facilitators of change.Method:Twenty-one in-depth qualitative interviews were conducted with staff working in three National Health Service (NHS) acute hospital trusts. These staff members were involved in end-of-life care, and their accounts were analyzed to identify the key issues when introducing service changes in these settings.Results:Thematic analysis revealed five major themes—two of which, leadership and facilitation, and education and training, indicate what needs to be in place if end-of-life care pathways are to be adopted by staff. However, the remaining three themes of difficult conversations, diagnosing dying, and communication across boundaries highlight particular areas of practice and organization that need to be addressed before end-of-life care in hospitals can be improved.Significance of results:Organization of end-of-life care in acute hospitals is challenging, and care pathways provide a degree of guidance as to how services can be delivered. However, even when there is effective leadership at all levels of an organization and an extensive program of education for all staff support the use of care pathways, significant barriers to their introduction remain. These include staff anxieties concerning diagnosing dying and discussing dying and end-of-life care planning with patients and their families. It is hoped these findings can inform the development of the proposed new care plans which are set to replace end of life care pathways in England.

scholarly journals Conversations About Death and Dying, End-of-Life Care Plans and Preferences Between Aging Parents and Adult Children

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 417-417
Author(s):  
Hyo Jung Lee ◽  
Jacobbina Jin Wen Ng
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Adult Children ◽  
End Of Life Care ◽  
Death And Dying ◽  
Family Members ◽  
Life Care ◽  
Joint Decision ◽  
Aging Parents ◽  
Care Plans

Abstract This study aims to investigate whether attitude and perception on late-life death and dying, end-of-life care plans and preferences could be better understood from current values shared between aging parents and their adult children in the multi-cultural city-bound country, Singapore. We are in the process of interviewing 20 aging parent-adult child dyads. Up to date, six semi-structured interviews were completed and transcribed. We performed Content analysis to analyze the transcripts. Preliminary findings showed that both aging parents and adult children rarely discussed this issue, although parents had their own plans or preferences. The major barriers against open conversations about death and dying of aging parents include: the perception of not-yet time to talk about this issue (without knowing when the right time is) and tendency to have conversations about death in tandem with finances, but not death itself. Although specific end-of-life care plans or arrangements were not thought out thoroughly, aging parents expressed a high level of trust and reliance on close family members’ decisions regarding their end-of-life care. They tended to agree on joint decision-making process within family, even though adult children had no or unmatched ideas about their aging parents’ end-of-life wishes. This did not necessarily align with previous findings in Western countries, underscoring individuals’ control over their own death and dying process. Open conversation within family, family-involved advance care planning, or joint decision-making processes may be warranted to promote quality of life and death in older Singaporeans and well-being of their family members of all ages.

scholarly journals Voices that matter: end-of-life care in two acute hospitals from the perspective of bereaved relatives

2018 ◽  
Vol 17 (1) ◽  
Author(s):  
Sarah Donnelly ◽  
Geraldine Prizeman ◽  
Diarmuid Ó Coimín ◽  
Bettina Korn ◽  
Geralyn Hynes
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Acute Hospitals

End-of-Life Doulas: Documenting Their Backgrounds and Services

2021 ◽  
pp. 003022282110470
Author(s):  
Amy Dellinger Page ◽  
Jonelle H. Husain
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Qualitative Interviews ◽  
Family Members ◽  
Demographic Characteristics ◽  
Life Care ◽  
Healthcare Settings ◽  
Survey Results ◽  
Original Survey

This is an exploratory study to document the demographic characteristics, backgrounds, and services provided by trained and certified INELDA end-of-life doulas. Like birth doulas, end-of-life doulas represent a divergent, yet complementary form of care for dying persons. The purpose of end-of-life care is to facilitate comfort of the dying person and their closest family members. Surveys were completed by 618 end-of-life doulas regarding their demographic characteristics, employment backgrounds, services, and their experiences providing end of life care to dying persons and their closest family members. Follow-up qualitative interviews were also conducted with a subset of 39 respondents who completed the original survey. Results show that trained doulas are largely white (91.4%), female (90.4%), hold a Bachelor’s (32.3%) or Masters (32.4%) degree, and are employed outside of their EOLD work (70.1%). Qualitative data details services provided to dying persons and family members in addition to the benefits and challenges of working with traditional healthcare settings.

scholarly journals Co-construction of the family-focused support conversation: a participatory learning and action research study to implement support for family members whose relatives are being discharged for end-of-life care at home or in a nursing home

2020 ◽  
Vol 19 (1) ◽  
Author(s):  
Sue Duke ◽  
◽  
Natasha Campling ◽  
Carl R. May ◽  
Susi Lund ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Research Evidence ◽  
Care Transitions ◽  
Family Members ◽  
Life Care ◽  
The Family ◽  
Acute Hospitals ◽  
Pilot Implementation ◽  
Context Specific

Abstract Background Many people move in and out of hospital in the last few weeks of life. These care transitions can be distressing for family members because they signify the deterioration and impending death of their ill relative and forthcoming family bereavement. Whilst there is evidence about psychosocial support for family members providing end-of-life care at home, there is limited evidence about how this can be provided in acute hospitals during care transitions. Consequently, family members report a lack of support from hospital-based healthcare professionals. Methods The aim of the study was to implement research evidence for family support at the end-of-life in acute hospital care. Informed by Participatory Learning and Action Research and Normalization Process Theory (NPT) we co-designed a context-specific intervention, the Family-Focused Support Conversation, from a detailed review of research evidence. We undertook a pilot implementation in three acute hospital Trusts in England to assess the potential for the intervention to be used in clinical practice. Pilot implementation was undertaken during a three-month period by seven clinical co-researchers - nurses and occupational therapists in hospital specialist palliative care services. Implementation was evaluated through data comprised of reflective records of intervention delivery (n = 22), in-depth records of telephone implementation support meetings between research team members and co-researchers (n = 3), and in-depth evaluation meetings (n = 2). Data were qualitatively analysed using an NPT framework designed for intervention evaluation. Results Clinical co-researchers readily incorporated the Family-Focused Support Conversation into their everyday work. The intervention changed family support from being solely patient-focused, providing information about patient needs, to family-focused, identifying family concerns about the significance and implications of discharge and facilitating family-focused care. Co-researchers reported an increase in family members’ involvement in discharge decisions and end-of-life care planning. Conclusion The Family-Focused Support Conversation is a novel, evidenced-based and context specific intervention. Pilot implementation demonstrated the potential for the intervention to be used in acute hospitals to support family members during end-of-life care transitions. This subsequently informed a larger scale implementation study. Trial registration n/a.

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.

The Needs and Resources for Hospice Care in the Connecticut Prison System: A Feasibility Study

2002 ◽  
Vol 10 (3) ◽  
pp. 204-232 ◽  
Author(s):  
Nealy Zimmermann ◽  
Florence S. Wald ◽  
A. Siobhan Thompson
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Hospice Care ◽  
Community Resources ◽  
Correctional Staff ◽  
Life Care ◽  
Staff Members ◽  
System A ◽  
Aging Populations ◽  
State Prisons

Higher morbidity rates and aging populations are trends in our nation's prisons. In 1997 and 1998, correctional staff members and inmates were interviewed to assess their understanding of end-of-life care and the need for hospice in Connecticut state prisons. Community resources were identified for future partnerships in developing such services.

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