Research and policy about end of life care for LGBT people in the UK

2017 ◽  
pp. 173-186
Author(s):  
Kathryn Almack ◽  
Tes Smith ◽  
Bridget Moss
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Lgbt People ◽  
The Uk ◽  
Research And Policy

scholarly journals When “Good Enough” Isn’t Good Enough: Interdisciplinary Perspectives on Caring for Adults Using Substances at the End of Life

2021 ◽  
Author(s):  
Lorna Templeton ◽  
Sarah Galvani ◽  
Marian Peacock
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Structured Interview ◽  
Life Care ◽  
Snowball Sampling ◽  
Policy And Practice ◽  
Template Analysis ◽  
Health And Social Care ◽  
The Uk ◽  
Key Terms

AbstractThis paper draws on data from one strand of a six-strand, exploratory study on end of life care for adults using substances (AUS). It presents data from the key informant (KI) strand of the study that aimed to identify models of practice in the UK. Participant recruitment was purposive and used snowball sampling to recruit KIs from a range of health and social care, policy and practice backgrounds. Data were collected in 2016–2017 from 20 KIs using a semi-structured interview approach. The data were analysed using template analysis as discussed by King (2012). This paper focusses on two of seven resulting themes, namely “Definitions and perceptions of key terms” in end of life care and substance use sectors, and “Service commissioning and delivery.” The KIs demonstrated dedicated individual practice, but were critical of the systemic failure to provide adequate direction and resources to support people using substances at the end of their lives.

scholarly journals Primary care physicians’ educational needs and learning preferences in end of life care: A focus group study in the UK

2017 ◽  
Vol 16 (1) ◽  
Author(s):  
Lucy Ellen Selman ◽  
Lisa Jane Brighton ◽  
Vicky Robinson ◽  
Rob George ◽  
Shaheen A. Khan ◽  
...  
Keyword(s):  
Primary Care ◽  
Focus Group ◽  
End Of Life ◽  
End Of Life Care ◽  
Primary Care Physicians ◽  
Educational Needs ◽  
Learning Preferences ◽  
Life Care ◽  
Focus Group Study ◽  
The Uk

scholarly journals Nursing care at end of life: a UK-based survey of the deaths of people living in care settings for people with intellectual disability

2018 ◽  
Vol 24 (6) ◽  
pp. 366-382 ◽  
Author(s):  
Ruth Northway ◽  
Stuart Todd ◽  
Katherine Hunt ◽  
Paula Hopes ◽  
Rachel Morgan ◽  
...  
Keyword(s):  
Intellectual Disability ◽  
End Of Life ◽  
Nursing Care ◽  
End Of Life Care ◽  
Life Care ◽  
Care Providers ◽  
Nursing Support ◽  
Respiratory Problems ◽  
The Uk ◽  
The Impact

Background People with intellectual disability are believed to be at risk of receiving poor end-of-life care. Nurses, given their advocacy role and duty to provide compassionate end-of-life care, have the potential to change this situation but research regarding this aspect of their role is limited. Aims This paper thus seeks to answer the question ‘How and when are nurses involved in providing care at end of life for people with intellectual disability?’ Methods A total of 38 intellectual disability care providers in the UK providing support to 13,568 people with intellectual disability were surveyed. Data regarding 247 deaths within this population were gathered in two stages and subsequently entered into SPSSX for analysis. Results Findings revealed that the majority of deaths occurred between the ages of 50 and 69 years, the most commonly reported cause of death being respiratory problems. Both community and hospital-based nurses were involved in supporting individuals during their final 3 months of life, and sometimes more than one type of nurse provided support to individuals. Generally nursing care was rated positively, although room for improvement was also identified. Conclusions Nurses are involved in supporting people with intellectual disability at end of life and appropriate education is required to undertake this role. This may require change in curricula and subsequent research to determine the impact of such change on nursing support to this population.

Managing End-of-Life Care

2012 ◽  
Author(s):  
John W. Albarran ◽  
Marika Hills
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Care Delivery ◽  
Symptom Relief ◽  
Death And Dying ◽  
Past Century ◽  
Life Care ◽  
Care Needs ◽  
Definition Of ◽  
The Uk

This chapter addresses the fundamental nursing role of managing end-of-life care. Death is as fundamental a part of life as living, and while caring for a dying patient and their family is demanding, complex, and emotionally exhausting, it can also be a gratifying and privileged experience for nurses. Specifically, nurses have a centre-stage role in leading and informing care delivery at the end of life. Care will typically embrace assessing the needs of the patient and family, providing symptom relief and comfort care, and providing cultural and spiritual support. Additionally, caring functions should also extend following death to caring for the deceased in a dignified manner and supporting the newly bereaved, demonstrating genuine concern, compassion, and effective communication skills (Hills and Albarran, 2010a; Maben et al., 2010). To examine the key themes and challenges of practice, it is important to understand the political, professional and societal influences, and contextual nature of death and dying in the UK. At present, there is neither a clear nor universally accepted definition of end-of-life care, but it is generally understood to be the care of a person who is identified as having failing health and who is in a progressive state of decline (Shipman et al., 2008). Establishing the last phase of a patient’s life can be a difficult and complex process, and this might occur:…● after the diagnosis of a life-limiting condition; ● during the transition or deterioration of a chronic disease illness; ● when there is an increasing frailty combined with greater dependence on care provision, particularly in the older adult; ● following a sudden infective episode, cardiac event, or a life-threatening accident….The last phase of end-of-life care is referred to as the dying phase. Consideration of the end-of-life care needs of people with chronic terminal conditions should begin at diagnosis, and must embrace after-death care and family support. Over the past century, progress and advancement in disease management, together with improvements in living standards, have resulted in changes to the national death profile, with currently two-thirds of the 0.5 million annual deaths in the UK occurring in people over 75 years of age.

Palliative and end-of-life care for people with learning disabilities

2019 ◽  
pp. 777-784
Keyword(s):  
Learning Disabilities ◽  
Intellectual Disability ◽  
Learning Disability ◽  
End Of Life ◽  
Early Onset ◽  
End Of Life Care ◽  
Life Care ◽  
The World ◽  
The Uk

This chapter highlights some of the issues and challenges which exist in the provision of palliative and end-of-life care for people with learning disabilities and how some of these can be addressed. The challenges fall into four key areas: assessment, communication, consent, and bereavement. The reader is also signposted to websites and resources which are helpful in caring for people with learning disability at the end of their life. Concerns exist around choice and the quality of end-of-life care that people with learning disabilities may be offered. A number of different terms have evolved over the years for ‘learning disability’. Currently this term is used in the UK, but in Europe and in other parts of the world, the term ‘intellectual disability’ is used. Internationally there is a consensus that a learning disability can be identified when the following criteria are present: intellectual impairment (known as reduced IQ), social or adaptive dysfunction combined with reduced IQ, and early onset. It is thought that around 2.5% of the population in the UK has a learning disability, but it has also been predicted that this may increase by 1% per year over the next number of years.

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 COMMUNICATION AS CARE AT END OF LIFE: AN EMERGING ISSUE FROM AN EXPLORATORY ACTION RESEARCH STUDY OF RENAL END-OF-LIFE CARE FOR ETHNIC MINORITIES IN THE UK

2014 ◽  
Vol 40 (S1) ◽  
pp. 23-29 ◽  
Author(s):  
Emma Wilkinson ◽  
Gurch Randhawa ◽  
Edwina A. Brown ◽  
Maria Da Silva Gane ◽  
John Stoves ◽  
...  
Keyword(s):  
Action Research ◽  
End Of Life ◽  
Ethnic Minorities ◽  
End Of Life Care ◽  
Research Study ◽  
Life Care ◽  
Action Research Study ◽  
The Uk

scholarly journals ‘It’s a hard conversation to have’. Healthcare professionals’ views concerning advance care discussions with young people affected by life-limiting neuromuscular diseases: an interview study

2017 ◽  
Vol 9 (1) ◽  
pp. e9-e9
Author(s):  
Andy Hiscock ◽  
Stephen Barclay
Keyword(s):  
Young People ◽  
End Of Life ◽  
End Of Life Care ◽  
Healthcare Professionals ◽  
Neuromuscular Diseases ◽  
Individual Case ◽  
Life Care ◽  
Care Plans ◽  
Advance Care ◽  
The Uk

ObjectiveLife-limiting neuromuscular disease, such as some of the muscular dystrophies, are often diagnosed in early childhood: when death comes, commonly in the second or third decade of life, patients rarely have advance care plans in place or documented end-of-life care preferences. There is very limited literature concerning the discussions about end-of-life plans healthcare professionals have with young people affected by life-limiting neuromuscular diseases. The aim of this study was to investigate the views and experiences of healthcare professionals concerning having discussions about advance care plans and end-of-life care with teenagers and young adult patients affected by life-limiting neuromuscular diseases.MethodsSemistructured interviews with a maximum variety sample of nine professionals involved in the care of young people with life-limiting neuromuscular diseases in one region of the UK.ResultsWhile recognising the inevitable progression of the conditions, there was no consensus among interviewees concerning best approaches to discuss end-of-life care plans. Several environmental and personal barriers were identified that lead to avoidance of the emotionally challenging and difficult conversations.ConclusionsCommunity-based professionals with well-established relationships with patients and families may be best placed to take the lead and coordinate discussions, but individual case-by-case preferences need to be carefully considered.

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