End-of-Life Care and Dying: Issues Raised by Staff Supporting Older People with Intellectual Disability in Community Living Services

2012 ◽  
Vol 25 (6) ◽  
pp. 571-583 ◽  
Author(s):  
Michele Wiese ◽  
Roger J. Stancliffe ◽  
Susan Balandin ◽  
Glennys Howarth ◽  
Angela Dew
Keyword(s):  
Intellectual Disability ◽  
Older People ◽  
End Of Life ◽  
End Of Life Care ◽  
Community Living ◽  
Life Care

Older people dying with dementia: a nationwide study

2012 ◽  
Vol 24 (10) ◽  
pp. 1581-1591 ◽  
Author(s):  
Koen Meeussen ◽  
Lieve Van den Block ◽  
Michael Echteld ◽  
Nicole Boffin ◽  
Johan Bilsen ◽  
...  
Keyword(s):  
Older People ◽  
End Of Life ◽  
Elderly People ◽  
Cognitive Abilities ◽  
End Of Life Care ◽  
Large Scale ◽  
Care Home ◽  
Life Care ◽  
Early Palliative Care ◽  
People With Dementia

ABSTRACTBackground: Large-scale nationwide data describing the end-of-life characteristics of older people with dementia are lacking. This paper describes the dying process and end-of-life care provided to elderly people with mild or severe dementia in Belgium. It compares with elderly people dying without dementia.Methods: A nationwide retrospective mortality study was conducted, via representative network of general practitioners (GPs) in 2008 in Belgium, with weekly registration of all deaths (aged ≥ 65) using a standardized form. GPs reported on diagnosis and severity of dementia, aspects of end-of-life care and communication, and on the last week of life in terms of symptoms that caused distress as judged by the GP, and the patients’ physical and cognitive abilities.Results: Thirty-one percent of our sample (1,108 deaths) had dementia (43% mildly, 57% severely). Of those, 26% died suddenly, 59% in care home, and 74% received palliative treatment, versus 37%, 19%, and 55% in people without dementia. GP–patient conversations were less frequent among those with (45%) than those without (73%) dementia, and 11% of both groups had a proxy decision-maker. During the last week of life, physical and psychological distress was common in both groups. Of older people with dementia, 83% were incapable of decision-making and 83% were bedridden; both significantly higher percentages than found in the group without dementia (24% and 52%).Conclusions: Several areas of end-of-life care provision could be improved. Early communication and exploration of wishes and appointment of proxy decision-makers are important components of an early palliative care approach which appears to be initiated too infrequently.

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.

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.

scholarly journals Providing quality end-of-life care to older people in the era of COVID-19: perspectives from five countries

2020 ◽  
Vol 32 (11) ◽  
pp. 1345-1352 ◽  
Author(s):  
Maria I. Lapid ◽  
Raymond Koopmans ◽  
Elizabeth L. Sampson ◽  
Lieve Van den Block ◽  
Carmelle Peisah
Keyword(s):  
Older People ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care

scholarly journals 309 The Growing Need for Advance Care Planning Discussion: An Admission to Die for?

2019 ◽  
Vol 48 (Supplement_3) ◽  
pp. iii17-iii65
Author(s):  
Aoife McFeely ◽  
Cliona Small ◽  
Susan Hyland ◽  
Jonathan O'Keeffe ◽  
Graham Hughes ◽  
...  
Keyword(s):  
Palliative Care ◽  
Older People ◽  
End Of Life ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Advance Care ◽  
Early Decision ◽  
One Year ◽  
The Right

Abstract Background Older people living in nursing homes (NHs) are among the most frail and vulnerable in our community. Over the last 5 years, a review of our local NH admission database revealed a 7% increase in the number of unscheduled hospital attendances from NHs (1015 in 2012/13 vs 1435 in 2016/17). Additionally we have seen an increase in the number of NH residents experiencing ≥2 unscheduled re-admissions within one year (21.1% in 2012/13 vs 30.45% in 2016/17). Our aim was to examine the proportion of patients from NHs who died within 24 hours of presentation, prompting a review of methods that could prevent inappropriate hospital transfers and promoting dignified and comfortable end of life care. Methods A prospective database was collected between 01/01/2016 - 31/12/2017. This recorded all emergency admissions of older people from NHs recording length of stay, readmission rates and mortality. The data was retrospectively analysed, looking specifically at patients who died in hospital ≤ 24 hours Results Of 1435 ED admissions, 49 patients (3.4%) died in hospital ≤ 24 hours after presentation. Of these, 31 patients (61%) died in palliative care suites. 8 patients (16.3%) died in the ED. Conclusion A small number of NH residents presenting to our hospital died within 24 hours. A large proportion of these patients died in a palliative care suite, suggesting poor prognosis was identified rapidly after presentation. We wonder if some of these hospital transfers were avoidable and could certain patients have experienced less disruptive deaths in their NHs? Advanced Care Planning can be difficult for all involved. However, it plays an essential role in ensuring people receive the right care, at the right time, in the right place, from the right team. We support the collaborative roles of a palliative care CNS or Geriatric ANP, and integration with NH Outreach services, to facilitate early decision-making and promote better end of life care.

Older people and end-of-life care

2009 ◽  
pp. 76-97
Author(s):  
Mo Ray ◽  
Miriam Bernard ◽  
Judith Phillips
Keyword(s):  
Older People ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care
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