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 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.

Dying at the Margins

2018 ◽  
Keyword(s):  
Best Practices ◽  
Inner City ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Broken Bones ◽  
The World

Dying at the Margins: Reflections on Justice and Healing for Inner-City Poor gives voice to a most vulnerable and disempowered population—the urban dying poor—and connects them to the voices of leaders in end-of-life care. Chapters written by these experts in the field discuss the issues that challenge patients and their loved ones, as well as offering insights into how to improve the quality of their lives. In an illuminating and timely follow-up to Dancing with Broken Bones, all discussions revolve around the actual experiences of the patients previously documented, encouraging a greater understanding about the needs of the dying poor, advocating for them, and developing best practices in caring. Demystifying stereotypes that surround poverty, Moller illuminates how faith, remarkable optimism, and an unassailable spirit provide strength and courage to those who live and die at the margins. As with his previous book, Dying at the Margins serves as a rallying call for not only end-of-life professionals, but compassionate individuals everywhere, to understand and respond to the needs of the especially vulnerable, yet inspiring, people who comprise the world of the inner-city dying poor.

scholarly journals Valuing end-of-life care: translation and content validation of the ICECAP-SCM measure

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Uta Gühne ◽  
Marie Dorow ◽  
Jessica Grothe ◽  
Janine Stein ◽  
Margrit Löbner ◽  
...  
Keyword(s):  
Supportive Care ◽  
End Of Life ◽  
Content Validity ◽  
End Of Life Care ◽  
Economic Evaluations ◽  
Life Care ◽  
Content Validation ◽  
The Uk ◽  
Care Measure

Abstract Background The evaluation of care strategies at the end of life is particularly important due to the globally increasing proportion of very old people in need of care. The ICECAP-Supportive Care Measure is a self-complete questionnaire developed in the UK to evaluate palliative and supportive care by measuring patient’s wellbeing in terms of ‘capability’. It is a new measure with high potential for broad and international use. The aims of this study were the translation of the ICECAP-Supportive Care Measure from English into German and the content validation of this version. Methods A multi-step and team-based translation process based on the TRAPD model was performed. An expert survey was carried out to assess content validity. The expert panel (n = 20) consisted of four expert groups: representative seniors aged 65+, patients aged 65+ living in residential care, patients aged 65+ receiving end-of-life care, and professionals in end-of-life care. Results The German version of the ICECAP-Supportive Care Measure showed an excellent content validity on both item- and scale-level. In addition, a high agreement regarding the length of the single items and the total length of the questionnaire as well as the number of answer categories was reached. Conclusions The German ICECAP-SCM is a valid tool to assess the quality of life at the end of life that is suitable for use in different settings. The questionnaire may be utilized in multinational clinical and economic evaluations of end-of-life care.

Hospital deaths dashboard: care indicators

2020 ◽  
pp. bmjspcare-2020-002223
Author(s):  
Ollie Minton ◽  
Charlotte Ede ◽  
Stephen Bass ◽  
Simon Tavabie ◽  
Amy Bourne ◽  
...  
Keyword(s):  
Data Collection ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Sample Collection ◽  
Core Elements ◽  
Hospital Teams ◽  
The Uk ◽  
Treatment Escalation

ObjectivesWe wanted to create a medical/nursing led data collection tool to allow for an ongoing audit of the quality of deaths in a teaching hospital. We wanted to be able to produce a visual summary to monitor our involvement, use of PRN medication, recognition of death, treatment escalation plans and communication aspects. We feel these are good surrogate indicators for quality end-of-life care.MethodsWe designed a purpose built spreadsheet which we have designed as an abbreviated version of the UK national audit tools. We involved a number of our core medical trainees to iterate the data collection so it could be done in a timely manner with a simple training guide. Our collective approach meant we have made this as straightforward as possible to roll out and maintain data collection.ResultsWe collected 100 cases over a period of 6 months (August 2019 to January 2020). We created a dashboard looking at the core elements of end-of-life care and found bar treatment escalation planning all aspects were completed the majority of the time with near 100% communication to relevant family and friends.ConclusionsOur sample collection tool provides a useful ongoing indicator for the quality of end-of-life care in the trust and to provide a timely infographic quarterly to feedback to interested members of the trust. We hope to be able to continue over some years to collate themes and trends. We would encourage other hospital teams to adopt our approach.

scholarly journals Dying well with dementia: Qualitative examination of end-of-life care

2011 ◽  
Vol 199 (5) ◽  
pp. 417-422 ◽  
Author(s):  
Vanessa Lawrence ◽  
Kritika Samsi ◽  
Joanna Murray ◽  
Danielle Harari ◽  
Sube Banerjee
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Comparison Method ◽  
Life Care ◽  
Care Needs ◽  
People With Dementia ◽  
The Uk ◽  
Bereaved Family ◽  
Cognitively Intact

BackgroundPeople with dementia often die badly, receiving end-of-life care of poorer quality than that given to those who are cognitively intact.AimsTo define good end-of-life care for people with dementia and identify how it can be delivered across care settings in the UK.MethodIn-depth interviews were conducted with 27 bereaved family carers and 23 care professionals recruited from the community, care homes, general hospitals and continuing care units. Data were analysed using the constant comparison method.ResultsThe data highlighted the challenge and imperative of ‘dementia-proofing’ end-of-life care for people with dementia. This requires using dementia expertise to meet physical care needs, going beyond task-focused care and prioritising planning and communication with families.ConclusionsThe quality of end-of-life care exists on a continuum across care settings. Together, the data reveal key elements of good end-of-life care and that staff education, supervision and specialist input can enable its provision.

scholarly journals Quality of End-of-Life Care Provided to Patients With Different Serious Illnesses

2016 ◽  
Vol 176 (8) ◽  
pp. 1095 ◽  
Author(s):  
Melissa W. Wachterman ◽  
Corey Pilver ◽  
Dawn Smith ◽  
Mary Ersek ◽  
Stuart R. Lipsitz ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Life Care

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 Validation of the Chinese version of the Care Evaluation Scale for measuring the quality of structure and process of end-of-life care from the perspective of bereaved family

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Juanjuan Zhao ◽  
Liming You ◽  
Hongmei Tao ◽  
Frances Kam Yuet Wong
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Mainland China ◽  
Chinese Version ◽  
Life Care ◽  
Quality Of Dying ◽  
Bereaved Family ◽  
Quality Of Structure ◽  
Care Evaluation

Abstract Background Assessing the quality of structure and process of end-of-life care can help improve outcomes. There was currently no valid tool for this purpose in Mainland China. The aim of this study is to validate the Chinese version of the Care Evaluation Scale (CES). Methods From January to December 2017, a cross-sectional online survey was conducted among bereaved family members of cancer patients from 10 medical institutes. The reliability of the CES was assessed with Cronbach’s α, and structural validity was evaluated by confirmatory factor analysis. Concurrent validity was tested by examining the correlation between the CES total score and overall satisfaction with end-of-life care, quality of dying and death, and quality of life. Results A total of 305 valid responses were analyzed. The average CES score was 70.7 ± 16.4, and the Cronbach’s α of the CES was 0.967 (range: 0.802–0.927 for the 10 domains). The fit indices for the 10-factor model of CES were good(root-mean-square error of approximation, 0.047; comparative fit index, 0.952; Tucker–Lewis index, 0.946; standardized root mean square residual, 0.053). The CES total score was highly correlated with overall satisfaction with medical care (r = 0.775, P < 0.01), and moderately correlated with patients’ quality of life (r = 0.579, P < 0.01) and quality of dying and death (r = 0.570, P < 0.01). In addition, few associations between CES total score and demographic characteristics, except for the family members’ age. Conclusions The Chinese version of the CES is a reliable and valid tool to evaluate the quality of structure and process of end-of-life care for patients with cancer from the perspective of bereaved family in Mainland China.

Quality of end-of-life care for Vietnam-era Veterans: Implications for practice and policy

Healthcare ◽  
2021 ◽  
Vol 9 (2) ◽  
pp. 100494
Author(s):  
Ann Kutney-Lee ◽  
Dawn Smith ◽  
Hilary Griffin ◽  
Daniel Kinder ◽  
Joan Carpenter ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Vietnam Era

scholarly journals Last Place of Care and End-of-Life Quality of Life in the United States: Evidence From a National Representative Data Set

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 17-17
Author(s):  
Yifan Lou ◽  
Nan Jiang ◽  
Katherine Ornstein
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
End Of Life ◽  
End Of Life Care ◽  
The United States ◽  
Life Care ◽  
Person Centered Care ◽  
Centered Care ◽  
The Relationship

Abstract Background: Quality of life (QoL) during last stage of life has raised expanded interests as an important aspect of person-centered care. Last place of care (LPC), refer to the last place decedents received their formal end-of-life care (EOLC), has been identified as a key indicator of older adults’ end-of-life QoL, but the relationship was understudied. This study explores the association between LPC and end-of-life QoL among American older adults. Methods: Data used seven waves of Last Month of Life data with a total sample of 3068 Medicare decedents in NHATS. Outcome is end-of-life QoL assessed by eleven measures on four domains: pain and symptoms management (SP), quality of healthcare encounter (HE), person-centered care (PC), and overall quality of care (QC). LPC was categorized into home, hospital, nursing home, and residential hospice. Multivariate logistic regression analyses were used to examine the relationship with covariates. Results: LPC varied by most demographic characteristics, except immigration status and education. Older adults whose LPC is hospital, compared to those who had home-care, were less likely to have great experiences on HE, PC, and QC. People dying at nursing homes are more likely to receive care meeting their dyspnea and spiritual needs. Residential hospice is negatively related to respected care, clear coordination, and keeping family informed, but are more likely to provide PS and spiritual care. Discussion: Home-based end-of-life care has certain advantages but still has room to improve on SP and religious concerns. Hospitals should keep reforming their service delivery structure to improve patients’ QoL.

Sign in / Sign up

Export Citation Format

Share Document