Systems-level determinants of end-of-life care
Research type
Research Study
Full title
Understanding factors that influence end-of-life decisions in older adults with dementia
IRAS ID
269782
Contact name
Elizabeth Dzeng
Contact email
Sponsor organisation
King's College London
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
3 years, 0 months, 1 days
Research summary
BACKGROUND:
For the 850,000 older adults living with dementia in the United Kingdom, there is a risk of receiving burdensome, overly aggressive end-of life-care in the hospital that is not consistent with their goals and values ("Goal-discordant care"). Burdensome hospital treatments can include intensive care unit (ICU) admission, resuscitation, multiple antibiotics, vasopressors, feeding tubes, and other life-sustaining treatments. People with dementia are particularly vulnerable to goal-discordant care due to the loss of mental capacity that comes with the progression of their disease.AIMS:
The objective of this project is to identify factors at the systems level that contribute to burdensome hospital care in older adults with dementia near the end of life.DESIGN:
Qualitative study with semi-structured in-depth interviews with key stakeholders at all levels of the healthcare system including carers, nurses, doctors (in medical subspecialties), social workers, and administrators. They will be asked about their experience caring for people with dementia near the end of life in their particular role. We will aim to recruit around 30 professionals at each hospital who work at King’s College Hospital (KCH) and Guy’s and St Thomas’ (GST) NHS Foundation Trusts and 15 carers from the United Kingdom.ANALYSIS:
Interviews will be coded and analyzed using thematic analysis. A codebook will be developed through group and individual coding.SIGNIFICANCE AND GOALS:
This study is significant because it will uncover previously uncharacterised cultural and systemic factors that contribute to burdensome hospital treatments. This can be used to develop targeted interventions to mitigate goal-discordant care in older adults with dementia. The long-term goal is to design, pilot, and implement hospital systems-level interventions that mitigate burdensome treatments for older adults with dementia near the end of life.REC name
East Midlands - Derby Research Ethics Committee
REC reference
20/EM/0226
Date of REC Opinion
1 Dec 2020
REC opinion
Further Information Favourable Opinion