Promoting informed decision making through advance care planning
Research type
Research Study
Full title
Promoting informed decision making and effective communication through advance care planning for people living with dementia and their family carers
IRAS ID
150085
Contact name
Kevin Brazil
Contact email
Sponsor organisation
Queen's University Belfast
Clinicaltrials.gov Identifier
Research summary
The patient's right to self-determination has become a key ethical principle in dementia care. Advance Care Planning (ACP) is in line with the principle of self-determination where an ACP document is a written or a verbal record of a person's choices about their future medical care. Regrettably, given the relative importance of ACP for people living with dementia, the available research demonstrates that the provision of ACP for persons living with dementia is poor.
In Western countries a substantial number of individuals living with dementia are admitted to a Nursing Home before death and are often transferred to hospitals where aggressive and overly burdensome treatments are provided. In this situation family carers are often required to make many difficult and emotionally burdensome decisions about whether or not to proceed with life sustaining treatments which may lead to death when they are not prepared to make such decisions.
The purpose of this study is to evaluate the application of a best practice ACP model for individuals living with dementia in a sample of nursing homes in Northern Ireland. Specific outcomes examined will include:
Family carer satisfaction in decision making regarding options for care;
Family carer's overall satisfaction with nursing home care;
Assessment of comfort care in nursing homes for persons living with dementia;
Impact the ACP model has on the use of acute care services.As part of this study, the lived experience of family carers required to make treatment decisions on behalf of a family member living with dementia will be explored.
As we have identified this study as exploratory based on Medical Research Council (MRC) guidance, the study will also assess the feasibility of the intervention in addition to the study design and statistical considerations that will contribute to the development of a national trial.
REC name
HSC REC A
REC reference
14/NI/0082
Date of REC Opinion
3 Jul 2014
REC opinion
Further Information Favourable Opinion