Ensuring voices are heard when decisions matter most
When someone is approaching the end of life, their ability to make informed choices may become impaired. Yet, knowing their values, preferences, and wishes remains vital—not just for medical decisions, but also to ensure that research is conducted in an ethically and inclusive way. There can be several barriers to conducting research in a palliative care setting, and navigating challenges in communication and consent is a significant one.
Understanding Capacity and Consent
Capacity is decision-specific and time-sensitive. A person may retain capacity to make some choices but not others, and it can fluctuate—especially in serious illness or neurocognitive conditions like dementia, delirium, or advanced disease.
CAPER: Addressing Barriers in End-of-Life Research
The CAPER (Consent, Advocacy & Proxies in End-of-Life Research) project is part of NHS England’s Research Engagement Network and focuses on making research more accessible to adults with capacity or communication challenges near the end of life, specifically by developing resources, training and advocacy to involve people meaningfully in research, often through the support of proxy decision-makers or accessible communication strategies.
Inclusive Approaches
Embedding public, patient, and community involvement (PCIEP) is particularly important in a palliative care context to ensures that research is meaningful, reflective of real-world voices, and sensitive to the specific challenges that people living with incurable disease, and their carers face towards the end of life. The CAPER project has partnered with public representatives, those with lived experience, and VSCE organisations such as the Ann Robson Trust and the Motor Neurone Disease Association to co-produce work in this area.
You can find out more from the links below:
If you are interested in joining a research network which aims to build inclusive practices around mental capacity and consent in palliative care research, please use the Contact page to get in touch, or email [email protected]
Background Reading (unrelated to this project)
When someone is approaching the end of life, their ability to make informed choices may become impaired. Yet, knowing their values, preferences, and wishes remains vital—not just for medical decisions, but also to ensure that research is conducted in an ethically and inclusive way. There can be several barriers to conducting research in a palliative care setting, and navigating challenges in communication and consent is a significant one.
Understanding Capacity and Consent
Capacity is decision-specific and time-sensitive. A person may retain capacity to make some choices but not others, and it can fluctuate—especially in serious illness or neurocognitive conditions like dementia, delirium, or advanced disease.
CAPER: Addressing Barriers in End-of-Life Research
The CAPER (Consent, Advocacy & Proxies in End-of-Life Research) project is part of NHS England’s Research Engagement Network and focuses on making research more accessible to adults with capacity or communication challenges near the end of life, specifically by developing resources, training and advocacy to involve people meaningfully in research, often through the support of proxy decision-makers or accessible communication strategies.
Inclusive Approaches
Embedding public, patient, and community involvement (PCIEP) is particularly important in a palliative care context to ensures that research is meaningful, reflective of real-world voices, and sensitive to the specific challenges that people living with incurable disease, and their carers face towards the end of life. The CAPER project has partnered with public representatives, those with lived experience, and VSCE organisations such as the Ann Robson Trust and the Motor Neurone Disease Association to co-produce work in this area.
You can find out more from the links below:
- Understanding the scale of exclusion for people unable to consent to research towards the end of life: a scoping review: http://spcare.bmj.com/content/15/Suppl_1/A2.2.abstract
- Exploring the roles and experiences of proxies in research decision-making processes: a scoping review and narrative synthesis with relevance to palliative care: https://osf.io/a95md
- Public Involvement Impact Case Study—involving people with impaired capacity nearing the end of life in research NIHR ARC East of England.
- Guide for research ethics committees reviewing research involving adults lacking capacity to consent - the guide was commissioned by the Research Office of NHS Cambridgeshire and Peterborough ICB, with funding from DHSC / NHS England Research Engagement Network development programme for integrated care systems.
- Use of accessible formats and supported decision-making in research decision making—easy-read information, visual aids, or non-verbal tools like Talking Mats help people engage as far as they are able: Assent Guidance
If you are interested in joining a research network which aims to build inclusive practices around mental capacity and consent in palliative care research, please use the Contact page to get in touch, or email [email protected]
Background Reading (unrelated to this project)
- MORECare Capacity Project: https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-020-01654-2