End-of-Life Decision Making: Exploring how patients, caregivers, and professionals make treatment decisions in brain cancer
Research Project Title
Medical Decision-Making Capacity Assessment in Brain Cancer Patients (Primary and Metastatic): The Co-Design of a Practice Guideline for Clinicians
Decision-making capacity; decision-making capacity assessment; brain cancer; brain metastasis; cognition; assisted decision making (capacity) act 2015
The ability to make decisions for oneself is called decision-making capacity. We consider it a right to make decisions about our own lives. However, some people may have their decision-making capacity questioned, where there is a concern that they may lack the mental ability to make informed decisions. One such group is people who have brain cancer. This is because tumours in the brain can cause mental difficulties including memory issues. This can affect their ability to make treatment decisions, for example. When these patients’ decision-making capacity is questioned, it triggers the need for an assessment. In Ireland, decision-making capacity laws have changed, under the Assisted Decision Making (Capacity) Act 2015. Therefore, current assessment practices used by healthcare workers must change to reflect the new law. However, currently, there is a lack of legally informed practical guidelines available to healthcare professionals for assessing capacity. This is an issue because people with brain cancer must make frequent treatment decisions from a large range of available complex treatment options.
Research Project aims and methods
This research will develop a legally informed practice guideline for assessing decision-making capacity in people with brain cancer that is informed by key stakeholders (cancer survivors, caregivers, healthcare professionals, solicitors). This will involve firstly uncovering what training and education healthcare professionals receive in assessing their patients’ decision-making capacity, and how accurately healthcare professionals can tell whether or not their patient has capacity. Next, stakeholders in decision-making capacity assessment will be interviewed about their knowledge of the new law, and their readiness/competence to implement it. Finally, the researcher and key stakeholders will develop a practice guideline for decision-making capacity assessment that is consistent with the law. The research team will involve patients and caregivers in designing the study, to ensure the acceptability, relevance, and practical usefulness of the output.
Public, patient and personal involvement (PPI)
The end-product of this research (a practice guideline for how to assess decision-making capacity among brain cancer survivors) will be for healthcare workers to use. However, it is essential that people with cancer and informal caregivers are involved at each stage of making this practice guideline so that it is sensitive, relevant, and acceptable to people with brain cancer and their families. The PPI collaborators will form a PPI advisory panel for this project. The panel will meet for a 1-hour meeting every 4-5 months, to advise on research questions, how to collect data, how to facilitate cancer survivor/caregiver participation, how to interpret some data, and how to disseminate results at each stage. The first stage of the research consists of doing a scoping review – this is where the researchers look at all the published studies/existing guidelines on this topic and identify gaps in our knowledge. PPI collaborators have been asked to help develop the questions for this review and guide what studies we include/exclude. Next, the research team will interview key stakeholders (cancer survivors, caregivers, healthcare professionals, solicitors) about their knowledge and attitudes towards the new decision-making capacity law. PPI collaborators will assist with the vital task of formulating the interview questions (content/topic of the questions/phrasing) for participants and advising on how to facilitate cancer survivors and caregivers in participating (where to interview them, how long the interview should be, etc). PPI collaborators may also assist with data analysis for the survivor interviews (interpreting what the survivors said). Finally, the research team will recruit cancer survivors, caregivers, healthcare professionals, and solicitors to participate in co-design of the practice guideline for decision-making capacity assessment. Co-design is a type of research where key stakeholders come together to find a solution to a shared problem. This process will take place over 12 months with key stakeholders coming together to decide what information identified in the previous steps should be included in the guideline/how to present the information. Co-design is separate from PPI and caregivers and survivors involved in the co-design are participants and will be separate from the PPI collaborators on the PPI advisory panel. PPI collaborators will advise on how to structure the co-design meetings, how often to meet, how to facilitate cancer survivor and caregiver participation (so their views are considered on an equal basis with healthcare professionals/solicitors). PPI Collaborators will be invited to co-present findings at a national conference.
Project started: September 2022
Expected end date: September 2026
Ms. Lorna Gurren, School of Psychology, Dublin City University
Dr. Lisa Fitzgerald, Assistant Professor in Psychology, School of Psychology, Dublin City University
Dr. Lorraine Boran, Assistant Professor in Psychology, School of Psychology, Dublin City University
Dr. Louise Hopper, Assistant Professor in Psychology, School of Psychology, Dublin City University
Funding & Support
The patient and public involvement in this research is funded by the Irish Cancer Society PPI Award 2022.
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