Mapping the characteristics & impacts of Terminal Lucidity in adults
What is the survey about?
Unusually enhanced mental clarity characterised by spontaneous and often animated changes in verbal and/or non-verbal behaviour, even in people with severely impaired brain conditions that would make such mental clarity unlikely, have been reported for more than 250 years. Since these unexpected surges of mental clarity have predominantly been reported from the last minutes, hours, or days before a person’s death, they have come to be termed Terminal Lucidity (TL). Until today, however, TL remains little understood.
More research is needed to better understand TL, as this will provide important details regarding the end-of-life stage of people who are terminally unwell, what their needs and those of family members and caregivers might be around this time, and how medical personnel can respond in appropriate ways to meet those needs. This study, which is funded by a European foundation, aims to address the need for more information about TL.
Who can take part?
To participate in this project, you will need to:
- Have witnessed a TL episode at some stage in your life.
- Be proficient in the English language.
- Have access to the internet to complete the online questionnaire.
- Be over the age of 18 years.
Although this study is being led by Natasha Tassell-Matamua, an Associate Professor and Director of the Centre for Indigenous Psychologies in the School of Psychology at Massey University in Aotearoa New Zealand, anyone in the world is able to take part, so long as they meet the above criteria.
What will you be asked to do?
If you agree to take part in this research, you are invited to complete an online questionnaire, which will take approximately 30-40 minutes to complete. The questionnaire will ask you questions about the TL episode you witnessed, the circumstances of the passing of the patient who had the TL episode, as well as the psychological impact of witnessing TL on your spiritual and religious beliefs, attitudes towards life and death, and nondual awareness. You do not need to access medical records of the person whose TL experience you witnessed, nor do you need to provide any identifiable information about that person or their family and/or caregivers. All responses should be based on your retrospective recollection of the event.
Participation is voluntary, and it is not expected that involvement in this research will expose you to any risk of harm. Recollection of TL experiences is often reported as being a positive experience, but we acknowledge that such recollection may also raise unanticipated emotions for some people. If this does occur for you while participating in this study, please contact Natasha directly, who will be able to discuss these emotions with you and provide advice around appropriate support networks that may be useful to connect with. Alternatively, here is an online brochure that may provide some initial helpful information, and please also feel free to visit or contact one of the following organisations:
There are no conflicts of interest identified in this study. At the completion of the questionnaire, you will be given the option to receive a courtesy copy of an article on TL, authored by the research team, as an acknowledgement of the time you have given to this research.
How will information be collected and used?
At the completion of the questionnaire, your responses will be automatically saved to an online password-protected data file. All your information will be anonymized, so we will not be able to link any of your responses back to you. You will not be asked to provide your name, the name of the person whose TL experience you witnessed or the name of their family/caregivers, or other identifiable details as part of the questionnaire responses. You do not need to access any medical records. All questions should be answered according to your retrospective recollection about the TL experience you witnessed. The only time you will be asked to provide your email address is at the completion of the questionnaire if you would like a summary of the findings emailed to you once the research is complete, and/or if you would like to receive a courtesy copy of the article – these, however, are optional.
What are your rights?
You are under no obligation to participate in this research, but if you choose to, you should know that you can:
- decline to answer any particular questions;
- withdraw from the research up to 7 days after you have submitted your responses. To enable this, you will be asked to create a unique identifier (this can be a name or number or a mixture of both), so we can link your data to your identifier. You do not need to provide your own name or any other details;
- ask any questions about the study at any time during participation, by contacting a member of our research team directly;
- provide information on the understanding that your name will not be used, the names of any person you might accidentally identify will not be used, nor will any identifiable information about you or the person whose TL experience you witnessed or their family/friends will not be used in any subsequent information about this research or linked to your responses in any way;
- be given access to a summary of the project findings when it is concluded, should you wish to receive one;
- receive a courtesy copy of an article about TL as acknowledgement of your time participating in this research.
What next?
If you are interested in completing the questionnaire, please click on the button at the bottom of this page to begin.
Who can I contact?
If you have any questions about the research, please feel free to contact Natasha directly, via email:
Associate Professor Natasha Tassell-Matamua, PhD
Centre for Indigenous Psychologies, School of Psychology, Massey University, Aotearoa New Zealand
N.A.Tassell-Matamua@massey.ac.nz
This project has been reviewed and approved by the Massey University Human Ethics Committee: Southern B, Application SOB 22/69. If you have any concerns about the conduct of this research, please contact Dr Gerald Harrison, Chair, Massey University Human Ethics Committee: Southern B, telephone 06 356 9099 x 83570, email humanethicsouthb@massey.ac.nz.