The right to voice: Dementia and voluntary assisted dying research
By Adrienne Matthys, AAG member and PhD candidate, Charles Sturt University School of Social Work and Arts / Ageing Well Research Group
It is a pleasure to share with you all my PhD research project exploring the meaning of voluntary assisted dying (VAD) to people living with dementia.
I write this blog as a call to action to the gerontology research community. We have a responsibility to ensure that the voices of people living with dementia are at the centre of this conversation, that we stand alongside them while they share their experiences with our community, that VAD policy is rights-based and research-informed, and that we continue to advocate for reforms which provide real choice in end-of-life care for all people living with dementia, irrespective of their views towards VAD.
Since commencing my doctoral journey, I have discovered that there is a growing conversation about access to VAD for people living with dementia, meaning there is a need for research that centres their views. While the research community has made great gains in inclusive research which upholds the right of older people to contribute to research that affects their lives, we still face challenges extending research to people living with dementia, particularly their inclusion in research focused on heavily contested social issues like VAD.
As I progress through the project, the journey continues to be sobering. The challenges I am experiencing with administration of the study lie at the heart of what so many people living with dementia experience: capacity-related stigma, ageism, hierarchical paternalism, and the gatekeeping that comes with both a dementia diagnosis, and end-of-life decision making.2,5,6
In recent end-of-life care research, gatekeeping is linked to the perceived burden of research on both the person living with the terminal condition and their care partners.6 These beliefs are compounded in dementia research, where people living with dementia are known to be excluded from research participation based on stereotypes surrounding capacity to understand the research, and to give informed consent to participate in the research.5 Moreover, research participation is stymied by the biomedical model, which all too often practices ‘power as control’.1 Together, these beliefs posture people living with dementia as ‘too vulnerable’ to be included in VAD research.
But are people living with dementia really ‘too vulnerable’ to be included in VAD research? I argue not. In contemporary dementia research, there is a shift towards the view of capacity as a spectrum, focusing on capability as opposed to vulnerability, and what each individual person can do in a given situation.3
From my experience working alongside people living with dementia, VAD research is an area where many people have the capability to contribute, if they choose to do so. This is at odds with the biomedical view of dementia, which assumes an ‘innate vulnerability’ used to deny them their right to voice in a conversation where they are a key stakeholder.4 As potential end services users, people living with dementia will ultimately suffer the consequences of the decisions we make without them. It is for this reason that we need to stand with them as we take this journey together, as allies and advocates for their right to voice, and their right to choice and safety in access to end-of-life care that meets their individual needs.
I would like to finish by thanking the people who have shared their living experiences of VAD and dementia with me, and our Dementia Advocate for the study. Your contributions are highly valued, and I look forward to sharing the knowledge we have co-created with the community.
If you would like to participate in this project, I would love to hear from you.
References
1. Behuniak, S.M. (2010). Toward a political model of dementia: Power as compassionate care. Journal of Aging Studies, 24(4), 231-240. https://doi.org/10.1016/j.jaging.2010.05.003 / 2. Bloomer, M.J., Hutchinson, A.M., Brooks, L., & Botti, M. (2018). Dying persons’ perspectives on, or experiences of, participating in research: An integrative review. Palliative Medicine, 32(4), 851-860. https://doi.org/10.1177/0269216317744503 / 3. Evans, C.J., Yorganci, E., Lewis, P., Koffman, J., Stone, K., Tunnard, I., Wee, B., Bernal, W., Hotopf, M., & Higginson, I.J. (2020). Processes of consent in research for adults with impaired mental capacity nearing the end of life: Systematic review and transparent expert consultation (MORECare_Capacity statement). BMC Medicine, 18(221), 1-55. https://doi.org/10.1186/s12916-020-01654-2 / 4. McLaughlin, K. (2021). Critical theory and social work: Historical context and contemporary manifestations. In M. Payne & E. Reith-Hall (Eds.), The Routledge Handbook of Social Work Theory (pp. 308-318). Routledge. / 5. O’Connor, C.M.C., Liddle, J., O’Reilly, M., Meyer, C., Cartright, J., Chisholm, M., Conway, E., Fielding, E., Fox, A., MacAndrew, M., Schnitker, L., Travers, C., Watson, K., While, C., & Bail, K. (2021). Advocating the rights of people with dementia to contribute to research: Considerations for researchers and ethics committees. Australasian Journal on Ageing, 41, 309-313. https://doi.org/10.1111/ajag.13023 / 6. Waite, J., Poland, F., & Charlesworth., G. (2019). Facilitators and barriers to co-research by people with dementia and academic researchers: Findings from a qualitative study. Health Expectations, 22(4), 761-771. https://doi.org/10.1111/hex.12891
This blog is also available as a pdf.