Enabling dying patients to take part in research using advanced consent methodology
Creators: name: Stanley, Sarah
name: Nwosu, Amara Callistus
name: Chapman, Laura
Publisher: name: AMRC Open Research
Year: 2021

description: <b>Background</b><br> Palliative care research is essential to establish evidence based models of care that are required to improve outcomes for people with terminal illness.<sup> </sup>Obtaining informed consent for participation in hospice and palliative care clinical trials is an ongoing challenge faced by researchers<br> <br> <b>Aim</b><br> By consenting patients in advance, we aimed to improve research opportunities in the last week of life.<br> <br> <b>Methods</b><br> Since 2017, an advanced consent methodology was used to recruit participants to two end of life care studies (UK National Institute for Health Research Portfolio study) from a specialist palliative care inpatient unit. Potential participants with capacity were given information by a researcher, which outlined the study aims and the advanced consent process. This included explanation of the end of life assessments. A ‘Personal consultee’ was identified to act as a point of contact should the participant lose capacity to consent to further assessments. Once recruited to the study the researcher ensured regular contact with both participant and consultee throughout their inpatient stay.<br> <br> <b>Results</b><br> A total of 101 people have participated in these studies over a 2-year period. The high recruitment rate (83%, n= 101/121) demonstrates a willingness of the hospice to take part in end of life research; this is consistent with previous work about palliative care research participation. Feedback has been positive with patients, caregivers and staff through the entire research process.<br> <br> <b>Conclusions</b><br> The advance consent process is an effective way to facilitate research participation at the end of life. People with palliative care needs want to participate in studies which include assessments in the dying phase of their illness. Caregivers have shown great desire to support research. Researchers should consider the potential to use the advance consent process to improve research participation for people who are dying.<br> <br> <br> <b>References</b> Higginson IJ. Research challenges in palliative and end of life care. <i>BMJ Supportive &amp; Palliative Care</i> 2016; 6: 2-4. DOI: 10.1136/bmjspcare-2015-001091 Agar, M., Ko, D.N., Sheehan, C.Chapman, M. and Currow, D.C., 2013. Informed consent in palliative care clinical trials: challenging but possible. Journal of Palliative Medicine, 16(5), 485-491. Hardy J: Consent for trials in palliative care. Lancet 2000;356:S44. Rees E: The ethics and practicalities of consent in palliative care research: An overview. Int J Palliat Nurs (Review) 2001;7(10):489–492.) Nwosu AC, Mayland CR, Mason S, et al. Patients want to be involved in end-of-life care research. <i>BMJ Support Palliat Care</i> 2013; 3: 457. 2014/06/21. DOI: 10.1136/bmjspcare-2013-000537. Henderson M, Addington-Hall JM, Hotopf M. The willingness of palliative care patients to participate in research. J Pain Symptom Manage. 2005;<b>29</b>:116-8. Preston NJ, Payne S, Salt S<i>, et al </i>ARE PALLIATIVE CARE RESEARCH SAMPLES BIASED? RESULTS FROM INTERVIEWS WITH EXPERIENCED PALLIATIVE CARE STAFF BMJ Supportive &amp; Palliative Care 2013;3:130.