Background The need for research is a priority area in palliative care. Palliative care research is essential to establish evidence based models of care that are required to improve outcomes for people with terminal illness (Higginson, 2016). Obtaining informed consent for participation in hospice and palliative care clinical trials is an ongoing challenge faced by researchers (Agar, Ko, Sheehan, Chapman et al., 2013; Hardy, 2000; Rees, 2001).
Aim By consenting patients in advance, we aimed to improve research opportunities in the last week of life.
Methods Advanced consent methodology was used to recruit participants to a National Institute for Health Research Portfolio study. Potential participants with capacity were given verbal and written information by a researcher outlining the aims of the study and the advanced consent process, looking to continue research into the last week of life.
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.
Hospice staff were regularly updated on research processes, with an aim to minimise gate keeping (Preston, Payne, Salt, Griggs et al., 2013).
Results The majority of patients agreed to provide consent in advance, leading some to have assessments in the last week of life. This is consistent with previous work reporting patients’ willingness to participate in research (Nwosu, Mayland, Mason, Varro et al., 2013; Henderson, Addington-Hall, Hotopf, 2005). Regular communication ensures that caregivers are kept informed. Feedback has been positive when performing assessments in the last week of life, with focus on improving future care.
Conclusions Our experiences have demonstrated that palliative patients want to participate in research up to and including the last week of life. Caregivers have shown great desire to support research.
These findings could encourage other palliative care settings to recruit patients to research studies using advanced consent, thus informing policy for best evidence based care at the end of life.
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