Research helps us to improve best practice and clinical decision-making, and develop and test new treatments and services in palliative and end-of-life care. Rachel is our new Research Practitioner, working as part of the Academic Unit of Palliative Care team to manage research projects and encouraging participation from patients, carers and healthcare professionals.

In this blog, she explains more about her role, the importance of palliative care research and the challenges involved:

“Hello, my name is Rachel. I started working as a Research Practitioner at St Gemma’s in September 2023. My main roles within St Gemma’s are to build up a research culture, increase our involvement in research and to manage any studies that we are involved in. I’ll be working closely with universities, on the Hospice wards and out across the community speaking to patients and caregivers about our projects. We are always looking at ways to innovate and improve and the patient’s experience.

As a research practitioner in palliative care, I appreciate the power of innovation and collaboration in driving meaningful change. Whether exploring novel interventions to alleviate suffering, or developing innovative approaches to advance care planning, research offers endless opportunities to improve the lives of those affected by serious illness.

In collaboration with clinicians, patients, caregivers and fellow researchers, I aim to conduct patient-centred research that addresses the diverse needs and preferences of the palliative care population. By working together, we can leverage our collective expertise and experiences to generate new knowledge, inform practice, and ultimately improve the quality of care for individuals facing life-limiting illnesses.

Palliative care research has some unique challenges, in particular due to the complexity of palliative care interventions and outcomes. For example, clinical trials for pharmaceuticals have clear endpoints, while evaluating the effectiveness of palliative care interventions often involves subjective measures and multidimensional outcomes, such as quality of life and patient satisfaction.

Conducting research in palliative care also requires additional sensitivity and ethical considerations due to the vulnerable nature of the individuals involved. Respecting patients’ autonomy, ensuring informed consent, and addressing end-of-life concerns are paramount in palliative care research.

Despite these challenges, research remains a cornerstone of advancing palliative care practice and policy, and will allow us to continue to provide the best possible care at St Gemma’s and share this knowledge locally, nationally and internationally.

By thoroughly evaluating interventions and identifying best practices, research enables healthcare providers to deliver evidence-based care that aligns with patients’ preferences and values. Moreover, research in palliative care contributes to shaping healthcare policies, fostering interdisciplinary collaboration, and enhancing the education and training of healthcare professionals.

As I reflect on my journey as a research practitioner in palliative care, I’m inspired by the profound impact that research can have on the lives of patients and families during some of their most challenging moments. I am committed to advancing the science and practice of palliative care through research.

I will be collaborating with the University of Leeds and other universities to be a clinical site for their research, and will be encouraging staff within St Gemma’s Hospice to develop their own ideas into research projects. Together, we can continue to strive for excellence in care and ensure that individuals receive the support and comfort they deserve on their journey towards the end of life.”