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Beyond the debate: centring people in conversations about dying

Por: Tatterton · M. J. · Hayes · A.

Assisted dying is changing. Countries around the world, including the UK,1 are considering changing the law, or have legalised assisted death.2 This editorial does not focus on legal, moral or ethical issues that surround assisted dying, but on the people at the centre of the debate: people with life-limiting conditions and their families.

The opportunity to write this editorial could not be more timely, having recently been invited to join the Independent Expert Panel of the UK Government’s Health and Social Care Committee, evaluating the state of palliative care in England.3 Our focus was palliative and end of life care, and not assisted dying; however, during discussions, we did talk about the importance of death literacy, specifically the lack of our willingness to talk about death and dying, even by and with people who have life-limiting conditions.

There is a wealth of research...

Supporting parents and families of children with life-limiting conditions: the impact of advance care planning

Por: Moody · A. · Stocks · K. L. · Tatterton · M. J.

Commentary on: Lyon, M. E., Fraser, J. L., Thompkins, J. D., et al (2024). Advance Care Planning for Children With Rare Diseases: A Pilot RCT. Pediatrics, 153(6), e2023064557. https://doi.org/10.1542/peds.2023-064557.

Implications for research and practice

  • Having access to advance care planning, despite social and financial constraints is imperative. It is evident that in the population included in this study, advance care planning was invaluable for those below the 2021 financial poverty line.

  • Further research is required to determine if the current medical model in the USA is meeting the requirements of caregivers and children with rare diseases.

    • Context

    Rare diseases in babies, children and young people (children) are often life-shortening, and children can require constant caregiving. Bösch et al1 report that 82% of children in tertiary hospitals in the USA have a rare disease. This study was designed to establish...

    Enhancing communication confidence and competence: using simulation-based education in perinatal palliative care

    Por: Tatterton · M. J. · Whaley · V.

    Commentary on: Chen HW, Cheng SF, Hsiung Y, et al. Training perinatal nurses in palliative communication by using scenario-based simulation: A quasi-experimental study. Nurse Educ Pract. 2024. 75:103885. doi: 10.1016/j.nepr.2024.103885

    Implications for practice and research

  • Scenario-based simulation (SBS) is an effective method of enhancing the confidence and competence of nurses supporting families who require perinatal palliative care.

  • Further research should focus on the durability of skills acquired through SBS as well as exploring the impact of SBS on a more diverse sample.

    • Context

    Communication is a cornerstone of nursing practice and fundamental to establishing and maintaining relationships with individuals and their families. Nurses involved in the provision of perinatal palliative care work with women, babies and their families, during pregnancy, delivery and in the neonatal period. Effective therapeutic relationships with women and families empower parents, providing control and validation,1 enabling positive...
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