LISTEN (Learning about the essentIal elementS of end-of-life communicaTion in palliativE Nursing care)

The famous nurse and founder of the modern hospice movement, Cicely Saunders, once wrote: “You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die”. This quote encapsulates the cornerstone of transmural essential palliative nursing care for older people, namely communication to help shape the end-of-life in a way that allows older people to live their life and fulfill their own goals for as long as possible. This may include communication about care preferences and goals of care (e.g., palliative treatments, life wishes, place of death), psychosocial, spiritual and practical needs as well as hopes and fears regarding dying and death. The process of discussing and documenting these issues is officially referred to as advance care planning (ACP). ACP addresses individuals’ concerns across the physical, psychological, social, and spiritual domains. Although ACP is a key concept in palliative care, few older people currently admitted to (acute) healthcare centers have had ACP discussions. This may result in care that is not in line with a person’s end-of-life wishes. The COVID-19 pandemic highlights the importance of timely ACP and simultaneously shows the gaps in its current practice. Older people and their family may not be adequately prepared to make in-the-moment decisions about goals of care in case of acute illness. Early and ongoing end-of-life communication supports patients’ autonomy, their quality of life, shared decision-making, transmural collaboration, preparedness for the dying phase, dying with dignity and the families’ grieving process. Nurses have a central position within multidisciplinary care teams in all care settings, and they generally build close and continuous relationships with patients and their families. They fulfill a fundamental and continuous role in providing this holistic end-of-life care. Current research shows that nurses’ perceive a lack of end-of-life communication competences as one of the main causes for their limited ACP practice. Nurses and nurse students receive limited education and training in end-of-life communication. Although literature shows that this is a common and profound barrier, there is currently limited evidence on what elements are part of optimal end-of-life communication to support nurses in end-of-life communication with older people as part of ACP. We need to develop a fundamental understanding of these optimal elements to be able to develop future evidence based nursing interventions in end-of-life communication as part of ACP; interventions which can be incorporated in future nursing curricula. My proposal will target two overarching goals. The first goal is to unravel the fundamental elements of optimal end-of-life communication by nurses, as part of ACP for older people. This fundament knowledge will strengthen my research line in Transmural Essential Palliative Nursing Care for older people. The second goal is to establish a sustainable infrastructure for my research line in Transmural Essential Palliative Nursing Care for older people. My research line finds its basis in geriatric nursing, as previous studies suggest that early end-of-life communication is important since decisional capacity might change quicker over the years, especially in people with dementia. However the revenues of this proposal may benefit other target groups as well. Revenues of this proposal include: 1.A validated theoretical framework of optimal end-of-life communication in older people by nurses as part of ACP; 2.A theory based outline for nursing interventions on optimal end-of-life communication in older people as part of ACP based upon this framework; 3.A theory based outline how to integrate optimal end-of-life communication as part of ACP in future nursing curricula; 4.A strong infrastructure of my research line in Transmural Essential Palliative Nursing Care for older people by expanding nursing research capacity though creating dual career functions. The proposal fits perfectly in the national research agenda and focus of the program of ZonMw ‘Verpleging en Verzorging’. Palliative care with a particular focus on end-of-life communication is essential for good quality of life, care and dying. This project will be embedded in the Research School CAPHRI, Living Lab in Ageing & Long-Term care of Maastricht University with key partners like Gilde Intermediate Vocational Training Institute, Zuyd University of Applied Science and in (the Nursing Expertise Center of) Zuyderland, connecting practice, education and research. Creating research capacity and connecting all involved partners will strengthen the scientific basis of future essential palliative nursing care for older people on a regional and (inter)national level.