Background: In the last few decades, research and clinical care have attempted to identify and meet the palliative care needs, concerns and challenges of patients of all ages with neurologic disease, under the newly defined subspecialty of neuropalliative care. However, the role of nurses in care organization and provision, as well as nursing priorities with regards to the needs and concerns of patients and families, have not been well articulated. The purpose of this review is to outline priorities in neuropalliative care nursing and examine what questions have been investigated to date.
Methods: The integrative review approach was used to produce an analysis of existing nursing literature on neuropalliative care. As the broadest of research review methods, integrative review includes experimental and non-experimental research, as well as theoretical work, allowing us to engage with concepts and evidence from multiple perspectives.
Results and discussion: Six themes of concern for nursing care and research were identified: (1) managing a heavy symptom burden, (2) unmet care needs, (3) the need for care pathways and protocols, (4) caregiver burden, (5) poor recognition of the dying, and (6) the impact of communication and cognition changes. An analysis and critique of the literature yielded the following recommendations for clinical and research priorities: (1) a paradigm shift in how neurologic disorders is perceived and managed, (2) redefining the scope of neuropalliative care and services, (3) understanding and addressing the needs of family members and caregivers and including them in assessments, care planning and provision; (4) having the difficult conversations and asking the right questions.
Conclusions: Nurses and nursing studies pay attention to things that matter to patients and their families. As the health professionals who spend the most time with patients and families at the bedside and in the community, nurses are well placed to build strong relationships, recognize needs and concerns, and recommend strategies and interventions to enhance comfort and alleviate suffering. In neuropalliative care nursing, this relational engagement becomes critical since patients experience changes to their cognition and communication as a result of disease progression. To enhance patient agency during a vulnerable time, methodologies to include patients who think and communicate differently in clinical care and research are urgently needed. Tweetable abstract: Neuropalliative nursing researchers call for better prognostication, recognition of the dying process, including patients in care decisions.
Keywords: Advance Directives; Caregiver Burnout; Cognitive Disorders; Communication Disorders; Family Caregivers; Grief; Neuroscience Nursing; Nurse Patient Relationship; Palliative Care Nursing; Review Literature.
Copyright © 2021. Published by Elsevier Ltd.