Jobi Mol. J
Lecturer, TMM College of Nursing, Kaviyoor, Kerala, India.
*Corresponding Author E-mail: jobimol2016@gmail.com
ABSTRACT:
In this narrative description, a novice nurse discusses her early days of practice as a neuropalliative nurse. She discusses the initial experiences she had as she delved into the new area of practice. She also explains how she initiated building a plan of care with a multidisciplinary team by reflecting on patient experiences. She describes the insightful moments where she recognized the patient and family education as a core component in neuropalliative nursing practice. Through reflective practice and building on her skills of communication she learns how to communicate with patients and families, especially in initiating difficult conversations. The narrative illustrates the importance of inter-professional practice. It is suggested that an up-skilling and re-orientation can be helpful for nurses who choose neuropalliative nursing as their area of practice.
KEYWORDS: Kid, Block
INTRODUCTION:
I started my career as a neuro-palliative care nurse at a tertiary care neuropsychiatric hospital in India. Neuropalliative nursing is the intersection between neuroscience nursing and palliative care nursing, where the focus is to alleviate suffering for patients and families with chronic neurological illnesses. Even though nursing care for chronic and progressive neurological diseases is being given in multiple settings and in varying degrees, I am the first designated nurse in the country working solely in the role of full-fledged neuropalliative nurse in a tertiary care setting.
Neuropalliative nursing is witnessing growth as a specialty and hence the path that a novice has to tread is quite unfamiliar. I write this to throw light on my early experiences as a neuropalliative nurse so that the readers can understand what a novice nurse may experience when diving into the specialty of neuropalliative care.
Soon after my post-graduation in nursing I joined a neuropalliative team providing specialized services for neurological and neurosurgical patients. Lest did I expect that what I am going to experience is going to profoundly influence me, my practice and my life.
The Initial Turbulence:
The field of neuropalliative care is relatively new and hence I had never heard about it before I could join the team. Palliative care is quite equated to end of life care and was seen closely linked to Oncology1. During the undergraduate program we learned about palliation under Oncology and hence I knew that Oncology is the specialty where palliative medicine is practiced widely.
In the very early days most of what I learnt was from observation and discussion with the team. The initial angst of the new job later turned into curiosity and multiple moments of discovery, insight and learning. I definitely needed extra reading as conditions like Amyotrophic lateral Sclerosis and Duchene’s muscular dystrophy are relatively rarer when compared to the common neurological and surgical diseases like acute stroke or traumatic brain injuries that we encounter in the inpatient areas during our training. I learnt on the job, as I observed the spectrum of cases that are been referred for palliative services. I felt that clearly there is a need for updating the knowledge in neuropalliative care as the spectrum of diseases and the approach to care varies much from what I knew. Even though the entire thing looked complex, working and learning with a multidisciplinary team made it easy. The need for multidisciplinary team in such a setting has been emphasized by practitioners3, but we lack the inter-professional training which can facilitate such teams.
Capture what the Patient Experiences, reflect on it and Build the Plan of Care:
The symptom burden in patients receiving neuropalliative services is huge. Understanding the challenges faced by patients, carers, their coping, family dynamics and so on came to me as I interacted with them. Every new day had to offer something new to learn, which helped me build a plan of care. The following is a vignette which describes how I re-discovered the importance of family education and communication as an integral part of nursing practice.
Mrs. Radha was a 64-year-old retired teacher and the mother of two young adults. She was socially active and was engaged in family roles actively before she incidentally developed symptoms and was later diagnosed to have Creutzfeldt-Jakob disease (CJD). After her diagnosis and acute management, she was shifted to home with her family. I made a home visit to Mrs. Radha’s house at mutually convenient time. Her daughter was feeding her as I entered her room. She was hardly interacting with Radha during the entire feeding. It all looked very mechanical. My interaction with the family revealed that they were highly burdened. They were unaware of what to expect in the course of illness. I understood that eventhough initially they were caring for Radha passionately, expecting her to improve over time, the downhill course of the illness and increasing functional disabilities made them lose hope. They had gone insensitive over time. I went near Radha held her arms, gave a smile and initiated some casual talk. Radha responded by a groan and gave me a smile. The family was surprised as they never thought their mother could respond to such stimuli. I realized that the caregivers have several unmet needs. Their need for support, education and most of all, information of what to expect when caring for patients with progressive neurological illnesses was very high.
Transition to Holism as a Paradigm of Care:
Even though the nursing training in our country incorporates palliative approach in the curriculum, with much attention to comprehensive care of chronically ill patients focusing on communication, empathy and family –centered care, neuropalliative nursing care seemed to be somewhat overwhelming initially. I felt that specialist training in palliative care could benefit a novice nurse to practice better in neuropalliative care setting. As described by Salins (2021), online courses in palliative care could be an efficient tool for novice nurses like me so that I can concurrently learn while practicing and this can help easy translation of learning into practice1.
The dominance of biological model of care in the common health care scenarios became clearer over time as palliative care practice progressed. Due to this even our patients and families are not much aware of what palliative care services got to offer them. When I started to assess non-physical symptoms and performed quantitative as well as qualitative assessments, I could understand that we are only addressing a tip of the ice berg. The fallacy of reducing the patient to mere disease and symptoms became even more obvious when I started following up them and had interactions over phone or in person.
Self-Reflection and Self-Care:
During the initial period of my adaptation, I often struggled with my own emotions. I found ways of rationalizing and gauged how comfortable or uncomfortable I am while discussing care of a terminally ill patient or witnessing ‘breaking of bad news’. Initially there were few instances when I had to take leave from the area. I had to take breaks, had a talk with my senior or teammate and then resumed. There is a need to train novice practitioners in maintaining healthy boundaries and ways of preventing counter-transference. As a young mother I can recollect several instances of such difficulties that I encountered when seeing pediatric patients. Reflective writing was a conscious effort to understand my experiences from a matter–of –fact point of view.
To sum it all up, Neuropalliative nursing is demanding as well as rewarding. Every nurse is a palliative care nurse and nursing has palliative care principles at its core. However, we need to re-orient our focus and shift our practice to be guided by principles of palliative care as often nurses may be under-trained to work in palliative settings2. Neuropalliative nursing is witnessing growth as a specialty and hence the path that a novice has to tread is quite unfamiliar. The need for training in inter-professional practice was another major area that was felt during this period. It can be clearly said that nurses are best placed for addressing the comprehensive needs for neuropalliative care. However we need to be up-skilled and our orientation needs to be sharpened for neuropalliative practice.
REFERENCES:
3. Sadhu S, Salins NS, Kamath A. Palliative Care Awareness among Indian Undergraduate Health Care Students: A Needs-Assessment Study to Determine Incorporation of Palliative Care Education in Undergraduate Medical, Nursing and Allied Health Education. Indian J Palliat Care. 2010 Sep; 16(3): 154-9. doi: 10.4103/0973-1075.73645. PMID: 21218005; PMCID: PMC3012238.
4. Warrier MG, Sadasivan A, Polavarapu K, Kumar VP, Mahajan NP, Reddy CPC, Vengalil S, Nashi S, Nalini A, Thomas PT. Lived Experience of Spouses of Persons with Motor Neuron Disease: Preliminary Findings through Interpretative Phenomenological Analysis. Indian J Palliat Care. 2020 Jan-Mar; 26(1): 60-65. doi: 10.4103/IJPC.IJPC_123_19. Epub 2020 Jan 28. PMID: 32132786; PMCID: PMC7017690.
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Received on 12.02.2026 Revised on 13.03.2026 Accepted on 04.04.2026 Published on 05.05.2026 Available online from May 09, 2026 A and V Pub J. of Nursing and Medical Res. 2026;5(2):93-95. DOI: 10.52711/jnmr.2026.19 ©A and V Publications All right reserved
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