The role of palliative nursing care in spinal injury and disabilities

Ms. Mamta Parihar, Jodhpur

A jeweller can understand the true value of gold while a palliative care nurse can understand the true value of a person’s life!

Receiving the diagnosis of a life-threatening condition, most often leaves the patient and their family devastated. Palliative care is not only about relieving pain, reducing distressing symptoms and improving the quality of life of such patients, but it also helps support patients and their families to find peace amid all this chaos. Nurses play an integral part of the interdisciplinary palliative care teams as they are equipped with the skills and competencies to perform a wide variety of roles towards providing quality palliative and end-of-life care to patients from different healthcare settings. These nurses amalgamate evidence-based science, their interpersonal skills along with therapeutic use of themselves to provide optimum care for their patients.

Spinal injury is an injury to the spinal cord that results in temporary or permanent changes in the spinal cord’s normal motor, sensory, or autonomic function. People who sustain a spinal cord injury often have permanent and profound neurologic deficits and accompanying disabilities. This makes them vulnerable to several health conditions, especially obesity, skin infections, and systemic organs failure. One of the most prevalent needs of these patients is to return to a near-to-normal life in all aspects. Rehabilitation activities help patients to regain their health and confidence in their abilities. Successful reintegration into the society is facilitated by reducing the disabled person’s dependence on the medical system and redirecting them back to their families and support systems, and by addressing their vocational and social issues.

The care of patients with spinal injury depends upon the individual’s need and severity of the disease progression. Palliative care nurses should acknowledge and address these issues beginning with a patient’s in-depth assessment up until their complete evaluation. It is also important to remember that in palliative care nursing, attention must be directed towards understanding a patient’s unspoken or non-verbal communication, in addition to listening to their verbal communication.

The role of palliative care nursing for a patient with spinal injury and disability is accentuated in the below case scenario

Mr. Asif (name changed), a young 22-year-old adult, met us after a year of experiencing shooting pain in his back which got worse when he walked or stood up. It was then that he visited our hospital and got admitted to the neurosurgical ward in September this year. Post evaluation, he was diagnosed with an intradural extramedullary spinal tumor and was scheduled for surgery for his D11– L4 Laminectomy. Though Mr. Asif was stable post-surgery he was unable to walk or stand without assistance, and complained of pain at the operated site along with bowel and bladder incontinence. 

The sudden turn of events in Asif’s life had left him feeling miserable as he was a young adult who was now dependent on others for his activities of daily living (ADL) such as bathing, dressing, eating, eliminating, walking, etc. We nurses, noticed his distress and assisted him to take a bath, eat and get dressed, hoping that this would make him feel less dependent on his caregivers. We strived to provide comprehensive care to Asif by practicing the principles of palliative care and also tried to facilitate his active participation as much as his situation allowed him to do so. We sensitised and then taught his family about the need and importance of giving Asif regular massages and changing his position frequently to prevent bedsores. Additionally, our team of nurses explored various recreational options that would help Asif pursue his hobbies (eg. drawing, writing, singing, reading), as we were aware of improved recovery rates among those who responded to simulations.

One of the privileges of being a palliative care nurse is that we have several opportunities to engage in meaningful conversations with our patients and their families. It was during one such conversation with Asif, when we learned about his other concerns and that ‘the pain that was killing him wasn’t limited to only his physical pain, but it also included the distress caused due to the financial condition of this family’. We then spoke to Asif and his family, and introduced them to an occupational therapist who explained to them the availability of rehabilitative services to manage his physical pain. We also connected him to our social worker who in turn directed Asif and his family to an NGO who was willing to extend the necessary support.

The most common challenge faced by any palliative care nurse is when they are asked questions such as, “Sister, am I going to die?” or “Please! Tell me how much time do I have left now?”. In the case of Asif or for that matter in any other case which involves caring for a patient with a spinal injury or disability, the other common question we hear is, “Sister, Will I ever be cured?”. I am quite certain that any palliative care nurse who is providing care to such patients would have heard the above questions several times and have possibly felt helpless as we struggle to respond or manage such situations. In such circumstances, I strongly suggest that we must ‘stay’ with the patient and explore their problems and offer support as needed either personally or by directing them to the appropriate resource instead of ‘leaving them alone’ with some excuse or changing the subject of conversation. I also always advise my students as well to make the right decision to ‘stay’ and make a difference in the patient’s life.

The other considerable challenge that every palliative nurse encounters is the need to go beyond the traditional boundaries of nursing, and ensure that we are compassionate, quick, and non-judgmental decision-makers. This is more relevant to palliative care nurses as we usually find ourselves in the thick of collusion and face situations of dilemma when the patient wants to hide their diagnosis but the family wants to know about the same or vice versa. Despite having ethical legislations and guidelines to follow and adhere to, yet it becomes challenging as we are humans too and results in us experiencing moral distress and increased burn-outs.

You see, life is unpredictable and dependent on a host of factors. Absolutely no member of the health care team can predict for certain the future of a patient’s life. Nevertheless, the contribution of a palliative care nurse is ineffable as it is we who are and who will be by the patient’s bedside during their most difficult times. It is we who will hold the patient’s hands and help them to manage future care plans, provide psychological support and coordinate with the patient, families, communities, and the rest of the multidisciplinary health care team members. The role of a palliative care nurse therefore goes beyond just tending to a patient’s physical and psychosocial care, but towards also engaging in effective communication and facilitating teamwork and ensuring interpersonal harmony within the interdisciplinary teams and between the teams and the patient.  

About the Author: Ms. Mamta Parihar is a Faculty at the Dr. S.N. Government Nursing College, Jodhpur, Rajasthan, and a certified ELNEC Trainer (End of life nursing education consortium). Ms. Parihar is an RNRM and an MSc. qualified nurse who is also currently pursuing her PhD. from Geetanjali Medical College and University. Ms. Parihar is also a Life Time Member of the trained nurses association of India (TNAI) and the Indian Hospice and Palliative care Nurses Association (IHPNA).

Leave a comment