You are the nurse working on a medical surgical unit in a pediatric hospital. You have been taking care of a young patient for approximately one week. While providing your morning cares, the doctor walks in and delivers devastating news to the patient and the family. The child has been diagnosed with a life threatening illness. As the nurse, where do you go from here? What can you do to educate the parents on treatment options? The parents ask all sorts of questions and you don’t know where to start. It is necessary as a nurse to educate the parent or guardian so they understand options for an ill child and a great option being palliative care. In this paper I will discuss palliative care as an option for pediatric patients with a life threatening illness and what to expect when providing nursing care.
Palliative care is defined as care that helps the patient live out their final days as pain-free, comfortable and dignified as possible (Leming & Dickinson, 2016, p. 213). Understanding palliative care is the first important aspect when deciding what care is appropriate and should be discussed early when a life threatening illness is diagnosed. When palliative care is discussed early in the detection of disease by the interdisciplinary team, the child can be free of suffering and complications. Palliative care takes into account the patient’s and family’s wishes and builds a treatment plan to best suit the patient to have the best quality of life. These patients can gain relief from pain, symptom management, and communication and support from their family (Leming & Dickinson, 2016, p. 215). It is important to understand that palliative care starts when the life threatening illness is detected and continues whether or not the disease is being treated (Crozier & Hancock, 2012, p. 200). It can be implemented in a hospital setting, community setting or even in the child’s home and when the time comes, the pediatric palliative care team can assist the change from the hospital environment to a home environment with hospice services.
The first step in understanding palliative care is to understand who is involved in the interdisciplinary team. Not only are physicians and nursing involved but services such as child life, social work, pastoral care, and respiratory therapy are often included (Schmidt, 2011, p. 270). All of these team members come together and develop a treatment plan that is appropriate and individualized for each child. One last important team member that may not always be included would be the addition of a care coordinator. According to Schmidt’s research (2011), when including a team member such as a care coordinator, it was an easier and smoother process with identifying and arranging community services. By arranging these care coordination services this allows for the discharge process to be less difficult than without having a care coordination specialist.
Parents should be educated and understand what is offered with palliative care. Symptom management is one of the main goals of palliative care. Frequent assessments, appropriate management, interdisciplinary collaboration and communication with families are key concepts for symptom management (Crozier & Hancock, 2012, p. 200). Children with life threatening illnesses often experience symptoms such as pain, shortness of breath, GI upset and neurologic manifestations. These symptoms are dealt with and approached in the least invasive way possible. Pain management is often dealt with first. According to Crozier & Hancock, (2012) pain is one of the most commonly reported symptoms at the end of life and most patients fear the pain they will experience (p.200). Though the patient can experience multiple symptoms at once, a few similar drugs are used across each symptom. Opioid medication, such as morphine sulfate, along with anxiolytics and benzodiazepines are often the treatment for pain, dyspnea and neurological signs. There is an array of GI disturbances that the child can experience at the end of life and it is necessary to identify and treat the underlying cause (Crozier & Hancock, 2012, p. 201). The article by Crozier and Hancock (2012), reports that these symptoms can be distressing to the family. When educating the parents on what to expect, educate families through sensitive communication with facts and answer all questions presented to you.
Throughout the child’s time in palliative care, it is critical to have open communication with their parents or guardians. Due to the subjectivity of pain and symptom perception, there have been studies recorded about the misinterpretation of symptoms between parents and health care providers. Parents know their children best and as health care providers we need to listen to the perceptions of the pain or symptoms the parent is trying to express. The goal of the study provided by Vollenbroich et al., was to determine the success of the treatment provided by the health care providers based on the perceptions of symptoms by parents and health care providers. During the study, families were asked to rate their child’s quality of life on a 0-10 scale as well as list the four symptoms they thought their child suffered with most. A chart review was then performed to classify if the parent’s perception of symptoms was similar to what was reported by the health care professional. In a study by Vollenbroich et al. (2016), both the parents and the health care providers identified reoccurring symptoms, but what differed between the two was the perception of severity of symptoms (p. 16). The health care team often underestimated the severity when compared to the parents of the child. According to Vollenbroich (2016), in regards to improving satisfaction and quality of life, the role of communication between the parents and health care providers about distressing symptoms and what to expect in upcoming days was highly appreciated, but also a pivoting point when the perception of symptoms by the parents and health care providers was congruent (p.18). Careful listening to reporting from parents could help prevent suffering and improve satisfaction with care provided (Vallenbroich et al., 2016, p. 18).
It is important as a nurse by first assessing your attitude and beliefs of pediatric palliative care. By understanding your attitude toward palliative care, you can then provide care in a nurturing, supportive way to the patient in need. Nurses need to be at the forefront of these possibilities of care (Flexa Souza, Silva Correa Júnior, de Santana, & Nunes Carvalho, 2018, p 1409). As a nurse, you are experiencing the journey with the child and helping the family members through the grieving process. One role of the nurse in pediatric palliative care is the identify children who are appropriate for palliative care, advocate for that child to the physician and discuss provide resources for palliative care once deemed appropriate (Knapp et al., 2011, p.121).
Next, careful and frequent assessments are performed by the nurses to evaluate symptom control and to correct the course of treatment for the patient. Along with assessments it is essential to know each drug used, side effects of medication, and use of alternative non-pharmacologic therapies to educate the patient and family members. As a nurse when speaking to your patient and family, communicating and repetition of information is vital for the understanding of the disease process and treatment options. During a conversation with your patient and family listening, silence, remaining open and honest are key communication techniques to implement. Effectively using these techniques leads to the most important element in communication as a nurse, therapeutic communication.
Lastly as a nurse you should give the parents resources on parent support groups. Understanding that the parents just received devastating news leads you to address the needs of not only the patient but of the parents as well. This can be a stressful time for the whole family and having others there to support you can help them through this journey.
In conclusion, palliative care is an emerging