Promoting patient comfort is a universal goal in healthcare. The concept of comfort is integral to the practice of pediatric palliative care.1,2 The presence or absence of comfort through symptom assessment is often measured; however, the positive traits that assist patients and families to cope with the experience of serious illness are rarely evaluated.3 We recently completed an evidence-based practice project investigating the feasibility of integrating palliative care early for children, adolescents, and young adults with cancer and other nonmalignant diseases undergoing hematopoietic stem cell transplantation (HSCT). The trajectory of HSCT may include a number of distressing physical symptoms as well as existential distress, but in general, these patients are not afforded timely access to palliative care services, which may assist in transcending the experience to live life as fully as possible.4 This project was based upon anecdotal feedback from nursing staff that patients and families experienced a myriad of stressors during the trajectory of HSCT, thus increasing discomfort for the family system and moral distress of the clinical nurses caring for these patients.
Although nurses’ feedback stimulated the conceptualization of the project and nursing served as the project’s champion, clinical nurses rated their satisfaction with the project lower than did all other clinicians including physicians, advanced practice nurses, or physician assistants. Comments by clinical nurses in real time were positive; however, their comments on the satisfaction survey indicated some degree of dissatisfaction secondary to a lack of feeling connected with the project and the desire for improved communication about exactly what interventions the palliative care team were providing for their patients. Nurses tend to cite the relationship with their patients and families as a hallmark of the art of nursing. This is particularly poignant in the world of pediatric oncology nursing, where clinical nurses may have known patients for several years or through multiple phases of the disease and its treatment.4 Often, by the time pediatric patients begin the HSCT journey, they have already established relationships with clinical nurses who aid in promoting their sense of comfort and well-being in optimizing their coping strategies.
Discordant satisfaction ratings may be due, in part, to less than optimal communication between the clinical nurses and members of the project team. As palliative care clinicians who are promoting early integration of palliative care, we must be mindful of the relationships that nursing and other healthcare professionals have with patients and families. Clinical nurses may perceive that their care efforts are insufficient to help a family through the stressors of HSCT or that the palliative care team is replacing or diminishing their close relationships with patients and/or families. Communication strategies used during the project included verbal communication with the HSCT team and the nurse navigator on a regular basis; however, individual clinical nurse contacts depended upon the needs of each individual patient. Our lesson learned is to include the clinical nurse for a short report on palliative care interventions after each patient encounter or to engage the nurse in actually providing the interventions. These findings illustrate that it is as important to assess the needs of clinical nurses as the needs of the patient and family.
Interventions aimed at demonstrating compassionate care are integral to nursing; improving communication skills of HSCT clinical nurses may be one way of improving satisfaction for nurses and for the families who receive this care. Nursing is a technical profession. Although desired, nurses are often unable to dedicate extended time for therapeutic listening. In our project, all families desired supportive care counseling; this included time taken by the palliative care team provider to listen to their fears and concerns. Supporting the time needed for clinical nurses to listen to patient and family concerns is essential for the early integration of palliative care. Attention must be paid to integrating nursing into the planning and implementation of the proposed practice change. Effective communication and interdisciplinary collaboration is the only way to develop standards of practice to revolutionize the care delivery model in pediatric palliative care and to advance the science of palliative care nursing.
1. American Academy of Pediatrics (AAP) Committee on Bioethics. Palliative care for children. Pediatrics. 2000; 106: 351–357.
2. Field MJ, Behrman RE. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academies Press; 2003.
3. Foster TL, Lafond DA, Reggio C, Hinds PS. Pediatric palliative care in childhood cancer nursing: from diagnosis to cure or end of life. Semin Oncol Nurs. 2010; 26 (4): 205–221.
4. Novack B, Kolcaba K, Steiner R, Dowd T. Measuring comfort in caregivers and patients during late end-of-life care. Am J Hosp Palliat Med. 2001; 18 (3): 170–180.