Alison Pirie, MSN, RN Purpose/Objectives: The purpose of this article was to highlight the lack of communication skills pediatric practitioners have when delivering bad news and introducing pediatric palliative care to a family with a child with a life-limiting condition. Fortunately, innovative tools and guidelines have been appearing in recent literature, and the clinical nurse specialist has an opportunity to implement these communication tools by utilizing her core competencies. Background/Rationale: Over 10 years ago, the American Academy of Pediatrics and the World Health Organization individually prepared definitions and mandates concerning the importance of pediatric palliative care. Approximately 450,000 children are currently living at home with chronic, life-limiting health conditions, many of whom are not receiving any palliative care services. Description of the Project: Literature about practitioner communication practices and resources was reviewed. Outcome: Advances are being made in pediatric palliative research, guidelines, and clinical tools. Interpretation: New advances are not being disseminated to the pediatric healthcare practitioner population, leaving practitioners with inadequate education and preparation for implementing pediatric palliative care. Implications: The clinical nurse specialist has the ability to cross through the spheres of influence by providing holistic care, implementing system changes, and by using a communication framework when working with palliative care patients and families. KEY WORDS: clinical nurse specialist, communication, pediatric palliative care A pproximately 53 000 children die in the United States each year, with more than half of thembeing younger than 1 year. Of these deaths, 16 000 are attributable to a chronic condition. Four hundred fifty thou- sand children live at home with chronic, life-threatening conditions. Many of these children are unable to attend school or participate in other age-appropriate activities. Approximately 5000 of the 53 000 children receive hospice services. These numbers illustrate the large number of children who are chronically ill who will not live to adult- hood but are not in the immediate end-of-life period. These children may be appropriate for palliative care services. Al- though there are no official criteria to define palliative care eligibility, guidelines and suggestions are available in the literature and from expert organizations. 1 This article presents the plight pediatric practitioners face when communicating to families with children with life-limiting conditions. For effective communication, spe- cialized communication tools and skills are necessary during all phases of the childs life, including the time of diagnosis, changes in the status of the condition, and during the childs end-of-life period. The clinical nurse specialist (CNS) is perfectly situated to take the lead in pediatric pal- liative care and communication with the childs family by applying the specialized communication tools and re- sources available. The CNS is also capable of developing new tools for future use. CNS Role in Pediatric Palliative Care Communication and Coordination The CNS has the potential to be a change agent and leader within pediatric palliative care. The CNS direct care com- petency definition describes care that fulfills the World Author Affiliation: School of Nursing/Johns Hopkins Hospital, Johns Hopkins University, Baltimore, Maryland. The author reports no conflicts of interest. Correspondence: Alison Pirie, MSN, RN, School of Nursing/Johns Hopkins Hospital, Johns Hopkins University, 1800 Orleans St, Baltimore, MD 21287 (amcneil6@jhmi.edu). DOI: 10.1097/NUR.0b013e31825aeb97 212 www.cns-journal.com July/August 2012 Clinical Nurse Specialist A Copyright B 2012 Wolters Kluwer Health | Lippincott Williams & Wilkins Feature Article Copyright 2012 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited. Health Organizations definition of pediatric palliative care. The World Health Organizations definition 2 of pe- diatric palliative care states that care is the active total care of the childs body, mind, and spirit and also in- volves giving support to the family. It begins when illness is diagnosed and continues regardless of whether or not a child receives treatment directed at the disease. In addi- tion, the World Health Organization 2 encourages a broad multidisciplinary approach to providing well-rounded care to children and their families with life-limiting illnesses, including using a holistic model to meet the physical, spir- itual, and psychological needs of the child and family. The National CNS Competency Taskforce 3 describes the CNS in the direct care competency using a holistic perspective when promoting health and improving quality of life. The CNS is expected to provide advanced management of health, illness, and disease states that require direct in- teractions between patients and families. 3 Because the CNS is able to bridge the gap between the 3 spheres of influence: patient, nursing practice, and system, he/she has the skills to identify the need for palliative care, de- velop interventions and services, and subsequently pro- vide the necessary coordination of care using the core competencies. Communication Between the Healthcare Practitioner and the Family Communication is considered the most commonly pro- vided procedure in medicine. It is required in order to come to an accurate diagnosis and establish a success- ful treatment plan. Communication is fundamental to holis- tic, family-centered care. Effective communication responds to the complex needs of the whole patient and family. Informativeness, interpersonal sensitivity, and partnership building are essential elements to parent-child-physician communication. 4 During a discussion involving members of the parent- child-healthcare practitioner team, the healthcare practi- tioner must include cognitive and affective communication in order to address patient communication needs. Cognitive communication serves the need to know and understand. Affective communication focuses on the emotional need to feel known and understood. Acknowledging individ- ual elements of communication, especially when delivering bad news, improves patient satisfaction with practitioner communication. 4 Bad news is any news that can alter how a patient sees his/her future, news that may disrupt a patients cur- rent lifestyle, or any information that is not welcome. 4,5 However, healthcare practitioners receive little education and practice in the delivery of bad news. 5 Communication skills are learned in practice through trial and error, which is in part attributable to the lack of qualified mentors to educate young healthcare practitioners on this topic. There is a current initiative in the preparation of pediatric healthcare practitioners to increase skill development in communication, particularly in the area of delivering bad news. 4 Patient dissatisfaction is common with bad-news com- munication because of the lack of skills and ineffective communication styles of nurses and physicians. 5 Parents interacting with healthcare practitioners cite dissatisfac- tion with the information provided if they feel disrespected or feel their fears are unacknowledged during these con- versations. In surveys, parents consistently express their desire to have as much information about their childs condition, its implications, and prognosis as possible. Par- ents want the information presented in a clear, jargon-free manner as soon as it is available. The practitioner must present information during these conversations with the understanding of the familys cognitive and affective com- munication needs. 4 Healthcare practitioners often perceive families as not being ready to hear about their childs potentially poor prognosis. 6 Although parents report having some cogni- tive understanding of the prognosis, they still have diffi- culty fully understanding the reality of their childs illness. 7 Because the family often requires additional time to accept and digest the affective communication, the need for pal- liative care is commonly realized by providers long before parents, which delays implementation. 7 The Committee on Bioethics and Committee on Hos- pital Care 8 recommend initiating palliative care discussions at diagnosis. Currently, this is not the common practice. Therefore, providers must first assess parent-readiness be- fore introducing the concept of palliative care. McCabe et al 9 found pediatric residents have limited end-of-life ex- periences and educational opportunities. No study par- ticipants agree with the statement feeling adequately trained when asked about their end-of-life responsibil- ities, including those involving parent communication. 9 Hendricks-Ferguson 6 explored parents perspectives of initial palliative care and end-of-life conversations and found that perspectives were individual and varied. She concluded that a communication model should be devel- oped that would incorporate a cognitive map to foster earlier discussions on palliative care and end-of-life care options for parents to consider during their childs ill- ness. 6(p528) Knowing how and when to initiate con- versations about palliative care is difficult to standardize because it is a very individualized concept. RESOURCES FOR THE PEDIATRIC PALLIATIVE CARE CNS Guidelines for Delivering Bad News Dr Chris Feudnter 10 identifies the delivery of bad news as the first task of pediatric palliative care and developed a model for healthcare practitioners. Several similar models Clinical Nurse Specialist A www.cns-journal.com 213 Copyright 2012 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited. and lists of guidelines exist to assist healthcare practi- tioners in the delivery of bad news. The 3 phases of de- livering bad news and the tasks included in each phase are listed in the Table. The third phase, planning, encompasses the second task of pediatric palliative care as described by Dr Feudnter. 10 The second task of pediatric palliative care includes rede- fining treatment goals and reframing the situation, as well as planning for future opportunities where the parents can ask questions and obtain information. Ending discus- sions with plans for future communication and follow-up reduces the likelihood that the family will feel abandoned and will increase their satisfaction with the bad-news communication. 10 As noted earlier, most practitioners have little experi- ence and education in delivering bad news. Dr Feudnters model for delivering bad news gives the practitioner direc- tion for bad-news communication, especially when an ex- perienced mentor is not available. This model addresses all of the factors parents cite as reasons for dissatisfactions following bad-news communication, including feelings of disrespect, and allows the practitioner to deliver clear, com- prehensive information on the patients condition. The CNS is in a position to coordinate conversations involving bad news, and therefore, the CNS is encouraged to use this model. This places the CNS in the position to be the fam- ilys consistent care coordinator from the first task of pedi- atric palliative care. A Communication Framework Whereas physicians are frequently tasked with initiating palliative care conversations with parents, it is often a nurse who spends the most time at the bedside, giving the nurse an accurate understanding of the childs suffer- ing andthefamilys understandingof theillness. 7 Collaborative care and communication between all members of the childs healthcare team may assist in creating earlier, more sympathetic conversations with a child and their family regarding palliative care and possible end-of-life decisions. The COMFORT Initiative describes 7 themes that serve as a framework for early palliative care communication and breaking bad news. 11 COMFORT stands for (1) com- munication, (2) orientation and opportunity, (3) mindful- ness, (4) family, (5) oversight, (6) reiterative and radically adaptive messages, and (7) team. These principles should guide the CNS in all discussions with families who have children with life-limiting diagnoses. The COMFORT Ini- tiative encourages narrative communication between the healthcare practitioner and the patient, not communica- tion at the patient. Its orientation into early palliative care interventions will allow the CNS to fully understand a fam- ilys needs and concerns as well as help the CNS cope with unexpected conversation topics. 11 Although it is com- monly the physician who leads the delivery of bad news, but in ongoing conversations during direct patient care and care coordination, the CNS can use these principles to be equipped to handle the difficult questions that arise after the initial shock of the bad news. A Decision-Making Tool Seattle Childrens Hospital Pediatric Advanced Care Team developed a decision-making tool (DMT) to be used by families with children with serious health conditions. The goal of this tool is to allow the family to openly discuss treatment goals with each other and with the medical team. The DMT is a living document that is modified as the patients needs and preferences evolve. The introduc- tion of the DMT uses nonthreatening language to explain its purpose and why it is being introduced to the patient and family. For example: It can be used when your child is diagnosed with a new condition, when you have deci- sions to make about treatment options, planning for dis- charge, or how to approach your childs care in the future. Explaining its purpose with these phrases allows the fam- ily to feel supported, rather than abandoned, during an emotionally labile time. The tool requests the family and interdisciplinary healthcare team complete information about the patients medical diagnosis along with the benefits and burdens of the treatments to this diagnosis. Information is also elicited about quality-of-life values, patient prefer- ences for involvement in goal and decision making, and other contextual issues such as cultural preferences and environmental factors. This tool walks not only the family Table. Three Phases of Delivering Bad News 10 Phase Practitioner Tasks Preparation 1. Rehearse what to say 2. Decide location of conversation 3. Investigate familys cultural beliefs 4. Visualize howthe delivery of bad news will unfold Delivery 1. Summarize patients clinical course and current status 2. Prepare family for undesirable information with a warning shot 3. Factually state bad news 4. Allow a therapeutic silence to show respect and empathy for familys situation 5. Healthcare provider follow-up with statement acknowledging his/her own emotion or state acknowledging emotions he/she observes 6. Answer questions from family Plans 1. Redefine treatment goals 2. Reframe situation 3. Create plan for future communications with the family 214 www.cns-journal.com July/August 2012 Feature Article Copyright 2012 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited. through decision making and goal development, but the healthcare practitioner as well. The Seattle Childrens Hos- pital is fortunate enough to have a functioning pediatric pal- liative care team, but any practitioner would be able to read the directions provided on the DMT and walk through each stepwith a family. By removing the wordpalliative fromthis functional tool, it reduces the intimidation as well as the in- ternal decisional conflict healthcare practitioners face when considering the appropriate time to introduce palliative care to a family. 12 The Initiative for Pediatric Palliative Care The Initiative for Pediatric Palliative Care was originated to address quality improvement, research, and education focused on enhancing family-centered care for children with life-limiting health conditions. 13 The Initiative for Pediatric Palliative Care has developed a curriculum with 5 modules that prepare any member of an interdisciplin- ary healthcare team to provide pediatric palliative care services to their patients. The first module Engaging With Children and Families addresses the decisional con- flict that healthcare practitioners struggle with about how and when to introduce pediatric palliative care. This mod- ule aims to increase the healthcare practitioners ability to engage the patients and families in making healthcare decisions about treatment goals by assessing the familys values and providing honest communication about treat- ment goals. 13 Conclusion Pediatric palliative care for children with life-limiting con- ditions is rationalized throughout the literature as a vital part of pediatric care but remains sorely underutilized. Barriers to palliative care communication and coordina- tion are documented, including the main barriers of lack of practitioner education, experience, and known resources. Proficiency within the CNS core competencies allows the CNS to bridge the gaps between patient, nursing, and sys- tem spheres while increasing family satisfaction with com- munication and care coordination. As innovative clinical tools and guidelines are developed, and the literature ex- pands on this topic, the CNS has a responsibility to become the leader of future pediatric palliative care communication and coordination. References 1. Moody K, Siegel L, Scharbach K, et al. Pediatric palliative care. Prim Care Clin Off Pract. 2011;38:327Y361. 2. WHO Definition of Palliative Care. World Health Organization Web site. http://www.who.int/cancer/palliative/definition/en/. Accessed April 11, 2009. 3. Clinical Nurse Specialist Core Competencies: executive study. The National CNS Competency Taskforce Web site. http:// www.nursingcertification.org/pdf/Exec%20Summary%20-%20Core %20CNS%20Competencies.pdf. Accessed July 30, 2011. 4. Levetown M and the Committee on Bioethics. Communicating with children and families: from everyday interactions to skill in conveying distressing information. Pediatrics. 2008;121: 1441Y1460. 5. Price J, McNeilly P, Surgenor M. Breaking bad news to parents: the childrens nurses role. Int J Palliat Nurs. 2006;12:115Y120. 6. Hendricks-Ferguson V. Parental perspectives of initial end-of- life care communication. Int J Palliat Nurs. 2007;13:522Y531. 7. Davies B, Sehring S, Partridge J, et al. Barriers to palliative care for children: perceptions of pediatric health care providers. Pe- diatrics. 2008;121:282Y288. 8. Committee on Bioethics and Committee on Hospital Care. Pal- liative care for children. Pediatrics. 2000;106:351Y357. 9. McCabe M, Hunt E, Serwint J. Pediatric residents clinical and education experiences with end-of-life care. Pediatrics. 2008;121: 731Y737. 10. Feudnter C. Collaborative communication in pediatric pallia- tive care: a foundation for problem-solving and decision-making. Pediatr Clin North Am. 2006;54:583Y607. 11. Wittenberg-Lyles E, Goldsmith J, Ragan S. The COMFORT in- itiative: palliative nursing and the centrality of communicationI communication, orientation and opportunity, mindfulness, family, oversight, reiterative and radically adaptive messages, and team. J Hosp Palliat Nurs. 2010;12:282Y294. 12. Pediatric Advanced Care Team. Seattle Childrens Hospital Web site. http://www.seattlechildrens.org/clinics-programs/palliative- care-consultation/. Accessed July 20, 2011. 13. IPPC Curriculum. Initiative for Pediatric Palliative Care Web site. http://www.ippcweb.org/curriculum.asp. Accessed July 20, 2011. Clinical Nurse Specialist A www.cns-journal.com 215 Copyright 2012 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.