Caring for Dying Children: Insights for Pediatric Nurses
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University of Technology, Jamaica**We aren't endorsed by this school
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BSN3 NURS3002
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Nursing
Date
Dec 12, 2024
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5
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86PEDIATRIC NURSING/March-April 2009/Vol. 35/No. 2Caring for DyingChildren: Assessing theNeeds of the PediatricPalliative Care NurseSumner (2006) used a chil-dren’s book to poignantlydescribe the life cycle ofnature:There are lots of livingthings in our world. Each onehas its special lifetime. Allaround us, everywhere, be-ginnings and endings aregoing on around us all thetime. So, no matter how longthey are, or how short, life-times are really all the same.They have beginnings andendings, and there is living inbetween (p. 909).When a child dies, this cycle seemsunnatural. Suddenly, human potentialis lost, and dreams quickly becomeshattered. Parents, siblings, and healthcare providers are left to grieve theloss of the child. This dilemma hasencouraged many nursing leaders toexplore methods of research and evi-dence-based practice to promote bet-ter outcomes for everyone involved inthe palliative process.Pediatric palliative care hasbecome a topic of increasing studyand discussion in the health carearena. In the past, most palliative careprograms have focused on the adultpopulation. Research has shown thatpediatric palliative care programs andeducation are needed (Contro,Larson, Scofield, Sourkes, & Cohen,2004). Further research shows thatout of 3,000 hospice programs in theUnited States, fewer than 10% provideend-of-life care to children, and evenfewer provide care for dying neonates(Romesburg, 2007).Health care professionals facenumerous obstacles and challengeswhile providing care to this uniquepopulation of clients and their fami-lies. Barnard, Hollingum, and Hartfiel(2006) suggest the care associatedwith terminal illness demands thequalities and skills that arise fromcompassion, reciprocity, professionalcommitment, and the ability to com-municate with patients and their fami-lies. Professionals who witness thepain and suffering of children and theirfamilies may also experience pain andsuffering themselves. Without com-prehensive pediatric palliative careprograms, nurses may lack the edu-cation and training needed to meet thechallenges of this special care. Healthcare workers may experience emo-tions such as helplessness, anger,sadness, and anxiety while providingcare to dying children. These feelingsmay quickly lead to nurse burnout andincrease turnover rates in the hospitalsetting (Weigel, Parker, Fanning,Reyna, & Gasberra, 2007). History of Palliative CareThe concept of palliative care orig-inally evolved from the hospice philos-ophy of meeting gaps in care for seri-ously ill and dying patients. The Latinword palliatemeans “conceal or alle-viate symptoms without curing”(Romesburg, 2007). The earliestrecording of the word palliatecan betraced to the late 14th century, whereit originated in Elizabethan and Indo-European traditions (Morris, 1998). In1967, Dame Cicely Saunders foundedthe first modern hospice program inthe United Kingdom, which empha-sized the importance of compassionand medical science (Georges,Grypdonck, & Dierckx de Casterle,2002). Florence Wald, Dean of YaleUniversity, invited Saunders to theU.S. to learn about her experiences,and in 1974, she founded the firsthome hospice program based in NewHaven, Connecticut. In 1975, St.Luke’s Hospice in New York was thefirst hospice in the U.S. incorporatedinto an existing medical center. In1982, the first children’s hospice cen-ter opened in England (Foster, 2007).Despite growth in hospice initiatives,researchers have only just begun toexplore the unique aspects of pedi-atric palliative carePalliative care was first introducedin 1990 by the World HealthOrganization (WHO) (2004) and iscurrently defined as “an approach toObjectives and the CNE posttest can be found on pages 91-92.ContinuingNursingEducationSeriesPediatric palliative nursing care, both stressful and rewarding, requires coping skills, confidence, and otherattributes for successful patient care and nursing practice. Through a thorough literature review, clinicalworkshops, direct observations in pediatric palliative care settings, and personal nursing experience in theneonatal intensive care, pediatric intensive care, and oncology wards, this author confirmed the necessityfor studies to clarify the needs of dying pediatric patients and their families, as well as the needs of nurs-es who provide their care. This article briefly reviews the history and current status of pediatric palliativecare, describes the experiences of nurses caring for dying children, explores the impact of providing pallia-tive care on the hospital staff, and seeks to discover possible interventions by the advanced practice nurseto influence more positive patient care and nursing staff job satisfaction and retention.Darla MorganDarla Morgan, BSN, RN, is a Family NursePractitioner, East Tennessee Children’sHospital, Knoxville, TN.Acknowledgment: The author would like tothank Lauren Clevenger, PNP, for her assis-tance in developing this article.Statement of Disclosure: The authorreported no actual or potential conflict ofinterest in relation to this continuing nursingeducation article.
PEDIATRIC NURSING/March-April 2009/Vol. 35/No. 287care which improves quality of life ofpatients and their families facing life-threatening illness through prevention,assessment, and treatment of painand other physical, psychological, andspiritual problems.” WHO (2004) fur-ther describes palliative care for chil-dren as the active total care of thechild’s body, mind, and spirit, as wellas a means of providing support to thefamily.To provide this type of palliativecare today, hospitals throughout theU.S. have increased initiatives to meetthe unique needs of both adults andchildren. Although there are somecommonalities, pediatric palliativecare differs from adult palliative carein several ways that preclude theextension of existing adult servicesinto the pediatric world (Sumner,2003). Pediatric Palliative CareEach year in the U.S., 55,000 chil-dren less than 20 years of age die, andmany of these children experience alengthy illness (Carter et al., 2004).Common diagnoses affecting thelength of children’s lives include pre-maturity, congenital anomalies, sud-den unexpected infant death syn-drome (SIDS), chromosomal defects,trauma, neurodegenerative disorders,acquired immunodeficiency syn-drome (AIDS), and cancer. Cancerremains the leading cause of disease-related death in children and adoles-cents. It is estimated that 25% to 33%of children with cancer die; the aver-age number of cancer deaths in chil-dren is 2,200 per year in the U.S.(Himelstein, Hilden, Boldt, &Weisman, 2004). However, even withthese statistics, children’s palliativecare programs are not as prevalent asadult programs.A possible reason for lack of pedi-atric palliative care programs may bethat most people are just unaware ofthe need or just do not want to acceptthat children die. Children, the hopeand the future of our society, are notsupposed to die. The concept of achild dying before a parent is just toounbearable to imagine. There is some-thing especially tragic about a life withunrealized potential coming to an end.Thus, family members, as well ashealth care workers, often deny theapproaching death. The death andavoidance of its surrounding issuesmay also be reinforced by the uncer-tainty of the treatment outcomes inthe pediatric population (Rushton,2000).A unique aspect of pediatric pallia-tive care is the need to tailor all careand funded by a grant from the OpenSociety’s Project on Death in America.This group issued a statement thatsupported palliative and end-of-life(EOL) care across the lifespan(Bowden, 2002). The neonatal end-of-life palliative care protocol estab-lished a plan to create a protocoldelineating the needs of patients, fam-ilies, and staff necessary to provide apain-free, dignified, and family/staff-supported death for newborns (Catlin& Carter, 2002). The National Alliancefor Children with Life-ThreateningConditions brought together changeagents and leaders in the field of pedi-atric hospice and palliative care(Sumner, 2003). This group is expect-ed to evaluate current pediatric pallia-tive care programs, identify problems,and work toward continuous programimprovement.Current Issues for the PalliativeCare NurseAlthough much needs to be doneto provide optimal palliative care pro-grams for the patient and family, nurs-es caring for dying children also havemany unmet needs that have animpact on the care they provide, theirjob satisfaction, and ultimately, hospi-tal staff retention. A study conductedby Papadatou (1997) described theemotional distress experienced bynurses when a child dies:Health care professionalsare now, more than ever,directly confronted andaffected by childhood death,since an increased number ofchildren die in the hospital,usually after extensive effortsand heroic measures areundertaken to save theirlives. As a result, it is notuncommon for health careworkers to perceive the deathof a child as a “triple” failure:first, because they did nothave the means, skills, orabilities to a save a life; sec-ond, because in their socialrole as adults, they wereunable to protect the childfrom harm; and, third,because they “betrayed” par-ents who trusted them withthe most valuable being intheir life (p. 576).Inevitably, this sense of failureincreases grief reactions and intensi-fies feelings of helplessness, guilt,anger, and sadness. Providing care todying children can increase the nurs-es’ awareness of their own losses andvulnerabilities, thereby increasinganxiety and stress levels. around the developmental level orstage of each individual child. Anexample of this can be seen in the eth-ical and legal issues that arise in car-ing for a terminally ill teenager who,because of his chronological age,lacks the authority to make medicaldecisions, yet consensus supportsgiving him decisional authoritybecause of his cognitive and emotion-al maturity (Freyer, 2004). Discussionof and advocacy for his life choiceswill look different from those offered toan adult, as well as those offered to asmall child. Developmental level mustbe considered in pursuing effectivecommunication with the younger childas well. The delivery of support andcare must be age-appropriate andmust be re-evaluated as childrenchange through each developmentalstage.Another significant aspect of pedi-atric palliative care is the timing of itsinitiation. In adult palliative care, thepatient must be considered terminaland in the last six months of life toqualify for palliative or hospice careprograms. These requirements do notwork well in the pediatric setting, asmany of these children are still pursu-ing curative treatments at the time oftheir clinical deterioration and death.With the extended definition of pedi-atric palliative care to include care andsupport for life-threatening illness aswell as for those who are at the end oflife, pediatric palliative care shouldbegin at diagnosis if death is clearly apossibility.Support for pediatric palliativecare programs.Literature identifiesmultiple and diverse barriers to goodpalliative care, including attitudinal,clinical, educational, institutional, reg-ulatory, and financial barriers(Rushton & Catlin, 2002). However,significant change is on the way, asevidenced by the formation of nation-al and even international task forcesthat are attempting to develop policiesand protocols to address needs of chil-dren with life-threatening illnesses.The Children’s International Project onPalliative and Hospice Services(ChiPPs), which is composed of lead-ing international experts in the field ofpediatric palliative care, was estab-lished to promote research in pediatrichospice and palliative care (Davies,Brenner, Orloff, Sumner, & Worden,2002).The year 2000 marked the forma-tion of the nursing leadership acade-my in end-of-life care, which is com-posed of leaders from 22 nationalorganizations, and was created by theInstitute for Johns Hopkins NursingCaring for Dying Children: Assessing the Needs of the Pediatric Palliative Care Nurse
88PEDIATRIC NURSING/March-April 2009/Vol. 35/No. 2Moral and ethical distress. Moraland ethical distress can lead to feel-ings of helplessness and anger. Thisdistress occurs when nurses are askedto act in a manner that is contrary totheir beliefs. This disregard for person-al and professional values can under-mine the nurse’s integrity. Nursesstruggle with the dilemma betweentheir obligation to follow physicians’orders and their duty to provide acomfortable death (Davies et al.,1996). Barriers may occur whenhealth care providers are preventedfrom acting according to their person-al values and professional standards.These barriers may be external orinternal in nature. External barriersmay occur when a nurse’s opinion isneither sought nor valued in the work-place. Internal barriers may resultwhen a nurse has poor communica-tion skills or lacks the knowledge andskill to appropriately provide palliativecare. Resolution of these barriers mustbe achieved to maintain job satisfac-tion as well as appropriate patientcare.Literature suggests that when nurs-es feel they can no longer help the ter-minally ill recover, they begin to expe-rience a deep sense of sadness,ambivalence, and helplessness. Theydo not know how to cope with thedilemma of providing palliative andcurative care (Yam, Rossiter, &Cheung, 2001). Pain managementand case management issues aregood examples of this. The bedsidenurse who is with a child for a 12-hourshift is probably the best person toassess the effectiveness of the currentpain medication regimen and otherend-of-life needs. However, the nursemay report poor pain control or theneed for a patient care conference,and the request may not even be con-sidered. When nurse input is ignored,nurses may become angry, frustrated,and resentful about the care beingprovided to patients. Performingaggressive treatments is difficult whenthe child is actively dying. At times,children who should be in the pallia-tive phase of care are still receivingpainful, aggressive procedures, whichmay be performed with limitedassessment and suboptimal manage-ment of the patient’s pain. Theseaggressive measures take up precioustime needed by the family, siblings,and staff to prepare the child fordeath. Children, as well as adults,need time to finish tasks, say good-byes, and find closure. The author’sconversations with nurses in the clini-cal setting confirm that nurses agreethat children want to feel their livesassistance for families, and spiritualguidance. If these collaborators arenot present, then the nurse mustaddress the responsibility of meetingthese needs. The nurse may spend alarge portion of the shift trying to meetthese needs while reassuring andcomforting the patient and family. Aspatient advocate, the nurse often isasked to coordinate palliative careservices for the child.Burnout.Given the moral and ethi-cal distress, personal pain, and lack ofsupport experienced by pediatric pal-liative care nurses, it is not surprisingthat employee turnover rates wereaffected. In one large children’s hospi-tal, average length of employment fornurses was 2 to 3 years in the neona-tal intensive care unit (NICU), 3 to 7years in the pediatric intensive careunit (PICU), and 2 to 5 years in theoncology ward. In one facility, 12 newregistered nurse graduates were hiredthe previous year for the NICU, andonly 4 of the nurses were stillemployed in the NICU one year later.The reasons given for their leavingwere ethical dilemmas and burnout.The high levels of stress in these areascontribute to large staff turnover rates.One nurse indicated that the nursingsupervisor did not consider the level ofacuity for each patient when makingassignments. It is overwhelming tohave a patient who is actively dyingand have several other patients tocare for at the same time. The nursewas new to the unit and did not feelthat she was receiving adequate sup-port. She also thoughtfully consideredthe legal liability of malpractice withher perceived inability to adequatelycare for her other patients. Such apatient assignment will easily leavethe nurse feeling overwhelmed andhighly stressed. The nurse may feellike a failure to patients and cowork-ers. This lack of control and frustrationwill lead many nurses to seek lessstressful work environments. Lack of professional collaborationand education.Many articles in the lit-erature address the issue of limitedprofessional collaboration and appro-priate education for dealing with pedi-atric end-of-life care. Health profes-sionals are increasingly exposed tothe dying process and death with littleprior education to help deal with theparticular needs of the young patientand minimal preparation in recogniz-ing and handling their own personalreactions in the face of death. Controand colleagues (2004) addressed asurvey to hospital staff and parents toobtain their perspectives of pediatricpalliative care. The goal was tohave purpose and meaning, and arefaced with many challenges when try-ing to meet the holistic needs of dyingchildren.Personal pain.During the course ofthe author’s many clinical conversa-tions with nurses in pediatric palliativesettings, recurrent themes of personalpain evolved. Nurses reported feelingextreme sadness when dealing withdeaths of children. One nurse findsthat her sadness is compounded whenshe is providing care to a dying childthat is the same age as one of her ownchildren. Another nurse spoke aboutthe cold, dark stares of a mother afterlosing a child. The nurse reportedthere is nothing more disappointing ordevastating than watching the over-whelming grief on the face of a moth-er who has just lost a baby, especiallyif the parents had tried repeated fertil-ity treatments to have a child. An oncology nurse reported on hermost painful experience while takingcare of a dying child. She was takingcare of a 10 year-old girl one daywhen the child’s physician arrived withhis head down and everyone knew thenews was not going to be good. Thechild’s cancer was out of remissionand the child was told she was goingto die. The nurse recalled the little girlscreaming and repeatedly saying thatshe was not ready to die. The nursestood silently almost in shock from thenews and fear for the child. She didnot know what to say. She just heldthe child’s hand and silently said aprayer.These few poignant anecdotesselected from many clinical conversa-tions show that nurses suffer emotion-ally from the termination of estab-lished relationships with patients andfamilies. Nurses sometimes protec-tively keep themselves busy withphysical care and try to minimizeinteractions with families as much aspossible in an effort to avoid distress(Yam et al., 2001).Lack of support and collaboration.In addition to experiencing personalpain and ethical distress, nurses alsoreport feeling a lack of support frompeers, administrative personnel, andother health care team members. Thislack of support was a source of stressfor nurses with whom the author spenttime in palliative care clinical sites.Some hospitals employ supportivestaff, such as clinical nurse specialists,social workers, child life personnel,and chaplains. These collaboratorsprovide much needed services to fam-ilies. They explain procedures andprovide distractions for childrenundergoing painful treatments, meal
PEDIATRIC NURSING/March-April 2009/Vol. 35/No. 289Caring for Dying Children: Assessing the Needs of the Pediatric Palliative Care Nurseimprove services and address staffneeds. Some staff members reportedfeeling inexperienced in communicat-ing with patients and families aboutend-of-life issues, transition of patientsinto palliative or hospice care, “do notresuscitate” status, and pain manage-ment issues. The study indicated thatstaff were insufficiently trained andincompetent in symptom manage-ment and communication skills. Thismay exacerbate staff member stressand affect quality of care. Althoughinexperienced nurses may look tophysicians for guidance in end-of-lifecare, a study reported that 43% ofattending physicians and 56% of resi-dents also felt inexperienced in man-aging end-of-life symptoms (Contro etal., 2004). Nurses in some clinical settingsreported having inadequate knowl-edge, expertise, and skills to comfortgrieving parents. They felt uncomfort-able when parents cried, and most didnot know to handle the situation(information obtained from theauthor’s group study sites, January2008). Some nurses feared sayingsomething that would be inappropri-ate and offensive to parents (Yam etal., 2001). Clearly, this perceived lackof skill must be addressed if the dyingpatient and family are to receiveappropriate care.Role of the Advanced PracticeNurseIn an effort to reduce pressuresrelated to clinical activity and highpatient acuity, as well as to increasestaff education, the role of theadvanced practice nurse (APN) hasbeen operationalized in many clinicalsettings (Chang, Kicis, & Sangha,2007). Advanced practice nursingextends the traditional scope of nurs-ing knowledge and contributes to thedevelopment of the profession. Aninherent function of the APN is that ofa change agent, involving collabora-tion and consultation with other healthcare providers. The APN can providethis service through constant educa-tion, research, personal development,and organizational leadership (Bryant-Lukosius, DiCenso, Browne, & Pinelli,2004). APNs can serve as knowledgeableadvocates for patients and nurses in apalliative care setting. APNs can serveas frontline nurses to carefully coordi-nate care and implement new strate-gies to provide services to patients aswell as nurses. APNs can assist staffnurses with complex patient care pro-cedures, provide hands-on educationat the bedside, and support staff inFinally, APNs can be used as advo-cates for better staffing of nurses andother disciplines to meet the demandson evenings, weekends, and holidays.Through careful observations of careand conversations with staff, APNscan identify areas that are negativelyaffected by low staffing. APNs canwork through administration toincrease staffing to meet these needsand better serve clients. APNs canalso make definite improvements inthe care of dying children by imple-menting research to provide nurseswith evidence-based practice strate-gies. This knowledge will enable nurs-es, to meet the unique needs of chil-dren and help staff provide moreholistic care. Areas for Future ResearchThere is much to be done by nurs-ing professionals to secure the futureof pediatric palliative care programs.Many barriers exist that must be over-come to further research that will pro-vide evidence-based practices gearedtoward the specific needs of children.The first task is to increase awarenessof pediatric palliative care programsand the special needs of nurses whocare for dying children. Furtherresearch studies are needed to explorestrategies to decrease work-relatedstress in nurses caring for dying chil-dren. Another beneficial study couldinvolve clearly identifying the role ofthe APN in pediatric palliative careprograms and establishing protocolsfor staff development. These studiesmay also discover other innovativeways to increase satisfaction ofpatients, family members, and nursesoverall.ConclusionsA child’s death may seem like along, scary pathway. Nurses have thepower to create a brighter journey forthese patients and families, as well asfor themselves. The provision of pedi-atric palliative care can be both stress-ful and rewarding. By acknowledgingthe work of past historians, APNs canacquire a strong foundation to buildfuture evidence-based programs. Theuse of these programs will hopefullyinfluence positive patient outcomesand nursing staff job satisfaction.ReferencesBarnard, A., Hollingum, C., & Hartfiel, B.(2006). Going on a journey: Under-standing palliative care nursing.Inter-national Journal of Palliative Nursing,12(1), 6-12.managing challenging situations(Chang et al., 2007). It is essential forAPNs to work collaboratively withnurse managers to have ideas accept-ed and enhance the professionaldevelopment of staff (Hürlimann,Hofer, & Hirter, 2001). Perhaps themost important role of the APN is toserve as a mentor to novice nurses.This role may help to increase thecomfort level of the novice nurse,which will increase job satisfactionand decrease chances of burnout. There are many ways APNs canhelp make the workplace functionmore efficiently for staff and patients.APNs can coordinate support groupsfor nurses working in pediatric pallia-tive care setting. Research has shownthat employees may benefit from briefinterventions, called debriefing, whenexposed to traumatic events (Hanna &Romana, 2007). APNs can bringtogether staff members to identifyareas of stress, teach coping mecha-nisms, and identify staff members whomay need additional individual coun-seling. These activities will help allevi-ate the grief, anger, and feelings ofhelplessness that nurses experienceduring periods of stress.APNs can organize monthly inser-vices to help staff stay current onresearch and evidence-based practicerelated to pediatric palliative care.These meetings could involve guestspeakers from other professional dis-ciplines. Proper communication andcollaboration with professional disci-plines can help with the implementa-tion of care. Patient care conferences could alsobe implemented during these meet-ings. These conferences help educatecaregivers on each patient’s currentstatus and assist with continuity ofcare. The use of new educational pro-grams related to death and dyingcould be very beneficial. These pro-grams should be specifically designedfor each developmental age. Forexample, the developmental needs ofdying neonates would require nursesto possess a different knowledge baseand set of skills than for young chil-dren or teenagers. Such programmingwould help nurses achieve bettercommunication skills with patients.APNs can help develop policiesthat provide guidance for issues, suchas pain management. APNs can per-form audits on pain assessmentrecords in patient charts, which canhelp APNs monitor trends in pain lev-els and management. APNs candetermine if pain management isbeing adequately maintained andcoordinate referral services if indicated.
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