PEDIATRICS Vol. 121 No. 2 February 2008, pp. 282-288 (doi:10.1542/peds.2006-3153)
ARTICLE |
Barriers to Palliative Care for Children: Perceptions of Pediatric Health Care Providers
a Department of Family Health Care Nursing, University of California, San Francisco, School of Nursing, San Francisco, California
b Department of Pediatrics, University of California, San Francisco, School of Medicine and University of California, San Francisco, Children's Hospital, San Francisco, California
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ABSTRACT |
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 TOP ABSTRACT METHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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OBJECTIVE. The goal was to explore barriers to palliative care experienced by pediatric health care providers caring for seriously ill children.
METHODS. This study explored pediatric provider perceptions of end-of-life care in an academic children's hospital, with the goal of describing perceived barriers to end-of-life care for children and their families. The report focuses on the responses of nurses (n = 117) and physicians (n = 81).
RESULTS. Approximately one half of the respondents reported 4 of 26 barriers listed in the study questionnaire as frequently or almost always occurring, that is, uncertain prognosis (55%), family not ready to acknowledge incurable condition (51%), language barriers (47%), and time constraints (47%). Approximately one third of respondents cited another 8 barriers frequently arising from problems with communication and from insufficient education in pain and palliative care. Fourteen barriers were perceived by >75% of staff members as occasionally or never interfering with pediatric end-of-life care. Comparisons between physicians and nurses and between ICU and non-ICU staff members revealed several significant differences between these groups.
CONCLUSIONS. Perceived barriers to pediatric end-of-life care differed from those impeding adult end-of-life care. The most-commonly perceived factors that interfered with optimal pediatric end-of-life care involved uncertainties in prognosis and discrepancies in treatment goals between staff members and family members, followed by barriers to communication. Improved staff education in communication skills and palliative care for children may help overcome some of these obstacles, but pediatric providers must realize that uncertainty may be unavoidable and inherent in the care of seriously ill children. An uncertain prognosis should be a signal to initiate, rather than to delay, palliative care.
Key Words: pediatric palliative care • pediatric end-of-life care • barriers • uncertain prognosis
Abbreviations: EOL—end of life • UCSF—University of California, San Francisco
Three fourths of pediatric deaths occur in hospitals each year, mostly in ICUs,1 where aggressive, life-sustaining, medical therapy typically is provided. In 2000, the American Academy of Pediatrics issued recommendations for an integrated palliative care model, beginning at diagnosis and emphasizing the provision of curative therapies and comfort measures to enhance the quality of life throughout the disease process.2 Pediatric palliative care services have expanded since those recommendations were promulgated; however, many dying children still do not receive palliative care and may suffer needlessly.1
Many barriers to providing optimal pediatric palliative care have been identified, including limited financial resources for specialized pediatric care, limited access to specialty care in rural areas,3 communication problems,4 false hope for cure, inappropriate continuation of use of advanced life-saving technology, ethical and legal issues, inappropriate eligibility criteria, fragmented care, inadequate assessment and management of symptoms, lack of research on pediatric palliative care, and lack of training and expertise.5 The literature indicates a general consensus on the dearth of trained health care providers in pediatric palliative care,6–8 even in pediatric oncology.9 Indeed, the Institute of Medicine report on dying children emphasized the lack of adequate data and scientific knowledge to deliver effective care, to educate caregivers, and to design supportive public policies.1 Few studies have addressed the perspectives of pediatric health care providers on caring for seriously ill children or on providing end-of-life (EOL) care for dying children. The purpose of this study was to describe barriers to EOL care for children and their families, as perceived by pediatric health care providers at an academic children's hospital in the western United States.
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METHODS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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Study Design
As part of a larger unpublished survey, this study used self-report questionnaires to examine staff members' perspectives about pediatric EOL care. The goal of the project was to assess the status of and perceptions about pediatric EOL care in the hospital, as a basis for developing a pediatric palliative care program. Data were collected during January, February, and March 2002. The survey was mailed via campus mail to all pediatric staff members at the University of California, San Francisco (UCSF), Children's Hospital; those who worked
50% of the time providing direct care to pediatric patients (age range: neonate to 21 years) were asked to respond. Most of the respondents were physicians or nurses. This report focuses on the responses of these 2 professional groups, referred to as staff in this report.
Procedures
The survey was developed from tools used in previous studies, an extensive review of the literature, and clinical experience. Content validity was established through comparisons with the palliative care literature, with input from nationally recognized and published experts in pediatric palliative care. A small group (n = 8) of nurses and physicians from palliative care programs in other tertiary care children's hospitals pilot-tested the survey. On the basis of their input, questions that seemed repetitive were deleted and the remaining questions were grouped in tabular format according to topic, to improve clarity. Most questions were structured as Likert-scale responses. Respondents were asked to indicate the frequency (never/seldom, occasionally, frequently, or almost always) with which identified potential barriers interfered with their providing optimal EOL care to children.
After the UCSF committee on human research approved the study, each staff member (n = 698) at UCSF Children's Hospital received a survey packet, which included a cover letter explaining the study's objectives and assuring confidentiality of responses. Surveys and return envelopes (both coded to protect anonymity) were distributed to staff members through campus mail. Three weeks later, nonrespondents were mailed a second survey. To protect confidentiality more completely, one team member recorded the code numbers of returned surveys and another opened the envelopes and entered data. Links between providers and code numbers were locked in a file cabinet that was accessible only to the study coordinator. Consent to participate was inferred from the receipt of a completed survey.
Statistical Analyses
Respondent characteristics are reported as means and SDs for quantitative variables and as proportions (and frequencies) for categorical data. Associations among quantitative variables are reported with Pearson correlations if the assumptions were met and with Spearman correlations otherwise. Group comparisons between nurse and physician respondents were tested with Pearson 
2 tests for categorical variables and with Mann-Whitney U tests for ordinal responses to questionnaire items regarding perceived barriers. Significance test results are reported with 
= .05 (2-tailed).
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RESULTS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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Sample Characteristics
A total of 240 providers responded to the 698 distributed surveys (response rate: 34%). Of those surveys, the 83% completed by nurses (n = 117) and physicians (n = 81) are described in this report; the remaining 42 returned surveys were completed by providers from other disciplines. The respondents' median age was 37 years (range: 22–70 years), and median values were similar for nurses and physicians (nurses: 38 years; physicians: 36 years). Most respondents (77%) were female (93% of nurses and 53% of physicians). The sample was predominantly white (75%). The median length of work experience was 7 to 9 years; 50% of respondents had worked
7 years in their profession. The largest proportions worked in ICUs (34% in NICUs and 11% in PICUs). A smaller proportion of nurses (10%) than physicians (64%) cared for patients in multiple units. Just more than one half (59%) of the sample responded that, in the previous year, they cared for 1 to 5 pediatric patients who died; approximately one third of the staff members cared for 6 children who died. Table 1 summarizes the demographic features, training, and practice characteristics of the sample of nurses and physicians.
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Provider Perceptions of Barriers
Approximately one half of the respondents reported 4 of the 26 barriers listed on the questionnaire as frequently or almost always occurring, that is, uncertain prognosis (54.6%), family not ready to acknowledge incurable condition (51.1%), language barriers (47.3%), and time constraints (47.1%). More than 30% of the sample reported another 8 barriers as frequently or almost always occurring, that is, family preferences for more life-sustaining treatment, compared with those of staff members (40.6%), staff shortages, cultural differences, lack of a palliative care consultation team, insufficient knowledge of EOL pain management, conflict among family members, conflict between staff members and family members about treatment goals, and insufficient knowledge of palliative care (31.0%). In contrast, all of the remaining 14 of 26 barriers were reported by >75% of staff members as occasionally or never interfering with optimal EOL care, ranging from parental discomfort with the possibility of hastening death (75.9%) to staff members' fear of addiction (92.0%) (Fig 1).
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Comparisons of Nurses and Physicians
Three statistically significant differences between nurses and physicians in perceived barriers to EOL care were noted. Physicians perceived cultural differences (P = .001, Mann-Whitney U test) and conflict among family and staff members about treatment goals (P = .04) as barriers more often than did nurses. Conversely, nurses more often than physicians noted that the unavailability of an ethics committee interfered with providing optimal EOL care (P = .002), although this barrier was not one of the most commonly identified. Nurses more often than physicians noted the lack of a palliative care consultation team as a barrier; however, this difference was not statistically significant (P = .06) (Table 2).
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ICU/Non-ICU Staff Member Comparisons
Significant differences also existed between staff members who worked in non-ICU acute care units and those who worked in ICUs. Non-ICU staff members reported the following barriers more frequently than did ICU staff members: time constraints (P = .000), staff shortages (P = .002), and parental discomfort withholding/withdrawing medical nutrition or hydration (P = .02) (Table 3).
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DISCUSSION |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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Barriers Identified
Of the 26 barriers listed in the questionnaire, only 12 were reported as frequently or almost always occurring by a substantial proportion of respondents (>30%). Surprisingly, many of these identified barriers differed from those reported to be of greatest concern to adult palliative care providers.10,11 In contrast to their salience in studies of adult palliative care, fears of addiction, of hastening death, or of legal action were identified by most of this study's respondents as never or only occasionally occurring. Differences in barriers between pediatric and adult palliative care underscore the need to investigate the unique circumstances involved in providing palliative care to children.
Several of the most frequently reported barriers (eg, time limitations, staff shortages, cultural differences, lack of a consultation team, insufficient knowledge of pain management and of palliative care, conflict among family members or between family members and staff members) seem to be constraints inherent in clinical practice in many settings in the United States. Limitations in funding and staffing are paramount barriers restricting the provision of palliative care to critically ill children. Our findings validate the specialized time, expertise, and resource requirements essential for providing care to children with life-threatening conditions as they near the EOL. Our results suggest a need for more-widespread education and mentorship in palliative care to address deficits in staff members' knowledge and experience (eg, educational preparation, comfort levels, and communication skills), as well as changes in how hospitals staff their units to provide the time required for the specialized palliative care needs of children.
Uncertain Prognosis
The most commonly perceived barrier was uncertain prognosis, a concept cited more frequently in pediatric literature than in adult literature.9,12,13 Children with life-limiting illnesses suffer from a diverse range of conditions, including congenital abnormalities, chromosomal disorders, neurodegenerative disorders, and malignancies,14 for which it is difficult to predict accurately overall prognosis or disease trajectory.15 This uncertainty impedes providers' ability to predict accurately treatment responses or overall chances for the child's survival. It also affects decision-making. In a study of pediatric patients with cancer, the certainty that a patient would not get better and discussions with the patient's family figured most prominently in health care providers' decision-making.16 Uncertainty may confuse the goals of care, resulting in dichotomous "cure versus palliative care" thinking, rather than encouraging the 2 types of therapies to coexist. Uncertainty in prognosis encourages parents' pursuit of curative treatments until the medical staff members are "sure" of the child's imminent demise, which may confine palliative care efforts to late in the course of disease. Uncertainty, if not dealt with openly, may undermine credibility and trust, may impede development of consensus among providers or between the health care team and parents, and may delay initiation of the psychosocial support and respite from suffering that a palliative approach could offer.
Family Not Ready to Acknowledge Incurable Condition
Given parents' hopes and dreams for their children, it is understandable that the second most frequently reported barrier was the family not being ready to acknowledge an incurable condition. The trajectory of many life-threatening pediatric conditions often involves unexpected reversals and idiosyncratic responses to therapy,13 as well as plateaus of relative stability.17 Parents' hopes for recovery, boosted by miraculous recoveries recounted in the media, entice them into believing that the seemingly "endless possibilities of medicine's technologic prowess"13 will save their child. Parents whose child has survived against the odds may be reluctant to acknowledge an inevitably fatal outcome and often pursue desperate attempts to postpone it.
Providers may recognize a prognosis as terminal sooner than parents18 and have the complex job of communicating the child's poor prognosis, adequately informing the parents, and dealing with their hopes and denial. Many parents report that they "just did not believe" the medical providers who tried to prepare them for their child's death, despite understanding the possibility on some intellectual level. Denial can be a powerful coping mechanism, allowing parents the emotional energy to support their child. The inability of providers to communicate clearly and sensitively about a child's poor prognosis, along with their reluctance to dash all hope, may compound these parental perceptions. Unfortunately, the time required for parents to recognize the incurable nature of their child's condition can act as a barrier to optimal EOL care. It can exacerbate tensions between family members and providers and precipitate acute moral distress in providers who view continued attempts at aggressive curative or life-prolonging therapies as increasing a child's suffering.19 The introduction of skilled communicators and a psychosocial support person into discussions can facilitate clearer communications between providers and parents, including greater agreement about the beginning of the EOL care period.18 Parents may still require more time than providers to assimilate the evidence that their child's condition is deteriorating. Understanding that a child will die from his or her underlying illness is most likely multifactorial. Research has validated the importance parents place on sensitive and caring communication, including frank discussions to prepare them for the dying process,20 along with providers' emotional expression of compassion and kindness.21 In addition to honest, compassionate, and repeated discussions with providers, parents may simply need to see changes in their child's behavior or appearance to believe that their child may be dying.18
Nurse/Physician Comparisons
Palliative care works best as an interdisciplinary effort. Nevertheless, few studies have investigated potential differences across disciplines. Our data show 3 contrasts between physicians and nurses that could suggest ways to improve delivery of palliative care to children.
First, culture was perceived differently by nurses and physicians, with physicians being more likely than nurses to perceive culture as a barrier. We speculate that this variation may arise from distinctions in nurse and physician roles, as well as in language and communication patterns. Physicians must be able to speak with parents about their child's diagnosis, prognosis, and treatment. Even when a skilled interpreter is used, a physician's ability to communicate effectively may be very limited when a family has difficulty communicating in English or when the family's understanding of the cause of disease conflicts with mainstream allopathic theory. This communication gap may cause a physician to report language or cultural differences as a salient barrier to optimal care. Nurses might be less disposed to do so. Nurses spend more interactive time at the bedside with patients and their families, which affords them more opportunities to communicate with families, assess their understanding, and clarify important information. Nursing care is more adept at offering comfort and teaching nonverbally, thereby reaching across cultural or language barriers inherent in verbal communication. Furthermore, nursing education emphasizes relational caring more than physician training does,22 which likely enhances nurses' understanding of the cultural context of care.
Second, physicians cited conflict about treatment goals as a barrier more frequently than did nurses. Previous research showed that generally physicians, in comparison with nurses, seem to think that the medical plan is more congruent with the family's wishes.23 When perceptions of prognosis or treatment goals differ between staff members and family members, physicians, who are responsible for presenting treatment options and shaping the goals of care, may be more likely to perceive this conflict as a barrier, feeling culpable for the inability to reconcile differing expectations.
Third, although the lack of an ethics committee was an uncommon barrier, nurses more than physicians cited this as affecting EOL care. This may be emblematic of a larger issue, namely, that nurses feel disconnected from decision-making. In a study of EOL care in a PICU, most physicians (92%) reported that ethical issues for patients had been discussed thoroughly with the care team, compared with only 59% of nurses.4 Burns et al4 concluded that nurses may feel disenfranchised when they cannot participate in decision-making or when they are dissatisfied with the support available to families making EOL decisions. Critical care nurses often experience conflicts between their personal and professional beliefs, parents' desires, and physicians' orders.24 Nurses spend considerably more time with families, gaining first-hand knowledge of the child's suffering and perhaps gaining a better understanding of the parents' beliefs. Ethics committees offer nurses a practical forum to discuss their concerns about incongruities between family preferences and the medical team's treatment plan. Unfortunately, the perceived lack of ethics consultation at our institution, where an ethics committee is available, suggests that these nurses did not feel they had a voice in seeking ethics consultations or arranging patient care conferences to discuss dilemmas in care.
ICU/Non-ICU Comparisons
Practice settings clearly influenced perceptions of barriers. Non-ICU staff members reported time constraints and staff shortages more frequently than did ICU staff members. In California, higher state-regulated nurse/patient ratios for critical care areas, compared with non-ICU areas, may partly explain differences in perceived barriers according to work setting.25 Nurses, as well as physicians, are responsible for managing larger patient loads in non-ICU areas. In such situations, where increased staffing often is not feasible and staff members are charged with caring for dying patients and their families, time constraints and staff shortages expectedly become more important barriers to optimal EOL care. Compared with ICU staff members, non-ICU staff members more often identified as a barrier parental discomfort at withholding or withdrawing medical nutrition or hydration. The nature of ICUs offers a possible explanation. ICU staff members deal regularly with critically ill children, whose poor prognoses may be more obvious to both parents and staff members. In addition, both parents and staff members in ICUs may have more experience with the burdens and limitations of life-sustaining treatment than do staff members in non-ICU settings, which increases the likelihood that non-ICU staff members would more frequently perceive parental discomfort as a barrier, compared with ICU staff members.
Overcoming the Barrier of an Uncertain Prognosis
Our findings indicate that providers perceive an uncertain prognosis as an important barrier to initiating palliative care for pediatric patients. Previous research documented that the early recognition of a poor prognosis by providers and parents, while still maintaining hope, results in optimal palliative care for children with cancer.18 However, given the absence of cultural norms that prepare us for childhood death, it can be difficult for providers to introduce palliative care into the therapeutic plan when a patient's prognosis is still unclear. A dichotomous model that focuses on choosing between cure and comfort is likely to frustrate both pediatric health care providers and families.26,27
The primary goal must be to integrate palliative and curative or life-prolonging care into a coherent whole. Coming to the realization that a child's death is inevitable is a process for both providers and family members, and it cannot be expected that they would arrive at this understanding at the same time. Providers need to exercise patience, helping parents reach this understanding at their own pace. When possible, clinicians should discuss palliative care with families in anticipation of critical illness, at the time of diagnosis28 and during subsequent prenatal care, outpatient visits, or hospital admissions. Repeated serious discussions of palliative care options are essential as the child's condition deteriorates, but the introduction of palliative care options earlier in the disease course may improve parents' ability to make later, more imminent, decisions. Laying the groundwork for difficult decisions early in the disease process allows family members more time to hear, to question, to reflect on, and to understand difficult choices they may be forced to address if their child's condition deteriorates. Professional education should focus on effective communication skills and the appropriate time to initiate such conversations.29
We think that clinicians need to realize that uncertainty is not something to be avoided but rather is an inherent dimension of care. An uncertain prognosis should serve as a signal to initiate palliative care, rather than to avoid it, even when it is not yet appropriate to begin EOL care. Health care providers must acknowledge uncertainties and allow families to "try on" the "what ifs" of a poor outcome, giving them time to absorb this distressing information and to prepare for their child's possible death. An uncertain prognosis can create opportunities for enhanced communication while families restructure their understanding and garner strength. Acknowledging uncertainties may help diminish barriers to introducing palliative care by promoting collaboration between family members and pediatric clinicians as they attempt to define outcomes more clearly and work to clarify treatment goals, while promoting comfort.
Limitations
These data have been important in the development of the UCSF Children's Hospital pediatric palliative care program, but they may not be generalizable because they represent data from a single, tertiary care institution. Moreover, the response rate was low, although not atypical for survey research,30 and respondents who completed the survey might have had different experiences and views about EOL care, compared with nonrespondents. In addition, some nonrespondents might not have cared recently for a child who died and therefore chose not to return the survey. Because the questionnaires were administered anonymously, it was not possible to determine whether the respondents differed significantly from nonrespondents. Future studies may require individual interviews to better understand providers' perceptions of their experiences with children who die. This study included participants who cared for children with a wide range of diagnoses and ages. Although it precludes the ability to make specific conclusions about any one diagnosis or age group of children, this diversity is characteristic of the pediatric palliative care population. The study did uncover interesting insights about barriers perceived by staff members according to discipline or location of care, something few other studies have delineated.4,20,23 To compare perceptions more fully, future studies might focus on the perceptions of physicians and nurses caring for the same child and family. Finally, the study was subject to the limitations of all studies that rely on self-report measures.
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CONCLUSIONS |
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TOPABSTRACTMETHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES |
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Barriers commonly faced by hospital-based physicians and nurses caring for children at the EOL differ from those cited for adult palliative care. The barrier most often reported by all pediatric providers in all settings was an uncertain prognosis. Health care providers should recognize an uncertain prognosis as an inherent part of pediatric palliative care. Medical and nursing schools should incorporate principles of palliative care and effective communication skills into their curricula. We must teach providers that palliative care and EOL issues for children can be addressed sensitively and supportively with family and staff members even early in the course of a life-threatening illness. Palliative care, with its focus on comfort and communication, has a central place in the care of all children with life-threatening conditions, including those who survive and those who eventually die. Such a change in the culture of medicine would be a major step forward in optimizing the care provided to seriously ill children and their families.
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ACKNOWLEDGMENTS |
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This study was conducted under the auspices, and with the support of the Initiative for Pediatric Palliative Care (IPPC), a collaboration of Education Development Center, the National Association of Children's Hospitals and Related Institutions, the New York Academy of Medicine, the Society of Pediatric Nurses and the Association of Medical School Pediatric Department Chairs.
This study was supported by grants from Mrs. Jeannik Littlefield, the Frank A. Campini Foundation, and the UCSF Stanford Center for Research & Innovation in Patient Care. We also thank the University of California San Francisco Children's Hospital, the Department of Pediatrics, and the Department of Family Health Care Nursing for their support.
Finally, the authors express their gratitude to the health care professionals who participated in the study and made this research possible.
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FOOTNOTES |
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Accepted Jul 16, 2007.
Address correspondence to Betty Davies, RN, PhD, FAAN, Department of Family Health Care Nursing, University of California, San Francisco, 2 Koret Way, San Francisco, CA 94143-0606. E-mail: betty.davies{at}nursing.ucsf.edu
The authors have indicated they have no financial relationships relevant to this article to disclose.
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