Nursing Research and Health Policy Through the Lens of Pediatric Palliative, Hospice, and End-of-Life Care

Kim Mooney-Doyle, Lisa C. Lindley, and Pamela S. Hinds

Tragically, 28,000 infants and nearly 25,000 children between the ages of 1 and 19 years die each year in America (Field & Behrman, 2003; www.cdc.gov/nchs/fastats/adolescent-health.htm). Their dying and death can place their family members at high health risk. Parents are significantly more likely to experience depression and anxiety, experience a first psychiatric hospitalization, be unable to meet the emotional or developmental needs of their surviving children, have low levels of social functioning, experience high rates of accidents, leave the workforce because of health-related issues, and die earlier than parents who do not experience the death of a child (Boyden, Kavanaugh, Issel, Eldeirawi, & Meert, 2014; Goodenough, Drew, Higgins, & Trethewie, 2004; Harper, O’Connor, & O’Carroll, 2014; Hendrickson, 2009; Hinds, Schum, Baker, & Wolfe, 2006; Kreicbergs, Valdimarsdóttir, Onelöv, Henter, & Steineck, 2004; Kreicbergs, Valdimarsdóttir, Steineck, & Henter, 2004; Lannen, Wolfe, Prigerson, Onelöv, & Kreicbergs, 2008; Li, Laursen, Precht, Olsen, & Mortensen, 2005; Li, Precht, Mortensen, & Olsen, 2003; McCarthy et al., 2010; Rosenberg, Baker, Sryjala, & Wolfe, 2012; Valdimarsdóttir et al., 2007). This research also describes how the child’s death can threaten the health and functional status of parents and families—an impact that can continue for generations of a family and a community. Because of this, pediatric palliative and end-of-life care is a pressing public health issue. In particular, such care is urgently needed to prevent or reduce the negative effects on the health of family members—thus a primary prevention focus—even as a child is dying and after a child family member dies.

This chapter addresses the interface of nursing science and policy in pediatric palliative and end-of-life research and care. The levels of policy to be addressed include local institution, state, professional association, and national initiatives. Exemplar policies and programs exist at the level of nations, but we limit our focus here to the United States because context (including political, social, and financial) uniquely shapes the interface of nursing science and policy.

CONTENT CONCEPTUAL FRAMEWORK

The content conceptual framework created for this chapter has two sources: the five recommendations from the 2014 Institute of Medicine (IOM) report, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, and the three pillars of public health policy advocated by the Institute for Healthcare Improvement (IHI): care quality, cost, and care access (Table 18.1). By combining these two sources, the very recently released, evidence-based recommendations from the IOM and the public health policy pillars from the IHI, we were able to identify the extent to which evidence exists in each pillar for each of the five IOM palliative and end-of-life recommendations and to interpret the extent of evidence contributed from nursing science. The combined framework also helped in discern-ing the actual and possible impact of nursing science on health policy related to pediatric palliative and end-of-life care in the United States, including the impact on preventing serious health consequences for families who have experienced the death of a child family member. A brief description of these two foundations of the conceptual framework follows.

RECOMMENDATIONS FROM THE 2014 INSTITUTE OF MEDICINE REPORT, DYING IN AMERICA

The IOM convened a group of palliative and end-of-life care experts to review all available evidence and develop recommendations that could contribute to improved care for persons of all ages with a serious illness who are likely approaching death. The first IOM recommendation was:

This recommendation addressed the need for readily available, seamless, patient-and family-focused palliative and end-of-life care at all times and to have that care delivered by competent professionals who have the requisite training and skill. An interdisciplinary health care team was specifically recommended to provide this level of care. Quite importantly, the care provided is to be fully consistent with the values and goals of those receiving the care, and care recipients are to have been well-informed about options and been able to express their care preferences.

TABLE 18.1     Evidence Matrix of Pediatric Palliative Care, Hospice, and End-of-Life Care Research Positioned With IOM Recommendations to IHI Triple Aim

The second IOM recommendation was:

These quality standards were viewed as so essential by the IOM working committee that they recommended payers tie reimbursements to the successful achievement of such standards and that professional associations embed quality standards into their credentialing processes. The recommendation also reflected that children be allowed, as desired, to have a voice in their care decision making and that their voice be sought over time and changing circumstances as preferences and values can change.

The third IOM recommendation was:

This recommendation more directly addressed the need for all clinicians, regardless of discipline or specialty, to be prepared to provide primary or basic palliative care. Quite preferably, this education would begin at the first level of training for professionals and would continue throughout careers. Just as educational institutions need to provide this kind of training, accrediting organizations should require this content in reviewed programs, and certifying bodies should require this knowledge in their criteria for competency in pediatric palliative and end-of-life care. Relatedly, the same expectations apply for the specialty level (expert) of pediatric palliative and end-of-life care across institutions, organizations, and professional associations. Of concern to the IOM committee members was the tradition of separate educational preparation for disciplines in terms of primary and specialty palliative and end-of-life care, the absence of curriculum content related to palliative and hospice care, and insufficient attention given to talking directly to children and others with advanced disease who cannot survive their illness.

The fourth recommendation was:

The recommendation specifically urged financial incentives for well-coordinated care across types of settings and clinicians and improved decision making about care, including advanced care planning, to minimize the use of unnecessary treatment interventions and care services. The language supporting the recommendation also urged the use of interoperable electronic health records such that the care recipient’s care preferences and advance care planning were readily available across time, settings, and clinicians.

The fifth and final IOM recommendation was:

The additional supportive language for this recommendation indicated the need for media forms (e.g., billboards, pamphlets, flyers, blogs) to effectively and appropriately reach groups regarding care options, decision making, the value of dialogue among involved individuals (including family, clinicians, and others) regarding preferences, values, and care goals related to serious illness and further, to purposefully undo false information regarding care and care systems connected to end of life.

THE IHI’S TRIPLE AIM FRAMEWORK

The second part of the conceptual framework is the three pillars of public health policy advocated by the IHI and referred to as the Triple Aim Framework; the three pillars are care quality, cost, and care access and all three are population-focused. These pillars were developed to focus national attention on improving the experience of patient care in the United States and improving the health of all its citizens at a reasonable cost (www.ihi.org/sites/search/pages/results.aspx?K=triple+aim+framework). This framework aligns well with assessing policy impact on population health, such as the impact of nursing science on public policy to prevent or minimize the harmful consequences that can occur to a family following the death of a child family member. Importantly, both the Triple Aim Framework and the IOM 2014 recommendations support the quest for high-quality, individualized care for the dying in America and at a reasonable cost. In summary, this content conceptual framework represents the current evidence contributed from the discipline of nursing that is now guiding pediatric palliative, hospice, and end-of-life care and facilitates the analysis of the impact of this evidence in terms of care quality, cost, and care access.

NURSING SCIENCE AND HEALTH POLICY IMPACT IN PEDIATRIC PALLIATIVE AND END-OF-LIFE CARE AND SCIENCE

The following sections describe the nursing research that has informed various levels of health policy in pediatric palliative and end-of-life research and care. For each of the IOM recommendations and across each IHI Triple Aim pillar, we highlight the contributions of nursing science and nurse researchers to understanding the quality, cost, and care access to high-quality pediatric palliative and end-of-life care.

IOM 1

Cost of Care

The IOM report recommends that government, health insurers, and care delivery programs cover the provision of comprehensive care for children nearing the end of life, but at what cost? The expense to the health care system for children with life-limiting conditions is staggering. These children are often in the top 10% of health care expenditures for government and private health insurers, with an average annual cost of $82,000 per child (Buescher, Whitmire, Brunssen, & Kluttz-Hile, 2006; Lindley & Lyon, 2013). To manage the high cost of care, several states have implemented palliative care programs through their Medicaid plans. In 2005, the United States Department of Health and Human Services assisted states in waiving hospice eligibility by supporting PPC policies in Florida, Massachusetts, Washington, Colorado, Illinois, and California (Bona et al., 2011; Knapp et al., 2008). Early evidence from non-nursing researchers in California, Massachusetts, and Florida is sparse. California’s palliative care policy resulted in a cost savings of $1,677 per child per month on average or an 11% reduction in spending monthly (Gans et al., 2012). The Massachusetts palliative care program had costs that ranged from $1,520 to $7,421 per child, while the Florida palliative care program had average annual predicted costs for infants and children of $149,071 per child per year for inpatient care and $2,784 per child per year for hospice care (Table 18.1; Bona et al., 2011; Knapp et al., 2009). Thus, state programs designed to reduce costs have shown moderate cost saving for children enrolled in palliative care programs.

At the federal level, passage of the “Concurrent Care for Children” provision of the Affordable Care Act (ACA 2302) allows children to receive hospice care along with curative treatments, which might influence cost of care (Lindley, 2011). Although researchers have engaged in state-level studies of costs, research on the federal level has been limited. One possible explanation is the timing of the “Concurrent Care for Children” provision. ACA 2302 was passed in 2010; however, by 2012 more than 30% of states had not implemented this requirement (Lindley, Edwards, & Bruce, 2014). Thus, data are only now becoming available to conduct these studies. Nurse researchers might benefit from partnering with health care economists to explore the cost-effectiveness and cost benefit of policies and programs aimed at improving costs for children at end of life. Collaborations with political scientists might encourage the use of alternative methods such as natural experiment designs to investigate the effect of policy changes on costs. Therefore, nursing research examining the cost implications of pediatric state and federal policies has the potential to expand and provide a significant contribution to our understanding of how policies can influence the cost of care for children at end of life.

Quality of Care

Although end-of-life care quality measures have emerged recently through the Hospice Item Set (Centers for Medicare and Medicaid Services, 2013), “Measuring What Matters” in palliative care (Dy et al., 2015), National Quality Forum Palliative and End-of-Life Quality Measures (National Quality Forum [NQF], 2016), and clinical practice guidelines for quality palliative care (National Consensus Project for Quality Palliative Care, 2013), there are limited standard quality measures for providing end-of-life care specifically for children and their families.

The Standards of Practice for Pediatric Palliative Care and Hospice issued by the National Hospice and Palliative Care Organization (NHPCO) is one of the few sources that includes quality measures for pediatric end-of-life care (NHPCO, 2009). As an example, end-of-life care should be patient- and family-centered. Nurse researchers have found that families and children are generally satisfied with the patient- and family-centered care delivered by pediatrics hospices and palliative care (Contro, Larson, Scofield, Sourkes, & Cohen, 2002; Davies et al., 2005; Gans et al., 2012). In addition, pediatric end-of-life care should be congruent with the individual and family preferences, values, and cultural beliefs. Emerging evidence suggests that pediatric hospices generally deliver culturally competent end-of-life care, with the majority of hospices providing translation services (74.9%) and interpreter services (87.1%) for children and families (Lindley et al., 2016). Finally, all aspects of care should be sensitive to the needs of the child and family. Gans et al. (2012), in a study of 33 families, found the California palliative care program improved family quality of life, as demonstrated by reports of less difficulty sleep-ing, less feelings of nervousness, tension, or worry about their child. The families also reported that care coordination, family education, massage therapy, child life therapy, and the 24/7 nurse line offered through the policy were helpful in reducing stress and worry at end of life. Thus, children and families may be receiving quality care at end of life.

Overall, the limited evidence suggests that providing quality end-of-life care for children and families is a critical component for the well-being of the child and family, but that the lack of standard quality measures specific to this population has limited the advancement of pediatric end-of-life science. Nurse researchers have a leadership opportunity to engage the pediatric end-of-life clinical and scholarly communities in identifying and developing quality measures specific to pediatrics. Creating measures that are meaningful for clinicians and appropriate for research will promote and enable the translation of findings to improve care for children and their families.

Access to Care

The IOM report also suggests that government, health insurers, and care delivery programs should provide access to care for children at the end of life. However, nursing studies have found that provision of end-of-life care for children is not common and the availability of pediatric providers is declining. In a longitudinal study of 311 California hospice providers, Lindley and colleagues reported that the percentage of hospices providing care for children declined from 40% in 2002 to 28% in 2008 (Lindley, Mark, et al., 2013). However, the care offered by pediatric providers varied significantly. In a 7-year time period (2002–2008), the proportion of California pediatric hospices offering nursing care, physician, social, counseling, medication, inpatient, transportation, imaging and laboratory, outpatient, and chemotherapy services increased, while home health aide and homemaker services, equipment and supplies services, and therapy services declined in that same time period (Lindley, 2013). Thus, nursing research suggests that access to pediatric care may be concentrating in a few providers, but that no standard services are offered to children and families.

Consequently, the provision of pediatric end-of-life care may not match the need for care. Using innovative geographic information system techniques, a recent nursing study examined the geographic distribution of pediatric hospice need and supply and identified areas lacking pediatric hospice care in Tennessee over a 3-year time period (Lindley & Edwards, 2015). The study showed a consistent need for care among children with cancer across the state. Most urban areas were supplied by pediatric hospices, except the Knoxville area. The authors identified that while the supply of pediatric hospice care declined, the need for hospice care was unchanging. Therefore, nursing research has begun to identify that access to care, particularly hospice care, which is a continual problem for children and their families.

Research from nurse researchers have found that states lead the way at improving access to care at the end of life for children. Although state Medicaid fee-for-service programs provide comprehensive services for children with life-limiting conditions (Lindley & Lyon, 2013), state PPC policies have sought to improve access to supportive services at diagnosis that are concurrent with treatments and therapies (Keim-Malpass, Hart, & Miller, 2013). For example, the palliative care policy in California did not have any effect on hospice enrollment; however, the policy was positively associated with increasing days in hospice care (Lindley, 2016). The rate of hospice length of stay increased by a factor of 5.61 for children in palliative care counties, compared to children unaffected by the policy. At the federal level, while we expect that the “Concurrent Care for Children” will improve access to care for children at end of life nationally (Lindley, 2011; Keim-Malpass et al., 2013), no empirical studies were identified that explored the impact of the law on access to care. Future research is needed to examine broadly the impact of state policies on access, while developing studies to explore the influence of federal policy. Therefore, based on past contributions, nurse researchers are poised to continue contributing to the evidence on access to pediatric end-of-life care. See Table 18.1 for a display of the current evidence.

There are critical implications for nurse researchers investigating government, health insurers, and care delivery programs’ provision of comprehensive care for children nearing the end of life. First, research questions about costs of pediatric end-of-life care provide an opportunity for nurses to partner with health care economists or gain additional economic training to further their analytic skills. Second, nurses need to bring their clinical knowledge to the quality discussions within the hospice and palliative care research community. For example, nurse expertise in symptom assessment/management, along with child and family communication, is a valuable contribution to ensuring that quality of pediatric end-of-life care is accurately and appropriately measured. Finally, nurse researchers must continue advocating for their programs of research in the provision of comprehensive care for children and their families at end of life. As new legislation is implemented at the state and federal level and policies are enacted within organizations, nurses need to continue to ask questions about the effectiveness of these policies on the care for children and their families.

IOM 2

Cost of Care

Research with adolescents and young adults (AYA) is an avenue through which to examine advanced care planning in pediatrics. Nurses have been involved in research to promote AYA advanced care planning in life-threatening illness and its integration across subspecialties (Weaver et al., 2015, 2016). Researchers report that the cost of advanced care planning is minimal when compared to the long-term benefit to patients, families, institutions, and health care systems. Costs are incurred for training health care clinicians in advanced care planning, in initiating and facilitating conversations to uncover patient and family hopes and priorities, and in discussions about reframing goals of care (Wiener et al., 2015).

Health systems have a cost and quality incentive to integrate palliative care into care of children with life-threatening and life-limiting illnesses. For example, the value in the integration of palliative care with care of AYA is associated with lower inpatient care, intensive care utilization, and lower financial burden for families While costs are incurred to make the upfront investment needed for adequately trained staff and curriculum development, states that have implemented PPC programs described the initial costs as low relative to the long-term savings and advantages of having the programs in place. The disparity in the United States, however, exists because of differences in program availability across states (Wiener et al., 2015). The integration of palliative care, high-quality communication and advanced care planning into neonatal transport is another example of how upfront institutional investment can diminish disparities faced by newborns and their parents and provide care consistent with family goals. In this case, increased costs may be incurred if the parents and ill infant are transported to the receiving institution together, but this intervention maintains high-quality, family-centered palliative care (Dulkerian, Douglas, & Taylor, 2011). Nurse researchers must share their voices in advocacy to raise awareness to prompt research and policy discussions.

Another consideration is costs incurred by institutions that lose staff because of burnout, moral distress, or feelings of disempowerment. Such feelings are perpetuated when staff do not have adequate palliative care training or access to palliative care services. One interdisciplinary team of neonatal researchers (Younge et al., 2015) found lower moral distress and less desire to leave a job within 6 months of implementation of the quality-of-life (QOL) team in the neonatal intensive care unit (NICU). This could impact costs of losing nursing and physician staff and training new staff. Such findings allow us to reframe the addition of PPHC teams as a measure to impact retention and job satisfaction and prevent moral distress among clinicians (Petteys, Goebel, Wallace, & Singh-Carlson, 2015). Considering these interventions not only in terms of patient and family satisfaction, but also in terms of employee job satisfaction, enhancing employee desire to stay in their current position may be an important cost consideration. Therefore, policies must be enacted at the unit, institutional, and governmental levels to promote an (a) interdisciplinary collaboration; (b) support interdisciplinary clinician training; and (c) reimbursement for palliative and end-of-life conversations to promote equitable and high-quality pediatric palliative and end-of-life care for children. These policy measures may also promote clinician health in the workplace so that an experienced, resilient workforce is maintained.

What remains unknown, in the context of the United States, is the feasibility of federal or more comprehensive oversight of standards, funding, access, education, and research. How feasible is it to have comprehensive oversight of standards that foster the provision of adequate funding for services and research, equitable access to care, interdisciplinary education and training, and research, when many broad pediatric palliative and end-of-life care efforts are emphasized at the state level? Children and families may experience inequities in care while living a mile apart but across a state line. How will the call for linking the broader communication competencies be filled across disciplines? Will advanced practice nurses (APNs) be able to bill and be reimbursed for initiating and conducting discussions around advanced care planning and assessing goals of care? What are nurses called to do when these standards conflict with the culture of the institution in which they practice? Will nurses and APNs be allowed to practice to their full scope? We need nurse researchers to partner with nurse clinicians at all levels to understand the limitations imposed upon their care that are not consistent with standards promoted by professional organizations (Hospice and Palliative Nurses Association [HPNA]) or national-level organizations focused on health care policy (IOM, Robert Wood Johnson Foundation [RWJF]). In addition, nurse researchers must share this information as part of their dissemination plan beyond peer-reviewed journals, by sharing research findings and professional concerns with policy makers at institutional, local, state, and federal levels.

Quality of Care

Professional groups promote quality in clinician–family interactions through their evidence-based position statements. One example is the National Association of Neonatal Nurses (NANN) position statement (Catlin, Brandon, Woole, & Mendes, 2015), in which the authors provided an updated and broader perspective on delivering palliative care and conducting conversations around goals of care during the perinatal period. Also highlighted was the importance of communication between parents and the transport team around end-of-life choices if the infant is at risk for dying during transport, indicating that infants and families have palliative care needs that cross settings and that there is heterogeneity within the subset of perinatal palliative care. The HPNA also affirms nursing’s role in communication and advanced care planning in its position statement for both generalist and advanced practice nurses (HPNA, 2013b, 2015a). Position statements such as those create a vision for the membership and outline new developments in the field or responses to current events in the field in order to keep the membership abreast of changes. Interestingly, while the HPNA position statements are geared to those members in clinical practice, it does not emphasize the role of the nurse scientist or researcher in palliative care leadership (HPNA, 2015b). For leadership to be truly transformational and nursing research in communication and advanced care planning to be meaningfully adopted and affect health policy, emphasis on nurses leading research and creating knowledge beyond following and applying the research is warranted.

Nursing research has been influential in creating communication training (Hendricks-Ferguson et al., 2015; Meyer et al., 2009) across disciplines (although including primarily nurses and physicians) and across experience levels. Meyer et al. (2009) examined 5-month outcomes on self-ascribed feelings and competencies and found that interdisciplinary clinicians felt more confident and prepared for difficult conversations and less anxious. This demonstrated that the one-day intervention conducted in the study was rooted in relational abilities and communication skills meaningful to participating clinicians, useful in the clinical setting, and feasible. To improve palliative care communication in the neuro-oncology setting, Hendricks-Ferguson et al. (2015) developed an intervention to test delivery of early palliative and end-of-life communication with families of children with aggressive brain tumors. The intervention dually focused on nurses and physicians working collaboratively with families and incorporated bereaved parents as teachers. Clinicians found it to be helpful overall, but faced challenges regarding scheduling and were concerned about the impact on bereaved parents who served as teachers. Learning which interventions are difficult to implement or burdensome for clinicians is instructive for the development of future interventions. These efforts demonstrate how nurses and nursing research have been foundational to disentangling the challenges of this sensitive communication and for designing feasible and effective interventions to promote high-quality communication and advanced care planning.

The findings of this research can inform policy makers at the institutional level by prompting them to ensure that clinicians have adequate time to conduct these discussions in the outpatient setting and that APNs are allowed to practice to the full scope allowed by their state practice acts and reimbursement policy. For example, an institution prohibits an APN from initiating an advanced care planning discussion, yet he or she may be allowed to do so through the state practice act and be eligible to receive compensation for the advanced care planning discussions. At the state level, policy makers must ensure that mechanisms exist for children and adolescents/young adults to receive comprehensive pediatric palliative and end-of-life care that includes reimbursement for advanced care planning discussions. Several states have implemented comprehensive programs, yet the clear expectation that advanced care planning discussions will take place and include children as they are able is missing (NHPCO, 2012). Finally, comprehensive federal policy to expand the provision of palliative care to those children who would benefit while living with life-limiting and life-threatening diseases is necessary. This would eliminate geographic disparities that afflict children and their families. Nursing research, as outlined here, can inform actions reimbursed through policy. In addition, nurse researchers can partner with policy makers to construct policy that is inclusive and that takes down barriers to care for children and families that is informed by current evidence.

An important way to assess quality of communication and advanced care planning is through dialogue with children and families living with life-threatening illnesses. While Docherty, Miles, and Brandon (2007) outlined the challenges of implementing palliative care in acute care, other nurse researchers have demonstrated a potential path forward. In stem cell transplant, LaFond et al. (2015) found that nurse-led palliative care consultations in the context of hematopoietic stem cell transplant (HSCT) were welcomed and feasible, and families reported satisfaction with this intervention. Similarly, Akard et al.’s (2015) use of digital storytelling represents a mode of quality palliative and end-of-life care delivery that remains with the family after the child has died. These studies stand out as examples in which quality can be more holistically assessed because family perspective is ascertained and provide evidence of outcomes and the return on investment of family-focused interventions that prompt policy makers to create family-focused health and social policy.

The second IOM recommendation also calls for evaluation of palliative care conversations, especially those including advanced care planning and those elucidating goals of care. What also remains to be documented, however, is how these conversations will be evaluated. National efforts at evaluation may be limited because of state variation in PPC coverage and reimbursement and variation in institutional rules and state laws that dictate APN scope of practice. A next step in evaluating palliative care conversations should include assessment of child/family outcomes over time resulting from palliative care conversations and the creation of an evaluation tool of these desired communication efforts. Nurse researchers can assist this process and engage with policy makers to create evidence-based evaluation standards and criteria to guide assessment of conversations, as well as implement such standards and criteria into the educational setting for clinicians and students. Levine et al. (2015), along with oncology nurse researchers, highlighted a gap in the delivery of palliative and end-of-life care during cancer clinical trials; this may be an avenue for future nursing research: Are there trigger points in a clinical trial that should prompt discussions about advance care planning and goals of care? Finally, as the authors note, communication needs cross many pediatric life-threatening illnesses and thus require the same level of attention. A potential policy action rooted in this evidence is that all children enrolled in federally funded or industry-sponsored clinical trials to treat a life-threatening condition or alleviate symptoms of such a condition receive screening for these trigger points while enrolled in research. Nurse researchers could work with funding agencies, parent/family advocacy groups, industry sponsors, and policy makers to design protocols of when to assess for goals of care and how to conduct these conversations in the context of clinical trials.

Access to Care

The number of pediatric palliative and hospice clinicians is small, which means that palliative care needs must be met through other clinicians in primary or subspecialty care. Thus, the need to provide training to generalists in holding conversations about goals of care and advanced care planning is crucial. Tubbs-Cooley et al. (2011) described nurses’ perceptions of pediatric palliative and hospice care (PPHC) across subspecialty units at a large, tertiary children’s hospital with a palliative care consultative service. While the nurses broadly endorsed the significance of palliative care goals and the presence of problems, they differed on the importance of these PPHC goals and problems. Interestingly, the hospital unit was the most significant predictor of how nurses collaborated with the PPC team. Thus, there may be differences across a single institution by unit or individual clinician that may affect the quality of PPC provided in the institution or sought for the child and family in the community. Younge et al. (2015) described the initiation of a NICU-based palliative care program that was found to improve communication with families and provide more aggressive symptom management near end of life, as evidenced through more family meetings and sedative use. Few infants who die in the NICU receive PPC (Brandon, Docherty, & Thorpe, 2007; Feudtner et al., 2011). For example, implementation of a NICU-based palliative care program provided access for children and families who would not otherwise receive care and did not experience increases in withdrawal of life support (Younge et al., 2015); this implementation was associated with increased parental satisfaction (Petteys et al., 2015). Table 18.1 displays the current evidence.

Communication and advanced care planning are foundational and important aspects of pediatric palliative and end-of-life care, yet require skill, sensitivity, and meaningful representation of all clinicians. Nursing research has contributed to efforts to improve these essential skills across disciplines and to provide a pathway for a multitude of voices to be heard. Among the most important of these voices, which our research must continue to include, is that of all children affected by life-threatening illness, both ill children and their healthy siblings. Our research, and the interventions or practice changes that arise from such research endeavors, should be rooted in the developmental state of the children and should incorporate measures that tap into children’s innate creativity and meet their developmental, contextual needs. In order to better understand and elucidate these needs, we may need to utilize innovative research methods to dive deeper into the experiences of children affected by life-threatening illness. Such efforts take training, time, solid mentorship, and adequate funding. These efforts also require collaborative and cooperative research groups that are not afraid of the sampling challenges of pediatric palliative and end-of-life care research, the complexity of research with families, and the nuanced skills that are needed to elicit the perspectives of children. To move the science forward, these urgent needs must be met.

IOM 3

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