Pediatric Palliative Care Program Research Articles

Productivity in Pediatric Palliative Care: Measuring and Monitoring an Elusive Metric

ContextWorkforce productivity is poorly defined in health care. Particularly in the field of pediatric palliative care (PPC), the absence of consensus metrics impedes aggregation and analysis of data to track workforce efficiency and effectiveness. Lack of uniformly measured data also compromises the development of innovative strategies to improve productivity and hinders investigation of the link between productivity and quality of care, which are interrelated but not interchangeable. ObjectivesTo review the literature regarding the definition and measurement of productivity in PPC; to identify barriers to productivity within traditional PPC models; and to recommend novel metrics to study productivity as a component of quality care in PPC. MethodsPubMed® and Cochrane Database of Systematic Reviews searches for scholarly literature were performed using key words (pediatric palliative care, palliative care, team, workforce, workflow, productivity, algorithm, quality care, quality improvement, quality metric, inpatient, hospital, consultation, model) for articles published between 2000 and 2016. Organizational searches of Center to Advance Palliative Care, National Hospice and Palliative Care Organization, National Association for Home Care & Hospice, American Academy of Hospice and Palliative Medicine, Hospice and Palliative Nurses Association, National Quality Forum, and National Consensus Project for Quality Palliative Care were also performed. Additional semistructured interviews were conducted with directors from seven prominent PPC programs across the U.S. to review standard operating procedures for PPC team workflow and productivity. ResultsLittle consensus exists in the PPC field regarding optimal ways to define, measure, and analyze provider and program productivity. Barriers to accurate monitoring of productivity include difficulties with identification, measurement, and interpretation of metrics applicable to an interdisciplinary care paradigm. In the context of inefficiencies inherent to traditional consultation models, novel productivity metrics are proposed. ConclusionsFurther research is needed to determine optimal metrics for monitoring productivity within PPC teams. Innovative approaches should be studied with the goal of improving efficiency of care without compromising value.

Pediatric palliative care in Canada in 2012: a cross-sectional descriptive study.

Pediatric palliative care focuses on comprehensive symptom management and enhancing quality of life for children with life-threatening conditions and their families. Our aim was to describe Canadian programs that provided specialized pediatric palliative care in 2012 and the children who received it and to estimate the proportion of children who might benefit that received specialized care. A cross-sectional descriptive design was used. Specialized pediatric palliative care programs were included in the study if they offered multidisciplinary consulting pediatric palliative care services to a wide range of children and served all populations of children with life-threatening illness regardless of diagnosis. Investigators in programs that had taken part in a prior study were invited to participate. New programs that met the inclusion criteria were identified through snowball sampling within pediatric palliative care networks. Program data were obtained via surveys with coinvestigators, and health record reviews were used to obtain information about the children who received care through the programs. All 13 programs identified, including 3 with a free-standing hospice, agreed to take part in the study. Of the 1401 children who received care, 508 (36.2%) were under 1 year of age, and 504 (36.0%) had a congenital illness or condition originating in the perinatal period. Of the 431 children who died in 2012, 105 (24.4%) died in a critical care setting. Programs with a hospice provided care to 517 children (36.9%). Children in this group tended to be older, more often had a neurologic illness and received care for a longer time than those who received care from programs without a hospice. Overall, 18.6% (95% confidence interval 17.1%-20.3%) of deceased children who might have benefitted from specialized pediatric palliative care based on diagnosis received such care, with 110 (25.2%) receiving care for less than 8 days. Program growth and changes in patients' demographic and clinical characteristics indicate improved reach of programs. However, barriers remain that prevent most children with life-threatening conditions from receiving specialized pediatric palliative care services.

Cancer care for infants, children and adolescents

The World Health Organization (WHO) defines pediatric palliative care as “the active total cares of the child’s body, mind, and spirit and also involves giving support to the family. It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease”. There are some unique aspects of caring for children and their families compared to adult patients that create a different set of challenges for care providers. In this chapter we will review some of the specific characteristics of caring for children and their families that must be considered to deliver optimal and effective pediatric palliative care. Ongoing efforts to raise awareness and educate more professionals about palliative care will hopefully dissolve some of the current barriers that hinder access to pediatric palliative care programs. With strong endorsement from the Academy of Pediatrics, it is hoped that all children with serious medical conditions can be offered concurrent palliative care support, focused on quality and quantity of life.

Pediatric Palliative Care Program versus Usual Care and Healthcare Resource Utilization in British Columbia: A Matched-Pairs Cohort Study.

Evidence on the impact of pediatric palliative care programs (PPCP) on resource utilization is scarce and requires broader measures to include utilization beyond the hospital setting. This research aims to provide a Canadian comparative analysis between children in a PPCP with those under usual care, including hospice use to inpatient resource use measurement. We conducted a retrospective matched-pairs (disease and age at death) cohort comparison of children who died in hospice versus hospital (never enrolled in a PPCP), from 2008 to 2012. Utilization was retrieved from administrative databases and chart review. The main outcomes were number of admissions and length of stay (LOS). Eleven pairs were found. PPCP users were more likely to have advanced directives (100% vs. 27%). After controlling for disease and age, we found no significant difference in number of admissions; however, PPCP users had an increase in admissions post-referral compared to pre-referral (median 3.08 admissions), driven by the need for critical care. We did not find a significant difference in LOS, but observed longer admissions among PPCP users pre- (1.91 days/month) and post-referral (3.66 days/month) compared to usual care. Over 60% of inpatient utilization shifted to the hospice post-referral. The terminal pediatric population referred to PPCP may systematically differ from those under usual care even before enrollment, presenting with higher inpatient utilization in critical care nearing death. A significant portion of inpatient utilization shifted to the hospice, with implications for resource reallocation and enhancements in PPCP referrals.

Cost Analysis and Policy Implications of a Pediatric Palliative Care Program

ContextIn 2010, California launched Partners for Children (PFC), a pediatric palliative care pilot program offering hospice-like services for children eligible for full-scope Medicaid delivered concurrently with curative care, regardless of the child's life expectancy. ObjectivesWe assessed the change from before PFC enrollment to the enrolled period in 1) health care costs per enrollee per month (PEPM), 2) costs by service type and diagnosis category, and 3) health care utilization (days of inpatient care and length of hospital stay). MethodsA pre-post analysis compared enrollees' health care costs and utilization up to 24 months before enrollment with their costs during participation in the pilot, from January 2010 through December 2012. Analyses were conducted using paid Medicaid claims and program enrollment data. ResultsThe average PEPM health care costs of program enrollees decreased by $3331 from before their participation in PFC to the enrolled period, driven by a reduction in inpatient costs of $4897 PEPM. PFC enrollees experienced a nearly 50% reduction in the average number of inpatient days per month, from 4.2 to 2.3. Average length of stay per hospitalization dropped from an average of 16.7 days before enrollment to 6.5 days while in the program. ConclusionThrough the provision of home-based therapeutic services, 24/7 access to medical advice, and enhanced, personally tailored care coordination, PFC demonstrated an effective way to reduce costs for children with life-limiting conditions by moving from costly inpatient care to more coordinated and less expensive outpatient care. PFC's home-based care strategy is a cost-effective model for pediatric palliative care elsewhere.

The Role of Psychology in Pediatric Palliative Care.

Pediatric medicine increasingly has recognized the value of integrating behavioral health in medical care, but this trend has not yet extended to pediatric palliative care. Results from a recent survey of pediatric palliative care programs across the United States indicate that team composition almost never included a psychologist. This article presents a model of collaborative care to optimize the integration of psychosocial and medical aspects of treatment in pediatric palliative care, delineating how a psychologist adds to this model. This article argues that psychology brings specialized skills in assessment, intervention, and research that fit with the premise of palliative care as a holistic approach that relieves symptoms. Systematic inclusion of psychologists on pediatric palliative care teams may help to improve effectiveness of services as well as extend the knowledge base of mental health in pediatric palliative care.

Pediatric Palliative Care and Hospice Program Development in 2016: Strategies for Success in an Ever-Expanding World (P09)

Describe 3 approaches to enhance collaboration between palliative care and cancer researchers. Successful integration of palliative care with oncologic care requires an understanding of specific challenges, opportunities, and strategies. Among challenges, the taskofmeetingpalliative careneedswhile supportingpatients, families, and clinicians who wish to continue cancer-directed treatment, including experimental therapies, is especially complex. Rapid developments in oncologic therapies with better outcomes for some malignancies may make it harder to establish realistic and appropriate goals of care. Other important issues include the appropriate distribution of responsibilities for palliative care within the healthcare team, so that not only are the contributions of clinicians across disciplines and professions valued, optimized, and coordinated, but also that patients with cancer receive the benefits of both generalists and specialists in palliative care. Effective collaboration between palliative care and cancer researchers is essential to enhance the evidentiary foundation for integrated care and to ensure attention to the palliative needs of patients participating in clinical trials. In addition, the development of innovative strategies is neededaswemakeprogress in educating the clinical workforce, including oncologists, other generalists, andpalliative care specialists toprovidepalliative care together with cancer care. Models of integration of palliative care in oncologymust fit the needs of patients, families, and providers in community settings (inpatient and outpatient), where most cancer care in the US is delivered, as well as in academic referral centers. Finally, in our rapidly changing healthcare environment, palliative caremust be paired with cancer care in ways that are appropriate across different systems for reimbursement, including distinctive systems that apply in some care hospitals. In the proposed workshop, we will bring together individuals with relevant expertise from across the country to provide an interprofessional perspective, help participants think about key topics, and engage them in envisioning the future for palliative care at the forefront of cancer care.

Pediatric Palliative Care Training in Fellowship: A National Survey of Adult Palliative Medicine Fellowship Directors and Pediatric Rotation Directors (S731)

•Outline the current state of education and clinical training of adult hospice and palliative medicine (HPM) fellows in pediatric palliative care (PPC).•Compare responses between adult HPM fellowship and pediatric rotation directors regarding the future of PPC education and training. With only seven pediatric palliative care (PPC) programs in the country, there is a lack of PPC physicians. Large numbers of pediatric patients are cared for by palliative physicians trained in adult fellowships. Adult HPM fellowships require pediatric training, but little is known about what is taught and what educators’ thoughts are about this training. To describe adult HPM fellows’ clinical and educational exposure to PPC. An electronic survey was sent to adult HPM fellowship directors and their respective pediatric rotation directors. The survey elicited information about PPC learning objectives, didactics, and fellows’ PPC clinical experience. Finally, directors’ attitudes about the current and future state of PPC training was surveyed. Data was de-identified, and descriptive statistics, Chi-square, and sample t tests were analyzed. 41 of 98 adult HPM fellowship directors and 36 of 80 pediatric rotation directors responded (response rates 42% and 45%, respectively). Most programs indicated their fellows spend time observing PPC teams manage symptom and communication issues rather than independently managing patients with supervision. For example, only 9 of 36 programs allowed adult fellows to independently convert opioids with supervision. Fellowship and pediatric rotation directors felt somewhat (46%) or very (17%) uncomfortable with adult HPM fellows practicing PPC. Fellowship and pediatric rotation directors disagreed about whether they would be likely to develop a pediatric track within their programs (p=0.04). Most adult HPM fellows are observing PPC teams rather than learning to independently manage patients. Both groups of respondents indicated discomfort with adult HPM fellows practicing PPC.

Pediatric palliative care: Comprehensive support for children

Palliative Care (PC), is the set of actions and tools that seek relief from symptoms and suffering of patients and their families to diseases that threaten their lives. This support includes different types of resources covering the clinical, socio.economic, emotional, psychological and spiritual aspects. Due to increasing life expectancy of humans and the fact that chronic diseases account for 60% of premature death, mainly due to cardiovascular diseases, neurological and malignant tumors; has been the global need to create, implement, and enhance knowledge and PC local programs. In pediatrics, there are four main reasons why a child can and should receive pediatric palliative care.(PPC): Cancer, Cystic fibrosis, Metabolic or Mitochondrial and/or Progressive Muscle Diseases and Neurological Disorders. In this article we analyze synthetically the definition, types and basic definitions on the CPP matter. Also, we share the local experience about the first pediatric palliative care program focus in oncologic patients on the Dominican Republic. To review the basics and history of palliative care. To establish the goals and definition of pediatric palliative care, symptom management, terminal illness and integral support. To describe the local pediatric palliative care in oncology unit at Dr.Robert Reid Cabral Children's Hospital in Dominican Republic as the first PPC local program in the country for children with cancer.

Impact of a Pediatric Palliative Care Program on the Caregiver Experience

California’s pediatric palliative care program Partners for Children uses family-centered care coordination to offer hospice-like therapeutic, respite, and pain management services for children delivered concurrently with curative care and regardless of the child’s life expectancy. As an early implementer of concurrent care for children, the program provides evidence of the impact of concurrent care on children and their families. Program impact on caregivers’ perceptions of their levels of stress and worry was measured using random effect growth curve models that included survey wave, caregivers’ perceived family support, and the child’s age and disease severity. All other data were descriptive and subject to univariate analysis. Worry and stress improved in the overall study population between the baseline and follow-up surveys. Family support was predictive of reductions in stress and worry. Disease severity was predictive of stress. Family-centered care coordination is a promising tool to enhance care for children with life-threatening health conditions and reduce caregiver stress and worry. Program strategies, including individualized care planning, access to a 24/7 nurse line, and a focus on the entire family, can be a model for other states as the need for integration of pediatric palliative care for seriously ill children becomes a national public health priority.

Weaving Palliative Care Into the Tapestry of Pediatrics

Since the 2003 Institute of Medicine report When Children Die proclaimed that early integration of palliative care would benefit children through the trajectory of an illness, disease, or condition, children’s hospitals have strived to create pediatric palliative care programs. An innovative model w

The Indirect Effect of Positive Parenting on the Relationship Between Parent and Sibling Bereavement Outcomes After the Death of a Child

ContextFamilies are referred to pediatric palliative care (PPC) programs when a child is diagnosed with a medical condition associated with less than a full life expectancy. When a child dies, PPC programs typically offer a range of bereavement interventions to these families, often focusing on parents. Currently, it is unclear which factors increase the likelihood that bereaved siblings will experience negative outcomes, limiting the development of empirically supported interventions that can be delivered in PPC programs. ObjectivesThe present study explored the relationship between parents' and surviving sibling's mental health symptoms (i.e., post-traumatic stress disorder [PTSD], prolonged grief disorder (PGD), and depression symptoms) after a child's death. Additionally, the extent to which parent functioning indirectly impacted sibling functioning through parenting behaviors (i.e., positive parenting and parent involvement) was also examined, with a specific focus on differences based on parent gender. MethodsSixty bereaved parents and siblings (aged 8–18) who enrolled in a PPC program from 2008 to 2013 completed measures of PTSD, PGD, and depression related to the loss of a child/sibling. Siblings also completed a measure of general parenting behaviors. ResultsMaternal, but not paternal, symptoms of PTSD and PGD were directly associated with sibling outcomes. Paternal symptoms were associated with sibling symptoms indirectly, through parenting behaviors (i.e., via decreasing positive parenting). ConclusionThese results underscore the importance of examining both maternal and paternal influences after the death of a child, demonstrate differential impact of maternal vs. paternal symptoms on siblings, and stress the importance of addressing postloss symptoms from a family systems perspective.

The Benefits of a Nurse-Driven, Patient- and Family-Centered Pediatric Palliative Care Program.

This article describes the program and outcomes of a nurse driven, patient- and family-centered pediatric advanced comprehensive care team (PACCT) palliative program. This care delivery model improved patient outcomes by providing care across the healthcare continuum for pediatric patients. Since the inception of PACCT, no child has died on a ventilator in the pediatric ICU associated with end-of-life-related issues.

Pediatric palliative care in the community

Early integration of pediatric palliative care (PPC) for children with life-threatening conditions and their families enhances the provision of holistic care, addressing psychological, social, spiritual, and physical concerns, without precluding treatment with the goal of cure. PPC involvement ideally extends throughout the illness trajectory to improve continuity of care for patients and families. Although current PPC models focus primarily on the hospital setting, community-based PPC (CBPPC) programs are increasingly integral to the coordination, continuity, and provision of quality care. In this review, the authors examine the purpose, design, and infrastructure of CBPPC in the United States, highlighting eligibility criteria, optimal referral models to enhance early involvement, and fundamental tenets of CBPPC. This article also appraises the role of CBPPC in promoting family-centered care. This model strives to enhance shared decision making, facilitate seamless handoffs of care, maintain desired locations of care, and ease the end of life for children who die at home. The effect of legislation on the advent and evolution of CBPPC also is discussed, as is an assessment of the current status of state-specific CBPPC programs and barriers to implementation of CBPPC. Finally, strategies and resources for designing, implementing, and maintaining quality standards in CBPPC programs are reviewed.

Abstracts from theCenter to Advance Palliative Care National Seminar Pathways to Quality Palliative CareNovember 13–15, 2014Orlando, Florida

Abstracts from theCenter to Advance Palliative Care National Seminar Pathways to Quality Palliative Care<i>November 13–15, 2014</i><i>Orlando, Florida</i>

Pediatric Palliative Care: Current Evidence and Evidence Gaps

ospice and palliative medicine (HPM) is an emerging medical subspecialty initially recognized by the American Board of Medical Specialties in 2006. As the Institute of Medicine reported in 2014, health care delivery and the challenges of care at the end of children’s lives have evolved significantly over the past 15 years. The last decade has seen the growth of pediatric palliative care (PPC) programs at children’s hospitals and a transformation of the field. Fifty percent of children’s hospitals nationwide have a PPC program, with a peak in new program development occurring in 2008. New programs are almost immediately impactful, experience high referral volumes, and must quickly expand their workforce. Although HPM has a growing body of literature, the evidence for PPC appears to lag behind the clinical growth. Here we provide a focused and practical summary of evidence in pediatric HPM as a primer for those practicing in other subspecialties. Specifically, we review evidence by focusing on a few of the domains in HPM : (1) communication and psychosocial support; (2) pain and symptom management; (3) end-of-life care; and (4) ways to build a better health care system.We hope to strengthen understanding and partnerships between HPM and non-HPM clinicians and investigators and thereby improve patient care for children with serious illnesses.

Effect of pediatric palliative care programs on health care resource utilization and costs among children with life-threatening conditions: a systematic review of comparative studies.

Pediatric palliative care is a relatively new and evolving field, and the cost of pediatric palliative care programs is unclear. We conducted a systematic review to compare inpatient health care utilization and costs among children with life-threatening conditions who have accessed a pediatric palliative care program and those who have not. We searched MEDLINE, Embase, CINAHL and LILACS databases from January 2000 to July 2013, as well as the grey literature, for experimental or observational studies that compared pediatric palliative care programs with usual care. Outcomes of interest included hospital admissions, length of stay and health care costs. Of the 5193 records identified, we reviewed 109 in full and included 11 in our study. The overall quality of the studies was moderate to low. We observed mixed results for all outcomes. Compared with patients receiving usual care, fewer patients in the palliative care group had hospital admissions and fewer of those with cancer had planned hospital admissions. In contrast, no effects were observed regarding the overall number of hospital, emergency or outpatient admissions. Conflicting results were observed with regards to critical care utilization. Studies showed a trend toward shorter lengths of stay in hospital in the palliative care group. However, a single study that also considered inpatient time in hospice facilities found an increase in total length of stay, which showed a shift in the setting of health care utilization. We observed no conclusive trend in the effects on cost. Evidence suggests that pediatric palliative care programs may result in a shift of utilization to other health care settings beyond hospital care. These settings should be considered when measuring resource utilization and costs.

Payment Reform: A Key Ingredient in the Financial Case for Pediatric Palliative Care (TH320)

•Identify current and potential sources of revenue and reimbursement to support a pediatric palliative care program.•Describe components of US healthcare reform that support a business model for pediatric palliative care.•Review examples supporting pediatric palliative care as a strategy in an accountable care organization. The majority of children at the end of life in the United States do not have access to designated pediatric palliative care (PPC) services. A key obstacle to implementing inpatient and outpatient/community-based PPC programs appears to be a lack of adequate reimbursement to make a financial case. This session reviews the current pillars of PPC reimbursement in the United States: fee-for-service (including the 2010 Concurrent Care for Children requirement), philanthropy, and institutional support. Looking into the future, through current payment reform, the fee-for-service model appears to be moving toward value-based or accountable care organization/bundled billing strategies. PPC can be a key health-system strategy in realigning healthcare delivery, as population health management includes seriously ill children (highest risk and highest cost). Emerging data will be reviewed to help participants make the case that the integration of PPC not only improves quality of life and symptom management during the end-of-life period for children but also lowers costs.

Contributions of palliative care to pediatric patient care.

To provide an overview of pediatric palliative care (PPC) as it relates to children and families living with oncologic disease. Journal articles, clinical research reports, clinical guidelines, and national statistics. As new treatment protocols become available, the need for simultaneous supportive PPC, including adequate pain and symptom management, is evident. Further research and PPC program development is necessary for adherence to the current recommendation that PPC should be initiated at the time of diagnosis and continue throughout the course of a child's disease. Palliative care nursing holds a specific role in the pediatric oncology setting. Registered nurses and advanced practice nurses should be adequately trained in PPC because they are in an optimal role to contribute to interdisciplinary PPC for pediatric oncology patients and their families.

Innovations in Research with Medically Fragile Populations: Using Bulletin Board Focus Groups

A new group of medically fragile young adults are graduating from pediatric palliative care programs with limited expectations to live beyond early adulthood, and no comparable adult services to support their complex needs. Accessing this population is difficult because of the complexity of their conditions, the extensive personal and equipment supports that limit feasibility for travel, and divergent communication abilities. Therefore, we undertook a descriptive case study using an asynchronous modification of an online focus group, a bulletin board focus group (BBFG). The greatest strengths of the BBFG are the appeal of this methodology for young adults and the multi day focus group becomes both a community and an intervention. An important limitation of this method was participant follow through on discussion threads. This BBFG provided rich and varied types of data, and very positive participant experiences.