Pilot Evaluation of a Palliative and End-of-Life Communication Intervention for Parents of Children With a Brain Tumor.

Providing timely palliative and end-of-life care (PC/EOL) information to parents of children with a serious illness is a national health care priority. The goals of this study were to determine feasibility, acceptability, and parent responses related to a PC/EOL communication intervention, titled "Communication Plan: Early through End of Life (COMPLETE)" to parents of children with a brain tumor. The study was a 2-site prospective, single-group pilot study targeting parents' stress and coping outcomes. The sample included 13 parents of 11 children (ie, 11 families). During the first 6 months postdiagnosis, we evaluated parent outcomes at 4 time points (baseline and 3 post-sessions). Our findings included significant decline in decision regret ( P = .0089); strong, significantly increased hope ( P ≤ .0001); and significantly decreased uncertainty ( P = .04). Over time, more than half of the parents (61.5%) preferred to receive information about their child's current condition and PC/EOL options. Our findings provide evidence to suggest that the COMPLETE intervention is feasible and acceptable and produces promising effects on 3 parent outcomes (ie, decision regret, hope, and uncertainty) in parents of children with a brain tumor. Further research is indicated to evaluate COMPLETE with a larger sample of parents of children with cancer and with a control group.

Integrating Palliative Care in Pediatric Oncology: Evidence for an Evolving Paradigm for Comprehensive Cancer Care.

BACKGROUND: The demonstrated benefit of integrating palliative care (PC) into cancer treatment has triggered an increased need for PC services. The trajectory of integrating PC in comprehensive cancer centers, particularly pediatric centers, is unknown. We describe our 8-year experience of initiating and establishing PC with the Quality of Life Service (QoLS) at St. Jude Children's Research Hospital. METHODS: We retrospectively reviewed records of patients seen by the QoLS (n=615) from March 2007 to December 2014. Variables analyzed for each year, using descriptive statistics, included diagnostic groups, QoLS encounters, goals of care, duration of survival, and location of death. RESULTS: Total QoLS patient encounters increased from 58 (2007) to 1,297 (2014), new consults increased from 17 (2007) to 115 (2014), and mean encounters per patient increased from 5.06 (2007) to 16.11 (2014). Goal of care at initial consultation shifted from primarily comfort to an increasing goal of cure. The median number of days from initial consult to death increased from 52 days (2008) to 223 days (2014). A trend toward increased outpatient location of death was noted with 42% outpatient deaths in 2007, increasing to a majority in each subsequent year (range, 51%-74%). Hospital-wide, patients receiving PC services before death increased from approximately 50% to nearly 100%. CONCLUSIONS: Since its inception, the QoLS experienced a dramatic increase in referrals and encounters per patient, increased use by all clinical services, a trend toward earlier consultation and longer term follow-up, increasing outpatient location of death, and near-universal PC involvement at the end-of-life. The successful integration of PC in a comprehensive cancer center, and the resulting potential for improved care provision over time, can serve as a model for other programs on a broad scale.

Research Priorities in Pediatric Palliative Care.

OBJECTIVE: To synthesize the perspectives of a broad range of pediatric palliative care (PPC) clinicians and parents, to formulate a consensus on prioritization of the PPC research agenda. STUDY DESIGN: A 4-round modified Delphi online survey was administered to PPC experts and to parents of children who had received PPC. In round 1, research priorities were generated spontaneously. Rounds 2 and 3 then served as convergence rounds to synthesize priorities. In round 4, participants were asked to rank the research priorities that had reached at least 80% consensus. RESULTS: A total of 3093 concepts were spontaneously generated by 170 experts and 72 parents in round 1 (65.8% response rate [RR]). These concepts were thematically organized into 78 priorities and recirculated for round 2 ratings (n = 130; 53.7% RR). Round 3 achieved response stability, with 31 consensus priorities oscillating within 10% of the mode (n = 98; 75.4% RR). Round 4 resulted in consensus recognition of 20 research priorities, which were thematically grouped as decision making, care coordination, symptom management, quality improvement, and education. CONCLUSIONS: This modified Delphi survey used professional and parental consensus to identify preeminent PPC research priorities. Attentiveness to these priorities may help direct resources and efforts toward building a formative evidence base. Investigating PPC implementation approaches and outcomes can help improve the quality of care services for children and families.

Ethical decision making about end-of-life care issues by pediatric oncologists in economically diverse settings.

PURPOSE: Pediatric cancer represents 1% to 4% of all cancers worldwide, with the majority of diagnoses in developing countries where mortality remains much higher than that in high-income countries. We sought to describe differences in ethical decision-making at the end of life among an international sample of pediatric oncologists practicing in countries with a variety of income levels and resource settings. METHODS: Pediatric oncologists subscribing to an educational international oncology Web site were invited to complete a 38-item web-based survey investigating ethical domains related to end-of-life care: level of care, fiduciary responsibility, decision making, and justice. RESULTS: Responses were received from 401 physicians in 83 countries, with most respondents practicing in middle-income or high-income countries. Significant differences in attitudes toward ethical issues existed across the national developmental indices. CONCLUSIONS: Further education on ethical principles is warranted in pediatric oncology, particularly among oncologists practicing in low-income or middle-income countries.

Evaluation of Physician and Nurse Dyad Training Procedures to Deliver a Palliative and End-of-Life Communication Intervention to Parents of Children with a Brain Tumor.

When a child's prognosis is poor, physicians and nurses (MDs/RNs) often struggle with initiating discussions about palliative and end-of-life care (PC/EOL) early in the course of illness trajectory. We describe evaluation of training procedures used to prepare MD/RN dyads to deliver an intervention entitled: Communication Plan: Early Through End of Life (COMPLETE) intervention. Our training was delivered to 5 pediatric neuro-oncologists and 8 pediatric nurses by a team of expert consultants (i.e., in medical ethics, communication, and PC/EOL) and parent advisors. Although half of the group received training in a 1-day program and half in a 2-day program, content for all participants included 4 modules: family assessment, goal-directed treatment planning, anticipatory guidance, and staff communication and follow-up. Evaluations included dichotomous ratings and qualitative comments on content, reflection, and skills practice for each module. Positive aspects of our training included parent advisers' insights, emphasis on hope and non-abandonment messages, written materials to facilitate PC/EOL communication, and an MD/RN dyad approach. Lessons learned and challenges related to our training procedures will be described. Overall, the MDs and RNs reported that our PC/EOL communication-training procedures were helpful and useful. Future investigators should carefully plan training procedures for PC/EOL communication interventions.

Implementation and evaluation of an automated patient death notification policy at a tertiary pediatric oncology referral center.

BACKGROUND: Not knowing about a child's death can result in poor quality of care coordination among staff and poor quality bereavement care for families. The purpose of this project was to create, implement, and evaluate an automated Patient Death Notification policy and procedure (PDNPP). MEASURES: Baseline and follow-up surveys of clinical staff. INTERVENTION: Implementation of a PDNPP that created an automated, systematic process for staff notification of patient deaths. OUTCOMES: Ninety-six percent of the staff rated the PDNPP as a significant improvement; 91% reported being "very" or "somewhat" satisfied with the PDNPP, whereas only 44% of the staff were satisfied with the process at baseline. CONCLUSIONS/LESSONS LEARNED: Implementation of an automated PDNPP was feasible and improved staff satisfaction about how they were informed of patient deaths. Staff also reported being notified about patient deaths more quickly, performing their jobs more efficiently, being able to avoid doing something that might upset the deceased patient's family, and being able to better provide support to bereaved families.

Challenging issues in pediatric oncology.

Improvements in protocol-driven clinical trials and supportive care for children and adolescents with cancer have reduced mortality rates by more than 50% over the past three decades. Overall, the 5-year survival rate for patients with pediatric cancer has increased to approximately 80%. Recognition of the biological heterogeneity within specific subtypes of cancer, the discovery of genetic lesions that drive malignant transformation and cancer progression, and improved understanding of the basis of drug resistance will undoubtedly catalyze further advances in risk-directed treatments and the development of targeted therapies, boosting the cure rates further. Emerging new treatments include novel formulations of existing chemotherapeutic agents, monoclonal antibodies against cancer-associated antigens, and molecular therapies that target genetic lesions and their associated signaling pathways. Recent findings that link pharmacogenomic variations with drug exposure, adverse effects, and efficacy should accelerate efforts to develop personalized therapy for individual patients. Finally, palliative care should be included as an essential part of cancer management to prevent and relieve the suffering and to improve the quality of life of patients and their families.

Changes in medical care at a pediatric oncology referral center after placement of a do-not-resuscitate order.

OBJECTIVE: Parents may fear that a do-not-resuscitate (DNR) order will result in reduction of the level, quality, and priority of their child's medical care. We therefore assessed medical care that was continued, added, and discontinued after a DNR order was placed in the medical record. PATIENTS/METHODS: Retrospective review of the charts of 200 pediatric oncology patients at St. Jude Children's Research Hospital who died between July 1, 2001 and February 28, 2005, were younger than 22 years old at death, and had a documented DNR order. Medical interventions that were added (between the DNR order and death), continued (not discontinued between 24 hours before and 72 hours after DNR), and discontinued (within 72 hours after DNR) were identified and compared by using binomial proportions. RESULTS: With the exception of chemotherapy, the studied medical interventions that patients were receiving at the time of the DNR order were continued in 66.7% to 99.3% of cases. Chemotherapy was continued in 33.3%. The most frequently added interventions were oxygen, steroids, and pain medicine. The most frequently discontinued interventions were laboratory draws, chemotherapy, antibiotics, and parenteral nutrition. CONCLUSIONS: In this cohort of pediatric oncology patients, the medical interventions being received were continued with a high frequency after placement of a DNR order. Chemotherapy was continued only in a minority of patients, possibly signifying a shift in goals. These findings may help to reassure families that a DNR order need not result in a change in any of their child's medical therapies which appropriately advance the defined goals of care.

Availability of palliative care services for children with cancer in economically diverse regions of the world.

PURPOSE: We assessed the availability and quality of palliative care for children with cancer according to national income per capita. METHODS: We surveyed physicians who care for children with cancer using the Cure4Kids website (http://www.cure4kids.org). Queries addressed oncology practice site; reimbursement; specialised palliative care, pain management and bereavement care; location of death; decision-making support and perceived quality of care. Responses were categorised by low-, middle- and high-income country (LIC, MIC and HIC). RESULTS: Of 262 completed questionnaires from 58 countries (response rate, 59.8%), 242 were evaluable (55%). Out-of-pocket payment for oncology (14.8%), palliative care (21.9%) and comfort care medications (24.3%) was most likely to be required in LIC (p<0.001). Availability of specialised palliative care services, pain management, bereavement care and institutional or national decision-making support was inversely related to income level. Availability of high-potency opioids (p=0.018) and adjuvant drugs (p=0.006) was significantly less likely in LIC. Physicians in LIC were significantly less likely than others to report high-quality pain control (p<0.001), non-pain symptom control (p=0.003) and emotional support (p=0.001); bereavement support (p=0.035); interdisciplinary care (p<0.001) and parental participation in decisions (p=0.013). CONCLUSION: Specialised palliative care services are unavailable to children with cancer in economically diverse regions, but particularly in LIC. Access to adequate palliation is associated with national income. Programme development strategies and collaborations less dependent on a single country's economy are suggested.

Decision making by parents of children with incurable cancer who opt for enrollment on a phase I trial compared with choosing a do not resuscitate/terminal care option.

PURPOSE: Parents of children with incurable cancer make complex and difficult decisions about remaining treatment options. We compared the self-reported rationale, good parent definition, and desired clinical staff behaviors of parents who recently decided for phase I (P1) chemotherapy with parents who chose a do not resuscitate (DNR) or terminal care (TC) option. PATIENTS AND METHODS: Sixty-two parents of 58 children were asked for the basis of their decision, their definition of a good parent, and what staff behaviors supported their good parent role. After semantic content analysis, results were compared in the P1 versus DNR/TC groups. These categories were mutually exclusive but did not necessarily represent an either/or decision. RESULTS: Thirty-one decisions were for P1 chemotherapy and 27 for DNR/TC. Median survival time after study enrollment was greater in the P1 group (0.4 v 0.1 years). Most P1 group parents reported having felt compelled to continue cancer-directed therapy (71% v 7%), whereas those who opted for DNR/TC cited quality of life (QOL; 74% v 3%) and patient wishes (67% v 13%). Decision factors common to both groups were medical facts, doing right, and others' opinions. Both groups believed that a good parent did right, provided support and presence, and sacrificed for the child. The groups desired similar support from clinicians and expressed gratitude. CONCLUSION: Despite similar definitions of a good parent and desired staff behaviors, parents in the P1 group reported having felt compelled to continue cancer-directed therapy, whereas QOL and patient wishes were emphasized in decisions for DNR/TC.

Factors that distinguish symptoms of most concern to parents from other symptoms of dying children.

In a previous study, we conducted telephone interviews with parents 6 to 10 months after their child's death from cancer, using open-ended questions to identify the type and frequency of cancer-related symptoms that most concerned them during the last week of their child's life. Because the parents identified many clinically striking symptoms (n=109) that were not of most concern to them, we conducted a secondary analysis of these interviews (48 mothers and four fathers of 52 patients) to identify descriptive factors associated with the parents' level of concern. Six descriptive factors were associated with symptoms of most concern and 10 factors with symptoms not of most concern. Ten of these 16 factors occurred in both categories, indicating that clinicians should directly query parents to identify the symptoms that concern parents the most. Six factors differed between the two categories, and only one (the continuous distress caused by a symptom that is unrelieved) was unique to the category of symptoms of most concern. Five factors (symptom present for at least one week, symptom not seen as remarkable by the parent or causing no distress to the child, symptom well managed, symptom improved, and symptoms for which the parent felt adequately prepared) were unique to the category of symptoms not of most concern. By inquiring about symptoms of most concern and factors that influence parental concern, clinicians may be better able to direct care efforts to reduce patients' and parents' distress and support parents during the difficult end-of-life period.

Use of epidural and peripheral nerve blocks at the end of life in children and young adults with cancer: the collaboration between a pain service and a palliative care service.

BACKGROUND: Clinicians may avoid continuous pain blocks in pediatric cancer patients at the end of life for fear of complications or of interfering with the desired location of death. OBJECTIVES: To examine the impact of epidural or peripheral nerve catheters on pain control in children and young adults with cancer within the last 3 months of life. METHODS: We retrospectively reviewed the medical records to assess pain scores, systemic opioid requirements, and impact on death at the preferred location. RESULTS: Ten patients (4.4-21.3 years of age), nine with solid tumors, one with lymphoma, had 14 devices (11 epidural, 3 peripheral nerve catheters) for a range of 3-81 days. Twelve of 13 catheters provided improvement by at least one of three criteria: improved mean pain scores at 24 h (8 of 13) and decreased opioid requirement at 24 h in nine cases and at day 5 in nine cases. Eight patients died in their preferred setting. Six patients had catheters (five epidural, one peripheral) until death, including two who died at home. In some cases, typical contraindications for indwelling catheters (spinal metastasis, vertebral fracture, thrombocytopenia, fever) were superseded by palliative care needs. We found no bleeding, infectious, or neurological complications. CONCLUSIONS: Our findings suggest that continuous catheter-delivered pain blockade at the end of life contributes to analgesia, moderates opioid requirements, and usually does not preclude death at the preferred location.

Race does not influence do-not-resuscitate status or the number or timing of end-of-life care discussions at a pediatric oncology referral center.

BACKGROUND: End-of-life care (EOLC) discussions and decisions are common in pediatric oncology. Interracial differences have been identified in adult EOLC preferences, but the relation of race to EOLC in pediatric oncology has not been reported. We assessed whether race (white, black) was associated with the frequency of do-not-resuscitate (DNR) orders, the number and timing of EOLC discussions, or the timing of EOLC decisions among patients treated at our institution who died. METHODS: We reviewed the records of 380 patients who died between July 1, 2001 and February 28, 2005. Chi(2) and Wilcoxon rank-sum tests were used to test the association of race with the number and timing of EOLC discussions, the number of DNR changes, the timing of EOLC decisions (i.e., DNR order, hospice referral), and the presence of a DNR order at the time of death. These analyses were limited to the 345 patients who self-identified as black or white. RESULTS: We found no association between race and DNR status at the time of death (p = 0.57), the proportion of patients with DNR order changes (p = 0.82), the median time from DNR order to death (p = 0.51), the time from first EOLC discussion to DNR order (p = 0.12), the time from first EOLC discussion to death (p = 0.33), the proportion of patients who enrolled in hospice (p = 0.64), the time from hospice enrollment to death (p = 0.2) or the number of EOLC discussions before a DNR decision (p = 0.48). CONCLUSION: When equal access to specialized pediatric cancer care is provided, race is not a significant factor in the presence or timing of a DNR order, enrollment in or timing of enrollment in hospice, or the number or timing of EOLC discussions before death.

Retinoblastoma: one world, one vision.

Retinoblastoma is curable when diagnosed early and treated appropriately; however, the prognosis is dismal when the basic elements of diagnosis and treatment are lacking. In developing countries, poor education, lower socioeconomic conditions, and inefficient health care systems result in delayed diagnosis and suboptimal care. Furthermore, the complexity of multidisciplinary care required is seldom possible. Whereas ocular salvage is a priority in the Western world, death from retinoblastoma is still a major problem in developing countries. To bring the 2 ends of this spectrum together and provide a forum for discussion, the "One World, One Vision" symposium was organized, at which clinicians and researchers from various cultural, geographic, and socioeconomic backgrounds converged to discuss their experiences. Strategies for early diagnosis in developing countries were discussed. Elements of the development of retinoblastoma centers in developing countries were discussed, and examples of successful programs were highlighted. An important component in this process is twinning between centers in developing countries and mentor institutions in high-income countries. Global initiatives by nongovernmental organizations such as the International Network for Cancer Treatment and Research, Orbis International, and the International Agency for Prevention of Blindness were presented. Treatment of retinoblastoma in developing countries remains a challenge; however, it is possible to coordinate efforts at multiple levels, including public administrations and nonprofit organizations, to improve the diagnosis and treatment of retinoblastoma and to improve the outcome for these children.

Integration of palliative care practices into the ongoing care of children with cancer: individualized care planning and coordination.

Most parents of children with cancer have dual primary goals: a primary cancer-directed goal of cure and a primary comfort-related goal of lessening suffering. Early introduction of palliative care principles and practices into their child's treatment is respectful and supportive of these goals. The Individualized Care Planning and Coordination Model is designed to integrate palliative care principles and practices into the ongoing care of children with cancer. Application of the model helps clinicians to generate a comprehensive individualized care plan that is implemented through Individualized Care Coordination processes as detailed here. Clinicians' strong desire to provide compassionate, competent, and sensitive care to the seriously ill child and the child's family can be effectively translated into clinical practice through these processes.

National survey of pediatric residency program directors and residents regarding education in palliative medicine and end-of-life care.

PURPOSE: To determine how palliative and end-of-life care can best be incorporated into the training of pediatric residents. METHODS: From 2001 to 2002, we surveyed 246 directors and 235 residents of pediatric residency programs. We elicited responses regarding (1) perceived relevance of pediatric palliative care, (2) residents' exposure to palliative medicine, (3) competency of faculty and matriculating residents in palliative care, (4) core palliative medicine competencies, and (5) the best teaching/learning format for palliative care. RESULTS: Fifty-five directors (22.4%) and 98 residents (42.0%) responded. More than three quarters of directors (78.1%) agreed with the statement that palliative care as a competency is "somewhat" to "very" important. Approximately one third (32.7%) agreed with the statement that their residents were not clinically exposed to end-of-life care; 99.0% of the residents indicated participation in such care. Almost one third of directors (27.3%) indicated that they had no faculty available to teach palliative care. Only 38.2% agreed with the statement that matriculating residents are competent in palliative medicine while many residents indicated having limited or no training in core palliative care competencies. DISCUSSION/CONCLUSIONS: For palliative care principles to be better incorporated into pediatric practice, they must be incorporated into residency education, optimally through informal teaching and during rounds. Finding ways to teach residents palliative medicine during clinical "teachable moments" and standardizing didactic curricula should become a priority in palliative and end-of-life care education.

Patient-reported outcomes in end-of-life research in pediatric oncology.

OBJECTIVE: The purpose of this review of published literature was to identify the number and focus of empirically based papers that included research methods used to directly solicit patient-reported outcomes (PRO) from pediatric oncology patients at end of life. METHODS: Key terms including "pediatric or child and oncology or cancer and end of life or palliative or hospice or dying" were used with five data bases (PubMed, Ovid, Cochrane, PsycInfo & PsycArticles, and CINAHL) for English language literature published between January, 2001 and June, 2006. All retrieved documents were independently reviewed by a panel of six (nurses, physicians, and one psychologist) with backgrounds in pediatric oncology. RESULTS: Thirty-five publications were identified but nine (25.7%) were eliminated from the analysis as they did not meet inclusion criteria. Of the remaining 26, four (15.4%) included patient-reported outcomes, six (23.1%) included parent only-reported outcomes, and five (19.2%) included staff only-reported outcomes. Nine (34.6%) were retrospective medical record reviews. Two (7.7%) included parent and record review data or parent and physician reports. CONCLUSIONS: Empirically-based end-of-life publications in pediatric oncology are relatively few in number and nearly 85% of completed studies do not include PRO.

A process to facilitate decision making in pediatric stem cell transplantation: the individualized care planning and coordination model.

Providers of care for children undergoing stem cell transplantation (SCT) skillfully combine the roles of scientist and clinician. As scientists, they apply scientific methods and disease theory in the creation and testing of new therapies and in the careful observation and exploration of treatment outcomes. As clinicians, they are capable of intuitively delivering care in a patient- and family-centered context of meaning and life values. The specialty of SCT has inherent aspects that make treatment decision making complex and potentially contentious. Having a strategy ready to implement in advance or at the time when treatment decisions need to be made will facilitate and enhance the decision making process for both the health care team and family members. Here we introduce the individualized care planning and coordination (ICPC) model as a practical approach to facilitate ethical and effective decision making in pediatric SCT settings. The ICPC is a 3-step model comprising (1) relationship--understanding the illness experience from the perspective of the patient and family, sharing relevant information, and assessing ongoing needs; (2) negotiation--prognosticating, establishing goals of care, and discussing treatment options; and (3) plan--generating a comprehensive plan of care that includes life and medical plans. Based on a foundation of a care of competence, empathy, compassion, communication, and quality, the ICPC model aims to diminish contentious family-staff interactions that can lead to mistrust and help guide treatment decision making. The ICPC model enhances communication among patients, families, and clinicians by revealing patient and family values and medical and quality-of-life priorities before reaching or even during critical decision points in the transplantation process.