Parent and patient perceptions of medical marijuana in the childhood cancer context.

BACKGROUND: Medical marijuana (MM) is legal in 34 US jurisdictions. Yet, little is known about patient and parent perceptions of MM in pediatric cancer care. We examined attitudes, beliefs, and experiences regarding MM among parents of children with cancer and adolescent and young adult (AYA) patients, to help frame future research initiatives. PROCEDURE: In this qualitative study, we conducted semi-structured, one-on-one interviews with parents and AYAs at a comprehensive cancer center. Interviews were audio-recorded, transcribed, and coded using both descriptive and inductive coding approaches. We used content and framework analysis to identify key themes. RESULTS: Fifteen parents and 15 AYAs enrolled. Participants were generally receptive to MM use, concurrently weighing benefits and risks. Participants most often endorsed MM use for relief of nausea, anorexia, and pain. Simultaneously, participants identified concerns about MM, including potential physiologic and psychological effects on children and lack of research. However, concerns were frequently minimized, relative to chemotherapy or supportive care medications with perceived greater side effect profiles. Many participants expressed uncertainty regarding legal access, citing complex processes to obtain MM. Few participants had discussed MM with their oncologist, instead seeking guidance from the internet, family, or peers. Importantly, we elicited several misconceptions regarding MM, including its utility as cancer-directed therapy. CONCLUSION: Patients and families are receptive to using MM, motivated by potential for symptom relief and cancer-directed effects. Yet, lack of empiric evidence is a barrier, underscoring the need for robust clinical trial data to support MM recommendations and use.

Response to Suffering of the Seriously Ill Child: A History of Palliative Care for Children.

Most pediatric clinicians aspire to promote the physical, emotional, and developmental well-being of children, hoping to bestow a long and healthy life. Yet, some infants, children, and adolescents confront life-threatening illnesses and life-shortening conditions. Over the past 70 years, the clinician's response to the suffering of these children has evolved from veritable neglect to the development of pediatric palliative care as a subspecialty devoted to their care. In this article, we review the history of how clinicians have understood and responded to the suffering of children with serious illnesses, highlighting how an initially narrow focus on anxiety eventually transformed into a holistic, multidimensional awareness of suffering. Through this transition, and influenced by the adult hospice movement, pediatric palliative care emerged as a new discipline. Becoming a discipline, however, has not been a panacea. We conclude by highlighting challenges remaining for the next generation of pediatric palliative care professionals to address.

Provider Perspectives on Use of Medical Marijuana in Children With Cancer.

BACKGROUND: Although medical marijuana (MM) may have utility in the supportive care of children with serious illness, it remains controversial. We investigated interdisciplinary provider perspectives on legal MM use in children with cancer. METHODS: We sent a 32-item, cross-sectional survey to 654 pediatric oncology providers in Illinois, Massachusetts, and Washington characterizing MM practices, knowledge, attitudes, and barriers. Forty-eight percent responded; 44% (n = 288) were included in analyses. Providers were stratified by status as legally eligible to certify (ETC) for MM. We used Fisher's exact and Wilcoxon rank tests and univariate and multivariate logistic regression models for group comparisons. RESULTS: The provider median age was 35 years (range 22-70 years); 33% were ETC (83 physicians; 13 Washington state advance practice providers). Thirty percent of providers received ≥1 request for MM in the previous month. Notably, only 5% of all providers knew state-specific regulations. ETC providers were more likely to know that MM is against federal laws (P < .0001). Whereas most providers (92%) reported willingness to help children with cancer access MM, in adjusted models, ETC providers were less likely to indicate approval of patient MM use by smoking, oral formulations, as cancer-directed therapy, or to manage symptoms (P < .005 for all). Forty-six percent of all providers cited the absence of standards around formulations, potency, or dosing to be the greatest barrier to recommending MM. CONCLUSIONS: Most pediatric oncology providers are willing to consider MM use in children with cancer and receive frequent inquiries. However, ETC providers endorse less favorable attitudes overall. The absence of standards is an important barrier to recommending MM.

Medical marijuana in pediatric oncology: A review of the evidence and implications for practice.

Medical marijuana (MM) has become increasingly legal at the state level and accessible to children with serious illness. Pediatric patients with cancer may be particularly receptive to MM, given purported benefits in managing cancer-related symptoms. In this review, we examine the evidence for MM as a supportive care agent in pediatric oncology. We describe the current legal status of MM, mechanism of action, common formulations, and potential benefits versus risks for pediatric oncology patients. We offer suggestions for how providers might approach MM requests. Throughout, we comment on avenues for future investigation on this growing trend in supportive care.

Pediatric palliative oncology: the state of the science and art of caring for children with cancer.

PURPOSE OF REVIEW: Pediatric palliative oncology (PPO) is an emerging field that integrates the principles of palliative care early into the illness trajectory of children with cancer. PPO providers work with interdisciplinary clinicians to provide optimal medical and psychosocial care to children with cancer and their families. Ongoing advances in the field of pediatric oncology, including new treatment options for progressive cancers, necessitate the early integration of palliative care tenets including holistic care, high-quality communication, and assessment and management of refractory symptoms. RECENT FINDINGS: Research in this emerging field has expanded dramatically over the past several years. This review will focus on advancements within several key areas of the field, specifically regarding investigation of the communication needs and preferences of patients and families, exploration of educational initiatives and interventions to teach PPO principles to clinicians, study of patient-reported and parent-reported tools to better assess and manage refractory symptoms, and development of novel models to integrate palliative care within pediatric oncology. SUMMARY: Research findings in the field of PPO, concurrent with advances in the treatment of pediatric cancer, may help improve survival and quality of life for children with cancer.

Advancing a comprehensive cancer care agenda for children and their families: Institute of Medicine Workshop highlights and next steps.

This article highlights key findings from the "Comprehensive Cancer Care for Children and Their Families" March 2015 joint workshop by the Institute of Medicine (IOM) and the American Cancer Society. This initiative convened more than 100 family members, clinician investigators, advocates, and members of the public to discuss emerging evidence and care models and to determine the next steps for optimizing quality-of-life outcomes and well-being for children and families during pediatric cancer treatment, after treatment completion, and across the life spectrum. Participants affirmed the triple aim of pediatric oncology that strives for every child with cancer to be cured; provides high-quality palliative and psychosocial supportive, restorative, and rehabilitative care to children and families throughout the illness course and survivorship; and assures receipt of high-quality end-of-life care for patients with advancing disease. Workshop outcomes emphasized the need for new pediatric cancer drug development and identified critical opportunities to prioritize palliative care and psychosocial support as an integral part of pediatric cancer research and treatment, including the necessity for adequately resourcing these supportive services to minimize suffering and distress, effectively address quality-of-life needs for children and families at all stages of illness, and mitigate the long-term health risks associated with childhood cancer and its treatment. Next steps include dismantling existing silos and enhancing collaboration between clinical investigators, disease-directed specialists, and supportive care services; expanding the use of patient-reported and parent-reported outcomes; effectively integrating palliative and psychosocial care; and clinical communication skills development. CA Cancer J Clin 2016;66:398-407. © 2016 American Cancer Society.

Pediatric palliative care programs in children's hospitals: a cross-sectional national survey.

BACKGROUND: Pediatric palliative care (PPC) programs facilitate the provision of comprehensive care to seriously ill children. Over the past 10 years many such programs have been initiated by children's hospitals, but little is known about their number, staff composition, services offered, sources of support, or national distribution. METHODS: In the summer of 2012, we surveyed 226 hospitals as identified by the National Association of Children's Hospitals and Related Institutions. The survey instrument gathered data about whether their institution had a PPC program, and for hospitals with programs, it asked for a wide range of information including staffing, patient age range, services provided, and financial support. RESULTS: Of the 162 hospitals that provided data (71.7% response rate), 69% reported having a PPC program. The rate of new program creation peaked in 2008, with 12 new programs created that year, and 10 new programs in 2011. Most programs offer only inpatient services, and most only during the work week. The number of consults per year varied substantially across programs, and was positively associated with hospital bed size and number of funded staff members. PPC programs report a high level of dependence on hospital funding. CONCLUSIONS: PPC programs are becoming common in children's hospitals throughout the United States yet with marked variation in how these programs are staffed, the level of funding for staff effort to provide PPC, and the number of consultations performed annually. Guidelines for PPC team composition, funding, and consultation standards may be warranted to ensure the highest quality of PPC.

Complementary and alternative medicine use in children with cancer at the end of life.

BACKGROUND: The use of complementary and alternative medicines (CAM) in patients with cancer is well recognized. Little is known, however, about the use of CAM in children with cancer during the end-of-life period. METHODS: We interviewed 96 parents of children who had died of cancer in Melbourne, Australia between 1996 and 2004 to establish the prevalence of CAM use during the end-of-life period. Factors affecting the use of CAM were explored. We also determined the perceived efficacy of CAM use and its effect on the overall experience of end-of-life care. RESULTS: Thirty percent of parents caring for a child with cancer reported using some form of CAM during the end-of-life period, with 44% of these families using more than one type. The most common therapies used were organic foods, faith healing, and homeopathy. There was a strong correlation between open discussion about treatment alternatives with the treating physician and parental use of CAM. The majority (78%) of respondents felt CAM use had benefited their child significantly and most felt it had not caused additional suffering. CONCLUSIONS: A significant number of children with cancer are administered CAM during the end-of-life period and most families in our study had found it beneficial. The main focus should continue to be on open and honest communication between caregivers and families in order to provide the best possible holistic care.

Massachusetts' Pediatric Palliative Care Network: successful implementation of a novel state-funded pediatric palliative care program.

BACKGROUND: U.S. children with life-limiting illness face barriers to accessing palliative care. In 2006, Massachusetts signed into law a statute providing for the creation and funding of the Pediatric Palliative Care Network (PPCN). This innovative, exclusively state-funded program provides comprehensive direct and consultative community-based pediatric palliative care services including: (1) pain and symptom management, (2) case management and assessment, (3) social services, counseling, and bereavement services, (4) volunteer support services, (5) respite services, and (6) complementary therapies. Provision of care is through a network of state-licensed hospice programs, and an array of professional and volunteer services. OBJECTIVE: To describe Massachusetts' experience in implementing a novel pediatric palliative care program. DESIGN: Enrollment and service trends were identified using Massachusetts Department of Public Health administrative data. Responses to a written family satisfaction survey provided to each family enrolled on PPCN are summarized. RESULTS: In fiscal year 2010, PPCN partnered with 11 hospice programs to provide services to 227 children with life-limiting illness. A total of $680,850 (86.7%) of state funding went to direct contract funds for hospices. Admitting diagnoses included cancer (30%), chromosomal abnormalities (17%), neurodegenerative disorders (15%), and other (38%). There were 11 deaths, 100% of which occurred in the family's requested location. Median length of stay on service prior to death was 233 days. Families most commonly implemented psychosocial and case management services, followed by complementary therapies, and volunteer services. CONCLUSIONS: Successful implementation of a statewide pediatric palliative care program as modeled in Massachusetts is highly feasible at relatively low cost.

Peace of mind and sense of purpose as core existential issues among parents of children with cancer.

OBJECTIVE: To evaluate issues experienced by parents of children with cancer and factors related to parents' ability to find peace of mind. DESIGN: Cross-sectional survey. SETTING: Dana-Farber Cancer Institute and Children's Hospital, Boston, Massachusetts. PARTICIPANTS: One hundred ninety-four parents of children with cancer (response rate, 70%) in the first year of cancer treatment. MAIN OUTCOME MEASURE: The Functional Assessment of Chronic Illness Therapy-Spiritual Well-being sense of meaning subscale. RESULTS: Principal components analysis of Functional Assessment of Chronic Illness Therapy-Spiritual Well-being sense of meaning subscale responses identified 2 distinct constructs, peace of mind (Cronbach alpha = .83) and sense of purpose (Cronbach alpha = .71). Scores ranged from 1 to 5, with 5 representing the strongest sense of peace or purpose. One hundred forty-seven of 181 parents (81%) scored 4 or higher for questions related to sense of purpose (mean [SD] score, 4.4 [0.6]). Only 44 of 185 parents (24%) had scores in the same range for peace of mind (mean [SD] score, 3.2 [0.9]) (P < .001). In a multivariable logistic regression model, parents had higher peace of mind scores when they also reported that they trusted the oncologist's judgment (odds ratio [OR] = 6.65; 95% confidence interval [CI], 1.47-30.02), that the oncologist had disclosed detailed prognostic information (OR = 2.05; 95% CI, 1.14-3.70), and that the oncologist had provided high-quality information about the cancer (OR = 2.54; 95% CI, 1.11-5.79). Peace of mind was not associated with prognosis (OR = 0.74; 95% CI, 0.41-1.32) or time since diagnosis (OR = 1.00; 95% CI, 0.995-1.003). CONCLUSIONS: Physicians may be able to facilitate formulation of peace of mind by giving parents high-quality medical information, including prognostic information, and facilitating parents' trust.

Caring for children with advanced cancer integrating palliative care.

The care of children with advanced cancer is multifaceted. Treatment should focus on continued efforts to control the underlying illness whenever possible. At the same time, children and their families should have access to interdisciplinary care aimed at promoting optimal physical, psychological and spiritual wellbeing. Open and compassionate communication can best facilitate meeting the goals of these children and families. However, there remain significant barriers to achieving optimal care related to lack of formal education, reimbursement issues and the emotional impact of caring for a dying child. Future research efforts should focus on ways to enhance communication, symptom management and quality of life for children with advanced cancer and their families. As efforts to break down barriers and create the evidence base continue, we conclude as follows: this is a most rewarding part of the practice of medicine. A kind word and caring attitude are remembered for decades.