ABSTRACT. Background. Children with complex chronic conditions (CCCs) might benefit from pediatric supportive care services, such as home nursing, palliative care, or hospice, especially those children whose conditions are severe enough to cause death. We do not know, however, the extent of this population or how it is changing over time.Objectives. To identify trends over the past 2 decades in the pattern of deaths attributable to pediatric CCCs, examining counts and rates of CCC-attributed deaths by cause and age (infancy: <1 year old, childhood: 1-9 years old, adolescence or young adulthood: 10 -24 years old) at the time of death, and to determine the average number of children living within the last 6 months of their lives.Design/Methods. We conducted a retrospective cohort study using national death certificate data and census estimates from the National Center for Health Statistics. Participants included all people 0 to 24 years old in the United States from 1979 to 1997. CCCs comprised a broad array of International Classification of Diseases, Ninth Revision codes for cardiac, malignancy, neuromuscular, respiratory, renal, gastrointestinal, immunodeficiency, metabolic, genetic, and other congenital anomalies. Trends of counts and rates were tested using negative binomial regression.Results. Of the 1.75 million deaths that occurred in 0-to 24-year-olds from 1979 to 1997, 5% were attributed to cancer CCCs, 16% to noncancer CCCs, 43% to injuries, and 37% to all other causes of death. Overall, both counts and rates of CCC-attributed deaths have trended downward, with declines more pronounced and statistically significant for noncancer CCCs among infants and children, and for cancer CCCs among children, adolescents, and young adults. In 1997, deaths attributed to all CCCs accounted for 7242 infant deaths, 2835 childhood deaths, and 5109 adolescent deaths. Again, in 1997, the average numbers of children alive who would die because of a CCC within the ensuing 6-month period were 1097 infants, 1414 children, and 2548 adolescents or young adults.Conclusions. C hildren who are dying because of complex chronic conditions (CCCs)-such as cancer, cardiac malformations, cystic fibrosis, or neurodegenerative diseases-require special health care services. These supportive care services range broadly, from aggressive control of pain and effective symptom relief, to sensitive spiritual care and grief counseling, to respite and bereavement services for the family. The importance of providing such comprehensive care has recently been underscored by the American Academy of Pediatrics. 1 Accessing such care can be difficult, however, not only because of reluctance to confront dying openly with children and their families or because of a mismatch between the standard aggressive tertiary pediatric care practices and the philosophy of hospice or palliative care, but also because of a welter of logistic obstacles, such as a shortage of health care personnel trained to provide supportive care, inadequate funding, and constraining in...

PPC teams currently serve a diverse cohort of children and young adults with life-threatening conditions. In contrast to the reported experience of adult-oriented palliative care teams, most PPC patients are alive for more than a year after initiating PPC.

Pediatric palliative care services that focus on effective communication, decision support, and co-case management with insurers can improve aspects of quality of life and family satisfaction.

Purpose Pain, dyspnea, and thirst are three of the most prevalent, intense, and distressing symptoms of intensive care unit (ICU) patients. In this report, the interdisciplinary Advisory Board of the Improving Palliative Care in the ICU(IPAL-ICU) Project brings together expertise in both critical care and palliative care along with current information to address challenges in assessment and management. Methods We conducted a comprehensive review of literature focusing on intensive care and palliative care research related to palliation of pain, dyspnea, and thirst. Results Evidence-based methods to assess pain are the enlarged 0–10 Numeric Rating Scale (NRS) for ICU patients able to self-report and the Critical Care Pain Observation Tool or Behavior Pain Scale for patients who cannot report symptoms verbally or non-verbally. The Respiratory Distress Observation Scale is the only known behavioral scale for assessment of dyspnea, and thirst is evaluated by patient self-report using an 0–10 NRS. Opioids remain the mainstay for pain management, and all available intravenous opioids, when titrated to similar pain intensity end points, are equally effective. Dyspnea is treated (with or without invasive or noninvasive mechanical ventilation) by optimizing the underlying etiological condition, patient positioning and, sometimes, supplemental oxygen. Several oral interventions are recommended to alleviate thirst. Systematized improvement efforts addressing symptom management and assessment can be implemented in ICUs. Conclusions Relief of symptom distress is a key component of critical care for all ICU patients, regardless of condition or prognosis. Evidence-based approaches for assessment and treatment together with well-designed work systems can help ensure comfort and related favorable outcomes for the critically ill.