Pediatric end-of-life care for Taiwanese children who died as a result of cancer from 2001 through 2006.

PURPOSE Patterns of aggressive end-of-life (EOL) care have not been extensively explored in a pediatric cancer population, especially outside Western countries. The purpose of this population-based study was to examine trends in aggressive pediatric EOL cancer care in Taiwan. METHODS Retrospective cohort study that used administrative data among 1,208 pediatric cancer decedents from 2001 through 2006. RESULTS Taiwanese pediatric cancer patients who died in 2001 through 2006 received aggressive EOL care. The majority of these patients in their last month of life continued to receive chemotherapy (52.5%), used intensive care (57.0%), underwent intubation (40.9%), underwent mechanical ventilation (48.2%), or spent greater than 14 days (69.5%) in hospital, and they died in an acute care hospital (78.8%). Of these pediatric cancer patients, one in four received cardiopulmonary resuscitation in the month before they died, and only 7.2% received hospice care. Among those who received hospice care, 21.8% started such care within the last 3 days of life. This pattern of aggressive EOL care did not change over the study period except for significantly decreased intubation in the last month of life. CONCLUSION Continued chemotherapy and heavy use of life-sustaining treatments in the last month of life coupled with lack of hospice care to support Taiwanese pediatric cancer patients dying at home may lead to multiple unplanned health care encounters, prolonged hospitalization at EOL, and eventual death in an acute care hospital for the majority of these patients. Future research should design interventions that enable Taiwanese pediatric cancer patients to receive EOL care that best meets the individual or the parental needs and preferences.

[1]  V. Champion,et al.  End-of-life experiences in adolescents dying with cancer , 2010, Supportive Care in Cancer.

[2]  S. Altekruse,et al.  Outcomes for children and adolescents with cancer: challenges for the twenty-first century. , 2010, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[3]  J. Lave,et al.  Is Survival Better at Hospitals With Higher “End-of-Life” Treatment Intensity? , 2010, Medical care.

[4]  P. Hinds,et al.  "Trying to be a good parent" as defined by interviews with parents who made phase I, terminal care, and resuscitation decisions for their children. , 2009, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[5]  Vinay Nadkarni,et al.  Multicenter cohort study of in-hospital pediatric cardiac arrest* , 2009, Pediatric critical care medicine : a journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies.

[6]  O. Dursun,et al.  Prognostic Factors in Pediatric Cancer Patients Admitted to the Pediatric Intensive Care Unit , 2009, Journal of pediatric hematology/oncology.

[7]  L. Kristjanson,et al.  The supportive and palliative care needs of Australian families of children who die from cancer , 2009, Palliative medicine.

[8]  C. Flahault,et al.  Place of death of adolescents and young adults with cancer: First study in a French population , 2009, Palliative and Supportive Care.

[9]  S. Tang,et al.  Trends in quality of end-of-life care for Taiwanese cancer patients who died in 2000-2006. , 2009, Annals of oncology : official journal of the European Society for Medical Oncology.

[10]  C. Earle,et al.  Comparison of prospective and retrospective indicators of the quality of end-of-life cancer care. , 2008, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[11]  S. Joffe,et al.  Parents' views of cancer-directed therapy for children with no realistic chance for cure. , 2008, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[12]  P. Maciejewski,et al.  Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. , 2008, JAMA.

[13]  M. Blankenburg,et al.  Parents' Perspective on Symptoms, Quality of Life, Characteristics of Death and End-of-Life Decisions for Children Dying from Cancer , 2008, Klinische Padiatrie.

[14]  M. R. Kim,et al.  Aggressiveness of cancer-care near the end-of-life in Korea. , 2008, Japanese journal of clinical oncology.

[15]  S. Rajasekaran,et al.  Changes in outcomes (1996–2004) for pediatric oncology and hematopoietic stem cell transplant patients requiring invasive mechanical ventilation* , 2008, Pediatric critical care medicine : a journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies.

[16]  J. Weeks,et al.  Easing of suffering in children with cancer at the end of life: is care changing? , 2008, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[17]  L. Barbera,et al.  End-of-life care in lung cancer patients in Ontario: aggressiveness of care in the population and a description of hospital admissions. , 2008, Journal of pain and symptom management.

[18]  Kazuki Sato,et al.  Quality of end-of-life treatment for cancer patients in general wards and the palliative care unit at a regional cancer center in Japan: a retrospective chart review , 2008, Supportive Care in Cancer.

[19]  Carol E. Nicholson,et al.  Parents’ perspectives on physician-parent communication near the time of a child’s death in the pediatric intensive care unit* , 2008, Pediatric critical care medicine : a journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies.

[20]  G. Collins,et al.  Place and provision of palliative care for children with progressive cancer: a study by the Paediatric Oncology Nurses' Forum/United Kingdom Children's Cancer Study Group Palliative Care Working Group. , 2007, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[21]  S. Braga,et al.  The aggressiveness of cancer care in the last three months of life: a retrospective single centre analysis , 2007, Psycho-oncology.

[22]  J. Feinstein,et al.  Shifting place of death among children with complex chronic conditions in the United States, 1989-2003. , 2007, JAMA.

[23]  M. Bluebond-Langner,et al.  Understanding parents' approaches to care and treatment of children with cancer when standard therapy has failed. , 2007, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[24]  C. Earle,et al.  Towards using administrative databases to measure population-based indicators of quality of end-of-life care: testing the methodology , 2006, Palliative medicine.

[25]  P. Cleary,et al.  Communication about prognosis between parents and physicians of children with cancer: parent preferences and the impact of prognostic information. , 2006, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[26]  R. Berg,et al.  Outcomes of in-hospital ventricular fibrillation in children. , 2006, The New England journal of medicine.

[27]  G. Steineck,et al.  Home care of a child dying of a malignancy and parental awareness of a child’s impending death , 2006, Palliative medicine.

[28]  Lisa Barbera,et al.  Indicators of Poor Quality End-of-Life Cancer Care in Ontario , 2006, Journal of palliative care.

[29]  M. Lai,et al.  Congruence of Knowledge, Experiences, and Preferences for Disclosure of Diagnosis and Prognosis between Terminally-Ill Cancer Patients and Their Family Caregivers in Taiwan , 2006, Cancer investigation.

[30]  J. Weeks,et al.  Parent and physician perspectives on quality of care at the end of life in children with cancer. , 2005, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[31]  C. Earle,et al.  Evaluating claims-based indicators of the intensity of end-of-life cancer care. , 2005, International journal for quality in health care : journal of the International Society for Quality in Health Care.

[32]  M. Lai,et al.  Discrepancy in the preferences of place of death between terminally ill cancer patients and their primary family caregivers in Taiwan. , 2005, Social science & medicine.

[33]  G. van der Wal,et al.  Medical end-of-life decisions for children in the Netherlands. , 2005, Archives of pediatrics & adolescent medicine.

[34]  C. Wamsler,et al.  Status quo of palliative care in pediatric oncology-a nationwide survey in Germany. , 2005, Journal of pain and symptom management.

[35]  P. Hinds,et al.  Cancer-related deaths in children and adolescents. , 2005, Journal of palliative medicine.

[36]  M. Mcclellan,et al.  Trends in inpatient treatment intensity among Medicare beneficiaries at the end of life. , 2004, Health services research.

[37]  C. Earle,et al.  Trends in the aggressiveness of cancer care near the end of life. , 2004, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[38]  I. Higginson,et al.  Children and young people who die from cancer: epidemiology and place of death in England (1995-9) , 2003, BMJ : British Medical Journal.

[39]  C. Earle,et al.  Identifying potential indicators of the quality of end-of-life cancer care from administrative data. , 2003, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[40]  T. Hongo,et al.  Analysis of the circumstances at the end of life in children with cancer: A single institution's experience in Japan , 2003, Pediatrics international : official journal of the Japan Pediatric Society.

[41]  F. Ruymann,et al.  Variables Influencing End-of-Life Care in Children and Adolescents With Cancer , 2001, Journal of pediatric hematology/oncology.

[42]  E. Emanuel,et al.  Symptoms and suffering at the end of life in children with cancer. , 2000, The New England journal of medicine.

[43]  E. Cook,et al.  Relationship between cancer patients' predictions of prognosis and their treatment preferences. , 1998, JAMA.

[44]  P. Armitage Tests for Linear Trends in Proportions and Frequencies , 1955 .

[45]  J. Weeks,et al.  Looking beyond where children die: determinants and effects of planning a child's location of death. , 2009, Journal of pain and symptom management.

[46]  J. Skinner,et al.  Inpatient care intensity and patients' ratings of their hospital experiences. , 2009, Health affairs.

[47]  P. Hinds,et al.  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. , 2009, Journal of palliative medicine.

[48]  F Nemeth,et al.  End-of-Life , 2019, Encyclopedia of Behavioral Medicine.