In the United States, most children die in hospitals, typically in a critical care
setting [
1
,
2
] About 55,000 children die each year in America, more than half of them in the first
year of life [
[1]
]. Beyond infancy, unintentional injuries, congenital anomalies, malignant neoplasms,
and intentional injuries are the leading causes of death. Although this distribution
of the underlying causes for pediatric deaths has remained relatively stable over
the last 20 years, what is changing, are the events leading to the death of a child.
The success of critical care medicine in the last 25 years has meant that the progression
of many disorders can be forestalled but not permanently reversed. In many instances
families and clinicians must weigh the benefits and burdens of ongoing life-sustaining
treatments. Indeed, the most recent observational studies of death in the pediatric
intensive care unit (PICU) reveals that 40% to 60% of all deaths occur following a
decision to limit life-sustaining therapies [
3
,
4
]. End-of-life care is receiving increased scrutiny from all aspects of our society
and profession [
[5]
]. The recent Institute of Medicine report calls for sweeping improvements to address
current gaps in care [
[1]
]. To address these gaps, several national initiatives are addressing various aspects
of pediatric palliative care. The Initiative for Pediatric Palliative Care (IPPC)
has conducted research, provided technical assistance to children's hospitals developing
new quality improvement initiatives, and completed a comprehensive, interdisciplinary
curriculum [
[6]
].To read this article in full you will need to make a payment
Purchase one-time access:
Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online accessOne-time access price info
- For academic or personal research use, select 'Academic and Personal'
- For corporate R&D use, select 'Corporate R&D Professionals'
Subscribers receive full online access to your subscription and archive of back issues up to and including 2002.
Content published before 2002 is available via pay-per-view purchase only.
Subscribe:
Subscribe to Critical Care ClinicsAlready a print subscriber? Claim online access
Already an online subscriber? Sign in
Register: Create an account
Institutional Access: Sign in to ScienceDirect
References
- When children die: improving palliative and end-of-life care for children and their families. National Academy Press, Washington (DC)2002
- How children die in hospital.J Pain Symptom Manage. 2000; 20: 417-423
- End-of-life care in the pediatric intensive cave unit after the forgoing of life-sustaining treatment.Crit Care Med. 2000; 28: 3060-3066
- Circumstances surrounding end of life in a pediatric intensive care unit.Pediatrics. 2003; 112: e371-e379
- Pediatric palliative care.in: Field M.J Behrman R.E When children die: improving palliative and end-of-life care for children and their families. The National Academy Press, Washington (DC)2003: 19-40
- The initiative for pediatric palliative care curriculum faculty manual. Education Development Center, Inc, Newton (MA)2002 (Available online at www.ippcweb.org))
American Association of Colleges of Nursing (AACN) and the Los Angeles-based City of Hope National Medical Center. The End-of-Life Nursing Education Consortium (ELNEC) project www.aacn.nche.edu/elnec
Solomon M.Z., Sellers D.E., Heller K.S., Dokken D., Levetown M., Rushton C.H., et al. New research in pediatric end-of-life care. Presented at The American Society of Bioethics and Humanities Annual Meeting, Salt Lake City; 2000
- Incorporating palliative care into critical care education: principles, challenges, and opportunities.Crit Care Med. 1999; 27: 2005-2013
- End-of-life care in the intensive care unit: where are we now?.Crit Care Med. 2001; 29: N2-N9
- End-of-life care in the pediatric intensive care unit: attitudes and practices of pediatric critical care physicians and nurses.Crit Care Med. 2001; 29: 658-664
- Parental perspectives on end-of-life care in the pediatric intensive care unit.Crit Care Med. 2002; 30: 226-231
- Recommendations for end-of-life care in the intensive care unit: the Ethics Committee of the Society of Critical Care Medicine.Crit Care Med. 2001; 29: 2332-2348
- Determinants in Canadian health care workers of the decision to withdraw life support from the critically ill. Canadian Critical Care Trials Group.JAMA. 1995; 273: 703-708
- See one, do one, teach one? House staff experience discussing do-not-resuscitate orders.Arch Intern Med. 1996; 156: 1285-1289
- Peaceful death: reccommended comptencies and curricular guidelines for end of life nursing care. (1998) [online].(available at)
- Nurses' knowledge of advance directives.Am J Crit Care. 1998; 7: 218-223
- Foregoing medically provided hydration and nutrition in pediatric patients.J Law Med Ethics. 1995; 23: 33-46
- Guidelines on foregoing life-sustaining medical treatment.Pediatrics. 1994; 93: 532-536
- Doctors' and nurses' perceptions of ethical problems in end of life decisions.J Adv Nurs. 2001; 33: 707-715
- Principles of biomedical ethics. Oxford University Press, New York1994
- Ordering and administration of sedatives and analgesics during the withholding and withdrawal of life support from critically ill patients.JAMA. 1992; 267: 949-953
- Procedures used in withdrawal of mechanical ventilation.Am J Crit Care. 1996; 5: 331-338
- Symptoms and suffering at the end of life in children with cancer.N Engl J Med. 2000; 342: 326-333
- Neonatologists decisions about withholding and withdrawing treatments of critically ill newborns.Pediatrics. 1998; 102: 757
- End of Life in the NICU: a study of ventilator withdrawal.MCN Am J Mater Child Care. 2001; 28: 141-146
- Withdrawing intensive life-sustaining treatment – recommendations for compassionate clinical management.N Engl J Med. 1997; 336: 652-657
Vacco v. Quill 117 S. Ct 2293 (1997)
- The rule of double effect—a critique of its role in end-of-life decision making.N Engl J Med. 1997; 337: 1768-1771
- Physician-assisted suicide in the courts: moral equivalence, double effect, and clinical practice.Minn Law Rev. 1998; 82: 939-963
- Investing or discounting self: are moral decisions shaped by conditions of the workplace?.Adv Pract Q. 1998; 4: 8-13
- The agony of agonal respiration: is the last gasp necessary?.J Med Ethics. 2002; 28: 164-169
- Pharmacologic paralysis and withdrawal of mechanical ventilation at the end of life.N Engl J Med. 2000; 342: 508-511
- Guidelines 2000 for cardiopulmonary resuscitation and emergency cardiovascular care.Circulation. 2000; 102: I86-I89
- A proposed model of health professionals' grieving process.Omega. 2000; 41: 59-77
- Caring for dying children: nurses' experiences.Pediatr Nurs. 1996; 22: 500-507
Rushton C.H., Hutton N., Reder E., Hall B., Sellers D., Commello K. An action plan to reduce caregiver suffering in professionals who care for dying children (Abstract). The Initiative for Pediatric Palliative Care National Symposium, New York; November 7, 2003
- Greek nurse and physician grief as a result of caring for children dying of cancer.Pediatr Nurs. 2002; 28: 345-353
- Pediatric intensive care nurses and their grief experiences: a phenomenological study.Heart Lung. 1997; September/October: 372-386
- The dual process model of coping with bereavement: rationale and description.Death Stud. 1999; 23: 197-225
- Nurses' grief.Cancer Nurs. 1994; 174: 318-325
- Lessons of loss: a guide for coping. McGraw-Hill, New York1998
- Dealing with our losses.J Clin Oncol. 1986; 4: 1127-1134
Meyer E.M., Browning D., Pascucci R.P., Comeau M., Stanley L.J., Burns J.P., et al. Anatomy of a learning team: principles and guidelines to enhance debriefing following communication simulation. Presented at the 4th annual international meeting on medical simulation, Albuquerque/Santa Fe, NM; January 17, 2004
Article info
Identification
Copyright
© 2004 Elsevier Inc. Published by Elsevier Inc. All rights reserved.
