REFERENCES

AACCN (American Association of Critical-Care Nurses). 2001 (September 8). Written statement to the IOM committee on improving palliative and end-of-life care for children and their families, Washington, DC.

AACN (American Association of Colleges of Nursing). 1998. Peaceful Death: Recommended Competencies and Curricular Guidelines for End-of-Life Nursing Care. [Online]. Available: http://www.aacn.nche.edu/Publications/deathfin.htm [accessed March 31, 2002].

AACN. 2001 (September 24). Statement written by Geraldine Bednash to the IOM committee on improving palliative and end-of-life care for children and their families, Washington, DC.

AACN. 2002. End of Life Nursing Education Consortium. [Online]. Available: http://www.aacn.nche.edu/elnec [accessed March 31, 2002].

AAHPM (American Academy of Hospice and Palliative Medicine). 2000. UNIPACs. [Online]. Available: http://www.aahpm.org/unipac’s.htm [accessed April 18, 2001].

AAHPM. 2001 (September 21). Statement written by Bruce P. Himelstein, Sarah Freiebert, Jeanne Lewandowski, Suzanne Toce, Kate Eastman, Dennis Johnson, and Javier Kane to the IOM committee on improving palliative and end-of-life care for children and their families, Washington, DC.

AAP (American Academy of Pediatrics). 1984. Guidelines for infant bioethics committees. Pediatrics 74(2):306–310.

AAP. 1987. Qualifications and utilization of nursing personnel delivering health services in schools. Pediatrics 79(4):647–648.

AAP. 1991. Guidelines for pediatric cardiology diagnostic and treatment centers. Pediatrics 87(4):576–580. [Online]. Available: http://www.aap.org/policy/03836.html [accessed March 31, 2002].

AAP. 1992. The medical home. Pediatrics 90(5):774.

AAP. 1994a. Death of a child in the emergency department. Pediatrics 93(5):861–862. [Online]. Available: http://www.aap.org/policy/00206.html [accessed December 12, 2001].

AAP. 1994b. Guidelines on forgoing life-sustaining medical treatment. Pediatrics 93(3):532– 536. [Online]. Available: http://www.aap.org/policy/00118.html [accessed December 12, 2001].



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REFERENCES AACCN (American Association of Critical-Care Nurses). 2001 (September 8). Written statement to the IOM committee on improving palliative and end-of-life care for children and their families, Washington, DC. AACN (American Association of Colleges of Nursing). 1998. Peaceful Death: Recommended Competencies and Curricular Guidelines for End-of-Life Nursing Care. [Online]. Available: http://www.aacn.nche.edu/Publications/deathfin.htm [accessed March 31, 2002]. AACN. 2001 (September 24). Statement written by Geraldine Bednash to the IOM committee on improving palliative and end-of-life care for children and their families, Washington, DC. AACN. 2002. End of Life Nursing Education Consortium. [Online]. Available: http://www.aacn.nche.edu/elnec [accessed March 31, 2002]. AAHPM (American Academy of Hospice and Palliative Medicine). 2000. UNIPACs. [Online]. Available: http://www.aahpm.org/unipac’s.htm [accessed April 18, 2001]. AAHPM. 2001 (September 21). Statement written by Bruce P. Himelstein, Sarah Freiebert, Jeanne Lewandowski, Suzanne Toce, Kate Eastman, Dennis Johnson, and Javier Kane to the IOM committee on improving palliative and end-of-life care for children and their families, Washington, DC. AAP (American Academy of Pediatrics). 1984. Guidelines for infant bioethics committees. Pediatrics 74(2):306–310. AAP. 1987. Qualifications and utilization of nursing personnel delivering health services in schools. Pediatrics 79(4):647–648. AAP. 1991. Guidelines for pediatric cardiology diagnostic and treatment centers. Pediatrics 87(4):576–580. [Online]. Available: http://www.aap.org/policy/03836.html [accessed March 31, 2002]. AAP. 1992. The medical home. Pediatrics 90(5):774. AAP. 1994a. Death of a child in the emergency department. Pediatrics 93(5):861–862. [Online]. Available: http://www.aap.org/policy/00206.html [accessed December 12, 2001]. AAP. 1994b. Guidelines on forgoing life-sustaining medical treatment. Pediatrics 93(3):532– 536. [Online]. Available: http://www.aap.org/policy/00118.html [accessed December 12, 2001].

OCR for page 392
AAP. 1995a. Informed consent, parental permission, and assent in pediatric practice. Pediatrics 95(2):314–331. [Online]. Available: http://www.aap.org/policy/00662.html [accessed December 12, 2001]. AAP. 1995b. The Medical Home and Early Intervention: Linking Services for Children With Special Needs. Elk Grove Village, IL: AAP Publications. AAP. 1995c. Perinatal care at the threshold of viability. Pediatrics 96(5):974–976. AAP. 1996. Ethics and the care of critically ill infants and children. Pediatrics98(1):149–152. AAP. 1997a. Alternative routes of drug administration—advantages and disadvantages (subject review). Pediatrics 100(1):143–152. [Online]. Available: http://www.aap.org/policy/970701.html [accessed October 4, 2001]. AAP. 1997b. Guidelines for the Pediatric Cancer Center and Role of Such Centers in Diagnosis and Treatment. Pediatrics 99(1):139–141. AAP. 1997c. Noise: A hazard for the fetus and newborn. Pediatrics 100(4):724–727. [Online]. Available: http://www.aap.org/policy/re9728.html [accessed October 4, 2001]. AAP. 1997d. Religious objections to medical care. Pediatrics 99(2):279–281. [Online]. Available: http://www.aap.org/policy/re9707.html [accessed December 12, 2001]. AAP. 1998a. Issues in the Application of the Resource-Based Relative Value Scale System to Pediatrics: A Subject Review. [Online]. Available: http://www.aap.org/policy/re9818.html [accessed August 13, 2001]. AAP. 1998b. Pediatric workforce statement 1998 (August). Pediatrics 102(2):418–427. [Online]. Available: http://www.aap.org/policy/re9750.html [accessed December 12, 2001]. AAP. 1999a. Disclosure of illness status to children and adolescents with HIV infection. Pediatrics 103(1):164–166. [Online]. Available: http://www.aap.org/policy/re9827.html [accessed December 12, 2001]. AAP. 1999b. Care coordination: Integrating health and related systems of care for children with special health care needs. Pediatrics 104(4):978–981. AAP. 1999c. Investigation and review of unexpected infant and child deaths. Pediatrics 104(5):1158–1160. AAP. 1999d. Medicaid Reimbursement Survey. [Online]. Available: http://www.aap.org/research/medreim.htm [accessed April 19, 2002]. AAP. 2000a. Prevention and management of pain and stress in the neonate. Pediatrics 105(2): 454–461. [Online]. Available: http://www.aap.org/policy/re9945.html [accessed October 4, 2001]. AAP. 2000b. Changing concepts of sudden infant death syndrome: Implications for infant sleeping environment and sleep position. Pediatrics 105(3):650–656. [Online]. Available: http://www.aap.org/policy/re9946.html [accessed December 12, 2001]. AAP. 2000c. Child life services. Pediatrics 106(5):1156–1159. [Online]. Available: http://www.aap.org/policy/re9922.html [accessed December 12, 2001]. AAP. 2000d. Do not resuscitate orders in schools. Pediatrics 105(4):878–879. [Online]. Available: http://www.aap.org/policy/re9842.html [accessed December 12, 2001]. AAP. 2000e. Foregoing life-sustaining medical treatment in abused children. Pediatrics 106(5): 1151–1153. [Online]. Available: http://www.aap.org/policy/re0015.html [accessed December 12, 2001]. AAP. 2000f. Improving Access to Children’s Health Insurance in the United States. [Online]. Available: http://www.aap.org/advocacy/chi2/us.pdf [accessed July 12, 2001]. AAP. 2000g. Palliative care for children. Pediatrics 106(2):351–357. [Online]. Available: http://www.aap.org/policy/re0007.html [accessed December 12, 2001]. AAP. 2000h. Race/ethnicity, gender, socioeconomic status—research exploring their effects on child health: A subject review. Pediatrics 105(6):1349–1351.

OCR for page 392
AAP. 2001a. The assessment and management of acute pain in infants, children, and adolescents. Pediatrics 108(3):793–797. [Online]. Available: http://www.aap.org/policy/9933.html [accessed October 4, 2001]. AAP. 2001b. Care of children in the emergency department: Guidelines for preparedness. Pediatrics 107(4):771–781. AAP. 2001c. Distinguishing sudden infant death syndrome from child abuse fatalities. Pediat-rics 107(2):437–441. [Online]. Available: http://www.aap.org/policy/re0036.html [accessed December 12, 2001]. AAP. 2001d. Institutional ethics committees. Pediatrics 107(1):205–209. [Online]. Available: http://www.aap.org/policy/re0017.html [accessed December 12, 2001]. AAP. 2001e. RVRBS: What Is It and How Does It Affect Pediatrics? Elk Grove Village, IL: AAP. [Online]. Available: http://www.aap.org/visit/pedrbrvs.htm [accessed August 2, 2001]. AAP. 2001f (September 8). Statement presented by G. Kevin Donovan to the IOM committee on improving palliative and end-of-life care for children and their families, Open Meeting. Washington, DC. AAP, Critical Care Section. 2001a (September 8). Letter written by Deborah Mulligan-Smith to the IOM committee on improving palliative and end-of-life care for children and their families, Washington, DC. AAP, Critical Care Section. 2001b (September 8). Statement presented by M. Michele Moss to the IOM committee on improving palliative and end-of-life care for children and their families, Open Meeting. Washington, DC. Abbott KH, Sago JG, Breen CM, Abernathy AP, Tulsky JA. 2001. Families looking back: One year after discussion of withdrawal or withholding of life sustaining support. Critical Care Medicine 29(1):197–201. Abele Meekin S, Klein JE, Fleischman AR, Fins JJ. 2000. Development of a palliative education assessment tool for medical student education. Academic Medicine 75:986–992. ABIM (American Board of Internal Medicine). 1996a. Caring for the Dying: Identification and Promotion of Physician Competency: Educational Research Documents. Philadelphia: ABIM. ABIM. 1996b. Caring for the Dying: Identification and Promotion of Physician Competency: Personal Narratives. Philadelphia: ABIM. ABP (American Board of Pediatrics). 2001 (September 8). Statement presented by Ernest Krug III to the IOM (Institute of Medicine) committee on Children Who Die and Their Families, Open Meeting. Washington, DC. ABP. 2002. [Online]. Available: http://www.abp.org/ABPINFO/abp.htm [accessed March 31, 2002]. ABP, Program Directors Committee. 2001 (September 26). Written statement from Edwin Forman, M.D. to the IOM committee on Children Who Die and Their Families, Washington, DC. Abt Associates, 1991. Reexamination of the Adequacy of Physician Supply Made in 1980 by the Graduate Medical Education National Advisory Committee (GMENAC) for Selected Specialties. Cambridge, MA: Abt Associates, Inc. ACEP (American College of Emergency Physicians). 2001 (September 19). Statement written by Marianne Gausche-Hill and Robert W. Schafermeyer to the IOM committee on improving palliative and end-of-life care for children and their families, Washington, DC. ACGME (Accreditation Council on Graduate Medical Education). 2000 (September 26). [Online]. Available: http://www.acgme.org [accessed March 31, 2002].

OCR for page 392
ACP (American College of Physicians). 1997a. Home Care Guide for Advanced Cancer. PS Houts, ed. Philadelphia: ACP. [Online]. Available: http://www.acponline.org/public/h_care/index.html [accessed August 11, 2001]. ACP (American College of Physicians). 1997b. Home Care Guide for HIV and Aids. PS Houts , ed. Philadelphia: ACP. [Online]. Available: http://www.acponline.org/public/hiv/index.html [accessed August 11, 2001]. ACT (Association for Children with Life-Threatening and Terminal Conditions and Their Families) and the RCPCH (Royal College of Paediatrics and Child Health). 1997. A Guide to the Development of Children’s Palliative Care Services. London: RCPCH. Adams-Greenly, M.1984. Helping children communicate about serious illness and death. Journal of Psychosocial Oncology 2(2):61–72. Addington-Hall JM, Walker L, Jones C, Karlsen S, McCarthy M.1998. A randomised controlled trial of postal versus interviewer administration of a questionnaire measuring satisfaction with and use of services received in the year before death. Journal of Epidemiology and Community Health 52(12):802–807. Aetna Insurance. 2001. Important Consumer Disclosure Information: Texas. [Online]. Available: http://www.aetna.com/data/disclosures/tx_open_access.pdf [accessed March 31, 2002]. AHA (American Heart Association) in Collaboration with the International Liaison Committee on Resuscitation. 2000a. Guidelines 2000 for cardiopulmonary resuscitation and emergency cardiovascular care. Circulation 102(8 Suppl):1–374. AHA. 2000b. Pediatric advanced life support. Circulation 102(Suppl):I-291–I-342. AHCPR (Agency for Health Care Policy and Research [now Agency for Healthcare Research and Quality], U.S. Department of Health and Human Services). 1994 (March). Management of Cancer Pain. Clinical Practice Guideline No. 9. Publication No. 94–0592. Rockville, MD: AHCPR. Ahmann E.1998. Review of commentary: Two studies regarding giving “bad news.”Pediatric Nursing 24(6):554–556. Ahrens WR, Hart RG. 1997. Emergency physicians’ experience with pediatric death. American Journal of Emergency Medicine 15(7):642–643. Ahrens W, Hart R, Maruyama N.1997. Pediatric death: Managing the aftermath in the emergency department. Journal of Emergency Medicine 15(5):601–603. AHRQ (Agency for Healthcare Research and Quality). 2001a. Child Health Toolbox: Measuring Performance in Child Health Programs: Measuring Services for Children with Special Health Care Needs. [Online]. Available: http://www.ahrq.gov/chtoolbx/cshcn.htm [accessed August 17, 2001]. AHRQ, Center for Cost and Financing Studies. 2001b. 2000 Medical Expenditure Panel Survey: Compendium of Tables. Rockville, MD. [Online]. Available: http://www.meps.ahrq.gov/Data_Pub/CompendiumTables/Table1_A2000PIT.PDF [accessed January 31, 2002]. AHRQ. 2001c. Telemedicine for the Medicare population: Pediatric, obstetric, and clinician-indirect home interventions. Evidence Report/Technology Assessment (Summary) No. 24, Supplement:1–32. AHSRHP (Academy for Health Services Research and Health Policy). 2001. States extend coverage in programs in 2000. State of the States Report (Prepared for the Robert Wood Johnson Foundation’s State Coverage Initiatives). Washington, DC: AHSRHP. Pp. 4– 19. Alderson P.1993. Children’s Consent to Surgery. Buckingham, UK: Buckingham Open University Press.

OCR for page 392
All Saints Healthcare System. 1998.A New Employee’s Handout: The Ethical Implications of Providing Religious and Sacramental Services in a Healthcare Environment. Racine, WI. [Online]. Available: http://www.episcopalchurch.org/aehc/resource/ethics/handout.htm [accessed October 1, 2001]. Alpers A, Lo B.1999. Avoiding family feuds: Responding to surrogate demands for life-sustaining interventions. Journal of Law, Medicine, and Ethics 27(1):74–80. Altarescu G, Hill S, Wiggs E, Jeffries N, Kreps C, Parker CC, Brady RO, Barton NW, Schiffmann R.2001. The efficacy of enzyme replacement therapy in patients with chronic neuronopathic Gaucher’s disease. Journal of Pediatrics 138(4):539–547. AMA (American Medical Association), Council on Ethics and Judicial Affairs. 1992. Treatment Decisions for Seriously Ill Newborns: Opinion 2.215. [Online]. Available: http://www.ama-assn.org/ama1/upload/mm/369/43b.pdf [accessed October 22, 2001]. AMA, Council on Ethics and Judicial Affairs. 1994a. Withholding or Withdrawing Life-Sustaining Medical Treatment E-2.20. [Online]. Available: http://www.ama-assn.org/apps/pf_online/pf_online?f_n=browse&doc=policyfiles/CEJA/E-2.20.HTM&&s_t=&st_p=&nth=1&prev_pol=policyfiles/CEJA/E-1.02.HTM&nxt_pol=policyfiles/CEJA/E-2.01.HTM& [accessed March 31, 2002]. AMA, Council on Ethics and Judicial Affairs. 1994b. Ethics Committees in Health Care Institutions E-9.11. Chicago: AMA. AMA, Council on Ethics and Judicial Affairs. 1997. Medical fertility in end-of-life care E-2.037. Code of Medical Ethics. [Online]. Available: http://www.ama-assn.org/ama/pub/category/2503.html [accessed March 31, 2002]. AMA, Council on Ethics and Judicial Affairs. 2001. Principles of Medical Ethics. Chicago: AMA. Amark K, Sunnegardh J.1999. The effect of changing attitudes to Down’s syndrome in the management of complete atrioventricular septal defects. Archives of Diseases in Childhood 81:151–154. Ambuel B, Mazzone MF. 2001. Breaking bad news and discussing death. Primary Care 28(2):249–267. American Heritage Dictionary. 1992. 3rd ed. Boston: Houghton Mifflin Company. American Hospital Association. 2000. Annual Survey Database—Fiscal Year 1998. (CDROM). Chicago: AHA Health Forum. Anand KJ, Barton BA, McIntosh N, Lagercrantz H, Pelausa E, Young TE, Vasa R.1999. Analgesia and sedation in preterm neonates who require ventilatory support: Results from the NOPAIN trial. Neonatal outcome and prolonged analgesia in neonates. Archives of Pediatric Adolescent Medicine 153(4):331–338. Andrews JS, Anderson GF, Han C, Neff JM. 1997. Pediatric carve outs. The use of disease-specific conditions as risk adjusters in capitated payment systems. Archives of Pediatric and Adolescent Medicine 151(3):236–242. Aney C.2001. Written, unpublished responses to survey of bereaved parents developed and distributed by J. Hilden and H. Janes-Hodder for Children’s Oncology Group Parent Advocates Group. Used with permission. Angell M.1985. Cost containment and the physician. Journal of the American Medical Association 254(9):1203–1207. APA (American Psychological Association). 1995. State Medicaid Reimbursement Standards for Psychologists. [Online]. Available: http://www.apa.org/practice/statemedicaid.html [accessed August 17, 2001]. APA. 2001a (February). Resolution on End-of-Life Issues and Care. [Online]. Available: http://www.apa.org/ppo/issues/eolresolu.html [accessed March 31, 2002].

OCR for page 392
APA and Society of Pediatric Psychology. 2001 (September 8). Statement presented by Daniel Armstrong to the IOM committee on improving palliative and end-of-life care for children and their families, Open Meeting. Washington, DC. APHA (American Public Health Association). 2001. Criteria for assessing the quality of health information on the Internet. American Journal of Public Health 91(3):513–514. APS (American Pain Society). 1995. Pediatric Chronic Pain: A Position Statement from the American Pain Society. American Pain Society Bulletin, The Society. [Online]. Available: http://www.ampainsoc.org/advocacy/pediatric.htm [accessed March 31, 2002]. APS. 1997. Treatment of pain at the end of life: A position statement from the American Pain Society. APS Bulletin 7(1). [Online]. Available: http://www.ampainsoc.org/pub/bulletin/jan97/treatment.htm. Aquilino ML, Damiano PC, Willard JC, Momany ET, Levy BT. 1999. Primary care physician perceptions of the nurse practitioner in the 1990s. Archives of Family Medicine 8(3):224– 227. Armstrong-Dailey A, Goltzer SZ, eds. 1993. Hospice Care for Children. New York: Oxford University Press. Armstong-Dailey A, Zarbock S, eds. 2001. Hospice Care for Children. New York: Oxford University Press. Arnold W, Alexander S.1997. Cost, work, reimbursement, and the pediatric nephrologist in the United States Medicare/End-Stage Renal Disease Program. Pediatric Nephrology 11(2):250–257. Asch DA, Hansen-Flaschen J, Lanken PN. 1995. Decisions to limit or continue life-sustaining treatment by critical care physicians in the United States: Conflicts between physicians’ practices and patients’ wishes. American Journal of Respiratory Critical Care Medicine 151(2 Pt 1):288–292. Asch DA, Faber-Langendoen K, Shea JA, Christakis NA. 1999. The sequence of withdrawing life-sustaining treatment from patients. American Journal of Medicine 107(2):153–156. ASCO (American Society for Clinical Oncology). 2002. ASCO Curriculum: Organizing Cancer Care—The Importance of Symptom Management. Alexandria, VA: ASCO. ASIM (American Society for Internal Medicine). 1981 (January). Reimbursement for Physicians’ Cognitive and Procedural Services: A White Paper. Washington, DC: ASIM. ASPH/O (American Society of Pediatric Hematology/Oncology). 2001 (September 18). Statement written by Beverly Lange to the IOM committee on improving palliative and end-of-life care for children and their families, Washington, DC. Aston G. 2001. Mental health parity law nears expiration. American Medical News. 44(27):14. Atkins D, DiGuiseppi CG. 1998. Broadening the evidence base for evidence-based guidelines. A research agenda based on the work of the U.S. Preventive Services Task Force. American Journal of Preventive Medicine 14(4):335–344. Aurora P, Whitehead B, Wade A, Bowyer J, Whitmore P, Rees PG, Tsang VT, Elliott MJ, de Leval M. 1999. Lung transplantation and life extension in children with cystic fibrosis. Lancet 354(9190):1591–1593. Averill RF, Muldoon JH, Ventress JC, Goldfield NI, Mullin RL, Fineran EC, Zhang MZ, Steinbeck B, Grant T. 1998. The evolution of case mix measurement using diagnosis related groups (DRGs). 3M HIS Working Paper. Study performed by 3M Health Information Systems and the National Association of Children’s Hospitals and Related Institutions. [Online]. Available: http://www.3m.com/market/healthcare/his/us/documents/reports/evolcasemix5-98.pdf [accessed August 15, 2001]. Avery GB. 1998. Futility considerations in the neonatal intensive care unit. Seminars in Perinatology 22:216–222.

OCR for page 392
Avila R. 2001 (September 9). Statement and discussion with the IOM committee on improving palliative and end-of-life care for children and their families, Open Meeting. Washington, DC. Avila S. 2001 (September 9). Statement and discussion with the IOM committee on improving palliative and end-of-life care for children and their families, Open Meeting. Washington, DC. Baile WF, Kudelka AP, Beale EA, Glober GA, Myers EG, Greisinger AJ, Bast RC Jr., Goldstein MG, Novack D, Lenzi R.1999. Communication skills training in oncology: Description and preliminary outcomes of workshops on breaking bad news and managing patient reactions to illness. Cancer 86(5):887–897. Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, Kudelka AP. 2000. SPIKES—a six-step protocol for delivering bad news: Application to the patient with cancer. Oncologist 5(4):302–311. Balfour-Lynn IM, Martin I, Whitehead BF, Rees PG, Elliott MJ, deVal MR. 1997. Heart–lung transplantation for patients under 10 with cystic fibrosis. Archives for Disabled Children 76(1):38–40. Ballantyne M, Stevens B, McAllister M, Dionne K, Jack A. 1999. Validation of the premature infant pain profile in the clinical setting. Clinical Journal of Pain 15(4):297–303. Barnard D, Quill T, Hafferty FW, Arnold R, Plumb J, Bulger R, Field M. 1999. Preparing the ground: Contributions for care near the end of life. Working Group on the Pre-clinical Years of the National Consensus Conference on Medical Education for Care Near the End of Life. Academic Medicine 74(5):499–505. Barr RG. 1994. Pain experience in children: Developmental and clinical characteristics. In: Wall PD, Melzack R, eds. Textbook of Pain, 3rd ed. London: Churchill Livingstone. Pp. 739–765. Barrett J, Gifford C, Morey J, Risser D, Salisbury M. 2001. Enhancing patient safety through teamwork training. Journal of Healthcare Risk Management 21(4):57–65. Bartel DA, Engler AJ, Natale JE, Misra V, Lewin AB, Joseph JG. 2000. Working with families of suddenly and critically ill children: Physician experiences. Archives of Pediatric and Adolescent Medicine 154(11):1127–1133. Bartholome WG. 1995. (letter) Informed consent, parental permission, and assent in pediatric practice. Pediatrics 96:981–982. Barzansky B, Veloski JJ, Miller R, Jonas HS. 1999. Education in end-of-life care during medical school and residency training. Academic Medicine 74(10):s102–s104. Bauchner H, Waring C, Vinci R. 1991. Parental presence during procedures in an emergency room: Results from 50 observations. Pediatrics 87(4):544–548. Bayer Institute for Health Care Communication. 2001. PREPARE to be Partners in Your Health Care: Six Steps to Help You Get More Out of Your Doctor’s Visit. [Online]. Available: http://www.bayerinstitute.com/patient/index.htm [accessed May 28, 2002]. Bazelon (Bazelon Center for Mental Health Law). 1999. Medicaid Formulary Policies: Access to High-Cost Mental Health Medications. [Online]. Available: http://www.bazelon.org/formulary.html [accessed July 12, 2001]. BCBSRA (Blue Cross Blue Shield of the Rochester Area). 2002. CompassionateNet: A program for families with children facing a potentially life limiting condition, Rochester, NY. [Online]. Available: http://www.bcbsra.com/members/members_home.htm [accessed April 17, 2002]. Beauchamp TL, Childress JF. 1983. Principles of Biomedical Ethics, 2nd ed. New York: Oxford University Press. Beauchamp TL, Childress JF. 1994. Principles of Biomedical Ethics, 4th ed. Oxford: Oxford University Press.

OCR for page 392
Behrman RE, Kliegman RM, Jenson HB. 2000. Nelson Textbook of Pediatrics, 16th ed. Philadelphia: WB Saunders. Bergsjo P, Villar J. 1997. Scientific basis for the content of routine antenatal care. II. Power to eliminate or alleviate adverse newborn outcomes; some special conditions and examinations. Acta Obstetricia et Gynecologica Scandinavica 76(1):15–25. Berland GK, Elliott MN, Morales LS, Algazy JI, Kravitz RL, Broder MS, Kanouse DE, Munoz JA, Puyol JA, Lara M,Watkins KE, Yang H, McGlynn EA. 2001. Health information on the Internet: Accessibility, quality, and readability in English and Spanish. Journal of the American Medical Association 285(20):2612–2621. Bernstein D. 2000. Epidemiology of congenital heart disease. In: Behrman RE, Kliegman RM, Jenson HB, eds. Nelson Textbook of Pediatrics, 16th ed. Philadelphia: WB Saunders. Pp. 1362–1363. Berwick D. 1989. Continuous quality improvement as an ideal in health care. New England Journal of Medicine 320:53–56. Berwick D, Godfrey AB and Roessner J. 1990. Curing Health Care: New Strategies for Quality Improvement. San Francisco: Jossey-Bass Publishers. Bidari PM. 1996. An incompetent child’s right to have medical treatment terminated when there is uncontroverted evidence that medical assistance is futile. Journal of Juvenile Law 17:1. Billings JA. 1998. What is palliative care? Journal of Palliative Medicine 1:73–83. Billings JA, Block S. 1997. Palliative care in undergraduate medical education: Status report and future directions. Journal of the American Medical Association 278(9):733–738. Blackhall LJ, Murphy ST, Frank G, Michel V, Azen S. 1995. Ethnicity and attitudes toward patient autonomy. Journal of the American Medical Association 274(10):820–825. Blackhall LJ, Murphy ST, Frank G, Michel V, Azen S. 1999. Ethnicity and attitudes towards life sustaining technology. Social Science and Medicine 48(12):1779–1789. Blackhall LJ, Murphy ST, Frank G, Michel V. 2001. Bioethics in a different tongue: The case of truth-telling. Journal of Urban Health 78(1):59–71. Bleyer AW, Tejeda H, Murphy SB, Robison LL, Ross JA, Pollock BH, Severson RK, Brawley OW, Smith MA, Ungerleider RS. 1997. National cancer clinical trials: Children have equal access; adolescents do not. Journal of Adolescent Health 21:366–373. Block S, Billings JA. 1998. Nurturing humanism through teaching palliative care. Academic Medicine 73(7):763–765. BLS (Bureau of Labor Statistics, Department of Labor). 1999. Employee Benefits in Medium and Large Private Establishments, 1997. Bulletin 2517. Washington, DC: BLS. BLS. 2000. Employee Benefits in State and Local Governments, 1998. Bulletin 2531. Blue Cross Blue Shield Association. 2002. 2002 Blue Cross and Blue Shield Service Benefit Plan, p. 63. [Online]. Available: http://www.fepblue.org/pdf/2002sbp.pdf [accessed February 13, 2002]. Bluebond-Langner M. 1978. The Private Worlds of Dying Children. Princeton, NJ: Princeton University Press. Bodenheimer T. 1997. The Oregon Health Plan—lessons for the nation: Second of two parts. New England Journal of Medicine 337(10):720–723. Bookbinder M. 2001. Improving the quality of care across settings. In: Ferrell B, Coyle N, eds. Textbook of Palliative Nursing. Oxford: Oxford University Press. Pp. 503–530. Bookbinder M, Coyle N, Kiss M, Layman Goldstein M, Holritz, Thaler H, Gianella A, Derby S, Brown M, Racolin M, Nah Ho M, Portenoy RK. 1996. Implementing national standards for cancer pain management: Program model and evaluation. Journal of Pain & Symptom Management. 12(6):334–347.

OCR for page 392
Bookbinder, M., Kiss, M., Coyle, N., Brown, M., Gianella, A., Thaler, H. 1995. Improving pain management practices. In: McGuire D, Yarbro C, Ferrell B, eds. Cancer Pain Management, 2nd ed. Boston: Jones and Bartlett. Pp. 321–362. Bowen K, Marshall WN. 1998. Pediatric death certification. Pediatric Adolescent Medicine 152:852–854. Bowman DH. 2001, December 5. Efforts link sick children to classes. The Washington Post. [Online]. Available: http://www.washingtonpost.com/ac2/wp-dyn?pagename=article&node=&contentId=A57677-2001Dec4 [accessed March 16, 2002]. Boyd R. 2000. Witnessed resuscitation by relatives. Resuscitation 43(3):171–176. Breen CM, Abernathy AP, Abbott KH, Tulsky JA. 2001. Conflict associated with decisions to limit life-sustaining treatment in intensive care units. Journal of General Internal Medicine 16(5):283–289. Brennan TA. 1991. Practice guidelines and malpractice litigation: Collision or cohesion? Journal of Health Politics, Policy and Law 16(1):67–85. Briery BG, Rabian B. 1999. Psychosocial changes associated with participation in a pediatric summer camp. Journal of Pediatric Psychology 24(2):183–190. Britton A, Russell R. 2002. Multidisciplinary team interventions for delirium in patients with chronic cognitive impairment (Cochrane Review). In: The Cochrane Library. Oxford: Update Software. [Online]. Available: http://www.cochrane.org/cochrane/revabstr/ab000395.htm [accessed June 5, 2001]. Broaddus M, Ku L. 2000. Nearly 95 Percent of Low-Income Uninsured Children Now Are Eligible for Medicaid or SCHIP . Washington, DC: Center on Budget and Policy Priorities. [Online]. Available: http://www.cbpp.org/12-6-00schip.htm [accessed March 31, 2002]. Brock DW. 1989. Children’s competence for health care decision-making. In: Kopelman LM, Moskop JC, eds. Children and Health Care: Moral and Social Issues. Dordrecht, The Netherlands: Kluwer Academic Publishers. Pp. 181–212. Brocks V, Bang J. 1991. Routine examination by ultrasound for the detection of fetal malformations in a low risk population. Fetal Diagnostic Therapies 6:37–45. Brodeur, D. 1998. Health care institutional ethics: Broader than clinical ethics. In: Monagle J, Thomasma, DC, eds. Health Care Ethics: Critical issues for the 21st Century. Gaithersburg, MD: Aspen. Pp. 497–504. Brody H. 2000. Evidence-based medicine, nutritional support and terminal suffering. American Journal of Medicine 109:740–741. Bromley BE, Blacher J. 1991. Parental reasons for out-of-home placement of children with severe handicaps. Mental Retardation 29(5):275–280. Brosco JP. 1999. The early history of the infant mortality rate in America: A reflection upon the past and a prophecy of the future. Pediatrics 103(2):478–485. Browman GP. 2001. Development and aftercare of clinical guidelines. The balance between rigor and pragmatism. Journal of the American Medical Association 286(12):1509– 1511. Brown KT. 1996. In the Matter of Baby K: The Fourth Circuit stretches EMTALA even further. Mercer Law Review 47:1173–1179. Browning D. In press. Fragments of love: Exploration in the ethnography of suffering and professional caregiving. In: Berzoff J, Silverman P, eds. End-of-Life Care for Social Workers. New York: Columbia University Press. Bruen BK. 2000. Medicaid and Prescription Drugs: An Overview. Prepared for the Kaiser Commission on Medicaid and the Uninsured. Washington, DC: The Urban Institute. Bruen BK. 2002. States Strive to Limit Medicaid Expenditures for Prescribed Drugs. Prepared for the Kaiser Commission on Medicaid and the Uninsured. Washington, DC: The Urban Institute.

OCR for page 392
Bruera E, Neumann CM, Mazzocato C, Stiefel F, Sala R. 2000. Attitudes and beliefs of palliative care physicians regarding communication with terminally ill cancer patients. Palliative Medicine 14(4):287–298. Bryant C. 1993. Role clarification: A quality improvement survey of hospital customers. Journal of Healthcare Quality 15(4):18–20. Budetti PP, Kletke PR, Connelly JP. 1982. Current distribution and trends in the location pattern of pediatricians, family physicians and general practitioners between 1976 and 1979. Pediatrics 70:780–789. Bukowski R. 1999. Cytoprotection in the treatment of pediatric cancer: Review of current strategies in adults and their application to children. Medical and Pediatric Oncology 32(2):124–34. Bula K, Bula J. 2001. Written, unpublished responses to survey of bereaved parent developed and distributed by J. Hilden and H. Janes-Hodder for Children’s Oncology Group Parent Advocates Group. Used with permission. Bull MJ, Jervis LL. 1997. Strategies used by chronically ill older women and their caregiving daughters in managing posthospital care. Journal of Advanced Nursing 25(3):541–547. Buntin MB, Newhouse JP. 1998. Employer Purchasing Coalitions and Medicaid Experience with Risk Adjustment. New York: The Commonwealth Fund. Burck R. 1996. Feeding, withdrawing, and withholding: Ethical perspectives. Nutritional Clinical Practices 11(6):243–253. Burl JB, Bonner A, Rao M. 1994. Demonstration of the cost-effectiveness of a nurse practitioner/physician team in long-term care facilities. HMO Practices 8(4):157–161. Burns JP, Truog RD. 1997. Ethical controversies in pediatric critical care. New Horizons 5(1):72–84. Burns JP, Mitchell C, Outwater KM, Geller M, Griffith JL, Todres ID, Truog RD. 2000. End-of-life care in the pediatric intensive care unit after the forgoing of life-sustaining treatment. Critical Care Medicine 28(8):3060–3066. Burns JP, Mitchell C, Griffith JL, Truog RD. 2001. End-of-life care in the pediatric intensive care unit: Attitudes and practices of pediatric critical care physicians and nurses. Critical Care Medicine 29(3):658–664. Bush JP, Harkins SW, eds. 1991. Children in Pain: Clinical and Research Issues from a Development Perspective. New York: Springer-Verlag. Butler P. 2000. ERISA Complicates State Efforts to Improve Access to Individual Insurance for the Medically High Risk: Issue Brief. [Online]. Available: http://www.academyhealth.org/publications.htm [accessed July 12, 2001]. Butler S, Twohig JS. 2001. New End-of-Life Benefits Models in Blue Cross and Blue Shield Plans. Vienna, VA: Barksdale Ballard and Company. Byock I. 1997. Dying Well: The Prospect for Growth at the End of Life. New York: Riverhead Books. Cacciatore-Garard assisted by Kubler-Ross E. 2001. The power of compassion. Statement submitted to IOM committee on improving palliative and end-of-life care for children and their families, Open Meeting. Washington, DC. Calhoun B, Hoeldke N. 2000. The perinatal hospice: Plowing the field of natal sorrow. Supportive Voices. [Online]. Available: http://www.careofdying.org/Home.html [accessed March 31, 2002]. Callaham M, Madsen CD, Barton CW, Saunders CE, Pointer J. 1992. A randomized trial of high-dose epinephrine and norepinephrine vs standard-dose epinephrine in prehospital cardiac arrest. Journal of the American Medical Association 268:2667–2672. Campbell E, Sanson-Fisher RW. 1998. Breaking bad news. 3: Encouraging the adoption of best practices. Behavioral Medicine 24(2):73–80.

OCR for page 392
Campbell H, Hotchkiss R, Bradshaw N, Porteous M. 1998. Integrated care pathways. British Medical Journal 316:133–137. Campbell SM, Hann M, Hacker J, Burns C, Oliver D, Thapar A, Mead N, Safran DG, Roland MO. 2001. Identifying predictors of high quality care in English general practice: Observational study. British Medical Journal 323(7316):784–787. Candlelighters: Childhood Cancer Foundation. 2001 (September 8). Statement presented by Ruth Hoffman to the IOM committee on improving palliative and end-of-life care for children and their families, Open Meeting. Washington, DC. CAPC (Center to Advance Palliative Care, Mt. Sinai Medical Center [New York City]). No date. Writing a Business Plan. [Online]. Available: http://www.capcmssm.org/topic/4/ [accessed July 20, 2001]. CAPC. No date. [Online]. Available: http://www.capcmssm.org [accessed November 12, 2000]. Caplan AL. 1992. Hard cases make bad law: The legacy of the Baby Doe controversy. In: Caplan AL, Blank RH, Merrick JC, eds. Compelled Compassion: Government Intervention in the Treatment of Critically Ill Newborns. Totowa, NJ: Humana Press. Pp. 105– 122. Capron AM. 2001. Brain death—well settled yet still unresolved. New England Journal of Medicine 344(16):1244–1246. Carrese, JA, Rhodes LA. 2000. Bridging cultural differences in medical practice. The case of discussing negative information with Navajo patients. Journal of General Internal Medicine 15(2):92–96. Carron AT, Lynn J, Keaney P. 1999. End-of-life care in medical textbooks. Annals of Internal Medicine 130(1):82–86. Casarett, DJ, Daskal F, Lantos J. 1998. Experts in ethics? The authority of the clinical ethicist. Hastings Center Report 28(6):6–11. Casarett D, Karlawish JH, Sugarman J. 2000. Should patients in quality-improvement activities have the same protections as participants in research studies? Journal of the American Medical Association 284(14):1786–1788. Cassel CK, Ludden JM, Moon GM. 2000. Perceptions of barriers to high-quality palliative care in hospitals. Health Affairs 19(5):166–172. CDC (Centers for Disease Control and Prevention). 1997. Rates of homicide, suicide and firearm death among children—26 industrialized countries. Morbidity and Mortality Weekly Report 46(5):101–105. [Online]. Available: http://www.cdc.gov/mmwr/PDF/wk/mm4605.pdf [accessed December 13, 2001]. CDC. 1999a. Achievements in public health, 1900–1999: Control of infectious diseases. Morbidity and Mortality Weekly Report. July 30, 1999 / 48(29);621–629. (Also appeared in Journal of the American Medical Association 282(11):1029–1032, 1999.) [Online]. Available: http://www.cdc.gov/mmwr/preview/mmwrhtml/mm4829a1.htm [accessed March 22, 2001]. CDC. 1999b. Achievements in public health, 1900–1999: Healthier mothers and babies. Morbidity and Mortality Weekly Report 48(38)849–858. [Online]. Available: http://www.cdc.gov/epo/mmwr/preview/mmwrhtml/mm4838a2.htm [accessed March 22, 2001]. Centerwall BS. 1995. Race, socioeconomic status, and domestic homicide. Journal of the American Medical Association 273(22):1755–1758. Chaffee S. 2001. Pediatric palliative care. Primary Care: Clinics in Office Practice 28(2):365– 390. Chambers CT, Craig KD. 1999. Commentary—Parents as judges of their children’s pain: Are they accurate? Pediatric Pain Letter 3(2):13–14. [Online]. Available: http://www.pediatric-pain.ca/pplet/v3n2c.PDF [accessed April 15, 2002].

OCR for page 392
Rousar-Thompson P. 2001. Written, unpublished responses to survey of bereaved parent developed and distributed by J. Hilden and H. Janes-Hodder for Children’s Oncology Group Parent Advocates Group. Used with permission. Roy-Byrne PP, Katon W, Cowley DS, Russo J. 2001. A randomized effectiveness trial of collaborative care for patients with panic disorder in primary care. Archives of General Psychiatry 58(6):869–876. Rubenfeld G, Curtis R. 2000. Managing Death in the ICU: The Transition From Cure to Comfort. New York: Oxford University Press. Rubenstein LB, Kahn KL, Reinisch EJ, Sherwood MJ, Rogers WH, Kamberg C, Draper D, Brook RH. 1990. Changes in quality of care for five diseases measured by implicit review, 1981–1986. Journal of the American Medical Association 264(15):1974–1979. Rubin BK, Geiger DW. 1991. Pulmonary function, nutrition, and self-concept in cystic fibrosis summer campers. Chest 100(3):649–654. Rubin SS, Malkinson R. 2001. Parental response to child loss across the life cycle: Clinical and research perspectives. In: Stroebe MS, Hansoon RO, Stroebe W, Schut H, eds. Handbook of Bereavement Research: Consequences, Coping, and Care. Washington, DC: American Psychological Association. Pp. 219–240. Rushton CH. 2001. Pediatric palliative care: Coming of age. In: Solomon MZ, Romer AL, Heller KS, Weissman DE, eds. Innovations in End-of-Life Care: Practical Strategies and International Perspectives, vol. 2. Larchmont, NY: Mary Ann Liebert. Pp. 167–170. Rushton CH. In press. The other side of caring: Caregiver suffering. In: Carter B, Levetown M, eds. Palliative Care for Infants, Children and Adolescents: A Practical Handbook. Baltimore: Johns Hopkins University Press. Rushton CH, Hogue EE. 1993. When parents demand everything. Pediatric Nursing19(2): 180–183. Rushton CH, Will J, Murray M. 1994. To honor and obey: DNR orders and the school. Pediatric Nursing 20(6):581–585. Rushton CH, Terry P. 1995. Neuromuscular blockade and ventilator withdrawal: Ethical controversies. American Journal of Critical Care 4(2):112–115. Rushton CH, Brooks-Brunn JA. 1997. Environments that support ethical practice. New Horizon 5(1):20–29. Rushton CH, Lynch ME. 1992. Dealing with advance directives for critically ill adolescents. Critical Care Nurse 12:31–37. RWJF. 2001 (February). Preparing future nurses and doctors to care for the dying. State Initiatives in End-of Life Care. Sabatino CP. 1999. Survey of state EMS-DNR laws and protocols. Journal of Law, Medicine, and Ethics 27(4):297–315. Sabbagha RE, Sheikh Z, Tamura RK, DalCompo S, Simpson JL, Depp R, Gerbie AB. 1985. Predictive value, sensitivity, and specificity of ultrasonic targeted imaging for fetal anomalies in gravid women at high risk for birth defects. American Journal of Obstetrics & Gynecology 152(7 Pt 1):822–827. Sacchetti A, Lichenstein R, Carraccio CA, Harris RH. 1996. Family member presence during pediatric emergency department procedures.Pediatric Emergency Care 12(4):268–271. Sachdeva RC, LS Jefferson, Coss-Bu J, Brody BA. 1996. Resource consumption and the extent of futile care among patients in a pediatric intensive care unit setting. Journal of Pediatrics 128(6):742–747. Sackett D, Wennberg J. 1997. Choosing the best research design for each question. British Medical Journal 315:1636. Salganicoff A, Keenan PS, Liska D. 1998. Kaiser Commission on Medicaid and the Uninsured, Child Health Facts: National and State Profiles of Coverage. [Online]. Available: http://www.kff.org/content/archive/2105/childfacts.pdf [accessed March 31, 2002].

OCR for page 392
SAM (Society for Adolescent Medicine). 1995. A position statement of the society for adolescent medicine. Journal of Adolescent Health 16:413. Scala MC. 2001. I’m not contagious. We Need Not Walk Alone (newsletter of The Compassionate Friends) 24(2):4–6. Schaefer C, Quesenberry CP Jr, Wi S. 1995. Mortality following conjugal bereavement and the effects of a shared environment. American Journal of Epidemiology 141:1142–1152. Schechter NL, Berde CB, Yaster M, eds. 2002. Pain in Infants, Children and Adolescents,2nd ed. Baltimore: Williams and Wilkins. Schechter NL, Blankson V, Pachter LM, Sullivan CM, Costa L. 1997. The ouchless place: No pain, children’s gain. Pediatrics 99(6):890–894. Schmall VL, Cleland M, Sturdevant M. 2000. The Caregiver Helpbook.Portland: Legacy Caregiver Services. Schmidt TA, Harrahill MA. 1995. Family response to out-of-hospital death. Academic Emergency Medicine 2(6):513–518. Schniederman LJ, Gilmer T, Teetzel HD. 2000. Impact of ethics consultations in the intensive care setting: A randomized, controlled trial . Critical Care Medicine 28(12):3920–3924. Schneiderman LJ, Jecker NS, Jonsen AR. 1990. Medical futility: Its meaning and ethical implications. Annals of Internal Medicine 112(12):949–954. Schut H, Stroebe MS, von den Bout J, Terheggen M. 2001. The efficacy of bereavement interventions: Determining who benefits. In: Stroebe MS, Hansoon RO, Stroebe W, Schut H, eds. Handbook of Bereavement Research: Consequences, Coping, and Care. Washington, DC: American Psychological Association. Pp. 705–737. Schwartz RM, Michelman T, Pezzullo J, Phibbs CS. 1991. Explaining resource consumption among non-normal neonates. Health Care Financing Review 13(2):19–28. Schwartz RS. 2001. Racial profiling in medical research. New England Journal of Medicine 344(18):1392–1393. Schweitzer SO, Mitchell B, Landsverk J, Laparan L. 1993. The costs of a pediatric hospice program. Public Health Report 108(1):37–44. Scott ME. 1998. Play and therapeutic action. Multiple perspectives. Psychoanalytic Study of Children 53:94–101. Seguin JH, Claflin KS, Topper WH. 1993. Impact of a resource-based relative value scale fee schedule on reimbursements to neonatologists. Journal of Perinatology 13(3):217–222. Sell L, Devlin B, Bourke SJ, Munro NC, Corris PA, Gibson GJ. 1993. Communicating the diagnosis of lung cancer. Respiratory Medicine 87:61–63. Sexton PR, Stephen SB. 1991. Postpartum mothers’ perceptions of nursing interventions for perinatal grief. Neonatal Network 9(5):47–51. Shapiro DL, Rosenberg JD. 1984. The effect of federal regulations regarding handicapped newborns: A case report. Journal of the American Medical Association 252:2031–2033. Shapiro L. 2000. Molecular basis of genetic disorders. In: Behrman RE, Kliegman RM, Jenson HB, eds. Nelson Textbook of Pediatrics,16th ed. Philadelphia: WB Saunders. Pp. 313– 317. Shelp EE. 2001. Pastoral care as a community endeavor: A sustaining presence through care team ministry. Park Ridge Center Bulletin. Pp. 7–8. Shelton TL, Jeppson ES, Johnson BH. 1987. Family-Centered Care for Children with Special Health Care Needs. Bethesda, MD: Association for the Care of Children’s Health. Shelton TL, Stepanek JS. 1994. Family-Centered Care for Children Needing Specialized Health and Developmental Services. Bethesda, MD: Association for the Care of Children’s Health. Shepardson LB, Gordon HS, Ibrahim SA, Harper DL, Rosenthal GE. 1999 (January). Racial variation in the use of do-not-resuscitate orders. Journal of General Internal Medicine 14(1):15–20.

OCR for page 392
Sherck JP, Shatney CH. 1996. ICU scoring systems do not allow prediction of patient outcomes or comparison of ICU performance. Critical Care Clinics 12(3):515–523. SHHV/SBC (Society for Health and Human Values/Society for Bioethics Consultation Task Force on Standards for Bioethics Consultation). 1998. Core Competencies for Health Care Ethics Consultation. Glenview, IL: American Society for Bioethics and Humanities. Shortell SM, Zimmerman JE, Rousseau DM, Gillies RR, Wagner DP, Draper EA, Knaus WA, Duffy J. 1994. The performance of intensive care units: Does good management make a difference? Medical Care32(5):508–525. Shortell SM, Bennett CL, Byck GR. 1998. Assessing the impact of continuous quality improvement on clinical practice: What it will take to accelerate progress. Milbank Quarterly 76(4):593–624. Shuster E. 1997. Fifty years later: The significance of the Nuremberg Code. New England Journal of Medicine 337(20):1436–1440. Sibling Connection. 2000. Anniversary Reactions: Jonathan. [Online]. Available: http://www.counselingstlouis.net/page5.html [accessed March 31, 2002]. Sibling Corner. 2001. I still remember the day. [Online]. Available: http://www.portlandtcf.org/NL112001_4.html [accessed March 31, 2002]. SIDS Alliance. 2001 (September 8). Statement presented by Deborah Boyd to the IOM committee on improving palliative and end-of-life care for children and their families, Open Meeting. Washington, DC. Silberberg M. 2001. Respite Care: State Policy Trends and Model Programs. [Online]. Available: http://www.caregiver.org/national_center/exec_sum_2001_04.html [accessed March 31, 2002]. Silverman PR. 2000.Never Too Young To Know: Death in Children’s Lives. Oxford: Oxford University Press. Silverman WA. 1982. A hospice setting for humane neonatal death. Pediatrics69:239–240. Sine D, Sumner L, Gracy D, von Gunten CF. 2001. Pediatric extubation: “Pulling the tube.” Journal of Palliative Medicine 4(4):519–524. Singh GK, Yu SM. 1995. Infant mortality in the United States: Trends, differentials, and projections, 1950 through 2010. American Journal of Public Health 85(7):957–964. Skeels JF. 1990. The right of mature minors in Illinois to refuse life-saving medical treatment. Loyola Chicago Law Journal 21:1199. Skelton JR, Macleod JAA, Thomas CP. 2001. Teaching literature and medicine to medical students, part II: Why literature and medicine? Lancet 356:2001–2003. Smith DG, Wigton RS. 1987. Modeling decisions to use tube feeding in seriously ill patients. Archive of Internal Medicine 147(7):1242–1245. Smith G, O’Keeffe J, Carpenter L, Doty P, Kennedy G, Burwell B, Mollica R, Williams L. 2000. Introduction. Understanding Medicaid Home and Community Services: A Primer. [Online]. Available: http://aspe.hhs.gov/daltcp/reports/primerpt.htm#Chap1 [accessed March 20, 2002]. Smith T, Rees H. Making FamilyCentered Care A Reality. [Online]. Available: http://www.momentix.com/downloads/references/manual/5491/Aterrell%20fcc.pdf [accessed December 31, 2001]. Smithson R. No date. Stories: Men and the health care delivery system. The fathers network. [Online]. Available: http://www.fathersnetwork.org/554.html. Smits H, Furletti M and Vladeck B.2002 (February). Palliative Care: An Opportunity for Medicare. New York City: Institute for Medicare Practice, Mount Sinai School of Medicine. [Online]. Available: http://www.mssm.edu/instituteformedicare/pdfs/palliative_care_0202.pdf [accessed June 14, 2002]. Soderstrom L, Martinson I. 1987. Patients’ spiritual coping strategies: A study of nurse and patient perspectives. Oncology Nursing Forum14(2):41.

OCR for page 392
Solomon MZ. 1993. How physicians talk about futility: Making words mean too many things. Journal of Law, Medicine, and Ethics 21(2):231–237. Solomon MZ. 2001. Institutional accountability in end-of-life care. In: Solomon MZ, Heller KS, Romer AL, eds. Innovations in End-of-Life Care: Practical Strategies and International Perspectives, vol. 2. Larchmont, NY: Mary Ann Liebert, Inc. Pp. 137–142. Solomon, MZ. In press. Research to improve end-of-life care in the United States: Toward a more behavioral and ecological paradigm. In: Portenoy R, Bruera E, eds. Issues in Palliative Care Research. New York: Oxford University Press. Solomon MZ, Guilfoy V, O’Donnell L, Jackson R, Jennings B, Wolf S, Nolan K, Donnelley S, Koch-Weser D. 1997. Faculty Guide: Decisions Near the End of Life. Revised by Solomon MZ, Fins JJ, Crigger B, Heller KS. Newton, MA: Education Development Center, Inc. [Online]. Available: http://www.edc.org/CAE [accessed July 9, 2002]. Solomon, MZ, Romer AL, Heller KS. 2000b. Innovations in End-of-Life Care: Practical Strategies and International Perspectives, vol. 1. Larchmont, NY: Mary Ann Liebert, Inc. Solomon MZ, Sellers DE, Heller KS, Dokken D, Levetown M, Rushton C, Truog R, Fleischman A. 2000c (October). New research in pediatric end-of-life care. Presented at The American Society of Bioethics and Humanities Annual Meeting, Salt Lake City. Solomon MZ, Dokken D, Fleischman A, Heller KS, Levetown M, Rushton CH; Sellers D, Truog, R [for the Initiative for Pediatric Palliative Care (IPPC)]. 2001a. Enhancing Family-Centered Care for Children With Life-Threatening Conditions: Background and Goals . Newton, MA: Education Development Center. [Online]. Available: http://www.pediatricpalliativecare.org [accessed March 31, 2002]. Solomon MZ, Romer AL, Heller KS, Weissman DE. 2001b. Innovations in End-of-Life Care: Practical Strategies and International Perspectives Volume 2. Larchmont, NY: Mary Ann Liebert, Inc. Solomon MZ, Dokken DL, Fleischman AR, Heller K, Levetown M, Rushton CH, Sellers DE, Truog RD [for the IPPC]. 2002. The initiative for pediatric palliative care (IPPC): Background and goals. Newton, MA: Education Development Center, Inc. [Online]. Available: www.ippcweb.org [accessed June 20, 2002]. Sommer D. 2001 (September 8). Statement presented on behalf of the Pediatric Chaplains Network to the IOM committee on Care of Children Who Die and Their Families, Open Meeting. Washington, DC. Sourkes, B. 1980. Siblings of the Pediatric Cancer Patient. In: Kellerman J. ed. Psychological Aspects of Childhood Cancer.Springfield, IL: Charles C. Thomas. Pp. 47–69. Sourkes B. l982. The Deepening Shade: Psychological Aspects of Life-Threatening Illness. Pittsburgh: University of Pittsburgh Press. Sourkes B. 1995a. Armfuls of Time: The Psychological Experience of the Child with a Life-Threatening Illness. Pittsburgh: University of Pittsburgh Press. Sourkes, B. 1995b. A Life of My Own: The Adolescent’s Psychological Experience of Life-threatening Illness. Fifth annual Ruth A. Succop Lecture, Children’s Hospital of Pittsburgh and University of Pittsburgh. Sowards KA. 1999. What is the leading cause of infant mortality? A note on the interpretation of official statistics. American Journal of Public Health 89(11):1752–1754. Speck PW. 1998. Spiritual issues in palliative care. In: Doyle D, Hanks GWC, MacDonald N, eds. Oxford Textbook of Palliative Medicine. Oxford: Oxford University Press. Pp. 515–525. Spiro H. 1992. What is empathy and can it be taught?Annals of Internal Medicine116:843– 846.

OCR for page 392
Spragens LH, Wenneker M. 2001 (July). Creating a Compelling Business Case for Palliative Care. Presentation at Center to Advance Palliative Care Seminar, Oakland, CA. The Bard Group, LLC. [Online]. Available: http://www.capcmssm.org/content/42/index.html?topic=3 [accessed July 20, 2001]. Stahlman MT. 1990. Ethical issues in the nursery: Priorities versus limits. Journal of Pediatrics116:167–170. Stanfield J. 2000. Faith, healing and religious treatment exemptions to child-endangerment laws: Should parents be allowed to refuse necessary medical treatment for their children based on their religious beliefs? Hamline Journal of Public Law & Policy 22:45. Stanford Faculty Development Center. 2002. The End of Life Care Program. [Online]. Available: http://www.stanford.edu/group/SFDP/progeol.html [accessed March 15, 2002]. Stanley BH, Sieber JE eds. 1992. Social Research on Children and Adolescents: Ethical Issues. Sage Focus Editions. Newbury Park, CA: Sage Publications. Starren J, Hripcsak G, Sengupta S, Abbruscato CR, Knudson PE, Weinstock RS, Shea S. 2002. Columbia University’s informatics for diabetes education and telemedicine (IDEATel) Project. Journal of the American Medical Information Association.9:25–36. State MW, King BH, Dykens E. 1997. Mental retardation: A review of the past 10 years. Part II. Journal of the American Academy of Child & Adolescent Psychiatry. 36(12):1664– 1671. Stedman’s Medical Dictionary, 26th edition. 1995. Baltimore: William and Wilkins. Steinberg A. 1998. Decision-making and the role of surrogacy in withdrawal or withholding of therapy in neonates. Clinical Perinatology 25(3):779–790. Stepanek MTJ. 2001. Heartsongs.Alexandria, VA: VSP and Hyperion Books. Stepp LS. 2002, January 2. Adolescence: Not just for kids. By some definitions, it ends at 34. Aren’t we stretching it just a bit? Washington Post, p. C01 Stevens B, Yamada J, Ohlsson A. 2001. Sucrose for Analgesia in Newborn Infants Undergoing Painful Procedures. [Online]. Available: http://www.nichd.nih.gov/cochrane/Stevens/Stevens.HTM [accessed March 10, 2002]. Stevens MM. 1998. Psychological adaptation of the dying child. In: Doyle D, Hanks GWC, MacDonald N, eds. Oxford Textbook of Palliative Medicine, 2nd ed.Oxford: Oxford University Press. Pp. 1045–1055. Stevens MM, Jones P, O’Riordan E. 1996. Family responses when a child with cancer is in palliative care. Journal of Palliative Care 12(3):51–55. Stiller CA. 1988. Centralisation of treatment and survival rates for cancer. Archives of Disease in Childhood 63(1):23–30. Stoll BJ, Kliegman RM. 2000a. Overview of morbidity and mortality. In: Behrman RE, Kliegman RM, Jenson HB, eds. Nelson Textbook of Pediatrics,16th ed.Philadelphia: WB Saunders. Pp. 451–454. Stoll BJ, Kliegman RM. 2000b. The high-risk infant. In: Behrman RE, Kliegman RM, Jenson HB, eds. Nelson Textbook of Pediatrics,16th ed. Philadelphia: WB Saunders. Pp. 474– 486. Stone P, Phillips C, Spruyt O, Waight C. 1997. A comparison of the use of sedatives in a hospital support team and in a hospice.Palliative Medicine 11:140–144. Strauss D, Eyman RK, Grossman HJ. 1996. Predictors of mortality in children with severe mental retardation: The effect of placement. American Journal of Public Health 86(10): 1422–1429. Strauss D, Kastner TA. 1996. Comparative mortality of people with mental retardation in institutions and the community. American Journal of Mental Retardation 101(1):26–40. Strauss D, Kastner T, Ashwal S, White J. 1997. Tubefeeding and mortality in children with severe disabilities and mental retardation. Pediatrics 99(3):358–362.

OCR for page 392
Stroebe MS, Stroebe W, Hansson R, eds. 1993. Handbook of Bereavement: Theory, Research, and Intervention. New York: Cambridge University Press. Stroebe MS, Hansoon RO, Stroebe W, Schut H, eds. 2001a. Handbook of Bereavement Research: Consequences, Coping, and Care. Washington, DC: American Psychological Association. Stroebe MS, Hansson RO, Stroebe W, Schut H. 2001b. Future directions for bereavement research. In: Stroebe MS, Hansoon RO, Stroebe W, Schut H, eds. Handbook of Bereavement Research: Consequences, Coping, and Care. Washington, DC: American Psychological Association. Pp. 741–766. Stroebe MS, Schut H. 2001c. Models of coping with bereavement: A review. In: Stroebe MS, Hansoon RO, Stroebe W, Schut H, eds. Handbook of Bereavement Research: Consequences, Coping, and Care. Washington, DC: American Psychological Association. Pp. 375–403. Stroul BA, Pires SA, Armstrong MI, Meyers JC. 1998. The impact of managed care on mental health services for children and their families. Future Child 8(2):119–133. Strunk BC, Cunningham PJ. 2002 (March). Treading Water: Americans’ Access to Needed Medical Care, 1997–2001. Tracking Report No. 1. Washington, DC: Center for Studying Health System Change. Stuber M. 1992. Psychotherapy issues in pediatric HIV and AIDS. In: Stuber M, ed. Children and AIDS. Washington, DC: American Psychiatric Press. Sullivan MC. 2001. Lost in translation: How Latinos view end-of-life care. Last Acts Electronic Newsletter. [Online]. Available: http://www.lastacts.org [accessed February 22, 2001]. Sulmasy DP. 1992. Physicians, cost control, and ethics. Annals of Internal Medicine116(11): 920–926. Sulmasy DP. 1995. Managed care and managed death. Archives of Internal Medicine155: 133–136. Sulmasy DP. 2000. Commentary: Double effect—intention is the solution, not the problem. Journal of Law, Medicine, and Ethics 28(1):26–29. Sulmasy DP, Dwyer M, Marx E. 1995. Knowledge, confidence, and attitudes regarding medical ethics: How do faculty and housestaff compare. Academic Medicine 70(11):1038– 1040. Sulmasy DP, Geller G, Levine DM, Faden R. 1993. A randomized trial of ethics education for medical house officers. Journal of Medical Ethics 19(3):157–163. Sumner L. 2001. Pediatric care: The hospice perspective. In: Ferrell BR, Coyle N, eds. Textbook of Palliative Nursing. New York: Oxford University Press. Pp. 556–569. Support Organization for Trisomy 13/18 and Related Disorders. 2001 (September 8). Statement presented by Kenneth McWha to the IOM committee on improving palliative and end-of-life care for children and their families, Open Meeting. Washington, DC. SUPPORT Principle Investigators. 1995. The study to understand prognoses and preferences for outcomes and risks of treatment. Journal of the American Medical Association 274(20):1591–1598. Swarm RA, Cousins MJ. 1998. Anaesthetic techniques for pain control. In: Doyle D, Hanks GWC, MacDonald N, eds. Oxford Textbook of Pallative Medicine,2nd ed.Oxford: Oxford University Press. Pp. 390–413. Taddio A, Ohlson A. 1997.Lidocaine–Prilocaine Cream (EMLA) to Reduce Pain in Male Neonates Undergoing Circumcision. [Online]. Available: http://www.nichd.nih.gov/cochrane/Taddio/Taddio1.htm [accessed March 10, 2002]. Tang S, Yudkowsky BK, Siston AM. 2000. Children’s Health Insurance Status and Public Program Participation: State Reports, 1999 and 2001 Estimates. Elk Grove Village, IL: Division of Health Policy Research, AAP.

OCR for page 392
Teddell JS, Litwin SB, Berger S. 1996. Twenty-year experience with repair of complete atrioventricular septal defects. Annals of Thoracic Surgery 62:419–424. Teno JM, Neylan Okun S, Casey V, Welch LC. 2001. Toolkit of Instruments to Measure End of Life Care (TIME)—Resource Guide: Achieving Quality of Care at Life’s End. [Online]. Available: http://www.chcr.brown.edu/pcoc/resourceguide/resourceguide.pdf [accessed March 31, 2002]. Thayer P. 2001. Spiritual care of children and parents. In: Armstrong-Daley A, Zarbock S, eds. Hospice Care for Children, 2nd ed. Oxford: Oxford University Press. Pp. 172–189. Thibault GE. 1994. The use of clinical models for end of life decision making in critically ill ICU patients. In: Field MJ, ed. Summary of Committee Views and Workshop Examining the Feasibility of an Institute of Medicine Study of Dying, Decisionmaking, and Appropriate Care. IOM Committee for a Feasibility Study on Care at the End of Life. Washington, DC: Institute of Medicine. Thibault GE. 1997. Prognosis and clinical predictive models for critically ill patients. In: Field MJ, Cassel CK, eds. Approaching Death: Improving Care at the End of Life. Washington, DC: National Academy Press. Pp. 358–362. Thornes, R. (on behalf of the Joint Working Party on Palliative Care for Adolescents and Young Adults). 2001. Palliative care for young people aged 13–24. [Online]. Available: http://www.act.org.uk/pages/viewpointasp?Active=F3. Thorns A, Sykes N. 2000. Opioid use in last week of life and implications for end-of-life decision-making. Lancet 356(9227):398–399. Tilly J, Wiener JM. 2001. State pharmaceutical programs for older and disabled Americans. Health Affairs 20(5):223–232. Timmermans S. 1997. High touch in high tech: The presence of relatives and friends during resuscitative efforts. Scholarly Inquiry for Nursing Practice 11(2):153–168; discussion 169–173. Tobin DR, Lindsey K. 1998. Peaceful Dying: The Step-by-Step Guide to Preserving Your Dignity, Your Choice, and Your Inner Peace at the End of Life. Reading, MA: Perseus Books. Tolle SW, Tilden VP. 2002. Changing end-of-life planning: The Oregon experience. Journal of Palliative Medicine 5(2):311–317. Tolle SW, Tilden VP, Nelson CA, Dunn PM. 1998. A prospective study of the efficacy of the physician order form for life-sustaining treatment. Journal of the American Geriatrics Society 46:1–6. Tommiska V, Heinonen K, Ikonen S, Keroll P, Pokela M, Renlund M, Virtanen M, Fellman V. 2001. A national short-term follow-up of extremely low birth weight infants born in Finland in 1996–1997. Pediatrics 107(1):e2. [Online]. Available: http://www.mindfully.org/Health/Low-Birth-Weight.htm [accessed September 27, 2001]. Trafford A. 2001 (June 20). Children of denial: Recent advances in end-of-life care haven’t reached the youngest patients. Washington Post, p. A01. Traugott I, Alpers A. 1997. In their own hands: Adolescents’ refusal of medical treatment. Archive of Pediatrics & Adolescent Medicine 151:922–927. Truog RD. 2000. Addressing ethical conflicts in the ICU. Forum, August 2000. [Online]. Available: http://www.rmf.harvard.edu/publications/forum/v20n4/fv20n4-a3/index.html [accessed October 22, 2001]. Truog RD, Brett AS, Frader J. 1992. The problem with futility. New England Journal of Medicine 326:1560–1564. Truog RD, Burns JP, Mitchell C, Johnson J, Robinson W. 2000. Pharmacologic paralysis and withdrawal of mechanical ventilation at the end of life. New England Journal of Medicine 342:508–511.

OCR for page 392
Truog RD, Cist AF, Brackett SE, Burns JP, Curley MA, Danis M, DeVita MA, Rosenbaum SH, Rothenberg DM, Sprung CL, Webb SA, Wlody GS, Hurford WE. 2001. Recommendations for end-of-life care in the intensive care unit: The Ethics Committee of the Society of Critical Care Medicine. Critical Care Medicine 29(12):2332–2348. Tsai E. 2002. Should family members be present during cardiopulmonary resuscitation?New England Journal of Medicine 346(13):1019–1021. Tucson (Arizona) Unified School District. 1996. Emergency Life-Sustaining Care for Students: Board Policy 5527. Governing Board Policies Series 5000. Adopted September 3, 1996. [Online]. Available: http://www.tusd.k12.az.us/contents/govboard/gbpol5000/pol5527.html [accessed April 16, 2002]. Tulsky JA, Chesney MA, Lo B. 1996. See one, do one, teach one? House staff experience discussing do-not-resuscitate orders. Archives of Internal Medicine 156(12):1285–1289. Twycross R, Lichter I. 1998. The terminal phase. In: Doyle D, Hanks GWC, MacDonald N, eds. Oxford Textbook of Pallative Medicine, 2nd ed. Oxford: Oxford University Press. Pp. 977–994. Ubel P, Goold S. 1997. Recognizing bedside rationing: Clear cases and tough calls. Annals of Internal Medicine 126:74–80. U.S. Census Bureau. 2001. Resident population estimates by age and sex, April 1, 1990, to July 1, 1999. [Online]. Available: http://eire.census.gov/popest/archives/national/nation2/intfile2-1.txt [accessed March 31, 2002]. USDHEW (U.S. Department of Health and Human Services). 1977. Research Involving Children: Report and Recommendations. Washington, DC: The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. USDHHS (U.S. Department of Health and Human Services). 1993. Institutional Review Board Guidebook, Chapter 6, Special Classes of Subjects, Section C, Children. Washington, DC: Office of Human Research Protections. [Online]. Available: http://ohrp.osophs.dhhs.gov/irb/irb_chapter6.htm#g4 [accessed December 17, 2001]. USGAO (U.S. General Accounting Office). 2001a (September). Medicaid and SCHIP: States’ Enrollment and Payment Policies Can Affect Children’s Access to Care. GAO-01-883. Washington, DC: USGAO. USGAO. 2001b. Testimony Before the Committee on Health, Education, Labor and Pensions, U.S. Senate: Pediatric Drug Research: Substantial Increase in Studies of Drugs for Children, but Some Challenges Remain. Statement of Janet Heinrich, Director, Health Care–Public Health Issues, May 8, 2001. GAO-01-705T. Vachon, M. 1976. Stress reactions to bereavement. Essence1:23. Vaidya VU, Greenberg LW, Patel KM, Strauss LH, Pollack MM. 1999. Teaching physicians how to break bad news: A 1-day workshop using standardized parents. Archive of Pediatric Adolescent Medicine 153(4): 419–422. Van Eys J, E. Mohnke, eds. 1985. Life, faith, hope and magic: The chaplaincy in pediatric cancer care.Houston, TX: University of Houston. Vazirani RM, Slavin SJ, Feldman JD. 2000. Longitudinal study of pediatric house officers’ attitudes toward death and dying. Critical Care Medicine 28(11):3740–3745. Vernon DD, Dean JM, Timmons OD, Banner W Jr, Allen-Webb EM. 1993. Modes of death in the pediatric intensive care unit: Withdrawal and limitation of supportive care. Critical Care Medicine 21(11):1798–1802. Vertrees JC, Pollatsek JS. 1993. Paying for pediatric inpatient care. Final report of the Universal Access for Children Reimbursement Study Project, conducted for NACHRI. Alexandria, VA: Solon Consulting Group Ltd. Vetto JT, Elder NC, Toffler WL, Fields SA. 1999. Teaching medical students to give bad news: Does formal instruction help? Journal of Cancer Education 14(1):13–17.

OCR for page 392
Vintzileos AM. Egan JF. 1995. Adjusting the risk for trisomy 21 on the basis of second-trimester ultrasonography. American Journal of Obstetrics & Gynecology 172(3):837– 844. Vizza CD, Yusen RD, Lynch JP, Fedele F, Patterson GA, Trulock EP. 2000. Outcome of patients with cystic fibrosis awaiting lung transplantation. American Journal of Respiratory Critical Care Medicine 162(3 Pt 1):819–825. von Gunten CF. 2000. Palliative care and home hospice program, Northwestern Memorial Hospital. In Programs in Palliative Care: Nine Case Studies.New York: Milbank Memorial Fund and Robert Wood Johnson Foundation. Pp. 161–182 [Online]. Available: http://www.milbank.org/pppc/0011pppc.html [accessed March 31, 2002]. von Gunten CF. 2001. Discussing do-not-resuscitate status. Journal of Clinical Oncology 19(5):1576–1581. Wagner HP, Dingeldein-Bettler I, Berchthold W, Luthy AR, Hirt A, Pluss HJ, Beck D, Wyss M, Signer E, Imbach P. 1995. Childhood NHL in Switzerland: Incidence and survival of 120 study and 42 non-study patients. Medical and Pediatric Oncology 24(5):281–286. Waisel DB, Truog RD. 1995. The cardiopulmonary resuscitation-not-indicated order: Futility revisited. Annals of Internal Medicine 122(4):304–308 Walco GA, Cassidy RC, Schechter NL.1994. Pain, hurt, and harm—the ethics of pain control in infants and children. New England Journal of Medicine 331(8):541–544. Walco GA, Sterling CM, Conte PM, Engel RG. 1999. Empirically supported treatments in pediatric psychology: Disease-related pain. Journal of Pediatric Psychology 24(2):155– 167. Wall SN, Partridge JC. 1997. Death in the intensive care nursery: Physician practice of withdrawing and withholding life support. Pediatrics 99(1):64–70. Wallston KA, Burger C, Smith RA, Baugher RJ. 1988. Comparing the quality of death for hospice and non-hospice cancer patients. Medical Care 26(2):177–182. Walsh, RA, Girgis A, Sanson-Fisher RW. 1998. Breaking bad news 2: What evidence is available to guide clinicians? Behavioral Medicine 24(2):61–72. Warady BA, Carr B, Hellerstein S, Alon U. 1992. Residential summer camp for children with end-stage renal disease. Child Nephrology & Urology 12(4):212–215. Washburne, CK. 2000. Zink the Zebra: Teaching the Acceptance of Our Differences. [Online]. Available: http://www.zinkthezebra.org/ [accessed March 31, 2002]. Wass H. 1984. Concepts of death: A developmental perspective. In: Wass H, Corr CA, eds. Childhood and Death.Washington, DC: Hemisphere Publishing. Wear D. 2002. Face-to-face with it: Medical students’ narratives about their end-of-life education. Academic Medicine 77:271–277. Webb M. 1997. The Good Death: The New American Search to Reshape the End of Life. New York: Bantam Books. Weeks JC, Cook EF, O’Day SJ, Peterson LM, Wenger N, Reding D, Harrell FE, Kussin P, Dawson NV, Connors AF Jr, Lynn J, Phillips RS. 1998. Relationship between cancer patients’ predictions of prognosis and their treatment preferences.Journal of the American Medical Association 279(21):1709–1714. Weil K. 1996. Zink the Zebra.Milwaukee: Gareth Stevens Publishing. Weil L. 2001 (September 9). Statement and discussion with the IOM committee on improving palliative and end-of-life care for children and their families, Open Meeting. Washington, DC. Weir RF. 1983. The government and selective nontreatment of handicapped infants. New England Journal of Medicine 309:661–663. Weir RF. 1992. Selective Nontreatment of Handicapped Newborns: Moral Dilemmas in Neonatal Medicine. New York: Oxford University Press.

OCR for page 392
Weisman SJ, Bernstein B, Schechter NL. 1998. Consequences of inadequate analgesia during painful procedures in children . Archives of Pediatric Adolescent Medicine 152(2):147– 149. Weissman DE, Block SD. 2002. ACGME requirements for end-of-life training in selected residency and fellowship programs: A status report. Academic Medicine 77:299–304. Weissman DE, Block SD, Blank L, Cain J, Cassem N, Danoff D, Foley K, Meier D, Schyve P, Theige D, Wheeler HB. 1999. Recommendations for incorporating palliative care education into the acute care hospital setting. Academic Medicine 74(8):871–877. Weissman DE, Griffie J, Gordon D, Dahl JL. 1997. A role model program to promote institutional changes for management of acute and cancer pain. Journal of Pain Symptom Management 4(5):274–279. Weithorn LA, Campbell SB. 1982. The competency of children and adolescents to make informed treatment decisions. Child Development 53:1589–1598. Wenger NS, Kanouse DE, Collins RL, Liu H, Schuster MA, Gifford AL, Bozzette SA, Shapiro M. 2001. End-of-life discussions and preferences among persons with HIV. Journal of the American Medical Association 285(22):2880–2887. Whitfield JM, Siegel RE, Glicken AD, Harmon RJ, Powers LK, Goldson EJ. 1982. The application of hospice concepts to neonatal care. American Journal of Disabled Children 136(5):421–424. Whitten P, Doolittle G, Hellmich S. 2001. Telehospice: Using telecommunication technology for terminally ill patients.Journal of Clinical Monitoring and Computing 6(4). [Online]. Available: http://www.ascusc.org/jcmc/vol6/issue4/whitten2.html [accessed April 16, 2002]. WHO (World Health Organization). 1990. Cancer Pain Relief and Palliative Care.WHO Technical Report Series 804. Geneva: WHO. WHO. 1998. Cancer Pain Relief and Palliative Care in Children.Geneva: WHO. Wijdicks EF. 2001. The diagnosis of brain death. New England Journal of Medicine344(16): 1215–1221. Williams DL, Gelijns AC, Moskowitz AJ, Weinberg AD, Ng JH, Crawford E, Hayes CJ, Quaegebeur JM. 2000. Hypoplastic left heart syndrome: Valuing the survival. Journal of Thoracic and Cardiovascular Surgery 119(4 Pt 1):720–731. Williams DG, Hatch DJ, Howard RF. 2001a. Codeine phosphate in paediatric medicine. British Journal of Anaesthesia 86:413–421. Williams MA, Lipsett PA, Shatzer JH, Rushton CH, Berkowitz ID, Mann SL, Lane K, Knapp JC, Humphreys SL, Zaeske R, Haywood C. 2001b. Experiential, interdisciplinary training in end-of-life care and organ donation. Critical Care Medicine 28 (Suppl):A204. Williams MA, Rushton CH, Grochowski E, Shatzer JH, Berkowitz ID, Mann SL, Lane K, Zaeske R, Haywood C, Lipsett PA. 2002 (January). Family attitudes about organ donation. Critical Care Medicine 29:A82. Presented at the 31st Conference of Society for Critical Care Medicine. Williamson-Noble E. No date. Alexander: A Windflower’s Story. [Online]. Available: http://www.wish.org/home/frame_aboutus.htm [accessed March 31, 2002]. Willinger M, Hoffman HJ, Wu KT, Hou JR, Kessler RC, Ward SL, Keens TG, Corwin MJ. 1998. Factors associated with the transition to non-prone sleep positions of infants in the United States: The National Infant Sleep Position Study.Journal of the American Medical Association 280:329–339. Wing B. 1997 (April 15). Presentation to the National Committee of Vital and Health Statistics Subcommittee on Health Data Needs, Standards, and Security. [Online]. Available: http://ncvhs.hhs.gov/97041516.htm [accessed March 20, 2002]. Wisconsin’s BadgerCare program. [Online]. Available: http://www.dhfs.state.wi.us/badgercare/ [accessed March 31, 2002].

OCR for page 392
WMA (World Medical Association). 1964. Declaration of Helsinki: Ethical Principles for Medical Research Involving Human Subjects. Adopted June 1964, Helsinki, Finland, and most recently amended October 2000. [Online]. Available: http://www.wma.net/e/policy/17-c_e.html [accessed December 17, 2001]. Wolfe J, Grier HE, Klar N, Levin SB, Ellenbogen JM, Salem-Schatz S, Emanuel EJ, Weeks JC. 2000a. Symptoms and suffering at the end of life in children with cancer. New England Journal of Medicine 342:326–333. Wolfe J, Klar N, Grier HE, Duncan J, Salem-Schatz S, Emanuel EJ, Weeks JC. 2000b. Understanding of prognosis among parents of children who died of cancer: Impact on treatment goals and integration of palliative care. Journal of the American Medical Association 284(19):2469–2475. Wolfe J. 2001 (June 11). Statement and discussion with the IOM committee on improving palliative and end-of-life care for children and their families, Open Meeting. Washington, DC. Wood AJ. 2001. Racial differences in the response to drugs—pointers to genetic differences. New England Journal of Medicine 344(18):1393–1396. Woolf SH, Grol R, Hutchinson A, Eccles M, Grimshaw J. 1999. Potential benefits, limitations, and harms of clinical guidelines. British Medical Journal 318:527–530. Wooten B. 2001. Written, unpublished responses to survey of bereaved parents developed and distributed by J. Hilden and H. Janes-Hodder for Children’s Oncology Group Parent Advocates Group. Used with permission. Worden JW, Monahan JR. 2001. Caring for Bereaved Parents. In: Armstrong-Daley A, Zarbock S, eds. Hospice Care for Children, 2nd ed. New York: Oxford University Press. Pp. 137–156. Wordsworth, W. 1798. We Are Seven. The Complete Poetical Works. London: Macmillan and Co., 1888. [Online]. Available: www.bartleby.com/145 [accessed July 20, 2001]. Wright JL, Klein BL. 2001. Regionalized pediatric trauma systems. Clinical Pediatric Emergency Medicine 2:3–12. Wyeth-Ayerst Laboratories. 1999. Prescription Drug Benefit Cost and Plan Design Survey Report. Albuquerque, NM: Wellman Publishing, Inc. Yaster M, Krane E, Kaplan R, Cote C, Lappe D. 1997. Pediatric Pain Management and Sedation Handbook. St. Louis: Mosby. Young KD, Seidel JS. 1999. Pediatric cardiopulmonary resuscitation: A collective review. Annals of Emergency Medicine 33:195–205. Yudowsky BK, Tang SS, Siston AM. 2000 (October). Pediatrician Participation in Medicaid: Survey of Fellows of the American Academy of Pediatrics. [Online]. Available: http://www.aap.org/statelegislation/med-schip/Wholedpc.pdf [accessed July 12, 2001]. Zacharias M. 1998. Pain relief in children: Doing the simple things better.British Medical Journal 316:1552–1560. Zeltzer L. 1980. The adolescent with cancer. In: Kellerman J, ed. Psychological Aspects of Childhood Cancer. Springfield, IL: Charles C. Thomas. Zucker MB, Zucker HD, eds. 1997. Medical Futility and the Evaluation of Life-Sustaining Interventions. Oxford: Cambridge University Press.