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„Lasst uns eine Oase sein, wo man begeistert ist vom Leben, von jedem Leben, auch von dem Leben, das sehr viel Mühe kostet.“ (Phil Bosmans; http://www.daszitat.de/)
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Literatur
Akademie für Ethik in der Medizin, Deutsche Gesellschaft für Kinderheilkunde, Deutsche Gesellschaft für Medizinrecht (1992) Grenzen ärztlicher Behandlungspflicht bei schwerst geschädigten Neugeborenen. Einbecker Empfehlung, Revidierte Fassung 1992. Ethik Med 4:103–104, Medizinrecht 10:206–207
American Academy of Pediatrics (2000) Special considerations. In: Brander D, Kattwinkel J, Denson S, Zaichkin J (eds) Textbook of neonatal resuscitation, 4th edn. American Academy of Pediatrics/American Heart Association, Elk Grove Village, IL, pp 7–19
Ancel PY, Livinec F, Larroque B et al., and the EPIPAGE study group (2006) Cerebral palsy among very preterm children in relation to gestational age and neonatal ultrasound abnormalities: the EPIPAGE cohort study. Pediatrics 117: 828–835
Andrews BT, Hammer GB (1997) Pediatric neurosurgical intensive care. 1st edn. American Association of Neurological Surgeons, Park Ridge, IL, p 310
Association for Children with Life-threatening or Terminal Conditions and their Families (ACT) and the Royal College of Paediatrics and Child Health (1997) Report of a Joint Working Party of the Association for Children with Life-threatening or Terminal Conditions and their Families and the Royal College of Paediatrics and Child Health. A Guide to the development of children’s palliative care services. ACT, Bristol
Association for Children with Life-threatening or Terminal Conditions and their Families (ACT), the National Council for Hospice and Specialist Palliative Care Services (NCHSPCS) and the Scottish Partnership Agency for Palliative and Cancer Care (SPAPCC) (2001) Palliative care for young people aged 13–24. ACT, NCHSPCS, SPAPCC, Bristol, London, Edinburgh
AWMF online (1999) Frühgeburt an der Grenze der Lebensfähigkeit des Kindes. LeitlinieNr. 024/019: 1–8, http://www.uni-duesseldorf.de/AWMF/ll-na/024-019.htm. Gesehen 24 Okt 2007
Bach JR, Saporito LR (1996) Criteria for extubation and tracheostomy tube removal for patients with ventilatory failure. A different approach to weaning. Chest 110: 1566–1571
Bach JR, Campagnolo DI, Hoeman S (1991) Life satisfaction of individuals with Duchenne muscular dystrophy using long-term mechanical ventilatory support. Am J Phys Med Rehabil 70: 129–135
Bach JR, Baird JS, Plosky D et al. (2002) Spinal muscular atrophy type 1: management and outcomes. Pediatr Pulmonol 34:16–22
Bach JR, Vega J, Majors J, Friedman A (2003) Spinal muscular atrophy type 1 quality of life. Am J Phys Med Rehabil 82: 137–142
Bach JR, Saltstein K, Sinquee D et al. (2007) Long-term survival in Werdnig-Hoffmann disease. Am J Phys Med Rehabil 86:339–345
Back AL, Arnold RM, Quill TE (2003) Hope for the best, and prepare for the worst. Ann Intern Med 138(5): 439–443
Ballabh P, Kumari J, Al Kouatly HB et al. (2003) Neonatal outcome of triplet versus twin and singleton pregnancies: a matched case control study. Eur J Obstet Gynecol Reprod Biol 107: 28–36
Barnea O, Austin EH, Richman B, Santamore WP (1994) Balancing the circulation: theoretic optimization of pulmonary/ systemic flow ratio in hypoplastic left heart syndrome. J AmColl Cardiol 24(5): 1376–1381
Beauchamp T, Childress J (2001) Principles of biomedical ethics. Oxford University Press, Oxford
Berger S, Konduri GG (2006) Pulmonary hypertension in children: the twenty-first century. Pediatr Clin North Am 53(5): 961–987
Berger TM, Büttiker V, Fauchère JC et al., Arbeitsgruppe der schweizerischen Gesellschaft für Neonatologie (2002) Empfehlungen zur Betreuung von Frühgeborenen an der Grenze zur Lebensfähigkeit (Gestationsalter 22–26 SSW). Schweiz Arztez 83: 1589–1595
Birnkrant DJ, Pope JF, Martin JE et al. (1998) Treatment of type I spinal muscular atrophy with noninvasive ventilation and gastrostomy feeding. Pediatr Neurol 18: 407–410
Bluebond-Langner M (1996) In the Shadow of illness. Princeton University Press, Princeton, NJ
Bluebond-Langner M, Belasco JB, Goldman A, Belasco C (2007) Understanding parents’ approaches to care and treatment children with cancer when standard therapy has failed. J Clin Oncol 25: 2414–2419
Boucek MM, Waltz DA, Edwards LB et al.; International Society for Heart and Lung Transplantation (2006) Registry of the International Society for Heart and Lung Transplantation: ninth official pediatric heart transplantation report — 2006. J Heart Lung Transplant 25(8): 893–903
Bradshaw G, Hinds P, Lensing S et al. (2005) Cancer-related deaths in children and adolescents. J Palliat Med 8: 86–95
Brickner ME, Hillis LD, Lange RA (2000a) Congenital heart disease in adults. first of two parts. N Engl J Med 342(4): 256–263
Brickner ME, Hillis LD, Lange RA (2000b) Congenital heart disease in adults. second of two parts. N Engl J Med 342(5):334–342
Bundesärztekammer (2004) Grundsätze zur ärztlichen Sterbebegleitung. Dtsch Arztebl 101: A1298–A21299. http://www.bundesaerztekammer.de, Suchbegriff „Grundsätze Sterbebegleitung“. Aktualisiert 15. Sept. 2006
Byrne TN (1992) Spinal cord compression from epidural metastases. N Engl J Med 327: 614–619
Carnevale FA (2007) Revisiting Goffman’s stigma: the social experience of families with children requiring mechanical ventilation at home. J Child Health Care 11: 7–18
Carnevale FA, Alexander E, Davis M et al. (2006) Daily living with distress and enrichment: the moral experience of families with ventilator-assisted children at home. Pediatrics 117:e48–60
Casell KA, O’Connell CM, Baskett TF (2004) The origins and outcomes of triplet and quadruplet pregnancies in Nova Scotia: 1980 to 2001. Am J Perinatol 21: 439–445
Chatwin M, Ross E, Hart N et al. (2003) Cough augmentation with mechanical insufflation/exsufflation in patients with neuromuscular weakness. Eur Respir J 21: 502–508
Chiu YK, Prendiville JS, Bennett SM et al. (1999) Pain management of junctional epidermolysis bullosa in an 11-year-old boy. Pediatr Dermatol 16: 465–468
Choo-Kang LR, Ogunlesi FO, McGrath-Morrow SA et al. (2002) Recurrent pneumothoraces associated with nocturnal noninvasive ventilation in a patient with muscular dystrophy. Pediatr Pulmonol 34: 73–78
Collins JJ, Byrnes ME, Dunkel IJ et al., United Kingdom Children’s Cancer Study Group/Paediatric Oncology Nurses’ Forum Palliative Care Working Group (2000) The measurement of symptoms in children with cancer. J Pain Symptom Manage 19: 363–377
Consensus Development Conference (1999) Clinical indications for noninvasive positive pressure ventilation in chronic respiratory failure due to restrictive lung disease, COPD, and nocturnal hypoventilation — a consensus conference report. Chest 116: 521–534
Craig F (2006) Adolescents and young adults. In: Goldman A, Hain R, Liben S (eds) Oxford textbook of palliative care for children. Oxford University Press, Oxford, pp 108–118
Deutscher Juristentag (2006) Beschlüsse des 66. Deutschen Juristentages. Stuttgart, 19.–22.09.2006. Deutscher Juristentag e.V., Bonn. http://www.djt.de/files/djt/66/66_DJT_Beschluesse.pdf. Gesehen 24 Okt 2007
Dilch A, Urlesberger B, Berger J, Österreichische Gesellschaft für Kinder-und Jugendheilkunde, (2005) Erstversorgung von Frühgeborenen an der Grenze der Lebensfähigkeit. Monatsschr Kinderheilkd 153: 711–715. http://www.docs4you.at. Gesehen 24 Okt 2007
Dohna-Schwake C, Ragette R, Teschler H et al. (2006) IPPB-assisted coughing in neuromuscular disorders. Pediatr Pulmonol 41: 551–557
Doyle LW, Betheras FR, Ford GW et al. (2000) Survival, cranial ultrasound and cerebral palsy in very low birth weight infants: 1980 versus 1990 s. J Paediatr Child Health 36: 7–12
Drillien CM (1958) Growth and development in a group of children of very low birth weight. Arch Dis Child 33: 10
Dubowitz V (1995) Chaos in the classification of SMA: a possible resolution. Neuromuscul Disord 5: 3–5
Eagle M, Baudouin S, Chandler C (2002) Survival in Duchenne muscular dystrophy: improvements in life expectancy since 1967 and the impact of home nocturnal ventilation. Neuromuscul Disord 12: 926–929
Earle RJ, Rennick JE, Carnevale FA (2006) “It’s okay, it helps me to breathe”: the experience of home ventilation from a child’s perspective. J Child Health Care 10: 270–282
Eicken A, Kolb C, Lange S et al. (2006) Implantable cardioverter defibrillator (ICD) in children. Int J Cardiol 107(1): 30–35
Engelhardt T Jr, Khushf G (1995) Futile care for the critically ill patient. Curr Opin Crit Care 1: 329–333
ESHRE Capri Workshop Group (2000) Multiple gestation pregnancy. Hum Reprod 15: 1856–1864
Ezeanolue EE, Wodi AP, Patel R et al. (2006) Sexual behaviors and procreational intentions of adolescents and young adults with perinatally acquired human immunodeficiency virus infection: experience of an urban tertiary center. J Adolesc Health 38: 719–725
Faulkner KW, Thayer PB, Coulter DL (2005) Neurological and neuromuscular symptoms. In: Goldmann A, Hain R, Liben S (eds) Oxford textbook of palliative care for children. Oxford University Press, Oxford
Fauroux B, Sardet A, Foret D (1995) Home treatment for chronic respiratory failure in children: a prospective study. Eur Respir J 8: 2062–2066
FIGO Committee Report (2006) Ethical recommendations on multiple pregnancy and multifetal reduction. FIGO Committee for the Ethical Aspects of Human Reproduction and Women’s Health. Int J Gynecol Obstet 92: 331–332
Filippis AP de, Law K, Curtin S, Eckman JR (2007) Blood is thicker than water: the management of hyperviscosity in adults with cyanotic heart disease. Cardiol Rev 15(1): 31–34
Finder JD, Birnkrant D, Carl J et al. (2004) Respiratory care of the patient with Duchenne muscular dystrophy: ATS consensus statement. Am J Respir Crit Care Med 170: 456–465
Fine JD, Johnson LB, Weiner M, Suchindran C (2004) Assessment of mobility, activities and pain in different subtypes of epidermolysis bullosa. Clin Exp Dermatol 29: 122–127
Fine JD, Eady RA, Bauer EA et al. (2008) The classification of inherited epidermolysis bullosa (EB): report of the Third International Consensus Meeting on Diagnosis and Classifiaction of EB. J Am Acad Dermatol (in press)
Fletcher J (1973) Moral aspects. In: Round table: decision-making; moral, legal, and institutional implications. Ross-conference. Ross Labs, Report 65. Columbus, Ohio, pp 70–71
Frühwald MC (2006) ZNS-Tumoren im Kindes-und Jugendalter: Diagnostik, Therapiemöglichkeiten und palliative Ansätze. Kinder Jugendarzt 37: 633–645
Garrard E, Wilkinson S (2005) Passive euthanasia. J Med Ethics 31: 64–68
Gaughan DM, Hughes MD, Oleske JM et al.; Pediatric AIDS Clinical Trials Group 219C Team (2004) Psychiatric hospitalizations among children and youths with human immunodeficiency virus infection. Pediatrics 113: e544–551
Gewillig M (2005) The Fontan circulation. Heart 91(6): 839–846
Goldman A (1996) Home care fort the dying child. J Palliat Care 12: 16–19
Goldman A, Hewitt M, Collins GS et al. (2006) Symptoms in children/young people with progressive malignant disease: United Kingdom Children’s Cancer Study Group/Paediatric Oncology Nurses Forum survey. Pediatrics 117: e1179–1186
Goodenough B, Drew D, Higgins S et al. (2004) Bereavement outcomes for parents who lose a child to cancer: are place of death and sex of parent associated with differences in psychological functioning? Psychooncology 13: 779–791
Goodlin SJ, Hauptman PJ, Arnold R et al. (2004) Consensus statement: palliative and supportive care in advanced heart failure. J Card Fail 10(3): 200–209
Gozal D (1997) Nocturnal ventilatory support in patients with cystic fibrosis: comparison with supplemental oxygen. Eur Respir J 10: 1999–2003
Gozal D (1998) Congenital central hypoventilation syndrome: an update. Pediatr Pulmonol 26: 273–282
Grubman S, Gross E, Lerner-Weiss N et al. (1995) Older children and adolescents living with perinatally acquired human immunodeficiency virus infection. Pediatrics 95: 657–663
Gupta S, Giuffre RM, Crawford S, Waters J (1998) Covert fears, anxiety and depression in congenital heart disease. Cardiol Young 8(4): 491–499
Hansman G, Humpl T, Zimmerman A et al. (2007) Neue Reanimationsrichtlinien der ILCOR bei Früh-und Reifgeborenen: kritische Diskussion und Vorschläge zur praktischen Umsetzung. Klin Padiatr 219: 50–57
Hardart MK, Burns JP, Truog RD (2002) Respiratory support in spinal muscular atrophy type I: a survey of physician practices and attitudes. Pediatrics 110: e24
Hauptman PJ, Havranek EP (2005) Integrating palliative care into heart failure care. Arch Intern Med 165(4): 374–378
Haynes L (2006) Nutritional support for children with epidermolysis bullosa. Br J Nurs 15: 1097–1101
Haynes L, Atherton D, Clayden G (1997) Constipation in epidermolysis bullosa: successful treatment with a liquid fibercontaining formula. Pediatr Dermatol 14: 393–396
Hechler T, Blankenburg M, Friedrichsdorf SJ et al. (2008) Parents’ perspective: symptoms, quality of life, characteristics of death, end-of-life decisions for children dying from cancer and impact on parents’ future life. Klin Padiatr (in press)
Hein H, Rasche K, Wiebel M et al., AG Heimbeatmung und Respiratorentwöhnung (2006) Empfehlungen zur Heim-und Langzeitbeatmung. http://www.heimbeatmung.de/pdf/empfehlung_ISB.pdf. Gesehen 10 Sept 2007
Herod J, Denyer J, Goldman A, Howard R (2002) Epidermolysis bullosa in children: pathophysiology, anaesthesia and pain management. Paediatr Anaesth 12: 388–397
Hetzer R, Stiller B (2006) Technology insight: use of ventricular assist devices in children. Nat Clin Pract Cardiovasc Med 3(7): 377–386
Hiersche HD, Hirsch G, Graf-Baumann T (1987) Grenzen ärztlicher Behandlungspflicht bei schwerstgeschädigten Neugeborenen „Einbecker Empfehlung“. Springer, Berlin Heidelberg NewYork Tokio
Hodson ME, Madden BP, Steven MH et al. (1991) Non-invasive mechanical ventilation for cystic fibrosis patients — a potential bridge to transplantation. Eur Respir J 4: 524–527
Hoekstra RE, Ferrara TB, Couser RJ et al. (2004) Survival and long-term neurodevelopmental outcome of extremely premature infants born at 23–26 weeks’ gestational age at a tertiary center. Pediatrics 113: e1–e6
Hohenauer L (1971) Studien zur intrauterinen Dystrophie, II: Folgen intrauteriner Mangelernährung beim Menschen. Eine vergleichende Studie an Zwillingspaaren mit verschiedenen Geburtsgewichten. Padiatr Padol 6: 17–30
Howland LC, Storm DS, Crawford SL et al. (2007) Negative life events: risk to health-related quality of life in children and youth with HIV infection. J Assoc Nurses AIDS Care 18: 3–11
Huikuri HV, Castellanos A, Myerburg RJ (2001) Sudden death due to cardiac arrhythmias. N Engl J Med 345(20): 1473–1482
Hunt A, Burne R (1995) Medical and nursing problems of children with neurodegenarative disease. Palliat Med 9: 19–26
Hunt H, Valdimarsdottir U, Mucci L et al. (2006) When death appears best for the child with severe malignancy: a nationwide parental follow-up. Palliat Med 20: 567–77
Hynson JL, Sawyer SM (2001) Paediatric palliative care: distinctive needs and emerging issues. J Paediatr Child Health 37: 323–325
Ioos C, Leclair-Richard D, Mrad S et al. (2004) Respiratory capacity course in patients with infantile spinal muscular atrophy. Chest 126: 831–837
Jablonka S, Rossoll W, Schrank B, Sendtner M (2000) The role of SMN in spinal muscular atrophy. J Neurol 247: 137–142
Jalmsell L, Kreicbergs U, Onelov E (2006) Symptoms affecting children with malignancies during the last month of life: a nationwide follow-up. Pediatrics 117: 1314–1320
Janssen G, Friedland C, Richter U et al. (2004) Ambulante palliativmedizinische Versorgung krebskranker Kinder und ihrer Familien. Klin Padiatr 216: 183–188
Kaal EC, Vecht CJ (2004) The management of brain edema in brain tumors. Curr Opin Oncol 16: 593–600
Kaulitz R, Hofbeck M (2005) Current treatment and prognosis in children with functionally univentricular hearts. Arch Dis Child 90(7): 757–762
Kleihues P, Louis DN, Scheithauer BW et al. (2002) The WHO classification of tumors of the nervous system. J Neuropathol Exp Neurol 61: 215–225; discussion 226–229
Klopfenstein KJ, Hutchison C, Clark C et al. (2001) Variables influencing end-of-life care in children and adolescents with cancer. J Pediatr Hematol Oncol 23: 481–486
Kohler M, Clarenbach CF, Böni L et al. (2005) Quality of life, physical disability, and respiratory impairment in Duchenne muscular dystrophy. Am J Respir Crit Care Med 172: 1032–1036
Korinthenberg R (2004) Hereditäre progrediente und nichtprogrediente Erkrankungen der peripheren Nerven und der Muskulatur. In: Reinhardt D (Hrsg) Therapieder Krankheiten im Kindes-und Jugendalter. Springer, Berlin Heidelberg New York Tokio
Kreicbergs U (2006) 7th International Symposium on Pediatric Pain. Vancouver, Kanada
Kreicbergs U, Valdimarsdottir U, Onelov E et al. (2004a) Anxiety and depression in parents 4–9 years after the loss of a child owing to a malignancy: a population-based follow-up. Psychol Med 34: 1431–1441
Kreicbergs U, Valdimarsdottir U, Onelov E et al. (2004b) Talking about death with children who have severe malignant disease. N Engl J Med. 351: 1175–1186
Kreicbergs U, Valdimarsdottir U, Steineck G et al. (2004c) A population-based nationwide study of parents’ perceptions of a questionnaire on their child’s death due to cancer. Lancet 364: 787–789
Kreicbergs U, Valdimarsdottir U, Onelov E et al. (2005) Carerelated distress: a nationwide study of parents who lost their child to cancer. J Clin Oncol 23: 9162–9171
Kreicbergs UC, Lannen P, Onelov E et al. (2007) Parental grief after losing a child to cancer: impact of professional and social support on long-term outcomes. J Clin Oncol 25: 3307–12
Lee GM, Gortmaker SL, McIntosh K et al.; Pediatric AIDS Clinical Trials Group Protocol 219C Team (2006) Quality of life for children and adolescents: impact of HIV infection and antiretroviral treatment. Pediatrics 117: 273–283
Li KK, Riley RW, Guilleminault C (2000) An unreported risk in the use of homenasal continuous positive airway pressure and home nasal ventilation in children: mid-face hypoplasia. Chest 117: 916–918
Lin YC, Golianu B (2006) Anesthesia and pain management for pediatric patients with dystrophic epidermolysis bullosa. J Clin Anesth 18: 268–271
Lloyd-Owen SJ, Donaldson GC, Ambrosino N et al. (2005) Patterns of home mechanical ventilation use in Europe: results from the Eurovent survey. Eur Respir J 25: 1025–1031
Loewenich V von (2003) Ethische Probleme bei Frühgeborenen. Monatsschr Kinderheilkd 151: 1263–1269
Loghin M, Levin VA (2006) Headache related to brain tumors. Curr Treat Options Neurol 8: 21–32
Mack JW, Hilden JM, Watterson J et al. (2005) Parent and physician perspectives on quality of care at the end of life in children with cancer. J Clin Oncol 23: 9155–9161
Maio G (1999) Ethik ohne Grenzen? Die französischen Bioethik-Gesetze und die Präimplantationsdiagnostik. Frauenarzt 40: 33–37
Manni R, Ottolini A, Cerveri I et al. (1989) Breathing patterns and HbSaO2 changes during nocturnal sleep in patients with Duchenne muscular dystrophy. J Neurol 236: 391–394
Marino BS (2002) Outcomes after the Fontan procedure. Curr Opin Pediatr 14(5): 620–626
Markestad T, Kaaresen PI, Rnnesstad A et al. (2005) Early death, morbidity, and need of treatment among extremely premature infants. Pediatrics 115: 1289–1298
McDonald H, Committee on Fetus and Newborn, American Academy of Pediatrics (2002) Perinatal care at the threshold of viability. Pediatrics 110: 1024–1027
Meberg A, Lindberg H, Thaulow E (2005) Congenital heart defects: the patients who die. Acta Paediatr 94(8): 1060–1065
Mehta S, Hill NS (2001) Noninvasive ventilation. AmJ Respir Crit Care Med 163: 540–577
Mellies U, Dohna-Schwake C (2005) Intermittierende Selbstbeatmung in der Pädiatrie. In: Schönhofer B (Hrsg) Nichtinvasive Beatmung. Ecomed, Heidelberg
Mellies U, Ragette R, Schwake C et al. (2003a) Daytime predictors of sleep disordered breathing in children and adolescents with neuromuscular disorders. Neuromuscul Disord 13: 123–128
Mellies U, Ragette R, Dohna SC et al. (2003b) Long-term noninvasive ventilation in children and adolescents with neuromuscular disorders. Eur Respir J 22: 631–636
Mellies U, Dohna-Schwake C, Ragette R et al. (2003c) Nächtliche nichtinvasive Beatmung bei Kindern und Jugendlichen mit neuromuskulären Erkrankungen: Einfluss auf Schlaf und Symptome. Wien Klin Wochenschr 115: 855–859
Mellies U, Dohna-Schwake C, Stehling F, Voit T (2004) Sleep disordered breathing in spinal muscular atrophy. Neuromuscul Disord 14: 797–803
Mellies U, Dohna-Schwake C, Stehling F, Voit T(2005a) Chronic respiratory failure in Pompe’s disease — Treatment with non-invasive ventilation. Neurology 64: 1465–1467
Mellies U, Dohna-Schwake C, Voit T (2005b) Respiratory function assessment and intervention in neuromuscular disorders. Curr Opin Neurol 18: 543–547
Mercurio MR (2006) Parental authority, patient’s best interest and refusal of resuscitation at borderline gestational age (commentary). J Perinatol 26: 452–457
Merkel R (2001) Früheuthanasie. Rechtsethische und strafrechtliche Grundlagen ärztlicher Entscheidungen über Leben und Tod in der Neonatalmedizin. Nomos, Baden-Baden, S 67
Mertens L, Hagler DJ, Sauer U et al. (1998) Protein-losing enteropathy after the Fontan operation: an international multicenter study. PLE study group. J Thorac Cardiovasc Surg 115(5): 1063–1073
Murray SA, Boyd K, Kendall M et al. (2002) Dying of lung cancer or cardiac failure: prospective qualitative interview study of patients and their carers in the community. BMJ 325(7370): 929
Mussatto K (2005) Psychological aspects of acute and chronic heart failure in children. In: Shaddy RE, Wernowsky G (eds) Pediatric heart failure. Taylor & Francis, London, pp 833–868
Narayanaswami P, Bertorini TE, Pourmand R, Horner LH (2000) Long-term tracheostomy ventilation in neuromuscular diseases: patient acceptance and quality of life. Neurorehabil Neural Repair 14: 135–139
Nieminen HP, Jokinen EV, Sairanen HI (2001) Late results of pediatric cardiac surgery in finland: a population-based study with 96% follow-up. Circulation 104(5): 570–575
Niermeyer S, Kattwinkel J, Reempts P van et al. (2000) International Guidelines for Neonatal Resuscitation: an excerpt from the Guidelines 2000 for Cardiopulmonary Resuscitation and Emergency Cardiovascular Care: International Consensus of Science Pediatrics 106: e29
Norozi K, Wessel A, Alpers V et al. (2006) Incidence and risk distribution of heart failure in adolescents and adults with congenital heart disease after cardiac surgery. Am J Cardiol 97(8): 1238–1243
Oleske JM, Czarniecki L (1999) Continuum of palliative care: lessons from caring for children infected with HIV-1. Lancet 354: 1287–1291
Paditz E, Zieger S, Bickhard J et al. (2000) Lebensqualitat unter Heimbeatmung im Kindes-und Jugend-und jungem Erwachsenenalter, unterschiedliche Sichtweisen von Eltern und Kindern. Somnologie 4: 13–19
Pantilat SZ, Steimle AE (2004) Palliative care for patients with heart failure. JAMA 291(20): 2476–2482
Phillips MF, Smith PE, Carroll N et al. (1999) Nocturnal oxygenation and prognosis in Duchenne muscular dystrophy. Am J Respir Crit Care Med 160: 198–202
Ragette R, Mellies U, Schwake C et al. (2002) Patterns and predictors of sleep disordered breathing in primary myopathies. Thorax 57: 724–728
Ravilly S, Robinson W, Suresh S et al. (1996) Chronic pain in cystic fibrosis. Pediatrics 98: 741–747
Rawlings G, Stewart A, Reynolds EO, Strang LB (1971) Changing prognosis for infants of very low birth weight. Lancet I: 516–519
Rideau Y, Jankowski LW, Grellet J (1981) Respiratory function in the muscular dystrophies. Muscle Nerve 4: 155–164
Rijken M, Stoelhorst GM, Martens SE et al. (2003) Mortality and neurologic, mental, and psychomotor development at 2 years in infants born less than 27 weeks’ gestation: the Leiden follow-up project on prematurity. Pediatrics 112: 351–358
Robinson WM, Ravilly S, Berde C, Wohl ME (1997) End-of-life care in cystic fibrosis. Pediatrics 100: 205–209
Rutledge T, Reis VA, Linke SE et al. (2006) Depression in heart failure a meta-analytic review of prevalence, intervention effects, and associations with clinical outcomes. J Am Coll Cardiol 48(8): 1527–1537
Saigal S, Feeny D, Furlong W et al. (1994) Comparison of the health-related quality of life of extremely low birth weight children and a reference group of children at age eight years. J Pediatr 125: 418–425
Salle B, Andre M, Cret MME, Richard P et al. (1972) La maladie des membranes hyalines chez le nouveau-né. Expérience d’un centre de pathologie néo-natale. Pediatrie 27: 27–36
Sayeed SA (2005) Baby doe redux? The Departement of Health and Human Services and the Born-Alive Infants Protection Act of 2002: a cautionary note on normative neonatal practice. Pediatrics 116: e576–3585
Schechner S (1980) For the 1980s: how small is too small? Clin Perinatol 7: 135–143
Schlosser RL, Bauer K, Loewenich V von (2007) Praktizierte Therapie-Begrenzung bei schwerkranken Früh-und Termingeborenen auf einer neonatologischen Intensivstation. Monatsschr Kinderheilkd 155: 362–369
Selman LE, Harding R, Beynon T et al. (2007) Improving end-of-life care for patients with chronic heart failure patients: “Let’s hope it’ll get better, when I know in my heart of hearts it won’t”. Heart 93(8): 963–967
Shah S, Weitman S, Langevin AM et al. (1998) Phase I therapy trials in children with cancer. J Pediatr Hematol Oncol 20: 431–438
Silka MJ, Bar-Cohen Y (2006) Pacemakers and implantable cardioverter-defibrillators in pediatric patients. Heart Rhythm 3(11): 1360–1366
Silka MJ, Szmuszkovicz JR (2005) Arrhythmias and sudden cardiac death in pediatric heart failure. Taylor & Francis, Boca Raton, FL, pp 433–447
Silka MJ, Hardy BG, Menashe VD, Morris CD (1998) A population-based prospective evaluation of risk of sudden cardiac death after operation for common congenital heart defects. J Am Coll Cardiol 32(1): 245–251
Simonds AK (2004) Living and dying with respiratory failure: facilitating decision making. Chron Respir Dis 1: 56–59
Simonds AK (2005) Ethical aspects of home long term ventilation in children with neuromuscular disease. Paediatr Respir Rev 6: 209–214
Simonds AK (2006) Risk management of the home ventilator dependent patient. Thorax 61: 369–371
Simonds AK, Muntoni F, Heather S, Fielding S (1998) Impact of nasal ventilation on survival in hypercapnic Duchenne muscular dystrophy. Thorax 53: 949–952
Simonds AK, Ward S, Heather S et al. (2000) Outcome of paediatric domiciliary mask ventilation in neuromuscular and skeletal disease. Eur Respir J 16: 476–481
Sirkiä K, Saarinen UM, Ahlgren B et al. (1997) Terminal care of the child with cancer at home. Acta Paediatr 86: 1125–1130
Sivasothy P, Brown L, Smith IE, Shneerson JM (2001) Effect of manually assisted cough and mechanical insufflation on cough flow of normal subjects, patients with chronic obstructive pulmonary disease (COPD), and patients with respiratory muscle weakness. Thorax 56: 438–444
Smith PE, Calverley PM, Edwards RH (1988) Hypoxemia during sleep in Duchenne muscular dystrophy. Am Rev Respir Dis 137: 884–888
Stewart AL, Turcan DM, Rawlings G, Reynolds EO (1977) Prognosis for infants weighing 1000 g or less at birth. Arch Dis Child 52: 97–104
Stewart AL, Reynolds EO, Lipscomb AP (1981) Outcome for infants of very low birthweight: survey of the world literature. Lancet I: 1038–1041
Streffer JR, Bitzer M, Schabet M et al. (2001) Response of radiochemotherapy-associated cerebral edema to a phytotherapeutic agent, H15. Neurology 56: 1219–1221
Surkan PJ, Kreicbergs U, Valdimarsdottir U et al. (2006a) Perceptions of inadequate health care and feelings of guilt in parents after the death of a child to a malignancy: a population-based long-term follow-up. J Palliat Med 9: 317–331
Surkan PJ, Dickman PW, Steineck G et al. (2006b) Home care of a child dying of a malignancy and parental awareness of a child’s impending death. Palliat Med 20: 161–169
Tudehope D, Burns YR, Gray PH et al. (1995) Changing patterns of survival and outcome at 4 years of children who weighted 500–999 g at birth. J Paediatr Child Health 31: 451–456
Tzeng AC, Bach JR (2000) Prevention of pulmonary morbidity for patients with neuromuscular disease. Chest 118: 1390–1396
Valdimarsdottir U, Kreicbergs U, Hauksdottir A et al. (2007) Parents’ intellectual and emotional awareness of their child’s impending death to cancer: a population-based long-term follow-up study. Lancet Oncol 8: 706–714
Veen S, Fekkes M, Koopman HM et al. (2001) Quality of life in preschool children born perterm. Dev Med Child Neurol 43: 460–465
Verhagen E, Sauer PJ (2005) The Groningen protocol — euthanasia in severely ill newborns. N Engl J Med 352: 0959–962
Vianello A, Bevilacqua M, Salvador V et al. (1994) Long-term nasal intermittent positive pressure ventilation in advanced Duchenne’s muscular dystrophy. Chest 105: 445–448
Vianello A, Arcaro G, Gallan F et al. (2004) Pneumothorax associated with long-term non-invasive positive pressure ventilation in Duchenne muscular dystrophy. Neuromuscul Disord 14: 353–355
Vianello A, Corrado A, Arcaro G et al. (2005) Mechanical insufflation-exsufflation improves outcomes for neuromuscular disease patients with respiratory tract infections. Am J Phys Med Rehabil 84: 83–88
Vickers JL, Carlise C (2000) Choices and control: parental experiences in pediatric terminalhomecare. J Pediatr Oncol Nurs 17: 12–21
Villa MP, Pagani J, Ambrosio R et al. (2002) Mid-face hypoplasia after long-term nasal ventilation. Am J Respir Crit Care Med 166: 1142–1143
Wallgren-Pettersson C, Bushby K, Mellies U, Simonds A (2004) 117th ENMC workshop: ventilatory support in congenital neuromuscular disorders — congenital myopathies, congenital muscular dystrophies, congenitalmyotonic dystrophy andSMA(II). 4–6 April 2003; Naarden, The Netherlands. Neuromuscul Disord 14: 56–69
Watterson G, Goldman A, Michalski A (2002) Corticosteroids in the palliative phase of paediatric brain tumours (abstract). Arch Dis Child 86: A76
Watts JL, Saigal S (2006) Outcome of extreme prematurity: as information increases so do the dilemmas (review). Arch Dis Child Fetal Neonatal Ed 91: F221–F225
Wick W, Kucker W (2004) Brain edema in neurooncology: radiological assessment and management. Onkologie 27: 261–266
Wilne SH, Ferris RC, Nathwani A, Kennedy CR (2006) The presenting features of brain tumours: a review of 200 cases. Arch Dis Child 91: 502–506
Wissenschaftlicher Beirat der Bundesärztekammer (1998) Richtlinien zur Feststellung des Hirntodes, 3. Fortschreibung 1997 mit Ergänzung gemäß Transplantationsgesetz (TPG). 24. Juli 1998. http://www.bundesaerztekammer.de, Suchwort „Hirntod“. Gesehen 24 Okt 2007
Wolfe J, Grier HE, Klar N (2000a) Symptoms and suffering at the end of life in children with cancer. N Engl J Med 342: 326–333
Wolfe J, McCallum DE, Byrne P (2000b) How children die in hospital. J Pain Symptom Manage 20: 417–23
Working Group “Ethical Aspects of Neonatology” of the Section Neonatology of the Paediatric Association of the Netherlands (NVK), approved by the board of the NVK (2004) Guidelines for End-of-Life Decision Making in Neonatology. English version 06.06.2004; Issued by the Version 2000. Niederländische Fassung auf der geschlossenen Website der niederländischen Gesellschaft fur Kinderheilkunde. Mitgeteilt am 06.06.2004 für die Vorbereitung der 30. Jahrestagung der GNPI (Gesellschaft für Neonatologie und pädiatrische Intensivmedizin), Ulm, 24.–26.06.2004 von Kolle L (Nijmegen)
Zerres K, Wirth B, Rudnik-Schoneborn S (1997) Spinal muscular atrophy — clinical and genetic correlations. Neuromuscul Disord 7: 202–207
Zimmerman M, Zimmerman R, Loewenich V von (1997) Die Behandlungspraxis bei schwerstgeschadigten Neugeborenen und Fruhgeborenen an deutschen Kliniken. Konzeption, Ergebnisse und ethische Implikationen einer empirischen Untersuchung. Ethik Med 9: 57–77
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von Loewenich, V. et al. (2008). Besonderheiten der pädiatrischen Palliativversorgung bei besonderen Patientengruppen. In: Zernikow, B. (eds) Palliativversorgung von Kindern, Jugendlichen und jungen Erwachsenen. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-540-48876-7_7
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