Abstract
In the Lancet of October 1993, a case study was presented on the life of Baby K., a baby girl born with anencephaly.1 Before birth the baby was already diagnosed with this very serious congenital birth defect. In babies with anencephaly the vault of the skull is absent, and though the brainstem is present, the cerebral cortex is rudimentary or absent. In the case of Baby K. it meant that she had reflex actions like respiration and reflex actions to touch and sound, but she never would gain consciousness. There is no cure for this disorder. Without medical interventions these children die within days to weeks after birth, (though exceptions have been described). When Baby K. was born, she did not breathe. She was put on artificial ventilation, awaiting who knows? The mother insisted on continued intensive care and refused to give permission for a do-not-resuscitate order. The doctors wanted to limit their interventions to comfort care or to care-for-the-dying and viewed the intensive treatment as not appropriate. The case was dealt with in court and the judge decided that the intensive treatment had to be continued. The physicians were furious: “Next, we’ll have to give her [this child without cerebral cortex] an artificial kidney or perform a liver or heart transplant. ”
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Notes
M. McCarthy, “Anencephalic baby’s right to life?”, The Lancet, vol. 342, October 9, (1993), p. 919.
J. Paris, “Guidelines on the Care of Anencephalic Infants: a Response to Baby K”, Journal of Perinatology, vol. 15, no. 4, 1995, p. 318–324.
S. Fry-Revere, “Anencephalic newborns: legal and ethical comments regarding the matter of baby ‘K’”, Paediatric Nursing, vol. 20, no. 3 (May-June 1994), pp. 283–6.
G. McAbee et al., “Prolonged survival of two anencephalic infants”, American Journal of Perinatology, vol. 10, no. 2 (March 1993), pp. 175–7.
See Paris (1995).
Fry-Revere (1994) p. 284.
See Paris (1995) p. 322.
See McCarthy (1993) p. 919.
World Health Organization, Primary Health Care: Report of the International Conference on Primary Health Care. Alma Ata, USSR, 1978.
In the meantime, the year 2000 approaches; health for everyone in this world is a distant concept. This goal was subsequently adjusted and narrowed down. “Health care for everyone” became “primary health care”, which was further narrowed down to a few subjects, such as vaccinations. Now, close to 2000, the only big goal that remains is: worldwide eradication of polio. The outlook worldwide for neonatology is somber.
The most important of these are: living with chronic illnesses and handicaps, and the dying process.
B. Verschuren and C. Versluys, Grenzen van medische behandeling bij pasgeborenen met een ernstige aandoening (Limits of Medical Treatment of Newborns with Severe Conditions). Baarn: VSOP Publishers, no. 6.
“Until a few years ago, NTD prevention was only possible by means of prenatal research” (NTD = Neural Tube Defect). Later is stated, “this however is not true prevention”. A.L. den Ouden et al., “Prevalentie, klinisch beeld en prognose van neuraalbuisdefecten in Nederland” (Prevalence, Diagnosis, and Prognosis of Neural Tube Defects), Nederlands Tijdschrift voor Geneeskunde, Vol. 140, no 42 (1996), pp. 2092–4.
W.L.H. Smelt, H. Jochemsen, G. van Bruggen, and D.J. Bakker, “Een medisch ethisch commentaar” (Some Medical Ethical Comments), Tijdschrift voor Geneeskunde en Ethiek, Vol. 5, no. 1 (1995), pp.28–9.
He would have wanted to lengthen each human life at all costs, even if this brought along much suffering and a limited positive outcome. Undoubtedly, this happened at times. Yet, the physician used to know his own limits. If he had nothing to offer, he didn’t bother the patient with medical treatments. Moreover, the hospitals carried more medical supplies than one had at home, such as oxygen. Yet, practically all the elderly would die at home, and not after a senseless stay in the intensive care unit of the hospital.
“Haeckel believed that numerous uncurably ill people were being kept alive artificially. As a result, the total number of patients in mental institutions in France would have increased by 30% over a period of 17 years. For that reason, Haeckel argues for the life termination of uncurably ill and seriously suffering patients, provided that the patient requests it, and that it be executed by a committee of physicians. Haeckel’s arguments are: [] the suffering of the patient and […] the uselessness of staying alive.” R.W.M. Croughs, “Euthanasie: een vergelijking van de huidige discussie in Nederland met de discussie in Duitsland vòòr 1933” (“Euthanasia: Comparing the Recent Dutch Discussion and the Discussion in Germany before 1933”), in: J. Stolk, Gebroken wereld — zwakzinnigenzorg en de vraag naar euthanasie (Broken World: Care of People with Mental Retardation and the Request for Euthanasia). Kampen: Kok Publishers, 1998.
From the diary of Jacob Bicker Raye: “May 30, 1751 […] a child that was bitten by a rabid dog, and after being observed by many doctors was considered incurably rabid, was suffocated’. …In my interpretation, this means that active euthanasia used to be considered permissible in the case of rabies, even indicated, and not practised with infrequency.” G.A. Lindeboom, Euthanasie in historisch perspectief (Euthanasia: a Historical Overview). Amsterdam: Rodopi Publishers, 1978, pp. 23–4.
Levensbeëindigend handelen bij wilsonbekwame patiënten. Deel I.: zwaar-defecte pasgeborenen. Utrecht: Koninklijke Nederlandsche Maatschappij tot Bevordering der Geneeskunst, 1990.
Doen of laten? Grenzen van het medisch handelen in de neonatologie. Utrecht: Dutch Association for Paediatrics, 1992.
See the following statement of the Court of Justice at Amsterdam, November 7, 1995: “witness D does not see any medical benefit in fighting the pain in such cases, and determines that in the given circumstances it was preferable to terminate the life of Rianne rather than managing the pain until the natural occurrence of death.” “Expert E points out that it would have been possible to treat the pain but not medically beneficial since death clearly was the planned outcome.” “The judge determined that treatment in the form of pain management was not beneficial.” “Uitspraak van het gerechtshof te Amsterdam d.d. 7 november 1995” (Verdict of the Amsterdam Court), Medisch Contact, Vol. 51, no. 6 (1996), pp. 196–9.
Statement of the County Court at Groningen, November 13, 1995. “Uitspraak van de arrondissementsrechtbank te Groningen d.d. 13 november 1995”, Medisch Contact, vol. 51, no 6. (1996), pp. 199–202.
T. van Willigenburg and W. Kuis (eds.), Op de grens van leven en dood: afzien van behandelen en levensbeëindiging in de neonatologie (On the Verge of Life and Death: Refraining from Treatment and Life Termination in Neonatology). Assen: Van Gorcum & Co. (1995).
Also see: G. van Bruggen, “Kinderartsen en gehandicapte baby’s: de situatie anno 1996” (Paediatricians and Handicapped Babies: the Situation in 1996), in Pro Vita Humana, Vol. 3, no. 1 (1996), pp. 1–5.
Percentage of aborted cases in relation to total number of reported cases of Down’s syndrome, the Northern Netherlands, 1994: of mothers in the age range 38–39 years: 75%; age range 40+ years: 100%; average of all age ranges: 55.6%. The abortions were induced around 17–18 weeks of gestation. Therefore, of the children with Down’s syndrome in 1994, 55% did not live to see their expected birth-date thanks to prenatal diagnosis followed by a selective abortion. (International Clearinghouse for birth defects monitoring systems, a non-governmental organisation in official relations with the World Health Organisation, Report 1995/96, pp. 134–5).
Compare: E.E.E. van Wijck, B. Sikken, and M.J. Dekker, Beeldvorming bij artsen over mensen met een verstandelijke handicap (How Physicians See People with Mental Retardation). Groningen: Wetenschapswinkel Geneeskunde en Volksgezondheid, State University, 1995, p. 25.
Also see: Het syndroom van Down, wat is optimale zorg? (Down’s Syndrome: what is Optimal Care?) Rotterdam: PAOG, in collaboration with Foundation for Down Syndrome Team Voorburg, 1996. The entire publication reflects the greatly improved care of children with Down’s syndrome. Only the chapter, “The unborn child with Down’s syndrome”, paints a different picture. Here is only spoken of “diagnostic procedures”, with considerable risks for the unborn child (0.3 — 1% chance of miscarriage) and a possible “intervention”. During this period, an intervention consists of induced abortion: the termination of the life of the unborn child.
Gelijke kansen. Medisch handelen rond pasgeborenen met een (verstandelijke) handicap (Equal Opportunities: Medical Treatment of Newborns with Mental Retardation). Utrecht: FVO, 1993.
The FVO talks of the necessity to treat all newborns, since “it is basically impossible to make a concrete statement regarding the expected life outcome immediately after birth” (see FVO (1993) p. 11, note 24). This is true if one is talking about an individual. It is possible, however, to make such a statement about a total patient population.
D. Tibboel, et al., “Grenzen aan de zorg; evaluatie van de besluitvorning rond het overlijden van 104 kinderen op een afdeling chirurgische Intensieve Zorg” (Limits of Care: Evaluating the Decisions around the Death of 104 Children in a Department of Surgical Intensive Care), Nederlands Tijdschrift voor Geneeskunde, Vol. 138, no. 19 (1994), pp. 953–8.
M.J.K. de Kleine et al., “Voortzetten of staken van levensverlengend handelen bij pasgeborenen: een onderzoek in 4 centra voor neonatale intensieve zorg” (Continuing or Withdrawal of Life Sustaining Treatment of Newborns: a Survey in Four Centers of Intensive Neonatal Care), Nederlands Tijdschrift voor Geneeskunde, Vol. 137, no. 10 (1993), pp. 496–500.
“The medical powers bouldered over her a couple of times. Thanks to them, she has to live this life.” Comment of one of the parents in: J. Stolk and H. Kars, Licht en schaduw: een onderzoek naar de zinervaring van ouders en groepsleiders in de zorg voor kinderen met een ernstige, meervoudige handicap (Light and Shadow: a Survey of the Experiences of Meaning of Parents and Group Leaders in the Care of Children with Profound Multiple Handicaps). Amersfoort: Vereniging’s Heeren Loo, 1998, pp. 114–5.
J. Lorber, “Results of selective treatment of spina bifida cystica,” Archives of Disease in Childhood, Vol. 56 (1981), pp. 822–30. Surgery would not be offered to the group with poor results. The group that was excluded from receiving surgical intervention would have a 50% chance of dying after the surgery, 30% would be severely handicapped, and 20% would only be motor-handicapped. Instead, they now all died. With this approach, the mortality rate of the group as a whole increased from 30–50% to 70%: more children died. But of the children that did receive surgical intervention, and of those that lived, a smaller percentage was seriously handicapped.
J.J. Rotteveel et al., “Actieve levensbeëindiging bij pasgeborenen met spina bifida?” (Life Termination of Newborns with Bifid Spine?), Nederlands Tijdschrift voor Geneeskunde, Vol. 140, no. 14 (1996), pp. 799–803.
J.J. Rotteveel reported that “in the dilemma of having respect for the human life and of the medical call to attempt to eradicate all factors leading to bio-medical accidents, there is, in our opinion, no place for active life termination. […]” This is an area of tension within which it certainly will be appropriate, in certain cases, to discuss where the priority should lie. It is our hope that discussions take place within the profession in which a code of conduct could be created. This is more valuable than these trial cases. Also see: A.L. Staal-Schreinemachers et al., “Toekornstperspectieven voor kinderen met spina bifida aperta” (Prospects for Children with Bifid Spine), Nederlands Tijdschrift voor Geneeskunde, Vol. 140, no. 24 (1996), pp. 1268–71.
Cited from reports in newspapers, in particular: Nederlands Dagblad, February 8, 1997.
“Mongoloid; this word was written on our hearts like a sentence; sometimes he seemed to me like a strange animal, having crawled out of a different nest.” From: G. Jansen-Smit, “Ons godsgeschenk” (God’s Gift to Us), in Een hand die in de mijne past (Poetry and Sayings about the World of People with Mental Retardation). Wezep: Bredewold Printers.
And, of course, other reactions of a psychosocial nature: the shock and shame felt by the parents when they find out their child is handicapped, the difficulty bonding with their child, and the reactions of their community (such as disappointed grandparents, or “how will I tell people at my work-place? ”).
“As the child gets older, the parents bond more with their child and find the thought of ending the life of their child more difficult” (p. 191). J. Stolk and A. van der Poel-van Vuuren, “Meningen van ouders over euthanasie bij hun ernstig gehandicapte kind” (Parents about Euthanasia of their Severely Handicapped Child), Nederlands Tijdschrift voor Zwakzinnigenzorg, no. 8 (1980), pp. 183–92.
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van Bruggen, D. (2000). Meaningfulness and Meaninglessness in Neonatology. In: Stolk, J., Boer, T.A., Seldenrijk, R. (eds) Meaningful Care. Springer, Dordrecht. https://doi.org/10.1007/978-94-015-9516-2_8
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