To the Editor: Verhagen and Sauer (March 10 issue)1 emphasizethat euthanasia is becoming acceptable medical practice forinfants in the Netherlands in whom hopeless and unbearable sufferingis present. Doctors are not all-knowing, but pediatric palliativecare is a dynamic process that remediates suffering in childrenthrough careful assessment and treatment of all symptoms; thequality of life is enhanced, and families are supported.2
Access to pediatric palliation is poor, even in countries withfirst-class medical systems. A study in the Netherlands3 revealedthat the youngest patient receiving palliative care betweenMarch 2001 and February 2002 was seven years old. Verhagen andSauer's conviction that life-ending measures can be acceptablein newborns conflicts with the recommendations Sauer made onbehalf of the Confederation of European Specialists in Paediatrics.He and his colleagues invoked the doctrine of double effectand stated that every form of intentional killing should berejected in pediatrics.4 Perhaps if he and his patients hadbetter access to palliative care, he might return to his ethicalstance of 2001.
Dermot M. Murphy, M.B., B.S. Royal Hospital for Sick Children Glasgow G38SJ, United Kingdom dermot.murphy{at}yorkhill.scot.nhs.uk
Jon Pritchard, F.R.C.P.(Edin.) Royal Hospital for Sick Children Edinburgh EH91LF, United Kingdom
References
Verhagen E, Sauer PJJ. The Groningen protocol -- euthanasia in severely ill newborns. N Engl J Med 2005;352:959-962. [Free Full Text]
Thornes R, Elston S, eds. Palliative care for young people, aged 13-24. Bristol, England: Association for Children with Life-Threatening Terminal Conditions & their Families, National Council for Hospice and Specialist Palliative Care Services, Scottish Partnership Agency For Palliative and Cancer Care, September 2001.
Kuin A, Courtens AM, Deliens L, et al. Palliative care consultation in the Netherlands: a nationwide evaluation study. J Pain Symptom Manage 2004;27:53-60. [CrossRef][Web of Science][Medline]
Sauer PJJ. Ethical dilemmas in neonatology: recommendations of the Ethics Working Group of the CESP (Confederation of European Specialists in Paediatrics). Eur J Pediatr 2001;160:364-368. [CrossRef][Web of Science][Medline]
To the Editor: Verhagen and Sauer observe that all reported cases of euthanasia in newborns in the Netherlands involvedinfants with severe forms of spina bifida. Mandatory folic acidfortification of flour would have prevented the developmentof spina bifida in most of these infants. The failure of theDutch government and that of many other countries to requirefolic acid fortification remains a tragic policy error.1 Whenwill European and other governments require this simple, safe,and inexpensive action? Folic acid fortification has been shownin several countries not only to prevent spina bifida, but alsovirtually to eliminate folate-deficiency anemia and to reduceserum concentrations of homocysteine, with likely reductionsin deaths from strokes and heart attacks.2,3,4 I encourage allphysicians to advocate forcefully for their governments to requirefolic acid fortification, using the emergency powers and expedited,short review process provided for in public health regulations.These regulations should be invoked to prevent the severe diseaseand disability that will continue to occur unnecessarily untilmandatory folic acid fortification is implemented.
Godfrey P. Oakley, Jr., M.D. Rollins School of Public Health of Emory University Atlanta, GA 30322 gpoakley{at}mindspring.com
Dr. Oakley reports having served as a consultant for Johnson& Johnson and Ortho McNeil.
References
Oakley GP. Delaying folic acid fortification of flour. BMJ 2002;324:1348-1349. [Erratum, BMJ 2002;325:259.] [Free Full Text]
Mersereau P, Kilker K, Carter H, et al. Spina bifida and anencephaly before and after folic acid mandate -- United States, 1995-1996 and 1999-2000. JAMA 2004;292:325-326. [Free Full Text]
Casas JP, Bautista LE, Smeeth L, Sharma P, Hingorani AD. Homocysteine and stroke: evidence on a causal link from mendelian randomisation. Lancet 2005;365:224-232. [Web of Science][Medline]
To the Editor: When my cousin Jay was born, the doctors said,in so many words, that his diagnosis and prognosis were certain:severe spina bifida, a very poor quality of life, and no hopeof improvement.1 Jay did suffer. He suffered 26 surgeries andall of the indignities that follow from paralysis, incontinence,and bodily disfigurement. Moreover, like the rest of us, Jaynever became fully self-sufficient.
Yet Jay bore his suffering with irrepressible hope and goodhumor that inspired and encouraged innumerable people who hadthe privilege of knowing him. When he died three days beforehis 14th birthday, 2000 people attended the funeral to celebrateJay's uncommonly rich life. A passerby commented, "Someone importantmust have died."
With different parents, Jay could have qualified for the Groningenprotocol. Doctors might have "performed a deliberate life-endingprocedure"1 in Jay after making claims no mortal can sustain2— that his prognosis was "certain," and his sufferingwas "hopeless and unbearable."1 Those of us who knew Jay areglad there was no such opportunity.
Farr A. Curlin, M.D. University of Chicago Chicago, IL 60637
References
Verhagen E, Sauer PJJ. The Groningen protocol -- euthanasia in severely ill newborns. N Engl J Med 2005;352:959-962. [Free Full Text]
Drs. Verhagen and Sauer reply: We agree with Oakley that folicacid fortification is important. However, it cannot preventall abnormalities in newborns that cause unbearable suffering.
We cannot comment on Jay's case, described by Curlin, becausewe did not know him. He suffered, but according to Curlin, thesuffering was acceptable. As we noted in our Perspective article,the role of the parents is paramount. Clearly, these parentswere supportive, but the question is whether, without theseparents, would the suffering have been bearable?
Murphy and Pritchard raise the issue that pediatric palliativecare is not always accessible or adequate. They suggest thatimprovement in palliative care services could lead to a situationin which euthanasia in sick newborns would no longer be practiced.We agree that patients will certainly profit from improved accessto palliative care. At the same time, we are convinced thateuthanasia in patients with a hopeless prognosis and severeand sustained suffering, waiting for the "ideal" standard ofcare, can be acceptable. The Groningen protocol was designedto motivate physicians to adhere to the highest standards ofdecision making and to reduce hidden euthanasia by facilitatingreporting. The protocol requires that all possible palliativemeasures be exhausted before euthanasia is performed. This requirementmight do more in mobilizing the availability of palliative careservices than the current situation of unreported practice.
The recommendations that Murphy and Pritchard refer to are aconsensus statement of pediatricians in Europe.1 Sauer's personalview is that active life-ending procedures can be acceptable.
Eduard Verhagen, M.D., J.D. Pieter J.J. Sauer, M.D., Ph.D. University Medical Center Groningen 9700 RB Groningen, theNetherlands
References
Sauer PJ. Ethical dilemmas in neonatology: recommendations of the Ethics Working Group of the CESP (Confederation of European Specialists in Paediatrics). Eur J Pediatr 2001;160:364-368. [CrossRef][Web of Science][Medline]
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