Euthanasia in Severely Ill Newborns
http://www.100md.com
《新英格兰医药杂志》
To the Editor: Verhagen and Sauer (March 10 issue)1 emphasize that euthanasia is becoming acceptable medical practice for infants in the Netherlands in whom hopeless and unbearable suffering is present. Doctors are not all-knowing, but pediatric palliative care is a dynamic process that remediates suffering in children through careful assessment and treatment of all symptoms; the quality of life is enhanced, and families are supported.2
Access to pediatric palliation is poor, even in countries with first-class medical systems. A study in the Netherlands3 revealed that the youngest patient receiving palliative care between March 2001 and February 2002 was seven years old. Verhagen and Sauer's conviction that life-ending measures can be acceptable in newborns conflicts with the recommendations Sauer made on behalf of the Confederation of European Specialists in Paediatrics. He and his colleagues invoked the doctrine of double effect and stated that every form of intentional killing should be rejected in pediatrics.4 Perhaps if he and his patients had better access to palliative care, he might return to his ethical stance of 2001.
Dermot M. Murphy, M.B., B.S.
Royal Hospital for Sick Children
Glasgow G38SJ, United Kingdom
dermot.murphy@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.
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.
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.
To the Editor: Verhagen and Sauer observe that all reported cases of euthanasia in newborns in the Netherlands involved infants with severe forms of spina bifida. Mandatory folic acid fortification of flour would have prevented the development of spina bifida in most of these infants. The failure of the Dutch government and that of many other countries to require folic acid fortification remains a tragic policy error.1 When will European and other governments require this simple, safe, and inexpensive action? Folic acid fortification has been shown in several countries not only to prevent spina bifida, but also virtually to eliminate folate-deficiency anemia and to reduce serum concentrations of homocysteine, with likely reductions in deaths from strokes and heart attacks.2,3,4 I encourage all physicians to advocate forcefully for their governments to require folic 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 disease and disability that will continue to occur unnecessarily until mandatory folic acid fortification is implemented.
Godfrey P. Oakley, Jr., M.D.
Rollins School of Public Health of Emory University
Atlanta, GA 30322
gpoakley@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.
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.
American Heart Association. Folic acid fortification may have lowered stroke deaths. 2004. (Accessed May 12, 2005, at http://www.americanheart.org/presenter.jhtml?identifier=3019554.)
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.
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 hope of improvement.1 Jay did suffer. He suffered 26 surgeries and all of the indignities that follow from paralysis, incontinence, and bodily disfigurement. Moreover, like the rest of us, Jay never became fully self-sufficient.
Yet Jay bore his suffering with irrepressible hope and good humor that inspired and encouraged innumerable people who had the privilege of knowing him. When he died three days before his 14th birthday, 2000 people attended the funeral to celebrate Jay's uncommonly rich life. A passerby commented, "Someone important must have died."
With different parents, Jay could have qualified for the Groningen protocol. Doctors might have "performed a deliberate life-ending procedure"1 in Jay after making claims no mortal can sustain2 — that his prognosis was "certain," and his suffering was "hopeless and unbearable."1 Those of us who knew Jay are glad 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.
Koogler TK, Wilfond BS, Ross LF. Lethal language, lethal decisions. Hastings Cent Rep 2003;33:37-41.
Drs. Verhagen and Sauer reply: We agree with Oakley that folic acid fortification is important. However, it cannot prevent all abnormalities in newborns that cause unbearable suffering.
We cannot comment on Jay's case, described by Curlin, because we did not know him. He suffered, but according to Curlin, the suffering was acceptable. As we noted in our Perspective article, the role of the parents is paramount. Clearly, these parents were supportive, but the question is whether, without these parents, would the suffering have been bearable?
Murphy and Pritchard raise the issue that pediatric palliative care is not always accessible or adequate. They suggest that improvement in palliative care services could lead to a situation in which euthanasia in sick newborns would no longer be practiced. We agree that patients will certainly profit from improved access to palliative care. At the same time, we are convinced that euthanasia in patients with a hopeless prognosis and severe and sustained suffering, waiting for the "ideal" standard of care, can be acceptable. The Groningen protocol was designed to motivate physicians to adhere to the highest standards of decision making and to reduce hidden euthanasia by facilitating reporting. The protocol requires that all possible palliative measures be exhausted before euthanasia is performed. This requirement might do more in mobilizing the availability of palliative care services than the current situation of unreported practice.
The recommendations that Murphy and Pritchard refer to are a consensus statement of pediatricians in Europe.1 Sauer's personal view 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, the Netherlands
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.
Access to pediatric palliation is poor, even in countries with first-class medical systems. A study in the Netherlands3 revealed that the youngest patient receiving palliative care between March 2001 and February 2002 was seven years old. Verhagen and Sauer's conviction that life-ending measures can be acceptable in newborns conflicts with the recommendations Sauer made on behalf of the Confederation of European Specialists in Paediatrics. He and his colleagues invoked the doctrine of double effect and stated that every form of intentional killing should be rejected in pediatrics.4 Perhaps if he and his patients had better access to palliative care, he might return to his ethical stance of 2001.
Dermot M. Murphy, M.B., B.S.
Royal Hospital for Sick Children
Glasgow G38SJ, United Kingdom
dermot.murphy@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.
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.
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.
To the Editor: Verhagen and Sauer observe that all reported cases of euthanasia in newborns in the Netherlands involved infants with severe forms of spina bifida. Mandatory folic acid fortification of flour would have prevented the development of spina bifida in most of these infants. The failure of the Dutch government and that of many other countries to require folic acid fortification remains a tragic policy error.1 When will European and other governments require this simple, safe, and inexpensive action? Folic acid fortification has been shown in several countries not only to prevent spina bifida, but also virtually to eliminate folate-deficiency anemia and to reduce serum concentrations of homocysteine, with likely reductions in deaths from strokes and heart attacks.2,3,4 I encourage all physicians to advocate forcefully for their governments to require folic 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 disease and disability that will continue to occur unnecessarily until mandatory folic acid fortification is implemented.
Godfrey P. Oakley, Jr., M.D.
Rollins School of Public Health of Emory University
Atlanta, GA 30322
gpoakley@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.
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.
American Heart Association. Folic acid fortification may have lowered stroke deaths. 2004. (Accessed May 12, 2005, at http://www.americanheart.org/presenter.jhtml?identifier=3019554.)
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.
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 hope of improvement.1 Jay did suffer. He suffered 26 surgeries and all of the indignities that follow from paralysis, incontinence, and bodily disfigurement. Moreover, like the rest of us, Jay never became fully self-sufficient.
Yet Jay bore his suffering with irrepressible hope and good humor that inspired and encouraged innumerable people who had the privilege of knowing him. When he died three days before his 14th birthday, 2000 people attended the funeral to celebrate Jay's uncommonly rich life. A passerby commented, "Someone important must have died."
With different parents, Jay could have qualified for the Groningen protocol. Doctors might have "performed a deliberate life-ending procedure"1 in Jay after making claims no mortal can sustain2 — that his prognosis was "certain," and his suffering was "hopeless and unbearable."1 Those of us who knew Jay are glad 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.
Koogler TK, Wilfond BS, Ross LF. Lethal language, lethal decisions. Hastings Cent Rep 2003;33:37-41.
Drs. Verhagen and Sauer reply: We agree with Oakley that folic acid fortification is important. However, it cannot prevent all abnormalities in newborns that cause unbearable suffering.
We cannot comment on Jay's case, described by Curlin, because we did not know him. He suffered, but according to Curlin, the suffering was acceptable. As we noted in our Perspective article, the role of the parents is paramount. Clearly, these parents were supportive, but the question is whether, without these parents, would the suffering have been bearable?
Murphy and Pritchard raise the issue that pediatric palliative care is not always accessible or adequate. They suggest that improvement in palliative care services could lead to a situation in which euthanasia in sick newborns would no longer be practiced. We agree that patients will certainly profit from improved access to palliative care. At the same time, we are convinced that euthanasia in patients with a hopeless prognosis and severe and sustained suffering, waiting for the "ideal" standard of care, can be acceptable. The Groningen protocol was designed to motivate physicians to adhere to the highest standards of decision making and to reduce hidden euthanasia by facilitating reporting. The protocol requires that all possible palliative measures be exhausted before euthanasia is performed. This requirement might do more in mobilizing the availability of palliative care services than the current situation of unreported practice.
The recommendations that Murphy and Pritchard refer to are a consensus statement of pediatricians in Europe.1 Sauer's personal view 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, the Netherlands
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.