We Cannot Accurately Predict the Extent of an Infant's Future Suffering: The Groningen Protocol is too Dangerous to Support

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  • This article was downloaded by: [Temple University Libraries]On: 20 November 2014, At: 01:04Publisher: RoutledgeInforma Ltd Registered in England and Wales Registered Number: 1072954 Registered office: Mortimer House,37-41 Mortimer Street, London W1T 3JH, UK

    The American Journal of BioethicsPublication details, including instructions for authors and subscription information:http://www.tandfonline.com/loi/uajb20

    We Cannot Accurately Predict the Extent of an Infant'sFuture Suffering: The Groningen Protocol is tooDangerous to SupportAlexander A. Kon aa University of California Davis , Sacramento, CAPublished online: 05 Dec 2008.

    To cite this article: Alexander A. Kon (2008) We Cannot Accurately Predict the Extent of an Infant's FutureSuffering: The Groningen Protocol is too Dangerous to Support, The American Journal of Bioethics, 8:11, 27-29, DOI:10.1080/15265160802513150

    To link to this article: http://dx.doi.org/10.1080/15265160802513150

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  • The American Journal of Bioethics, 8(11): 2735, 2008Copyright c Taylor & Francis Group, LLCISSN: 1526-5161 print / 1536-0075 onlineDOI: 10.1080/15265160802513150

    Open Peer Commentaries

    We Cannot Accurately Predict theExtent of an Infants Future Suffering:

    The Groningen Protocol is tooDangerous to Support

    Alexander A. Kon, University of California Davis, Sacramento, CA

    It is terrible to watch a child suffer. Like many others whocare for children in the intensive care unit (ICU), I have toooften witnessed what I considered to be intolerable suffer-ing. Watching a dying child undergo painful proceduresor anxiety-provoking interventions when there is no hopefor cure or even providing prolongation of life with symp-tom improvement can be unbearable for care providers andparents. When medical interventions merely prolong dy-ing and the care providers and parents agree that limitingor withdrawing life-prolonging measures is most consis-tent with the childs best interest, then doing so is appro-priate and well-accepted. Indeed, most children who diein United States hospitals do so after life-prolonging in-terventions have been limited or withdrawn (Garros et al.2003).

    Also troubling to healthcare providers is performing in-vasive life-prolonging procedures on a child who is deemedto have no reasonable chance for a meaningful life. Althoughless well published, I have often heard physicians, nurses,and others in the ICU question whether it is reasonable toperform cardiac surgery on a child with severe chromoso-mal abnormalities, place a tracheostomy and surgical feed-ing tube in a child with profound neurodevelopmental de-lay, or even correct a tracheoesophageal fistula in a childwith trisomy 21 (as was the question in the famed BabyDoe case). In such cases providers, and at times parents,question the appropriateness of invasive life-prolonging in-terventions.

    The Groningen Protocol, however, goes one step furtherand creates a system whereby healthcare providers andparents may choose to terminate the life of a child basedon the judgment that the childs future quality of life is solow that death is a better option than life. Like Jotkowitzand colleagues (Jotkowitz et al. 23), it is clear to me thatthe Dutch protocol has been used, and is meant to be used,solely for infants who are not terminally ill (Verhagen et al.

    Address correspondence to Alexander A. Kon, Associate Professor of Pediatrics and Bioethics, University of California Davis, 2516Stockton Boulevard, Sacramento, CA 95817. E-mail: aakon@ucdavis.edu

    2005, Verhagen 2006, Verhagen and Sauer 2005). AlthoughManninen has argued that in some sense these childrenare terminally ill (Manninen 2006), because all children forwhom the protocol has been employed had spina bifida, anon-terminal illness, and Verhagen et al. clearly articulatethat the protocol is intended for non-terminally ill infants,it cannot be reasonably argued that the protocol coversdying children.

    Although significant debate remains as to the ethicalpermissibility of voluntary active euthanasia (VAE) for adultpatients, I will assume for this essay that VAE is ethically per-missible. This assumption is not based on any notion thatthis debate has been resolved or that the arguments againstVAE lack adequate foundation. Rather, I assume the per-missibility of VAE because it seems impossible to justify theGroningen Protocol if one does not accept the permissibilityof VAE. I argue, however, that even if one accepts as permis-sible VAE, the Groningen Protocol cannot be supported.

    Because infants cannot express their wishes, and indeedcannot even conceive of wishes or judge what they believe tobe in their best interest, decisions for neonates must be madeby surrogate decision-makers. By choosing to euthanize theinfant, parents and providers are therefore making a deci-sion that it is in the infants best interest to be euthanized.That is, they are deciding that the burdens of the infantssuffering outweigh the benefits of being alive, and thereforeshe would be better off dead than alive. Or, to put it anotherway, they judge that the infants suffering is unbearable.

    It has been well documented that many patients suffertremendously at the end of life (Quill and Cassel 2003). Wemay therefore extrapolate that some patients not in the dy-ing process also suffer tremendously. Some of these patientsmay indeed find their suffering to be unbearable, and maybelieve that death is a better option than life. For these pa-tients, it may be that VAE is permissible because the patienthimself or herself has weighed the benefits and burdens

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    of life, and has determined that on balance the burdens ofliving with unbearable suffering outweigh the benefits ofbeing alive. If some adult patients suffer so greatly that theybelieve that they would be better off dead than alive, thanwe may assume that for some children and infants withunbearable suffering it could be in their best interest to beeuthanized.

    The question we must answer under the Groningen Pro-tocol is: Is this babys suffering unbearable and will her fu-ture suffering be so great that it is in her best interest tohave her life terminated? Suffering is inherently subjective.While we may be able to assess an infants pain, anxiety, ordiscomfort, we cannot know the infants perception of herpain, anxiety, or discomfort. Since the key question is notwhether the patient is suffering but rather whether the pa-tient is suffering unbearably, we can never be certain of ouranswer (Kon 2007).

    As I have discussed elsewhere, there are many stud-ies demonstrating that healthcare providers, parents, andthe general public overestimate the burdens of living witha disability (Kon 2007). Indeed, many people who believethat they would never want to live with serious disability(e.g., quadriplegia) later believe that their life is fulfillingand very much worth living when faced with the reality oflife with disability. Further, studies have demonstrated thateven close family members and spouses are poor judges ofthe end of life choices of patients. These findings underscorethe dangers of allowing others to decide when a patientssuffering is unbearable. Even if one concedes that for somesmall number of children it may be in their best interest tobe euthanized, given the overwhelming data demonstratingthat we (parents, healthcare providers, and the general pub-lic) overestimate the burdens of living with a disability andgenerally undervalue the lives of persons with disabilities,we cannot support a system in which we make decisionsregarding the unbearableness of the suffering of an infant.Based on these data, it is clear that if we accept the Gronin-gen Protocol we would condemn to death many infantswhose suffering is real but bearable.

    Further, it seems impossible to adequately separate theparents suffering from the suffering of the infant when mak-ing such a decision. Indeed, when employing the GroningenProtocol, physicians often administer a paralytic agent to theinfant (Catlin and Novakovich 2008). Such an act cannot begrounded in the childs best interest since paralyzing the in-fant can only increase, not decrease, her suffering. Paralyticagents are used to make the death more palatable for theparents (Catlin and Novakovich 2008), and any act of termi-nating the life of an infant that employs interventions meantspecifically to relieve the unease of someone other than thepatient is unsupportable. If the sole objective is to act in thebest interest of the infant, then there is no role for the use ofparalytic agents.

    It would seem that we are faced with a true ethicaldilemma. On the one hand, if we use the Groningen Pro-tocol to euthanize infants when we believe that their suf-fering is unbearable, we will certainly terminate the livesof some infants whose suffering is great but not unbear-

    able. For these infants the benefits of being alive outweighthe burdens of their suffering, and in such cases one cannotclassify the termination of life as euthanasia. Rather, in thesecases terminating the childs life is simply killing (Kon 2007).On the other hand, if we continue the status quo and vieweuthanizing an infant as impermissible, we run the risk ofcondemning some infants to a life of unbearable suffering.Neither option is ideal, but which is more consistent withthe tenets of medical practice? One of the fundamental prin-ciples of medicine is above all else, do no harm. Killing aninfant for whom the benefits of living outweigh the burdensof her suffering may be the greatest harm a physician couldever inflict on a patient, and therefore we should not sup-port any system that would allow this to occur. Therefore,on balance, we must not accept any protocol to actively ter-minate the life of an infant, particularly one who is neitherdying nor terminally ill.

    Perhaps the best solution, if one believes that VAE isever permissible, is to provide infants who are not termi-nally ill with the best medical care possible. Support themfully and work diligently to minimize their suffering. Asthese infants grow into toddlers, then children, and even-tually into adolescents, they will be increasingly able to as-sess their own suffering and communicate with parents andhealthcare providers. If, as a child grows, she believes thather suffering is unbearable and she has decisional capacity(even if she lacks legal authority to consent), VAE may bepermissible. If a child has such severe neurocognitive im-pairment that she lacks the ability to assess her own levelof suffering, weigh the benefits and burdens of her life, andcommunicate that assessment, then it remains impermissi-ble to terminate her life. While watching a child suffer maybe unbearable for parents and healthcare providers, we can-not be certain that the child herself perceives the sufferingas unbearable. Without a patient communicating her ownsubjective experience, actively terminating a childs life isnot appropriate.

    REFERENCES

    Catlin, A., and Novakovich, R. 2008. The Groningen Protocol: Whatis it, how do the Dutch use it, and do we use it here? Pediatric Nursing34(3): 24751.

    Garros, D., Rosychuk, R. J. and Cox, P. N. 2003. Circumstances sur-rounding end of life in a pediatric intensive care unit. Pediatrics112(5): e371.

    Jotkowitz, A. B., Glick, S., and Gesundheit, B. 2008. A caseagainst justified non-voluntary active euthanasia. American Journalof Bioethics 8(11): 2326.

    Kon, A. A. 2007. Neonatal euthanasia is unsupportable: the Gronin-gen protocol should be abandoned. Theoretical Medicine and Bioethics28(5): 453463.

    Manninen, B. A. 2006. A case for justified non-voluntary active eu-thanasia: exploring the ethics of the Groningen Protocol. Journal ofMedical Ethics 32(11): 643651.

    Quill, T. E., and Cassel, C. K. 2003. Professional organiza-tions position statements on physician-assisted suicide: A case

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    for studied neutrality. Annals of Internal Medicine 138(3): 208211.

    Verhagen, A. A., Sol, J. J., Brouwer, O. F., and Sauer, P. J.. 2005. Delib-erate termination of life in newborns in The Netherlands; review ofall 22 reported cases between 1997 and 2004. Nederlands TijdschriftVoor Geneeskunde 149(4): 183188.

    Verhagen, E. 2006. End of life decisions in newborns in The Nether-lands: Medical and legal aspects of the Groningen Protocol. MedicalLaw 25(2): 399407.

    Verhagen, E., and Sauer, P. J. 2005. The Groningen protocoleuthanasia in severely ill newborns. New England Journal of Medicine352(10): 95962.

    A Case Against Something That Is Notthe Case: The Groningen Protocol andthe Moral Principle of Non-MaleficenceMartine C. de Vries, Leiden University Medical Center, Leiden, The NetherlandsA. A. Eduard Verhagen, University Medical Center Groningen, Groningen, The

    Netherlands

    Discussions about the initiation and continuation of treat-ment in newborns with serious medical conditions are oneof the most difficult aspects of pediatric practice. Althoughtechnological developments have provided tools for dealingwith many consequences of congenital anomalies and pre-mature birth, decisions regarding when to start and whento withhold treatment in individual cases remain very diffi-cult to make. Even more difficult are the decisions regardingstabile newborns who have se...