Child Non-Voluntary WHEN QUALITY TRUMPS QUANTITY

JULIA GOYAL1 AND SALVATORE GIULIANO VIVONA2 1Bachelor of Science, Biology (Honours), Class of 2016. 2Bachelor of Science, Biophysics (Honours), Class of 2016 McMaster University Correspondence: [email protected] and [email protected]

You sit down on the chair Wolfe investigated parental accounts of symptoms suffered by the hospital bed of by children in the terminal stages of cancer. The results a young girl. The little revealed that 89% of children endured substantial suffering angel is no longer the girl from at least one symptom, with mostly ineffective you knew with her curious treatments, as shown in Figure 1.2 The ineffectiveness eyes, contagious laughter, of symptom treatments leads to a patient’s poor quality and sweet smile. She lies of life until . Euthanasia, however, is a promising there, as if she is dead. She has alternative as it provides an opportunity for to no recollection of who you are, relieve their patients from intractable suffering rather than where she is, or how she got here. prolong a painful dying process. You try to believe that the doctors are “doing everything they can” and Euthanasia should be given special consideration in it is only a matter of time. But pain, paediatrics, where and children who are terminally both hers and your own, consumes you. ill are unable to or are inept at giving legal consent to medical procedures. Legal protocols can provide a safe For decades, the medical community procedure for non-. For example, has debated how best to alleviate the the Groningen Protocol establishes criteria under which pain and suffering of patients while physicians in the can euthanize infants 3

opinion respecting moral values and judgement. without fear of prosecution. The protocol outlines four Throughout these years, the field of requirements: “The presence of hopeless and unbearable medicine has birthed new methods suffering and a very poor quality of life, parental consent, and technology to enhance palliative consultation with an independent and his or her care. However, at times, the patients’ agreement with the treating physicians, and the carrying conditions only worsen and the use of out of the procedure in accordance with the accepted treatments and medications are to no medical standards.”3 With regards to the first criterion, avail. In these circumstances, euthanasia it is important to recognize that verbally incapacitated provides an alternative solution to the children are unable to explicitly indicate their symptoms suffering of patients and their families. and communicate their suffering to physicians. Instead, Euthanasia is defined as “knowingly and physicians must try to determine the child’s level of intentionally performing an act that is suffering by observing vital signs and behaviour.3 The explicitly intended to end another person’s protocol enforces standards for non-voluntary euthanasia life.”1 It is currently legal in only eight that prioritize morality and the comfort of the patient jurisdictions around the globe. However, in late while providing legal protection for physicians. Its success 2013, Bill 52 by the Québec legislature proposed in the Netherlands indicates that can be to decriminalize euthanasia as a medical aid for authorized and well-accommodated without significant death. Not only has this initiated further debate legal and moral tension in a developed country that on the topic in Canada, but it may encourage other embodies Western cultural values. governments to consider implementing euthanasia. MORALITY AND DIGNITY This opinion piece discusses how legalizing euthanasia would serve the interests of the patient and healthcare system, with a particular focus on child euthanasia. Establishing a legal protocol for non-voluntary child euthanasia not only prioritizes morality and the comfort RELIEF FROM SUFFERING of the patient, but also protects a patient’s dignity. Terminally ill patients may experience an unimaginable Within the clinical setting, there are numerous cases degree of suffering.3 Without the option of euthanasia, MEDUCATOR | APRIL 2014 APRIL | MEDUCATOR where patients experience extreme discomfort caused by they are forced to spend their final moments in a state virtually untreatable illnesses. A 2000 study led by Joanne of severe deterioration. Their worsening state will 7 MEDUCATOR | APRIL 2014 opinion 8 : - - - - - 2 Consequently, Consequently, a

Diarrhea tion Piech CT. Daily cost of care unit an day: the contribution of me intensive chanical ventilation. Crit 2005; 33(6):1266-71. Care Med. Steer RA, Beck Beck AT, JS, Newman CF. Hopelessness, depression, suicidal ideation, and clinical diagnosis of de pression., Life Threat Behav.; 23(2); 139-45. Pruchno RA, SL. Potashnik Caregiving and health mental spouses: inphysical perspective. J Am Geriartr Soc.1989; 37(8):697-705. Emanuel DL, EJ, Fairclough, Slutsman J, Emanuel LL. nomic Understanding and other burdens eco of : the and experience their caregivers. Ann Intern of Med. 2000; 6(132): 451-459. patients Canadian Canadian Medical Association. Eutha nasia and Association; Medical Canadian [Internet]. Ottawa: 2007. [cited 2014 Jan 16]. Available from: http://policybase.cma.ca/dbtw- wpd/Policypdf/PD07-01.pdf. Wolfe J, Grier HE, Klar Ellenbogen N, JM, Salem-Schatz Levin S, et SB, al. and at the suffering Symptoms end of life in children with cancer. N Engl Med. 2000; 342(5): 326-33. J Verhagen E, Sauer PJ. The Groningen protocol: euthanasia in newborns. N Engl J severely Med. 2005; 352 ill (10): 959-62. Available from: http:// www.nejm.org/doi/full/10.1056/ NEJMp058026#t=article. The Nemours Foundation When your [Internet]. child’s in the Jan pediatric 2014 [cited in 2012 unit. care tensive 15]. Available from: http://kidshealth. org/parent/system/ill/picu.html#. Dasta JF, McLaughlin TP, Mody SH, onstipa 6. 7. 8. 1. 2. 3. 4. 5. C FIGURE 1: In children who showed who FIGURE showed 1: In children l d / sufferable sufferable symptoms, according to parental accounts., the percentages of successful symptom treatments Treatments to the most as relieve seldom successful, were symptoms effective treatments for pain 27% only respectively were and dyspnea and 16% effective. majority of patients were reported to have little fun and immense fear, appeared while 63% the of patients their parents. to distressed miting Vo Nausea e it eatment Successfu eatment Attempte eatment Loved 8 Tr Tr oor P Appet ■ spnea Dy in Pa CONCLUSION tigue Fa 0 0 50 10 socioeconomic, psychological, and emotional and emotional psychological, socioeconomic, are not enough to bridge not enough the are care palliative personal decision. The Groningen Protocol Protocol Groningen The decision. personal patient, preservation of dignity, and economic and economic preservation of dignity, patient, child of implementing the benefits pressures, understand that there is a difference between between is a difference understand that there by consensus and no longer regarded as a as regarded longer no and consensus by by their inability to meet the patient’s needs. their inability needs. by to meet the patient’s associated with sustaining the child. burdens burdens placed on the child’s family. the child’s on placed burdens moral equivalent to killing. It is important to moral equivalent to killing. medical system as the paediatric in field quantity, and life is no exception. and life is no exception. quantity, euthanasia should not be overlooked. Death is euthanasia should not be overlooked. will also allow euthanasia under regulations that can be adopted by other countries that can by be adopted the utility and performance of the Canadian that there are also great financial and social financial also great are that there is heightened this distress the child suffering; routine and structure, setting an example and structure, routine Authorizing in paediatrics. grounds reasonable from the Netherlands presents an effective an effective Netherlands the presents from allocation in the resource optimal for more be adopted day euthanasia should one now, keeping an individual alive and allowing him and allowing keeping an individual alive gap between the two. After all, quality trumps After all, the two. gap between government should not interfere should not government with such a well as in relieving loved ones from the from ones as in relieving loved well a private matter, and it can and it that the be argued a private matter, the world around to practice euthanasia on Canadian healthcare system. Though illegalThough system. healthcare Canadian Child euthanasia can play a role in optimizing Child euthanasia can a role play or her to truly live; medical technologyor her to truly live; and of care, but statistical analysis shown has of care, struggleones emotionally when they witness In consideringIn sufferingthe the of patient the of A hospitalized child requires a high degree a high degree A hospitalized child requires

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6 This is particularly true 7 The average daily average The forcost an 4 HEALTH ECONOMICS ECONOMICS HEALTH in feminist and law has centered on pregnancy. the and contract selection sex of regulation of and practices legal equality technologies, reproductive regarding in articles several which she published Dr. Dr. Elisabeth Gedge is the Chair of the Department of Philosophy at McMaster with in University interests research focus Her research philosophy. the the bioethics, feminist philosophy philosophy and religion, law, of of environmental REVIEWED BY DR. ELISABETH GEDGE REVIEWED supports child euthanasia is the allowance support for dignified a neither is sustenance should be defined such that it indiscriminately defined should be psychosocial stress. psychosocial placed in paediatric intensive care units, which care units, in paediatric intensive placed the highest level of medicalprovide care patients to suffer depression and other mental patients to suffer depression burden to the health care system, but is also to the health care system, burden both an individual and aggregate level. With level. both an individual and aggregate more economical to allocate the hospital bed, economical to allocatemore the hospital bed, morality and dignity. memories of them. This argument hence argument This memories them. of euthanasia may be a proper way of preserving way be a proper euthanasia may emphasizes the value of human life, thus emphasizesof human life, the value to the same level or infants entitling children child has personal dignity. Personal dignity Personal dignity. child has personal terminally ill patients experience increased terminal illnesses or medical conditions are terminal illnesses are or medical conditions this understanding, another argument that this understanding, to endure this experience such at to endure a young EDITED BY AVRILYNN DING | ART BY YASMEEN MANSOOR | ART BY YASMEEN DING EDITED BY AVRILYNN resource allocation maximizeto resource efficiency raises the question of whether a newborn of whether raises the question or for the close family and friends of the child. forclosethe family friendsand child. the of nurse, medication, and financial resources to resources and financial medication, nurse, for a better distribution of limited resources for a better distribution of limited resources nor desirable way to live the last days of one’s last days the of one’s to live nor desirable way health problems, depression symptoms, and symptoms, depression health problems, is still hope. However, the child in his or However, is still hope. her physical state is not only an economic insensitive and uncompassionate, as one can as one and uncompassionate, insensitive in a hospital. a in is $3,184, care unit bed in Canada intensive illnesses; a child should not have to be forced to be forced a child should not have illnesses; life. The loss of independence canThe loss of cause adult life. amounting to over $1 million a year. There are are There a year. $1 million amounting to over country. the 3,500 of these beds across around a source of emotional and physical strain of emotional a source argue that an infinitesimal chance of recoveryargue that an infinitesimal a child with a reasonable chance of recovery. a child with a reasonable amongst patients. Children suffering from suffering Children from patients. amongst and effectiveness in the healthcare system, on on system, in the healthcare and effectiveness age. Circumvention of the suffering of through Circumvention age. also occupy their friends’ and relatives’ last and relatives’ their friends’ occupy also on overlooking physicians and nursing staff. overlookingon and nursing staff. physicians of dignity as adults. For many, relying lifeon many, For of dignity as adults. Studies that primary show of caregivers Based on a cost-benefit analysis, it would be would it analysis, a cost-benefit Based on Health economics is the study of optimal of study the is economics Health An efficiency standpoint may appear efficiency standpoint may An Child Non-Voluntary Child Euthanasia WHEN QUALITY TRUMPS QUANTITY TRUMPS QUALITY WHEN