The pain of watching children dieThe father of an 11-year-old Canadian boy with leukemia wants to stop his painful treatment. The doctors say No. Who’s right?
The right of parents to decide on medical treatment for their children flows from a presumption that they will act in their children's "best interests". Parents have an obligation to provide their children with the necessities of life, which include the medical treatment needed to protect their lives and health. For a variety of reasons, however, parents can refuse treatment for their children that medical professionals and others regard as essential. The right to refuse treatment for one's child is narrower than if the parents were deciding for themselves -- competent adults have an almost absolute right to refuse, which is much broader than what they can refuse for their child. It's been reported the young boy has also refused treatment. Whether that refusal is legally valid depends on his capacity to provide an informed refusal -- the flip side of an informed consent. A valid informed consent or refusal requires the person to be competent and informed, and their decision voluntary. Competence is often in doubt with children's own treatment decisions. In judging competence, courts take into account the child's age, experience and intelligence; independence from their parents; and the reasons they give for refusing the treatment. Courts have increasingly found mature minors competent to decide about treatment, but that is highly unlikely with an 11-year-old. Ethically, however, the child's wishes should still be taken into account. When, as in this case, there is an irresolvable conflict about treatment between parents and doctors -- unless the situation is an emergency -- a court order is required. In deciding whether to take decision-making power away from the parents, courts look at the nature of the illness from which the child suffers and whether or not it is life-threatening, how likely treatment is to be effective, and the suffering the treatment involves. Under child-welfare legislation, to displace his parents as decision-makers, the court must first find that he is neglected or abused and in need of protection. Failure to provide a child with necessary medical care, when this endangers the child's life or health, is child neglect within the statute of the province of Ontario. Such a finding is devastating to loving, caring parents and adds to their distress and trauma -- they feel as though they are David facing Goliath. We have ethical obligations to try to reduce their suffering, and one possibility would be a special provision in child-welfare legislation to allow intervention in these cases without needing to find the parents guilty of neglect. As well, even when a court or child-welfare agency is ethically justified in interfering with the parents' decisions, it has obligations to do the least harm possible. In the past, courts sometimes made the treatment decision themselves, usually by endorsing the doctors' recommendations, or they gave decision-making power to the doctors. More recently, they tend to name a person -- frequently a child-welfare authority or, in one case, the Saskatchewan Minister of Social Services, or sometimes another relative of the child - to replace the parents as the decision-makers. Moreover, in the past, courts took away all decision-making power from parents. Today, they tend to take away only the right to decide on medical treatment -- as shown in the Vancouver sextuplets case, in which blood transfusions were ordered despite the parents' refusal -- and only for as long as is necessary to give the child treatment. That implements the ethical principle of using the least harmful, least restrictive and least intrusive means reasonably available to deal with situations in which we, as a society, have ethical and legal obligations to intervene to protect children, but, in doing so, harm the parents. That principle also means that imposed treatment should be the least harmful, least restrictive and least intrusive it is feasible to use. The other side of the coin is our ethical obligation not to be over-interventionist when this would inflict serious suffering that is not compensated for by the promise of adequate benefits. This can sometimes happen in treating children dying of cancer. Some parents want all possible treatments, including experimental ones, for their dying child. I have had immensely distressed nurses contact me about such cases, describing the treatment as "torturing the child". It is extremely difficult to accept that there is nothing that we can do to prevent a child dying. This can cause us to lose a proper perspective on the suffering/benefit ratio of the treatment given to the child -- or even of that we choose not to give. Research has shown that children dying of cancer receive inadequate treatment for pain or other symptoms of serious physical distress -- such as breathlessness or vomiting -- because of fear that the treatment could "harm" them. These conflict-over-treatment cases are almost always very hard to call and good facts -- which, as the public, we don't have in this boy's case, at present -- are essential to good ethics and law. But in fulfilling our obligations as a society to protect this child, we should err on the side of giving him the best chance at life. Margaret Somerville is founding director of the Centre for Medicine, Ethics and Law at McGill University in Montreal. |
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Decisions about medical treatment for critically ill children open up a world of competing sorrows. The case of
Comments (5)
Bernadette said...Nice article.
United States | Friday, 16 May 2008 at 6:22 pm
Herman Pitts said...The irony to all this is that there is a gentlemen, Rick Simpson of Maccan, Nova Scotia, who has developed an alternative cure for cancer that seems to be quite robust as he has induced complete remissions, documented by attending physicians, in several cases.
The Canadian authorities responded by locking him up!
His plight is well detailed on the web at http://www.geocities.com/runfromthecure.
Big Pharma Uber Alles.
United States | Saturday, 17 May 2008 at 11:46 pm
Louise Brosnan said...I’ve had many relatives with cancer including leukemia and am widely read and experienced on the matter.The debate at hand disguises the real issue and that is the questionable effectiveness of the main stream medical approach to cancer. Cancer is in essence a nutritional deficiency disease brought on by factors including poor nutrition, toxicity and emotional and physical stresses. Each individual reacts differently to these and the outcomes are different - different “types” of cancer or chronic illness eg diabetes, MS, arthritis, heart disease. One thing is very clear, cancer is not caused by an absence of chemotherapy or radiotherapy etc. There is ample evidence that these interventions are useful in only certain extreme cases and otherwise do far more harm than good. This is why many people including parents seriously object to them.
Cancer is however big business. Pharmaceutical companies, charities, and many livelihoods are dependent on the main stream medical approach to cancer. To adopt alternative approaches - many of which have clinical trials to support their efficacy, safety and lack of toxicity (eg Ukrain, Ribbrax) and are used with success and frequency in places like Japan and Europe means to admit that existing approaches do not work and are in fact harmful(or lethal)and puts at risk the big business described.
There are many sources of information to support this - just start with Dr Ralph Moss’s book on Questioning Chemotherapy and study the work of Dr Mercola as basic ways to obtain an understanding of what the average person is dealing with in the face of major conflicts of interest on this issue.
Unfortunately, children and parents like that shown in this article become pawns in a battle that has nothing to do with whether their child lives or dies and everything to do with the control by big pharma et al of lucrative markets for treatments. God forbid any one question modern medicines rights to dictate what treatment any one receives!
Australia | Monday, 19 May 2008 at 4:28 pm
Nike Ramos said...Terminally ill patients who decide to forego chemotherapy treatment should at least be given Pain Management. Pallative Care. Filipinos are good at that.
Philippines | Monday, 19 May 2008 at 6:18 pm
J. Wesley Rees said...As a parent, it is painful to read about this case. And it is helpful to have the input and experience of someone of the calibre of Professor Somerville who, it seems, also struggles with the (mainly) ethical issues which the case appears to disclose.
There is no doubt that we are not apprised of all the information around the case, nor should we be. But from what has been published, it appears that the resort to law to effect a treatment that offers no better than a 50:50 chance of improvement is frightening. There is no physician, no matter how expert, who can reasonably predict, for a given patient, what the specific response to any particular treatment mode may be. That there was a reported response to chemotherapy in the past is not necessarily indicative of any similar future response. There may be no response at all in which case forcing the treatment on a repeatedly unwilling patient sounds like assault, rather than help. The medical professionals appear to have resorted to invoking the weight of the State to force a painful treatment on a patently unwilling patient that their own evidence suggests was not likely better than the toss of a coin. In Canada, in a large institution of learning and alleged treatment excellence. All the decisionmakers involved here need to take another look at how this can possibly happen. While medical practitioners are properly applauded for pushing the boundaries of science in the pursuit of improving the human condition, in sickness and in health, it really is to this correspondent quite shocking that patients and next-of-kin can be apparently so readily set aside to make a highly questionable point. So much for oaths to Greek philosophers. What a pity that given the less than convincing efficacy of the physician-preferred treatment option there does not appear to have been given equal weight to adverse symptom controls and a palliative exit from this world.
Canada | Tuesday, 20 May 2008 at 8:06 am
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