Rights, best interests, and perpetuating tragedy.
Background
On November 14th Justice Gethin Edward ruled in a Brantford Ontario court that the parents of an 11 year old Native girl had the right to seek traditional therapies for her acute lymphoblastic leukemia. The girl "JJ" had started chemotherapy in August but had been removed from treatment by her mother ten days into the treatment. The health care team had approached the Brant Children's Aid Society to intervene on behalf of the child. They argued that removing the child from treatment (a treatment that is 90% successful in treating this otherwise fatal illness) constituted medical neglect and that therefore, the child was in need of protection. Brant CAS investigated and declined to intervene on the grounds that the child was part of a loving family trying to do the best they could for their child. The child was not, therefore, in need of protection. Many organizations would leave things there, it is after all the CAS mandate to promote the best interests of children, and hospitals frequently defer to their authority. But McMaster Children's Hospital took the CAS to court. Good for them in pursuing what they thought was right.
The obligation to protect
So let's unpack the story – what is going on here? We, the broader community, Canadian society have a moral obligation to protect the most vulnerable members of our community. We have to be prepared to step in to prevent abuse and neglect, and for children we have an entire system of child welfare authorities. In many respects this is uncontroversial, there is a legislated obligation on professionals and those with authority to report to Children's Aid Societies suspected cases of abuse or neglect. There is a moral obligation on anyone to do the same thing. While we generally respect parental authority over most aspects of a child's life there are some things parents cannot do – and some things they must do. So, to use obvious examples, one cannot beat one's child, nor can one fail to feed him or her. It is important to note that intention or beliefs are irrelevant here. The parent may genuinely believe that it is in the child's best interest to be beaten with a stick, that belief may have a religious foundation (spare the rod and spoil the child – a phrase coined from Proverbs 13 v 24.) or not, it does not matter, one cannot beat one's child. (Section 43 of the Criminal Code notwithstanding.) Similarly, on the positive side, one cannot fail to feed or otherwise fail to provide the necessaries of life for one's child. (Criminal Code 215. (1))
Medical neglect and substitute decision-making for children
In health care the issue of "neglect" arises around seeking and accepting standard health care for children. The Health Care Consent Act (Ontario 1996) dictates that there is no treatment without consent (with minor exceptions not relevant to this discussion.) If the person concerned (the patient) is "incapable" of consenting to the treatment then a substitute decision-maker needs to consent for the treatment to proceed. (In Ontario there is no "age of consent" to health care treatments. If the patient can understand and appreciate the decision he or she is required to make then that person is "capable" of consenting (or refusing) him or her self. It is the responsibility of the health care provider proposing the treatment to determine if the patient is "capable" of consenting. In practice, children under the age of about 12 are frequently assumed not to be capable of consenting to treatment (unless they show evidence that they are) and young people over the age of 16 are generally assumed to be capable of consenting – unless they show evidence that they are not. Children 12-15 need to be evaluated on a case –by-case basis having regard to the nature of the treatment being proposed and the person's ability to understand and appreciate the decision.
So what happens if a substitute decision-maker refuses a treatment that the health care team believes is necessary for the well-being of the child? The obligation is on the health care team to notify Children's Aid. (This is exactly what occurred in the case of JJ.) In many cases Children's Aid would then step in and, if the treatment was deemed to be in the best interests of the child would consent to the treatment. This has occurred on several occasions concerning children of Jehovah's Witness parents who needed blood transfusions. The reasoning is that refusal of simple life-sustaining treatment would constitute medical neglect and parents are not permitted to medically neglect their children to death. And this is so whatever the parents' reasons for doing so – religious, cultural, idiosyncratic or whatever.
There are, of course, devils lurking in the details. One perennial issue concerns the capacity of the child to make the decision. Even a young child who has gone through repeated episodes of onerous treatment may be the very best person to decide about continuing care, and conversely an older child brought up to be highly dependent on parental views and opinions, may not. Each case really must be carefully evaluated on its merits, with appropriate humility about such fuzzy concepts as "capacity" "understanding" and "appreciation" and indeed" best interests." And indeed it is within the concept "best-interests" that another devil lurks.
A child's best interests
When a substitute decision-maker makes a decision on behalf of a child (and this applies to a child's parents too) the decision must be in the child's best interests. This is importantly different from the situation for a substitute decision-maker making a decision on behalf of an adult who was previously capable but is now incapable. For a previously capable adult the obligation for the substitute decision-maker is to follow the previously expressed wishes of the patient. For adults who had previously been capable the concept of "best interests" only applies if there are no previously expressed wishes that might be relevant to the situation at hand. Even in this case the concept of "best interests" is framed in the context of the patient's lived values and way of life. This means that any person's best interests is intrinsically and essentially tied to that individual. This notion of best interests can be thought of as subjective – dependent on the particularities of the person concerned. That is, there is no external, objective, measure of "best interests" that can be applied to all persons. But, of course, we are dealing with the best interests of children, children who have never been in a position to develop their own values and to choose their own way of life. The substitute decision-maker must therefore stand on the outside and try, as objectively as possible, to assess that child's lived experience, now and into the future. This is excruciatingly difficult, especially when the parents disagree with the health care team, and particularly when overriding the parent's decision may have the effect of requiring that child to come out of his or her community. Go back to the example of a blood transfusion for a child of Jehovah's Witness parents. If the parents refuse a needed blood transfusion (on the grounds that a transfusion would cause irreparable harm to the child's immortal soul) and child welfare authorities step in to authorize the treatment, that could have the effect of removing the child from his or her family and community. The result could be ostracism and estrangement. Certainly that child's life would be saved and extended, but at great cost. So far we have been using the example of blood transfusion – which is a simple procedure with potentially life-saving benefits and no appreciable side effects. What about treatments that carry terrible side effects, or which do not restore the child to full health, or which require other life-long interventions? The assessment of a child's best interests can be brutally difficult and can impose a grave moral burden on all involved, but not attempting to assess the child's best interests in these sorts of situations is not an option either. If those around a child throw up their hands and say – "We cannot know what it is to live life as another person – we cannot get inside another's feeling s to know what life is or would be like – we just cannot tell." Then that too is making a decision—a decision to continue the status quo, whatever that might be.
Back to JJ's story. When she was taken out of chemotherapy Brant Children's Aid was notified. They apparently did an investigation and determined that the child was not in need of protection. That is they were not prepared to step in and override the decision of the parents and authorize treatment. Their reasoning has not been made public. But if child welfare authorities are charged with protecting the interests of children their decision at some level must have been that it was not clearly in JJ's best interests to have continued treatment. It would be very interesting to know Brant CAS's thought process here but that will have to remain confidential.
McMaster Children's Hospital believed that the Brant CAS had failed in its obligation to protect JJ and so took the CAS to Court to attempt to force it to intervene.
Aboriginal rights and traditional healing
Justice Edward ruled that Section 35 of the Constitution Act of 1982 gave JJ's parents a constitutionally protected right to seek traditional healing. Section 35 says: "The existing aboriginal and treaty rights of the aboriginal peoples of Canada are hereby recognized and affirmed." This section of the Act has been subject to a great deal of interpretation. Justice Edward ruled that the native healing practices were an integral part of native culture and had existed before European contact. Those practices were therefore constitutionally protected and JJ's parents were entitled to pursue those practices on JJ's behalf.
" It is this court's conclusion, therefore that DH's decision (JJ's mother) to pursue traditional medicine for her daughter , J.J. is her aboriginal right. Further, such a right cannot be qualified as a right only if it is proven to work by employing the Western medical paradigm. To do so would be to leave open the opportunity to perpetually erode aboriginal rights." (Quoted in Globe and Mail Nov 15th page A20)
The significance of this judgment
This judgment is highly significant for a number of reasons. The first is that it will most likely have the result of condemning JJ to death. DH can, of course, still seek Western medical treatment for JJ, but delay makes that treatment less likely to be effective. By the time that treatment is sought – if it is, it may simply be too late. Second, an aboriginal right to pursue traditional treatments is a precedent setting interpretation of aboriginal rights. Third, this right to seek traditional treatment cannot be limited by evidence. Fourth, this decision was made not on the basis of the child's best interests, but rather on the basis of a right of the parents.
Native traditional medicine and the Western medical paradigm
Let's look at three and four. Western medicine – in its foundation and at its best, is evidence based. And the "evidence" we are talking about is the evidence generated by science. Western scientific method is concerned with identifying the causal relationships between events in the natural world. Science is our method of saying true things about the natural world. Of course there are limitations. In health care the scientific method stands accused of atomizing persons – turning complex interrelated biological and mental entities into a series of diseases and disease processes. And there are other ways of saying true things about the world than just science. However, science and Western medicine has been stunningly effective in treating and indeed eradicating many diseases. Before European contact little JJ, as a young native girl with her disease, would have died. In fact, just fifty years ago JJ anywhere would have died. It is a triumph of science and Western medicine that she does not need to die today. Judge Edward's point – in general, is that rights are not subject to reason. This is as it should be. If I have a right I can exercise that right as an entitlement, not subject to your evaluation of my reasons or my good sense. In health care, if I am capable of making my own decisions, I am entitled (I have a right) to refuse treatments. That right is not subject to me having good reasons for exercising the right. I'm just entitled. Similarly in this case. JJ's parents are entitled to exercise their aboriginal right to pursue traditional remedies. The fact that there is no evidence to believe that those remedies will work for JJ is irrelevant. They are just entitled.
I think there is more going on here too. We are talking not just about rights in general but an aboriginal right to pursue "traditional medicine." Traditional medicine is here being held up as equivalent to the "Western medical paradigm." They are being treated as equivalent methods of doing the same thing. The Western medical paradigm, indeed Western science is a world view, a way of conceptualizing the natural world around us, and a way of problem solving in that world. There are other ways of seeing the world and other approaches to problem solving. We could consult oracles, or cast lots, or look to the stars or spirits for guidance. Maybe it is a failure of my own imagination or maybe I'm just too embedded in the scientific paradigm, or perhaps I am seduced by the success of that model, but I cannot comprehend how an alternative model that operates without evidence – or indeed contrary to evidence can make sense as an intelligible problem solving method. (Of course there is much, much more that could be said here. Not all problems are scientific problems – "What should I do?" is a moral question whose answer will not be found by applying a scientific method. And, yes, I am partly begging the question in the way I use "evidence." And certainly, to the extent that science predisposes us to "use" or exploit the world around us rather than embedding us as part of our environment, science is problematic, but science works – and it self-corrects.) I worry that when "alternative" models are presented as exactly that – alternatives – that can be substituted for something thought to be equivalent we are merrily marching on the road to unreason and incoherence.
Parental rights and a child's best interests
JJ's parents' aboriginal right to pursue traditional healing methods trumps JJ's right to have her best interests considered. The question of whether JJ would be better off pursuing traditional healing methods or undergoing chemotherapy does not arise, as her parents are just entitled to make the choice for her. Of course, they want the best for her, and they may well genuinely believe that their actions are in her best interests, but as Justice Edward pointed out they do not need to consider the "evidence," of the natural and almost always fatal course of the disease or the success of treatment, produced by the Western medical paradigm. Her best interests are whatever her parents' say they are. This is contrary to our practice for every other child in every other non-native community in Canada.
The legacy of colonialism and residential schools
Is JJ paying the price for the legacy of colonialism, for the sins of residential schools? Canada has a sorry and tragic history of removing native children from their communities, thus destroying lives, families, communities and ways of life. Maybe, somewhere at the bottom of that awful practice was the belief that somehow those children would be better off stripped of their families, their languages and their cultural heritage and educated or re-educated to participate in the modern world. Even if there were good intentions somewhere buried in the background the execution and the effects have been tragic. Because we must not, cannot, repeat the sins of the past we are perhaps doomed to sacrifice children like JJ. We have been so horribly wrong in our evaluation of children's best interests in our treatment of native children we must now show respect by refraining from stepping in to impose our view. And that is so even if JJ would be better off with chemotherapy.
One final word. By the time things get to the courts the game is lost. Courts are adversarial, there are winners and losers. JJ needed her treatment team and her parents and her community to work together to support her through a harrowing treatment regime to the hoped for outcome of a rich, long and vibrant life. Things seemed to have started off like that, but then the train went off the rails. And that is part of the tragedy too. We have to do a better job of building trusting and effective relationships between all patients and their families and their treatment teams, as we work towards genuinely shared goals.
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