A Conundrum For Medical Practitioners?

Religious Faith Vs. Informed Consent September 25, 2002

At one time, teenagers had little or no say in their medical treatment. Instead, decisions were made by consultation with doctors and parents, and teens had to accept whatever treatment was prescribed by a paternalistic medical system.

Recently, however, more doctors allow mature teens to make informed medical decisions, often without the input of their parents. Doctors feel that this is a necessary and important step if they are to encourage teens to “trust their physicians to keep their confidences, particularly in matters such as abortion, birth control, impotence and pregnancy [Canadian Press, 2002].”

Today, a battle is being taken to the supreme court by lawyers and physicians who insist that the Alberta courts have created confusion in the medical profession by their decision to force an Alberta teen to accept blood transfusions despite “the fact that five doctors at the Alberta Children’s Hospital : interviewed her and found her to be mature enough to decide her own medical treatment.” Bethany Hughes and her mother were members of the Jehovah’s Witness church, which claims that the bible prohibits blood transfusions. Bethany suffered from a form a leukemia which is often curable by treatments that include transfusions.

On the surface, it does appear that the Alberta courts have squashed the rights of teens to make their own medical decisions. At least this is the claim of Bethany’s lawyers, who are carrying on her fight subsequent to the girl’s death two weeks ago at the age of 17.

However, this is not necessarily the case. The understanding amongst medical ethicists, physicians and the courts, is that teens are capable of making treatment decisions on their own – of giving informed consent – if they are found to be mature and capable of understanding the ramifications of their decisions. They key term here, is “?on their own.’ Bethany was found to be a very intelligent and mature teen by all of her physicians, but there is no evidence that she was making her own decisions.

Bethany’s refusal of blood transfusions – a move that probably led to her death – was based on the teachings of her religion, and her religious mother. There is much evidence that the JW church was very directly involved in Bethany’s medical treatment, and that church members, along with her mother, may have put considerable pressure on the girl. This is evidenced by the fact that the girl was removed from her home and her father – who fought to have the courts force Bethany to receive transfusions – and sequestered by church members in Edmonton.

Would the courts have been supporting teens’ rights to choose treatment if they had allowed Bethany to decline necessary medical intervention in light of the pressures that were on the girl to comply with church wishes? When is religious council merely council, and when is it an attempt to control the patient? This is a significant question when the patient is only 17.

The question this case brings to the forefront regards the nature of faith. At what point is faith a mature, rational decision, and when is it an example of childish reliance on what the parents teach?

A 5-year-old child may have a deep and unyielding faith in Santa Claus or the tooth fairy if his parents tell him that they are real. At the age of five, is religious belief any different?

Sometimes cartoons can say things with a clarity that adult programs cannot even approach. Consider a recent episode of South Park [Matt Stone and Trey Parker, South Park, episode 402 – The Tooth Fairy’s Tats 2000, Comedy Central] in which this exchange occurred between a Jewish child and his father:

Dad, there is so a tooth fairy, huh?
What, oh: Kyle, let’s have a little talk:
Oh my God, you DID lie to me!
No, Kyle, she’s just make believe, like Peter Pan.
Peter Pan too!?
Kyle, :
What about Moses and Abraham?
Well, they were probably real:

Is Moses real? An absurd question? To a faithful adult, perhaps, but to a child who has just lost his faith in one mystical figure, why not? Children are genetically programmed to believe what their parents teach them. They learn to forge their own beliefs by first taking on the beliefs of the parent and experimenting with them. Children must accept everything their parents say as true because they are not mature enough to make rational decisions on their own. Imagine if children never believed their parents when they were told that something is dangerous?

Later, children grow up and start to develop their own belief system. The teen years are a time of testing – when new beliefs are taken on and practiced with amazing fervor. Over time, a number of belief systems might be “?tried on’ until the teen finds something that fits. It is not considered psychologically healthy for an adult to take on, wholesale, the belief system of the parents, as this indicates a lack of individuality – a personality crisis.

So how does this apply to Bethany? No one can say for certain. There is no question that in very young children, faith is taught. Most people also accept that in adults, faith is a matter of choice, and should be respected. The real question is, what was the nature of Bethany’s faith? At the age of 17, was she sufficiently mature to make the decision to submit to the teachings of her religion, even when it risked her death? I’d like to believe that she had the chanced to examine her faith, and come to these conclusions on her own, but the intense involvement of her church in her medical treatment leads me to believe that she had not yet had the opportunity to question her faith. Did the members of her church ever tell her that she had the choice to think differently than they?

Bethany’s convictions to refuse treatment seemed to be very strong, but then imagine her fear as she faced death, and was told by her church that [http://www.watchtower.org/library/hb/] her best treatment option was a sin against God. If she might die, did she want to risk offending God?

Perhaps her church is right and blood transfusions are sinful, but it is significant that no other popular North American religion holds this belief. Also, the evidence that the JW’s present to support this belief is very scant on a spiritual level. Instead, most of their rhetoric against blood transfusions has been carefully and selectively quoted from mostly outdated medical reports which indicate, among other things, that transfusions “may result in acute [kidney] failure, shock, intravascular coagulation, and even death,” and that recipients of blood may be infected with diseases,” such as syphilis, cytomegalovirus infection, and malaria:herpes virus infections, infectious mononucleosis (Epstein-Barr virus), toxoplasmosis, trypanosomiasis [African sleeping sickness and Chagas’ disease], leishmaniasis, brucellosis [undulant fever], typhus, filariasis, measles, salmonellosis, and Colorado tick fever.”

Finally, consider this quote from their website: “According to U.S.News & World Report (May 1, 1989), about 5 percent of those given blood in the United States get hepatitis”?175,000 people a year. About half become chronic carriers, and at least 1 in 5 develop cirrhosis or cancer of the liver. It is estimated that 4,000 die. Imagine the headlines you would read if a jumbo jet crashed, killing all aboard. But 4,000 deaths amount to a full jumbo jet crashing every month!”

If the JW prohibition against blood transfusions is a spiritual matter, what is the possible relevance of these reports? Theologically speaking, even if transfusions were perfectly safe, if they are a sin, this should not matter. I’m not convinced that the Jehovah’s Witnesses themselves are certain of the spiritual reasoning behind the prohibition, but people are dying for it nonetheless. If Bethany quoted such outdated reports to the courts as the basis for her refusing to accept blood, can you blame them for overruling her physicians and forcing her to accept treatment?

Bethany’s parents have both suffered a crushing loss, and this is a time when they need to support each other. Instead, they are both pursuing a divorce, and are legally at odds. One parent fought to save her child’s soul, the other, her life. Ironically, the involvement of the church in this harrowing family struggle, has put these two well-meaning parents at odds, and has torn a family apart. It would not have been conscionable for the courts to have allowed this girl to decide on her treatment, when such vehement forces were working to propel her in one direction. This is not a matter of religion, but a matter of personal choice to adhere, or not adhere, to a religious belief.

Bethany may have felt that she was capable of giving informed consent, but by whom was she most informed?

Canadian Press, 2002. Clarity encouraged: Court urged to settle confusion over Jehovah’s Witness case. See: http://www2.alberta.com/news/fs.cfm?source_id=&id=1188048

The Watchtower: Official Web Site of the Jehovah’s Witnesses. How Can Blood Save Your Life? See: http://www.watchtower.org/library/hb/

Tamra lives in Calgary with her husband and two cats. A fulltime AU student, she splits her free time between her duties as an AUSU councillor, writing her first novel, and editing written work by other students and friends.

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