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September 9, 2013 | Posted By Marleen Eijkholt, PhD

Sarah is 10 years old and has cancer. She has lymphoblastic lymphoma, an aggressive form of non-Hodgkin lymphoma. News reports suggest that her parents and Sarah herself, decided to stop chemo treatment. “Sarah’s father said she begged her parents to stop the chemotherapy and they agreed after a great deal of prayer”. Sarah and her family are Amish. Reports note that they refused chemo because the side effects made Sarah horribly sick, and that she was worried about losing her fertility. They decided to use a doctor who would attempt to treat the cancer with natural medicines, like herbs and vitamins. 

Over the last couple of days, their court battle has been outlined in the media. The hospital, where Sarah had been treated with chemotherapy, had applied for limited guardianship.  Guardianship would allow them to ‘force’ chemo therapy on her, particularly as they estimated her chance of long-term survival around 85% after treatment. Initially, this guardianship request was refused on grounds that it was the parents’ right to end treatment, while on appeal the judge ruled her best-interest had to be reconsidered. However, the most recent judgment reasoned that the parents were concerned and informed, that they have a right to decide about treatment for their child, that there was no guarantee for success of the chemo, and that guardianship & treatment would go against the girl’s wishes as it could cause her infertility. Guardianship was refused; Sarah’s health is governed by her parents.

This ruling is pretty unique. Refusals of treatment by parents (and the child) are not always upheld, especially in cases of life and death. In 2012 and in 2009, for example, decisions to stop treatments were overruled, on grounds of neglect or failure to act in the child’s best interests due to religious convictions. These would override parental decision-making rights and a right to freedom of religion. In turn, there are also cases in which the parental choice was upheld. Overall, it is contentious how we should deal with the refusal of life saving treatments by parents(+children) as illustrated in the literature, here and here. But a firm endorsement of parental(+child’s) rights to decide about foregoing medical treatment if this can lead to her death, as in Sarah’s case, seems pretty unique.

One particular element seems to define this case, which perhaps explains its distinctive ruling. Sarah’s convictions seem to have had a major input in this case, particularly around ‘fertility’. This is illustrated by the judge’s reference not wanting to ‘go against the girl’s wishes’ and references to her concerns about potential infertility. The judge reportedly said: “Even if the treatments are successful, there is a very good chance Sarah will become infertile and have other serious health risks for the rest of her life”.

The explicit acknowledgment of her concerns about fertility is interesting to me. It is common to appreciate the opinion of a minor in medical decisions. This may even go as far as acknowledging them as opinions of a ‘mature minor’, weighting them heavily and potentially as decisive in the course of action. (The doctrine of allowing input from ‘mature minors’ is widespread (in various guises)) However, my question  is: to what extent can we identify concerns about fertility as concerns of a mature minor in this context?

Surely, (in)fertility is a serious subject. Infertility, arguably, is an ‘illness’ that fits into the definition of the World Health Organization, to be taken seriously. See also here. (In)fertility tends to be a mature topic, as it is a topic that typically adults struggle with. In fertility has a curious (illness) character; it is often only perceived once one wants to have children, and thus as an adult illness. In this case, however, concerns come from a minor and my question is how ‘serious’ should we take her concerns on this matter?

I find it peculiar to appreciate fertility concerns as a defining feature, in cases of life and death, especially when it comes from a child. According to some, 10 year old girls may have a good sense about the ‘meaning’ of bearing children. Yet, in my opinion, concerns like: if I cannot have children, my life is not worth living, can only be considered valid when expressed by an adult. To state that living is all about procreation reveals a very particular philosophy of life, one that I think we should perhaps not take as seriously from a child.

Why can refusals of blood transfusions by Jehovah ’s Witness parents (+child) be so easily overridden in the USA, as their the reasons for their refusals are deeply engrained in their religion, while the refusal of chemo by these Amish parents (+child) is treated so very differently? In the Jehovah’s Witness cases, presumptions about the best interests of the child seem to be used to override freedom of religion.  Do we perceive that fertility concerns as more rational parts within the freedom of philosophy, compared to the refusal of blood transfusion, and therefore treat it differently? I suggest that a young child cannot be more ‘rational’ expressing fertility concerns than concerns about religious inclusion. These cases should be treated similarly, either to allow young people to refuse blood transfusions and chemo, or not to at allow this at all to protect the interests of the child.

Granted, a blood transfusion is a one-time event, whereas chemo treatments are recurring events, which makes them more difficult to enforce. It is hard to imagine forcing chemo on Sarah while she is not on board and neither are her parents. However, if we deem that the interests of the child lie in survival, as we tend to say in Jehovah’s Witness cases, I am unsure that this makes a difference. I do not think that fertility concerns are better concerns than religious concerns in refusing blood, or that these demonstrate more ‘maturity’ of the minor. 

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

2 comments | Topics: Decision Making, Fertility, Patient Autonomy, Patient Care, Religion, Women's Reproductive Rights

Comments

Athene Aberdeen

Athene Aberdeen wrote on 09/10/13 4:51 PM

The Amish parents had an alternative to chemotherapy for their daughter. Infertility was certainly not one of the side effects. The 'maturity' of the minor lies in her hope of having children and not in taking a chance at treatment which would certainly destroy that hope. Whether she survives the alternative treatment is not the point in question here.
Mike

Mike wrote on 09/25/13 2:31 PM

As I live less than 10 miles from this case, I have heard about it almost daily. I think there are a few ideas that are key. First, the Amish are seen as a different culture, based on their faith. As evidenced in their separation from Gov't drafts, education for children, and social security. Also, they operate from a communitarian ethics. Lastly, any intervention by the "English" is seen as an intrusion, like telephone wires. This involvement could impact the community's willingness to be accept the english medical system as a whole. Even the 85% is suspect. I do not accept an 85% chance by mechanic fixed my brakes. If the chemo did not work, fell into the 15%, then who takes care of her? The family? They were seen as "unfit." Does she become a ward of the state? My hospital system has Amish in our waiting rooms everyday. It was a unique case that raises many issues to be sure. I enjoyed reading the article.

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BIOETHICS TODAY is the blog of the Alden March Bioethics Institute, presenting topical and timely commentary on issues, trends, and breaking news in the broad arena of bioethics. BIOETHICS TODAY presents interviews, opinion pieces, and ongoing articles on health care policy, end-of-life decision making, emerging issues in genetics and genomics, procreative liberty and reproductive health, ethics in clinical trials, medicine and the media, distributive justice and health care delivery in developing nations, and the intersection of environmental conservation and bioethics.
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