Ethical and Legal Concepts in the Refusal for Parental Consent to Medical Treatment for Minors

A review by Nathan Porter, undergraduate student at Marietta College, Ohio USA.
Review Date: July 2012

Today there rages a debate over parental rights and ethics in declining medical treatment for children. Why would parents defer from clinical opinion and refuse treatments that could benefit their child’s health? The answer to that question is complicated as each case defers from another and various factors are at work influencing the decisions of parents. In regards to making health decisions for children the role of parents includes the consideration of doing all that is possible to preserve the life of the child, but this is not the only consideration. Parents should also think broadly of what they believe is in their child’s best interest while considering the possible drawbacks and gains of treatment. They should also take into account how best to minimize the child’s suffering and how to maximize the quality of life the child has (Gilmour 2011). Parents refuse treatments of varying impacts from vaccines to transplants, but in each case the circumstances differ. This article does not focus on refusal of minor medical treatments such as vaccinations or medical check-ups for minors, but rather focuses on decisions that have to do with more serious cases in which the life of the child is to be decided based upon whether they receive treatment or not. In reviewing such cases the dominant factors that seem to influence the decisions to decline treatment are those of religious beliefs, costs of the procedures, and the overall effects the procedures will have on the health condition of the minor. Other noteworthy reasons are those contributing to a lack of understanding between the physician and parents, and cultural divides that impede the medical process.

Many question why parents would decline possible life-saving treatments. In many cases physicians and the state question them as well and go as far as to step in and ensure treatment takes place. There are numerous reasons why parents have declined medical treatments for their children. Some for more practical reasons than others. Refusal of treatment based on religious beliefs is one reason (Diaz 2001). Jehovah’s Witnesses for example frequently refuse blood transfusions even if they themselves or their children are in a life threatening condition based on their belief that to ingest blood is a sin and would bar individuals from entering heaven (Diaz 2001). For some parents a combination of costs and effects of the procedures may cause them to decline (Birchley 2010). For instance, the court case Mother Doe & Father Doe vs. VA Dept. of Social Services (2005) in the U.S. state of Virginia pitted two parents against the state social services when they declined further treatment for their child who had been diagnosed with leukemia. Over the course of the treatment (which was to take months to complete) tests revealed that the leukemia was in remission, but the treatment process was not complete. As treatment continued the parents of the child began to notice the debilitating side effects that their child was suffering from as a result of further treatment. They saw no reason to continue the treatment and declined to continue. The state took the parents to court where the parents decision was upheld as they were declared “fit parents” able to judge what was best for the child. This case presents a refusal by the parents based on the negative effects the treatment was having on the minor. An example of a combination of treatment effects on the child and costs causing parents to decline treatment is visible in the case presented by Giles Birchley in which his article describes the story of a family that has a child with a genetic disorder that subsequently caused her brain damage. As a result she needed constant care at home and frequently visited the hospital. When the child became ill during a hospital visit her condition worsened and doctors concluded that surgery was the best option for her to return to health. The surgery though would as a result require her parents to provide an increased amount of home care, but as the mother had recently given birth to a sibling who also had a similar disorder and required similar care they could not manage the increase in care and cost (Birchley 2010). For most parents it seems that the refusal of treatment generally comes down to religious beliefs, the costs of procedures, and the likelihood that the procedure will work and benefit the individuals’ health.

When the state and physicians become involved the “best interests” of the child are generally taken into consideration, but the concept of what is in the "best interests" of the child are debatable. Whenever the state intervenes they refer to the "best interest test" standard when deciding on courses of action. In the application of the best interest test courts first only take into the account the interest of the child, secondly the court emphasizes expert advice and the assessment of benefits and burdens of treatment and alternatives, and thirdly courts take into account the psychological, social, and emotional considerations (Pinnock 2005). For example in the court case of Elisha McCauley a family of Jehovah’s witnesses from Massachusetts had a child diagnosed with leukemia and treatment required that the minor receive blood transfusions to survive. The parents refused treatment on the assertion that it conflicted with their religious beliefs, but the state ordered and upheld the decision that blood transfusions be given to the child citing that "The power of the parent, even when linked to a free exercise claim, may be subject to limitation if it appears that parental decisions will jeopardize the health or safety of the child, or have a potential for significant social burdens. When a child's life is at issue, it is not the rights of the parents that are chiefly to be considered. The first and paramount duty is to consult the welfare of the child." In this case the courts held that the transfusions were in the best interests of the child trumping the parents’ right to refuse based upon religious values. Another instance involved a family who’s recently born child was diagnosed with biliary atresia. An operation at the age of three weeks caused the child considerable pain and distress while ultimately ending up as an unsuccessful attempt at treatment. The parents (who were both health professionals) consulted pediatricians on possible treatment options who both were in favor of liver transplantation. The parents ultimately decided that they would not seek the liver transplant treatment, but when a liver became available the transplant unit called local social service officials who took the issue to court where the judge ruled that the mother was behaving unreasonably and that the transplant was in the best interest of the child for the prolongation of his life. The parents appealed the ruling in which Dame Elizabeth Buffer-Sloss reversed the lower court ruling and criticized the judge for assessing the mother’s reasonableness in terms of if she accepted medical opinion. The judge also pointed out that the mother had taken a broader view in weighing the infant's present peaceful (if short) life against the pain, stress, and upset of invasive surgery, and that while the welfare of the child was the main concern, the prolongation of his life may not be in his best interest (Nicholson 1997, Leask 2005).

There is no clear cut way to address the impasses that occur when physicians, parents, and the state collide in attempts to control what happens to the minor. There are ideas on how the process could be refined so that it becomes simpler to reach a consensus and so that the courts can be avoided. Some suggest that the best interest standard should be elaborated on so that it is clear what is considered to be in the best interest of the child (Birchley 2010). As it stands the best interest test leaves the “best interests” of the child up for interpretation and many argue about the different weights attached to various aspects of the test when it is considered (Gilmour 2011). There are others who believe that committees composed of non-biased experts should be convened for the specific purpose of mediating and advising in the hopes of avoiding wasting time by involving the courts. Proponents of this suggestion maintain that a group of individuals from a broad range of appropriate expertise in the medical and legal professions would allow for quick informed advice, if a resolution cannot be met court resources will then be utilized to ensure the welfare of the minor (Pinnock 2005).

Overall the decisions that parents face in these situations are extremely difficult to make. Parents have to bring into question the best interest of their child, the quality of life that they will have, the suffering they may face, and whether they themselves can bear financial the burden of caring for them. In instances where parents refuse care due to religious beliefs, to subdue the suffering of a child, or because they cannot bear the financial burden the state may intercede.

References

Birchley, Giles. "What Limits, If Any, Should Be Placed On A Parent's Right To Consent
And/Or Refuse To Consent To Medical Treatment For Their Child?." Nursing
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Diaz, Karen L. "Refusal Of Medical Treatment Based On Religious Beliefs: Jehovah's Witness
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Leask, K. "The Role Of The Courts In Clinical Decision Making." Archives Of Disease In
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Nicholson, Richard H. "In The Family's Best Interests." Hastings Center Report 27.1 (1997): 4.
Academic Search Complete. Web. 22 July 2012.

Pinnock, Ralph, and Jan Crosthwaite. "When Parents Refuse Consent To Treatment For Children
And Young Persons." Journal Of Paediatrics & Child Health 41.7 (2005): 369-373.
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Robert MacDougall, D. "Rawls And The Refusal Of Medical Treatment To Children." Journal
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Sunita Vohra, et al. "Considering Complementary And Alternative Medicine Alternatives In
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In the Matter of Elisha McCauley. Supreme Judicial Court of Massachusetts. 409 Mass. 134; 565
N.E.2d 411; 1991 Mass. LEXIS 40. LexisNexis Academic. Web. Date Accessed:
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Mother Doe & Father Doe vs. Anthony Conyers, Jr., Commissioner of VA Dept. of Social
Services and Sarah C. Snead, Director of Chesterfield Dept. of Social Services and VA
Governor Mark E. Warner. Circuit Court For The County Of Chesterfield VA
Chancery No. CH05-809. June 17, 2005.