Free Will in Matters of Life and Death

By Rev. Aaron Todd

Did you see the story that broke last week about a 17 year old girl from Connecticut who, in the midst of her four month old battle against Hodgkin's Lymphoma, had somewhat recently decided to discontinue her chemotherapy treatments and seek "alternative" ways to combat the cancer that has invaded her body?    This decision was supported and affirmed by her parents but not by the judicial system of the state of Connecticut. If you haven't read this story, read about it here:

 In November of 2014, the Department of Children and Families was able to successfully petition the state to compel the girl, who is being identified in the media as "Cassandra" to undergo chemotherapy against her wishes and the wishes of her family.  This action set off a peculiar chain of events including Cassandra running away from home, the state placing her in "protective" custody, and two rather intensive court battles.  All of these actions were done in an attempt to reconcile to one basic question: "who has the authority to determine in what manner the health care of a minor will be administered?"

First, the facts (and it is in these facts that we begin to find the grey areas): Cassandra is a minor, the legal age of adulthood in Connecticut is 18.  Under Connecticut law, her rights as a minor who still lives under care of her parents are fairly limited. She can not vote nor can she can  (legally) drink. By law she is compelled to stay in high school unless she graduated early or her parents are able to demonstrate why it was in her best interest to withdraw, and she cannot legally get married unless her parents provide written permission.  

More facts: according the the National Cancer Institute, Hodgkin's Lymphoma strikes approximately 9,000 Americans every single year.  Out of those 9,000, approximately 1,100 patients die from this disease.  This equates out to about a 12% mortality rate.  In Cassandra's case, it was determined by medical professionals that, with treatment, she would have an 85% survival rate, but without treatment she would succumb to the cancer within two years. 

There are obviously a lot of different things to consider in this case and I am thankful that I am not the one having to make this decision.  From a legal standpoint, at the core of this case is the question of what is known as the "Mature Minor Doctrine," a policy that states that minors (those under 18) who still live under the care of their parents may make their own decisions regarding their health care.  In this particular case, the courts have ruled that Cassandra and her parents were not competent enough to make these decisions.   From what I understand, the basis for this judgement comes from the fact that Cassandra did run away from home not long after this legal battle began.  

This case brings with it a multitude of questions that are thus far not being answered by media reports.  It is my hope that more information will be forthcoming as this case undoubtedly continues to rise in the public consciousness.  For me, the issues at hand come down to basic questions of autonomy.  This case highlights a variety of similar medicinal questions that have arisen over the past several months, all of which coming back to this question of who has the ultimate authority to make medical decisions for an individual?  

We can certainly understand both perspectives in this particular case.  Medical professionals, supported by the state, firmly believe that they can save this girl's life.  They believe that for her to deny treatment to herself is to deny herself of life.  This tension is at the core of the medical code of ethics; doctors are here to preserve life.  On the other side, we can certainly appreciate the perspective of this family. Cassandra does not want the toxic chemicals of chemotherapy in her body, she and her family want to pursue other forms of treatment, and it is believed by the mother that, "she isn't going to die." In a statement regarding her preferred choice to not undergo the chemotherapy treatments, Cassandra says that in regards to her life span, "it's about quality, not quantity." 

As I have been reading up on this story, my mind has been drifting to the numerous instances about parents who, for whatever reason, refuse to vaccinate their children (Quick side note, if this is you, please, please, please, rethink that position, and if you still refuse to immunize your children, do not bring them into contact with my boys).  We have recently heard reports about a measles (measles, people, a disease that we've pretty much taken care of) outbreak at Disneyland in California. So on the most basic levels, as it relates to the case in Connecticut, why is it legally appropriate to mandate that a 17-year old, whose cancer is of no threat to anyone but herself, continue chemotherapy treatments, but it is not just as appropriate to mandate vaccinations against altogether preventable diseases that pose a real public health issue?  Why is one parent deemed negligent enough to warrant her daughter being placed in protective custody, but not those who refuse to have their children (who cannot yet make choices for themselves) immunized?  

In addition, the question of autonomy remains. We certainly recall the story of the young woman in Oregon who became the standard-bearer for the "Death with Dignity" movement.  There, we have a case where a legal adult chose to forgo any potential treatments and to allow her life end on her own terms.  In this midst of that story, the same debate raged on; Who has the right to make these life/death decisions, and on what basis are those rights granted?  There were (an undoubtedly still are) many who wish that the courts would have mandated some sort of treatment for this woman.  Under what conditions, religious or otherwise, would it be acceptable to deny a woman with full cognitive function the right to have autonomy over her own life?

So as we come back to the story of Cassandra in Connecticut, the questions of autonomy remain.  Can she make her own decisions? According to the state, no, she cannot.  Can her parents make decisions for her?  It would appear that under most circumstances, under Connecticut law, that yes, they can, so why not in this case?  Finally, under what standard does (or should) the state(s) use to determine how health care should be administered? 

From a faith-based perspective, the tension in this case and so many like it is very real. On one hand, the belief that life is precious and that all people have infinite value in the eyes of God is a core tenant of all faiths, and on the other hand we understand that human beings have free-will and autonomy over their own lives and are free to make their own choices.  So how do we determine how these cases should be understood?

What say you?  Are our churches providing the open space to grapple with such issues?  Are our pastors providing the opportunity for honest conversation about how our congregants understand life and death and that murky grey area in between the two? How can we do a better job of helping to facilitate those conversations in an environment that is safe and free from judgement?