My Thoughts As A Patient Advocate And A Mother

I was asked to respond to the controversial issue of a Connecticut teen who was refusing treatment for her cancer and I’ve given it a lot of thought, not only as patient advocate but also as a mother. My personal belief, as discussed in the Brittany Maynard case, is that all should have access to the “Death with Dignity” act but ONLY AFTER ALL TREATMENT OPTIONS, STANDARD PROTOCOL, CLINICAL TRIALS AND OFF-LABEL DRUGS THAT SHOW BENEFIT TO THE SPECIFIC DISEASE HAVE BEEN EXPLORED.

When I first read about this, my first thoughts were of course, this 17  year old should have the right to choose, especially if her mother is in agreement. However, when I read the article a second time and focused on the statement,  “ Doctors said chemotherapy would give her an 85% chance of survival but without it, she would die”, it  took me  right back to the Brittany Maynard issue.

Those of us who are patient advocates and work daily with brain tumor specialists who treat GBM, believe that Brittany A) did not know about all of her options and B) nor did she have IMMEDIATE ACCESS to all advanced treatment options/clinical trials that could  have created a better quality of life for her as well as survivorship for a period of time.

In the case of Cassandra C., it centers around whether she is mature enough at 17 (18 in September)  to make  her own medical decisions in regards to receiving treatment/chemotherapy. What matters in this case is… has Cassandra and her family been presented with all other additional treatment options?  If they have not, then it seems reasonable that this is what the Connecticut Supreme Court should potentially be mandating to the patient as well as to her mother.

I believe that everyone should be able to receive all treatments for their illness, especially if they are educated about those treatments/clinical trials, they understand the gains and the risks of all treatment options, and for those options they decide to pursue, they also sign the liability waiver whether that waiver requires a parental informed consent or not.  If and when the patient and their parents are fully educated, have full consent, understand all treatment options and still wish to reject treatment, then I believe the desires of the patient should be respected.

Of interest, while in NYC recently, there was discussion related to what “terminally ill” really is and how it differs from chronic illness and disabilities.  The states of NY, NJ and Connecticut are presently in debate on this issue.  While the bills in these three states reflect a growing movement in the U.S. and currently, the “Death with Dignity” act is legal in the states of WA, OR, MT, NM and VT, I would  like to see an addendum that reflects that all treatment options and advanced treatment options have to be explored prior to a decision being made  by the patient.

As treatment for terminal illness begins to shift to a more “patient focused” approach; there is an improvement in patients’ right to treatments, drugs, devices, and clinical trials; and as more and more states adopt the “Death with Dignity” act; I expect this conversation to get very loud. In response to more and more people continuing to reach out to myself and the Chris Elliott Fund on these heart pressing issues, I am again confirmed in my dedication to seek out industry thought leaders in efforts to represent the “patient public” with a strong voice and a desire to make a difference.

Dellann Elliott Mydland

President & Founder of the Chris Elliott Fund to End Brain Cancer