Guest columnist Laura Stevens discusses proposed Utah legislation that will allow parents to make medical decisions for their children involving CAM therapies that are reasonable and prudent, without fearing retaliation in the form of an abuse and neglect proceeding or action by a state child welfare agency.

By guest columnist, Laura Stevens
On November 19th, 2004, 6 year old Jesse Koochin of Florida passed away due to complications with a rare cancerous brain tumor. Jesse’s drawn out battle for life, aided by his devoted parents, Steve and Gayle Koochin, and his sad and early death have precipitated another battle: one that is now being fought in battlegrounds of the legislature over the rights of parents to make medical decisions for their children.
Jesse was diagnosed with Medulablastoma of the brain in April, 2004, and his oncologist performed immediate surgery to remove the cancerous tumor. After the surgery, doctors urged Jesse’s parents to follow through with very aggressive radiation and chemotherapy, as well as a bone marrow transplant. After doing much research into treatment options, Jesse’s parents opted for a treatment involving less harsh naturopathic chemo at a holistic center in Georgia.* However, by the time the family arrived in Georgia, Jesse had slipped into a coma and was unable to start the holistic protocol. Instead, Jesse was rushed to the ICU of another Georgia hospital where he was treated with emergency radiation.
The radiation appeared to have helped Jesse’s breathing rates, but he remained in a coma with a poor prognosis. During a personal conversation with Jesse’s father, Steve Koochin informed me that at this point in Jesse’s treatment he tried to urge the doctors in the ICU to allow him to give Jesse Vitamin C while he was in the coma. Mr. Koochin stated that he had found numerous papers vouching for the efficacy of Vitamin C during cancer therapy, but the staff at the hospital refused to heed his request to administer the treatment to Jesse. When Jesse’s parents persisted, the ICU doctors threatened to report them to Social Services if they administered anything to Jesse that was not within the hospital’s standard protocol.
With Jesse still in a coma, his parents asked that he be released so that they could take their son to a holistic cancer clinic in Mexico. Mr. Koochin informed me that after much research, they chose to go to Mexico because, as he pointed out, there is not a single holistic ICU in the United States. However, the hospital in Georgia refused to release Jesse, indicating that they would only release him to another ICU in the United States. Thus, Jesse was moved to an ICU closer to his home in Florida where the doctors, who predicted that Jesse would not live more than a week, released him to his parent’s care at home, according to the Koochin’s wishes. At this point, Steve and Gayle Koochin took Jesse, who was on full life support, to a holistic clinic in Mexico.
According to Mr. Koochin, Jesse came out of his coma and was breathing and eating on his own after a month of treatment at the holistic clinic in Mexico. On July 19, 2004, Jesse returned to the United States to continue his recovery – this time as a normal passenger on an airplane. However, Jesse’s condition remained unstable and in September, his parents brought him to Utah to see an alternative medical practitioner. (See story.)
The alternative practitioner refused to treat Jesse, saying he was too ill, and referred him to Primary Children’s Medical Hospital in Salt Lake City where his condition continued to deteriorate. When Jesse slipped into a coma for the second time, the doctors pronounced him brain dead. However, Jesse’s parents objected, declaring that alternative methods may be able to help revive him as they had done in Mexico. Unfortunately, Jesse’s condition was too serious for any treatment to revive him, and on November 19th, the 6 year-old boy was pronounced dead.
While Jesse’s individual battle with cancer is now over, there are many battles still to be fought. Appalled by the treatment they received in some American hospitals and the limitations on their rights as parents to make decisions concerning Jesse’s treatment, Jesse’s parents have become significant advocates of a state bill in Utah. The bill is highly relevant to Jesse’s case and has become more pressing because of the high profile of the Koochin case. Entitled, “Medical Decisions of a Parent or Guardian,” the legislaiton would modify parental discretion over medical decisions regarding the treatment of their children.
The proposed bill states:
“A health care decision made by a child’s parent or guardian does not constitute severe child abuse or neglect unless the state or other party to the proceeding shows, by clear and convincing evidence, that the decision is not reasonable and prudent; and a parent or guardian retains the right to a second health care opinion;”
Further,
“[this bill] provides that a parent or guardian is not guilty of child abuse for selecting a treatment option for the medical condition of the parent’s or guardian’s child, if the treatment option is one that a reasonable parent or guardian would believe to be in the best interest of the child.”
It remains to be seen whether this bill will be passed and what outcome it will have for families who seek alternative care for their children in Utah and across the country. At this point, there is hope that Jesse’s death will be a catalyst for positive changes in the conventional and integrative health care community, as well as productive communication among practitioners, parents, and patients.
This posting is a tribute to Jesse Koochin, and his parents, Steve and Gayle. May you find some peace in the healing changes and positive influences brought about by Jesse’s life and death.
* For more details about Jesse’s treatment, please visit www.jessekoochin.com.
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Thank you Laura for this post and blessings and comfort to Steve and Gayle Koochin.
The proposed legislation brings a lot of clarity to regions within medicine that need healing. Parents who make loving choices should not be penalized by outworn ideologies within the health professions. Legal rules must balance the limits of current medical knowledge with the wisdom and compassion that marks a healer’s call.
Look for Cohen MH, Kemper KJ, Complementary therapies in pediatrics: A Legal Perspective, for a timely and scholarly discussion of relevant clinical, ethical, and legal issues, in the next issue of Pediatrics.