A 17-year-old Connecticut girl recently diagnosed with cancer who refused to undergo chemotherapy was removed from her home by state child welfare authorities in November. For the last two months, she has been confined against her will to Connecticut Children’s Medical Center in Hartford, where she currently continues to receive unwanted treatment. Last week the state Supreme Court considered her appeal.
Cassandra was diagnosed with Hodgkin lymphoma in September but adamantly refused to complete the prescribed treatment, which can be painful and traumatic. She called the chemotherapy “poison,” believing it would do as much harm to her body as the cancer. When her mother supported this decision, the Department of Children and Families (DCF) stepped in, reported her mother for neglect, and put her into state custody to make medical decisions for her.
Family attorneys argued that Connecticut should adopt the “mature minor doctrine,” which allows courts to consider evidence on whether a teen is competent to make his or her own health care decisions. Despite that petition, the Connecticut Supreme Court ruled unanimously on Jan. 8 that the state can require Cassandra to continue treatment. If she were 18, she could make that decision for herself.
Only a few states have adopted the “mature minor doctrine,” which allows 16 and 17-year-olds to argue in court whether they are mature enough to make health care decisions. In Illinois and Maine, for example, state courts ruled that teenagers under the age of 18 can refuse treatment if they show mature judgment and are fully aware of the consequences of their decision. In 1989, Illinois allowed a 17-year old Jehovah’s Witness with leukemia to refuse life-saving blood transfusions under that doctrine.
In Cassandra’s case, doctors stated that without treatment, she will die. They testified that Hodgkin lymphoma, a cancer of the lymph system, is lethal without the recommended treatment. Medical wisdom states that with treatment she has an 85 percent chance of survival, whereas without it, she has only two years to live. Considering her high chances of death without treatment, the DCF justified its actions in these words:
“When experts — such as the several physicians involved in this case — tell us with certainty that a child will die as a result of leaving a decision up to a parent, then the Department has a responsibility to take action…. we have an obligation to protect the life of the child when there is consensus among the medical experts that action is required.”
In the U.S., adults have the right to refuse life-saving medical treatment, providing they are not incompetent. The decision to end life-prolonging treatment is often made by elderly patients who are expected to die soon and wish to live with comfort and dignity for whatever little time remains. But when young people choose to die, like 29-year-old Brittany Maynard, people take notice. Maynard, who had terminal brain cancer, chose to end her own life in November of last year rather than undergo treatment. For minors, the right to refuse life-prolonging treatment is even more contentious. Cassandra is just eight months away from turning 18.
Hodgkin Disease: The Good and the Bad News
Hodgkin lymphoma or Hodgkin disease, also known as Hodgkin’s lymphoma or Hodgkin’s disease, is named for Sir Thomas Hodgkin, who initially described the condition in the 1830s. According to the American Society of Hematology website, the cure of Hodgkin lymphoma in the 20th century was “one of cancer’s biggest success stories.” Breakthroughs in radiation therapy and chemotherapy have “transformed an invariably fatal disorder into one that is routinely cured.” Today, more than 80 percent of children, adolescents, young and older adults survive Hodgkin disease with treatment. (Unfortunately, the impact of this success story created great optimism for the treatment of other cancers, which in fact have not always had such an impressive success record.)
The Hematology.org website also mentions another disappointment: “Another important lesson from the Hodgkin’s experience was the price of cure — not just nausea and hair loss, but also late adverse effects from radiation therapy and chemotherapy in the form of second cancers, heart and blood vessel disease, and sterility, some of which are not apparent for decades after treatment,” an important issue in a disease that primarily affects individuals in their 20s and 30s.
Cancer Treatment Options
In Cassandra’s case, doctors said her treatment is life-saving and she will die without it. Even her attorney admitted there’s “a good chance she could survive her cancer with treatment, and there’s a good chance she could die if she doesn’t.”
I certainly understand that the issue is tricky in the case of a minor and especially in the case of a disease with a terrific conventional treatment record, but my question is, as in the Brittany Maynard case, why do people think there are only two options? Why do patients think their only choice is between taking toxic treatment with horrible quality of life and dying if they refuse that treatment? The reality is that there are many ways patients can recover from cancer, and some of them are non-toxic options. Instead of threatening patients who don’t wish to follow the recommended standard of care with certain death – and I have witnessed such intimidation — doctors should encourage those who wish to seek less toxic options to do so. Preferably under medical supervision.
Health Care Freedom of Choice
Over 200 years ago, Dr. Benjamin Rush, noted physician, medical professor, surgeon general to the Continental armies, and signer of the Declaration of Independence, urged that medical freedom be guaranteed by the Constitution. The following warning was attributed to Dr. Rush during the 1787-1791 Constitutional Convention:
“The Constitution of this Republic should make special provision for medical freedom. To restrict the art of healing to one class will constitute the Bastille of medical science. All such laws are un-American and despotic…Unless we put medical freedom into the Constitution, the time will come when medicine will organize into an undercover dictatorship and force people, who wish doctors and treatments of their own choice, to submit to only what the dictating outfit offers.”
Rush made it clear: Freedom of choice in health care is a basic right, and it should apply both to providers of health care and to health care consumers, most of whom are capable of making informed decisions. At BeatCancer.org we couldn’t agree more!