The Complicated Legacy of Cassandra Callender

Abstract

On May 12, 2020, Cassandra Callender died at the age of 22 years. Pushed off the front pages by the latest news about coronavirus disease 2019 , her untimely death invites reexamination of her story and the lessons it provides. "Cassandra C," as she was referenced in news reports to protect her identity as a 17year-old, was diagnosed as having Hodgkin lymphoma in September 2014. 1 Although believed to have a more than 80% chance of cure, she refused further treatment after receiving several cycles of chemotherapy in her home state of Connecticut. Her mother, who supported her decision, stated at the time, "My daughter does not want poison in her body.…She is very bright, very smart.…Does she know she will die? Yes. And do I know that? Yes." 1 The hospital contacted the Connecticut Department of Children and Families, who took legal custody of Cassandra, precipitating a lengthy, contentious legal battle.The Connecticut Supreme Court ultimately ruled that Cassandra did not meet the standards set forth by the mature minor statute and thus could not legally refuse treatment. Since Cassandra was deemed not to be a mature minor, she was held in the hospital for 5 months against her will and given intravenous chemotherapy over her objections. Regrettably, despite treatment, her cancer returned the following year. Then legally an adult, Cassandra initially took alternative treatments but ultimately decided to pursue chemotherapy, immunotherapy, and other standard treatments. Despite these efforts, she died due to her disease.Cassandra's story is troubling unto itself but perhaps even more so when contrasted with the cases of Billy Best and Abraham Starchild Cherrix, 2 oft-cited teenagers diagnosed with Hodgkin lymphoma who similarly refused recommended therapies. Both adolescent boys refused further treatment after their initial cycles of chemotherapy. No legal action was taken in the case of Billy, a resident of Massachusetts; Abraham's case went to court and culminated in Abraham's law in Virginia, increasing rights of adolescents to refuse medical treatments.Although uncommon, cases in which adolescents refuse recommended therapies are legally and ethically complex. Legal provisions, such as mature and emancipated minor statutes, provide guidance regarding when minors can provide legal consent for-or refusemedical interventions. For example, many states allow adolescents access to sexual health care and treatment for substance use and mental health without parental notification, but these provisions vary by state. 2 The American Academy of Pediatrics emphasizes the importance of communicating information about treatment options in understandable, age-appropriate and develop-VIEWPOINT

Effect of the Family-Centered Advance Care Planning for Teens with Cancer Intervention on Sustainability of Congruence About End-of-Life Treatment Preferences

“…Adolescents with a serious illness, their families, and clinicians concur that pediatric advance care planning (pACP) is appropriate. [1][2][3][4] Key elements of pACP in this population [1][2][3][4][5][6] include (1) giving adolescents a voice in their own end-of-life care, (2) initiating early pACP conversations to close gaps in understanding, 7 (3) documenting advance directives in the electronic health record (EHR), and (4) sharing pACP conversations with the treating clinicians to support communication before a medical crisis. 8 Various models of pACP for adolescents with a serious illness are being developed, [9][10][11][12][13] along with tools to guide conversations.…”