The Complicated Legacy of Cassandra Callender Ethic

The Complicated Legacy of Cassandra Callender Ethics, Decision-making, and the Role of Adolescents

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 (COVID-19), her un- timely death invites reexamination of her story and the lessons it provides. Cassandra C, as she was refer- enced in news reports to protect her identity as a 17- year-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 treat- ment after receiving several cycles of chemotherapy in her home state of Connecticut. Her mother, who sup- ported 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 Connecti- cut Department of Children and Families, who took le- gal custody of Cassandra, precipitating a lengthy, con- tentious legal battle.

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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 re- fuse 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 ulti- mately decided to pursue chemotherapy, immuno- therapy, and other standard treatments. Despite these efforts, she died due to her disease.

Cassandras story is troubling unto itself but per- haps even more so when contrasted with the cases of Billy Best and Abraham Starchild Cherrix, 2 oft-cited teen- agers diagnosed with Hodgkin lymphoma who simi- larly refused recommended therapies. Both adoles- cent boys refused further treatment after their initial cycles of chemotherapy. No legal action was taken in the case of Billy, a resident of Massachusetts; Abrahams case went to court and culminated in Abrahams law in Vir- ginia, increasing rights of adolescents to refuse medical treatments.

Although uncommon, cases in which adolescents re- fuse recommended therapies are legally and ethically complex. Legal provisions, such as mature and emanci- pated minor statutes, provide guidance regarding when minors can provide legal consent foror refuse medical interventions. For example, many states allow adolescents access to sexual health care and treatment for substance use and mental health without parental no- tification, but these provisions vary by state.2 The Ameri- can Academy of Pediatrics emphasizes the importance of communicating information about treatment op- tions in understandable, age-appropriate and develop-

mentally appropriate language.2 However, it is less clear whether adolescents should be legally supported in re- fusing potentially life-saving interventions, even when parents agree with them, as did Cassandras mother.3,4

Legal issues notwithstanding, these refusals war- rant further examination of the decision-making role of adolescents and young adults (AYAs)particularly those with cancer, a life-threatening but typically cur- able disease in this age group. AYA decision-making has received increased interest in research and clinical fo- rums in recent years, due in part to the medical, devel- opmental, and psychosocial complexity of AYAs. Sur- vey data from AYAs with cancer demonstrate that most wish to share decision-making responsibility with their oncologists, but 24% of AYAs ultimately express expe- riencing regret about the role they played in initial cancer- related decisions.5 Heightened regret is reported among AYAs whose oncologists told them what their treat- ment would be without offering alternatives, highlight- ing the need for improved early engagement with all pa- tients and not merely with those who refuse treatment. Nearly half of AYAs report receiving suboptimal infor- mation about long-term treatment toxic effects, for ex- ample, despite 87% considering this information to be very or extremely important.6 These shortcomings in in- formation delivery and decision-making role could con- tribute to larger problems with communication and trust for this already vulnerable population.

We have a particularly limited understanding of de- cision-making in adolescents like Cassandra, both about the decision-making role they typically play and the role they prefer. In most jurisdictions, prior to a teenagers 18th birthday, their parents or guardians have legal de- cisional authority. There is, of course, nothing magical about that moment in time; nothing imparts a newly- minted 18-year-old with new capacity for making inde- pendent medical decisions. It is a semiarbitrary but le- g a l l y n e c e s s a r y d e m a r c a t i o n . I n p r a c t i c e , i t i s recommended that adolescents be included in deci- sions about their treatmentand their assent sought until they reach the age of majority, when decisions be- come legally their own.2 However, the extent to which this takes place remains unclear. It appears that adoles- cents are less likely to hold their desired decision- making role than those several years older when faced with cancer treatment decisions,5 raising important questions about whether and when this discordance is ethically justifiable.

This limited decisional involvement by adoles- cents may be even more pronounced among those whose cancer has not adequately responded to treat- ment. Despite adolescents well-documented desire to actively engage in health care decisions, recent work

VIEWPOINT

Jonathan M. Marron, MD, MPH Dana-Farber/Boston Childrens Cancer and Blood Disorders Center, Boston, Massachusetts; and Center for Bioethics, Harvard Medical School, Boston, Massachusetts.

Elaine C. Meyer, PhD, RN, MBE Center for Bioethics, Harvard Medical School, Boston, Massachusetts; and Department of Psychiatry, Boston Childrens Hospital, Harvard Medical School, Boston, Massachusetts.

Kerri O. Kennedy, MA, BSN, RN Center for Bioethics, Harvard Medical School, Boston, Massachusetts; and Office of Ethics, Boston Childrens Hospital, Boston, Massachusetts.

Corresponding Author: Jonathan M. Marron, MD, MPH, Dana-Farber/Boston Childrens Cancer and Blood Disorders Center, 450 Brookline Ave, Boston, MA 02215 (jonathan_marron@ dfci.harvard.edu).

Opinion

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demonstrates their scant involvement in conversations with clini- cians and parents about their relapsed and refractory cancer.7 Fur- ther, when adolescents are engaged in these conversations, it is more frequently regarding their general medical history and personal life than about their treatment preferences or values,7 the latter far more germane to advanced cancer treatment decisions. This becomes in- creasingly concerning in light of data demonstrating that parents of- ten have poor understanding of their adolescents values and pref- erences about end-of-life care. A 2020 analysis8 reports that despite adolescents expressing strong end-of-life perspectives, these are fre- quently incongruent with what their parents believe them to be. This incongruence is especially worrisome as it relates to consequential domains, like preferences regarding life-sustaining interventions and beliefs about death.

It is difficult to know how involved Cassandra was in discus- sions about her treatment at the time of diagnosis and impossible to predict with certainty whether her story could have turned out differently. Moreover, it is not clear whether the complex legal and psychosocial features of Cassandras case had any impact on her lym- phoma and/or eventual death. Nonetheless, after her death, Cas- sandras mother stated, She basically said, Ma, nobody was here for me. And she said, Every time I tried and tried, I get kicked in the gut.9 It is difficult to read those words and not wonder what we

could do better on behalf of our adolescent patients and their fami- lies. How could we have better served Cassandra, and perhaps even more importantly, how can we better care for adolescents going forward?

The time has come for us to commit to more deeply respecting adolescents by optimally integrating them into their health care de- cision-making. Among factors to consider are the risks and ben- efits of the decision, the adolescents maturity, their desired decision- making role, and their lived experience.2-4 Improved engagement has the potential to promote communication and trust, the latter associated with less decisional regret.5 Only with improved engage- ment from the start can we better navigate the dilemma of treat- ment refusals like Cassandras, which may be best addressed via these preventive efforts. Although courts play a fundamental role in such cases, ideally, communication and engagement will de- crease the need for court involvement, which many find confron- tational and damaging to the clinician-patient-parent relationship.

Cassandra Callenders untimely death, like that of any young per- son, is a tragedy. Hers also serves as a call to action. We can honor Cassandra as the impetus for improved engagement of adoles- cents in decisions about their health care, particularly potentially life- saving interventions. Such improvements would make for a wor- thy, befitting legacy.

ARTICLE INFORMATION

Published Online: November 16, 2020. doi:10.1001/jamapediatrics.2020.4812

Conflict of Interest Disclosures: Dr Marron has received grants from the Harvard Medical School Center for Bioethics and Conquer Cancer Foundation; fees for serving on the ethics advisory board from Partner Therapeutics; and speaker fees from Sanofi-Genzyme. No other disclosures were reported.

REFERENCES

1. NBC News. Connecticut teen with curable cancer fights to stop chemo. https://www.nbcnews.com/ health/cancer/connecticut-teen-curable-cancer- fights-stop-chemo-n281511. Accessed June 1, 2020.

2. Katz AL, Webb SA; Committee on Bioethics. Informed consent in decision-making in pediatric

practice. Pediatrics. 2016;138(2):e20161485. doi:10. 1542/peds.2016-1485

3. Diekema DS. Adolescent refusal of lifesaving treatment: are we asking the right questions? Adolesc Med State Art Rev. 2011;22(2):213-228, viii.

4. Ross LF. Against the tide: arguments against respecting a minors refusal of efficacious life-saving treatment. Camb Q Healthc Ethics. 2009;18(3):302-315. doi:10.1017/ S0963180109090471

5. Mack JW, Fasciano KM, Block SD. Adolescent and young adult cancer patients experiences with treatment decision-making. Pediatrics. 2019;143(5): e20182800. doi:10.1542/peds.2018-2800

6. Greenzang KA, Fasciano KM, Block SD, Mack JW. Early information needs of adolescents and young adults about late effects of cancer treatment. Cancer. 2020;126(14):3281-3288. doi:10.1002/cncr.32932

7. Frederick NN, Mack JW. Adolescent patient involvement in discussions about relapsed or refractory cancer with oncology clinicians. Pediatr Blood Cancer. 2018;65(4):e26918. doi:10.1002/pbc. 26918

8. Friebert S, Grossoehme DH, Baker JN, et al. Congruence gaps between adolescents with cancer and their families regarding values, goals, and beliefs about end-of-life care. JAMA Netw Open. 2020;3(5):e205424. doi:10.1001/jamanetworkopen. 2020.5424

9. Passmore S. Mother of Cassandra Callender speaks out after her death. https://www.wfsb.com/ news/mother-of-cassandra-callender-speaks-out- after-her-death/article_ff9ce6bc-97be-11ea-b8ff- 13904fb5307e.html. Accessed June 1, 2020.

Opinion Viewpoint

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