Douglas Olsen is an associate professor at the Michigan State University College of Nursing in East Lansing and a contributing editor of AJN, where he regularly writes about ethical issues in nursing.
The case of Cassandra, a 17-year-old female in Connecticut being compelled by the court to undergo chemotherapy for Hodgkin’s lymphoma, has aroused interest in the media and among bioethicists, who have offered mixed conclusions. (Here’s a recent update on Cassandra’s legal status.) For example, Ruth Macklin concludes that the actions taken to force the treatment were not justified, while Arthur Caplan concludes that compelling her to have the chemo is justified. Both are scholars of the highest order.
I agree with Caplan that she should be given the chemotherapy, but my purpose here is to illustrate that perspective plays an often unacknowledged role in ethical analysis. When feelings and personal perspective go unacknowledged, the analysis loses credibility and depth.
The principles in conflict in this the case are straightforward for ethicists: respect for autonomy versus beneficence.
As a society, we value control over personal choice, that is, autonomy, which would mean honoring Cassandra’s decision to forgo the chemo. The chief justification for overriding a patient’s autonomy is that the patient lacks decision-making capacity because she is a minor.
However, we also value doing what is best for patients—beneficence —and this means giving the chemo. Within the principle of beneficence, the “best” course of action is the one my training and experience as a nurse tells me will result in improved health, more function, and better quality of life.
The chief justification for overriding beneficence is that a patient with decision-making capacity chooses to do otherwise. The ethically relevant controversies of this case include:
- the nature of Cassandra’s decision-making capacity
- the degree of benefit expected from the treatment
- the degree of harm expected as a result of honoring her refusal
The law considers Cassandra, as a minor, to lack decision-making capacity. However, she would probably pass a clinical assessment of her decision-making capacity. Cassandra is about nine months from being 18, the age at which she would be assumed to have capacity. In similar cases, the law sometimes invokes the ‘mature minor’ doctrine and allows a teen with clinically determined decision-making capacity to make the decision. (Editor’s note: A 2007 AJN article by the author discusses a similar case; it’s free until February 28.)
Other facts supporting a choice to respect her autonomy are that her mother agrees with her refusal and that the patient published an articulate essay (log-in required) in the Hartford Courant describing her situation.
Arguments that might be made against choosing respect for autonomy over beneficence are that the reasons for refusing chemotherapy given by Cassandra and her mother, while understandable in terms of the desire to avoid chemotherapy’s side effects, seem shortsighted in terms of scientific facts about this disease and its treatment.
In terms of the cost-to-benefit ratio of treatment, physicians who testified in this case have estimated that the treatment is curative at an 85% rate and that the patient will likely die without the treatment. The stakes are high.
The optimum solution would be clinical—that is, that clinicians would find a way to work with Cassandra so that she accepted treatment willingly. I assume that this approach was tried and failed. (There are a number of essays in the media, such as this open letter addressed to Cassandra by a cancer survivor, attempting to bridge the gap between her and her health care providers.)
A typical ethics post would continue by demonstrating the conclusion through weighing and elaborating on the identified principles. Instead, I want to consider the meaning behind my perception that compelling Cassandra’s treatment is justified, which I believe arises from my perspective as a parent with a grown child.
Other perspectives may direct individuals toward other conclusions. In discussions with nursing students, I find that we are considering this case from very different perspectives: I as protector of youth from immature judgment, they as youth concerned with oppression by overreaching authority.
Whatever the individual perspective, rigor is essential for ethical analysis—or my conclusion and that of other ethicists would be mere opinion without power to guide ethical nursing practice. Perspective provides a starting point to develop rigorous analysis; its role needs to be acknowledged if we are to evaluate its influence on various conclusions.
For me, intuition suggests that the value of preventing a 17-year-old’s death may have priority over the value of honoring her decision. This leads me to the insight that respect for autonomy is not a simple rule and that using decision-making capacity as the sole determinant in case analysis cannot always provide a fully satisfying resolution.
Starting with these insights, it is my task to give them analytic rigor. For example, I find the claim of respect for autonomy regarding a patient’s goals for treatment to be stronger than that of respect for autonomy regarding the patient’s factual interpretations—particularly when the factual interpretations seem weak.
I would further argue that treating decision-making capacity as a continuum—possible in this case because of the patient’s legal status as a minor—allows us the flexibility to see her judgment as flawed and overly influenced by age, without having to declare that she is out of touch with reality (as a finding on lack of decision-making capacity would require).
The message for nurses seeking to practice ethically may be to value and pay attention to your gut instinct. It may be a source of wisdom not found elsewhere. At the same time, it’s necessary to learn to give those perceptions rigor as you work within a sometimes skeptical system in pursuit of doing right by your patients.