Now that we’ve had the chance to explore We’re Gonna Die in detail via tablework, we’re going to start using this blog space to address a few big picture themes and questions. First up: medical ethics. We’ll be engaging this topic in several parts.
The Singer in We’re Gonna Die tells a story of how her father enrolled in a medical trial for a new cancer treatment, the hope this enrollment sparked, and the devastation of not receiving the treatment in time.
There’s much to be explored in the realm of medical trials, but the purview of the Singer’s experience is limited to that of a family member, trying to care for a loved one in pain, and working to understand what seems to be an utterly perverse turn of events: a drug that can help that is being withheld because the parameters of the trial must be upheld.
The question she and her family ask: how is it possible that the prospect of saving a life is less important than the rules of the trial?
The question the prompts for us: How do medical codes of ethics guide doctors and participants in these cases?
The journal Current Oncology sought to address this question, especially when it comes to the “informed consent” of trial participants.
Informed consent is arguably the most important ethical dimension of research on human subjects, and yet it is arguably the most difficult to truly achieve 10,11. Fully informed consent has three fundamental components 12:
- Adequate disclosure of information
- Full patient capacity to comprehend the information
- Voluntariness or freedom of the patient to make a decision
For a [randomized clinical trial] to be justified, a state of clinical uncertainty about the relative merits of a trial’s arms—that is, the groups or methods being compared—must exist. This requirement alone is a difficult concept for most patients to grasp, and it is a sufficiently nuanced and sophisticated concept that even researchers exhibit inconsistency in grasping this very fundamental premise behind clinical research. A priori, a patient is entirely unable to know in advance whether participation in a study might be of personal benefit. The clinical investigator must be completely honest about presenting the experimental nature of the treatment being offered and must avoid propagating the widespread therapeutic misconception in which the patient believes that an offer of an opportunity to access a beneficial therapy is being extended.
Furthermore, clinical investigators cannot possibly predict every foreseeable complication of an experimental therapy, because previously unknown and unencountered complications can arise in the course of clinical research.
This next point seems incredibly important (boldface emphasis mine):
Full capacity is arguably impaired in most patients being confronted with the daunting task of trying to digest all the information concerning a complex trial and making a decision that may have an impact on their quality of life or very survival. Voluntariness may also be adversely affected by a myriad of forces. In the final analysis, the most important component in clinical decision-making and the consent process for many patients may simply be their trust in the clinical investigator.
Is the problem of impaired consent present for the Singer’s father? We can’t know for sure, but I’m interested in how consent connected to the idea of hope — perhaps, even, false hope.
Is false hope a necessary byproduct of participation in such a trial? And, like the other types of suffering explored in We’re Gonna Die, is this an inevitability of life itself?
More on Medical Ethics in part 2, coming soon.