“I would prefer not to”: Assessing competence to consent in a case of refusal of cancer treatment

Introduction

Since Beauchamp and Childress ¹ postulated the principles of bioethics, much has been discussed about situations that characterize ethical dilemmas of higher grandeur: questions about the beginning and the end of life, assisted reproduction and breach of confidentiality, and others. These issues are of the utmost relevance and illustrate situations which can be classified as limit situations. However, these are very particular situations and do not represent what is most commonly faced in the profession, in everyday bioethics. ²

When the clinical act involves conflicts between opposing conducts in professional duties, dilemmas emerge. These, as a rule, involve ethical issues concerning treatment decisions following diagnosis. Such conflicts tend to involve either the difficulty to view the disease in that particular case, which requires judgment adaptations from the physician, or difficulties to deal with the patient’s claims or diagnostic findings. Further, after the diagnosis phase, conflicts such as these emerge during the course of treatment when the case does not evolve as expected. In other words, situations in which the particulars of the case do not fit the scientific rationale underlying the clinical judgment and decision, which is accepted and valued by the professional.

In his study about the medical profession, a current North American classic in medical sociology and an essential reference for any investigation into the profession, Elliot Freidson ³ characterizes contemporary medicine as the exercise of “difficult judgment” in clinical diagnosis and “risky decisions” in therapeutic interventions and effects thereof. For this reason, the practice of medicine is seen as the critical competence to exercise sound judgment and to make good decisions, which requires a lengthy process of qualification and, in particular, a strict code of ethics.

Psychiatry is the area of medicine in which these possibilities intensify and become more evident, representing emblematic situations for the professional’s ethical conduct. In this context, the aim of this article is also to examine the psychiatrist’s peculiar position in these situations. Due to the requirements of the specialty, psychiatrists are frequently faced with very hard decisions in their clinical practice. After all, when the diagnosis is incapacity of judgment, the result may be legal interdiction or compulsory intervention. ⁴

For this reason, psychiatrists are usually more familiar with the emergence of such conflicts and dilemmas and with how to address them. Additionally, either due to this kind of professional experience or to the knowledge about mental suffering in general, ⁵ psychiatrists can act as advisors in clinical decision-making processes, supporting other professionals in situations of this nature, such as in consults requested by other physicians facing ethical dilemmas.

Case presentation

To exemplify an ethical dilemma, we will present a clinical situation within our institution involving decision-making capacity.

The case involved a 45-year-old female patient with no children, who worked as a house maid. She lived with her father and a brother, who suffered from schizophrenia, having lost her mother many years earlier.

Diagnosed with breast cancer at a primary care facility, the recommendation was immediate surgery.

Probably fearing the surgery and its mutilating effect, the patient abandoned treatment and did not return for consults. After a year, she returned to that primary care center because of a headache and was redirected to the oncological hospital, where she accepted clinical treatment, but refused to consent to surgery, which was mandatory in the opinion of the oncology team.

When asked about her fears and preoccupations about surgery, she laconically repeated “I would prefer not to,” despite the team’s forceful arguments, emulating Bartleby, the classic character of Herman Melville’s “Bartleby, the Scrivener: A Story of Wall Street,” who showed insubordination to his superior on the same terms.

An ethical conflict emerged when her doctors showed disagreement about the conduct: while the mastology team defended surgery without her consent, the oncological team refused this option and suggested a psychiatric consult. The psychiatric assessment also concluded that the patient was not competent to decide due to psychosis and should be submitted to surgery involuntarily, since she did not have any family support. In spite of that, the teams decided to refer the case to the forensic psychiatry team, which is specialized in evaluating decision-making capacity at our hospital.

The forensic psychiatry team evaluated the patient and discussed the case with all the professionals involved, concluding that the patient’s behavior was consistent with an emotional reaction of stress associated to the diagnosis of a serious medical condition, according to ICD. ⁶ The possibility of undergoing mutilation, which affects a woman’s self-esteem and sexuality, did not fully compromise her capacity of discernment in the situation presented and the psychotic symptoms mentioned were in fact dissociative symptoms.

This represented a diagnostic conflict between the medical teams, which could lead to extreme and polarized courses of action.^7–9 In an effort to prevent that, the forensic psychiatry team offered the following recommendations:

To ensure that the patient would continue receiving psychiatric treatment even if her decision was not to undergo surgery;

Discussion

The diagnostic process moves from particular cases and patients, to the generality of “this or that disease,” i.e. part of a group of cases which, as a generic condition, removes specificities and individual idiosyncrasies, corrupting a traditional premise of the Clinic, according to which “each case is one case.” ¹⁰ In the treatment, the professional will definitely have to reconsider the specificities of the case and take on board its contingencies. Failing to do that, the medical professional will put at risk both the patient’s adherence to the treatment and the chances of therapeutic success. As stated by Freidson, sociologically, medicine affirms itself as a profession because of its “pragmatism,” which makes medical professionals feel compelled to do something. ¹¹

The case presented illustrates that ethical conflicts in Psychiatry have even more complex contours than in other areas of Medicine, frequently putting the psychiatrist in situations that require several competences to reach a conclusion. And this because, in Psychiatry, the idiosyncrasies derive from three main factors: a higher degree of subjectivity in the diagnosis, intense interface with the values of society, and the fact that the patient’s autonomy can always be questioned. ¹²

First of all, the psychiatric diagnosis is more subjective because it follows symptomatological criteria which, strictly speaking, do not constitute a disease, but rather a disorder. The complexity of symptoms and the etiological multicausality of mental disorders also limit the role of supplementary tests in the psychiatric clinic. While other specialties increasingly rely on technology to base their diagnosis, in Psychiatry this is not the rule, and neuroimaging and other exams are used essentially to rule out organic etiology.^13,14

Accordingly, the diagnosis and conducts depend essentially on clinical evaluation and mental examination, which, in turn, vary not only according to the competence and experience of each professional (which is also the case in other medical specialties), but also the theoretical framework adopted by each psychiatrist. It is frequent to observe that, in the same case, psychiatrists with a psychodynamic orientation disagree with those with a biological-organicist orientation. ¹⁵

In the case presented, this was exemplified in the divergence between the opinion of the first psychiatric evaluation, which suggested involuntary procedure because she was not competent to decide, and the second evaluation, made by the forensic psychiatrist, which suggested that the mastology team should respect her will because she was competent to decide. It is important to note that these evaluations were conducted by psychiatrists who worked in the same university, ruling out conduct differences based on their formative qualities, but rather on different approaches to the same situation.

Second, decisions made by psychiatrists have a more radical interface with society than other areas of Medicine, ¹⁶ especially when we consider the consequences of some decisions. Because they directly influence an individual’s way of being and freedom to act, mental disorders and their treatment invariably have more dramatic implications for life in society. A psychotic presentation with homicidal ideations or a paraphilic disorder, for example puts the persons close to that individual at risk and society in alert, and creates the expectation that psychiatrists can help protect them. ¹⁷ Less serious presentations also have an impact in other areas: depression and alcoholism, for instance are among the main causes of absenteeism at work, interfering in productivity and the economy. ¹⁸

The patient described in this study is an iconic example of the implications of the importance of psychiatric assessments: on the one hand, a negative decision-making competence could induce the mastology team to adopt a patronizing attitude and decide, against the patient’s will, to perform the surgery; on the other hand, a positive decision-making capacity could voice the patient’s desire not to undergo surgery, respecting her choice despite its obvious implications for her life. The psychiatrist’s opinion will determine the conduct of the medical colleagues, and this underscores the increased level of care that psychiatrists should employ.

The third aspect that makes Psychiatry a singular specialty within Medicine relates to the psychiatric patient’s autonomy. It is clear that loss of autonomy is not the rule, but rather the exception, even in the most severe mental disorders. However, upon determination of the diagnostic, the psychiatrist will invariably be questioned, by the patient or their relatives, about the capacity of autonomy in the decisions that must be made for the best course of treatment.

The conducts proposed by the specialized team took into consideration the particular aspects of ethical dilemmas in cases that involve a diagnosis of mental health. With that, it was possible to support the colleagues in a decision that would, at the same time, ensure the patient’s autonomy and the continuity of the search for the best treatment of the disease and mental suffering associated with it.

In this particular case, a forensic psychiatry team, which is specialized in evaluating decision-making capacity, was involved in evaluating the patient’s mental capacity. However, often times it is not possible to have a specific team on board. In these cases, the clinician should not only address doubts about the patient’s decision-making capacity but also pursue the adoption of the best decision possible.

Conclusions

In medical courses, the subjective aspects of decision-making processes are often dismissed, as if they were not apt to influence the decisions “objectively” adopted by physicians in complex cases. Moreover, given the difficulty to make decisions in a life-threatening situation, clinicians often feel threatened by society’s moral judgment, by the reaction of class associations and by the Justice system, and their decisions can be arbitrarily influenced by this kind of concern. It is also worth noting that, albeit not explored in this article, emotional conflicts experienced by physicians toward their patients are extremely relevant. ¹⁹

The work of a physician is essentially to evaluate the health conditions of patients and decide the best course of action for a particular disease. In this process, uncertainty about the diagnosis, the doctor–patient opposing values, and even the social conditions of the case can influence the conduct. ^{20 , 21}

For this reason, not only forensic psychiatrists, but any physician should be equipped to deal with situations in which the pursuit of an optimum course of action is complex. In this context, professional qualification should include the knowledge and appropriation of systemized ways to deal with conflicts of values, or ethical dilemmas, whenever there is clinical uncertainty.

When called in to respond to an ethical dilemma, psychiatrists should not limit themselves to evaluating a mental disorder or the patient’s capacity of autonomy. It is imperative to also consider the personal values and conflicts experienced by physicians, which will provide for a better doctor–patient communication and facilitate the election of the best course of action in each situation.