Mental Illness and Informed Consent
Kylea Halbrook-Gilbert
Abstract
Mental illness and informed consent bring together the concepts of competency and research ethics. Mental illness includes conditions that affect a person’s thinking and behavior such as schizophrenia, depression, and anxiety. Informed consent is the idea that a patient is sufficiently knowledgeable about their medical care before making decisions on that medical care. There is a vast amount of research that questions the correlation between mental illness and medical decision-making. The purpose of this paper is to explore the relationship between mental illness and informed consent and provide possible schemes to improve it. I would like to understand more about the difference between any mental illness and serious mental illness, and this impact on decision-making. Such as the decision-making difference between someone with mild anxiety and someone with schizophrenia. This will be done by reading papers about the topic, relating, and deducing from the information. After looking through various resources, it is apparent that there is a belief that patients with mental illness are fully capable of giving informed consent. This topic is significant because allowing a person to have full autonomy promotes ethics in the medical world.
Keywords: mental illness; informed consent; competence; cognition; decision-making; medical; schizophrenia; bioethics
Introduction
Full bodily autonomy is a fundamental human right. However, how does this concept apply to the relationship between mental illness and informed consent in the medical world? This idea has been regularly under debate since its first major break in 1957 (Wadlington, 1984) and appears to have interim settled on conflicting views, where some believe in the routine informed consent process, such as that regularly practiced today, and others focus on a more case-by-case and safeguard addition basis, like Hougham 2003 and Anderson 2007. To examine this concept, the foundations must be defined. Mental illness is “significant and persistent distress and impairment of functioning, with causes that are psychological or psychophysical” (Layard, 2014). Simply, mental illnesses are mental conditions that impact a person’s function, such as one’s thinking and behavior. There are different variations and degrees of mental illnesses. A generalized classification of mental illness divides them as mild and severe. Often based on individual patients, the method of categorizing between the two is focused on the number of symptoms, distress by symptom intensity, and impairment degree, amongst other factors (Zimmerman, 2018). Mild mental illnesses are generally identified by a low frequency of symptoms, low distress, and low impairment, while severe mental illnesses have a high frequency of each. Mild depression and mild anxiety are examples of mild mental illnesses. Schizophrenia and severe depression are examples of severe mental illnesses. This paper will have a strong focus on informed consent in cases of depression and schizophrenia. This paper also is mainly focused on mental illness and informed consent legislation within the United States, as legislation differs between countries. Although resource research may have been conducted in a different country, such as Anderson 2007 in Canada or Van Staden 2003 in South Africa, their work doesn’t strictly adhere to certain legislation, and the pattern in their research can be applicable to what we are focusing on in this paper. I believe that the degree of mental illness needs to be considered, and safeguards used when mentally ill patients are giving informed consent. Hence, in this paper I will first focus on a comparison of comprehension between control groups and mentally ill groups. Then, I will show the importance of using safeguards when mentally ill patients are giving consent. Finally showing that safeguards and additional measures need to be implemented in the informed consent process with mentally ill patients.
The Difference of Comprehension between Control Group and Mentally Ill Groups
Non-mentally ill patients, aside from incapable and underage patients, can give comprehensive informed consent. They meet the three criteria for informed consent (Appelbaum, 1995), one being that patients must be competent. Informed consent is based on three requirements (Appelbaum, 1995). One is that caregivers are responsible for giving patients information about the entirety of the procedure, including benefits, pitfalls, and the ability to waive the procedure. Next, is that the patient is allowed to decide without any external pressure. Third is that the patient needs to be competent (Appelbaum, 1995). These three factors all need to be met when a patient is giving consent, and if not, they are not capable enough to do so. Mental illness impacts cognition, thus competence, and such, their ability to give consent. To be competent is to be able to communicate a choice, to understand relevant information, to appreciate the situation and its consequences, and to manipulate information rationally (Appelbaum, 1995). Patients with diseases unrelated to the mind can understand the information given to them. This trend was seen in two experiments done by Grisso and Appelbaum, 1991 and 1995. Patients who are hospitalized, but not due to a mental illness, for ischemic heart disease (IHD) were experimented with. Those with IHD were subject to a test that assessed their comprehension of information that was given to them about disclosure, consent, and medication. Patients with IHD performed better on these various comprehension tests when compared to mentally ill patients. They were able to better recall information about their disorder, medication, side effects, alternative treatments, and more disclosure details (Grisso, 1991 and 1995). Patients who were medically ill had slightly lower comprehension test scores compared to patients with no disease (control group). Patients with no disease and who are healthy can even better understand the information given to them. Non-ill patients were also subject to the same test as the medically ill patients, which focused on comprehension of information concerning related disclosure and medication. However, the non-ill patients were able to recall information slightly better than the medically ill patients (Grisso, 1991 and 1995). These two trends between medically ill and non-ill patients reveal that patients without mental illnesses can properly retain information. This also shows that being within a physical hospital setting minimally impacts a patient’s comprehension and retention ability.
Mentally ill patients are less capable of giving fully comprehended informed consent. Mentally ill patients are expected to have a slight reduction in competence due to the mental illness impacting their cognition. Having a lesser competence impacts their ability to give consent since competence is a necessary factor of informed consent. Patients with mild mental illnesses are less capable of understanding the information given to them. An example of a mild mental illness would be mild depression, which was focused on in the same study (Appelbaum, 1995) that looked at non-ill, medically ill, and severe mentally ill patients and competence. The non-ill group was a control group that had no illnesses, the medically ill group had heart disease, and there was then a group with depression and a group with schizophrenia. Those with mild depression comprehended less than those with IHD and non-ill patients when they were given the same form that tested their ability to retain information about disclosure, medication, side effects, and similar information (Grisso, 1991 and 1995). In patients with depression, the difference in scoring between them and non-ill patients was moderately less. Patients with severe mental illness are even less capable of understanding the information given to them. When severe schizophrenic patients were tested on competence using a medical form, they generally performed significantly less than the non-ill control group and other tested groups (Grisso, 1991 and 1995). It has also been noticed that patients with schizophrenia exhibit “learning and memory deficits”, “lower levels of comprehension”, “marked impairments in decisional capacities”, and are generally “non-compliant with their medication regimens because of side effects” (Anderson). All these factors combined must uplift concern about a person’s capacity to make a rational decision about their health. This point was again supported by another study (Kaup, 2011) done with schizophrenia patients. In a further study, patients with severe mental illness, schizophrenia, tended to forget important pieces of information crucial to medical procedures, when compared to controls (Kaup, 2011). These schizophrenia patients were subject to an interview about medications, and they made a good number of errors in areas relative to comprehension. This shows that mild and severe changes in a patient’s mental state correlates with varying decreases in competence, which reduces their ability to give consent. If a patient is unable to absorb an equal amount of information as a non-ill patient, the stated patient should not be able to give consent without the usage of additional safeguards. The purpose of this is not to reduce the right of bodily autonomy of the patient but to ensure that patients have full mental power over their decisions.
The Significance of Safeguards on Mentally Ill Patients Competence
Safeguards and additional measures should be used when mentally ill patients are giving informed consent. These should be used in addition to the already existing three requirements of informed consent. This is the norm now, and this does not align with the specific needs that mentally ill patients require, examples of which will be shown further in this section. However, they should not be considered a reach, such safeguards and other measures should be the normality. Safeguards and additional measures are beneficial for many reasons. These safeguards protect patients from exploitation in medical research. Safeguards also aid in protecting patients in a ranged manner, instead of relying on their single decision at the beginning of a research study. There are many types of safeguards that can be used during each section of the consent process. For example, when a physician is giving information to the patient about the procedure, medications, benefits, and waiving (which is one step of the consent process), the information should be presented in an enhanced manner (Anderson, 2007). Enhanced meaning to alter the text to be more structured, verbally reading the information, and allowing for frequent questions (Anderson, 2007). Being provided with information in a manner that appeals to that patient’s specific illness is providing the best care for that patient. With the acquisition of these safeguards and measures, a patient’s ability to give informed consent should be further based on certain criteria and a case-by-case basis. Schizophrenia patients may require different enhancements compared to depressed patients. In the research done by Appelbaum and Grisso, patients with Schizophrenia had lower competence scores than those depressed (Grisso, 1991 and 1995). When delivering information to a patient with schizophrenia, the information presented may be more enhanced, while the deliverance to a mildly depressed patient will be slightly enhanced. A case-by-case pattern should be practiced. However, the use of these safeguards needs to be in addition to the standard measures of informed consent (Anderson, 2007). Instead of thinking about safeguards being added to the common consent process, they should be actively included in the process itself for all patients, non-ill and ill; it becomes the regular process. If not focused solely on the patient’s benefit, safeguards also protect the medical institution’s credibility from exploiting their patients. By being as inclusive as possible and maximizing a patient’s resources, there are only a few resources left that a medical facility could provide to appeal to the patient. Overall, consent is not linear. Based on what we know about how mental illnesses impact patients, each time consent is needed, physicians should work with patients to figure out a path, by utilizing specific safeguards, that is optimal for that patient.
Resistance against Safeguards for Mentally Ill Groups
Although there are many who support the idea of providing more support in the informed consent process for the mentally ill such as Hougham 2003, Anderson 2007, and Grisso and Appelbaum 1991 and 1995, there are some who state that further aid is not required, such as Okai 2007. Some state that additional measures are not required since mentally ill patients are cognitive and competent enough to give informed consent. When compared to non-ill patients and medically ill patients, mentally ill patients, specifically those with depression and schizophrenia, had lower scores of competence (Grisso, 1991 and 1995). All patients were given a similar test that focused on disclosure, medication, and consent. The patients with depression performed slightly less than the control and medically ill group, while those with schizophrenia had a trend of performing even lower. It is viable that mildly mentally ill patients can give cognitive informed consent, as those with mild depression only performed slightly lower than the control. However, severely mentally ill patients should be evaluated on their specific illness or by a case-by-case basis. It is also believed that safeguards are not needed, require an unnecessary allocation of time and resources, and impact the progress of the research. Largely meaning that safeguards are a waste of time and energy, allegedly. To this, it should be noted that safeguards should be included within the already set criteria for determining if a patient can give informed consent. Instead of being an “extra” step, it should be included in the standard procedure, and thus be considered as standard (Anderson, 2007). Safeguards are more beneficial than not. Although a small number of resources are further used, usage promotes cognition in mentally ill patients. Such as those with severe mental disorders, who were teachable when it came to understanding consent (Hougham, 2003). If this practice becomes routine, then there is no such thing as a waste of time or energy, because it is the standard. Wanting to maximize a patient’s decision on their bodily autonomy should not be considered a waste of time or energy since this is a fundamental right. There is also a focus on how mentally ill patients may be viewed as receiving special treatment when provided safeguards. Mentally ill patients should be provided with “special treatment” because they require it. We want to best support these groups. With this, these safeguards should be implemented not as “in addition”, but simply as another measure that all patients must go through. For non-ill and medically ill patients, this additional step will not matter, however, for mentally ill patients, this will allow for them to gain full control over their medical decisions. Mainly, safeguards, such as enhancing information based on the patient’s illness, are necessary for all patients since they allow for a boost in the patient’s bodily autonomy.
Strengthening the Relationship between Mental Illness and Informed Consent
There are several ways that we can strengthen the relationship between mentally ill patients and informed consent. The first is to enforce the natural steps of informed consent, and then apply safeguards. Previously, it was stated that safeguards should not be considered as additional. However, it has been noticed that during the first implementation, it will naturally be considered as additional because it differs from what has been average so far. Over time, the usage of additional safeguards will be considered natural. So first, we would follow informed consent steps, which include information being given to the patient, then the patient decides without external pressure, and finally, the patient must be competent (Appelbaum, 1995). Following this, safeguards are added, such as some portions of these steps being enhanced. General safeguards should not be used, instead, they should be pliable to the patient. This is the next thing that can be done to better the relationship. The natural steps, including safeguards, should appeal to the specific patient. If the patient has a mental illness that impacts information acquisition, the presentation of the information should be changed to be clearer and more direct. A last, simpler, way to support this relationship is to apply innate human feelings. It is common practice to stray from feelings in the medical world, however, feelings are prevalent for a reason, and they should be used to better the system. Approaching patients with empathy and compassion forms a connection between the patient and the physician. This connection helps patients better trust physicians, and it helps physicians remember that they are working with another human. It is easy, as a medical provider, to forget that there is a person behind the illness that they are treating. The entirety of this paper is a call to be more in touch with what another person is going through, and to be more empathetic towards one another. There are many ways, within the system itself and within the people themselves, that we can reform the connection between mental illness and informed consent.
Conclusion
It is important to understand that there is a rift between mental illness and consent that needs to be reevaluated. Patients with mental illnesses have exhibited trends that show lower cognition compared to non-ill and medically ill patients. This implies that there should be more resources for those with mental illnesses, such as safeguards that may enhance certain portions of the informed consent process. Applying additional measures, which eventually should be considered the norm, while also practicing empathy in the medical environment will grant mentally ill patients to have a stronger sense of power over their bodies. A second look at mental illness and informed consent is important because full bodily autonomy is a fundamental human right.
References
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Reflections 