The term "informed consent" is used a lot in mental health care. Those two little words are a big, and complicated, deal. In this blog post, I unpack the term "informed consent" and all the things that come along with it: dignity of risk, duty of care, autonomy, incapacity to give informed consent, and what it means when you take away someone's right to choose. I examine the topic of informed consent from the angle of the person going through a serious mental health crisis.
What is informed consent?
Picture yourself in the office of a psychiatrist.
You're there because of constant, deep depression. You want to be assessed and you want to try medication. You and the psychiatrist agree that medication may be a good solution for the short-term. The doctor explains that it might relieve you of the insomnia, moodiness, and angry outbursts you've been experiencing. The doctor also tells you it might cause weight gain and high blood pressure.
You are informed of the pros and cons. After thinking it over, you consent to taking the medication and the doctor prescribes it. That is a simple example of informed consent.
Elements of informed consent
Informed consent is an autonomous and voluntary act.
Autonomy refers to your ability to have the freedom to act independently.
Voluntary means you acting of your own free will.
According to Ahmed Bait Amer in a 2013 article, informed consent is built upon 5 core concepts:
Voluntarism: when you act of your own free will, free from coercion and manipulation.
Competency: more of a legal term, this refers to your ability to make decisions based upon your own judgement.
Disclosure: this is an important one. It refers to information being shared with you. When professionals are communicating health information to you, they are responsible for communicating health information in a way you can understand, taking into account your level of comprehension and cultural lens.
Understanding: along with disclosure, understanding is critical to informed consent. There are many ways professionals can test whether you understand the information you have been given. The teach-back method is a proven method to test understanding and reframe information in a way you will retain and comprehend.
Decision: the moment you give a professional permission to begin a treatment.
These 5 core concepts of informed consent operate fully when you are emotionally, mentally, and behaviorally healthy and functioning. So what happens when you are not functioning well in those ways?
When someone is incapable of giving informed consent
Consent is necessary for the delivery of ethical psychiatric treatment and care. The question of when to judge someone incapable of giving informed consent is important territory to understand for anyone giving or receiving mental health care.
When you are legally deemed incapable of giving informed consent, your ability to make autonomous decisions is taken away, at least for a short while. To deem you incapable of giving informed consent, the following is evaluated:
Your ability to make choices
Your ability to retain and repeat information
Your ability to appreciate (comprehend) that information
Your ability to rationally process that information
There is no gold standard for assessing these capabilities. But there are many tools psychiatrists and others use to measure each area. You should consult with an attorney if you are indeed seeking to limit your family member’s right to autonomous decision making.
Dr. Raymond Rupert, MD, MBA of Rupert Case Management in Toronto, Ontario comments on the difficulty around assessing capacity:
"When an individual is clearly at risk of harming themselves or another and appears out of control, then the decision about capacity is relatively easy. And the legal and other processes work well.
However, when the individual appears to be capable, articulate and convincing but engages in self harm, then this situation is much more complex. The legal and other processes do not work well.
This situation requires a multi-disciplinary team with the experience and expertise to engage with and build trust with the patient and the family. The process of change takes time. Patience and persistence are the necessary qualities for helping this patient and the family."
The power of a care advocate
Mental health conditions such as anxiety, obsessive compulsive disorder, depression, or psychosis may hinder your ability to understand the information being given to you. These challenges may also hinder your ability to make judgement calls and sound decisions.
People with major mental health issues tend to be in a vulnerable position. There is a power dynamic that exists between professionals and the person to be helped. According to Amer, the negative effects of this power imbalance can be addressed by having a third party present during your care appointments.
This third party person can be a family member or advocate. The advocate helps to facilitate communication between you and the professional. The advocate participates by listening in an active manner, in translating health information into terms you can understand, and in helping you communicate information, questions, and concerns to the professional.
Legal supports for getting someone appropriate treatment
Writing a psychiatric advance directive (PAD) can help you get the care you need when you are facing a crisis. A PAD is a written document that describes what you want to happen if at a future date you are deemed incapable of making decisions for yourself based on your mental status. Mary Ellen Copeland, Ph.D. has also developed the Wellness Recovery Action Plan (WRAP) which is a plan you create to help you recover and stay well.
Establishing a health care proxy can help you navigate the mental health system more smoothly if and when you are facing a mental health crisis. A proxy can be established should a time come when you are deemed incapable of making decisions for yourself; you give this person the authority to make decisions on your behalf.
Informed consent is about respect for your autonomy
Dr. Mark Komrad, MD, is an ethicist and psychiatrist. His is also the author of You Need Help: A Step-by-Step Plan to Convince a Loved One to Get Counseling. When it comes to the important topic of informed consent, he believes:
"Informed consent is a concept that is based on respect for a person’s autonomy.
However, autonomy is a concept that presumes rationality to engage in authentic self-determination. Severe mental illness, however, can impair rationality, and hence diminish autonomy. Therefore, there are times when illness impairs a person’s capacity to participate in informed consent.
At that point, society and the medical system have a duty to engage in a very specific kind of therapeutic paternalism— the sole purpose of which is to try to restore a person’s autonomy and gradually bring back the capacity for informed consent.
That is the only legitimate and compelling purpose of such paternalism— to restore autonomy, or at least to maximize it as much as possible. That is why psychiatric treatment sometimes has to delay informed consent, until the capacity to deploy it is restored."
Duty of care vs. dignity of risk
For those working in mental health, it may be helpful to frame the topic of autonomy on a spectrum. On one end of the spectrum is your duty of care (do no harm) and on the other end is the goal of maintaining the individual's dignity of risk.
Patricia Deegan, PhD, a disability-rights advocate, psychologist, and researcher said,
"People need to have the 'dignity of risk' and the 'right to fail'."
Please take a few minutes to watch this wonderful video from The Mental Health Recovery Institute in Australia.
If you have any questions or comments about this topic, please do not hesitate to leave your thoughts in the comments section below. And as always, if you would like assistance navigating the process around informed consent, advanced directives, or health care proxies, do not hesitate to contact Virgil. We are happy to connect you with trusted attorneys who are experts in these matters.