Except under extraordinary circumstances, all adults have the legal right to make decisions about their bodies and their health care. these decisions should be made by capable, informed individuals after discussions with their physicians, nurse practitioners, and other members of their healthcare provider team. This basic principle of informed consent is critical for the safe, legal, and ethical practice of health care and human research in the US. It is based upon a society’s respect for independence and self-determination for all.
Informed consent involves shared decision making: The individual and the clinician each use their expertise to make healthcare decisions. The individual’s expertise is on their values, expectations, and goals of care and treatment; the clinician’s expertise is on diagnosis, prognosis, and treatment options.
What is informed consent?
Informed consent is a process of communication between an adult and their healthcare team, which gives the individual the legal authority to choose among medically reasonable treatment options for their health and illness.
Informed consent involves shared decision making: The older adult and their healthcare provider share their input to make the best possible healthcare decision for the individual. The individual shares their perspective on their values, expectations, and goals relevant to the disease and the treatment; the provider shares the relevant medical information about the diagnosis, the expected prognosis of the disease, available treatment options, and if they can help the individual meet their goals in life.
The shared decision-making process includes having discussions about the following:
- The older adult’s understanding of their diagnosis
- The older adult’s understanding of the severity or stage of their illness and how it can affect their health and wellbeing (prognosis)
- the various treatment or care options available
- the nature of the recommended tests or treatments
- the risks and benefits of each option
- the likely outcomes of each option (for example, is the recommended test or treatment intended to find a problem, cure an illness, prevent it from getting worse, and/or provide comfort?)
Informed consent does not mean that an individual can or should dictate their care alone. If an individual asks for tests or treatments that the healthcare providers consider useless or harmful, the healthcare team has a duty to use their skills for the individual’s benefit and not to harm them. In case of a disagreement between an individual and/or their caregivers and the healthcare team, meetings can be scheduled to discuss concerns.
There are several common misperceptions about people’s abilities to make decisions about their healthcare. For example:
- If an individual disagrees with the treatment recommendations of their healthcare provider, they may still have the ability to make healthcare decisions.
- Going against professional healthcare advice is not the only reason to want or need to assess someone’s ability to make healthcare decisions.
- If someone is not capable of making decisions in one area of life (for example, in their finances), they still may have the ability to make decisions in other areas of life (for example, decisions about a medical treatment).
- Individuals who may have cognitive impairment or dementia may still be able to make their own healthcare decisions.
- Individuals who have a diagnosis for a psychiatric disorder may still be able to make their own healthcare decisions.
- Depending on the diagnosis affecting a person’s judgment and insight, an individual who is unable to make their own healthcare decisions at a particular point in time may be able to regain their ability to make their own decisions again in the future. For example, an individual who may be undergoing an episode of confusion due to delirium or loss of interest due to depression may be able to improve after effective treatment and make healthcare decisions in the future.
- There are several experts (including geriatricians, primary care physicians, psychiatrists, and psychologists) who can assess an individual's ability to make their own healthcare decisions.
Healthcare professionals are sometimes asked to evaluate an individual’s ability to make medical decisions. If the healthcare professional finds that an individual has “impaired capacity” (lacks the ability to make informed decisions), it generally applies to specific types of decisions, not all decisions.. For example, an individual may be able to make decisions about their health care, but not about finances, or vice versa. This selective definition of capacity (often referred to as a "sliding scale") provides people with more protection and self-determination.
The term "diminished capacity" generally refers to specific types of decisions, not all decisions. For example, someone may be able to make decisions about their health care, but not about finances, or vice versa. This selective definition of capacity (often referred to as a "sliding scale") provides people with more protection and self-determination.
In situations where an individual may have impaired ability to make decisions, the healthcare team reaches out to the legal surrogate or healthcare agent to make decisions on behalf of the individual. Individuals who are unconscious or have severe mental impairment as determined by a healthcare professional, may lack the ability to make any decisions.
Assessing the capacity to make decisions
A healthcare professional can assess an individual’s capacity to make medical decisions based on the person's ability to:
- understand relevant information
- reason through treatment options
- understand the consequences of a decision
- communicate a decision
Decisions of Self-Care
A healthcare professional can assess an individual’s ability to make decisions regarding self-care and ability to live independently by assessing:
- the person's ability to care for themselves
- assessing the person’s judgment and insight, including the ability to seek or accept help needed to keep safe
A healthcare professional can assess an individual’s ability to make financial decisions based on the person's ability to:
- manage paying bills
- do calculations and keep track of money
Last Will and Testament
We judge the capacity to make decisions about a last will and testament based on a person's
- ability to remember estate plans
- ability to express logic behind choices
A healthcare provider can assess an individual’s ability to make decisions about medical care in case of an emergency or at the end of life. It allows a healthcare professional to assist an individual in completing advance directives, including a living will and nominating a healthcare power of attorney (someone to make decisions on behalf of the individual when the individual cannot communicate themselves)
Sometimes healthcare professionals use standardized tests to assess their patients’ mental status when the ability to make their medical decisions is in question. However, if a person performs poorly on these tests, it doesn’t always mean they lack the ability to make decisions. In these situations, extra attention may be needed to make sure the individual understands the risks, benefits, and consequences of the different options for medical care.
Additionally, decision-making ability should not be confused with so-called “rational” decisions. Decisions are often based on cultural, ethnic, or religious values and beliefs that vary from person to person. What is rational to one person might not seem rational to another. Therefore, an individual may have the capacity to make their own medical decisions even if the beliefs appear "unwise, foolish, or ridiculous" to the healthcare team or caregivers.
Understanding an individual’s values and goals in life can be critical in determining their ability to make decisions. A person has the right to refuse a treatment, as long as they are fully informed of the risks, benefits, and alternatives of a given treatment. This is the case even if refusing treatment may shorten their life.
Last Updated July 2020