A patient's right to the refusal of care is founded upon one of the basic ethical principles of medicine, autonomy. This principle states that every person has the right to make informed decisions about their healthcare and that healthcare professionals should not impose their own beliefs or decisions upon their patients. Autonomy does not exist alone; there are other medical principles that help guide care. Beneficence requires that actions taken by healthcare professionals be for the benefit of the patient. Non-maleficence is the principle that embodies "do no harm," requiring health care providers to take steps to ensure their patients and society at large are not harmed by their actions. Justice requires that the benefits and risks associated with healthcare should be distributed equally amongst the population without bias. Each principle has a role when navigating the difficult situations where patients or their family members may be refusing medical assistance.
With those principles in mind, the first step in any situation regarding the refusal of care is to determine the patient's capacity to refuse. Capacity is defined as a person's ability to process information and make an informed decision about their care in a way that is in line with their beliefs, values, and preferences. Capacity is a crucial factor to consider when a patient is refusing care, as it is used to try to differentiate between someone who's decision making may be impaired and someone who's exercising their right to autonomy. Please note that capacity differs from a similar concept called competence. Capacity is the definition which the medical community utilizes to assist with healthcare situations and choices, whereas competence is the legal assessment of a patient's ability to make medical decisions that can only be decided by a judiciary system. Competence applies to more than just medical decision making, including abilities to enter a contract or prepare a will, and usually, an individual needs to be proven incompetent with clear and convincing evidence.
Capacity has four accepted assessment components. First, a patient needs to express understanding about their medical situation, the decision they are making, and any risks or benefits that are associated with that decision. The patient must also express a clear, consistent choice without frequently changing their mind. The third component of capacity is appreciation, defined as when a patient is able to apply the understanding of their medical situation to their own life. If a patient is able to explain the situation but does not understand how it applies to their situation, they lack appreciation. This can take the form of being able to describe what a heart attack is, but being unable to appreciate that they are having one despite being presented proof. The final aspect of capacity is reasoning, which is the patient's ability to infer the consequences of their decision and to express an explanation as to why they would rather refuse care.
Many issues or special circumstances may arise when determining the capacity of a patient to refuse care, and there are several special populations of patients with unique rules and exceptions.
Patients under the influence of alcohol or drugs may lack the capacity to make their own medical decisions. This can vary depending on the degree of intoxication, and if there is uncertainty about a patient's level of intoxication, the typical assessment of capacity can be performed. Depending on the state, laws exist to allow for involuntary hospitalization of intoxicated patients at risk of self-harm, to balance beneficence and non-maleficence in a setting where autonomy has been compromised. The laws vary by state but generally allow for temporary involuntary hospitalization and treatment until the patient is no longer intoxicated, and any medical illnesses affecting capacity have resolved.
Another unique patient population to consider is the psychiatric patient. Psychiatric patients' medical conditions often impede their capacity to refuse medical care. However, some research has shown that simply carrying the diagnosis of psychiatric diseases, such as schizophrenia, does not preclude patients from having capacity. This emphasizes the importance of always performing a full assessment of capacity for each psychiatric patient, regardless of their disease process. The approach to the psychiatric patient refusing medical care is relatively straightforward; however, actually assessing the patient may be challenging. If a patient's illness is affecting their capacity to refuse care, and they are considered a danger to themselves or to others, the healthcare provider is expected to treat the patient regardless of their refusal. The laws regarding these situations vary state by state, but typically limit such treatment and/or involuntary holds in a medical facility to situations in which the patient is a danger to themselves or others, or if they are unable to provide for their own basic needs. These holds also limit the amount of time allowed for the hold. Typically the assessment of the need for involuntary holds or advanced treatment is reserved for mental health professionals or physicians but may sometimes extend to other professionals such as members of the police force. Note that in many states, any adult may officially initiate the process by requesting an assessment to be performed by one of these professionals. Please be aware of the relevant state's laws and policies regarding these types of patients.
Hospice and End of Life
Another notable population of patients who refuse care includes patients on hospice, or with advanced directives such as a Do Not Resuscitate (DNR) or Do Not Intubate (DNI) order. Research shows that at least 42% of adults greater than 60 years of age needed to make decisions about treatment in the final days of life, but 70% of those adults were found to have impaired capacity. Additionally, further research has indicated that when clinicians and relatives of a patient are asked to determine a patient's capacity, there is only a modest agreement between the two assessments. In these types of situations, patients may have made plans with medical and/or legal professionals to determine their preferences in case they are unable to communicate those preferences in the future. These decisions may or may not have been made in discussion with and including input from their family.
Ideally, patients with these advanced directives should have no difficulties fulfilling their preferred medical decisions; however, there are multiple situations where this may present a problem. Sometimes these advanced directives are not readily available, or the provider may not know if a patient has a directive, especially if the patient is unable to relay the information themselves. In these cases, it is prudent to provide appropriate medical care whenever there is doubt regarding a patient's medical directive. Another potential issue is when family members of a patient with an advanced directive are not aware of a patient's wishes, or perhaps do not agree with them, and may attempt to intervene in the medical decision making. All health care providers need to keep the patient and the patient's wishes as their primary focus, and the medical decision making in these scenarios should be guided by the information that is readily available. In the setting of an impaired elderly patient, healthcare professionals should first defer medical decision making to any individual legally appointed as the patient's medical decision-maker, such as medical power of attorney.
If the patient does not have such a legally appointed individual, medical professionals should determine if a living will or other documented medical directive is available. If no directive or medical power of attorney exists, and the patient is unable to communicate their directive, referring to family members is appropriate and expected for decision making. Ideally, shared decision making between family members and the healthcare provider team is preferred, as it may prevent conflict between the medical team and the family members of the patient. This shared decision making should focus on what the patient would want to be done for them in this particular circumstance. Keep in mind that a patient with any advanced directive, even an individual enrolled in hospice care, always retains the right to change their mind and accept further care.
While it is important pediatric and adolescent patients are included in their healthcare decision making, patients under the age of eighteen in the United States do not have the legal right to make medical decisions for themselves and require parental consent for medical care, apart from three major exceptions. First, if the minor has been legally emancipated, they have full medical decisions making power in any and all situations. Second, all states recognize a minor's right to seek care without parental consent for any healthcare regarding sexually transmitted infection testing or treatment, pregnancy prevention with contraceptives, and pregnancy/prenatal care.
There is also a mature minor doctrine, which states that minors who present the intelligence and maturity to make healthcare decisions for themselves can be deemed legally responsible to make their own medical decisions. However, it is important to note that mature minor situations are rarely used in the medical field; they are instead largely used within the legal community and can vary widely from state to state. For minor patients, typically, the parents and/or guardians of the patient make any required medical decisions and may choose to refuse care. Importantly, if a pediatric patient requires emergent care and the parent is either absent or refusing, healthcare providers are expected to provide the emergent care regardless of the refusal, and are legally protected in this situation. Additionally, if there is any suspicion of child abuse, during a medical evaluation involving a potential refusal of care, medical professionals are required to report their suspicions to the appropriate government agencies for investigation.
Clinically determining capacity can sometimes be problematic. Many clinicians and other health care professionals opt to use a focused history approach, targeting the components of capacity with open-ended questions. Some example questions for each of the components are listed below.
Can you please tell me what you know about what's happening right now?
What do you think is causing your symptoms?
Do you have any questions about what we've discussed?
Expressing a Choice
After discussing the options, which option sounds best for you?
Are there things you wouldn't want to be done medically?
Is there anyone you with whom would like to discuss your options?
Do you think you have [X] medical condition? Why or why not?
Do you think [Y] treatment would benefit your condition? How?
Do you think [Y] treatment carries risk? How?
If you don't mind me asking, why would you prefer your choice?
How is your condition going to affect your daily life?
What is going to happen if you don't receive care?
Additionally, there are several validated tools available to help standardize decision-making capacity, which typically are used for research purposes but may provide some benefit to providers in clinical scenarios. The most well-known tool is called the MacArthur Competence Assessment Tool for Treatment, a privatized tool available for purchase from the publisher. This instrument provides a set of questions to guide the interview and has been shown to be efficacious. Additionally, there are public tools available such as the Assessment of Capacity for Everyday Decisions, which is a point-based system that allows providers to perform decision-specific assessments. Keep in mind that regardless of what questions or tools are utilized, each situation is unique and may not necessarily be amenable to an algorithmic approach.
If a patient has been found to lack capacity, the next steps in management depend on the individual situation. For example, a patient who is intoxicated and expected to recover from their ingestion relatively quickly warrants a different approach than an elderly patient with Alzheimer disease, who is not expected to see great improvements in their cognitive status or their capacity. When approaching an impaired patient, consider the gravity and severity of the circumstances, and the expected duration of the impairment.
The urgency of the decision must always come first. If the decision is emergent and risks an impaired patient's safety, then the decision making usually falls on the healthcare professional in charge. Barring emergent conditions, efforts should then be made to either seek out the patient's directive or a proxy who can make medical decisions for them. While this task is being performed, any potentially reversible causes for the patient's condition should be identified and treated. This includes attempting to redirect the patient if their capacity impairment is not severe or reassessing the patient at a later time if their lack of capacity is expected to resolve relatively quickly. This can happen in disease processes like delirium where a patient's confusion and general capacity may wax and wane depending on the time of day, where they are, or other such circumstances.
If in the rare case, no proxy or advanced directive is available, typically healthcare professionals and/or an institutionally designated ethics committee will make decisions for the patient in the short term. If the patient requires long-term decision-making assistance, formal guardianship can be assigned by a court of law.
In any healthcare scenario, the primary responsibility for healthcare professionals is to ensure the patient receives the best possible care. Refusal of care does not indicate the end of that responsibility. Healthcare providers still need to advocate for the decisions and wellbeing of their patients even when those patients have refused care.
If a patient has been determined to have the capacity and has refused care, healthcare providers still play an important role. In addition to assessing capacity, it is also the healthcare professional's responsibility to share their knowledge, experience, and advice regarding the medical decision at hand. The goal of this effort may not be to change the patient's mind, or pressure the patient into accepting care, but rather to ensure the patient is making an informed decision, knows their options, and has their concerns addressed. Sometimes filling gaps in knowledge or reassuring a patient about the risks of a procedure can positively influence patient decisions and facilitate better patient care.
In this spirit, it is important not to consider a patient refusing care as an adversary. While they may be perceived as uncooperative, these patients typically are making these decisions in an unfamiliar, stressful environment, and sometimes the best care a healthcare professional can provide in those situations is to allow the patient to maintain their autonomy.
These strategies, along with a willingness to discuss medical decision making with patients, are necessary and applicable for all members at any training level of the healthcare team. From the first encounter, a patient has within a healthcare system, whether involving an emergency medical technician in the field, a nurse in the emergency department or a physician in a clinic, the patient is required to make decisions regarding their care. Providers across disciplines must communicate with each other regarding a patient's capacity, their preferences or directives, and any proxy decision-makers to ensure proper, efficient care. This communication can have crucial effects on a patient's healthcare course and make a tremendous difference in a patient's ultimate physical and emotional wellbeing.
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