The opposite of informed consent is uninformed consent, not informed refusal.
Informed consent is from the patient’s perspective. If informed consent was from the provider’s perspective, it would be labeled “informed compliance.”
Informed refusal is the health-care industry phrase to describe a patient’s refusal to follow the provider’s order or recommendation. Informed refusal is from a provider’s perspective and is therefore paternalistic and not patient-centric. Because informed refusal is from the provider’s perspective, it aligns with informed compliance. However, health-care providers do not typically use that term.
Informed refusal is unconsciously or consciously accompanied by providers’ negative value judgments, which in turn influence and affect the patient.
Just as the medical lexicon is changing regarding describing patient noncompliance as “patient nonadherence,” the labeling of “informed refusal” can be changed to “informed declination.”
The term “informed declination” aligns with patient autonomy, is patient centric, and will likely align with organizations’ missions, visions, and values because these declarations are generally written with the patient as the focus and at the core of the mission, vision, and values.
Patient noncompliance refers to a deliberate or intentional refusal to comply with the provider’s order or recommendation. Patient nonadherence implies that the patient is not able to follow the order or recommendation. Nonadherence opens the door to the reason the patient is unable to follow recommendations. There are many individual, social, legal, environmental, and economic explanations for nonadherence, including the following:
- Financial issues
- Poor communication between provider and patient
- Patient mistrust of provider
- Inadequate education of condition and recommendation/procedure
- Unpleasant side effects of medication
- Family issues or turmoil
Recognition of social determinants of health[1] and health inequalities related to an individual patient or a patient population can enable a more productive and constructive dialogue between provider and patient and result in legal and environmental resolutions that may be at the root of the nonadherence.
Broadening the perspective that the healthcare system is the key driver of health and health outcomes to recognize that non-health-related factors significantly influence the patient’s ability to adhere to a provider’s recommendation can expand avenues that a provider can take with a patient. For example, a patient with recurrent asthmatic attacks may decline to consent to a diagnostic procedure or treatment intervention if the patient knows that the asthmatic attacks occur because of indoor environmental triggers (e.g., mold, vermin). Unless the trigger is eradicated, the patient will have recurrent asthmatic attacks. In these cases, the provider can contact social services or the local Medical-Legal Partnership.[2] These resources will be able to determine whether there is a state law that compels landlords to eradicate mold, vermin, or other asthma triggers; assist the patient in the proper notice and procedure to compel; or provide legal representation to sue a landlord.
Informed declination can be used to describe the patient’s perspective. Changing the label from informed refusal to informed declination moves the informed decision from a dualistic exercise of either complying or refusing, which eliminates patient autonomy because the label implies “disobedience” to an exercise where a patient has autonomy.
| Label Implications | |
| Non-Compliance/Informed Refusal | Non-adherent/Informed Declination |
| Paternalistic | Patient-centric |
| “Closes the door” | “Opens the door” to discussion and exploration and enables options so the patient can do “X” in order to get “Y” |
| Patient submission: Provider’s orders/recommendation leads to patient’s decision | Patient autonomy: Patient decision has causal power |
| Use of these terms accompanied by negative value judgments | Use of these terms is not associated with bias |
| Categorical imperative: “Do X because it is right” | Hypothetical imperative: “Do X if you want Y” This perspective enables the provider to have a conversation with the patient about their reasons for not adhering to recommendations or their decision to decline a procedure. The patient may have psychosocial and economic reasons that interfere with their ability to adhere to a plan or recommendation. |
| Some forms use the language: “In spite of this understanding, I refuse to consent to the treatment.” This language is drafted from the provider’s perspective and conveys a paternalistic context. Use of this language prioritizes the provider’s opinion and recommendation over the patient’s reasoning, which could include values and trade-offs. | Recommend not using language such as “In spite of . . .” Instead, draft a declarative statement, “I decline to consent to the treatment.” |
Tools
OmniSure recommends two tools in addition to clear and comprehensive documentation of the patient declination.
Tools are designed to provide the patient with information on the possible consequences of declining treatments, procedures, or recommendations/plans. When the informed declination is explained to the patient and the patient is asked to sign the form, the patient often reconsiders and may decide to consent.
Additionally, a nonadherent patient or a patient who declines treatment, procedures, or recommendations may subsequently develop an illness or disease, or their condition may worsen, and the patient may sue the provider for a missed or delayed diagnosis. Providers can use the two tools below along with clear and comprehensive documentation of the patient declination to provide defense support.
Documentation recommendations:
- If the patient is nonadherent or declines recommended care, discuss and document the patient’s reasoning. Explore alternatives, and document the patient’s response.
- If the patient states that their declination is due to a lack of understanding, incorporate audiovisuals or multimedia and document.
- Documentation of the declination should include the following:
- The patient has declined the recommended care
- The patient’s reasons for declination
- That the consequences of declination have been explained in plain language, and the patient understands the risks of the declination
- The patient’s signature obtained on the informed declination form
- If the patient is uncooperative, the signature of a witness should be obtained and documented in the medical record
[1] Social Determinants of Health are the conditions in which people are born, grow, live, work, and age as well as related factors such as socioeconomic status, education, neighborhood and physical environment, employment, social support networks, access to health care, and the ability to improve and sustain health and reduce health disparities.
[2] The medical-legal partnership model integrates legal care and medical care to effectively and sustainably reduce chronic stressors and their associated negative health impact among low-income populations. In this model, medical and legal providers work together as a team to help low-income individuals get the legal assistance they need for a wide range of social stressors. These teams have the ability to transform practices, policies, and systems. Attorneys advocate on behalf of patients to help them address legal concerns ranging from housing, to health insurance to immigration. Having these legal concerns met can dramatically reduce chronic stress and improve health outcomes in low-income populations. (From: Medical-Legal Partnerships as a Strategy to Improve Social Causes of Stress and Disease)
