By Marlene Icenhower, BSN, JD, CPHRM, and Kezia Windham, RN, BSN, CNOR, CPHRM


The concept of informed consent is founded on the ethical principle of patient autonomy. In Schloendorff v Society of New York Hospital, 211 NY 125, 105 NE 92, 93 (1914), Justice Benjamin Cardozo wrote, “Every human being of adult years and sound mind has the right to determine what shall be done with his own body; and a surgeon who performs an operation without his patient’s consent commits an assault, for which he is liable for damages.” The right to autonomy extends to both a patient’s right to make informed decisions about the medical care and treatment they will receive (positive autonomy) and to the care and treatment they do not want to receive (negative autonomy).

The patient’s right to refuse medical treatments and interventions is well defined and recognized by healthcare practitioners across the country. But does this autonomy give patients the right to demand treatment, even when said treatment is nonbeneficial or harmful? 

Physicians have a well-established right to refuse provision of certain treatments, such as requests for an unapproved drug or nonbeneficial treatment. Practitioners have an ethical obligation to respect patient rights, act in a patient’s best interests, and provide competent medical care. Fortunately, practitioners are able to fulfill these obligations in most patient encounters without conflict. 

However, what happens when patient autonomy conflicts with the practitioner’s obligation to act in the patient’s best interests? Does the principle of autonomy allow patients to demand treatment that is neither beneficial nor in their best interest? How can practitioners resolve this in a way that safeguards the patient’s right to autonomy while fulfilling their ethical obligation to the patient? Consider the following when navigating these difficult clinical situations:
  • Know the law. Some states have statutes that guide practitioners who are confronted with patient requests for medically futile or nonbeneficial treatment. It is important to understand current laws in your jurisdiction and to ensure the compliance of organizational policies and procedures. Consult an attorney for guidance when addressing unclear situations or questions. 
  • Develop policies and procedures. If your state provides statutory guidance regarding medically futile or nonbeneficial treatment, ensure that organizational policies and procedures reflect state law. If there is no such guidance, develop policies and procedures based on input from a multidisciplinary team and an attorney. Essential elements to include in policies addressing management of patient requests for nonbeneficial or medically futile treatment are:
    • Guidelines for when and when not to provide treatment. Preestablished guidelines for treatment provision or nontreatment by the facility can support practitioner decision-making and help define parameters for patients and families. For example, facilities often have clear parameters about pregnancy termination. Clear treatment parameters, established via guidelines, policies, and procedures, provide treatment constraints and help practitioners explain treatment limitations to patients and families.
    • Options for transfer. When establishing treatment constraints, ensure that organizational policies delineate options for transfer of care to other practitioners/organizations that can accommodate the patient’s wishes. 
    • Ethics committee consultation. Consultation with a multidisciplinary ethics committee can help patients and families understand the basis of care decisions and lead to consensus on care options. Accordingly, policies regarding nonbeneficial or futile treatment should clearly define situations in which to obtain ethics committee consultation. 
    • Communication and documentation expectations. When disagreements with treatment decisions arise, communication and documentation are especially important. Policies should clearly define expectations for communication and documentation. 
  • Communicate clearly. Discussions with patients and families regarding futile or nonbeneficial care can be contentious, vague, and complex. Patient-centered communication skills can encourage dialog and promote healthy discourse. Consider the following when conducting difficult conversations with patients and families about treatment decisions: 
    • Start discussions early in the course of care. Patient-centered conversations regarding treatment decisions, especially in the context of serious illness, should occur early and be structured. Eliciting the patient’s agenda is fundamental to patient-centered communication. Strive to assess the patient’s and/or family’s level of knowledge about the illness and prognosis. Early conversations can set the stage for building trust and consensus for future discussions. 
    • Keep communicating. Demonstrate empathy and share information according to patient preferences. Continue to explore the patient’s goals, values, and priorities. Patient and family engagement is a continuous process and an essential element of shared decision-making. 
    • Provide evidence-based recommendations. When indicated, make medical recommendations regarding next steps. Treatment options that conflict with the patient’s agenda can provoke contention. An environment of trust and open communication established early in the relationship, even when treatment considerations conflict with scientific evidence, may lead to patient and family reflection. 
    • Anticipate and prepare for conflict. Acknowledge that patient autonomy will occasionally conflict with practitioner beneficence and nonmaleficence obligations. Despite offering evidence-based recommendations, patient treatment decisions may conflict with professional judgment. In some cases, adjudicating these conflicts may not be worth the battle. If so, follow facility guidelines regarding treatment provision. In the event discussions with patients or their families become abusive or threatening, providers should discontinue the conversation and follow organizational policies for de-escalating or managing threatening patient or visitor behavior.
  • Document all conversations. Disagreement with treatment recommendations will occur on occasion. Thorough documentation of all care conversations is essential to chronicle the course of the patient’s illness, decision-making process, and outcomes. Consider the following when documenting conversations about treatment decisions: 
    • Provide evidence of shared decision-making throughout the episode of care. Documentation of treatment decisions is not solely about establishing preferences for future care. Documentation should reflect patient and/or family involvement in the decision-making process. Shared decision-making combined with good communication results in quality practitioner/patient interaction and collaboration. It is important to document these interactions, as it clarifies the patient’s clinical course and basis for treatment decisions throughout the patient encounter. 
    • Document the patient’s own words. When interactions are contentious, reflect the actual conversation by using quotation marks to document the patient’s words. Even if the conversation includes profanities, use of the patient’s or family’s actual words paints a clear picture of the situation. 
    • Be objective. Patient and family treatment decisions often conflict with practitioner recommendations. Despite these conflicts, document objectively and avoid interjecting opinion and conjecture. 
While treatment decisions will always require thoughtful conversation and careful consideration, weighing patient autonomy and practitioner obligations of beneficence and nonmaleficence is essential to patient-centered care and professional judgement. When patient autonomy conflicts with the practitioner’s ethical obligations, a clear understanding of legal and ethical principles in the context of well-designed policies and procedures can help resolve conflicts and guide practitioners.
 
Copyrighted. No legal or medical advice intended. This post includes general risk management guidelines. Such materials are for informational purposes only and may not reflect the most current legal or medical developments. These informational materials are not intended, and must not be taken, as legal or medical advice on any particular set of facts or circumstances.