When the Resident Says No: Best Practices for Informed Refusal

ECRI and Annals of Long-Term Care: Clinical Care and Aging (ALTC) have joined in collaboration to bring ALTC readers periodic articles on topics in risk management, quality assurance and performance improvement (QAPI), and safety for persons served throughout the aging services continuum. ECRI is an independent, nonprofit organization improving the safety, quality, and cost-effectiveness of care across all health care settings worldwide.

Every competent adult—or his or her representative—has the fundamental right to make informed decisions regarding health care, whether that means declining treatment of terminal illnesses or simply choosing not to follow doctors’ orders. They have a right to be informed of their health status, to be involved in care planning and treatment, and to request or refuse a treatment, therapy, or procedure that a health care provider has recommended. In turn, aging services organizations and clinicians have an ethical obligation to safeguard a resident’s autonomy and right to self-determination.

Although recent literature is sparse on the rates of treatment refusal, a landmark study from 1983 found that 19% of the study’s population initially refused at least one treatment or diagnostic procedure over an 8-week period, and the study authors suggested that rate underrepresents the total percentage. Psychological factors and problems in communication were identified as the primary and secondary reasons for refusal, respectively. The majority of the refusals resulted in no treatment given (34%), followed by a delayed acceptance of proposed treatment (31%).¹

Individuals may refuse medical treatment for a multitude of reasons. They may disagree with the course of action; they may fear possible outcomes or believe the risks do not outweigh possible benefits; they may have religious, cultural, familial, or financial concerns related to the proposed treatment; or their current emotional distress may affect their ability to make a decision. When providers understand the reason behind refusal, they are likely to be in a better position to help mitigate complexities and develop the best course of action. This article explores these complexities and provides best practices for providers in varying situations.

Refusal Process

Refusal of medical treatment triggers a series of discussions providers are ethically and legally obligated to hold with their residents or patients that often rely on trust and respect within the provider-patient relationship. These obligations include the following:

• Establishing decision-making capacity and legal competency;
• Negotiating to encourage compliance, if necessary or possible; and
• Planning for alternative or follow-up care and/or discharge (if the individual ultimately decides to refuse recommended treatment).

The discussions should cover possible consequences of refusal, options for alternative treatments, and invitations to return for care at any time. All the while, to safeguard themselves and the organization from liability, providers should adhere to strict documentation practices, detailing these discussions in the medical record and explaining the steps providers took to walk the individual through the refusal process.² 

Develop Policies and Procedures

Aging services organizations and clinicians should work with internal and external resources to develop informed refusal policies and procedures that comply with state law and regulatory requirements. Developing policies and procedures to respond to an individual’s refusal in a humane, ethical, and even-handed manner is a multifaceted endeavor that requires input from numerous sources, whether from internal staff members, such as the medical director, the director of nursing, frontline staff, and, if available, ethics committee members, or from external resources such as consultants, legal counsel, behavioral health professionals, and public health professionals. Each contributor brings a different perspective to managing care refusals, ensuring that policies and staff training account for special considerations and that staff can serve as resident or provider advocates to develop a smooth process.

Policies, procedures, and staff training should address the following areas:

• Strategies for effective communication that engages residents in treatment-related decisions;
• Guidelines for assessing decision-making capacity and identifying court determinations of, or raising concerns about, legal competence;
• Guidance for discussing the treatment plan, the risks and benefits of proposed interventions, expected health outcomes, and possible treatment alternatives with the individual or his or her representative;
• Documentation practices and development of related forms; and
• Safety and legal risks of noncompliance.

In addition, staff training, policies, and procedures should acknowledge exceptions to the right of refusal (eg, emergency situations, altered mental status, threat to community).

Assess and Facilitate Understanding

Assessments of decision-making capacity should be completed by a physician and can best be made through open-ended, rather than closed, questions. For example, asking “Can you tell me what will happen if you withdraw from care?” rather than “Do you understand what will happen if you withdraw from care?” encourages the individual to provide a detailed response that goes beyond a simple “yes/no” answer, and therefore may be more indicative of the person’s true understanding of the situation. Physicians should also keep in mind that a person’s capacity can be fluid. A person may not have capacity because of a medical condition or a treatment regimen, or for other reasons, but may regain capacity at a later time. Unless physicians feel that the person’s incapacity is permanent, it may be necessary to address their capacity at various decision points throughout the treatment process, especially in situations of chronic conditions and illness progression.

By the end of an assessment for capacity, physicians should be able to gauge the individual’s understanding of the following³:

• What his or her medical condition is
• The natural progression of the condition
• The nature of the proposed intervention or treatment alternatives
• The risks and potential benefits of the proposed treatment
• The consequences of refusing the treatment or
• intervention
• The viable alternatives to the proposed course of care
• The potential risks and benefits of the proposed alternative care

The individual’s answers may be predicated on how the provider communicates diagnosis and treatment information. Delivery methods must be appropriate for the individual’s language proficiency or provided in their preferred language for discussing health care. Documents regarding refusal of care should be assessed for readability and be presented in the languages appropriate for the provider’s resident population. Individuals with limited English proficiency require special attention because persons who do not understand what has been communicated about their condition and options for treatment cannot provide truly informed consent or refusal. According to the Joint Commission, health care providers and staff should use educational and informed consent materials written at a fifth-grade reading level or lower.⁴ Whenever possible, material that is written in or has been translated into the individual’s preferred language should be used, and if that language is not English, an interpreter should be present during both resident/patient education and informed refusal discussions. If the materials are not in the preferred language, the interpreter should not try to read or interpret them for the individual; in this case, information should be provided orally and documented in the medical record.⁴ 

Similarly, if a surrogate must make decisions on behalf of a resident of any age, the organization should provide any language or communication assistance that the surrogate needs. For example, if a parent asks one of their children to interpret health care information, the organization should still provide an interpreter to protect against miscommunication. Providers must then document in the medical record the fact that the individual’s refusal was discussed and note any language or communication assistance used during the discussion.⁴ 

Prepare Frontline Staff

The persons who will be confronted with the ethical and legal issues surrounding informed refusal may be frontline staff members who are not well versed in health care ethics or law. Aging services organizations should prepare frontline staff for managing informed refusal, including scenarios that involve family- or court-appointed health care proxies, representatives, surrogates, and health care powers of attorney. Frontline staff will need succinct and informative materials to assist them in their decision-making processes. Such guidance should include the following:

• How to initially respond to refusals of care
• General options for addressing the situation
• When to simply accept the refusal of care and when to take additional steps
• How to take those additional steps and when to involve administration
• When and how to involve outside entities (eg, courts, social workers)

Figure 1 presents an algorithm to help providers respond to those who refuse care.

Establish Documentation Practices

Communication and documentation practices are key aspects of ensuring that individuals make informed decisions regarding their care, while also safeguarding aging services organizations and clinicians against litigation. The following guidelines can help aging services organizations and clinicians develop standard communication and documentation practices that focus on resident education and understanding.

Documentation of refusal should include the following:

• Description of the proposed care or treatment
• The individual’s statement of refusal
• The individual’s reasons for refusal
• Statement that the associated risks, benefits, and consequences of both consenting to and refusing
• treatment were described to the individual
• Proof that educational materials were provided
• and discussions were conducted in a language that the individual can understand (or an interpreter
• was provided)
• A statement emphasizing that after these discussions, the individual understands the risks of refusing the recommended test or treatment
• All dates, times, and people present during discussions

Obtain the individual’s signature on the form or in the chart attesting that he or she understands the associated risks and has refused the care, along with the signature of other involved parties. If the individual is incapacitated, enter in the chart or on the form the signature of the surrogate decision maker and the signature of a witness to these discussions.

Conclusion

Providing and documenting informed refusal becomes critical for delivering safe and effective care and effectively mitigating litigation risk. Respecting individuals’ autonomy and cultural background and taking universal precautions for health literacy are paramount throughout the consent and refusal process and help ensure that informed decisions are made. Organizations should develop policies and procedures—in consultation with legal counsel and other internal and external resources—that address assessing decision-making capacity and legal competence; ensure compliance with federal and state laws regarding resident and patient rights; provide evidence-based educational materials in a culturally and linguistically competent manner that supports health literacy; document the entire process, including detailed descriptions of patient-provider conversations and signed refusal forms; and provide training and/or assistance in handling refusal situations. 

References

1. Appelbaum PS, Roth LH. Patients who refuse treatment in medical hospitals. JAMA. 1983;250(10):1296-1301. doi:10.1001/jama.1983.03340100030024

2. Marco CA, Brenner JM, Kraus CK, McGrath NA, Derse AR; American College of Emergency Physicians Ethics Committee. Refusal of emergency medical treatment: case studies and ethical foundations. Ann Emerg Med. 2017;70(5):696-703. doi:10.1016/j.annemergmed.2017.04.015

3. Leo RJ. Competency and the capacity to make treatment decisions: a primer for primary care physicians. Prim Care Companion J Clin Psychiatry. 1999;1(5):131-141. doi:10.4088/pcc.v01n0501

4. Joint Commission. Advancing effective communication, cultural competence, and patient- and family-centered care: a roadmap for hospitals. 2010. Accessed September 16, 2020. https://www.jointcommission.org/assets/1/6/ARoadmapforHospitalsfinalversion727.pdf 

5. Derse AR. What part of “no” don’t you understand? Patient refusal of recommended treatment in the emergency department. Mt Sinai J Med. 2005;72(4):221-227.