What does the resident have the right to refuse? A guide to informed refusal in long-term care facilities

According to the federal Nursing Home Reform Act, residents in long-term care facilities have guaranteed rights to promote and protect their individual dignity and self-determination. A core component of this is knowing what does the resident have the right to refuse, which includes various medical interventions, personal routines, and social activities. Understanding these rights is crucial for maintaining autonomy and ensuring quality of care.

Quick Summary

Residents in long-term care settings can refuse a wide range of medical treatments, medications, and chemical or physical restraints. This right also extends to refusing specific staff-assigned tasks, unwanted visitors, and participation in experimental research. The facility must provide comprehensive information about the consequences of refusal to ensure the decision is informed.

Key Points

• Right to Refuse Medical Treatment: Competent residents can refuse any medical treatment or procedure, including medication and surgery, after being fully informed of the potential risks and benefits.

• Refusal of Restraints: Residents have the right to be free from chemical and physical restraints used for discipline or staff convenience.

• Autonomy over Daily Life: Residents can refuse specific activities, determine their own daily schedules, and decline to perform work for the facility.

• Informed Refusal Process: The facility must inform the resident of their options and document the refusal. It must still provide other necessary care to maintain the resident's well-being.

• Incapacity and Advance Directives: If a resident lacks the capacity to make decisions, their right to refuse is exercised by a legal representative or through an advance directive, such as a living will.

• Imminent Danger Exception: Refusal can be overridden in rare circumstances, such as a medical emergency presenting an imminent threat of serious injury or death, or if the refusal endangers others.

• Right to Refuse Visitors: Residents can refuse specific visitors, and this right must be respected by the facility.

The right to refuse care is a fundamental component of patient autonomy, legally protected for residents of nursing homes and other long-term care facilities. This right is not absolute and comes with important responsibilities for both the resident and the facility. Understanding the specifics of what does the resident have the right to refuse is essential for advocating for oneself or a loved one. The guiding principle is informed refusal, meaning the resident must be mentally competent to understand the potential risks and benefits of their decisions.

Refusal of medical and clinical care

For a competent adult, refusing medical care is a deeply rooted legal right, even if the refusal may lead to serious illness or death. In a long-term care setting, this includes:

• Refusing medication and treatment: Residents can decline specific medications, therapies, or medical procedures. For example, a resident with diabetes can refuse a dose of insulin, provided they are informed of the potential consequences, such as a dangerous increase in blood sugar.
• Refusing chemical and physical restraints: Facilities are prohibited from using restraints for discipline or staff convenience. A resident has the right to refuse both psychotropic medication used for chemical restraint and physical devices like bed rails, unless deemed medically necessary and with their consent.
• Discontinuing treatment: A resident has the right to stop receiving a treatment that has already started. For a resident receiving end-of-life care, this includes refusing life-sustaining treatments.
• Refusing to participate in experimental research: No resident can be enrolled in experimental research without their full, informed consent.

If a resident refuses a recommended treatment, the facility must document the refusal and the conversation, including the explained risks. While the facility cannot force treatment, it must still provide other forms of care to maintain the resident's highest possible well-being.

Refusal of daily schedules and personal activities

Beyond clinical care, residents have broad rights to self-determination over their daily lives. These include the right to refuse:

• Specific activities and schedules: Residents can choose their daily routine, including when they wake up, go to bed, and participate in social or religious activities.
• Performance of services for the facility: Residents cannot be forced to perform services or work for the facility. If they choose to work, it must be consensual and documented in their care plan.
• Unwanted visitors: Residents have the right to refuse visitation from any person at any time.

What happens when a resident refuses? The facility's responsibility

When a resident refuses care, facilities must follow specific procedures to ensure the refusal is informed and to protect the resident. The process involves education, documentation, and care plan adjustment.

The informed refusal process

1. Educate the resident: The facility must explain the proposed treatment, its potential benefits and risks, and the possible consequences of refusal in a way the resident can understand.
2. Document the conversation: All aspects of the refusal and the educational conversation must be documented in the resident's medical record.
3. Offer alternatives: The facility should offer alternative treatments or care options where possible.
4. Involve a representative (if applicable): If the resident has a legal representative or a health care proxy, they must be involved in the discussion.

Comparison of rights between a competent and incapacitated resident

Feature	Competent Resident	Incapacitated Resident
Core Right	Full autonomy to refuse any medical treatment.	Rights exercised by a legally appointed representative via an advance directive.
Treatment Override	Not permissible to override an informed refusal, even if it leads to poor outcomes.	May be overridden in an imminent, life-threatening emergency (e.g., threat of death within 24 hours) or if specified in an advance directive.
Decision-Making	Based on the resident's own values and reasoning, with an understanding of risks and benefits.	Based on the resident's prior wishes or best interests, as determined by their legal representative.
Emergency Exception	Standard right to refuse applies; must have capacity to understand consequences.	In a medical emergency, treatment can be provided if there is no documented refusal via an advance directive.
Facility Action	Educate, document, and respect the decision. Continue to provide other necessary care.	Consult with the legal representative and follow the directives. Seek court intervention for unresolved disputes.

Limitations to the right of refusal

While a powerful right, refusal is not without limits. Exceptions generally fall into two categories:

• Imminent danger to self or others: A resident cannot refuse treatment if their refusal poses an imminent threat to their own safety or the safety of other residents or staff. This might apply to a resident with an infectious disease who refuses treatment, or whose refusal of certain medication leads to them becoming violent.
• Lack of decision-making capacity: If a resident is deemed legally incapacitated, they cannot provide informed refusal. In this situation, decisions are made by an appointed legal guardian or a designated health care agent, often outlined in an advance directive. However, even incapacitated patients still have their rights protected and cannot be subjected to forced treatment except in very limited circumstances.

Conclusion

The right of a resident to refuse treatment, medication, and various other aspects of facility life is a cornerstone of patient rights and personal dignity. Federal laws, such as the Nursing Home Reform Act, ensure that residents maintain a high degree of autonomy, provided they have the capacity to make informed decisions. Facilities must follow a clear process of informing, documenting, and respecting the resident's choice. While certain limitations exist, particularly in cases of imminent danger or incapacity, the resident's wishes—or those expressed in an advance directive—must be prioritized. Residents and their families should be aware of these protections and use resources like the Long-Term Care Ombudsman to resolve any issues regarding refusal of care.

Frequently Asked Questions

Can a nursing home evict a resident for refusing treatment?

A nursing home cannot lawfully evict a resident based solely on their refusal of medical treatment. Eviction is only permitted under specific conditions, such as if the refusal results in a condition that exceeds the facility's ability to provide adequate care, or if it endangers other residents.

Do advance directives like a living will affect a resident's right to refuse?

Yes, advance directives, such as a living will or a Durable Power of Attorney for Health Care, are legal documents that specify a resident's wishes regarding their care. These documents guide the facility and the resident's legal representative in making decisions if the resident becomes unable to communicate their preferences.

What if a resident's family disagrees with their refusal of treatment?

For a competent resident, their wishes take precedence over family disagreements. However, if the resident is deemed incapacitated, the designated legal representative, and not the family generally, makes decisions based on the resident's known wishes or best interests.

Is a resident's right to refuse absolute?

No, the right is not absolute. It can be limited if the resident is incapacitated, or if their refusal poses an imminent threat to their own life or the safety of others in the facility.

What is the facility's role when a resident refuses care?

The facility's responsibility is to provide the resident with all necessary information about the potential consequences of their refusal. They must document the refusal and continue to provide care in a manner that protects the resident's well-being as much as possible.

Can a resident refuse to see a specific doctor or visitor?

Yes, residents have the right to choose their own physician and can refuse to see specific visitors. While facilities may have policies on accommodating this, they must respect the resident's preference.

Can a facility use medication to sedate a resident against their will?

No, using medication for chemical restraint as a form of discipline or staff convenience is prohibited. Residents have the right to refuse antipsychotic medication or other unwanted medication.