Resident’s Right to Be Informed of and Participate in Treatment

Nursing home residents have the same right to participate in the informed consent process as any other patient. 42 C.F.R. § 483.10(c) provides:

The resident has the right to be informed of, and participate in, his or her treatment, including:

(1) The right to be fully informed in language that he or she can understand of his or her total health status, including but not limited to, his or her medical condition.

(2) The right to participate in the development and implementation of his or her person-centered plan of care, including but not limited to:

(i) The right to participate in the planning process, including the right to identify individuals or roles to be included in the planning process, the right to request meetings and the right to request revisions to the person-centered plan of care.

(ii) The right to participate in establishing the expected goals and outcomes of care, the type, amount, frequency, and duration of care, and any other factors related to the effectiveness of the plan of care.

(iii) The right to be informed, in advance, of changes to the plan of care.

(iv) The right to receive the services and/or items included in the plan of care.

(v) The right to see the care plan, including the right to sign after significant changes to the plan of care.

(3) The facility shall inform the resident of the right to participate in his or her treatment and shall support the resident in this right. The planning process must –

(i) Facilitate the inclusion of the resident and/or resident representative.

(ii) Include an assessment of the resident’s strengths and needs.

(iii) Incorporate the resident’s personal and cultural preferences in developing goals of care.

(4) The right to be informed, in advance, of the care to be furnished and the type of care giver or professional that will furnish care.

(5) The right to be informed in advance, by the physician or other practitioner or professional, of the risks and benefits of proposed care, of treatment and treatment alternatives or treatment options and to choose the alternative or option he or she prefers.

(6) The right to request, refuse, and/or discontinue treatment, to participate in or refuse to participate in experimental research, and to formulate an advance directive.

(7) The right to self-administer medications if the interdisciplinary team, as defined by § 483.21(b)(2)(ii), has determined that this practice is clinically appropriate.

(8) Nothing in this paragraph should be construed as the right of the resident to receive the provision of medical treatment or medical services deemed medically unnecessary or inappropriate.

O.C.G.A. § 31-8-108(b)(2) Provides that each resident of guardian shall be entitled to participate in the overall planning of the resident’s care and treatment. The resident or guardian shall be informed of this right each time a substantial change in the treatment plan is made. Residenta may refuse treatment. O.C.G.A. § 31-8-108(b)(3). Residents are entitled to a complete and current explanation concerning the resident’s medical diagnosis, treatment, and prognosis in language the resident can understand. O.C.G.A. § 31-8-108(b)(6).

Appendix PP defines the following terms used in the regulations:

“Total health status” includes functional status, nutritional status, rehabilitation and restorative potential, ability to participate in activities, cognitive status, oral health status, psychosocial status, and sensory and physical impairments.

“Treatment” refers to medical care, nursing care, and interventions provided to maintain or restore health and well-being, improve functional level, or relieve symptoms.

The following guidance applies to Subsections (c)(1), (4) and (5):

Health information and services must be provided in ways that are easy for the resident and/or the resident’s representative to understand. This includes, but is not limited to, communicating in plain language, explaining technical and medical terminology in a way that makes sense to the resident, offering language assistance services to residents who have limited English proficiency, and providing qualified sign language interpreters or auxiliary aids if hearing is impaired. This does not mean that a facility is required to supply and pay for hearing aids.

The physician or other practitioner or professional must inform the resident or their representative in advance of treatment risks and benefits, options, and alternatives. The information should be communicated at times it would be most useful to them, such as when they are expressing concerns, raising questions, or when a change in treatment is being proposed. The resident or resident representative has the right to choose the option he or she prefers.

Discussion and documentation of the resident’s choices regarding future health care may take place during the development of the initial comprehensive assessment and care plan and periodically thereafter.

NOTE: While surveyors must only cite F552 when deficient practice is found related to applicable program requirements as reflected in the CFR, the following information may inform surveyors about important considerations in making compliance decisions. The Federal Patient Self – Determination Act contained in Public Law 101-508 is the authority on an individual’s rights and facility responsibilities related to advance directives. This includes, the right of an individual to direct his or her own medical treatment, including withholding or withdrawing life-sustaining treatment. If there are concerns with advance directives, refer to §483.10(g)(12), F578.

The intent ot Subsection (c)(2) and (3) is explained as follows:

To ensure facility staff facilitates the inclusion of the resident or resident representative in all aspects of person-centered care planning and that this planning includes the provision of services to enable the resident to live with dignity and supports the resident’s goals, choices, and
preferences including, but not limited to, goals related to the their daily routines and goals to potentially return to a community setting.

Surveyors are given the following guidance:

Residents and their representative(s) must be afforded the opportunity to participate in their care planning process and to be included in decisions and changes in care, treatment, and/or interventions. This applies both to initial decisions about care and treatment, as well as the refusal of care or treatment. Facility staff must support and encourage participation in the care planning process. This may include ensuring that residents, families, or representatives understand the comprehensive care planning process, holding care planning meetings at the time of day when a resident is functioning best, providing sufficient notice in advance of the meeting, scheduling these meetings to accommodate a resident’s representative (such as conducting the meeting in-person, via a conference call, or video conferencing), and planning enough time for information exchange and decision making.

A resident has the right to select or refuse specific treatments options before the care plan is instituted, based on the information provided as required under §483.10(c)(1), (4)-(5), F552. While Federal regulations affirm a resident’s right to participate in care planning and to refuse
treatment, the regulations do not require the facility to provide specific medical interventions or treatments requested by the resident, family, and/or resident representative that the resident’s physician deems inappropriate for the resident’s medical condition.

A resident whose ability to make decisions about care and treatment is impaired, or a resident who has been declared incompetent by a court, must, to the extent practicable, be kept informed and be consulted on personal preferences.

The resident has the right to see the care plan and sign after significant changes are made.

When evaluating compliance, surveyors are instructed to:

• Interview the resident, and/or his or her representative to determine the level of participation in care planning.
• Identify ways staff involve residents and/or their representative(s) in care planning.
• Determine if care plan meetings are scheduled to accommodate residents and/or their representative.
• Determine how facility staff addressed questions or concerns raised by a resident or his or her representative, including if they are addressed at times when it would be beneficial to the resident, such as when they are expressing concerns or raising questions.
• Determine if the resident and representative were unable to participate, did facility staff consult them in advance about care and treatment changes.
• Interview staff to determine how they inform residents or their representative of their rights and incorporate their personal preferences, choices, and goals into their care plan.
• When the resident request is something that facility staff feels would place the individual at risk (i.e., the resident chooses not to use the walker, recommended by therapy), is there a process in place to examine the risk/benefit and guide decision-making?
• Review the resident’s medical record to determine if facility staff included an assessment of the resident’s strengths and needs and whether these, as well as the resident’s personal and cultural preferences, were incorporated when developing his or her care plan.
• Determine how facility staff observes and responds to the non-verbal communication of a resident who is unable to verbalize preferences (i.e., if the resident spits out food, is this considered to be a choice and alternative meal options offered)