Person-centered care and resident choice: Giving elders a voice

[Editor’s note: This article is part of work sponsored by the Hulda B and Maurice L Rothschild Foundation. The Rothschild Person-Centered Care Planning Task Force steering committee included Jennifer Brush, Margaret Calkins, Robert Mayer, and Karen Schoeneman.]

One perception often interfering with the adoption and implementation of person-centered care practices in nursing homes is apprehension by staff, administrators, and governing boards about potential legal liability and regulatory exposure if residents suffer injuries.  This is primarily because a number of person-centered practices, such as offering residents meaningful choices and honoring their decisions, represent significant deviations from prior accepted more paternalistic institution-centered practice. 

Person-centered care comes from a fundamentally different perspective, which puts considerable value on an individual’s right to make decisions concerning every aspect of her or his life. People are not required to follow their healthcare provider’s advice, and this right does not change just because care is being delivered in a care community instead of at home.  Often providers and clinicians want to honor resident choice, but are afraid to do so. The key is finding the balance between providing quality care and keeping clients safe, and allowing choices that may involve risk but will enhance quality of life—both of which are requirements of Medicare- and Medicaid-certified nursing homes.

So how does the care community accommodate resident preferences when the action/activity/behavior is seen as having some potential risk for a negative outcome?

A process for care planning for resident choice

The Rothschild Person-Centered Care Planning Task Force, sponsored by the Hulda B and Maurice L Rothschild Foundation, worked for a year to create A Proposed Process for Care Planning for Resident Choice (Calkins, Schoeneman, Brush, & Mayer, 2014).  This process is specifically aimed at care planning when the choice carries sufficient risk that the community is considering not honoring the resident’s wishes.  Following the Rothschild Person-Centered Care Planning process below will help the community work with the resident (and sometimes the family or representative) to understand and respect choices to the greatest extent possible, in line with Centers for Medicare & Medicaid Services (CMS) regulations.   

1. Identify and clarify the resident’s choice

Interview and observe the resident. Review the resident’s history to obtain detailed information about the nature and extent of the choice that the resident wishes to make. Repeat back to the resident your understanding of what she or he desires to choose or refuse, to confirm both parties understand each other. While the decision defaults to the individual, it can be helpful to discuss it with the representative (if one is appointed) in order to better understand some of the context for this individual preference, particularly if the resident is unable to offer a satisfactory explanation.

2. Discuss the choice and options with the resident

Discuss with/educate the resident about the potential outcomes of respecting and aiding the resident in the pursuit of her or his choices, as well as the potential outcomes of preventing the person from acting on his or her choices. Consider potential positive outcomes as well as potential negative consequences. Staff should explain that the resident still has the (regulatory) right to make choices and to refuse treatment. After learning of and considering the potential consequences, the resident may decide not to take his or her initial requested action, to curtail its frequency, or to select an alternative with fewer potential adverse consequences, or may continue to desire the original choice. The team should offer ways in which they can accommodate the choice and also mitigate potential negative consequences as much as possible.

3. Determine how to honor the choice

While some resident requests are potentially too harmful to other people to honor (“I want to drive a car again”), many other requests can and should be honored by virtue of the team creating a plan to mitigate known potential negative consequences or offering a similar activity which has fewer potential adverse consequences (for example, riding in a car to a desired location, but allowing someone else to drive). The team should compare the resident’s choice to the resident’s condition to deter­mine the nature of potential risks. If the resident’s requested action poses significant danger to others, the team should clearly explain to the resident why they cannot honor that particular choice.

4. Care planning the choice

While it is important that all members of the interdisciplinary team be involved in care planning, it is recognized that not every representative can always participate in a face-to-face meeting. It is very important to have the participation and input of the direct care staff as they have the most contact with the resident. Therefore, alternative means of communication should be made available for providing input and review of the plan. On occasion it may be a resident’s or representative’s choice to meet with a smaller group of people rather than the entire team, and that preference should be accommodated.

5. Monitoring and making revisions to the plan

The interdisciplinary team will monitor the progress of the plan and its effects on the resident’s well-being and ongoing desire to continue with the choice. The team will work with the resident to revise the plan as needed and desired by the resident. A person’s needs and preferences change over time, and so will a person's expressions of them. Care plans and staff should be flexible, as people have the right to change their minds.

6. Quality Assurance and Performance Improvement (QAPI)

The QAPI team should review trends related to resident choice and safety, particularly when residents are routinely denied requests, or when the QAPI team identifies patterns of community care practices that might be improved by performance improvement action plans.

For so long, the focus in long-term care has been on doing what is “in the best interest of the person” as defined by the healthcare professional staff, rather than as defined by the person. The whole process has been based on a historical medical model that assumes the “patient” is the passive and “compliant” recipient of care directed and provided by professionals.  In contrast, this care planning process has been developed to help give the person a voice in directing his or her own care.  Rather than viewing a person as non-compliant if he or she does not agree with your recommendations, the authors suggest viewing the resident as a member of the care team, participating in the discussion options and potential risks and outcomes. In cases where a resident expresses a choice that is considered risky, use the described care planning process to discuss the potential outcomes of both respecting and aiding the resident in the pursuit of her or his choices, and review the potential outcomes of preventing the resident from acting on his or her choices. This will demonstrate to residents, state surveyors, family members, and others that a care community has done due diligence with the resident and his or her representative.

The full Process for Care Planning for Resident Choice, which includes blank forms and case studies can be found at www.IdeasInstitute.com and www.BrushDeveloment.com

Jennifer Brush, MA, CCC/SLP, is Director at Brush Development Company, Chardon, Ohio. She can be reached at Jennifer@brushdevelopment.com.

Margaret Calkins, PhD, is President of IDEAS Consulting, Kirtland, Ohio, and Chair of the IDEAS Institute. She can be reached at mcalkins@ideasconsultinginc.com.