A Valentine’s Day Question: What Matters to You?
Do you love someone who is living with dementia? If you do, a powerful way to show your love is to ask a simple question: What matters to you?
The answers are not the same for everyone, and that’s why it’s important to have the conversation. The guiding principles of an Age-Friendly Health System allow the concerns and preferences of each individual to shape their care. That is the essence of person-centered care. It recognizes that each of us has our own values and priorities that can mold decisions. In fact, “what matters” has a formal definition in Age-Friendly Health: “knowing and aligning care with each older adult’s specific health outcome goals and care preferences including, but not limited to, end-of-life care, and across settings of care”.
CMS – resident rights
A ”What Matters” conversation aligns with CMS guidance outlining a resident’s right to self-determination: “The resident has a right to a dignified existence, self-determination, and communication with and access to persons and services inside and outside the facility.” CMS encourages resident participation in care planning goals.
Honoring resident rights also means that “residents have autonomy and choice, to the maximum extent possible, about how they wish to live their everyday lives and receive care, subject to the facility’s rules, as long as those rules do not violate a regulatory requirement,” explains CMS.
Personal goals and care
In the face of an illness or chronic health condition, one person’s goal may be to continue painting or playing music. Another’s may be to gather with family for a birthday or holiday. Another may want to get outside to watch birds every day or enjoy the flowers. Someone else may want to stay close to a beloved pet. Pinning down these wellsprings of joy can help make them actionable, says the “What Matters” toolkit.
How does an individual want to guide decisions related to care? “Care preferences include the healthcare activities (e.g., medications, self-management tasks, healthcare visits, testing, and procedures) that patients are willing and able (or not willing or able) to do or receive,” explains the toolkit.
A “What Matters” conversation also zeroes in on fears and concerns. It pinpoints what an individual is finding challenging today, and it anticipates needs that may come up in the future.
Principles of the Age-Friendly model encourage multiple healthcare team members to have this conversation—and document what they learn in order to guide care. The input of family members and caregiving friends can be invaluable. A best practice for health professionals starting a “What Matters” conversation is to ask: Who else would you like to include?
Through their special relationships, family caregivers play an important role. The National Imperative to Improve Nursing Home Quality honors family caregivers as “an extension of the staff”. Their research shows that recognizing family members as partners in dementia care can advance person-centered care and improve quality of life. (See the blog, Dementia Care: Families Can Improve Quality of Life, for details on their findings.)
Cognitive screening is often a recommended up-front step for a “What Matters” conversation, because awareness of cognitive health can help guide the approach to the conversation. However, it would be misguided to assume that a person who has cognitive impairment cannot participate in defining goals and preferences; they often can, and family caregivers can help.
Re-visit the conversation
What matters today may change under new circumstances. Consider how a person’s care needs change over the course of a chronic condition. Is the ability for self-care different from the time of an earlier conversation? Is the person moving to a new care setting, such as a memory care unit? Are there any new diagnoses or challenges? It can be helpful to re-visit care preferences periodically, especially when there has been a major change in health condition or a transition in the clinical plan or care setting.
GuideStar Eldercare, recognized as an Age-Friendly Health System, is inspired by the mission to enhance dignity and functionality for every skilled nursing resident. We value the conversations that matter and are here to listen to residents, families, and healthcare teams. This Valentine’s Day, let’s all show the love in our caring conversations about what matters.