By Jeanie Davis

Long-term support services should provide “person-centered care,” according to a 2014 rule from CMS.

In everyday patient care, this translates into a focus on learning a patient’s wants and needs, which helps the case manager align treatment with the patient’s desires, explains Susan Fegen, LVN, manager of person-centered programs and complex care management at Centene Corporation. She is a certified mentor-trainer for The Learning Community for Person Centered Practices (TLCPCP). Her mission is to integrate the nuances of person-centered care into hospital-based programs that emphasize patient-centered care.

Fegen sits on the National Quality Forum Committee for Person-Centered Planning, which is working to define the concept in terms of person-centered thinking, planning, and practices. The committee has designed a set of core competencies and recommendations to support person-centered practices across the nation.

Their draft of a CMS rule change for the definition of Person Centered Planning was released for public comment on Nov. 1, and the final changes will be available in June 2020.

The purpose, says Fegen, is to give people dignity to manage their own lives and to establish measures to improve person-centered healthcare. “Patients are people who should be allowed to make their own decisions and have their rights respected, including their right to take risks in healthcare, so they have control over their own lives,” she explains. “In hospitals, patients are too often told what to do, with little consideration given to their own wishes. Healthcare providers are focused on helping people achieve better outcomes for health and safety, but that’s not always the patient’s focus.”

She offers an example. “If I learned I had cancer, and was told I needed chemotherapy, I would tell you ‘No.’ Would you bother to ask why, or would you just write ‘noncompliant’? We often take it as adverse behavior without taking time to listen, understand, and support the patient to maintain their dignity and how they want their life to be,” she explains. “I want you to understand I have choice over my body, and I am not unreasonable, but I would like to research all forms of treatment before I make a decision.”

A treatment plan should not be developed without a conversation with the patient, says Fegen. “We need the patient’s input.”

To ensure true success in treatment for any patient, providers need to understand that the patient must want the treatment. “It must fit in their lives and support their priorities,” she explains.

A nurse learns to develop a care plan that focuses on health and safety goals for the patient. “But what about the things they value in their lives? We’ve rarely addressed those components, and yet that’s what drives a person to make decisions that affect adherence,” says Fegen. “We have to learn more about the patient’s priorities to help them make the right decisions for their health.”

For example, a patient with diabetes who is noncompliant in blood sugar management. “This person may have already had limbs amputated, so why are they not managing their blood sugar?” asks Fegen. “Often, it’s because other things take priority. It might be very simple; they might be taking care of a grandchild, and provide meals for that child, but that leaves them with insufficient funds for medications,” she adds. The patient may ration his or her medications, because it is more important to them to support their family.

“We have to identify factors that are important to each person, and we have to start asking why,” says Fegen. “That’s how we can create a holistic care plan that supports their health, and ultimately supports what they want in their life. With that question, you show you understand what’s important to the person, so you can then tailor their goals and interventions to reach those outcomes.”

This approach empowers people to take control of their lives again, says Fegen. “Most of this falls into ‘informed decision-making,’ where I understand all my choices, outcomes, and possible consequences of the choices I make.”

She advocates starting this process at patient admission. “We should create a description of who the patient is, what they like, and their preferences,” she explains. “In all our interactions, we should respect who they are, respond to them the way they choose.”

When additional information is gathered during the patient’s hospitalization, this should make discharge planning more efficient, she adds. “We will know their support systems, whether they have family, friends, and know the community resources they will need,” Fegen explains. “We can arrange for paid resources, if applicable, so their discharge is more successful with less risk of readmission.”

She adds, “If a person goes home with a plan they want, they are more likely to work toward their goals and self-manage their care.”

When getting to know patients, Fegen advises using the basic concept of person-centered thinking as a starting point:

What is important to the patient?

• Relationships;

• The way they want to live;

• Activities they enjoy;

• Things they want;

• Status and/or control over their lives.

What is important for the patient?

• Physical and mental health;

• Safe living environment, well-being, protection from abuse, neglect, or exploitation;

• A sense of purpose;

• Being valued for contributions to community.

If there is a balance between “important to/for”:

• Is the patient’s support focused only on health and safety?

• Is it heavily based on their wants, with no regard to health/safety?

Other important issues:

• What the patient wants to learn/what they need to learn;

• What the patient needs to stay the same in their life;

• What the patient needs to change.

Fegen also is assisting with a study of person-centered practices, in collaboration with TLCPCP. “Person-centered thinking has been around since the 1970s, originally starting with clinical behavioral health. Over the years, it has morphed into a concept that works for humans, and is being adapted to healthcare,” she says. “Studies of the concept have been difficult because it’s very subjective, but we want to capture outcomes.”

“Typically, in healthcare, we focus on what is right or good for the patient, but we can easily lose sight of the person at the center of that care plan,” says Vivian Campagna, MSN, RN-BC, CCM, chief industry relations officer for the Commission for Case Manager Certification. “As healthcare providers, we absolutely need to consider what are the person’s values, wants, desires, and goals because without understanding those, we can’t put a plan in place to achieve them. It’s important to remember that their goals may not coincide with ours, but that doesn’t mean that they’re wrong.”

When providers impose goals on patients, they are not likely to achieve them, she adds. “Before we start treatment, it behooves us to consider, and respect, the person at the center of everything we do. We’ll be better providers because there will be better adherence to the plan that the person has helped us design.”