By Melinda Young

EXECUTIVE SUMMARY

Case managers are learning more about how to include patients in their care transitions, as part of shared decision-making.

  • While older Americans tend to rely on physicians to make their decisions, younger patients may treat their healthcare as something for which they perform their own research and come to their own conclusions.
  • The first step in shared decision-making is to assess the patient’s situation, followed by educating the patient about all facets of their self-care and health management.
  • Teaching patients about their medications and addressing their social determinants of health are part of the shared decision-making process.

Case managers are learning to fully include patients in medical care transition decisions, which can be challenging.

“Typically, people have allowed the healthcare provider to make decisions for them; it’s the attitude of ‘Oh, the doctor knows and it’s up to him to decide what I need,’” says Cheryl Acres, RN, CCM, CDP, owner of Comprehensive Care Management, LLC, in Dallas.

But as the healthcare industry is shifting to patient-centered and value-based care, the traditional ways of making decisions are giving way to shared decision-making. “There are generational differences,” Acres says. “You have to figure out how savvy they are.”

For example, some elderly patients know how to use technology. “I have a woman who is 93 who uses a computer for emailing,” she adds.

Younger people often are more likely to take control over their medical decision-making and to perform their own research online. “We have consumerism now,” Acres says. “People are much more savvy, thinking, ‘Maybe I don’t want to have surgery and I can wait.’”

Shared decision-making includes patients gathering information from any and all sources, including literature, the internet, friends, neighbors, social media, and healthcare providers. Patients want to make an informed choice in their care, she adds.

For example, a patient may experience chronic pain from arthritis in the knee. The physician might recommend surgery, injections, physical therapy, or pain medication. The doctor might believe surgery is the best solution, but that may not be the direction the patient wants to go. “You have to share information across multiple specialties, and the patient has to make the decision,” Acres notes.

Sometimes, it will be the patient’s guardian or a person with medical power of attorney who will make decisions, so case managers should know how to handle those situations as well. (See brief on shared decision-making with guardians in this issue.)

Acres offers these best practices on using shared decision-making:

Assess the patient’s situation. “It starts with assessment,” Acres says. “Figure out what’s going on, and whether they have concerns.”

It also is important to educate patients about all facets of their self-care and health management before engaging in shared decision-making. For instance, there might be fall risks at home the patient never considered, such as rugs. “If they don’t know that it’s a problem, they can’t fix it,” she says.

Another obstacle is faulty information. When patients say they have heard a treatment or action would be beneficial, it is important to find out where they heard this.

“You have to keep questioning and interviewing them to find out who told them what,” Acres says. “Where did they find that out? What are their sources of information that they’re considering, and how does this factor into the decisions they have to make?”

Follow best practices. “As a professional case manager, many of the guiding principles from the CMSA [Case Management Society of America] standards of practice [SOP] are key in the process of shared decision-making,” Acres says.

Those standards include:

  • facilitating the patient’s self-determination and self-management;
  • using a comprehensive, holistic, and compassionate approach to care delivery;
  • practicing cultural and linguistic sensitivity;
  • implementing evidence-based care guidelines;
  • facilitating awareness and connections with community support;
  • fostering safe and manageable navigation through the healthcare system. (More information is available at: https://cmsa.org/sop/.)

Teach patients about medications. Patients hold many misunderstandings about the medication they are prescribed. For shared decision-making to work, they should understand what providers mean when discussing their prescriptions.

Acres created an educational sheet for patients, titled, “Medication — It can be a real pill ... Or not!” The idea was to review the basics and issues with medication, such as inhalers, sprays, nebulizers, under-the-tongue tablets, swallowed, creams, lotions, patches, injections, or infusions.

“It’s designed for the lay person,” Acres adds.

Her medication sheet includes information explained in simple terms, including:

  • side effects, including reaction with other medications, and how using multiple pharmacies can lead to an omission of information about interaction issues;
  • keeping track of dosage changes or when similar medication is substituted;
  • feeling better does not mean it is time to stop taking the medication;
  • talking to pharmacist or physician about issues.

Address social determinants of health. Case managers should drill down into why patients say they make certain decisions that appear to run counter to their health and best interests. For instance, if a patient says he or she does not want to take a certain medication, the case manager should find out why.

“Keep probing until you get down to an answer of, ‘I can’t afford it’ or ‘I heard this about it,’” Acres explains. “If it’s a money issue, then see whether there are funding resources available.”

Or, there may be another medication that is generic or similar and more cost-effective the patient may be willing to take if the doctor agrees it is suitable. “You don’t have to go with their first decision,” she says. “You have to explore everything.”

Open-ended questions and statements, such as “Tell me what you’re thinking,” can uncover underlying issues and improve shared decision-making.

Case managers should repeat what the patient says and ask if the patient understood it correctly. “People are not always good at expressing things, so you have to keep dancing around the topic until you get them to open up more,” Acres suggests. “Show them that your role is to help them with whatever situation they have.”

Translate what is happening. “My job as a case manager is to be a translator,” Acres says. “We tell people, ‘This is what it means. This is what a skilled nursing facility is.’ People just don’t know.”

Patients and their families often do not understand how their insurance works, what will be covered, and when it will be covered. Case managers could ask patients if they are interested in how their insurance works. If they are not, then they can move on.

“It’s all about advocacy and educating consumers on how to ask the best questions and how to get answers,” she explains. “If you don’t ask the right questions, you don’t get good answers.”

Case managers also translate what the patient’s medication is for, and how the patient should watch for signs and symptoms of his or her disease. They also can teach patients how to talk with their physicians — particularly after they first received a diagnosis. (See Acres’ tips on talking with doctors in this issue.)

“Someone said to me one time, ‘When the doctor said cancer, I went deaf,’” Acres recalls. “When you get shocking news, your brain stops working.”

Patients need time to absorb information and to gain the courage to ask questions. They cannot make decisions if they do not understand or hear what is said to them.

Acknowledge patients’ rights to make even bad decisions. “All of us, as our own decision-makers, have the right to make bad decisions,” Acres says. “If the doctors say we really need to have some X-rays done to see what that lump is, and the person says, ‘Nope, not going to do it,’ they have the right to refuse care.”

Case managers can acknowledge the patient’s words and feelings. “All you can do is say, ‘I hear you. Why don’t we take a break and maybe come back and talk about this later? You have had a lot of information presented to you,’” Acres suggests.

With a little time to think about their decision, patients may ask new questions or want to talk about it with their families. “The case manager can say, ‘I’m OK with your saying no, but I want you to talk about it with your family, do some research, and see if you have more questions,’” she says.

If patients are open to further discussion, case managers can hold discussions to discover what is really bothering patients about the proposed next step. Maybe there is a wedding the patient wants to attend, and he or she could not make it to the wedding while undergoing treatment or surgery.

“Put yourself in the other person’s shoes and see from their perspective what they’re really thinking,” Acres says. “It could be misinformation that is so fearful for them they can’t do this, so give them time, and don’t put them on the defensive.”