EXECUTIVE SUMMARY

Patients with multiple chronic illnesses often are frail and could benefit from case management that includes addressing end-of-life care.

  • Case managers should ask patients about their stories to learn more about whom they are and their generational culture.
  • It’s important to know what patients understand and don’t understand about their illnesses.
  • Nurturing a relationship with patients can include simple things like asking about their dogs or cats.

Case managers who work with older adults likely have observed that the more frail and complicated their medical issues become, the more vulnerable they become. One disease might be a challenge, but multiple health problems can be a medical tsunami.

“Some of the people we take care of have 12 to 15 chronic conditions,” notes Linda Keilman, DNP, GNP-BC, an assistant professor and gerontological nurse practitioner at Michigan State University’s College of Nursing in East Lansing.

“The way I explain it to young college students is that looking at older adults, especially in geriatrics and gerontology, is a 1,000-piece puzzle that needs to be put together,” Keilman says. “There are no straight edges and no picture to look at to try to determine where to start, so you have to approach the individual piece by piece, step by step.”

These steps often lead to an end-of-life discussion. Keilman offers the following suggestions for how to approach the topic with frail, older patients:

Know the person’s story. “When we know someone’s story, we try to think of whom they were when they were a younger, more vibrant person with hopes and dreams of the future,” Keilman says. “What did they encounter, where do they live, and who were they?”

The story is very important to provide historical perspective to the person’s life and background.

“It gives us insight into who the person is in relation to a cohort of individuals,” she says. “This is what is missing in healthcare because we don’t really have time, like a reporter, to get the story, to get the facts.”

Knowing the patient’s story is to take a strength-based approach to patient care, Keilman says.

“When we think of individuals ages 85 and older, these are the individuals who fought in World War II, and the women left at home worked in factories,” she explains. “They had a whole different way of life, living through the Great Depression.”

For the baby boomer generation that is just turning 70 and heading into their elderly years, their experiences include the Vietnam War, a time of free sex and love, sit-ins, and civil rights marches, as well as Roe v. Wade, she says.

“Older people are closer to death than birth, but they still have a good journey where they are,” Keilman says. “My goal is to have that person be comfortable and pain-free and symptom-free.”

Learn how a patient understands his/her disease. “Part of what a case manager can do is to provide education and re-education,” Keilman says. “I call it intentional listening where you listen to the patient and family, trying to pick up red flags or emotions.”

A strategy for doing this is to say, “I heard you say,” or “Let me just talk to you about dementia and how those medications your loved one is on work,” she suggests.

“Approach it in segments and allow the person to think about it for a while,” she adds. “Then the next time you see them, you can say, ‘You know we talked about dementia and its progression and how the medications are not a cure.”

These conversations are a process and no difficult conversations can occur in one visit, Keilman notes.

“The nice thing would be able to have a conversational journey,” she says.

Nurture a therapeutic relationship with the patient. Case managers, generally, have a more therapeutic relationship with their patients. They’re a familiar voice, even if it’s only for a phone call, Keilman says.

“Patients won’t talk to their physicians as much as they’ll talk to their case managers,” she adds. “I ask them what’s on their bucket list; what are the things they want to accomplish.”

These unfinished tasks usually are small things, such as a granddaughter’s wedding or graduation, seeing a first grandchild, or waiting for a visit from a loved one or friend, Keilman says.

Sometimes healthcare providers are afraid to ask patients these questions because they think the patient might ask for a cure or have different expectations than what their medical condition would suggest. But if the patient asks about a cure, there’s nothing wrong with that, even if it’s not achievable, she says.

The key is to be comfortable with one’s own feelings about death and dying. Once a case manager has that comfort level, it’s possible to ask patients how they envision the end of their lives and what cultural issues are important to them, Keilman says.

Another way to nurture a therapeutic relationship with patients is to ask them about their loved ones, including their furry companions, she suggests.

“Make sure you’re introduced to their pets at a home visit,” she says. “Then write down in the paperwork the name of their pet and when you call the patient later, ask about their pet and how it’s doing. That makes a person happy.”

Help patients develop their legacies. Another question that case managers can ask patients is about what they want their legacy to be.

“That’s an opportunity to help people at the end of their lives to make amends,” Keilman says. “A lot of times there are old wounds where people don’t talk to one another, and this is an opportunity to bring people together.”

For instance, patients could be encouraged to talk into a tape recorder or write down some words and then, if they would like or if the person they are talking to is deceased, destroy them and let them go, she suggests.

Also, there are rituals that help people deal with life changes, and case managers can help patients find community and spiritual resources that would help them engage in a ritual.

“Case managers are fabulous at finding resources,” Keilman says. “They don’t have to be experts, but just knowing that we’re holistic human beings with cultural, spiritual, and other understandings of these dimensions is important.”