Know Older, Medically Complex Patients’ Wishes
Consider addressing end-of-life issues
EXECUTIVE SUMMARY
Case managers are seeing increasing numbers of older, sicker patients as the baby boomers enter the post-70 age. Challenges of caring for this population include learning how to broach the subject of end-of-life care when patients are particularly frail and ill.
- Patients with chronic illnesses can be grouped into categories of active and healthy, medically challenging, and nearing the end of life.
- Case managers should try to have conversations with physicians and patients about end-of-life issues.
- They can ask patients if they’ve thought about their feelings toward feeding tubes and respirators.
As the population of people who are age 65 or older expands, case managers continue to see increasingly older people with serious and multiple chronic illnesses. Healthcare for this population poses numerous challenges, but it also suggests an opportunity for case managers to address advance directive and end-of-life questions and needs.
Baby boomers turning 65 will continue for close to two decades, says Linda Keilman, DNP, GNP-BC, an assistant professor and gerontological nurse practitioner at Michigan State University’s College of Nursing in East Lansing.
“The U.S.’ fastest-growing population is its oldest one,” she says.
Along with the gray wave is the health industry’s increase in numbers of older Americans with multiple chronic conditions. The big question will be how to care for these patients, as there are too few young healthcare professionals interested in specializing in gerontology, Keilman says.
“How do we get more people interested?” she says. “Caring for older adults, in my opinion, is a blessing, and it started for me because I had two sets of great-grandparents and a lot of great-aunts and uncles that we saw on a regular basis.”
Keilman’s nearly three-decade interest in working with seniors grew from a love of healthy older people, but continued as she saw older relatives die.
“We had a lot of deaths in the family, and my parents taught us that this was a natural process of living,” Keilman says.
By contrast, American society exhibits an anti-aging philosophy with commercials geared toward hiding the signs of aging and a focus on the culture of youth. “In this country, nobody wants to age,” she says. (See story on end-of-life discussions in this issue.)
American culture also has issues with addressing death, as evidenced by the “death panels” speeches and protests during discussions of the Affordable Care Act.
“We are all going to die, and ‘death’ is a word that we don’t like to use in our society,” says Mary Mareck, MSW, a geriatric consultant and founder of Mareck Family & Geriatric Services in Lansing, MI. Mareck also wrote a 25-page end-of-life book, titled, Planning for End-of-Life: A Resource Guide.
“We will face chronic or life-threatening diagnoses, and we’ll have to make decisions about what are our own wishes as a person, patient,” Mareck says.
Case managers, whether they work in hospitals or community settings, are often involved when people face complicated and traumatic medical crises, she notes.
Although case managers have to be cautious with their time in order to handle their caseloads, it’s still important to take the time to understand a patient’s wishes about medical power of attorney, suggests Mareck.
“This outlines who is your advocate if something happens to you, but it may or may not list the limits on care that you would like,” she says.
Mareck has written suggested questions that nurses and case managers can go over with patients to get an idea about what they might like to happen if their medical condition worsens. (See questions for healthcare providers in this issue.)
Case managers can help patients think about what types of medical interventions they would like if they’re ever unable to speak for themselves. “Would they want to be on a ventilator?” Mareck says. “Would they want to have a feeding tube, and under what conditions?”
Multiple types of chronic illnesses can complicate care management where patients have different levels of health and medical need.
“I divide people into three different groups,” says Mark D. Ensberg, MD, an associate professor of family medicine in the division of geriatrics at Michigan State University. “One group is rigorous and relatively healthy, one is medically complex, and there’s a third group that is toward the end of life, where consideration should be given to palliative care or hospice. The middle group is the one that’s often in transition.”
For example, an elderly patient might have diabetes. Many of the diabetes guidelines were designed for vigorous and relatively healthy people who have the one chronic illness diagnosis of diabetes, he notes.
“If the patient has memory problems or frailty, or if there is depression or other issues, you can’t always follow the guidelines initially, but have to evaluate the patient and address the memory problems or frailty,” Ensberg says. “You should increase support or look at the living situation before you can fine-tune the diabetes, but if they have multiple other issues going on, they could be at the end of life.”
According to Ensberg, in assessing which of the three groups fits best for a particular patient, healthcare professionals could refer to the following five important observations:
- observations about cognition, memory, and ability to learn new things,
- physical strength and endurance, whether there are any falls or how the patient gets around their home,
- psychosocial behavioral issues such as anxiety, and whether the patient has social support and someone to rely on,
- spiritual support and whether the patient has a church that can provide support and help to the patient, and
- understanding what the patient’s home environment is like.
“You’re kind of looking for a fit between how they’re functioning in their home and the support they have,” Ensberg explains.
Looking at these categories and how they apply to patients is part of the role of case managers, and they can address advance directives as a part of this process, Ensberg says.
“It’s absolutely important to address advance directives,” he says. “Physicians are very busy, and discussions like these take a lot of time.”
Medicare now pays physicians, with two new billing codes, to provide patients with end-of-life counseling — a change that went into effect at the beginning of 2016. But Ensberg says he suspects this additional reimbursement will not necessarily lead to a large increase in physicians having these discussions with patients. Case managers who bring up advance care planning with their patients could suggest patients discuss these issues with their physicians. “It is always easier if the patient comes with questions or wants to address it,” Ensberg says.
“If there could be communication between case managers and physicians prior to these discussions, it’s tremendous,” Ensberg says.
As it’s often the physician who poses an obstacle to these discussions, Ensberg suggests that case managers work with the physician’s office nurses, who can help start communication between doctors and case managers.
When a case manager meets with a physician to discuss a case in which the patient is at the end of life, the case manager might ask the doctor how much the patient knows about his or her condition, Mareck suggests.
Case managers also might review advance care planning with patients, clarifying their decisions. For instance, a case manager could note to a patient, “You named your oldest son to be your power of attorney. Have you discussed with him your limits on care? Have you discussed how you will want to die? If you have a stroke and can no longer walk or swallow, do you know if you want to have a feeding tube?” she says.
When case managers or nurses or nurse practitioners discuss advance care planning with patients, they might want to use the SPIKES method, Ensberg says. (See SPIKES method in a nutshell in this issue.)
One way for case managers to think about addressing end-of-life issues is that they can bring these up to give their patients an opportunity to steer their own medical care.
“I think patients often don’t feel like they have a voice in the medical decision process,” Mareck says. “When a person comes in with a white coat on and says, ‘This is what I think we have to do,’ they just go along with it.”
Case managers, alternatively, have an opportunity to empower patients and to say to their doctors, “Wait a minute — I want to talk to you about this,” she says.
Having these conversations and empowering patients is particularly important for older patients with advanced diseases because the healthcare system is riddled with interventions that impair patients’ quality of life with very little benefits.
“We are seeing people in their late 80s on dialysis,” Mareck says. “It’s very difficult and does not improve the quality of life; all it is doing is postponing death, and patients are not dying on their own terms, so it’s important that the patient and their advocate have a voice.”
It’s not about assisted suicide — it’s about asking patients what they want, she adds.
“We’re saying, ‘Do you want to go on dialysis until your daughter’s wedding at Christmas?’” she says. “That’s a different issue, and you have to think about the different values you have and how you want to die and where you want to die.”
Healthcare for the older, chronically ill population poses numerous challenges, but it also suggests an opportunity for case managers to address advance directive and end-of-life questions and needs.
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