Cancer patients and their families experience day-to-day challenges that often are not addressed when the patients return to the hospital. Patients with high-acuity needs require 24-hour assistance every day, and families can easily become burned out from filling this role.
“I’ve worked with folks in oncology settings, and this is where we are looking at high-speed, high-intensity care and need support for families,” says Jennifer Wenzel, PhD, RN, CCM, FAAN, associate professor in the school of nursing and school of medicine at Johns Hopkins School of Nursing, division of cancer prevention and control within the Sidney Kimmel Comprehensive Cancer Center in Baltimore. Wenzel also is principal faculty at the Center for Innovative Care in Aging, and dissemination director for Johns Hopkins Alliance to Advance Patient-Centered Cancer Care, which is part of the Merck Alliance.
Case management is a natural fit for these goals.
“Being a case manager, you have a certain perspective on things,” Wenzel says. “It pushes you to look at how things work, how they come together, and to learn what the gaps are.”
Wenzel’s experience as a case manager and discharge planner led her to understand patients’ and their families’ needs after discharge, and it helped to direct her research in this field.
One thing case managers, clinicians, and researchers might learn about cancer patients and other patients with chronic illnesses is that their caregivers often are not family members, she notes.
“I spend a lot of time talking with families, and it’s not always the nuclear family that is working with patients,” Wenzel explains. “In a lot of communities, it might be someone outside the family who is engaged in the care, and in low-resource communities it might be a pastor or friend or co-worker who is helping the person through the day-to-day realities of their diseases.”
Her experience as a case manager and nurse influenced Wenzel’s clinical research into the daily challenges high-acuity patients face.
For instance, high-acuity cancer patients require considerable care, but they still are sent home and into the community. This is what Wenzel wanted to study: How did they cope with the daily medical care needs?
“We did focus groups, data collection, and we realized we were seeing a lot more care needs and requirements for support outside our care facilities,” Wenzel says.
Also, these cancer patients were living longer than in previous decades. Their disease increasingly was becoming a chronic illness. “Like HIV, cancer is a disease that initially was fatal, and people didn’t live long after diagnoses,” she says. “But thanks to improving treatment, we have folks living much longer, and the majority of their care does not take place within an institution.”
This is why it makes sense to combine case or care management with community health workers and nurse navigators.
“Here in Baltimore, people have been doing work in hypertension and cardiovascular care, using lay health workers or community health workers [CHWs] to work with low-resource, high-need communities,” Wenzel says. “We asked, ‘How can we use this growing population of health workers in the context of cancer treatment?’ And that’s how we started our intervention: using health workers to provide navigation.”
CHWs and nurse navigators work together. Nurses can answer questions and serve as liaisons between formal healthcare and the community.
“Also, community health workers answer nurses’ questions,” she says. “They provide information and relay questions from patients. They are a channel for more communication, helping nurses and providers understand the day-to-day needs of patients and their care partners.”
During data collecting, Wenzel asked cancer survivors in the clinic what financial concerns they had.
“We understand cancer is a high-cost diagnosis, and there are a lot of out-of-pocket costs as we move from in-care to outpatient to home,” she says.
“It shifts a lot of the costs to patients and the family, and it shifts not just tangible costs in terms of coinsurance or deductibles, but also a lot of the costs relating to time and effort,” she adds.
Wenzel learned that cancer patients were not discussing the financial challenges with nurses, even when they saw nurses regularly. There often were experience/cultural barriers. But with CHWs, patients were more open about their financial issues.
“Because they are from the community, they have a better understanding,” she says.
Working together, CHWs and nurse navigators can find patients local resources for transportation, respite care, and other things they might need but cannot afford.
One project involving CHWs, nurse navigators, and cancer patients was designed to work with clinical trial enrollment of minority patients.
“One group I’m engaged with is enhancing minority participation in clinical trials,” Wenzel says. “So navigators talk with patients about the importance of participating in clinical trials and what barriers might exist.”
Only 3-5% of patients eligible for cancer research actually do participate, and some groups are particularly unlikely to participate, she says.
“These are the people we need to understand the most, and our community health workers and our navigators help patients and families with the decision of whether to participate in a study,” Wenzel adds. “It’s important for patients to speak with someone who is not providing direct care and who is not running the research study they want to consider.”
Community health workers help patients and their family or decision-makers better understand what their participation in research means. They help patients with the decision-making process and provide support for anything they decide.
“Our community health workers are great at working with patients and families,” Wenzel says. “They’re looking for more tools to use to be helpful to patients and families, so we take these decision-making tools and allow community health workers to deliver these to patients, providing navigation for clinical trials.”
Another decision-making example involves cancer patients presented with the choice of starting treatment to increase their survival or treatment to manage their symptoms, she says.
In one pilot study, patients had to choose whether to start a treatment that would make their quality of life worse but improve their survival/longevity. The other option was to not take that treatment but to receive palliative treatment that would improve their quality of life.
“Or there could be a third decision to stop treatment altogether,” Wenzel says.
“Choosing between improved survival vs. quality of life is difficult,” she adds. “So community health workers delivered decision interventions that were part educational and partly supportive and also included real-time data related to symptoms to patients and their decision partners.”
In this example, CHWs facilitated communication between patients and decision partners. Sometimes the decision partner would be available only by phone. The community health workers would ask patients to share their feelings about the choices and to talk about their values as they reviewed the estimates of their survival odds and quality of life over time.
The pilot study found that CHWs could perform this work as well as nurses. Decision partners reported that the intervention was useful, Wenzel says.
“What patients and their care partners tell us is they feel like they have more access to support, and they feel better supported in what is a very challenging time in their lives,” she adds. “We’re still analyzing particular outcomes on health data.”