For more than a year, Dr. Carin van Zyl has operated a palliative care program for Los Angeles County residents with advanced liver disease. High-risk patients at LAC+USC Medical Center receive palliative medical management from a nurse practitioner and intensive case management from a palliative care social worker. They also participate in group sessions (typically with family members) focused on disease education, symptom management, and goals of care, where they receive help completing advance directives and identifying their treatment preferences.
Steven Birenbaum, a CHCF senior communications officer who works with the foundation’s program officers on end-of-life issues, spoke with van Zyl about this innovative approach. Their conversation has been edited and condensed for clarity.
Q: In its first year, your program provided palliative care to about 90 patients with advanced liver disease. You collected utilization data on 37 who had either died of their illness or been discharged from the clinic. You reported 50% fewer emergency room visits, 66% less time in the hospital, and 50% less time in intensive care units (ICUs). How did you achieve this?
A: Our program uses case management and group visits, neither of which is new. It’s the structure and content that is unique. We aren’t aware of anybody else combining this group visit model for disease education and advance care planning at the same time. For a long time, people have been testing group visits for disease education or for advance care planning. For advance care planning, the literature suggests that when you throw a bunch of people together who aren’t similar enough, they can’t function as peer support for each other.
For instance, a breast cancer patient doesn’t have nearly the same experience as a colon cancer or prostate cancer patient. Cancer isn’t a big enough unifier. Also, we didn’t want to run an advance care planning group for patients facing a range of life-limiting illnesses. But patients with advanced liver disease are similar enough to each other, in terms of their disease, to recognize common problems and upcoming decisions, and thereby work together.
Q: What are your patients’ lives like?
A: They tend to be poor, undocumented, and ineligible for services furnished to other poor people. They have high rates of substance use disorders, particularly alcoholism and intravenous drug use, both of which are correlated with homelessness and mental health issues. That’s how we end up with a lot of the liver disease we see.
Q: With so many different kinds of patients and circumstances, how do you determine what’s best for each individual?
A: We offer anybody who qualifies at least one group visit. Some return and bring their families so they can hear the same information. Some come a second time, not just for the community but to reinforce the teaching received. Some clients need a ton of support — our social worker will call them almost every day or even visit them at home. We try to make sure that the most intensive resources are dedicated to the people who need them the most and that we’re not smothering people with a degree of contact that may not be beneficial. We want to make sure a scarce resource goes where it needs to go.
Q: How much knowledge do your patients have about their disease?
A: After we started to get referrals from the liver specialists, we found ourselves making the same mistake they made — assuming these patients had basic knowledge. Eventually, we realized we weren’t going to move the conversation unless we gave patients basic information about what livers were for and what liver disease looks like. Our typical patient has not completed high school, and some haven’t even gone through middle school, so many don’t have any biology education under their belts.
While most understand that we have livers, they did not know where their livers are and what livers do — or that you can’t live without one. In that situation, the rest of the conversation is just going over their heads — particularly the message that the illness is fatal without a transplant. The first part of the group visit is a Liver 101 — what a liver is and the tasks it has in the body. We connect the breakdown of those functions to the symptoms they feel and why it is so serious. Then, we talk about the common medications used to treat the symptoms, and why some of the side effects that cause them to stop taking the drugs are actually desired and part of the treatment. That sets the stage for the health care decisions section, because now they know that because of their illness, these decisions will come up, and maybe soon.
Q: What have the results been like for those in the program?
A: We looked at a group of liver patients who were seen in the same liver clinic a year before our palliative care service started and who were given usual care for liver disease. We compared that group to equally sick, equally burdened patients being seen in the liver clinic and getting palliative care. We checked to see how many days they spent in a hospital, how many days in an ICU, how many times they came to an emergency room — even where they died.
Patients who had the benefit of palliative care services and case management had 50% fewer emergency room visits. They spent 66% less time in the hospital and 50% less time in the ICU. More of them completed advance directives that specified the kind of treatment they preferred, with a 50% completion rate compared to less than 5% in the overall liver disease population. We had double-digit percentages of people who died in hospice, which is where they wanted to be. In preliminary financial analysis, we found that 30 patients accounted for $86,000 in savings compared to usual care, and that’s just one-third of patients we’ve enrolled so far. The savings from just those 30 patients paid for the social worker.
Q: Are patients satisfied?
A: It’s really humbling. Patients universally say they wish everyone in the liver clinic had access to these services. They express heartfelt gratitude for the support and describe their new understanding of their terminal illness in surprising ways. These conversations are shocking and hard to hear, yet somehow the staff is communicating in a way that leaves room for hope. These patients were not crushed by understanding that they were in deep trouble. Very few dropped out after meeting us. Most that did were admitted to other hospitals and never left, or their homelessness made it difficult to find them and provide the same support. With the 90-plus patients we’ve seen, I don’t think any said, “You know, I just don’t think I need you.”
Q: Within the medical community, do liver specialists like this approach?
A: Initially, we got a lot of questions about what we were saying to patients, how we were saying it, and what the patients’ reactions were. Transplant physicians wanted to know whether we were just trying to convince everybody to stop treatment and go into hospice. These physicians are by nature aggressively optimistic and protective of their patients — they’ll go to the mat for anybody who they think has even a single-digit chance of getting a liver, because that’s the difference between saving them and letting them go.
Even though we invited them to watch our conversations with patients and to share our experiences with them, some physicians were suspicious, until they saw that our case management helped some of their patients get liver transplants. That’s when they were like, “Oh, then it must not be true that they’re busy convincing everybody not to get treatment.” The head of the liver program recently told me the docs never want this service to go away.
Q: Would this approach work well for patients with other diseases?
A: If I had my way, these principles would be applied across the system in every disease, in every clinic, every specialty. This population came with many challenges; if we could be this successful with this group, we could apply it to almost any other. This is a model for educating the entire health care system. Patients want this information. It’s possible to provide it in a way that’s hopeful, not devastating. When you do that, other things fall in line: utilization, costs, and outcomes. There’s no downside to patient-centered/whole-person principles. I would also target people dealing with other life-limiting illnesses, such as the heart disease, chronic lung disease, and neurodegenerative disease populations. In a palliative care world that focuses mostly on cancer, they are also underrepresented.
Steven Birenbaum is a senior communications officer at CHCF, where he works to promote the foundation’s efforts to improve care at two of the most critical phases of life: the beginning (maternity) and end (serious illness/end-of-life care). An experienced grantmaker, he sets strategy for the foundation’s investments to strengthen health care journalism in California.
Prior to joining CHCF, Steven was executive writer at Blue Shield of California, where he wrote speeches, presentations, op-eds, and byline articles for the CEO and senior executives, and helped produce the company’s annual report and monthly internal communications newsletter. Previously, he was a senior writer and account manager at Chandler Chicco Agency, a public relations firm, where he provided product promotion and issues management support to leading pharmaceutical companies.
His work has been published in TheNew York Times, Newsday, Stanford Social Innovation Review and KQED Radio, among many other news outlets. Steven received a bachelor’s degree in political science and history from the University of Wisconsin-Madison and a master’s of public affairs from the LBJ School of Public Affairs at the University of Texas, Austin.