Palliative Care — More Than Just Hospice, with Karla Weng and Pat Justis

Organizations and resources mentioned in this episode:

• Weng, K., et al. (2022.) Developing successful palliative care teams in rural communities: A facilitated process, Journal of Palliative Medicine, 25(5), 734-741.
• Stratis Health Rural Community-based Palliative Care Resource Center
• Washington Rural Palliative Care Initiative
• North Dakota Rural Community-Based Palliative Care

Transcript

Andrew Nelson: Welcome to Exploring Rural Health, a podcast from the Rural Health Information Hub. My name is Andrew Nelson. In this podcast, we'll be talking with a variety of experts about providing rural healthcare, problems they've encountered, and ways in which those problems can be solved. This is an episode about palliative care in rural America. I'm joined today by Pat Justis, Director of the Washington State Office of Rural Health, and Karla Weng, Senior Program Manager for Stratis Health. Thank you both for joining us today.

Pat Justis: Thank you.

Andrew Nelson: Now, Karla, last year you worked on an article that was published in the Journal of Palliative Medicine called “Developing Successful Palliative Care Teams in Rural Communities: A Facilitated Process.” First off, can you tell us what palliative care is and how it benefits patients?

Karla Weng: So palliative care is specialized medical care and support for people with serious illness and their caregivers. It really focuses on a goal of improving quality of life for both the patient and their family or caregiving support. Really focuses in on relieving symptoms, pain, and stress, and can be appropriate at any age and any stage alongside curative care. So hospice is a type of palliative care, but hospice is really defined by the Medicare benefit that it has the end of life component with you while you're no longer receiving curative care as part of that hospice program. So at least say hospice is palliative care, but palliative care is more than hospice. So the programs that Pat and I have been focusing on are sort of that outside of hospice focus.

Andrew Nelson: Sure. What are some other groups of people that might benefit from palliative care besides people who would be in hospice?

Karla Weng: So really anyone with an advanced or serious illness or sort of multiple chronic illnesses. So oftentimes some of the triggers for palliative care might be a hospitalization or many hospitalizations. It might be a provider recognizing that they have patients that just need more than kind of the traditional care that they're providing. They need that additional support because a lot of times there are also connections out into sort of community resources.

Pat Justis: Could I just add on to that a bit?

Karla Weng: Absolutely.

Pat Justis: I think they are patients that take more time. I mean, they need more in depth conversation about what their goals are so that the care is really focused on what the patient wants maybe than what traditionally physicians or providers saw as the goal. So it is a different paradigm in terms of thinking about the direction of care, and recognizing patients who really need those more in depth conversations is one way that like primary care, for example, gets more sophisticated about making those referrals.

Andrew Nelson: Can you go into a little greater detail about some of the components and goals of palliative care service?

Karla Weng: Sure. So we oftentimes talk about sort of some of the pillars of palliative care and they include things like, again, really focusing in on goals of care conversations with patients. So we're not really talking your traditional acute care. You have an illness, we're going to cure it. It's much more a longer term vision and partnership. So information and support that really help make decisions on that care plan using the patient goals and values. There's often a focus really on pain and symptom management, psychosocial and spiritual support both for the family and the patient. And then a lot of work around care plan continuity.

Pat Justis: Karla, I'm thinking that these patients are sort of a canary in a coal mine for the fragmentation in the healthcare system in that they are patients who don't do well with people not talking to each other. And you can see that that results in sort of unnecessary but necessary emergency department visits because the patient and family end up confused about what's going on and very uncomfortable from symptoms. So it shows us what we need to do better for all patients as well as those with serious illness.

Andrew Nelson: Can you tell us about the rural community based palliative care project that you undertook?

Karla Weng: Sure. So Stratis Health has done a variety of initiatives focused on trying to build capacity for palliative care in rural communities actually for more than a decade now. Our first project started in 2008. So our most recent iteration, we had the privilege to work with some foundation funding and we took a model that we had been using here in Minnesota, Stratis Health is based in Minnesota, and were able to work with the State Offices of Rural Health in Washington. So Pat was one of our key partners, but also in North Dakota and Wisconsin with the State Office of Rural Health as partners.

Karla Weng: And we've really focused in on a community capacity-based approach to helping rural communities develop palliative care services. So rather than us coming in and saying here's what a palliative care program should look like, here's what your nurses should do and here's what your social workers should do and you need this many FTE in this location, it's much more organic than that. It really focuses in on community resources, identifying who has capacity and passion and interest in your community. And then how do you connect those dots in a coherent plan.

Andrew Nelson: In the article I mentioned earlier, you mentioned how hospital based palliative care services can help to reduce hospital costs. How does the structure of palliative care need to change when it's community based and how can that be helpful to a rural population?

Karla Weng: Yeah. So when palliative care really kind of grew out of a hospital base, it was really more largely provided in urban tertiary centers when it started. So back when we started this work, like I said, in 2008, that really was what was palliative care was really based in inpatient settings and was really more of a specialty service. That model doesn't really work in rural communities. They don't have the inpatient volume and they don't have specialists. So there is a lot of opportunity to really have more community centric or community focused care that adds in that layer of palliative care support.

Karla Weng: So the programs that we've worked with have really focused more on that community side. It gets further upstream a lot of times. It really depends on the community and their resources where those services are provided. It might be telephonic. It might be clinic visits. It might be home visits. It might be in the nursing home. It might be inpatient if they have a need for it in inpatient. It really depends on kind of how they're able to structure it, but it really isn't as reliant on that inpatient hospital care as kind of the basis of delivery.

Karla Weng: But the whole reimbursement piece is actually one of the real challenges in rural communities being able to structure this because if I'm in a large urban center and I have palliative care program and I'm doing a really good job of goals of care and I have more people spending less time in the ICU or doing less aggressive treatments if that aligns with their care, that's where you find your cost savings. It's a very different environment in rural hospitals. So trying to line that up and have that structures work from a financial standpoint, unless you're under a value based purchasing contract, that doesn't always connect the dots.

Pat Justis: When we boiled it down, what we wanted to say were that we want people to be able to stay with the people they love and the places they love at a time when they most need that support. So we're trying to help that rural team build the skills to be comfortable and largely about communication. They usually are fairly adept at symptom management was just a little consultation from the outside. But when they get the communication skills training, they start to grow in confidence, because nobody wants to watch someone else suffer, right?

Pat Justis: And so when a care team in a rural community sees that someone's suffering and the provider may have an inclination to say, “We don't have it here. I need to send them elsewhere.” And that's the cycle we really want to interrupt both by educating providers and the clinical teams, but also the community about there's another way. You don't have to give up on care just because your aggressive treatment options are slowing down.

Pat Justis: The one other point I wanted to hit on that Karla mentioned is that specialty palliative care we've been bringing in through telehealth case consults, which are partially just direct clinical assistance with a difficult case, but they're also tremendous teaching opportunities for the local teams to participate with people who do have a specialty in palliative care. We envisioned that they would still want to do direct clinical telemedicine with a specialty team from far off. As it turns out, they really wanted to do telemedicine with the people they're serving in their own service area because we've got some really large counties and catchment areas.

Karla Weng: I think that's one of the really critical opportunities with trying to build palliative care services in rural programs. Yeah.

Andrew Nelson: I suppose in general, rural patients, there's going to be a much greater risk for isolation to be something they have to contend with. So it's interesting to hear how that was one of the concerns that you addressed as you were kind of getting this figured out.

Karla Weng: Yeah. And absolutely. Some of the programs, and I think COVID certainly changed some of this, but pre COVID, some of the programs that we had worked with actually were drawing on a pool of volunteers to provide like friendly visits. Sometimes it really is, if you think about kind of that goals of care and really the holistic picture, it might not be the actual medical prescriptions and assessments that's needed. It might be the friendly phone call and the check in or the meals or some of those other community types of services and supports. And so that's really something that I think rural can shine at because they're really good at building those partnerships and developing those opportunities. So we're looking at this really holistically. You know what, they might need the clinical consult, but really they might need the chaplain to stop by or a volunteer to stop by once a week and play cards with them and that makes a huge difference in sort of their overall outlook.

Pat Justis: Yeah. I mean, these are people who are trying to live with illness. And so that's a much bigger canvas than just the treatment. There's all kinds of things. There's a rural program in Florence, Oregon, that they have volunteers that are doing animal care for folks. So they're walking dogs and clipping toenails and taking dogs and cats to the vet if they need it. Tremendous relief for people who are really ill and worried about one of their best sources of comfort and not being able to do that care. So I think there's a lot of non-medical support opportunities that rural can flourish at.

Andrew Nelson: Yeah. Well, you mentioned about pet care. It's really interesting that that would indeed be an aspect of palliative cares. It's not strictly just directly caring for the person themselves, but helping them on a broader scale.

Pat Justis: Right.

Karla Weng: Maybe reduce their stress. Yeah.

Andrew Nelson: Yeah. That's really interesting. Obviously COVID changed a lot of things for everybody. Do you want to speak a little bit to how that changed administration of palliative care specifically?

Pat Justis: Well, we had telemedicine pilots started and they stopped planning and really got moving as most of the country did, but we were doing that ahead of COVID. The other thing I think I saw, and Karla may see this differently, but I saw the conversations about how do you talk with someone about serious illness just explode, and under really dire circumstances where people are talking to family members on a tablet or really difficult times for the care team who craved being somehow having the skills to be able to talk to people about these really difficult decisions and sort of the paths that they could take while living with COVID.

Karla Weng: Yeah, I absolutely agree. Yeah. I think certainly some of the in-person types of volunteer supports have drawn back for some teams. In rural, you wear 18 hats oftentimes. So as folks were trying to get their palliative care teams up off the ground or keep them operational if they're continually drawn into other types of service, I think we certainly saw sort of some pause or step back from where they were going with their program. But at the same time, heightened recognition of the need and the importance. How do we do this and how do we do it well in all sorts of situations?

Andrew Nelson: Yeah. And what you mentioned, Pat, about talking to people about severe illness, I suppose the pandemic just kind of pushed up the timeline a lot faster than people expected. Normally when we're talking about severe illness with people, it can be more comfortable to talk about it in sort of abstract terms or this is one possible thing that might happen. But people are being confronted with that reality every day, if not themselves, people that they know and so forth, so that really kind of escalates that timeline.

Pat Justis: Some primary care physicians in particular it seems feel like they already know how to do this, but there's actually a skill level that's more nuanced. They may be able to have some level of conversation, but there's really some specific ways of being and specific ways of talking that take it to another level. To have the level of conversation that really benefits the patient and family is not a 12-minute visit.

Andrew Nelson: Yeah. Karla, earlier you mentioned North Dakota, Washington, and Wisconsin. Did you find any differences in what strategies were most effective in those different states?

Karla Weng: Yeah. Good question. So I would say I'm not sure that the strategies are really different. We've also done a lot of this work in Minnesota. So I would say we can actually kind of have a four state comparison. But one of the things that I think is really important that was not really an aha for us but I think that the multi-state project really highlighted it is that there's such a... You need to really understand what resources are already available in the state and in those communities. And there's some pretty wide variation. So I would say both in Washington and North Dakota, there wasn't a lot of palliative care expertise outside of the more urban areas, which Washington's got some big. North Dakota doesn't even really have any big, but still your palliative care resources were in places like Fargo and Bismarck.

Karla Weng: And well, in Wisconsin, it actually there was much more, I would say, regional expertise embedded in some of the regional health systems. So you were really starting from a different place in terms of access to sort of the clinical skills and the understanding of palliative care. So how do you tap into the services that are already there, the types of resources that might be available to you? So one of the quotes that we use a lot when we talk about this work is from Arthur Ashe, the tennis player, and it's start where you are, use what you have, do what you can. And I think that really just sort of fits our whole approach to this. You have to know where you're starting. And if your starting line is different, how that's going to move forward is different.

Andrew Nelson: Can you describe for us the process of taking an urban palliative care plan and the changes that are required to adapt it to a rural environment?

Karla Weng: A lot of the urban programs really grew out of a tertiary hospital base. So that's where your expertise lives, that's where most of your palliative care consults happen is while somebody's in like a long term stay in the hospital. Whereas in rural communities, this needs to be oftentimes one of many things that your team works on. You don't have the volume to have somebody who just does palliative care, and you can kind of line that up and make sure you have those trained skills. You just end up having your teams in rural areas having a much broader scope of what their clinical care is.

Andrew Nelson: Sure. The pool of providers that you're drawing from in a rural environment can be a lot smaller, right?

Karla Weng: Absolutely. Providers, social workers, nurses, the whole thing.

Pat Justis: Well, and in fact, one of my I think observations about rural is that that interdisciplinary team may involve several different organizations.

Karla Weng: Absolutely.

Pat Justis: And so we have one team. And it's actually sort of a high volume for rural. They carry about 60 patients. So it really is a service that is recognized by the leader of that little health system as we need to do this. But their pharmacist is a retail pharmacist who does med packs for them and does home-based medication reconciliation, and he just owns the pharmacy in town. And likewise, their chaplains come from community churches. They have to kind of attend. Not all of those folks are suited for this particular role, but by working with those who are most interested.

Pat Justis: I mean, I think that leads me to the idea that I think rural relies more on champions and passionate champions. And so when there's a disruption to that champion, the program can falter for a while. We had a chief nursing officer leave in one community and it absolutely brought things to a halt because she was an enthusiastic supporter and the next person hired in her position said we're not going there. So I think rural swings on workforce more widely than urban, and it really needs people who care about this to really get the traction. And that includes leadership.

Andrew Nelson: What are some other organizations that you've found to be key partners in rural communities?

Pat Justis: Definitely home health and hospice. We made sure in every community that that was a very early contact for folks. Sometimes those agencies are quite far away and frankly are not serving that community well, but they're still, that's kind of their book of business. And so we wanted to form that partnership really clearly. EMS is another. I think one of the places where we're going to encourage people as they develop to move is the emergency department where folks with poorly managed symptoms turn up, and to be able to screen people there. And EMS can be very much involved in identifying people that they see a lot and helping to know how to assess their suitability and refer to palliative care.

Karla Weng: Yeah. I mean, I think assisted living if it's around is also a good option. I think whoever the appropriate community partners are in your community, and that starts to vary quite a bit if there's a senior center, if there's meals on wheels, if there's parish nursing. Those types of resources that aren't necessarily consistent in every community. If there's a pool of folks that are trying to make life better. So how do you tap into and connect to those resources? I think clergy can be really, really important. Oftentimes small rural facilities don't have their own chaplaincy services. So having that connection to local clergy can be really critical. But then there's other, we had one community that was doing a lot of work with our extension agents as a way as sort of outreach and education. So really kind of depends on the resources that are there, but definitely looking beyond the walls or the kind of healthcare system and into those community connections and community services.

Pat Justis: One of our most robust examples, they actually received a grant from the local area agency on aging. That cluster of aging social supports and home care, that bundle is really critical. And there's a dire shortage of enough home care aids to be able to help people with just tasks of daily living. So we as a nation have to really look at how we can increase the pay for those roles and also create a pipeline. I was thinking about the difference between an inpatient tertiary program where it's hospitalists that don't really know the patient beyond their hospital stay, versus working with a primary care provider who's known that person for two decades, right?

Pat Justis: So there's a real difference in sort of the quality of the way the palliative care needs to hook up to the primary care provider for that individual with a great deal of respect for that continuity of relationship. And that can make it... I mean, almost without fail, there are exceptions. Palliative care is consultative, meaning it doesn't take over. It works with the patient and family, but it also suggests possible interventions to the primary physician. That needs to be a really, I don't want to say careful, but respectfully negotiated relationship between how the service works and that long-term relationship that the person may or usually in many cases has, not all.

Andrew Nelson: Yeah. Some medical issues tend to affect rural populations more than urban populations like chronic conditions, for example. How can rural palliative care assist people with chronic conditions, and are there any other health conditions that especially benefit from palliative care availability in a rural environment?

Pat Justis: I think there's a really interesting edge between chronic care management and palliative care. And we've had lots of discussions about that. So for example, somebody may have hypertension and diabetes, and chronic care management would have them really attending to try to meet some of the guidelines for those conditions. In palliative care, it really depends on what the patient and family want and primarily the patient. So you may not aggressively go after meeting say the American Diabetes Association guidelines as much as you go after managing some symptoms.

Pat Justis: I've gone off your question just a bit, but I think there's a really important difference there in that continuum. And out of that chronic care management pool of patients often, you're going to be seeing who could benefit from palliative care because there's definite overlap. But palliative care is more intensive and it needs to be a carefully used resource.

Pat Justis: My experiences in the rural communities, once the team start using a standardized screening tool, which is something that we got everybody to work on early on, we took a national form and adapted a little bit, then they began to uncover how large the need was and it was much larger than their capacity. And that was sad at first. I mean, I now predict for new communities that they're going to feel that. They're going to begin to see with new eyes and they're going to understand how great the need is. And then they have to further finesse their use of the standardized screening tool to say who's it most important to offer this service to?

Karla Weng: Yeah, no, I think that whole difference between chronic care management and palliative care and kind of that intersection is really important. I'm glad you highlighted that. I do think one of the chronic conditions that we see a lot in rural areas that has some really good potential, and I know there's some exploration happening with a group out East is really looking at COPD and the opportunities for palliative care to be really an aspect of that. So I think cancer treatment is sort of your traditional. If you want to be a certified cancer center, one of the things you have to have available is palliative care. So not a lot of our small rural hospitals are certified cancer centers, but that is certainly one of the areas that you see some of those services grow out of. Pretty much any chronic illness when you are getting to the point where it's really limiting your life abilities and capacities.

Pat Justis: Yeah. And congestive heart failure as well. And the interesting, I think, is dementia. And with our screening tool, we define it as not early dementia or even middle stage, but later stages. And that's true of a number of conditions where you may want the person to understand what palliative care is and maybe have an initial greeting of that team, but they're not going to use them other than very intermittently until their symptoms start to really get in the way of their life and that's where palliative care begins to shine.

Karla Weng: Yeah. There's opportunities to sort of scale services, yeah.

Pat Justis: Yeah. But we often uncover that both people in a marriage are actually failing, like being able to get in and work with that patient and then discovering that their spouse is fairly debilitated as well. And so that becomes a complex situation.

Karla Weng: Yeah. I think there's a lot of the holistic nature where you're focusing on both the patient and sort of their caregiver and environment is a real advantage a lot of times. And there's actually some work that's kind of highlighting that for those that are in sort of that heavy caregiving role, it's actually kind of considered as another like social determinant of health that it can kind of impact their health. So then you end up really trying to treat them more as a family unit.

Andrew Nelson: Yeah. It's important to kind of look at their care as part of a bigger picture, not just looking at strictly quantifiable things like their blood pressure or this or that.

Pat Justis: Exactly.

Andrew Nelson: Can you talk a little bit about how rural palliative care is financed in the United States?

Karla Weng: Financing is a challenge. So we actually put together, about five years ago now we did a bunch of round tables. My thought going in was that we were going to end up with a blueprint for financing rural palliative care programs. We realized pretty quickly that that was a little ambitious. I think we scaled our language back to call it sustainability strategies because there really isn't a clear here's how you get reimbursed for your palliative care services. So it's really a mix. There are things that you can bill for. If you're in a fee for service environment, you can bill for provider visits, advanced care nurse visits. You can bill for advanced care planning, care management, some of those types of things.

Karla Weng: If you have a hospice program, oftentimes by providing palliative care and a kind of goal based and focused assessments that happen in a palliative care program help people transition into hospice services more appropriate at an earlier stage. So instead of maybe a hospice length of stay of three days, which unfortunately is somewhat common, you end up with a hospice stay of three months. Hospice is an amazing service. So helping people get into hospice more appropriately, if there's even hospice in your community, because that's a whole nother own issue is another sort of not really true finance option but another way to sort of think about where does the funds come to actually support the teams.

Karla Weng: We see a lot of teams actually rely somewhat on grant dollars and/or philanthropy, whether or not that be kind of local foundations, whether or not that be perhaps they got a HRSA grant that helped them get the infrastructure in place. We kind of see a mix of that either from sort of like program development support from grants or sometimes ongoing consistent kind of helps offset the costs. So those are kind of two areas.

Karla Weng: And then the third area that I think is growing really more rapidly even in our rural environments is, how does this fit into value-based care? So when you're talking about a value based care contract, you're usually looking at quality metrics, but you're also looking at how are you reducing kind of the overall costs of care. So by providing palliative care services, oftentimes you are helping reduce emergency room visits and/or hospitalizations, potentially avoidable hospitalizations.

Karla Weng: Both California and Hawaii have started implementing a statewide palliative care benefit. For example, in Minnesota, we have a handful of local health plans who do have a palliative care benefit and will reimburse visits for any member of the palliative care team, not just the provider. But we've also seen that in our rural communities, it's not always worth them to jump through the hoops to get paid for the three patients that they might have for that payer. So one of my soap boxes is always that the more that we can get this to look alike across payers, the more accessible it is going to be for rural providers to be able to participate and get into those kind of reimbursement opportunities for direct reimbursement.

Pat Justis: Washington just passed what we call a budget proviso with our state legislature to form a work group to get a statewide benefit. The Washington State Hospice & Palliative Care Organization met with our healthcare authority, which is our Medicaid agency, and want to return. They began writing rules before COVID for an adult benefit and then it was derailed. There was total support in that agency to go there. What they're asking for is a value-based arrangement so that you don't have to worry about who can charge what, you can use an interdisciplinary team. Has a lot of advantages, but they were quite honest with us that their information system wasn't up to the task yet. That it was going to take a year or two to turn their system into a system that could accommodate that kind of contract.

Pat Justis: I think their contract, most of the managed care organizations in our state have that capacity, but they're not as engaged with the folks who are over 65. So it's a conundrum. But the other thing about sustainability I think is telling your story with both data and human stories. Rural lives in what I call in fear of the dreaded asterisk, meaning that they don't have largely enough numbers to have a credible data pool. So after the evaluation for us finished with the contractor for Stratis, we have a work group that's now come up with I think six or seven measures that everybody agrees to collect across our initiative so that we can aggregate those numbers and have sort of credibility with those metrics.

Pat Justis: So we are thinking all the time too about how can we capture stories? I've actually got a new idea about a way to prompt for that regularly with kind of a template of capture your stories for us, because in my experience, policymakers like data but they really like stories with that to touch their hearts as well as their heads and get them motivated to make changes.

Andrew Nelson: Yeah. Is there anything else you want to talk about that we haven't covered so far?

Pat Justis: Well, the team has to attend to their moral distress at times. I mean, so we make a real point of helping the team take care of each other in this work and also not being attached to their own agenda for the patient. If they really think somebody should go on hospice and that person has no desire and has been living in a particular way all their life that is not in their own best interest perhaps, they're not going to change that. And if they can know that in their bones and just be present for that person as they are and not attached to a particular outcome, then their prognosis for staying in the field is better.

Pat Justis: The one other thing I would add is it's amazing work. I think it brings these rural teams true joy in their work to find a way now to... They've known this population has been not adequately served and falling through the cracks, and they love that they have something to do about it. And the confidence and skills that they gain, it's really satisfying work. So it meets that quadruple aim where the wellbeing of the clinical team I think increases. And I think there's some data to show that.

Karla Weng: Yeah. Pat, that's where I was going to chime into when we were talking about kind of the financial piece. The piece that I usually talk about when I talk about kind of those different buckets is really just that underlying value. So most of the rural programs that we've worked with maybe haven't quite figured out the entire financial piece of it but they recognize that it's the right thing to do. It's the way that they want to deliver care. They see the needs in their community. They see that kind of joy in work aspect of being able to do this well. They recognize it. It supports the rest of their healthcare system if they're able to kind of help address and work with those patients who have more complex needs.

Pat Justis: Clinicians do have to turn a corner and understand that fixing things, that these people are not in a position where they need or want to be fixed. That they have to relearn, because they're trained for that, right? Find it, assess it, fix it. And so they have to interrupt that cycle and say, “Be with this person and be fully present, listen more than you talk.” And so it's really a new way of looking at their role and the value of their role.

Andrew Nelson: You've been listening to Exploring Rural Health, a podcast from RHIhub. Today, we spoke to Pat Justis, Director of the Washington State Office of Rural Health, and Karla Weng, Senior Program Manager at Stratis Health. Look in our show notes for more information about their work and visit ruralhealthinfo.org for all things pertaining to rural health. Join us next time for a discussion about adverse and positive childhood experiences here on Exploring Rural Health.