The pandemic has spurred more patients and families to discuss their end-of-life wishes, prompting greater utilization of advance care planning. This trend has health care providers increasingly seeking out gaps they can fill to ensure that patients receive care concordant with their goals and wishes.

Jill Schwartz-Chevlin, M.D., senior medical officer of Landmark Health, has been taking a deeper dive into the factors that maximize the effectiveness of advance care planning.

California-based Landmark focuses on in-home care services for complex, chronic patients. The company has employed various tactics in navigating advance care planning discussions with patients and family members across the country.

Hospice News recently spoke with Schwartz-Chevlin about the need to grow access to advance care planning and how that should be done.

You recently delved into research with the benefits of incorporating palliative care and advance care planning services. Can you provide a little color on these findings and their larger implications?

Issues raised around an extensive review of looking at advanced care planning documentation and advanced care planning conversations were that there was really no association with goal-concordant care, subsequent health care utilization or with patients’ quality of life. What that raised was questions around how we are actually obtaining that advanced care planning, not so much what we’re doing. What we’re doing might be checking a box to get the advanced care planning documentation. It’s really more about the process of how, and also to whom, we are actually having these conversations with.

An interesting issue to raise to understand a little bit more detail about is, “Who are the patients that we are engaging in this conversation?” And then, “What is that conversation that we are engaging them with?” Are we actually addressing the right population of patients?

We have to identify the right population of people. That right population would be people who are suffering with complications related to their serious illness and are in their last one to two years of life, people who could really benefit from multiple, more in-depth discussions around their wishes and what matters most to them.

The critical thing that we’re looking to do with advanced care planning is to be able to identify and make sure that patients’ wishes are followed through on. Where I think that there’s a problem is when we think that it should be across the board for everybody, even if they’re not toward the end of their life or living with an advanced stage disease. Those hypotheticals become less meaningful.

How have you seen the pandemic impact advance care planning utilization and access among patients and their families?

As far as the pandemic is concerned, we have found that patients are much more willing to have these conversations, because COVID-19 brought these issues about their own mortality, about their risk of going to the hospital and not being able to have family members speak for them onsite.

Ironically, there’s some more hesitation from the providers in having these conversations, because the providers themselves bring their own perspective to it. Very often, they are nervous to bring up conversations or discuss end-of-life wishes with their patients for fear they may be create a barrier with them, or that the patient may think that the provider may be thinking in terms of giving up or those types of things

But in fact, we’ve found that the patients are welcoming of it, and they really want to engage in these conversations. It’s not so much about end of life, but it’s about being able to have their wishes followed through on, no matter what they may be — whether it’s specifically related to life-prolonging treatments or more about the quality of their life. These conversations actually become so much more meaningful then, because they uncover what is so important to the patient. It can actually draw the provider closer to the patient in a much more trusting relationship.

What are Landmark Health’s strategies for engaging in these goals-of-care discussions and documentation?

At Landmark, we have advanced care planning conversations with all of our patients, whether they are closer to advanced stages or they are further upstream from that. But as part of those advanced care planning conversations, there’s discussions about goals of care and what’s important and matters most to them. That’s a critical aspect of making sure that we’re not just checking a box. We are, in fact, engaging them in conversations about what’s important so that it can be tied into the care that’s provided long-term.

The other takeaway is that we also want to make sure a health care proxy is designated as part of that discussion. No matter what the stage of disease is, all of us should have a health care proxy as someone to speak for us, should we be unable to speak for ourselves. And to have that proxy understand that they should be reflecting the patient’s wishes and not their own. That’s at a minimum. We are working avidly to be able to make sure that all of our patients can have at least that documentation.

What we’re instituting at Landmark is primary palliative care, in which we are involved with advanced care planning discussions of what matters most to patients, and being able to make sure that we set aside time to understand our patients and meet our patients where they are to truly understand what their patient journey has been like. We can then help to understand what they’re looking forward to — and help to design a care plan that is in line with their wishes.

The more that we can do that as primary providers in the community to patients with serious illness and for those that are receiving home-based care or even clinic-based care, then we’ll have fewer unforeseen complications, reduced unnecessary hospitalizations, and we can also help to reduce deaths in the hospital.

We can also reduce hospice transitions in the last seven days of life, which very often can potentially make a crisis worse during that period of time. The more we can have these conversations further upstream, the more we can avoid these very difficult situations that patients unfortunately end up in because we as providers haven’t worked on harder further upstream.

What are areas in advance care planning and palliative care that represent the most room for growth for hospice providers? How can hospices improve the reach and scope of these services?

The largest room for growth is with community providers. Everyone’s involved, but no one’s really comfortable in this space. There’s tremendous room for growth for primary palliative care.

For hospice providers, most of the work has generally been done before the patient actually agrees to sign on to hospice. Where hospice providers are very helpful is having joint visits, or coming in and doing informational visits with patients to explain the services and to explain how very often these services are in line with a patient’s wishes.

The term “hospice” can turn the patient or family away, and so by having those informational visits these discussions can be more geared around what the patient’s wishes truly are and the services that can accommodate the needs of the patient at that time.

What are some of the pitfalls that health care providers may encounter as they pursue an advance care planning program?

Sometimes providers may go into these discussions with where they want the direction of the conversation to go and a decision that they want the patients to arrive at. That is a potential pitfall. We need to arrive at the place where the patient takes us, and then be able to have a discussion from that point of view without coming in with preconceived notions of where we want to take that patient. Just engaging in the conversation and taking the patient’s pace and following their lead is going to be critically important.

Another pitfall is that very often this is a one-and-done conversation, but that’s not the case. More times than not, it’s like planting seeds and laying some groundwork. We may not feel like we’ve accomplished much in that first conversation, but we’re just opening up the door and we’re asking permission to have this conversation. We may have to have this conversation three, four or five different times. We may need to also involve other members of that patient’s care team as an integral part of this process.

What should the process for advance care planning look like?

Using some framework is always very helpful for providers looking to engage in this conversation. At Landmark, we use a serious illness conversation guide. There are many out there, and this is just one.

We need to truly be present, listen, make sure that we’re engaging with the patient and understanding all of the different aspects of what’s important to them. What are their fears and concerns? And then understanding their journey of what has transpired over time. [It’s] helping them to be able to see how care can be provided around those goals and wishes and talking openly with them, engaging them in shared decision-making throughout that process.

Set aside time to be able to have these conversations and set aside a process so that your organization can follow through with being able to measure and identify whether certain processes have been completed as part of this advanced care planning discussion. This allows you to be able to follow outcomes and to be able to understand where this discussion leads. Whatever the metrics that you’re looking for in your market, whether it’s fewer emergency room visits, fewer hospitalizations, or greater patient satisfaction scores.

We’ve noticed at Landmark that the advanced care planning documentation has been associated with a reduction in deaths in the hospital for those patients. Our program is also relatively new, so we continue to look forward to seeing what that is going to show over even more time. Over the past year, we have seen that there has been an association with reduced hospitalization deaths in hospitals.

How do providers ensure the documents are accessible when needed?

The key for advanced care planning documentation is the [primary care provider (PCP)] as a link. What Landmark is trying to do is help to facilitate acquisition of these documents so that we can make sure that the PCPs have all of them.

Ultimately, it would be wonderful if there was some kind of national database to be able to acquire these advanced care planning documents so that anyone can access it from anywhere, because the key is that they should be accessible by any medical personnel or family member who needs them.

Often the documents don’t transfer and they’re not available. We just need to make them as readily available as possible. But right now, the PCP who holds the keys.