Hospice utilization among some cancer patients is leveling off and slowing growth, but healthcare providers and medical educators can adopt certain strategies to move the needle.
This is according to Dr. Ileana Leyva, regional medical director for VITAS Healthcare, a subsidiary of Chemed Corp. (NYSE: CHE). Having timely goals-of-care conversations is one effective way to bring more patients onto hospice when they become eligible.
Neuro-degenerative, lung and cardiac diseases are gaining more prominence among hospice diagnoses. In 2024, senile degeneration of the brain was the most common terminal diagnosis among Medicare decedents at 9%, followed by Alzheimer’s at 6%, according to the National Alliance for Care at Home. Chronic obstructive pulmonary disease rounded out the top three at 4.2%.
Lung cancer was the 11th most common diagnosis that year, at 2.1%, the highest rate for any form of cancer.
Hospice News spoke with Leyva about the barriers that prevent cancer patients from accessing hospice sooner and what stakeholders can do to drive improvement.
What unique characteristics do cancer patients have that may mean they’re less likely to use hospice?
From a general perspective, it’s likely more related to the increasing number of therapeutic interventions, treatments that exist today for cancer that did not exist years ago. One of the biggest impacting ones is probably immunotherapy. And then I think all of the opportunities to participate in clinical trials causes a lot of delays in appropriately transitioning oncology patients to hospice.
What I mean by this is that many of these treatments are not curative, and nor will they have curative intent, but they do delay potentially the progression of the disease. With regards to clinical trials, what happens not infrequently is that patients and families don’t fully comprehend the intent behind a clinical trial.
For example, there’s three phases: phase one, two and three. Phase three may impact the patient. Phase one is more likely looking at side effects related to the proposed medication. But when you talk to someone who is that vulnerable and you say that there’s a clinical trial that may offer x, y or z, they tend to go for it. So, we see the referrals to hospice, or even for a palliative consult, very late in the trajectory of oncology patients.
This is for two-fold reasons; patients want to maintain, quote unquote, hope for a cure or for disease-free survival. I think that our oncologist colleagues’ job is to try to help them attain that.
In addition, it’s a very hard conversation to have with another human being to say that we don’t have further interventions that are going to mitigate the eventual outcome of this disease.
So, it’s a number of things that cause cancer patients to be referred rather late compared to other diseases, with which we see more rapid referrals, such as the neurodegenerative dementia group of patients. This is especially the case for younger cancer patients.
Are there particular types of cancer where the underutilization is particularly pronounced?
It’s not so much disease based as far as it is patient based. Younger patients who can tolerate more side effects, have more reserve to tolerate the consequences, not just of the disease, but of the treatment of the disease.
In addition, when I talk to my medical learners, the students and residents and fellows … those patients in their minds have more life to lose, and so they’re going to grip onto every opportunity for life prolongation. The younger patients are very, very hard to transition.
There are some cancers that are a higher burden for patients. Lung cancers, GI cancers, advanced gynecologic cancers come with very high symptom burdens, but I think that the difference is primarily age-related. If you have somebody who is older, has multiple comorbidities, has less tolerance of the treatment, and/or the disease itself, those patients kind of break away. At some point they can’t tolerate the treatment, and even with that, sometimes they’re not referred. It’s a tough conversation to have with another human being.
How can this issue be addressed?
I think the way we’re addressing it in medicine is for physicians to have more and more training programs. I’m 63; so I remember the days where if your patient died, the direct corollary to that was that you, as a physician, failed. Luckily, I think we’ve turned a corner on that, and there’s more involvement and mandatory curriculums for medical students to speak to palliative medicine, and, in that sector, also hospice.
There are more tools to help physicians learn how to communicate effectively with regards to goals-of-care conversations. That term, “goals-of-care conversations,” now gets tossed around a lot, and sometimes it gets mixed in with what’s their code status, what’s their advance directives. But really the goals of care are what’s most important to you, given what you understand is happening with your disease.
You have to start with: “Help me understand your disease, what you’ve been told or what you’ve taken away from the disease.” Honestly, it’s a hard concept for patients and families, and at any one time that you have that conversation, they may hear only 25% of the information.
So, those are conversations that are never one and done, they have to be repeated over time. At each juncture that there’s a change, whether they didn’t respond to an intervention or there was a relapse of the cancer, we have to revisit those conversations.
Luckily, now it’s getting embedded into the medical education curriculum, so that medical students are learning to have these conversations. There’s messaging to say that if the patient succumbs to their disease, it doesn’t mean you failed. It means a disease was not treatable.
Is it fair to say that utilization is falling among cancer patients?
I think it’s more that it’s flattened out. I think there’s two reasons for that.
One is that we have many, many interventions, be that chemotherapy, immunotherapy and so forth, that have improved over time, which is a great thing. But many times it creates more chronicity of cancer than necessarily cure of cancer.
The second part is that the hospice Medicare benefit, as written by CMS, is still fairly, in my estimation, outdated, given the patient population we now deal with. A benefit that was initially described in the 1980s is dealing with patients who, in the 80s, wouldn’t have been alive because of the interventions we do have that may not be curative in nature, but may certainly palliate a symptom, help them feel better.
At VITAS, I think we succeed fairly well in a bigger view of how an intervention or a medication helps a patient, despite it not curing the patient. But the [Medicare hospice] benefit is still an outdated benefit in my estimation, as far as what is considered curative versus not curative.
You’ll see patients being told that, for example, they can’t have a certain antibiotic, or they can’t have a certain procedure, because it’s outside of the hospice, quote unquote, philosophy of care.
That’s one of my roles. Those cases come to me to review, to consider whether this is going to help the patient feel better. Is it palliating the symptom? If so, then we usually do it, and approve it, but many hospices who don’t have the resources can’t do that. So, the Medicare benefit needs to be updated for the patient population that we deal with in 2026.
Could better scaling palliative care make a difference here?
Absolutely, and that’s been the plan for us for years. So scaling is great.
I’ll give you an example. I practiced in Chicago for many years, and there are probably four tertiary centers where we had palliative medicine programs, and we couldn’t keep up with everything. So, we convened and applied for a grant, and we started what was called the Coleman Foundation, and the theory behind that is exactly scaling it so you don’t need tertiary high-level expert palliative care for every patient, but every patient should have access to primary palliative care.
It was a train-the-trainer situation where we trained non-palliative specialists who were front line clinicians to have primary goals-of-care conversations, to learn how to do primary pain and symptom management, and then to know how to escalate that to a tertiary consult if necessary.
Now what we’re trying to accomplish with the med students is to say every physician should be able to have a primary, 101, goals-of-care conversation, because there’s not enough palliative medical specialists to be able to provide all of the palliative medical needs or meet all the needs that exist. It’s impossible. There’s under 500 being produced per year from a physician perspective, and we have a silver tsunami coming with the older population.
We have more chronicity of terminally ill patients that are chronically terminally ill patients, and so we have to get our colleagues that are primary care and every other specialty to be able to do a primary goals-of-care conversation and basic symptom management and know how to refer in a timely fashion, so that’s where our efforts are right now.
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