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In this final episode, Clemson University’s Tracy Fasolino discusses four challenges facing palliative care and hospice services and legislation that might address these issues.
Health Affairs Pathways explores the avenues and alleyways of the health care system through a variety of storytelling – from investigative journalism and health policy explainers to long-form interviews.
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00;00;00;26 - 00;00;28;06
Dr. Tracy Fasolino
Years 2020 and 2021 strained our U.S. health care system. For instance, in 2021, we lost about 3.4 million people in our country with 460,000 of those from COVID 19. And for a second year, COVID was the third leading cause of death after heart disease and cancer. We witnessed firsthand the need for high quality health care, including palliative care and hospice services.
00;00;28;21 - 00;00;48;12
Dr. Tracy Fasolino
And I was right there on those front lines talking with the patients when they were able to or on the phone with a spouse or some relative, and there wasn't enough of us. We've known about the gaps in palliative care and hospice services prior to the pandemic. It's even more evident now, and we're preparing for the next phase,
00;00;48;12 - 00;01;21;24
Dr. Tracy Fasolino
maybe that next pandemic, though I doubt we can really be prepared. All the while, we're challenged by limitations in reimbursement, no reimbursement, coupled with rising health care costs. What will the future look like for palliative care and hospice services? In this final episode of “No One Gets Out of Here Alive” we're going to tackle the four challenges laid out in episode two and take a look at legislation that may be addressing each of these issues.
00;01;22;08 - 00;01;48;17
Dr. Tracy Fasolino
You know, these palliative care and hospice models that are being created and proposed and even evolving to meet the needs of individuals with serious illnesses. This may be you right now. Or you in the future. From my work on this podcast, I have developed a greater appreciation for the connection between legislation, policy and practice. They all inform each other and they synergize their efforts to meet our needs.
00;01;49;10 - 00;02;21;06
Dr. Tracy Fasolino
As a practitioner, educator and researcher, I was pretty much lost when it came to policy. I'm not feeling lost anymore in these murky waters. It's certainly not crystal clear, and I'm not an expert. I do know that we're all challenged by multiple priorities in creating healthy communities. Palliative care, as well as hospice teams are working to reshape and redefine the business as usual model into something that we can really understand and take care of those that are struggling.
00;02;22;04 - 00;02;54;26
Dr. Tracy Fasolino
All the while, it feels like a pace that's flowing like molasses. Particularly for those who are in need. Now the four challenges laid out during the previous episode include, one, educating policymakers, health care providers and the public on their role in the benefits of palliative care, as well as hospice services. Two, expanding the hospice benefit to prevent those live discharges.
00;02;55;02 - 00;03;24;27
Dr. Tracy Fasolino
Three, creating a palliative care coverage for those with malignant and nonmalignant illnesses like way upstream at the onset of the diagnosis, and four, ensuring that patients and caregivers that are joining the palliative care services or receiving hospice are really getting high quality care. Know that these organizations are truly providing what they say they're going to. As you can see, we have a lot to unpack in this brief period, and this is not an exhaustive list.
00;03;25;09 - 00;03;50;14
Dr. Tracy Fasolino
There's a number of additional challenges. We just can't cover them all. Challenge number one, educating everyone on the role and benefit of palliative care and hospice services should probably start with changing the stigma associated with these terms. When someone says the word hospice, they do it almost in a whisper. I mean, I get it. I think they think of imminent death,
00;03;50;19 - 00;04;16;11
Dr. Tracy Fasolino
patients on the death door, time's up, they're being respectful. Most folks have immediate feelings of fear and dread, and this overwhelming sense of hopelessness when they hear the word hospice. I mean, it's hard to accept our mortality or our fate. But palliative care and hospice is about living and living well. You know, writing your own chapters and even your last chapter the way you would want it to be written.
00;04;17;01 - 00;04;42;28
Dr. Tracy Fasolino
And good news is palliative care and hospice providers are joining conversation in public spaces to help educate about these services. Yeah, like this podcast. Events such as Death Over Dinner and Death Cafes. These are public awareness campaigns that tend to focus a bit more on hospice and less on palliative care. But there's tons of stories that demonstrate that palliative care and hospice use are positive.
00;04;43;07 - 00;05;05;03
Dr. Tracy Fasolino
And many of my patients always say, you know, I wish I had met you sooner or I wish I'd had hospice sooner. It's not that we haven't talked about it. They hardly ever ask to talk about hospice. In fact, NHPCO (National Hospice and Palliative Care Organization) reports, most patients only are in hospice for about 76 days. In my experience, sometimes less than two days.
00;05;05;24 - 00;05;34;08
Dr. Tracy Fasolino
Honestly, this number should really be higher, like 180 or even higher. We're all struggling with a fragmented health care system. Enormous amounts of care are provided by families and even neighbors, as you heard from Wendy and Al. I mean, his neighbor delivered banana pudding on a regular basis, and that's a big deal in the South. In fact, there is about 53 million unpaid caregivers in the US, predominantly women.
00;05;35;00 - 00;06;12;14
Dr. Tracy Fasolino
How are we going to support these patients and their caregivers? Well, we need some more palliative care clinicians. We need to train our current primary care providers, as well as our specialists about palliative care and hospice. And we need some public campaigns that talk specifically about non hospice palliative care. And the good news is that we do have one legislative bill that is in process right now focusing on workforce development and public campaigns known as the Palliative Care, Hospice and Education and Training Act, also referred to as PCHETA, Senate Bill 4260.
00;06;13;01 - 00;06;23;08
Dr. Tracy Fasolino
And to get more information about this bill, I turn to Ginger Marshall, Chief Executive Leader of the Hospice and Palliative Care Nursing Enterprise.
00;06;24;16 - 00;06;54;00
Ginger Marshall
One of the things that we've all been working on diligently over the past, feels like, ten years, might be a little bit less than that, is PCHETA and the palliative care hospice education and workforce expansion bill and it's been around for a while. I think it was first introduced or established in 2016. And it's unfortunate because we get it to a point and then, you know, we can't seem to quite get it through the next step.
00;06;54;00 - 00;07;33;21
Ginger Marshall
And then we have to start the next year of starting all over again. And the good thing is, is even though that has not been successful, it has really done a great job of highlighting what the needs are. So there are pieces of this that we have been able to pull out and introduced in other sections of other bills, though, again, and it really concentrates on public awareness campaign and education campaign, just, training centers and what that would be comprised of and what it would look like.
00;07;34;05 - 00;08;02;23
Dr. Tracy Fasolino
So which legislators are sponsoring PCHETA this congressional year? US Senators Tammy Baldwin and Shelley Moore Capito. Now, Senator Baldwin is quoted as saying, “Having served as my grandmother's primary caregiver as she grew older, this issue is near and dear to me, and I want to make a difference for families like mine experiencing serious health concerns.” I love that support. Senator Capito said,
00;08;03;01 - 00;08;30;23
Dr. Tracy Fasolino
“Access to high quality palliative and hospice services is vital for patients and their families. As a caregiver for parents living with Alzheimer's disease, I saw firsthand just how valuable these services are. In order to preserve access to this care, our bill will strengthen training and education opportunities for individuals working in these fields. I look forward to working with Senator Baldwin and my colleagues in the Senate to pass this legislation.”
00;08;31;12 - 00;08;55;12
Dr. Tracy Fasolino
This sounds amazing, doesn't it? And as Ginger mentioned, PCHETA has been back and forth and in and out of Congress kind of searching for that policy window, that right person at the right place, at the right time. Maybe we found it. If we can't get it at the federal level, how about the state level? I have a rock star colleague that made it happen in Virginia in the early nineties.
00;08;56;03 - 00;09;19;09
Dr. Tracy Fasolino
Mr. Pat Coyne is a clinical nurse specialist, assistant professor and director of palliative care at the Medical University of South Carolina in Charleston. He led the charge for a state level bill to fund palliative care and hospice education. He shared some of his work on his nurse led policy initiatives that were successful. For example, he described how easy it was to put through two bills on pain management.
00;09;19;22 - 00;09;25;15
Dr. Tracy Fasolino
They went through without a hitch. And then he shared the story about his efforts on the palliative care education bill.
00;09;25;26 - 00;09;53;03
Pat Coyne
And it died a miserable death. Never got it out of committee. The governor said, I mean, it just died. The next year I took care of this guy, Johnny Oates, who is a baseball legend, and his wife testified he was a hero in the states. And I said the exact same thing I said the year before, same bill passed 99 to nothing and we were just like to this day
00;09;53;05 - 00;09;57;08
Pat Coyne
they still pay $600,000 a year for palliative care education.
00;09;57;11 - 00;10;04;19
Dr. Tracy Fasolino
Having a state level bill similar to PCHETA would really be great for all of our communities.
00;10;07;19 - 00;10;30;14
Dr. Tracy Fasolino
Let's take a look at what legislation might be in the works for challenge number two, expanding the hospice benefit. You may not be aware that November is a national hospice and palliative care month, and as you heard from this podcast, the goal of these services are to provide holistic, person centered, interdisciplinary support minus live discharges and poor quality.
00;10;30;14 - 00;10;43;12
Dr. Tracy Fasolino
In episode one we heard from Edo Banach, former president and CEO of the National Hospice and Palliative Care Organization. Here's what he had to say about the current Medicare benefit for hospice and palliative care.
00;10;43;19 - 00;11;03;11
Edo Banach
You know, a lot of people think that the original design of the Medicare hospice benefit, the “you have to give up curative care in order to get palliative care” and “the benefit is limited to those who have a prognosis of less than six months” was sort of bourne out of some clinical determination, some model that was put together by clinicians.
00;11;04;12 - 00;11;26;17
Edo Banach
Not true. The benefit was actually put together by the folks on the receiving end of the advocacy, mostly at the Office of Management and Budget, who said, look, we have a certain amount of money to spend and we're going to build a box. I'm building a box. And within that box we have a certain amount of money to spend and we have certain parameters, right?
00;11;26;17 - 00;11;46;03
Edo Banach
And this is the way that Medicare really thought about benefits back then. We've got to build some parameters because if we don't build parameters, this thing will careen out of control and we'll end up spending too much money. And so the six month limitation and the lack of concurrent care really came not from the people advocating for the care, but from the people who were designing the benefit within the government.
00;11;46;03 - 00;11;52;02
Edo Banach
This is not a new concept. This need to sort of update the benefit and make it more flexible.
00;11;52;19 - 00;12;19;14
Dr. Tracy Fasolino
Edo spoke about concurrent care models and what he means by this is it's a model that bridges the gap for serious, ill and dying patients. Basically, it offers a curative care alongside palliative or hospice care and makes that transition much smoother. And we’ll come back to that in a little bit. How do we fix this Medicare benefit to include both interdisciplinary palliative care teams plus hospice?
00;12;20;12 - 00;12;44;09
Edo Banach
Well, I think one way to do it is to overhaul the system itself. You know, one thing about the evolution of the hospice benefit and the creation of a community based palliative care benefit is that I actually think it's going to constrain, restrain and actually sort of train folks on providing the right set of benefits.
00;12;44;10 - 00;13;03;27
Edo Banach
And I'll give you an example. Right now, if you're a sort of capitalist palliative care provider, you can provide whatever you want. Why? Because there's no palliative care benefit. You could just use the term and you could say we're providing palliative care. That's a problem. And that's, I would argue, a really big problem. Same thing in hospice.
00;13;03;27 - 00;13;28;02
Edo Banach
If the incentives right now are to discharge a patient alive because you don't want to get audited or, you know, then that's the behavior that we're going to see. And I think that we need to update and kind of change the benefit, one, so that people can get better care, but two, so that our providers are following the right incentives.
00;13;28;17 - 00;13;35;09
Edo Banach
And in terms of incentives, I think the looming and I think bigger problem, quite honestly, is the growth of managed care.
00;13;35;23 - 00;14;10;28
Dr. Tracy Fasolino
Yep, I've seen this scenario play out in the clinical practice. You know, there are several demonstration models in the work for addressing the Medicare benefit. CMS (Centers for Medicare & Medicaid Services) continues testing Part A hospice benefit within the Medicare Advantage package using the value based insurance design model. Basically, this demonstration will assess the costs, you know, the care delivery and the quality of palliative and hospice care with these Medicare Advantage plans who are ultimately going to financially be responsible for part A and part B benefits.
00;14;10;28 - 00;14;35;25
Dr. Tracy Fasolino
Now keep in mind, having an extra layer of support and that one on one care as we approach end of life is incredibly important. That person may be struggling to breathe. So doing basic things like going to the bathroom or bathing is exhausting. So adjustments to the hospice benefit need to consider the vast amount of unpaid care rendered and what they need.
00;14;38;12 - 00;15;07;04
Dr. Tracy Fasolino
We do have an up and coming legislation titled Improving Access to Advance Care Planning Act. A US Senators Mark Warren and Susan Collins introduced this bipartisan, bicameral legislation in September to expand advance care planning, what we call “ACP”. The bill promotes four areas. One, allows social workers to provide ACP services. Two, remove some of the costs that are passed on to the patient
00;15;07;05 - 00;15;34;17
Dr. Tracy Fasolino
for ACP. Three, promotes increased education for providers on the current billing codes for ACP and for improved methods for reporting barriers that we run into. Now, this legislation was introduced in the House by Congressman Earl Blumenauer. Senator Warren explains, quote, “Decisions about care planning are some of the hardest for a family to make, but they're also some of the most important.
00;15;35;20 - 00;16;01;11
Dr. Tracy Fasolino
One of my biggest regrets was not having early conversations about care planning with my own mom, who suffered from Alzheimer's for 11 years and was unable to speak for nine of those years.” Senator Collins and Representative Blumenauer shared similar stories in support of this expansion. And my heart goes out to them because honestly, having these types of documents is truly a gift to the family and the caregiver.
00;16;02;07 - 00;16;23;25
Dr. Tracy Fasolino
Now, this legislation is supported by a number of patient and family advocacy organizations, such as the Coalition to Transform Advance Care, the National Association for Home Health and Hospice and many others. We'll just have to watch and wait to see what kind of traction this bill gets. I mentioned that we would return to the idea of concurrent care.
00;16;24;07 - 00;16;51;13
Dr. Tracy Fasolino
You know, this care delivery model that allows for enrollment in curative therapies plus hospice services, and currently our children with serious illnesses enrolled in Medicaid or the Children's Health Insurance Program in the majority of the U.S. states can receive concurrent care. I mean, this is a stellar model, though I fear that many parents and caregivers and providers aren't aware of this benefit.
00;16;56;29 - 00;17;32;25
Dr. Tracy Fasolino
We're at challenge number three, carving out coverage for palliative care, interdisciplinary teams for those patients with nonmalignant and malignant illnesses, though way up stream, like at the diagnosis. We have a proposed Senate Bill 2565, titled Expanding Access to Palliative Care Act would support palliative care models by directing the Center for Medicare and Medicaid Innovation, CMMI, to implement a community based palliative care demonstration project like similar to the hospice demonstration project we talked about in episode one.
00;17;33;20 - 00;18;06;29
Dr. Tracy Fasolino
Now, this new model can do exactly what we need right now for patients with serious illnesses. It provides that extra layer of interdisciplinary support for some of the sickest and most vulnerable Medicare beneficiaries. When I say community based palliative care, what do I mean? Now there's some debate about what this means, but for now, I'm referring to a non-hospital based care provided in community clinics, primary care practices, private homes, or either other assisted living facilities like nursing homes.
00;18;07;22 - 00;18;33;19
Dr. Tracy Fasolino
The question is, where does this benefit actually fit? With hospice? Home health care? Solo? Right now, the Center to Advanced Palliative Care reports that half of the in-home palliative care services in the US are coupled with hospices. And as Edo mentioned, there is no current palliative care benefit through Medicare or any other private insurance companies. As everyone tries to sort this out,
00;18;34;05 - 00;18;44;16
Dr. Tracy Fasolino
patients and their caregivers really aren't getting all the support they can.
00;18;47;00 - 00;19;12;03
Dr. Tracy Fasolino
So what legislative acts have been signed and are being rolled out? Now there's a couple mainly pointing toward hospice. For example, the Rural Access to Hospice Act allows rural health clinics and federally qualified health clinics to receive payment for hospice services. Basically, this means the rural primary care provider can serve as the hospice provider of record. And this is all covered under Medicare Part B.
00;19;12;08 - 00;19;35;08
Dr. Tracy Fasolino
It'll take a while for those boots on the ground folks like me to learn the details about these bills and even longer for it to assess the impact of clinical practice. What we do need is to develop actionable legislation focusing on diverse communities and equity. For example, less than half of black and Hispanic Medicare beneficiaries enrolled in hospice in 2019.
00;19;35;26 - 00;20;07;20
Dr. Tracy Fasolino
As far as palliative care services, we've seen a dramatic growth in hospital based services, but people from racial and ethnic minorities have not benefited equally. Our public hospitals are less likely to provide palliative care, with only about 60% of them reporting palliative care teams. Now, these hospitals serve around 44 million patients who are disproportionately minorities, Medicaid beneficiaries, the uninsured and those living in disadvantaged communities.
00;20;07;24 - 00;20;35;20
Dr. Tracy Fasolino
So we've got some work to do. On the home stretch now. Challenge number four, ensuring that patients and caregivers enrolling in hospice receive high quality care. The Hospice Act, which is an acronym for Helping Our Senior Populations In Comfort Environments, is designed to improve the hospice survey evaluation process. You know, the bill's going to provide training for our hospice surveyors so they know what to look for to help the hospice organizations improve care.
00;20;36;04 - 00;21;01;01
Dr. Tracy Fasolino
And it also creates a special focus facility program for hospices that are not up to par. Hospice organizations may be penalized for not reporting quality data to the Secretary of Health and Human Services. And lastly, it allows for the Secretary to use various methods to enforce compliance with hospice requirements, such as civil monetary penalties.
00;21;04;07 - 00;21;28;21
Dr. Tracy Fasolino
Well, we've covered a ton of information about where we want to go with legislation and policy for palliative care, as well as hospice services. Those four challenges, educating, expanding and building out more funding to help folks with serious illnesses - we've matched up those challenges with various bills that are in the queue. Can seem a little bit overwhelming. As we close up this podcast,
00;21;28;22 - 00;22;00;08
Dr. Tracy Fasolino
Let's circle back again to hear from our amazing experts throughout the course of this podcast. Mr. Edo Banach’s call to action for reforming our care system. Dr. Betty Ferrell's Directive for Policymakers. Dr. Wayne Hollinger’s thoughts on the Economics of Hospice and Palliative Care. Beloved Al and offering his thoughts on home based and telemedicine palliative care. Mr. Pat Coyne calling for a benefit for palliative care for everyone.
00;22;00;20 - 00;22;06;25
Dr. Tracy Fasolino
Ginger Marshall offering insights why you might consider a career in palliative care and hospice.
00;22;06;26 - 00;22;33;09
Edo Banach
The call to action actually, I think for consumers and for family caregivers is some sort of organized support in Medicare itself for long term services and supports so that as people are declining those last ten years, I'm not even talking about palliative care, I'm talking about folks falling down their stairs. I'm talking about some system that actually helps family caregivers and provides additional community support.
00;22;33;09 - 00;22;35;16
Edo Banach
And it would pay for itself.
00;22;35;16 - 00;22;36;00
Dr. Betty Ferrell
The country should take this very
00;22;36;00 - 00;22;39;28
Dr. Betty Ferrell
Seriously and we should have, you know, policies
00;22;40;12 - 00;22;42;00
Dr. Betty Ferrell
And reimbursement.
00;22;42;07 - 00;22;46;23
Dr. Betty Ferrell
You know, financing that support this level of care.
00;22;46;25 - 00;23;06;19
Dr. Wayne Hollinger
Not supporting palliative care and hospice care is false economy. In the long range it costs you more money because you have patients coming back and forth to the E.R., back and forth to the hospital, having things done that they get no benefit from. And it causes them to be dissatisfied with the service.
00;23;07;01 - 00;23;21;17
Al
I would recommend palliative care to anybody with any serious disease. Gives the caregiver relief also. [Mr. Pat Coyne]: I think it just should be a benefit that every American gets good health care.
00;23;21;17 - 00;23;57;28
Ginger Marshall
I always push back a little bit when somebody says hospice and palliative care is about hand-holding because it's about so much more than that. It’s about being able to use your compassion, being able to use your brain. For me, one of the best things about working in the field of hospice and palliative nursing is it is extremely rare for you to walk out of a family meeting or a patient encounter and not have this sense that you have actually accomplished something with every patient who you’ve seen that day.
00;23;58;16 - 00;24;22;20
Dr. Tracy Fasolino
The point of all this is to light your passion for spreading the word and advocating for palliative care for all those struggling with serious or chronic illnesses, and to be bold in talking about hospice services. Folks want to hear your amazing experiences. You heard in the first episode that I'm sold out for palliative care and hospice. I've seen the benefits,
00;24;22;28 - 00;24;50;18
Dr. Tracy Fasolino
witnessed the joys. Let's change the narrative and help our husbands, wives, children write some amazing chapters during their serious illness and at the end of their life. I encourage you to ask for palliative care. Don't take, “I don't know anything about it” or “no” for an answer. Ask for hospice services. Find high quality organizations that can meet your needs and your family’s.
00;24;51;19 - 00;25;08;17
Dr. Tracy Fasolino
Let's keep building our voices. Reach out to your congressman or congresswoman. They want to hear from you. And let's not lose momentum.
00;25;11;02 - 00;25;38;25
Dr. Tracy Fasolino
Thanks to all my peers that took time out of their crazy busy schedules to be interviewed and share their stories and passion and work to create a world that is more gentle, loving and inclusive. Special thanks to Jeff Byers for his amazing mentorship and patience while working through the multiple episodes of this podcast. Thanks to the Health Affairs team for providing an avenue to share our stories and shout out to my Clemson University peers.
00;25;38;26 - 00;26;25;19
Dr. Tracy Fasolino
Go Tigers! Really appreciate you, Ben and John. Love to my husband and daughter. Thanks for letting me spend hours to share this story. Music, melody, and production by Elias Workman, Dorman High School student. I see great things in your future.