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This episode highlights one family’s story with home-based palliative care and telemedicine palliative care. Host Tracy Fasolino presents four challenges facing palliative care and hospice services right now.
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.
Unique series are created by fellows at Health Affairs Podcast Fellowship Program, designed to support early to mid-stage professionals pursue an audio project, tell a unique health care story, and highlight voices that may not be heard otherwise.
Join the Health Affairs Podcast Fellows on their journey to unearth a new health care story on such topics as health care consolidation, independent primary care, behavioral health, climate change, health equity, and more.
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00;00;00;20 - 00;00;31;03
Dr. Tracy Fasolino
Welcome back to the second episode of “No One Gets Out of Here Alive”. In this episode, we're going to highlight four challenges that are plaguing our palliative care and hospice services right now. And we're also going to hear from a patient and his caregiver on their experiences with home based palliative care and telemedicine pulmonary palliative care. In the past episode, we learned about the legislative acts that brought Medicare Hospice Benefit to patients dealing with serious illnesses.
00;00;31;16 - 00;00;51;29
Dr. Tracy Fasolino
We also heard about how palliative care has uncoupled from hospice to fill in gaps of care for those that are not eligible for hospice. Now, some of the legislation and policies have helped move these services forward over the past 40 years. We have a long way to go if we really want to meet the needs of those with chronic and serious illnesses.
00;00;52;08 - 00;01;20;09
Dr. Tracy Fasolino
You know those 133 million Americans. My name is Dr. Tracy Fasolino. I'm guessing that the title of the podcast nor episode one scared you off. So welcome back. Let me tell you about Al and Wendy. It's a story of the positive impact of palliative care and ultimately hospice services. For the record, they both wanted this story to be told on the podcast.
00;01;20;16 - 00;01;42;23
Dr. Tracy Fasolino
Now, Al was diagnosed with in-stage COPD in his late forties. Because of the progression of his disease, he had to retire early. He gave up nearly all his hobbies, like fishing, and pretty much had to stay home all the time because getting out of the house was an ordeal. He was referred to me from the pulmonary team to help with his symptoms and overall quality of life.
00;01;43;23 - 00;02;05;22
Dr. Tracy Fasolino
At the time of the interview, he had just turned 55 years old. They live in a rural community with a population of about 225 people. The next closest town was about eight miles away. Now, Al's functional status, you know, his ability to get up and get around, shave, those kinds of things was very limited because of his shortness of breath.
00;02;06;28 - 00;02;34;28
Dr. Tracy Fasolino
His wife, Wendy, was his primary caregiver and was at his side nearly 24 hours a day, seven days a week. I didn't physically meet Al until 2022, nearly four years after our first encounter. He lived almost an hour away from the pulmonary office, and it was just too exhausting to come in. So we used technology, that virtual platform of care delivery that exploded with the COVID pandemic.
00;02;35;24 - 00;02;44;28
Dr. Tracy Fasolino
This interview was recorded in mid-July of 2022. I was just asking Al and Wendy, how they got to be involved with palliative care.
00;02;45;04 - 00;03;11;16
Al
I was in the hospital for COPD exasperation. They was wanting to give me morphine because the morphine would break the spell. In order to get the morphine, I had to start with the palliative care.
00;03;12;06 - 00;03;35;06
Dr. Tracy Fasolino
Al needed this liquid morphine to help control the crisis episodes of the shortness of breath. It wasn't a daily need, just occasionally. And just to clarify, he didn't enroll with hospice. He enrolled with pulmonary palliative care, layered with home based palliative care. Now, Wendy would go on to describe why she wanted palliative care.
00;03;35;14 - 00;03;48;21
Wendy
There was no way to transport him to the hospital, to the doctors, and it was just real convenient that they would come here to the house. They do x-rays at the house. They do blood work at the house.
00;03;49;06 - 00;04;14;24
Dr. Tracy Fasolino
Now, home based palliative care is an evolving model of care for patients with ongoing serious illnesses. The trouble is insurance coverage for the interdisciplinary team. Challenge number one, there is no existing Medicare benefit or insurance coverage for the interdisciplinary palliative care services. Now, that's not to say there aren't some demonstration models and some Medicaid systems offering this benefit.
00;04;15;14 - 00;04;40;12
Dr. Tracy Fasolino
We'll come back to that. So essentially, I was a singular provider helping Al and Wendy with their needs, but there were gaps. I couldn't offer them expanded palliative care and nurse practitioners, PAs (physician assistants) and physicians use the fee-for-service system, the traditional payment model of health care. You know, the idea that providers are reimbursed based on the number of services they provide.
00;04;40;25 - 00;05;04;18
Dr. Tracy Fasolino
And in my world, it takes 40, 50 and sometimes 60 minutes to navigate through these conversations. We need to talk about symptoms and their goals, and when they're ready, end of life wishes. As a matter of fact, sometimes my patients are completely shocked that they’re still talking to me after 25 minutes. Wendy, what is it like? You know, over these years?
00;05;05;11 - 00;05;37;00
Wendy
It's been awesome because it's a lot on me to try to load him in a wheelchair. Oxygen tanks in the wheelchair, I mean, to get everything in the car or get him in the car and have to unload, it's just, it'll be an all day event. When they come to the house, I mean, everything's took care of. And I tell people, you know, when they're in a situation where they can't hardly make it to the doctor's office to ask about the palliative care because we have nothing but great things to say about it.
00;05;37;18 - 00;05;50;24
Wendy
I just, I keep telling people how wonderful, I mean, he would not get the care that he needs if it were just me having to take him to a doctor visit.
00;05;51;23 - 00;06;23;24
Dr. Tracy Fasolino
Challenge number two: How to educate the public, policymakers, legislators and health care providers about palliative care and how it can be provided outside of hospice enrollment. Would a public campaign on how, where and when to ask for palliative care help? Or maybe even a roadmap that outlines all these services? Just something to consider. I was curious about how Al felt being on home based palliative care combined with telemedicine.
00;06;23;24 - 00;06;25;02
Dr. Tracy Fasolino
Pulmonary palliative care.
00;06;25;20 - 00;06;35;22
Al
It’s a lot better than it was before I started receiving palliative care.
00;06;36;09 - 00;06;51;08
Dr. Tracy Fasolino
I also asked him how often he had been to the emergency department since he's been under the services of palliative care. Patients with COPD have frequent ER visits because they get in trouble and then they get really panicky and they can't breathe.
00;06;51;22 - 00;07;05;01
Al
Well, a few times, but not as often as I was before I started palliative care, I was at, go to the hospital more frequently.
00;07;05;01 - 00;07;15;13
Dr. Tracy Fasolino
Indeed Al had less frequent ER visits and nearly no hospitalizations for the first several years that he was under the services of palliative care. Wendy also offered her perspective.
00;07;15;13 - 00;07;41;03
Wendy
Medical attention was going to the emergency department and still they do not know how to treat you like a palliative doctor would. They do not understand the COPD part. They just, they don't get it. And you really, as any elderly or COPD patient, I mean, you really need a family member there to be your advocate.
00;07;41;21 - 00;07;58;13
Dr. Tracy Fasolino
By now you're probably wondering how in the world does Wendy hold this all together? Being a caregiver 24 hours a day, seven days a week, 365 days a year, it's incredibly taxing, both physically, psychologically and emotionally.
00;07;59;25 - 00;08;19;06
Wendy
I don't want to cry. I try to be strong in front of him. To breakdown in front of him is major. But I just, I garden and try to keep my sanity. I do not hardly leave the house. He's been home from the hospital for seven days.
00;08;19;22 - 00;08;36;20
Dr. Tracy Fasolino
And had been hospitalized early in 2022 with an exacerbation that required about four or five days of hospitalization to determine that it was strictly COPD related. At that point, he was showing some signs of heart involvement because of his lung condition.
00;08;37;01 - 00;08;56;23
Wendy
Still bedridden. And he's not but 55 years old. I mean, and I know it's a lot on him to accept and sometimes I don't think he has accepted, but I mean, I had to do it all, I’m the counselor, I’m the nurse, I’m the mate, I’m the chef, I’m the mechanic.
00;08;57;20 - 00;09;24;06
Dr. Tracy Fasolino
As you can tell, Wendy was a critical part of Al’s caregiving. As a palliative care nurse practitioner dealing with his pulmonary situation, I met with him nearly monthly through telemedicine platform. We did a lot of adjustments in medications and talked a lot about how he was doing day to day. I coordinated the care with the home based palliative care company to make sure that we weren't overlapping or fragmenting care.
00;09;25;16 - 00;09;52;25
Dr. Tracy Fasolino
Shortly after our interview, Al did end up back in the hospital with another spell with his lungs. He had never really embraced the philosophy of hospice. Wendy called me the day that he was admitted and I could hear the urgency in her voice. She seemed to understand that there was not going to be a going home this time. Over that next week, the hospital team did a great job trying to help out and possibly get him home.
00;09;53;03 - 00;10;19;18
Dr. Tracy Fasolino
Al was ultimately transferred to the hospice house, this peaceful home like residence where terminally ill patients can receive short term hospice care. He just wasn't able to go home. His medical needs at the end of life were ongoing. There were daily switches in medications and adjustments that were required. You know, plus, Wendy was able to stay with him in the role of his wife during his last days and get some much needed help and rest.
00;10;19;22 - 00;10;41;24
Dr. Tracy Fasolino
The team at the hospice house took excellent care of him over that period of three weeks. He was comfortable. He was resting better. And most importantly, he was not struggling to breathe. Al died peacefully on August 9th, 2022, holding Wendy's hand. I count it an honor and a privilege to have been able to help him and Wendy navigate through those last years of his life.
00;10;42;08 - 00;11;20;25
Dr. Tracy Fasolino
There's much to learn from Wendy and Al’s story. We’ve highlighted the two challenges. There are gaps in interdisciplinary palliative care benefits and then how to educate our communities about palliative care. You may be wondering why didn't Al enroll in hospice sooner? I can assure you we did talk about it, but he just couldn't embrace it. He felt he was too young to be enrolling in hospice and too young to die.
00;11;23;17 - 00;11;47;00
Dr. Tracy Fasolino
Our beloved Al, access to hospice house for the last three weeks of his life. You know, ideally, patients would benefit from hospice much sooner than the last moments, days or weeks of their life. And reflecting on how our society talks about enrolling and using hospice, I've noticed we tend to whisper the word hospice and said hospice as if to say we don't want anybody to know.
00;11;47;01 - 00;12;11;24
Dr. Tracy Fasolino
Or maybe it's because we're being more reverent. I'm not sure. What I'd like to see happen is that we boldly say, “my mother enrolled with hospice” or “my husband made his wishes known and has embraced using hospice as a way to live out his life the way he wants to.” Because it's really not about giving up. It's about creating the story that they would want.
00;12;12;05 - 00;12;41;21
Dr. Tracy Fasolino
But could there be issues with our current hospice organizations? Health and Human Services Office of the Inspector General found significant problems with quality care issues and improper billing in the Medicare hospice program. Nancy Harrison, Deputy Regional Inspector General Office of Evaluation and Inspection, stated, quote, “We've done extensive work on hospice programs. We've done evaluations, audits and civil and criminal investigations.
00;12;42;04 - 00;13;10;26
Dr. Tracy Fasolino
And through that work, we've identified vulnerabilities,” end quote. She would go on to say that hospices do not always provide needed services, and sometimes they provide poor quality care. This in light of the fact that Medicare Part A paid nearly 21 billion for approximately 1.5 million beneficiaries on hospice care in 2019. Now, one particular pattern that I find troubling is hospice disenrollment, which is also referred to as live
00;13;10;26 - 00;13;38;22
Dr. Tracy Fasolino
hospice discharges. In an estimated 18% of the patients each year disenroll or are discharged from hospice services. A live discharge from hospice can occur for a number of reasons. First, the patient and their family member may choose to revoke hospice, or secondly, they leave hospice altogether because what they really needed was some home based care. And as of right now, the patient doesn't get around the clock care through hospice.
00;13;38;29 - 00;14;07;29
Dr. Tracy Fasolino
Typically, it might be 1 to 2 hours a day and that's generous. And as you heard from Wendy, being a caregiver is a tough job. One thing I hear from my patients is, why do I have to give up my family doctor and my cardiologist? It's a reasonable question, but I take a minute to educate them. They actually can see their PCP or their specialist, as long as it's not for the same reason they enrolled in hospice.
00;14;08;17 - 00;14;36;24
Dr. Tracy Fasolino
For example, a patient might enroll with hospice because of COPD, so their pulmonary management actually falls to the hospice team, but their diabetes can be managed by primary care. Of course, they have to continue paying their co-pays and deductibles under their current Medicare benefits, such as their Medicare Advantage plan. But the research suggests that the majority of live discharges actually occur because the patient's condition has stabilized or even improved.
00;14;37;17 - 00;15;09;00
Dr. Tracy Fasolino
Our research actually shows that when a patient enrolls with hospice, they do better. Kudos to the hospice folks for getting the patients better. But what a conundrum. It's a challenging situation for the patient and the caregiver, as well as the hospice organizations. They have to abide by the Medicare eligibility and at times their hands are tied. A concern with a hospice live discharge is that it may reflect some improper behavior on behalf of the hospice organization.
00;15;09;29 - 00;15;42;16
Dr. Tracy Fasolino
This pattern of hospice discharge, followed by hospital admission and then by hospice readmission, you know, may represent a family who's panicked. Now, I know firsthand the challenges of a live discharge from hospice. I've recently received two patients discharged from hospice and been referred back to our pulmonary palliative care services. Now, these patients didn't opt out of hospice. They actually were discharged from hospice because it was viewed that they were stable after a period of three months or six months.
00;15;43;21 - 00;16;12;12
Dr. Tracy Fasolino
But keep in mind, when a patient enrolls with hospice under the Medicare benefit, a number of things occur usually. They may have to change medical supply companies because that hospice organization doesn't have a contract with the company that they're currently using. So when they come back to me, I have to start all over again and get them requalified for their oxygen or for some other equipment, or they may have medicine started that was covered under the Medicare benefit for hospice.
00;16;12;23 - 00;16;40;08
Dr. Tracy Fasolino
But once they're discharged, that medicine is no longer covered or only partially covered. You know, I've seen that frustration in the eyes of the patient, in the family members when they've been discharged from hospice. It's not as if their disease has gone away. It's just that they have been stabilized. But the gaps that are created from a live discharge back to a primary care provider or a specialist like the pulmonary or cardiology team is huge.
00;16;40;25 - 00;17;04;20
Dr. Tracy Fasolino
None of these offer an interdisciplinary home based care team like hospice. Challenge number three: How do we provide the services needed for patients when their life expectancy is more likely two years, or they're going to cycle up and down without any evidence of continued decline?
00;17;06;21 - 00;17;33;29
Dr. Tracy Fasolino
We have one more point that we need to unpack with regard to hospice, and it has to do with quality care. Just as Nancy Harrison pointed out, hospice programs don't always provide the needed services and sometimes they provide poor quality care. Such is the case that's ongoing in the Southern district of Mississippi, where a hospice organization was found to have submitted claims for Medicare patients that weren't actually eligible for hospice.
00;17;33;29 - 00;17;59;29
Dr. Tracy Fasolino
And they also did not provide the services they were supposed to under the hospice benefit. Now, this particular company paid close to 6 million in 2018 to settle some similar allegations. They settled for a fraud case of 24.7 million back in 2009. Do I hear a strike three? The leading cause of Medicare fraud does involve hospice billing for services in which patients were not eligible.
00;18;00;15 - 00;18;28;20
Dr. Tracy Fasolino
And there's been several multimillion dollar settlements during 2020 with amounts ranging from 1 million to $5 million. Challenge number four: How are we going to address these gaps in hospice services and poor quality care by some of our hospice organizations? And if we ever do get a palliative care benefit, how are we going to regulate these groups to hold them accountable to the services they market and advertise for?
00;18;29;26 - 00;19;02;13
Dr. Tracy Fasolino
During this episode, we identified four challenges facing palliative care and hospice services. Number one, a missing interdisciplinary palliative care benefit. Number two, educating folks that palliative care can be used without hospice enrollment. Number three, ensuring that non-cancer patients receive the services they need to improve their quality of life. Number four, addressing quality care by hospice organizations so that we don't duplicate these issues when instituting a palliative care benefit.
00;19;03;15 - 00;19;32;12
Dr. Tracy Fasolino
Now, there's many more issues related to palliative care services and hospice delivery, but these are the four most prominent in my world as a nurse working with patients with non-cancer illnesses. Just as you heard from Al and Wendy, they're trying their best to get the care that they needed. I know it all sounds daunting, almost depressing. But the good news is that we do have some policies and legislation that are going live or in process to address these four challenges and some of the other issues.
00;19;33;13 - 00;19;42;23
Dr. Tracy Fasolino
Listen in for episode number three, the final piece, for the answers and a glimpse at the future of palliative care and hospice services.
00;19;47;18 - 00;20;28;27
Dr. Tracy Fasolino
This episode is dedicated to Al and Wendy for being such great teachers and having so much patience with me. May you rest and breathe in peace, Al. Music, melody, and production by Elias Workman, Dorman High School student, an up and coming rock star. Appreciate you liking, commenting and sharing this podcast with others. Let's get this information out to your families and communities.