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Sterling et al 2023 Navigating Home Care in the US

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Sterling et al 2023 Navigating Home Care in the US

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Time Stamps

03:05 What is hospice care and its philosophy?

06:15 Who qualifies for hospice?

08:19 Who makes up the hospice interdisciplinary team?

17:25 Who pays for hospice?

21:34 What are the different levels of hospice care?

31:59 What are some limitation of the hospice Medicare benefit?

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Behind the Scenes Interviews

Show Notes
Pearl 1: Philosophy of hospice

Hospice is the shift in focus of care from curing the illness to focusing on comfort, pain relief and symptom management.
Don't forget that comfort includes more than physical comfort.

Pearl 2: Who qualifies for hospice?

To qualify for hospice a patient must have a terminal illness.
Medicare defines a terminal illness as a prognosis of <= 6 months, which must be certified by two physicians

For patients who live longer than that 6 months, a physician or NP will need to re-certify every 2 months

The Local Coverage Determination: policy used to determine hospice coverage

Pearl 3: Who makes up the hospice team? Pearl 4: Who pays for hospice?

Most insurance follows the Medicare system in which a patient who is enrolled in hospice will then have a Hospice Benefit that directly covers medical, nursing, counseling, and bereavement services.
Unfortunately, this means that many of our uninsured patients face challenges when enrolling in hospice.

The hospice agency is then paid a fixed daily rate for every patient in hospice based on the level of care. This fixed rate includes medications, DME and personnel.

Pearl 5: What are the different levels of care and what are the limitations of the hospice benefit?

There are 4 levels of hospice care

Routine level of care
Takes place at home (nursing home, assisted living, independent living home, etc) where the hospice team comes to see the patient as needed.

General Inpatient Care (GIP)
Takes place in the hospital or at a GIP hospice facility for patients who need management of uncontrolled symptoms that cannot be provided at home.

Respite care

For patients already enrolled on hospice services with an agency

Short term care to relieve the beneficiary's caregiver for up to 5 consecutive days.

The patient will go to an inpatient hospice facility, SNF or hospital.

Continuous home care
For brief periods of crisis when a patient needs continuous care in the home setting.

Patients qualify for different levels of care based on their symptoms, which is challenging as it still requires significant assistance from the patient's caregivers.

Transcript
Bryanna Tobin: Sometimes we think about hospice and we think, oh, well, this person's going to die in six months. You know, ask anybody what hospice is. And that's probably what they're going to say if they understand even kind of a little bit about hospice. But the nuances that we don't really talk about or reflect upon enough is that you can't have the end of life and the challenges of the end of life without the joys of being alive. They come together. We are born, we die. We exist in a dichotomy throughout our entire lives. So hospice is not just about dying, but it's about living.
Dr. Shreya Trivedi: That's Bryanna Tobin, a music therapist with the Good Shepherd Community Care and Hospice. And welcome to the Core IM podcast, I'm Dr. Shreya P. Trivedi.

Dr. Mahathi Komaragiri: I'm Dr. Mahathi Komaragiri.

Dr. Shreya Trivedi: Both Mahathi and I are internist and we are so excited to be joined by one of our favorite palliatve care attendings, Dr. Harry Han.

Dr. Shreya Trivedi: Thanks for joining us. As internists, we interface with hospice all the time. But really I think most of us have superficial knowledge of hospice care.

Dr. Mahathi Komaragiri: Same, I get so many questions from my patients and their families about what will happen when they're on hospice? What does hospice even cover? Can hospice just happen in the hospital?

Dr. Harry Han: There is a lot to cover. So this is a 2 part series on hospice. This first episode focuses on the nuts and bolts of hospice care, but it's important to understand how hospice is structured before we get into the more practicalities that internists may face. This first episode is sort of like eating your veggies. It may not be as enticing as the newest insert-witty cardiology trial acronym, but it's important.

Dr. Shreya Trivedi: Yep, the second episode will be more nuanced management choices after the decision of hospice is made. It will be a good application of the nuts and bolts we learn in this episode.

Dr. Mahathi Komaragiri: Yep, so today we are gonna get into (1) philosophy of hospice, (2) who qualifies, (3) who makes up the hospice team, (4) who pays for it, (5) what are the different levels of care, and lastly and maybe most importantly, what are the limitation of the hospice benefit.
WHAT IS HOSPICE CARE AND ITS PHILOSOPHY?
Dr. Harry Han: And some disclaimers ... of course 1) today's podcast covers hospice care in 2023/2024 in the United States. And 2) There is wide variability in hospice agencies across the country, so our hope is to give a general overview, but there may be nuance with your local agency partners.

Dr. Shreya Trivedi: We also recognize and appreciate our international listeners and would love your comments on how hospice in the US compares to end of life care structures in your country.

Dr. Shreya Trivedi: So I guess we should start with what is hospice and make sure we are all on the same page?

Roger Schrader: One thing that I always stress, especially if it's something that families are confused about, hospice does not mean the end of medical care. It's not giving up on somebody when they go on hospice. It's a shift in focus from quantity of life to quality of life. And a patient who comes onto hospice is still receiving medical care, it's comfort focused medical care.

Dr. Mahathi Komaragiri: That's Roger Schrader, a social worker at Good Shepherd Hospice. And here's how Roger defines comfort-focused care.
Roger Schrader: We're not saying, okay, you're on hospice. Here is your morphine and we'll be by in three weeks to see how you're doing. Take it as you need it. No, it's, if anything, it's it, it's an increase in attention in some respects. We don't hasten death, we don't slow it down either. We just approach what's going on moment by moment, whether it's day by day, week by week, or hour by hour, or as somebody's actively dying minute by minute to ensure that comfort.
Roger Schrader : It's not a decrease in the medical attention that they're getting. They're still getting it, but it's a comfort focus and that it's a holistic approach to comfort. It's what makes you emotionally comfortable? What makes you spiritually comfortable? What makes you psychologically comfortable? How can we reduce your anxiety and provide you a comfortable environment as you approach the end of life? And I think that's a side of hospice that, doesn't get discussed as much because it's not as imminent. It's not as immediate when somebody's at the end of life preserving their physical comfort is paramount, obviously, but also knowing that hospice goes out of its way to address emotional and spiritual and psychological needs as well to in ensure in a non-medicinal way.

Dr. Shreya Trivedi: I love how he brings up all the different aspects of comfort. And wording around "emotional, spiritual, psychological, and physical comfortability" will be helpful to have in the back pocket because I know patients and families are often thinking "oh once the hospice label is there, they will be left alone and won't be taken care of as much."

Dr. Mahathi Komaragiri: I really love that. I think I'm going to take this we approach things moment by moment and how we are not hastening the dying process into my next goals of care discussion. It just makes me realize how much upfront education we sometimes need to do when we are transitioning someone to hospice and I really appreciate restructuring how to think about this.

WHO QUALIFIES FOR HOSPICE?

Dr. Shreya Trivedi: Ok so now that we know a bit more the philosophy behind hospice is, lets go over briefly how one qualifies for hospice?

Dr. Mahathi Komaragiri: To get into just that, we sat down with Dr. Gillian Sutton, the medical director at Good Shepherd.

Dr. Gillian Sutton: Now, Medicare will define a terminal illness as an anticipated prognosis of six months or less. So when someone comes on hospice, part of the criteria and definition I guess you could say is that two physicians certify that they have an anticipated prognosis of six months or less.
Dr. Gillian Sutton: So after those six months, they require a physician or a nurse practitioner to check in on them every two months. And it's easy for me to remember because I think about it that we anticipated they would have a six month prognosis, but here they are still alive six months later. So they want you to check in every two months after that to re-certify the benefit, to re-certify that you still believe they have an anticipated six months or less prognosis.
Dr. Harry Han: Totally. I'm remembering an At the Bedside Core IM episode from 2020 on Prognosis. The guest Dr. Alex Smith, suggested using prognostic calculators AND getting input from multiple clinicians improves prognostic estimates.

Dr. Shreya Trivedi: I guess one thing I do worry about-what if despite these prognostic calculators or getting input from the PCP or say oncologist or pall care doc, what if we estimated wrong and the patient lives longer than 6 months. Does hospice just say sayonara?
Dr. Gillian Sutton: In order to be participating in the Medicare hospice benefit, you have to be providing the interdisciplinary team, which includes the physician, the nurse, social worker, bereavement, and then there are additional therapies, supplemental therapies, which we provide music therapy, art therapy, pet therapy. Roger Schrader: Social work and nursing are the two that do the most home visits with the nurse seeing the patient probably more so than anybody else other than personal care aid if they have one.
WHO MAKES UP THE HOSPICE INTERDISCIPLINARY TEAM?
Roger Schrader: My primary job is to provide non-medical support to patients in their families, which can be anything from making referrals to other programs or to community resources and providing emotional support as needed. If it's not directly related to managing the illness, it's probably my job in some way, shape or form. And the material support that provide, I mentioned providing bringing in outside resources as needed, but also making funeral arrangements if need be. Making sure that any cultural or religious traditions or rights or whatever need to be honored.
Dr. Mahathi Komaragiri: Okay, so let's say we have a patient who has qualified for hospice, a common question I get is who is gonna be involved in taking care of them in hospice?

Dr. Mahathi Komaragiri: Yeah, and we heard the social worker is also going to be one of front-line clinicians and there is so much they do.

Dr. Shreya Trivedi: Wow, so grateful to hear there is someone on the hospice team to help with these aspects. I know the funeral and cultural end of life traditions can be stressful for many.

Dr. Harry Han: Exactly, and on top of that, hospice agencies are also required to have bereavement counselors that provide a minimum of 13 months of bereavement support to families after a patient dies. And the reason for at least 13 months, we want to support loved ones through the 1 year anniversary of the patient passing.

Dr. Mahathi Komaragiri: Wow, that is actually incredibly thoughtful.

Dr. Shreya Trivedi: Absolutely. Then there are other team members who also support patients as well, like music therapists like Bryanna.

Bryanna Tobin: I am a board certified music therapist. Basically my role on the team is to work with families, to use music as the medium to achieve a goal, a clinical goal of some kind. So often when I'm working with our hospice patients and their families or their advocates and their care teams, it looks any number of ways, and it's really hard to make a blanket statement, but some examples of a goal that we may be working to achieve are increased opportunities for relaxation, increased quality of life, and meaningful connection between family members. Legacy projects. Sometimes we work with individuals to write songs about their lives, to do autobiographical work or to do any number of things that can be emotionally processing, can be emotionally expressive.
Dr. Gillian Sutton: Home care aides, which is what we call hospice aides, that's often the member of our team that families need the most helping literally with personal care and bathing their continents issues and things like that. There's a huge variation of how many hours that different companies will offer, how many aide hours.
Dr. Shreya Trivedi: This reminds me I recently had a patient worked with a music therapist and it was just a day and night difference in her anxiety and pain control. Worked way better than the hydroxyzine. that I prescribed!

Dr. Mahathi Komaragiri: That is such a testament to how therapists can really impact care. And on the other hand, on the physical help side things, one of the most necessary people to support the patient and family are the home health aides or home care aides.
Dr. Gillian Sutton: We determine our nursing frequency visits based on the needs of the patient. I think there are some differences between organizations on how frequently visits get done. We have a spectrum of daily visits too as little as every other week. We really try to get in there once a week just because it seems to lead to better outcomes. But some people end up needing daily visits. It's common to get two or three a week. We do have many patients that are seen on the weekends as well.
Dr. Shreya Trivedi: Okay, so if there is huge variation in the number of hours the hospice aides have to help with our patients, how frequently does the care team come out to the home? I know a lot of patients have questions on how many hours.
Dr. Gillian Sutton: With any transition of care, whether that's the care setting or just a new care team, it takes time to get settled and get your symptoms managed to get things in the home, not just in the home, but set up to get everyone comfortable using it in a routine with the team that members that you know. Your aid, your medication's settled, your symptoms well managed. But also once things are settled and your symptoms are somewhat well managed, then you're able to better enjoy where you're at. I think some of our patients, once we're able to get in there and providing frequent nursing and getting our aid, especially at a lot of the facilities, people are able to thrive because they're getting checked on. But the families feel more supported in providing that care because they know if something goes wrong, they can reach out to us.
Dr. Harry Han: Yeah, first and foremost I often have to counsel patients and families that hospice doesn't move in the home to provide 24/7 care. Here's Dr. Sutton's take on this.

Dr. Harry Han: Right. I also counsel that the initial transition onto hospice services those first few days can be busy. The hospice team is trying to get symptoms settled, meet the family, get things set up.

Dr. Harry Han: When Dr. Sutton says they can reach out to us, she means patients and families can contact the hospice at any time. Hospice agencies have a 24-hr telephone access line to provide guidance to patients/families in case symptoms or concerns arise. The hospice can provide recommendations over the phone or send a team member out, like a nurse, even at 2 am, to evaluate the patient.
Dr. Gillian Sutton: When someone comes on hospice on the consent form, it actually has a blank spot that is asking who they want their attending of record to be. What doctor do they currently follow with who they want also to follow them while in hospice. I think that the consent forms could explain this a little bit better, but what they're actually asking is what doctor do you want to keep seeing while you're on hospice? It is important because that doctor can bill insurance and get paid for seeing them just the same while they're on hospice. So when people are asking me what I write in there, I phrase it as not who do you want your attending of record to be? Because that wouldn't mean much to a family member or a patient. I say, which doctor do you want to keep following with while you're on hospice?
Dr. Mahathi Komaragiri: Thats reassuring. So patients and families have a consistent point of contact for medical questions in case of concerns or emergencies rather than families panicking and presenting to the hospital.

Dr. Shreya Trivedi: Good to have that point of contact! Ok, last thing, what about the patients long-standing PCP or oncologist or you, Harry, the pall care doc, can the patient still go see them? Will that be covered?

Dr. Harry Han: So basically whoever the patient designates as the attending of record, that is the outpatient clinician that can bill for seeing the patient is on hospice. Now for other outpatient clinicians, theoretically yes patients can see those clinicians, but there is a question of who pays for that outpatient visit. So we counsel patients to speak with hospice agencies directly before making routine outpatient appointments.
Dr. Gillian Sutton: All of the private insurance companies as well as Medicaid, they kind of follow the Medicare guidelines. But if I'm ever referencing the guideline or a regulation, those are all specific to the Medicare hospice benefit.
Dr. Mahathi Komaragiri: Ok, so to summarize, hospice mandates an interdisciplinary care team. On the frontlines you're going to have a hospice nurse and social worker working with a clinician overseeing the process and there for any backup. Then, there are also home health aides, music therapists as well as possibly at least one outpatient doc that the patient can continue to see.

Dr. Shreya Trivedi: Ok, so now lets get into the money aspect of it! I am always humbled and surprised by this. So let's get into it. Who pays for hospice? And how much?
Dr. Gillian Sutton: We're all paid that same daily rate and it's how you use that rate and what happens when it's left over.
Dr. Harry Han: Right. So, when patients enroll on hospice, the Hospice Benefit takes over of the patient's Medicare or private insurance plan. The insurance pays the local hospice agencies directly for the medications, medical equipment like oxygen tanks, commodes, and hospital beds, and team - the medical, nursing, counseling, and bereavement services.

Dr. Shreya Trivedi: So if hospice is an insurance benefit, is it a fee for service like the most of outpatient US healthcare? Or something else?
Dr. Gillian Sutton: When you think about the physician salary, the nursing visits also paying the home care aide, there's a tremendous amount of administrative work that also goes along behind the scenes. Not just processing different things but making sure that you're keeping up with regulatory components. So we have a large admin staff thinking about all the meds that are covered that are related and required for comfort and then any of those interventions that we're talking about, all of that gets paid for by how much you're given your daily rate by the insurance agency.
Dr. Shreya Trivedi: What? Every agency gets paid the same no matter how complex the patient may be?

Dr. Harry Han: Yep! The agency receives a fixed daily rate for every patient on hospice, around $210-215 per day if a patient is receiving hospice at home. There is a fudge factor to this amount depending where someone lives in the US, +/- 10-20%.
Dr. Gillian Sutton: I mean it is interesting that some places will provide much less home aide hours and some will provide much more or the nursing visit frequency, again all primarily directed should be directed by the needs of the patient. But it's hard to know how exactly those choices are made.
Dr. Harry Han: Yeah, so $210 may not be a lot when you account for medications, personnel, durable medical equipment, and administrative staff needed to deal with keeping up with all of Medicare's regulations.

Dr. Mahathi Komaragiri: Yeah, and then one that surprised me was that while Medicare provides some initial guidance, the hospice agencies ultimately decide how to use that money and what happens if there is leftover money.

Dr. Shreya Trivedi: No wonder there might be so much variability in hospice agencies- its really up to each agency about what they cover! So, to summarize I'm taking away, in typical home hospice settings (and we will get to other settings in the part), every patient on hospice is allotted a little over $200/day to pay for all the things (including medications, healthcare workers, admin staff, all of the above).

Dr. Mahathi Komaragiri: Before we move on, I can't help but connect how now that I know that hospice is an insurance benefit, I now understand why I've struggled with hospice enrollment for some of my uninsured patients. It makes sense, if a patient is uninsured, then they're not going to have a hospice benefit.
WHAT ARE THE DIFFERENT HOSPICE LEVELS OF CARE?
Dr. Harry Han: Yeah that part is really unfortunate. Sometimes we get lucky and a case manager calls me to tell me that the hospice agency is willing to do charity care, where they enroll someone on hospice who do not have an insurance benefit. Unfortunately, there isn't a good safety net for uninsured patients when it comes to end of life care.
Dr. Gillian Sutton: So one big misconception that a lot of families or patients have about hospice is that we move in that we have someone there around the clock or that you move somewhere, I guess a hospice house and then people are there around the clock. They don't realize that you can be on hospice services anywhere.
Dr. Shreya Trivedi: Yeah, so much room for improvement, here.

Dr. Shreya Trivedi: One big blindspot I've heard both from patients and families and I've heard even clinicians misconstrue to patients is where the hospice can actually occur.
Dr. Gillian Sutton: The majority of our patients are on routine level of hospice care and that is care that is taking place in their home wherever that home may be. That could be at a nursing home at an assisted living, an independent living home like I'm sitting in right now, wherever their definition of home is, we are providing care there.
Dr. Mahathi Komaragiri: Yes, technically speaking, there are actually 4 different levels of care where the hospice can take place.

Dr. Harry Han: Right, the teaching point here is that where hospice care really depends on what the hospice " level of care" for a patient is. Just like how there is outpatient care and inpatient care in the traditional medical care, in hospice, there is a similar distinction, with each level of care having its own criteria.

Dr. Shreya Trivedi: It sounds like the first level of care is "routine level of care," it's the interdisciplinary team coming to the patient wherever they live, be it live at home or if they are a long-term resident at a nursing home facility or assisted living facility.
Dr. Gillian Sutton: And then on the next layer of care we have general inpatient care. It is a higher level of care that is required in order to manage symptoms that could not be managed in the routine home care setting. But the simplest way to think about GIP level of care is IV interventions or frequent assessments that are not able to be provided in the home setting. There are certain facilities, but it's easier just to think about that in terms of getting that GIP level care at a hospital or a GIP hospice facility.
Dr. Harry Han: Yep routine level of care, I view it as akin to outpatient or ambulatory hospice care.

Dr. Mahathi Komaragiri: So what I takeaway from that is that for routine level of care, the hospice team will sort of come as needed depending on the patient's medical or psychosocial needs. But they are not there around the clock for general caregiving needs, like bathing and eating. For those needs, we really rely on caregivers at home or nursing/assisted living facility staff to help.
Dr. Gillian Sutton: So when people talk about a hospice facility, that could mean either a GIP level care or a residential level of care. So I think that it's pretty important to have a distinction between the two. Now just to draw a distinction, there are things called residential hospice houses that is not the GIP level of care that is not necessarily for higher levels of care, that's just for people who that is now going to be their home. They move there and they are going to be residing there.
Dr. Harry Han: So, let me make this analogy to cement things- if we think of GIP akin to acute hospital level care-then just like hospital admission, there has to be a medical reason for GIP admission. For hospice, it's uncontrolled symptoms, such as pain, uncontrolled agitation at home, bad nausea and vomiting, that cannot be controlled on routine level of care aka the "outpatient" level of care that happens in the home or in an extended care facility, such as SNF or ALF.
Dr. Gillian Sutton: We do provide aides, you have aides and you also have nursing care available around the clock to administer meds and wh atnot. But that is still routine level of care, just taking place at a residential hospice facility.
Dr. Mahathi Komaragiri: So GIP facilities and hospitals are staffed 24/7, similar to inpatient hospitals. But Dr. Sutton did caution us about how to use the term hospice facility.

Dr. Shreya Trivedi: I guess I need to be more specific when I say "hospice house" to our case managers and specify the level of care, either routine or GIP. Patients may go to dedicated hospice facilities because they may have severe symptoms that warrant GIP level of care or they are not need IV meds and that hospice facility is just like their new home under routine level of care.

Dr. Harry Han: So routine level of care at hospice facilities is similar to a patient being at a SNF, with aides and nurses present but maybe not at the level and intensity as they get on GIP.

Dr. Shreya Trivedi: I'm still thinking that $200/day.. Does that $200 cover everything at hospice facilities or at a SNF or nursing home?

Dr. Harry Han: So for the routine level of care at a SNF or residential hospice facility, its still about $200/day, so patients often have to pay out of pocket for room/board for these facilities.

Dr. Shreya Trivedi: And so then is it also the same $200/day to cover more intense care that is happening at GIP level of care in the hospital or in a hospice house?

Dr. Harry Han: Because patients on GIP are often symptomaticly sicker, potentially their death may be more imminent, and it's a higher level of care, the Hospice benefit does pay more for GIP, on average $1100/day for FY23 plus/minus depending on location.

Dr. Mahathi Komaragiri: Now that I think about it, even $1100/day is still not like a lot when you think about how it includes room and board, and round the clock care.

Dr. Shreya Trivedi: I'm so glad we clarified all that. This is all so eye-opening. And once enrolled on hospice, can patients transition between levels of care without having to dis-enroll on hospice?

Dr. Shreya Trivedi: Gotcha, patients can similarly flow between levels of care just like patients flow through inpatient/outpatient settings. You mentioned there are two other levels of care, a total of 4, - do you wanna go over those real quick?

Dr. Harry Han: These last 2 levels of care are less relevant to IM clinicians because its for patients have already been enrolled in hospice. But for completeness sake, the 3rd level is Respite. Respite care is short-term inpatient care provided to the patient when necessary to relieve the patient's caregiver.

Dr. Shreya Trivedi: I see, I see. I'm glad to hear that the hospice benefit covers something like Respite care! How long do caregivers get that relief?

Dr. Harry Han: Caregivers can receive up to 5 consecutive days where patients go to an inpatient hospice facility, SNF or hospital so caregivers can get a break or attend life functions. Respite care is usually prearranged and approved by the hospice agency for patients already on hospice services.

Dr. Shreya Trivedi: Okay, so that makes sense why we don't interface with it as much. What's the 4th level of care?

Dr. Harry Han: Then, the 4th level is continuous home care. This level of care manages an acute medical crisis (uncontrolled symptoms) as necessary to maintain the individual at home and usually means a nurse is consistently present in the home throughout the day to assess and manage uncontrolled symptoms. This again is usually a care decision made for patients already enrolled on hospice and less for IM clinicians who are making that initial referral.
WHAT ARE SOME LIMITATIONS OF THE HOSPICE MEDICARE BENEFIT?
Dr. Mahathi Komaragiri: So to summarize, there are four levels of care where hospice can occur. The main two are either routine care that takes place where someone already lives and then, GIP level care is for patients with uncontrolled symptoms requiring IV medications. GIP level of care can occur either in the hospital or a GIP-capable healthcare facility, such as a hospice house.

Dr. Harry Han: Yep! And it's important to note that at a hospice facility, patients can have be on routine level of care or GIP.

Dr. Shreya Trivedi: And to recap how much the hospice benefits pays, its about $200/day for routine level of care and about $1100/day for GIP care and with that $1100 room/board are covered by the Hospice benefit. On the other hand, if our patients qualify for routine level of hospice care and they are in a SNF or hospice facility, they would likely pay out of pocket for the room and board.
Dr. Gillian Sutton: We'll get referrals that a patient is dying, can we quick admit them to hospice? And while I see all the benefits of coming on hospice such as the support for the family, maybe bereavement services, support groups and things like that, if you don't meet the criteria for GIP level of care, it's not really appropriate to just admit people to hospice because they're dying in the hospital. So it really is determined by if they have symptoms that need to be managed in the hospital, that is how we really determine if we can do a GIP admission in the hospital setting. A lot of dying is quite peaceful, a lot of the dying process. So if someone is peacefully asymptomatically dying in the hospital, they wouldn't really meet criteria to be admitted to hospice in that hospital setting. And that is hard because the families will say, but they're dying and hospitals will also say to us, but they're dying and it's just tough. We have to justify why we can't care for that patient at home. You really need to have symptoms that cannot be managed in the routine home care setting. Roger Schrader: The weakness of the Medicare benefit is that it assumes that there's a care network in place. The assumption that there is going to be family in the home. When Good Shepherd got started, the primary illnesses that people had when they came on were cancer and they were already actively at the end of life. There was a short period of time on services and it was different, you know you would have to families or even if it was just one or two caregivers, there would be an intense few weeks and then it would be over. Now we have patients that are on for services for a lot longer than they historically were when the benefit got created.
Dr. Harry Han: In addition, there is respite care for those patients already enrolled in hospice to give caregivers a break for 5 days and continuous home care for an acute medical crisis.
Roger Schrader: We do our best and that's where part of my job is to arrange for that outside the home care. But you're talking private pay caregivers at that point in time and not everybody can afford it, even though they're not paid nearly as much enough for the work that they do, it still adds up very, very quickly when you're talking 24/7 or even eight hours a day, seven days a week, 40 hours a week. That adds up. When they come to us, here's what we offer. So we can offer you this and then here's this list of agencies that you can hire, but know that it could cost up to $30 an hour for a block of eight hours.
Dr. Shreya Trivedi: Let's close things out with a few of the limitations of the hospice medicare benefit.

Dr. Mahathi Komaragiri: One thing I always struggle with is when my patients who are imminent don't quite qualify for GIP level of care in the hospital.

Dr. Shreya Trivedi: Yeah same. Tons of family are like "No, we don't wanna move our dying family member. Can we please keep them in the hospital, they are so frail..." and those are tough and gut wrenching conversations. These are really reasonable questions, but I definitely feel a little stuck...

Dr. Shreya Trivedi: Wow, things have certainly changed with time, especially with medical advances and the Hospice benefit has yet to catch up with the gap! And yes while hospice does cover the medical aspects of care (which we will get into in Episode 2), but the thing that most patients and families often need the most-caregiving, custodial support for things like bathing and eating and those things are not covered 24/7.
Roger Schrader: And that when it comes to caregivers, that's from a social work perspective, that's the big deal is caregiver burnout because there's just not enough, not enough. Especially the dementia patients, when we have, I have a patient, her kids have, I don't know how many times they've taken a mortgage, a single property, but they've done it to keep her at home. But it's not uncommon to have patients that are on for a long lengthy period of time in that even with our support, it's emotionally exhausting, especially with somebody who has dementia that goes from having conversations to not being able to be say anything or is actively confused and personality changes and you've seen somebody, their personality dies before their body dies. Their personhood dies before their body dies.
Dr. Shreya Trivedi: $30 an hour? That's more than many childcare professionals!

Dr. Mahathi Komaragiri: I imagine that is why sometimes people consider becoming home health aides for their loved ones to be compensated and to make this more affordable.

Dr. Harry Han: Yeah, sadly, it's up to the patient's family to set up the caregiving OR they have to pay out of pocket for private help at home OR they have to figure whether their insurance covers the costs of room/board and care at a nursing home OR paid out of pocket for nursing homes.

Dr. Shreya Trivedi: Oh, man such a cognitive load. I really feel for our patients here.

Dr. Mahathi Komaragiri: Wow, that's such an intense process for any person, let alone a family member who not only is processing the fact that their loved one is at the end of life, but also having to do the heavy lifting in providing day to day care.

Dr. Shreya Trivedi: I'm so glad we are giving voice to this because I get a lot of moral distress telling people how great hospice will be where there are true limitations....this helps me prep patients with what is good about hospice and all that it provides but how they will likely have to fill in gaps with caregiving, especially if their loved one qualifies for routine level of care.

Dr. Mahathi Komaragiri: You know after this discussion, I wanted to close out with a quote that Bryanna Tobin said about how hospice is really about life and not about death. That to me is the true value of hospice and I really love how she framed that.

Bryanna Tobin: A hospice is not just about death, it is about life. And it is about making sure that your last month's, days with your person of significance are really meaningful. And to really advocate to get the most out of your hospice care and to really think about not closing the door on a therapy or a service that is offered because you're not sure of it, but to ask a lot of questions and then to also say that hospice is not something to be afraid of, and that we are, as a hospice practitioner, I promise I will not bite.

Dr. Shreya Trivedi: And on that note, that's a wrap for today's episode! Please share this with a colleagues or anyone who may find this helpful. There is a really beautiful behind the scenes Youtube interview with Byranna Tobin which is absolute gold.

Dr. Harry Han: And thank you to our reviewers, Drs. Helen Knight, Mara Feingold-Link, and Charlotte Grinberg.

Dr. Shreya Trivedi: Thank you to Daksh Bhatia for the audio editing. Opinions expressed are our own and do not represent the opinions of any affiliated institutions.

References

University of California San Francisco. ePrognosis Calculator.

Centers for Medicare & Medicaid Services. Hospice Determining Terminal Status.

Estell MH, Whitford KJ, Ulrich AM, Larsen BE, Wood C, Bigelow ML, Dockter TJ, Schoonover KL, Stelpflug AJ, Strand JJ, Walton MP, Lapid MI. Music Therapy Intervention to Reduce Symptom Burden in Hospice Patients: A Descriptive Study. Am J Hosp Palliat Care. 2024 Mar 19:10499091241237991.

Centers for Medicare & Medicaid Services. Hospice Coverage.

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Hospice 101: Nuts and Bolts | Core IM Podcast

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Time Stamps What is hospice care and its philosophy? Who qualifies for hospice? Who makes up the hospice interdisciplinary team?...Read full post

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Chapter on Home-based care services and community-based resources

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Chapter on Home-based care services and community-based resources

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Chapter 3 Geriatric Home-Based Medicine book