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• 01:20 Case 1
• 18:46 Case 2

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Show Notes

Transitioning to hospice

• A hospitalized patient elects to enroll in hospice, now what?
  • Determine which level of care you think this patient needs.
  • Notify your hospital’s discharge planning team and case manager so a referral can be placed.
• What treatments are typically covered  by hospice ?
  • Normally covered by hospice:
    • Treatments focused on symptom management to address pain, nausea, vomiting, agitation, anxiety, dyspnea, constipation, etc.
    • This can be medications, DME, medical supplies, therapy, counseling.
  • Not covered by hospice: disease directed treatments
  • Might be covered by hospice:
    • Artificial nutrition, IVF, antibiotics, transfusions, palliative procedures (radiation, paracentesis, thoracentesis).
    • This is usually a case by case basis and may end up being a time limited course.
• What medications to continue and discontinue?
  • Think through these questions:
    • 1) is the medication providing symptomatic benefit to the patient or will the medication maintain/improve quality of life?, 
    • 2) What is the harm on QOL if we continue the medication, and 
    • 3) What is my patient’s anticipated prognosis and their overall goals? 
  • Know that hospice will do their own review of the medications and work with the patient deprescribe overtime
•   Code status in hospice
  • DNR/DNI is not required for hospice by Medicare guidelines.
  • However, GIP facilities are often unable to run codes and these patients are often DNR/DNI or even DNH.
• Approaching the hospice patient coming back to the hospital
  • Be curious for their reason:
    • Change in philosophy of care
    • Hospice sent them for an abbreviated evaluation (ex. For eval for a fall/fracture)
    • Expedited symptom management
    • Misunderstanding of hospice care
• Hospice enrollment and re-enrollment is voluntary. 
  • Patients can elect to re-enroll on hospice services after hospitalization if their goals of care continue to align with hospice and the agency agrees the patient meets criteria.  

Transcript

Dr. Shreya Trivedi: Welcome back to Core IM. Today is part two of our hospice series. In our most recent episode, we had an opportunity to learn about the nuts and bolts of hospice care in America, who the key stakeholders are and who pays for it. In today’s episode, we are hoping to spend a little more time getting into the gray areas of transitioning to hospice care.

Dr. Mahathi Komaragiri: To help us navigate this discussion today, we are joined again by Dr. Harry Han. Harry is palliative care attending who works with inpatients teams on transitioning patients onto hospice services. Harry, we are so eager to get into part two of this episode with you. 

Dr. Harry Han: Thank you! I’m excited to contribute to this conversation and to help demystify this topic. Even after palliative care fellowship, I’m constantly learning new things about hospice. There are guidelines on the Medicare Hospice Benefit, but how hospice care is practically delivered is governed by the local hospice agencies and how they interpret the guidelines. 

Dr. Shreya Trivedi: Thats so hard! So what may be the standard of operations at one hospice agency may not be the case at another.

Dr. Mahathi Komaragiri: Yeah I think those interpretations are exactly where the confusion often lies.

Dr. Shreya Trivedi: Lets ground some of the teachings in some cases.

Dr. Mahathi Komaragiri: Let’s do it! I have a 72 y/o male with a history of metastatic squamous cell carcinoma of the larynx. He is status post surgical resection, chemotherapy and radiation. This has been complicated by chronic neck wound infections on suppressive oral antibiotics and tube feed dependency. The patient was admitted to the hospital with acute hypoxic respiratory failure. Imaging shows the spread of his underlying malignancy. He is now largely bed or chair bound and lift dependent. His oncologist feels that he would not benefit from any further chemotherapy, especially given how frail he is. After several goals of care discussions, the patient wants to transition to hospice. 

Dr. Shreya Trivedi: Alright, Harry, a lot going on with this person. But hospice sounds like it makes sense. It would be helpful to review what the immediate next steps are.  

Dr. Harry Han: The decision to elect hospice is a starting point in the discharge process. It shouldn’t be viewed as a “oh, they’re hospice, dispo done!” single checkbox, wipe hands clean. Hospice provides additional services, but you want to ask yourself–knowing the patient’s care needs, what is the appropriate setting for this patient to get hospice care? So, the immediate first steps are determine what is your sense of hospice level of care and location of hospice care.  

Dr. Shreya Trivedi: Okay for some spaced repetition from episode one, thats GIP level of care if they IV meds to control their symptoms and routine level of care which can take place at home or at a facility. Okay, so once you have a sense of their supports they need or what their home situation may be like, what comes next?

Dr. Harry Han: You should then ask your care coordination team, case manager, or whoever is in charge of that workflow to place a referral to the local hospice agency. The hospice agency will do their own evaluation for level of care and get back to you on whether the patient is eligible for hospice and what they think is the patient’s hospice level of care.

Dr. Shreya Trivedi: So we shouldn’t promise anything to the patients or family about what or where their care will be and say the hospice agency will give their input after their evaluation on what services the hospice agency can provide. 

Dr. Harry Han: Definitely don’t make any promises! You want to give anticipatory guidance that hospice agencies will do their own assessment and will get back to them about eligibility and what the agency can offer. One caveat is that like many patients we care for, clinical situations are dynamic, so you may also need to reassess whether the patient level of care changes over time. 

Dr. Mahathi Komaragiri: I agree. I mean hospice is really so much more fluid than I realized. So based on what you have shared, what would be the care environment that you feel our patient would be most appropriate for?

Dr. Harry Han: Assuming he has some family or caregiver help at home, we would aim to discharge this patient home with hospice support on routine level of care.

Dr. Mahathi Komaragiri: What if he didn’t have a family or caregiver at home? 

Dr. Harry Han: This is where things get tricky. One possibility is the family hires private aides at home out of pocket to supplement home caregiving. As we mentioned in the last episode, this could get costly quickly. Another possibility is to go to an extended care facility, such as a nursing facility (skilled, long-term care facilities, hospice) that provides routine level of care. The Medicare hospice benefit for routine level of care doesn’t pay for room and board at extended care facilities. So usually the patient shoulders the cost and pays out of pocket for the facility. A select number of patients have long-term care insurance that covers their room/board in these facilities, but many do not. So case manager can tell you more about their insurance plans and if they have long-term care insurance.

Dr. Shreya Trivedi: And what about those patients who cannot afford room/board or hire help?! What do we do then?

Dr. Harry Han: So we’re stuck in this limbo situation. In these cases, your care coordination teams may suggest or patients may opt for discharge to SNF or rehab without hospice support since room/board is more likely to be covered through the Medicare Skilled nursing benefit. Patients CANNOT use both the Medicare Hospice Benefit and Medicare SNF benefits at the same time, so since room/board more likely to covered with SNF benefit, many end up choosing that route.

Dr. Mahathi Komaragiri: Ugh it feels so complicated. 

Dr. Shreya Trivedi: I think what I am most curious to learn about here are some of the specifics in this patient’s care. For example, let’s add that our patient is currently on tube feeds, suppressive antibiotics and medications such as SSRIs and DAPT. I often find myself kind of stressed when I go back to EMR and think about what should I continue or discontinue? 

Dr. Harry Han: So, Medicare guidelines state the hospice agency is responsible for covering everything (medications, equipment, interventions) that is related to palliating and management of the symptoms of the terminal illness and diagnoses that are related to the prognosis. 

Dr. Shreya Trivedi: We talked about this last time, thats around $210/day if they are a routine level of care and $1100/day if they are GIP level of care. Do they give more specifics on how that money can be allotted or what treatments or interventions fall under symptom management for the terminal illness?

Dr. Harry Han: Yeah so unfortunately Medicare does not give specific interventions or medications, just that it must help palliate and manage symptoms. What gets covered depends on whether or not the agency agrees that medical intervention matches a reasonable hospice care plan. For one patient, one agency may say we can cover something whereas another agency will say no. Some private insurances do have carve outs that cover specific interventions that will be covered by their insurance and not the hospice. 

Dr. Mahathi Komaragiri: So recognizing these caveats and nuances, how do you think about what medications and interventions are covered on hospice? 

Dr. Harry Han: So, when I think about different medications or interventions on hospice, I group them into 4 buckets: (1) Normally covered on hospice, (2) Not covered on hospice, (3) It depends, and (4) completely unrelated to the hospice diagnosis. In the normally covered bucket, that includes everything related to pain management and other physical symptoms such as nausea/vomiting, agitation, anxiety, dyspnea, and constipation. PO lasix for example can help with symptoms. For the 4th completely unrelated 4th bucket, let’s say you have a patient with metastatic lung cancer, but has Type 1 Diabetes. Or they have longstanding hypothyroidism, all of which were longstanding even before met lung cancer. Because Type 1 DM and hypothyroidism is completely unrelated to cancer diagnosis, hospice can deem this med completely unrelated to terminal illness. For  completely unrelated meds, hospice documents for Medicare that these medications are not related to hospice diagnosis and the cost of these medications fall onto Medicare or private insurance, not the hospice. 

Dr. Shreya Trivedi: What about chemo or immunotherapy?

Dr. Harry Han: Things like disease-directed treatments, like oral chemo, immunotherapy, are generally not covered. Donepezil for advanced dementia, the expensive continuous pulmonary hypertension infusions such as ambrisentan or epoprostenol are generally not covered. 

Dr. Mahathi Komaragiri: Okay expensive things are out. What about falls into the it depends bucket?

Dr. Harry Han: The “it depends” categories include things like artificial nutrition (tube feeds), IV fluids, antibiotics, some medications that do not clearly fall into the physical symptom management I mentioned earlier. Usually for these “it depends,”interventions, they are considered on a case-by-case basis by the hospice agency. A lot of times, the agency will say no. But sometimes they agree to a time-limited course (i.e. continue for 1 week of antibiotics or 1 week of home inotropes, then stop) or even agree to cover indefinitely. For these “it depends” cases, I would consider talking with the hospice agency directly to discuss.

Dr. Mahathi Komaragiri: So in our patient’s case, he is dependent on tube feeds given his laryngeal cancer. If he is now going home on hospice, would tube feeds be continued and covered? 

Dr. Harry Han: This unfortunately varies with agencies. I have worked with agencies who said no tube feeds, some agencies where they would cover tube feeds, and others who agreed to a short time limited trial.  I’m really lucky to have local agencies that are open to considering tube feeds and “it depends” interventions, but I have also worked with agencies where the same “it depends” interventions are a non-starter. Again, talk with your local agency partners to determine their practice patterns. 

Dr. Mahathi Komaragiri: Ugh I hate that. I haven’t been in this situation but I’d hate to have to tell the family that the hospice that accepted the patient wont be covering tube feeds and then that makes families NOT want to do hospice.

Dr. Shreya Trivedi: Switching gears a bit, say I will have this amazing conversation about hospice, and then I go back to the EMR to change code status or comfort measures only and I don’t know what to do with everyday meds like their blood thinners or their seizure meds?

Dr. Harry Han: So I first ask myself, what medications fall under the generally not covered medications like chemotherapy or “it depends” buckets like antibiotics that hospice will not or may cover. For those two buckets, ensure those are stopped or set expectations with patient and family that this may or may not continue upon hospice enrollment and will be an ongoing discussion. After that, I approach stopping medications similar to how I do thoughtful de-prescribing in older adults. Things I ask myself are: 1) Is the medication providing symptomatic benefit to the patient or will the medication maintain/improve quality of life? 2) What is the harm on QOL if we continue the medication, and 3) What is my patient’s anticipated prognosis and their overall goals? That being said–a common misconception is when a patient goes onto hospice, they will be told to stop all of their medications upon enrollment, like for their heart disease or diabetes, and just take comfort-focused medications. In reality, a big part of what the hospice team does is work with patients and families on de-prescribing over time as patients’ illness evolves and their health declines over time. In addition, when someone signs onto hospice services, the hospice agency will review the case and come up with their own medication plan or “plan of care” that they then present to the family. Often, that first “plan of care” doesn’t make too many changes with every day meds. So, you don’t have to create the perfect medication list at discharge or stop all the medications. 

Dr. Shreya Trivedi: That makes sense Harry! And that gives me relief that there will be a second review on these meds after I look at it. What would you do with the patients blood thinners or seizure meds?

Dr. Harry Han: For PO medications like anticoagulation or anti seizure medications, these may actually help patients feel better or maintain QOL. Let’s take anticoagulation– lets say I have a patient where they just had a recent DVT or PE. Recent clots may cause distressing symptoms. Or perhaps I am caring for a patient who has end stage heart failure with a prognosis of weeks to months and they are doing relatively okay, but have AFib and has a LV thrombus, and the patient and family are concerned about stroke risk because if a stroke happens that would greatly impair the patient’s life. So in these cases, I would say it makes sense to continue anticoagulation and the hospice can re-evaluate periodically.  Alternatively, let’s say I have a patient who is not swallowing safely anymore or they’re falling a lot and I’m worried about bleeding–for them I might say I think it’s safer to stop the medication. 

Dr. Shreya Trivedi: I appreciate you going through those cases.

Dr. Harry Han: You also want to think about prognosis. If you think the patient has an anticipated prognosis of weeks or months, it makes sense to continue the SSRI for depression/anxiety or beta blocker if my patient feels like the BB treats uncomfortable palpitations. If the anticipated prognosis is hours to days, I’m not sure if it makes sense to continue SSRI. Finally, you want to consider the patient’s goals. Family is worried about the pill burden–cut down pills to only those that are most essential for in the moment symptoms and write in discharge summary for hospice agency that they should continue tapering specific meds that might cause withdrawals, such as SSRIs or gabapentinoids. Family want to do a celebration at home so they can say goodbye to family — you might continue most things and let patients and family know some of these may be stopped after d/c after talking with the hospice agency. It comes down to what the medication is doing, does it help my patient feel better in the anticipated prognosis, and does it align with their goals. Developing a working relationship with the hospice agency you consistently refer to can help you learn their practice patterns as you develop your own counseling spiel. 

Dr. Shreya Trivedi: Ok, to summarize: there are 4 buckets for medications: normally covered, not normally covered, and it depends, and meds completely unrelated to the hospice diagnosis. How we think about what to continue or stop depends on whether it’s helping the patient feel better or provide benefit within the patient’s prognosis and overall goals. And we don’t have to get it right the first time. The hospice team will also do their own rundown too and work on de-prescribing over time themselves. Let’s switch gears to another case!

Case 2

Dr. Mahathi Komaragiri: We have a 77 y/o female with past medical history of hepatitis C complicated by liver cirrhosis, congestive heart failure and ESRD on HD. Over the past year, the patient has been recurrently hospitalized for encephalopathy, GI bleeds requiring multiple transfusions and symptomatic ascites requiring monthly paracentesis. She was evaluated for TIPS and not considered a candidate due to her heart failure.. Given her overall decline, the patient has opted to transition to hospice level care but would like to consider continuing receiving blood transfusions and paracenteses if she requires them. Harry, how do we navigate discussions with patients regarding procedures like transfusions as well as procedures for symptom relief such as paracentesis with hospice?

Dr. Harry Han: Many specific procedures fall under the “it depends” category. Transfusions can be considered on a case-by-case basis, but generally routine transfusions for Hgb <7 are not done. This restriction has historically limited hospice enrollment for patients with hematologic malignancies. There are some initiatives and pilots in the pipeline now at specific hospice agencies looking at the benefit/cost of covering transfusions on a variety of outcomes. 

Dr. Shreya Trivedi: What about paracentesis, thoras and even palliative radiation for bony mets causing pain?

Dr. Harry Han: For procedures like palliative XRT for bone mets, paracentesis or thoracenteses, it again depends on the agency. Many arrange for drainage or XRT because these procedures really do help patients live better by treating pain, discomfort. Hospices also may recommend to place an indwelling pleural or abdominal catheter for ease of drainage in home setting and can contract with different hospitals or providers on setting up the placement. For many of these interventions, hospices will often ask patients to do this as an outpatient, so patients will need to be functional enough to go to these outpatient procedures. Things like routine labs are generally not covered in hospice because at this point, the focus is really on symptoms and how patients are physically doing rather than a number. 

Dr. Shreya Trivedi: This is patient is also on dialysis? What do we do with all our ESRD patients on dialysis?

Dr. Harry Han: Dialysis is generally not covered as dialysis impacts prognosis and thus timing of discontinuation should be discussed. There are specific patients who can get hospice and HD, such as Veterans receiving care at VAs or children <21 who are covered under “concurrent care” hospice models provided to those patient populations. 

Dr. Shreya Trivedi: What is concurrent care? They are receiving hospice care and something else?

Dr. Harry Han: Concurrent Care is a model where patients with prognosis of <6 month can enroll on hospice, but also continue to receive life sustaining treatments such as transfusions, HD, or cancer-directed treatments. This care model tries to change from the current “hospice cliff” where it feels like patients have to choose between disease-focused treatments vs comfort-focused care in a binary, sudden fashion to a more softer landing, allowing the hospice team to get to know and care for patients/families without the abrupt loss of disease directed treatments and gradually tapering down disease-targeted interventions over time as the disease and function changes. There are ongoing studies looking at the feasibility, cost, and practicalities of concurrent care models in the VA and pilot studies in patients with regular private insurances, in integrated health systems, or specific Medicare plans. 

Dr. Mahathi Komaragiri: That’s fascinating actually because oftentimes I find that “hospice cliff” is what causes patient hesitation with enrolling in hospice. I also love that it allows both patients and families to slowly minimize disease-targeted interventions and prepare themselves for end of life care in a more easy to digest timeframe rather than all of a sudden.

Dr. Shreya Trivedi: Another rather abrupt decision that we help patients navigate prior to discharge to hospice is code status. Most often when filling out the provider order for life sustaining treatment, patients and families will elect for a DNR/DNI status. Additionally, they will also indicate preference not to transfer to the hospital (except for comfort). However, we will sometimes see a patient who has just enrolled in hospice, opt for a full code status with wishes to be transferred back to the hospital for any acute needs. Harry, can you help us understand the nuances of code status in hospice care?

Dr. Harry Han: So technically, there is nothing in the Medicare guidelines that state patients have to be DNR in order to enroll on hospice. Hospice agencies sometimes work with patients/families over time to readdress code status and other elements of goals of care at EOL. Now, some agencies may push back and say does this patient who is full code–is patient/family truly aligned with a comfort-focused hospice care plan? You might also take a pause and check in with patients and families: what is their understanding and expectation of hospice care? Do they generally agree with the philosophy? If there is some disconnect, then maybe the patient and family are not ready to enroll on hospice. That’s okay–sometimes families take time to think about hospice. If there are questions or uncertainty, you can speak with the hospice agency directly or reach out to  a palliative care team if you have access to one at your institution. I’ll emphasize enrollment to hospice is voluntary. If they’re not ready, we cannot force patients to enroll on hospice. Patients may also elect to come off of hospice benefit to receive other medical treatments if they desire and patients can always elect to go back to the hospital or ED for care if they choose. In these scenarios, the hospice team likely would speak to the patient and family about whether continuing hospice continues make sense for them. Now practically, code status can sometimes preclude admission to a hospice GIP facility because they may not be capable in terms of equipment or staff to run a code. In addition, if there are concerns in the home setting and the patient is not DNR/DNI or DNH, the hospice team may recommend going to the ED for evaluation. 

Dr. Shreya Trivedi: That’s helpful and maybe we can think about the person who enrolled in the hospice but comes back to the hospital. I find that sometimes they aren’t entirely clear why they came to the hospital. Sometimes id be wait a minute, did they not understand what hospice meant and they shouldn’t be coming back to the hospital. But maybe I have some blindspots there.

Dr. Harry Han: There are a lot of reasons why patients enrolled in hospice come back to the hospital. One possibility is that the patient/family changed their view about the philosophy of medical care. For example, maybe after some thinking they want to pursue disease-targeted treatments or specific interventions not offered on hospice, or maybe they had a misunderstanding of what hospice actually does and now realize that hospice isn’t what they were hoping for. This is a pretty common thought that runs through us clinician’s minds because why would they come back to the hospital if they are on hospice–shouldn’t hospice be able to manage these things? 

Dr. Shreya Trivedi: Yeah, I have had patients come back because they wanted more care than hospice can offer and that makes sense. 

Dr. Harry Han: But patient’s and families changing their minds on medical care is not the only reason. Remember,  hospices do have limitations and sometimes the patient/family may think home is not the best place or needs faster connection to resources than the hospice is able to arrange. I cared for a patient who was on home hospice who became acutely dyspneic in the middle of the night. The family called the hospice 24/7 access line, who gave recommendations to administer opioids for dyspnea and the agency would send someone out to see the patient. But the patient still looked distressed after a few doses of opioids, the family panicked, and called an ambulance to see if the ED could help the patient get more comfortable. While hospices counsel patients and families to call them before calling 911, in this case, the family forgot to call the agency to update them, so when the patient showed up in the ED, there was a lot of confusion about why the patient was there and what was going on. 

Dr. Shreya Trivedi: And then are there situations where the hospice agency may recommend the patient go to the hospital?

Dr. Harry Han: Hospices may even recommend going to the hospital for evaluation. For example, folks on hospice fall or are passengers in car accidents, hospice suggests that they go into hospital for a limited evaluation for symptom reasons (i.e. do they have a fracture that limits QOL?) and the hospice will contact the ED or hospital directly to coordinate care. Or the hospice doesn’t have a GIP facility or contracted beds and thus need to send someone into the hospital for symptom management. 

Dr. Shreya Trivedi: Yeah, contracted bed, I cant even imagine. My teaching point is instead of thinking why the patient is here, is to to be more curious when a patient comes into the ED who was enrolled in hospice. How do think about that? 

Dr. Harry Han: So when you’re evaluating a patient in the ED who is enrolled in hospice, ask the patient or family what prompted them to come to the hospital? Did they reach out to the hospice before they came? Briefly explore how things have been in hospice for the patient/family.  Don’t immediately assume they want to change their philosophy of care just because they showed up to the hospital. Once you assess the situation, reach out to the hospice agency–ask the patient/family to give you the 24/7 access line so you can speak with the hospice team — maybe the patient and family has been wrestling with hospice enrollment and a change in care plan is appropriate. Or maybe the hospice team was trying to get symptoms more rapidly under control and actually developed recommendations for the ED team, but didn’t know which ED the patient went to. If there still is uncertainty after your initial discussion and your institution has a palliative care team, it may be helpful to get the PC team involved. It’s important to contact the hospice agency asap  when patient shows up to ED or hospital because if the hospice team didn’t know about an ED visit or hospital admission while the patient was still enrolled on hospice services with their agency, there is a chance the patient could be directly billed for the medical care they received if the hospice didn’t agree to that particular workup or treatment 

Dr. Mahathi Komaragiri: Can the patient then re-enroll in hospice? What would prevent them from both enrolling, suspending and re-enrolling in hospice every time they have an acute care need?

Dr. Harry Han: Yes, Patients can re-enroll on hospice if they voluntarily dis-enroll from services after getting re-hospitalized, though there is increased scrutiny by CMS. Readmission to the hospital should be another point of pause for clinicians. Explore with patients and families whether continuing to be enrolled on hospice makes the most sense. Does it fit with their view of the type of care they are hoping to pursue at this time? If yes, ask the hospice agency to re-evaluate. If not, then perhaps hospice isn’t the best option for this patient and family right now.

Dr. Shreya Trivedi: One comment I get from families is “my friend’s mother went on hospice and died two days later” or “the hospice started the morphine and the patient quickly became unresponsive.” Do you have suggestions for responding to these comments?

Dr. Harry Han: Sadly yes, I often hear these comments too. For the first scenario, I often tell patients and families that unfortunately we as clinicians often wait too long to start hospice services and the patient is actively dying, so their time on hospice is really short. Our hope is to start these services earlier so patients can get more time at home with their loved ones and get some additional supports in the home settings rather than waiting until we’re at death’s door. For the second comment, I often tell patients and families my hope is that the patient is awake, interactive with patients and families, and comfortable and not suffering. I then share that sometimes this is easy to accomplish, but other times it’s harder to balance wakefulness and interactiveness with symptoms over time as the patient’s clinical condition evolves. I share that the hospice agency will work with patients and families on their goals as together the patient/family and hospice make decisions about how best to manage symptoms. 

Dr. Shreya Trivedi: Expectation setting. Harry, thank you so much for spending this time with us and helping us understand how to navigate these sensitive end of life scenarios. I think we all have a lot we can do to continue to improve how we care for patients during such a vulnerable time. On that note, do you have any of your own reflections on the future of hospice care? What is coming down the pipeline?

Dr. Harry Han: The Medicare Hospice Benefit was enacted in 1982, so the regulations are over 40 years old. Since then, so many things have changed. people are living longer, treatments have evolved, some life sustaining interventions are done outside of a hospital setting. As we heard last episode, 40 years ago, most patients enrolled in hospice had end-stage cancer. Now, there is more heterogeneity in serious illnesses with different illness trajectories—patients living with different serious illnesses may have different physical and functional needs at EOL, but does our current hospice system support those various needs? Family structures have evolved with the advent of cell phones, internet, FaceTime. It’s not uncommon now to see an 80 year old being the sole caregiver for their 82 year old spouse on home hospice with a family member living across the country. Funding structures for caregiving haven’t kept up. Finally, the rise of healthcare corporatization, hospital system mergers, for-profits, and private equity. They have entered not only healthcare, but nursing homes and hospice markets, and may impact care delivery. So, what was implemented and designed 40 years ago may or may not suit the needs of patients in 21st century healthcare. The good news is that there is growing recognition about the benefits and challenges of the current Medicare Hospice Benefit system, and pilots looking at alternative hospice care models. For example, the recent Medicare Care Choices model, a care model that is similar to concurrent care, was recently piloted with 82 hospices. This gives me hope that hospice care will evolve to meet the patients and caregivers.

Dr. Shreya Trivedi: Yes, so much realness there. I really do hope it gets better. And there is so much to process at end of life. And if hospice agencies can be more inclusive of our patients needs, there would be a lot of good there. Harry, you gave us a great deal to reflect on today. 

Dr. Mahathi Komaragiri: Absolutely. Honestly since we’ve worked on this episode, I’ve learned so much it’s changed i’ve practiced and we all hope that you guys are able to use some of this as well. We  will leave you with a clip from a beautiful discussion with Bryanna Tobin from episode 1. I still think about this quote since our interview and it makes me reflect on the “why” for hospice care and how it should remain an ongoing topic of discussion.

Bryanna Tobin: A centering on the quality of life that’s remaining for the individual. Because 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 with 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.

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.