Ep 34 Comfort Care: Palliative and Hospice

In 2020 my dad was 94 years old, and despite his dementia, he was in pretty good physical health, and was one of those happy dementia patients. I would ask, How you doing today, Dad, and he'd have a big smile on his face and say, I don't know, how do I look? I'd reply, you look great, and then he'd say, then I am enthusiastically. Of course, we had that conversation three or four times a day, but that was okay. He still had a good quality of life, because he was still engaging with people. He loved to talk, and he could go on short walks outside or get a ride in his wheelchair, and he loved all of that. Then, in September of that year, he had a stroke at home that left him minimally communicative, and it was evident within a day or two that he was in his last weeks, or maybe days. Even though he already had a full-time caregiver at home, my family decided to call a local hospice service to come in and help us manage his comfort and overall needs, and they did just that. They helped coordinate delivery of some equipment that we needed, and they also left us with pain medication, because he seemed pretty uncomfortable. In the end, he was at home, surrounded by all of his family, wife, children, and grandchildren, all singing his favorite song, oddly, oh Tanenbaum, in German, and he passed away pretty peacefully. And immediately the hospice team came back and took care of everything that needed to happen next, coordinating with a funeral home, having him picked up, getting equipment returned, and they even checked in on my mom a few times over the next couple of months to make sure that she had support. I've thought a lot since then about how things would have gone for him and for us if hospice had not been involved. Probably he still would have died at home, but in a lot of pain that wasn't treated well, or maybe something too scary would have happened, and he would have ended up in the hospital, and would have died there, which was not his stated wish. The family definitely would have had to engage in a lot more administrative stuff while we were mourning in the days after his passing. When I mention hospice care to people, or its sister palliative care, I get a lot of blank looks, or sometimes scared looks. Most people don't understand the difference between the two, and often conflate these types of care with the idea of giving up on themselves or on their loved one, which really isn't what these are about. So, today I'd like to offer some clarity on

palliative care and hospice, because for many people, these can greatly improve their quality of life, and that idea is worthy of our time today. I'll walk through what each of these actually looks like in a real person's life, what it means for the patient, what it means for the people taking care of that patient, how it fits together with the rest of the healthcare system, and of course, how insurance and Medicare handle it all, and then I'll close with some practical tips on how you can actually get started, whether you're the patient or the family or caregiver. Let's start with palliative care, because it's the bigger, broader category, and it's the one that I think is less understood. Palliative care is a medical specialty, just like cardiology or dermatology, that focuses on improving the quality of life for someone with a serious illness. It applies at any age and at any stage of illness. It's not about the prognosis, it's not about how much time someone has left. It instead focuses on symptom relief, pain control, the emotional toll of being sick, and it's about helping a person and their family understand what's happening and how to make decisions that actually reflect what they want. You might think that this sounds basic, like, isn't this what the doctors and hospital involved should be doing anyway? The answer is yes and no. Some hospitals and doctors actually do a lot of this stuff as part of their general care approach to a very sick patient, but most don't, and some of the things that palliative care entails are a bit outside the realm of a standard doctor's visit. And let's be honest, in today's healthcare system, where everyone is overworked and short on time. This kind of stuff related to quality of life of a patient often falls to the side. The way it works is that it runs simultaneously with and in parallel with the care that you receive for the illness that you have. For example, you can be receiving palliative care on the very same day that you're receiving chemotherapy, you can be getting palliative care while you're also getting worked up for a heart transplant. You can start palliative care the day you're diagnosed with a serious illness and continue it for years, all while your other specialist doctor is still actively trying to cure your disease. A palliative care is not a replacement for that treatment. It runs alongside of it. Hospice is also a palliative type approach, meaning it's also about comfort and symptom relief, but it has a restriction. Hospice is for people who have a terminal illness with a prognosis of six months or less to live if the disease runs its expected course, and this is the key point that distinguishes it from palliative care. The patient has decided to stop pursuing treatment for that terminal illness and instead wants to focus entirely on comfort and quality of life. That's the difference. It's not really about how sick someone is. Plenty of palliative care patients are extremely sick. The difference is about the goal of care. Are we still trying to treat or slow down the disease while also managing symptoms? That's palliative care. Or have we made a decision to stop treating the disease and focus only on comfort? That's hospice. In the US. The most common diagnoses that people have who are using these types of healthcare are severe heart failure, chronic obstructive pulmonary disease, dementia, or other neurovascular diseases like Parkinson's and various cancers. Let's make this concrete. I want to describe a few real-life scenarios for each type of care, because I think hearing these will help clarify the differences and when each one might be appropriate. I'll review a few palliative care examples first. Scenario one: a 58 year old woman is diagnosed with stage three colon cancer. She's about to start an aggressive chemotherapy regimen with a real chance of cure. Symptoms she will probably encounter include nausea, numbness, and tingling in her limbs, fatigue, weakness, hair loss, and probably a lot of anxiety. All of these symptoms are fair game for a palliative care team to come in and help manage, starting on day one, she's absolutely still pursuing curative treatment through the chemotherapy. Palliative care here is about helping her tolerate that treatment and stay engaged with her life while she's going through it. Scenario two: a man in his 70s has advanced heart failure. He's not facing six months or less. His cardiologist genuinely doesn't know how long he has. It could be years, but he's having repeated hospital admissions for shortness of breath, leg swelling, and fatigue. A palliative care team can come alongside his cardiology care to help manage those symptoms more aggressively, have honest conversations with him and his loved ones about what matters most to him, and hopefully help him avoid some of those hospital trips. He's not dying imminently, he just has a serious, burdensome chronic illness, and palliative care is appropriate for exactly that. Scenario three: a teenager is diagnosed with a chronic autoimmune condition that isn't terminal, but causes them significant daily chronic pain. Palliative care teams increasingly work with pediatric and young adult patients on long-term symptom and pain management, completely separate from any end of life context. In all of these examples, the patient has a serious illness, but is still committed to getting treatments that could cure it or keep it at bay. They just want to be as comfortable and pain free as possible while doing that and need some help figuring it all out along the way. That's palliative care. Now, let's cover some hospice examples. Scenario one: an 80 year old man has metastatic pancreatic cancer. He and his oncologist have had the conversation, and further chemotherapy is not going to meaningfully extend his life or improve how he feels. It would likely just add more uncomfortable side effects without much benefit. He decides, after talking it over with his family to stop treatment and focus on comfort. That's a hospice referral scenario. Two, a woman with advanced dementia is no longer eating, has had several aspiration pneumonias. That's where food gets into the lungs and then causes an infection like pneumonia, and her family, who have power of attorney for health care for her, have decided, after a long, difficult conversation with her physician, that further hospital transfers and aggressive interventions aren't in line with what she would have wanted, as she made clear in her living will. Hospice can come into her nursing home, or assisted living home, or her home, if that's where she is, and manage her comfort there instead. Scenario three: someone with end-stage kidney disease who has decided against further dialysis. Their physician believes and certifies that without further dialysis, their life expectancy is six months away. Us, that's a hospice referral. What I want you to notice across all of these is that the hospice scenarios all involve an explicit decision to stop pursuing cure of the underlying disease. People come to that decision for different reasons, perhaps their doctor tells them that the treatment will no longer cure them, or that the risks of treatment far outweigh the limited benefit they might get, or perhaps the treatment is painful and makes them very sick and won't cure them anyway, or perhaps they simply don't want to go through difficult and painful treatments. That decision that's made alongside a physician, that's the difference between hospice and palliative care, and a patient can move from one to the other. The last scenario I'll give you is of a 45 year old woman with stage four colon cancer. She's pursuing aggressive treatment, and this works for several years. During that time, she has palliative care on board to help with the side effects of the treatment to minimize her pain and to help her with other resources, but soon she finds out that her cancer has spread more and is now metastatic. The doctors tell her that the treatments will no longer extend her life. She makes the decision to stop the treatments and asks the palliative care team to help her transfer into the hospice program. There, the hospice team does their best to ensure her comfort while she focuses on quality time with her family. Let's talk about what this actually feels like and looks like day to day for a patient in palliative care. The experience is usually additive, you keep your existing doctors, you keep your treatment plan, if you have one. What gets added is another layer of support, a team, often including a physician, a nurse practitioner, sometimes a social worker, or a chaplain, whose entire job is to ask you questions that your specialist doctor may not have time to ask in a 15 minute visit questions like how is your pain really on a day to day basis, how are you sleeping at night, how is your nutrition going, what does a good day look like for you now, how are you and your family dealing with this together, are you able to talk about it, what's your most important goal in all of this? Palliative care teams spend more time with patients and will schedule regular check-ins, either in person or virtually. The time is spent on you as a whole person, not just on the disease you have and how to approach it. And again, as I mentioned earlier, some clinics and hospitals are set up where the primary medical team actually gives attention to a lot of these topics, but most don't to the degree that a palliative care team would. For a patient enrolling in hospice, the experience is similar, but it starts from a different place. Again, the question stops being, How do we fight this, and becomes how do we make the time you have as good as it can be? For some patients, this is a genuine relief. A weight is off their shoulders, because the exhausting cycle of treatments and side effects and tests and scans ends. For other patients, it can feel like a loss or like giving up, both of those reactions are common, and a good hospice team makes room for both. Practically, for the patient, hospice usually means that you're seen regularly by a nurse, you have a clear plan for managing pain and other symptoms, you have a 24/7 phone line for crises, so you're not defaulting to calling 911 or going to the ER, and the whole orientation of your care shifts towards comfort, dignity, and being where you want to be, which for the large majority of hospice patients is at home. As I mentioned earlier, these types of care aren't just for the patient, some of the services are for family members in palliative care. Family members often become, sometimes for the first time, a recognized part of the care team in a formal sense. A palliative social worker might help a spouse figure out how to talk to young kids about a parent's diagnosis, or they might help the patient talk to their spouse about what's happening. A palliative chaplain might sit with an adult child who's angry or guilty, or both. And there's also a practical caregiving education piece: how to help someone get in and out of bed safely, how to manage a complicated medication schedule, how to recognize when a symptom needs an urgent call versus when it can wait. With hospice, the family role expands significantly, especially for home hospice. Hospice is built on an assumption that there is a primary caregiver who is present in the home and willing to take on a fair amount of hand. On care with the hospice team supporting them rather than replacing them. That person is often a spouse or an adult child, sometimes a close friend, or it could be a privately hired caregiver. This is an important thing to understand up front, because I've talked to families who were surprised by it. Hospice in your home does not mean someone's there 24 hours a day with you. A nurse usually visits regularly, often a few times a week, more if needed. But in between those visits, the family or hired caregiver is typically the one administering the medications, repositioning the patient, managing day to day comfort, but all according to a plan made by the hospice team, if a patient is in an assisted living facility or a nursing home, a hospice team will come in and work alongside that caregiving team. This is also where bereavement support comes in. Hospice includes grief and spiritual counseling, not just for the patient, but for the family, and that support often continues after the patient has died. As I mentioned, with my mom, most hospices offer bereavement services to the family for about a year following the death. I'd also say, from a clinical and a personal standpoint, caregiver burnout is real, and it's one of the most undertreated conditions in this whole picture. Both palliative and hospice teams actually build in respite options, those are short-term inpatient stays for the patient, specifically so that a caregiver can get a break and reset, and that's worth knowing about before you're burning out, not after. Let's move on to logistics, because this can be a little bit confusing. How do these types of healthcare fit in with the home health nurse who's already coming, or the physical therapist, or the private aid the family already hired for palliative care? The integration is usually straightforward, because palliative care is designed to coordinate with everything else. Your palliative care team talks to your oncologist. They can refer you to home health nursing if you need wound care or IV medications at home. They can refer you to a physical therapy or occupational therapy if you're losing strength or need help making your home ready to meet your new needs. If you already have a private caregiver or a home health aide, the palliative team simply becomes one more set of eyes and one more layer of symptom management. They don't take everything over. On the other hand, when you elect hospice, the hospice agency becomes the coordinating hub for everything related to your terminal diagnosis. That means the hospice's own interdisciplinary team, nurses, home health aides, social workers, and chaplains provide the hands-on clinical care related to your diagnosis. Hospice does include coverage for physical therapy, occupational therapy, and speech language therapy when those services help with comfort and function, but they're delivered through the hospice's own team or its contracted providers, not through whatever outside home health agency you might have used before. This is good and bad. I think it's good to have someone else organizing and coordinating everything, but if it means giving up a physical therapist you've been working with for years, that's not really so great. If a family already has a private caregiver, someone paid out of pocket to help with things like bathing, or dressing, or meal prep, or companionship, that caregiver can and probably should keep coming. Hospice doesn't replace them. What hospice adds is the clinical layer on top, the nurse who manages the medication plan, who's on call for symptom relief, and who might train that private caregiver on what to watch for. Okay, let's talk about insurance and coverage of these services. Hospice care is covered pretty seamlessly under Medicare Part A, that's the hospital insurance piece almost everyone has, often without a separate premium to qualify, a patient needs to be enrolled in Medicare Part A, and has to have two physicians certify a terminal diagnosis with a prognosis of six months or less, and then the patient has to formally elect the hospice benefit, which is the process of stating clearly that you are choosing comfort-focused care over continued treatment aimed at curing your specific terminal illness. Once that's in place, that benefit covers the entire hospice care team that I've mentioned, the home health aides, all medications related to managing the symptoms of the terminal illness, medical equipment, like hospital beds, wheelchairs, oxygen, medical supplies, short-term inpatient care, if symptoms become a crisis and can't be managed at home, respite care to give a caregiver a break, and grief and bereavement counseling for the family, both before and after death, out of pocket costs. Under traditional Medicare hospice, are minimal. There can be a small copay, generally up to about five bucks, for outpatient prescription drugs related to symptom control, and there's a modest capped coinsurance if someone needs a short inpatient respite stay. That's close to the full extent of what patients typically pay. And a quick side note, being in hospice does not mean that you aren't allowed to get care for problems other than that main illness. For example, if a hospice patient breaks a wrist or has an unrelated infection, that can still be treated regularly outside of the hospice benefit. What the hospice benefit does not cover is room and board. If you're living anywhere that isn't an inpatient hospice facility that could be your home, a nursing home, or an assisted living facility. Medicare hospice benefit pays for the medical care you receive, but not things like your rent or your mortgage or your groceries, and very importantly, it does not cover any treatment intended to cure the terminal illness, because electing hospice means choosing not to pursue that. For example, if you elect hospice for your terminal cancer, Medicare will no longer cover chemotherapy, because that's aimed at curing the illness. If a patient's at home and worried about the cost of round-the-clock private caregiving, that's really an important gap to plan for, and it's worth asking the hospice's own social worker about local resources, because most hospices have someone whose job is exactly that. One more detail is that hospice coverage isn't capped at six months. In reality, if a patient lives longer than expected, the hospice physician can recertify that they're still terminally ill, and coverage continues. People, though, sometimes graduate from hospice if their condition stabilizes or improves. That's allowed. It's not a one-way street, and then they can re-elect it again later if needed. Palliative care works a little differently with Medicare. There isn't one single palliative care benefit the way there is for hospice. Instead, palliative care services get billed under the regular parts of Medicare, depending on where and how they're delivered. If you see a palliative care team while you're in the hospital, that's covered under Medicare Part A as part of your inpatient hospital stay. If you're receiving palliative care as an outpatient, then things like a clinic visit with a palliative doc, a home visit, counseling, and some durable medical equipment are generally billed under Medicare Part B, the same way any other doctor's visit or outpatient service would be. You're still responsible for your monthly Part B premium, your annual deductible, and typically 20% coinsurance on covered services, unless you have a Medigap policy or other supplemental coverage that picks up that difference for Medicare Advantage, also called Medicare Part C. Those plans are run by private insurers, but are required to cover at least everything that original Medicare covers, including both hospice-related services and palliative care services delivered the way I just described, for people under 65 who wouldn't be on Medicare, or for anyone with private insurance or an employer plan. Most private insurers and HMOs do include hospice and palliative care benefits modeled closely on the Medicare structure, but with variation in co-pays and network requirements. Medicaid also covers hospice in every state with rules very similar to Medicare's terminal prognosis, election of benefit statement, waiving curative treatment for that specific condition. If there's one takeaway from this whole financial section, it's this hospice has clean, well-defined, almost universal coverage with very low out-of-pocket cost. Palliative care coverage exists, but it's billed more like regular medical care, which means it's worth a phone call to your specific insurer or Medicare Advantage plan to understand your deductible and coinsurance before you assume that it's free or covered. Let's bring this all the way down to the practical and talk about how to get started. I'll describe a pathway forward, whether you're the patient or a family member or caregiver. If you are a patient and you think palliative care might help you. The simplest first step is to ask your existing doctor, that could be your oncologist, your cardiologist, or other specialist, or your primary care doctor, for a palliative care referral or consult. You don't need to have a terminal illness, you don't need anyone's permission beyond your own doctor's referral. Many hospitals have an inpatient palliative consult team, and most major health systems now have outpatient palliative clinics as well. If your doctor seems unfamiliar with what to do with that request, you can also search directly. There are searchable provider directories through organizations. Organizations like the National Hospice and Palliative Care Organization, or through the organization called Get Palliative Care, a public-facing site run by the Center to Advance Palliative Care, and you can look up palliative programs near you by zip code. I'll drop those links in the show notes. If you're a caregiver advocating for someone else to get palliative care, the same path applies. Raise it directly with the treating physician. A good way to phrase it, if you're not sure how to ask, might be, "Hey, I'd like to ask about an additional layer of support for symptom management and quality of life. Could we get a palliative care consult? And now on to hospice. If you're a patient considering hospice, this conversation almost always starts with your treating physician, because hospice eligibility requires that physician's certification. If you're already feeling like further treatment isn't worth the toll it's taking, that's a completely legitimate thing to raise directly with your doctor. You can say plainly, I want to talk about what hospice might look like for me. Your doctor will talk through a prognosis with you, and if you both agree it's appropriate, they'll provide the certification, and you'll be connected with the hospice agency to begin what's usually a fairly quick intake process, often within just a day or two, once the decision is made. If you're a caregiver and you think it's time to raise hospice for someone you love, this is one of the hardest conversations a family member can initiate. So, I want to say a couple of things here. First, you are allowed to ask. Raising the idea of hospice is not the same as giving up on someone, and it doesn't have to come from you alone. You can ask the treating physician directly, "Do you think it's time we talk about hospice? and let them help guide that conversation with you and the patient together. Second, you can call a hospice agency directly yourself to ask questions, and even start an evaluation before there's a formal physician referral in place. Most hospice intake teams are used to fielding calls from worried family members, and they can walk you through next steps, including helping to get in touch with the physician for certification for either of these hospice paths, here's what the actual logistics look like once you've made contact. An intake nurse or coordinator does an assessment, usually within a day or two of that first call. For hospice, two physicians sign off on the terminal prognosis. You then sign an election statement for hospice, that's the formal document indicating you're choosing comfort-focused care. A care plan gets built around the patient's goals, medications get reviewed and adjusted, equipment gets ordered, and typically delivered to the home or stay facility within a day or two, and the patient is assigned a core team, usually a nurse, social worker, home health aide, and a chaplain, if the family wants one, with a physician overseeing the plan. So, just to recap, with all of this, palliative and hospice care are alike in that they are both forms of comfort-focused care. Palliative care is sort of a broad umbrella available at any stage of any serious illness alongside curative treatment with no six month clock attached. Hospice is the specific program kind of underneath that umbrella built for someone with a terminal illness when the goal has shifted fully to comfort, neither one is really about giving up. Both are about making sure that the time someone has, whether that's years or months or weeks, is supported by people whose entire job is paying attention to what that person actually needs medically, emotionally, and for the people who love them. If you take one thing away from this episode, I hope it's this: you don't have to wait for a crisis to ask about these types of care. You can ask your doctor about palliative care the week of a new diagnosis. You can ask about hospice the moment treatment starts to feel like it's taking more than it's giving, asking early doesn't mean you're committing to anything, and it doesn't speed anything up that you don't want sped up. It just means you'll have support in place before you desperately need it. Thanks for listening,

you.