- Thank you so much. Thank you so much, Jerome and Neelam. Okay, I will try to begin. Hello everyone, thank you for joining us today for today's webinar on palliative and Hospice Care. My name is Ryan McGraw and I am the Healthcare and Home and Community Based Services Community Organizer at Access Living. My pronouns are he, him, his, and my visual description is that I have on a tan sweatshirt, I have dark hair and am a short, white male. Access Living is a center for independent living that ignites disability power and pride, provides critical services and breaks down systematic barriers to create a stronger, more inclusive society. This is the first of two webinars Access Living will be hosting on enhancing the quality of life near the end of life. Our second webinar will be on the dangers of physician-assisted suicide and will be held sometime in March or early April. We will let you know the exact date once it is finalized. Before we get started wit our discussion today, I would like to go over some important accessibility guidelines for today's webinar. The ASL interpreter, Reba Pope, will be pinned throughout the webinar. If you need access to Spanish interpretation for the webinar, please call 930-4000, that, again, is 267-930-4000, the participant code is 742185485, that, again is 742185485. May I please ask the Spanish interpreter to repeat the number for anyone who needs it? Thank you very much. You can access captioning by clicking the CC icon at the bottom of your toolbar, of the Zoom toolbar. If you have trouble accessing it, please, please type in the chat and Jerome will help you. We will have a short Q&A session after our discussion today, if you have a question or comment, you can use the Q&A option on the Zoom toolbar and type your question into that. If you have a logistical issue during the webinar, please use the chat option and someone will get back to you. Now, I would like to turn it over to my colleague, Neelam Dhadankar. - Thank you, Ryan, oh, there you go! Thank you, Ryan, hello everybody. My name is Neelam Dhadankar and I am the HCBS/Healthcare Policy Analyst at Access Living. My pronouns are she and hers, and my visual description is that I have long, dark hair, black hair, I am in a wheelchair. I have a black top on with pink stripes and a tie. Now moving on, there has been plenty of discussion about passing the physician assisted suicide bill in Illinois targeting people with disabilities. However, we don't hear much about other options such as hospice care or palliative care. People with disabilities and other stakeholders need to know that they have the choice of hospice and palliative care when faced with a serious illness, physical or emotional pain, and many other health challenges. They need to know that their needs and medical concerns can be managed by other means, such as hospice and palliative care. Unfortunately, there are many misconceptions about this type of care and awareness and education are needed to dispel the many myths people hold about this type of care. Now, I would like to introduce our guest speakers for today's webinar, Sarah Dado and Maureen Burns from the HAP Foundation. The HAP Foundation is a nonprofit leader with a refined focus to elevate access to and increase understanding of serious illness and hospice and palliative care through community and clinical education, workforce development, research and advocacy. Maureen Burns is a community health worker and research liaison with the HEP Foundation. Maureen works in Rogers Park and surrounding communities providing free and culturally affirming health education and linking patients and loved ones to resources within their community. She has over 15 years of experience working in healthcare and Bachelor of Arts degree in Community Health, Culture and Aging. Maureen is currently a student at Northeastern Illinois University, pursuing her Master of Public Health degree. Maureen identifies herself as deaf cochlear implant user, and is a proud disabled leader. Next we have Sarah Dado, who is the immediate past President of the Illinois Hospice and Palliative Care Organization and past Chair of the Government Affairs Committee, which she led the advocacy team in the passage of several key pieces of legislation to support improvements to quality and access to end of life care for all ages across the state. She has been the three-time State of Illinois delegate leader in Washington DC, leading teams of advocates both in Springfield and on Capitol Hill. Sarah is a nationally recognized speaker and expert on a variety of topics including quality improvements to end of life care, how to reduce barriers to conversations on goals of care and advanced care planning. Sarah has held several key board and committee positions, including the Illinois Hospice and Palliative National Hospice and Palliative Care Organization's Steering Committee and Leading Age Clinical Advisory Committee. Now here I have a list of questions that I will be asking our panelists today, and with that, we begin with question number one. Question number one, what is hospice and palliative care and how did you get into this field of work? - Hi, I'll go ahead and start. I'm really excited and thankful to be here. So thank you, Neelam, and thank you Access Living. I'll begin by saying that hospice and palliative care are two different types of care, but they're very similar in that they're both focused on holistic comfort care and symptom management. So many times when we see doctors we think about cure and getting rid of a condition or fixing it, whereas hospice and palliative care really focus on managing the symptoms, so what can we do to make people feel better, have better days where their symptoms are alleviated? Those symptoms many times are pain, could also be trouble breathing, anxiety, swelling, just any number of symptoms, hospice and palliative care both work to alleviate those symptoms. - [Neelam] Thank you for that. Can you please tell me how you got into this field? - Sure, so I began working as a community health worker in 2020 during the pandemic and prior to that I had a little bit of experience personally with hospice care as my dad was a hospice patient. But basically I got into this work as part of starting my career as a community health worker and really having a desire to make a difference, right? To teach people what I had kind of learned on my own about hospice care, to kind of teach people that before they were in a crisis, before they needed the care to kind of make them aware of what it is because there aren't a lot of conversations in our society about serious illness until we are struck with serious illness. I also wanna let Sarah chime in here, too. - Thank you. - Yeah, absolutely, I can follow up and kind of even jump into the question in terms of what are the differences, but I wanna step back and just say thank you so much for allowing Maureen and I to come and speak on this, such an important topic for all of us. And as we, one of the things, many of you may have heard of recently, Jimmy Carter entering hospice, and I think that is once again opened up the conversation about death and dying and the comfort and support that hospice and palliative care can provide to people. So we're so grateful for the opportunity to be here and talk about something that we're so passionate about. I've been in this field for over 20 years now. I'm in a variety of different roles, and I always say my favorite job that I ever had was being a hospice social worker. I'm a social worker by background, and just being able to sit at the bedside of patients, holding their hands while they died, sharing memories with families, being able to share those tears and those stories has profoundly affected the trajectory of my life and my career. So I'm forever grateful for the opportunity that families have given me to share such a sacred space with them. And I think that is a really important part of this conversation, that people are scared of hospice, and that's part of one of the biggest barriers. We as a culture, as community, we don't wanna talk about death and dying, but the more we do, the more we make it a less scary thing to talk about, so always happy to have the opportunities to talk about these things. I just wanted to follow up a little bit on the side of sort of like what are some of the differences between hospice and palliative care, because I think that they're very important distinctions to make, and one of the things I always say is all hospice is palliative care, but not all palliative care is hospice, and I think that's a really important way to look at it. So hospice care is really specific care focused on end of life symptom management and sort of preparation for death. So in order for someone to qualify for hospice under the laws in the United States, is that they have to have, two physicians have to determine that if their disease were to take its natural course that they would likely have six months or less to live. So that's the key determining factor of whether someone qualifies for hospice care, that six months or less to live. So that encompasses a smaller pool of people that meet the criteria for hospice. And now does that mean people are only on hospice for six months? Not at all, some people are on hospice for two days, which I'm sure we'll talk about that sort of late access, but some people are on hospice much longer because even though two physicians may say that, we don't have that crystal ball, so we never really know what the trajectory of life expectancy is going to be. But it's sort of that best guess if the disease were to follow its natural course. So that's what qualifies someone for hospice. Now, palliative care is a much broader scope of care and I've had the opportunity to work and develop palliative care programs across several different agencies and I just have fallen in love. I started in hospice, but I've fallen in love with palliative care over the years because I think it's such an important service that is so underutilized, but serves so many and really the best time to start palliative care services is at the time of a serious illness diagnosis. Palliative care is a much broader scope, so we don't have that six month rule so people can receive palliative care services throughout the trajectory of their disease until at which time they do or may, or they qualify for hospice or may want to receive hospice services. So it's a much broader scope of care and as Maureen said, absolutely correct, both hospice and palliative care are focused on symptom management, increased comfort, alleviating the pain and symptoms that come along with chronic and serious illness. And the thing that, to me, those are sort of some of the key factors and I'm gonna give Maureen a chance to jump in as well and maybe pick up on anything I missed. Yeah, that was a great explanation, Sarah. And I just wanna add one thing because when I do work in the community, there is a lot of confusion around, well, hospice and palliative care sounds so very similar, and they are, so, Sarah hit on the six month or less prognosis being the main eligibility factor for hospice. Another important thing to note is that you can get palliative care services while you are pursuing curative treatments, and usually with hospice, that's not the case. So the example that I usually give is if, God forbid, I was diagnosed with cancer and the doctor said this is a very aggressive cancer, I could pursue chemotherapy, try and beat the cancer, and at the same time receive palliative care, which could help me manage my symptoms from the cancer and also maybe some harmful side effects from the chemo. However, if I wanna opt for hospice, that's really something you do when you are done with curative treatments, either because you don't believe they're going to work or you have just had enough of the chemo and you would rather focus on being comfortable. So that's a key distinction is that palliative care allows you the option to do both, curative treatments and comfort-based treatments. - Wow, that's really good distinction to know. Now, is hospice a place where one stays or is it a type of care that can be provided anywhere a patient lives? - Yeah, I can jump in on that one. So hospice care is not a place, it's a service. So hospice care is a type of care that is provided to people wherever they may live. So hospice care can be provided in a private home, in an apartment, in assisted living and skilled nursing care. So it is a service that comes to you and can be provided to you wherever you call home. Now there is a type of hospice care, a level, so there's different levels of hospice care, and one of them is inpatient care. So there is hospice available in an inpatient setting. And there's certain criteria that people have to meet, usually around unmanageable symptoms, and it's intended to be a short time that people are able to utilize inpatient care. So that's where sometimes you'll hear someone went to hospice or someone died in a hospice center or a hospice home, and those places do exist and they provide amazing care, but that is probably less than 5% of people that utilize hospice care, receive care in an inpatient where they go somewhere to stay and receive hospice care. The other 95% of hospice care is received in the home or wherever someone calls home. - Okay, that's, okay, great, now what are some of the, I mean you've already kind of highlighted this, but what are the main benefits, key benefits of hospice and palliative care? - So I can start with that one. I feel like there are a lot of benefits, and it obviously depends on each individual, but they've actually done studies and research with hospice that when you look at two patients with a similar diagnosis, one receiving hospice care and one not, the patient receiving hospice care tends to live about 28 days longer on average, and this is even though they are not receiving curative treatments. So that surprises a lot of folks, but I think it really speaks to the fact that with hospice you have, really experts in end of life care and you have a whole team, which can include doctors, nurses, social workers, chaplains, who are all working on your care and that specialized care, and that getting those symptoms under control not only helps people live a little bit longer, but live better, so you're really getting quality of life in those last days. So I think that's one big benefit. I would also say that hospice care includes, on the care team, the patient and their loved ones. So it is not, the hospice team is not there 24/7, they're not replacing the family, but rather they're working with the patient and the loved ones on specific goals of care. And they also offer support to those loved ones. You know, maybe a patient does not feel the need to talk with the social worker or talk with a chaplain, but the patient's spouse may, right? Because we know that illness can be just as hard on loved ones and caregivers as it can be for patients. So that's another key benefit is that support for the family and the loved ones. - Okay, yeah, I think a lot of people don't realize that. They think that you're just kind of institutionalized somewhere and isolated from your loved ones and your support system, great, so- - Can I just add, can I just add a little bit more to that because I think- - Yes, please. - You know, when I think about what are the benefits of hospice and palliative care, of course you're talking to two huge hospice and palliative care advocates, so we could go on for a long time about what the benefits are because I think we've both seen it firsthand. But really that I think, and speaking just about hospice, and then I'll follow up a little bit about palliative care, but like Maureen said, the hospice team is an interdisciplinary, comprehensive, holistic team. So there's the core team, which is, you have your physician, your nurse, your nurse's aid who can come and help bathe and dress and do all of those activities of daily living, you've got your social worker, your chaplain for spirituality needs, so you've got this whole team, but many hospices even offer more than that. They may offer music therapy, art therapy, pet therapy, child life services, volunteer services, just to have a volunteer come and read to you or play games with you or bake with you, all the things that are, after the hospice team finds out what's important to you. And I think that brings such value and it really changes, it's a shift in mindset and we have such a cultural view of cure, cure, cure, fight, fight, fight, win, beat these diseases, and there comes a time when that isn't the goal anymore. But that doesn't mean that we're giving up, it just means that we're changing what the goal is and the this team of people that can come around and like Maureen said, not just the patient but the family and really support and ensure that those goals at end of life, that all of the things you wanna do and say, and close up all your loose ends are really able to be supported by the hospice team who are trained to understand what those issues are. And on top of that, hospice also provides 13 months of grief support services to every family. So after a hospice patient dies, the family, identified family members, really anyone who needs support, has access to 13 months of support. That could be phone calls, letters, support groups, individual therapy, all, there's a lot of grief support services around that families get for over a year after the death. So I think those are all such a valuable pieces that many people don't know about hospice care. Palliative care is a little bit different and I think the values really fall more on increased quality of life, being able to manage nausea, pain, all of the things that come along, shortness of breath with a variety of different chronic illnesses, being able to manage those symptoms with a team of people that really understand how to manage them correctly, whether it be with a curative focus or not, really has proven time and time again to increase quality of life. So someone can get back out to the grocery store and do their shopping, someone can walk their dog, they can go to their granddaughter's band concert. There's all these things that, those are the goals that we're looking for. And I think when we look at it that way, we can see so clearly the value of utilizing services like this when we're faced with a chronic, serious or terminal illness. - Wow, I did not know this myself. Thank you so much for expanding on that. So, if one is interested in seeking hospice care, how does the process begin? How do you get involved? How do you enroll in hospice care? - Go ahead, Maureen. - I'll start by saying that it varies on the situation. As we mentioned, hospice care is really for people who are in the final stage of a terminal illness, But what gets tricky with that six months or less left to live prognosis is that it prompts a lot of people to wait really, way too long, and there's a variety of reasons for that. But to talk about how people start, many times they hear about hospice from their doctors, whether that's primary care or a specialist of some sort. And so I think this is part of the issue is you have to think about primary care doctors, oncologists, other specialists, their training from day one in medical school is to extend life, to fight disease, to do everything they can, the most aggressive treatments. I'm not at all faulting them for that, but they often think of hospice as an afterthought and not as a priority. So they might wait a really long time to bring it up to a patient or to a family member. Also, I think the stigma that exists in our society extends to healthcare professionals, right? A lot of doctors are scared to have those conversations. So sometimes it comes from a doctor or a hospital saying, "We think hospice might be a good option for you." Other times it comes directly from the patient or their loved ones. This was the case for me and my father. I was the one who said to my father, "I think you might be a good candidate for hospice care." And that prompted him to ask his doctor about it. And once he asked his doctor, the doctor said, "Oh, absolutely you'd be a great candidate for hospice." But the doctor would've never mentioned it on his own. So that's just kind of an anecdotal tale of sometimes how these things play out. But what we do also see is people who have used hospice or watched a loved one use hospice and have had a good experience are very like likely to talk about it and share it and say to their neighbor, "You know, have you considered hospice?" So sometimes it happens that way as well. - Okay, thank you, there are all these misconceptions. People are scared, I think one of the reasons people are scared to talk about this, including healthcare professionals, is because they're lacking in education themselves, is that, oh, when you're thinking about hospice care it means you only have days to live, you only have hours to live. But then there's the other piece with palliative care where it's not necessarily like that. So I know you touched on this earlier, but do you have anything more to say about that, where people are thinking, "I'm gonna die right away," it's just something very scary for people. - Yeah, it really is, and I think that is probably one of the biggest obstacles and barriers that we have in terms of access, is people's misconceptions about, "Well, if I sign up for hospice, that means I'm dying right away." Or even worse that signing up for hospice actually accelerates death or that hospice does something to make death come sooner. I mean, those are a really big misconceptions that still exist out there and I'm always surprised when I still hear them, but I do, and I know that they're there. So I think it's community education like this that really helps to clarify what hospice is and isn't. In a lot of clinical, a lot of education, I mean, to Maureen's point about physicians is helping physicians to understand and break down misconceptions about what hospice care is. It kind of goes back to the same idea of none of us wanna talk about this. No one wants to talk about death and dying. And that's no different for physicians. And I think in some ways it's even more, it's even more so for physicians because they are really trained under the do not harm, do everything we can to save lives. So when a life maybe can't be saved, it can be very hard for physicians to have those difficult conversations. So that is certainly one of our barriers. And I think just being able to talk more openly and honestly about what we want and what we want the end of our life to look like and to start those conversations so much sooner, it's so hard when we're having these conversations when someone's in a hospital bed, when there is no more treatments available, maybe, and then we're just having these conversations for the first time. It's so much different when we're having those conversations, perhaps at the time of diagnosis, or even better, when we're still healthy. So we're not really here to talk about advanced care planning, but I'll put in a plug for it, that everyone should have an advanced care plan and a decision maker identified of who will make decisions for you if you can't make them for yourselves. And everyone should talk to their loved ones about what they want and don't want at end of life. And the sooner we have those conversations and the more openly we have them, again, we break down those fears and those misconceptions about how fearful hospice is if we look at it through a different lens. - Sure, and in terms of starting the process of hospice care, some people might have questions about coverage, so how does that play out? Can you use Medicaid or Medicare to pay for your care? - Sure, I can walk through that process a little bit just 'cause that's sort of my background working in hospice and hospice provider side for so long. So once you get, like Maureen kind of went through, that physician suggests it to you or you feel, you just heard about hospice and maybe you think it might help your loved one or yourself, your first call is gonna be to that hospice agency. So there is many hospice agencies. You can look up your local agencies. There's several tools available which Maureen and I could provide, some information about how to find a hospice in your area as a follow up. But once you identify, you just make that phone call and normally you'll talk to an intake person or an admissions person and kind of walk them through what's happening, what the situation is, that you've talked to your physician, and that's kind of the first step. And then normally what would happen is they would, the hospice would schedule a time for a admission team member, usually a nurse, sometimes a social worker to come out, meet with the patient, meet with the family, and kind of talk about what the goals are, gather a little bit of information, medical records, et cetera, and then from that point they can determine, along with the physician, if the patient is eligible for hospice. Palliative care is somewhat the same, the eligibility criteria is different, but it's really just reaching out to the palliative care provider or having a physician recommend that for you. So that's kind of how that process normally starts. Now in terms of how it's paid for, hospice services are paid for under Medicare, Medicaid, most private insurances. Normally there is little to no out-of-pocket costs for hospice care. And that's again, a pretty big misconception. People think that they're gonna have to pay for this care. Palliative care is a little bit different. We've been making a lot of strides in palliative care reimbursement, but we're not there yet, we don't have in palliative care, like in hospice, we have a hospice benefit, so it's a comprehensive benefit, insurance covered benefit. We don't have that yet in palliative care, we're working on it, but palliative care is covered under Medicare, so if you have Medicare Part B, it's covered at 80% and it's covered the same as a physician's visit. And more and more private insurances are covering palliative care. Some state insurances palliative care, some don't. So palliative care is a little bit dicier. So your best bet is to talk with your insurance provider to find out what coverage, how palliative care is covered. So that gets a little bit dicier, but for hospice care it's normally covered at 100%. I don't know, Maureen, if you have additional things to add there. - Yeah, I just wanted to add on to that that I think that is, one of those misconceptions is that people think that hospice care is for rich people or affluent people or people who have means, and it is covered so robustly under Medicare and also under Medicaid. I also wanna say that here in Illinois, we're lucky enough that we have the Healthy Illinois program, which is for undocumented folks who would be eligible for Medicaid, if not for their immigration status. And hospice is also covered for those folks under the Healthy Illinois plan. So I just wanted to mention that. And I think that just going back a little to that question about misconceptions, I also think that another thing I hear a lot in the community is that for many cultures, for many groups, it is the family's duty to take care of someone. You think about if I need brain surgery, I'm gonna go out and find an expert in that. But if I need to be kept comfortable, I would consider my family members to be the experts in that, so I just wanna highlight that in a lot of communities, especially Black and Brown communities, hospice care is going on, but it's being done by family members. So I think it's really important that we address that misconception that hospice is not institutionalizing someone, it's not removing them from their home and that that healthcare team is not meant to replace the family, but rather they can provide some really important guidance because most of us, unless you've been through, you've never watched someone die from an extended illness, you're not familiar with the changes to the body and the things that happen. So the hospice care team can really help with all of that, in addition to kind of more logistical things like the fact that a patient doesn't have to, they no longer have to leave their home and go to doctor's appointments because the care is coming to them, the medication is coming to them, the equipment is coming to them. So I just wanted to highlight that as well. - Yeah, I mean, I'm just thinking about the kind of support this care also offers to family members because sometimes a situation like this can be even more difficult for family members, for caretakers, so that is good to know. Now my next question is why is it so hard for people to access hospice and palliative care? And, I know you just addressed some of those misconceptions, so I mean, is there anything more you would like to add to that? - Yeah, so I'll begin and then I definitely wanna give Sarah a chance as well. So Sarah mentioned one really important thing, which is advanced care planning. And this idea that many of us, we are focused on living our lives, paying our bills, raising our children, and we tend to push those what if thoughts down the road. So we don't plan and we don't think about these things until they're actually happening. And one situation that plays out over and over and over again is you have a person who's very ill and maybe they cannot voice their decision, make their own decision, and their family members are in conflict over what to do. One family member really feels like, "Mom would never give up, we should try another round of chemo, we should do this, we should do everything we can." The other family member says, "You know, I don't wanna see mom go on like this. She's in constant pain, she wouldn't wanna live this way, she would wanna be comfortable, so like let's focus on keeping her comfortable." So I think that happens a lot is those conflicts because people don't have the conversation until they're kind of in a crisis mode. And as we know with serious illnesses, they can be long, but they can also escalate quickly so sometimes people think that they have a lot more time than they actually do, so that's one thing. And the other thing I'll say is just in general it's difficult for us to think about ourselves or someone we love being seriously ill, right? That's hard, that's scary, but I think another thing that can impact these decisions is communication with healthcare professionals and also trust, right? We talked before about how some doctors have good intentions but just don't know a lot about hospice care. I think sadly there are may be also some bad actor physicians out there who wanna continue billing for dialysis or chemo. And so they don't bring these things up. So I think trust is another big one, right? If you have a good relationship with your physician, you can talk to them openly and you trust them, those discussions happen in a more relaxed and easy manner. - Okay, well thank you for expanding on that. Now moving on to our last question is that there has been a lot of discussion, I had mentioned this in the beginning in the introduction, that there's been a lot of discussion on passing physician assisted suicide bill in Illinois. So do you believe that this type of legislation undermines palliative and hospice care when we should be really talking more about strengthening this type of care, promoting it, raising awareness about it? So would you say that all this talk about passing this bill is undermining what you guys are trying to do? - I'll take that one because I think that's a really loaded question. I think, and advocacy has kind of been my, is my passion and many states have passed medical aid in dying for a variety of different reasons. And I think it's been an interesting trajectory to see what's happened in those states. So anyone who's interested in sort of learning more about how that's happened, I would encourage you to do your research on, I think there's 13 states now that have passed medical aid in dying in a variety of different ways. And then each state's programs and parameters look a little bit different. But I will say this, I think it's important and the focus that I think our advocacy team will have as this moves forward is really to clearly delineate the differences between what medical aid in dying is and encompasses versus what hospice and palliative care does, because one of the risks, I think is, and there's many, is that people will just lump it all into one big thing. Again, going back to that people already have an idea that hospice accelerates death. That we just give morphine and people die and that's what hospice care is. I mean, there are many people who think that and this sort of emphasizes that. So I think we have to be really careful as advocates for good quality care at end of life that we're always clear in delineating that they are two very different things and whatever your opinion on medical aid in dying is, pro or con, it is not the same thing as hospice and palliative care. And hospice and palliative care needs to be front and center at the table during these conversations. Our advocates need to be there and really be expressing, this is the value that we bring to the communities. I hear a lot in support around medical aid in dying when it comes to suffering at end of life and people who utilize it because they don't wanna suffer at end of life and I would, till my dying breath, make the counter-argument that good quality access to hospice and palliative care oftentimes, many times, I don't wanna say all times, 'cause of course there's exceptions, but eliminates pain and suffering at end of life. So I think the important is to know that there are different options and to understand what those different options are. I mean, I, as a social worker, I'm a very big advocate of patient choice and people being able to make their own choices at end of life has been something that I have believed in and fought for and advocated for my entire professional career. However, people need to know what all the choices are and understand what all the choices are and understand the pros, cons and the ramifications of what those choices are, so, certainly, I mean we haven't seen a bill in Illinois yet. We don't know what that would look like. I think it's really important that we're talking about it and advocating for hospice and palliative care and the services that we provide and improving access because again, that's one of our biggest barriers as people need to understand how to access, they need to have access. I mean, I would love, if we have the time, I would love for Maureen, I think there's a piece on access in underserved communities, that is a huge barrier. So there, until we really, I think, in how to overcome those barriers, that should be the conversation that we're having as a state. - I mean, we have a couple more minutes so if Maureen wants to jump in and say something? - Yeah, please Maureen. Yeah, I would just add to that I think Sarah made a really good point, right? That we don't conflate the two. That these are not the same thing. There is a misconception out there that people think that hospice is just pumping folks full of morphine and that is not the case. So I think we need to be clear about that. But I think also for people who are against or who are wary of this medical aid in dying potential bill, I think we only need to look at history, right? To see who is the most likely to be harmed by these type of bills, and that is Black and Brown people and disabled folks. That's just the truth of the matter when you look at the history and I think those same groups when we look at hospice care, hospice care still a young movement in the US and across the globe, and so a lot of people aren't using hospice care and white people are using hospice care at higher rates than communities of color. So myself and the other community health workers at the HAP Foundation, part of what we're tasked with is going into these communities and making sure not only that people understand that this care is out there, that it's available to them and how it helps, but making sure that they're heard and that they understand how to get this care delivered in culturally affirming ways that respects their lived experiences, respects their culture and their beliefs. So I personally, I would love to see more focus on expanding access to hospice and palliative care, expanding education around it because there are so many people that either don't know it exists or they misunderstand exactly what it is. So that, if I had my choice, I would focus our advocacy on that rather than a medical aid in dying bill, but that's just my opinion. - Okay, oh, I'm sorry, did you have something to say, Sarah? - No, I- - Oh, okay, okay. Well we are out of time, we have 10 minutes left for Q&A. Ryan, do you wanna jump in? - Yeah. Thank you so much for that engaging conversation, Sarah and Maureen and Neelam. I think we all learned a great amount and debunked some of those misconceptions that we had about palliative and hospice care, we just have a few minutes for questions. Let me get them to you. "How do you respond to the criticisms that hospice and palliative care is starting to look like other health institutions in the United States, to perpetuating, too interested in profit?" - Yeah, I will take that one and I think that is a great question, so thank you for asking it. There recently was a New York Times article sort of about it, I think it was called, "Hospice a For-Profit Hustle", and it was really eye-opening. So if you're interested in learning more about that, I would encourage you to read the article, but read it with caution because it is pretty hard to read. And I think the growth of the for-profit hospice industry is one of great concern and I think it's of great concern of all hospice advocates across the country. We went from a primarily non-for-profit industry to now an overwhelmingly for-profit industry probably in less than a decade. And that is a concern and there are some bad actors out there and there are some hospice providers that are not doing the right thing and that's important for consumers to know. So I think there's a couple avenues, Congress has taken this up and they are looking at the for-profit industry and looking at some of the bad actors, specifically some of those named in that article, and I think that's a good thing. I think we have to weed out hospices that are not doing the work and following the mission of what hospice care was intended to be and we have to do that. So I think that's really important. I think the other piece that's super important is consumer awareness, as a patient, as a consumer, looking at what the hospices in your communities are, interviewing them, asking them questions, I think we have a list of questions that you can ask as you're interviewing providers in your own community and really making sure that you know that you are accessing the highest quality hospice in your community. And I will say with much confidence that the overwhelming majority of our hospice providers are good, high quality, doing the right thing providers and that's for-profit and non-for-profits. But certainly we would be remiss not to acknowledge that there are some bad ones out there and we have to find them and have legislative ways to get them out of the game. - Can, thank you for that answer. I think that was complete and really speaks to how we want hospice to be is as a system-caring entity. Okay, we just have time for one more, "Can any of the panelists speak on natural or holistic remedies and herbs in assisting certain types of hospice care?" - Well I can start just by saying that, I don't have a lot of specific examples of this, I have seen that hospice care, by nature of being comfort-based and holistic, is much more open to to using many of these natural remedies, especially if it's something that is coming from the family members part of a culture. The hospice care team is usually just making sure that it is safe with whatever other treatments are being done, but usually they're okay with it. I'll also say that just talking about, before, some of the misconceptions about pain management, yes, one of the benefits of hospice care is that if you need strong painkillers such as morphine, you will be able to access them. But my experience has been many patients are very wary of using those strong painkillers because we are in the midst of an opioid epidemic and they've heard all about the pitfalls of that. So there are many patients who opt for less aggressive pain management. I've also seen a lot of patients who have opted to use medical marijuana and the hospice care team, they have to be careful about prescribing that because they could lose Medicare funding, but they're usually very much on board with the benefits and okay with folks using it. Sarah, do you have anything to add in terms of natural remedies in hospice? - No, I think, yeah, I would just agree with you that I think talking to the hospice team would be the first step, I don't really have anything additional to add to that. - Okay, thank you very much. We just time time for one more question and I'm sorry that we don't have time to answer all your questions. If you could send them as emails, I will be sure to get them onto Maureen and Sarah to answer if they're willing. "If a person is diagnosed with a serious disease and is receiving curative treatment, is there any downside to receiving palliative care?" - I would say no. - Yeah, I can't think of, I can't think of any. I think it's really just intended to support the team and one of the, I think great things about palliative care in a situation like that is they can kind of be the quarterback of the care, 'cause sometimes you may have five, six different doctors offices that you're working with and having that palliative care team kind of quarterback your care I think can be really helpful. So I couldn't see any drawbacks, but I'm probably a little biased! - Yeah, I agree, no drawbacks. And the other potential benefit is many of the providers who provide palliative care are also hospice providers. So it gives you a chance to kind of get to know that care provider and maybe you don't need hospice in the future, but if you do, you already have started forming a relationship with that provider so it could make a transition to hospice that much easier in addition to helping you through your symptoms while you're pursuing curative treatments, so I think it's a win-win. - I totally agree with that statement. Okay, so now I'm gonna close the webinar out. Thank you so much for being with us today, Sarah and Maureen, thank you to the interpreters, the Spanish and ASL interpreters. Once again, we will be having our next webinar on the dangers of physician assisted suicide sometime in March or April, and we'll let all of you know the exact date when we we finalize it. One of the good things we know now is that there will not be a bill introduced in Illinois this year. The time in this session of the Illinois legislature, the time to introduce a bill has gone past. So that is a positive thing. However, every we year we hear rumors that there is a bill, that groups are planning to introduce a bill, and we take it more serious. We have had some groups attempting to draft a bill. So we definitely expect a assisted suicide bill to come in coming years. So that's why this next webinar discussion is so important and we will have on that webinar people, representative of the Patients Rights Action Fund. Okay, thank you so much. - Thank you. - That was such an educational discussion on hospice and palliative care care and why it is so important that us and our ones are giving that option to live out their lives in a comfortable way. Thank you very much to all who attended, have a great day. - Thank you! - [Sarah] Thank you so much for having us. - Thank you.