Mari Ulrich
Thank you for having me. Hi everyone. My name is Mari Ulrich, and I’m the Associate Director of Development for PALTOWN, and it’s an honor to share a few minutes with you about something meaningful that we offer in our community, which is our In Memoriam pages. These pages are gentle, lasting tributes, and they honor loved ones, and at the same time, they give back to the community as well that supported them. These pages exist primarily because folks came actually to the organization and asked, how can we give back? And so one of the most powerful aspects of COLONTOWN is how deeply it supports people during treatment, caregiving and beyond. So when someone asks, when a loved one passes, how can we honor them? I’m going to scroll down here, how can we honor them, and how can we give back to the place that meant so much to them during their journey. So our In Memoriam pages were actually created organically as a response to that, as a response to that question. So what they are, it’s a personalized tribute page on the PALTOWN site, so friends and family can share a favorite photo, a short remembrance or a story. It’s a permanent place, so the pages will stay online forever and can be revisited anytime. Families can update or add memories later. And donation options are included, and gifts directly sustain COLONTOWN’s programs that supported these members during their time with us. So I created a sample page here. This is what the sample page might look like, and it basically says: In loving memory of your loved one. And it will have some photos at the top. Throughout, there can be some text in here talking about their family life, any sort of milestones, the disease, any sort of strength and optimism, really. The script, whatever you want to put in. The copy is really up to the family and the friends who want to put this page together. The photos also can be selected from however the family and friends would like it to go up. And, like I said, it can be modified at any time, and it’s just a nice, long, lasting tribute. It is not searchable on the PALTOWN site, so it’s not going to be something that you will come across unless you have a direct link to this site, but it is something where if somebody you know within your circle wants to revisit it on a regular basis, they have the ability to, like I said, it’ll be up forever. And then at the bottom, there is a donation option where you can donate in memory of your loved one, just talking about the support that COLONTOWN gave to this individual during their during their time with COLONTOWN. So why this matters is because these pages are going to be, obviously, more than just websites, kind of like Daniel was saying, it’s like, you want this person to have their memories and their stories told. So it’s a nice place for that to happen, to have meaningful spaces for families and for the community, it’ll be a great place for a legacy so your loved one’s story lives on and is a permanent connection, where families and friends and communities can revisit and share a place to give back. Donations will sustain COLONTOWN for future patients and caregivers, and it creates that nice circle of care. So remembrance, giving back and sustaining community, and I’ve actually created a number of these, and one family shared how comforting it was just to have this loved one’s page at a memorial service that they could send out to folks so friends who couldn’t even attend, the memorial service could still visit, see the photos, and donate in the honor of that loved one. They told us that extended the circle of remembrance well beyond just that one day. It may be somewhat similar to other pages that you see online. I know that there are other services that may be for treatment updates or just right after the person passes. Sometimes funeral homes might offer something similar, that are linked to obituaries and maybe offer more of a temporary service. But I just want to say again that these pages, we don’t ever plan to take them down, and they are tied to COLONTOWN, and they are shareable. And of course, if you ever want to make any updates, those can be made at any time. If there are any new photos or funny stories or memories, then those can also be updated, sometimes within the first few days of a person passing they want this page to go up right away, and oftentimes a couple of weeks later, they’ll have a little bit more time to think about. – Okay, I want to say something different. Or, – I was kind of in the middle of a lot of chaos initially, and now that this has that, I want to update it. And all of that is doable through our In Memoriam pages. So this last slide is just the step by step. The first thing that the friend and family might do is to email [email protected] and they can send any desired photos and short text copy. We can really work with anything. So if you don’t have too much and you just want to get the page started, we can definitely do that. And we can start to fill in some gaps. We can create the paragraph for you, if you just want to give us the bullet points, that’s 100% okay. And we will design the page and publish the page. Families can make any edits as they desire. Families, would then receive the link to share, and the page lives on forever, and updates are welcome at any time. But hopefully that’s a good overview of the services that we offer for the In Memoriam pages. And I do feel like it has been just a nice reprieve for a lot of our families to be able to go back and visit. So thank you.

Danielle Cordero
I’m Danielle Cordaro. I’m the Public Relations Consultant for the organization. We fulfill the final dreams of terminally ill adults. That is what we do. We believe passionately, in the words of Dr. Atul Gawande, author of Being Mortal, it matters to people how their stories come to close. Well, a dream often gives our recipients and their families the opportunity to make the most of the time they have left. It also improves their end-of-life care by addressing their emotional and psychological needs and allows them an element of control and independence. Like I said, we serve terminally ill adults and their families providing end-of-life dreams that offer joy, comfort and closure. But I think the joy really resonates the most. We see it in photos. We read about it in thank you letters we receive from Dream recipients, their families, care teams, their hospice teams. It’s a joy that starts early, because anticipating a dream can really lift the spirit, and the joy lingers on in the memories and stories, and perhaps best of all, the joy reaches out beyond the Dream recipient to the people on the sidelines, to those who may have made the referral, who are playing a part in fulfilling the dream. They are witnessing something important when someone who really needs it gets to experience something wonderful, and our natural response is joy. We receive no state or federal funding, and we rely solely on the donations of individuals and companies that align with our mission. Over the last three decades, we have served more than 35,000 dreams. I wanted to share several dreams along my journey here with you today. This is Eleanor. She wanted a birthday for her, a big 90th birthday where everyone could come and dance the night away. Her family, including great-grandchildren, all came together to celebrate her life. And her son-in-law told us after the party, it was such a success, and he considered all of us family now. So it was really special and lovely. To qualify, Dream recipients must be the age of 18 or older with a life expectancy of 12 months or less, or if they have a diagnosis like dementia or ALS or another progressive disease, if after the 12 months, they declined to a point where they can no longer actively participate or enjoy the dream they can qualify. We serve dreams in the United States and Puerto Rico. And last but not least, as I’m going through my notes here, they also have to lack the resources to fulfill the dream. And that isn’t necessarily financial. We’ll have Dream recipients that asked to meet a celebrity, for example, and so it’s just that they don’t have that connection. So we don’t want to say and limit anyone from applying just because they may be financially favorable, but so often with medical care, that’s not the case. Over the years, we’ve been privileged to hear from spouses, family members and close friends who told us how much Dream Foundation’s work meant to them and those they love. It just takes a scroll through our Instagram feed to take a glimpse at some of the lives we are touching. After 35,000 dreams, we have 1000’s of testimonials from social workers, healthcare teams, family members and dream recipients telling us what a difference the dream made. We wanted a credible, independent measure to show the impact of dreams, so we turned to the American Psychiatric Association for help. They suggested running a study to find out whether fulfilling dreams improves the well being of terminally ill patients using the internationally recognized five-item World Health Organization Well-eing Index Survey. It asks people how good they feel, or if they wake up feeling refreshed and rested, or how interested they are and what’s going on around them. The survey was given to applicants before and after the dream was served, and they analyzed the results. The study showed that 80% of those taking part in study reported a greater sense of well-being after a dream, with the average increase in well-being reported at 21% these findings demonstrate that dreams do improve well being for the recipient, even as they physically decline. Our recipients cross all therapeutic areas, but a vast majority, almost 7 in 10, have a cancer diagnosis, and since this is a community that supports colon cancer patients, survivors and caregivers, I pulled some relevant statistics from the last few years. In the last five years, we had 123 applicants from patients with colon cancer. 54 of them were under the age of 50. In the last three years, it was 64 applicants, 25 of them under the age of 50. And then the last year, we had 22 of them under the age of 50. So for this year, we had 12 applicants, 8 of them have been under the age of 50. — Oh, our Dream recipients are in age from 18 all the way up to 108, all over 6 to 8% are over the age of 50. I really wanted to get into the types of dreams fulfilled. A lot of people ask this and ask us this, and we have requests from across the country and across the whole spectrum. We group them into some broad categories. As you can see, ‘basic needs’ are dreams that improve the quality of life by addressing practical needs. This is a one-time purchase of something that a dream recipient needs to improve some aspect of their day to day life. These dreams are born out of a hunger, not for adventure, but for some kind of normal, a return to their old self. This could be a computer to connect with friends and family, a large TV for entertainment, an electric recliner chair for a nap, an air conditioner window unit to stay comfortable, or even to get pest control services. We all appreciate the benefits of a vacation, but for many of our dream recipients and their families, this is the first and often the last family vacation, it’s an opportunity to create happy memories, to live carefree for a few days and spend quality time that those are with those that are closest. We also have family reunions, and those are all about visiting family, or bringing family for a visit, or special event where family and friends come together to celebrate, to reminisce, to share stories and to say goodbye. Maybe it’s a precious chance to say hello to someone who’s dear but they have only seen them in photos until that moment. And it’s surprising on how often that this happens. 4% of our requests are about an interaction with a personal hero that I had mentioned earlier, a celebrity or public figure that inspired the Dream recipient. But because we’re dealing with another person’s schedule and preferences, these dreams typically take a little bit longer to plan, and we can’t always count on the outcome, but we certainly do try. This is sort of the same with athletes, but sporting events, we have a great many relationships with sporting teams, and can often set up attendance to games or memorabilia. A ‘Daydream’ is a dream that can be accomplished in a day, so a spa day, or maybe a dinner and a movie, or anything else that can make it happen. We had a recipient who wanted to just take his wife to Chili’s for a special treat. And I have to tell you, it’s not just the recipient and his wife that felt special, but the staff at Chili’s really made it special, and they felt just as much that it was an unforgettable day. So it really is this spreading effect that these Dreams have. 9% of our requests are for theme parks. Most of these requests come from families with children wanting to keep a promise or see their children be kids again away from the daily routine. I will say that we no longer provide Disneyland tickets, but we can certainly help with travel to and from, and most of the other theme parks are kind enough to support us.

Many people are surprised to learn that every fifth room applicant lives with a child in the home. The dream to fulfill not only supports the Dream recipient, but their families too. Many requests are about promises made to children that now seem impossible to keep without help. We work with an organization such as an airline, theme park or hotel, and use their donations to keep our costs low and stretch our donor dollars. Only by using donated accommodations, airline tickets and activities are we able to say yes to every applicant that qualifies for a Dream. 13% of our Dreams, we fill our emergency Dreams. These Dreams are for applicants with a life expectancy of less than two months. When these Dreams come in, we have an expedited process to serve them as quickly as possible. Many emergency Dreams are for bedside reunions with the recipient, where the recipient only has a few days left. Those can be turned around and flights booked within 24 to 48 hours. On the other hand, we do not plan trips out of state for emergency requests, as we found that most of them end up not happening at all. So if an emergency Dream request comes in to ask for a vacation, we plan one within a two hour drive radius of the applicant’s home. And finally, almost half of our Dreams are hand delivered by a volunteer or partner. We call these ‘Dream Deliveries’ and for our volunteers and partners, it gives them an opportunity to connect to our mission and see firsthand the difference they make in our Dream recipients’ lives. For the Dream recipient, they get to see the compassion and commitment of people to help from people they never met. For many hospice patients, they get to celebrate their dream with their hospice team and their social worker or the nurses that care for them. I wanted to share about Marquis, originally from California. He spent his final days in a nursing home in Michigan, even though he suffered advanced dementia, his social worker let us know that every time his daughter called or was mentioned, he smiled and seemed to wake up a little. So we flew his daughter from California to his bedside for a visit, and she let us know that she had a wonderful time with her dad and he was so happy to see her. In her words, “my heart is so full, and I’m forever grateful”. Mark and his wife, Helene, had intended to go on a honeymoon when they were married 24 years ago, but were never able to make it happen. When Mark was diagnosed with stage IV colon cancer, they realized it was now or never, but they needed help. We were able to work with the local community in Hawaii to bring the honeymoon to life that Mark and Helene had always dreamed of. The family spent six days and five nights exploring the island of Maui. Their trip was made complete with a morning cruise where Mark swam in the warm, crystal blue ocean, a moment of pure joy and relief. This is one of my favorites, Judy. She’s 82 from Saint Paul, Minnesota. She was diagnosed with end stage liver cancer. Her dream was to ride a Harley David Davidson motorcycle, and she wrote to us, “there is a sense of freedom in riding a motorcycle. For me, the thrill of the risk is exciting. This will be my last ride.”, and it was really important for Judy to ride on the body of the motorcycle, not in a sidecar. So with the help of the St. Paul Harley Davidson, her dream came true, and you can just see her. She’s just so cute, just enjoying the ride of her life. Another dream I want to share with you, who you may have heard about, Tanner, who was diagnosed with stage IV colon cancer at 26 years old, just two years after he married the love of his life, Shea, and their life took a very sharp and unexpected turn. The couple faced countless challenges, but found their strength and their love, their family and something a little unexpected. Star Wars, the timeless stories of hope, resilience and defying the odds have always been a source of inspiration. So when Tanner reached out to us about meeting his hero, Mark Hamill, we were unsure if we could make it happen. But fortunately, Mark and his wife were delighted and honored to bring Tanner’s dream to life, as you can see here. I want to tell you a little bit about our program Dreams for Veterans. We’ve fulfilled dreams for veterans right from our first days in 1994 but by 2014 we saw that veterans and active service members’ dreams gave us a unique opportunity to acknowledge that an important chapter in these recipients’ lives is to engage with their families and community. We decided to formalize our commitment to them and created a subprogram called, Dreams for Veterans. The program has the same qualifications as a general Dream Program, but an applicant must also show proof of service. In 2015 it was officially launched. In 2016, we formed a strategic partnership with the Department of Veterans Affairs, and since then, we have served over 1200 Dreams to veterans and active service members. Another wonderful aspect of this program is that we try to provide veteran to veteran Dream deliveries, where a veteran and a representative from the VA or from a Veteran Service Organization deliver the Dream to the recipient. These special Dream deliveries allow volunteers to meet, honor and acknowledge fellow veterans by presenting them with their Dream package and celebrating together. Oftentimes, the delivery will include a pinning or a challenge coin. We created a special Dreams for Veterans challenge coin that was cast specifically for these occasions to be presented as a token of recognition and gratitude for their service. Let us know if you’re caring for a veteran. We have a veteran application. We have our general Dream application. We have our AST hospice application. So I just want to share a couple of Dreams for Veterans stories. When Gerald served in the army, he hoped he would get to ride a helicopter, but it never came to be. Decades later, diagnosed with lung cancer, he still harbored the dream of flying deep within his heart. With encouragement and help from a social worker, he filled out the application to manifest his dream of a ride in his home state of Montana. I hope you can see the smile as it says it all. Gerald was so happy after his dream came true that, according to a social worker, he told everyone he encountered about it several weeks later, after he flew above the clouds. Philip served in the Navy during World War Two and the Korean War. He spent over 29 years in radio and television broadcasting. Thereafter, he’s somewhat of a historical figure in Pittsburgh broadcasting. His social worker told us, after being diagnosed with colon cancer, to his friends and family, he shared his dream of visiting the old television station CBC Pittsburgh that he had worked out for all of those years, and they were honored to work with us for a special, personalized visit for him, that even included a “shout out” during the day’s broadcast. And for John, he wanted to visit the Vietnam Memorial while in Washington DC, to say goodbye to fallen comrades with whom he served with. We worked with both Southwest Airlines and Honor Flight. It’s always wonderful when we have an opportunity to collaborate with other veteran service organizations and pool those resources so we can do more for our veterans. And it is the true essence of Dream Foundation and our Dreams for Veterans Program, people coming together, sometimes complete strangers, showing the Dream recipient that they matter and are not alone. We are a resource for individuals, caregivers, hospice and veteran organizations who are in need. Their families, friends, patients and clients have, or hear about opportunities they wish they still had, and by reaching out to us, those needs and opportunities can turn into dreams come true. We are here to be an extension of your team. There’s a lot I more I can say, but I feel like we’re running out of time. So, the referral process is so important. I know a lot of these organizations work in end-of-life care, but 52% of our applications are referrals, and those who do refer tend to be such a special part of the dream. We’ve had social workers who have been referring Dreams for 10 plus years. So it really is a wonderful tool for them. The application process is quite simple. Once you’re ready to refer a Dream, you just need the application form, the letter, financial documentation and a photo. Once you’re ready, you’ll go to our website, DreamFunding.org, or dreamsforveterans.org, and I know it seems like a lot, but like any application, we want to make, there’s the waiver of release, we want to make sure we have their general information. There’s a Dream agreement. Of course, if they’re a veteran, we want to get their proof of service. But a lot of questions about the application could be answered in our FAQs, but there’s a lot of information. Of course, our team is always here to help. I just want to touch base on the letter. For for me as the public relations consultant this really, this is one of those… Those are such important things. It really lets us know about the recipient and what they long for. The recipient can write their own letter, or have a friend or a social worker write it for them. But we want to understand the importance of the request, where it comes from, as it helps us to write pitches for in-kind donations, get donated hotel nights, event tickets, and if they make for a good press candidate. Of course, that’s something that helps me share our story, so that more people know about who we are and what our mission is. Financial documentation pretty straightforward. There’s lots of different ways to show that, but all the details are there in our application. We also love a photo. So once the applications come in, our Dream coordinators receive them. It gives them an idea of who they’re making that initial call to, and it can be taken within the last 12 months, it can be a snapshot on the phone, just something that sets apart the applicant the Dream process. Once we receive the application, which is like with all those elements that I just mentioned, we will, unless it’s an emergency Dream that we go by more quickly, then we have to go through medical verification. And then sometimes that can take a few days to a few months. It depends on how responsive the medical team is. And then once that happens, then our Dream coordinators will you get the dreams, and then they will go to work with planning them. And then there’s the Dream delivery. And so all this, like I said earlier, emergency review, 24 hours to three months. So it really depends on the life expectancy of the Dream recipient and how fast their teams help us as well. And then, of course, we love those feedback and the photos thereafter, and stories and quotes and whatnot. As the public relations consultant, I’d be remiss not to share our social media. Please do follow us. Please do share with everyone in your communities. You can just scroll through to find out more about our Dream recipients and and who we are, and what we do, but of course, you can always reach out to me, but I also recommend reaching out to Barbara Shook our VP of programs. She was unable to come today, and it was just it was so nice to speak with all of you, I really appreciate you taking the time, and I hope that we can collaborate on Dreams in the future.

Lauryn Cooney
Thank you, Danni, that was such a great, positive note. Not that everybody wasn’t positive, but a great note to end on. I really appreciate it. I appreciate all our presenters that were here today. I know we went significantly over, but everybody had such important things to say, and it’s going to be such a valuable asset to our community, and to the different communities, and even to each other just knowing what services exist. So I just wanted to thank everyone for being here and taking time out of your schedule, and we will be in touch. So thank you all.

Amy Tucci 
Hi there. I’m Amy Tucci. I’m president Hospice Foundation of America, and I’m going to tell you a little bit about hospice care, a much misunderstood part of our healthcare system, and so here we go. First, I’ll tell you a little bit about the Hospice Foundation of America. We’ve been around since 1982. We work to improve care at the bedside through professional education, and we provide free and unbiased advice to people, and information to people who need information about hospice care and grief, or really, any kind of end of life care. Because of that, much of our work focuses around advanced care planning. We currently have a national project going on that’s looking at two advanced care planning tools, funded by NIH, and we’re about to have our 75th event. We are very proud of that project. We did a lot with some other advanced care planning, things such as being mortal. And right now we’re currently working with the Hello Game and the Conversation Project. We are not a hospice provider. There is no single hospice entity in the United States. There are 5000 hospice providers, all operating independently, but mostly, most all of them are working within the confines of the Medicare Hospice Benefit, which is the government sets the rules around hospice. So a little bit about hospice in the United States: Hospice has only been around for about 51 years in the United States in a formal way. And that started back in 1974 when the dean of Yale’s nursing school, Florence Wald, went to visit St. Christopher’s Hospice in Great Britain, and she came back and she decided that she wanted to set up the first actual hospice in the United States, which is the Connecticut Hospice in Branford, Connecticut, which is still around today. After this eight year period before Congress passed the Medicare Benefit, hospices were popping up all over the United States. Most of them were volunteer hospices. They were run by doctors and nurses and and the whole impetus for this was that people were starting to talk about death and dying, largely because of work of people like Elizabeth Kubler Ross, who wrote a very famous book called, “On Death and Dying” and it really started a wave, and that wave has continued. A poll in 1997 showed that most people did not want to die at a hospital. They wanted to die at home, and they wanted to die with their loved ones present, and next to things that they loved and were important to them. And so hospice has grown and grown. Now about half of all deaths in the United States occur under hospice care, and that includes deaths of every kind. So that’s including car accidents and things like that. Those people typically would not be hospice patients. But even including sudden deaths, it’s still half of all deaths. So the top seven diagnosis for hospice dying and reasons that people die in hospice, reasons that they’re referred to hospice, the number one reason today is Alzheimer’s disease and dementia. That’s changed recently. Cancer used to be the number one reason for referral to hospice, it’s no longer. Now it’s the third reason, and you can see the other top diagnoses here, kidney disease is a reason that people die in hospice, but people cannot receive dialysis while on hospice, and I’ll get into that a little bit later. So if somebody has kidney disease and is on dialysis, they would have to go off dialysis before going onto hospice. People are really confused about when hospice care is appropriate. Hospice care is appropriate – and it can only be accessed when a doctors opinion is that the prognosis for life is six months or less. That does not mean that somebody can only be in hospice for six months, but that is the way the door opens to hospice admission. Every illness has its own specific criteria for hospice admission, but it’s also when prognosis is very uncertain, so, and we see this a lot with Alzheimer’s disease, where the person may be referred to hospice, and the doctor may think that the person has six months or less to live, the person ends up coming onto hospice, being discharged from hospice, going back onto hospice, and the reason they’re discharged is if they no longer meet the medical criteria for hospice, the government requires that they be discharged so that can set up a real uncomfortable situation for families, and it’s something that I hope the government is doing something to fix. We certainly would support anything like that. When treatment is that was aimed at curing or stabilizing is no longer effective. That’s another time that hospice would be appropriate. But of course, it always comes with the doctors evaluation as well. And if a patient no longer desires cured treatment and really wants to shift from cure to quality. My mother died of a glioblastoma, and when she had gone through radiation and chemotherapy, even though she had an inoperable brain tumor, they did do some palliative treatment before she entered hospice, but she made the decision when she just could not face going back to radiation and chemo again because it was making her so sick and ruining the quality of her life. So she went onto hospice about seven months before she died, the doctor had thought that she had three months, three weeks or less to live when she was admitted to hospice, but she ended up really having a wonderful six month to seven month period on hospice where our family was around her and we had really wonderful moments that we could share together. I think she would have died much sooner if she had continued the radiation and chemotherapy, and people choose hospice also when, just like as my mother did, when the goal becomes symptom management and other types of care that hospice can provide. So for cancer patients, the palliative performance scale is often used by doctors to determine whether their patient is eligible for hospice and patients who meet the standard are unable to, really participate in normal activity or do normal work. They’re unable to move well, spend about 50% of their time in bed or in a chair or in a single room. They have evidence of significant disease. They have a hard time taking care of themselves by themselves, and they have a reduced nutritional intake due to appetite loss or other disease characteristics. So the overall goal of hospice is to improve the quality of life for patients and families facing terminal illness, and they really treat the the entire person, and they also treat the entire family, so they’re providing psychosocial support the family. They can even provide grief support before death to both the patient and the family, because, as I think it was Omni, I think mentioned that the loss process is something that starts long before death, and so hospice is there for the person in those ways. Another thing that people don’t understand about hospice, and I always think it’s very important that they do understand it, is that the family is typically heavily involved in hospice care. It is by no means a requirement that a hospice patient has a family member who’s a primary caregiver, but it is something that is pretty standard in hospice and family caregivers do a lot of work when they have a family member who is in hospice care. It can be a big adjustment for family members and hospice is there to support that, but it’s something that people should know about hospice, and for our family, it gave us, as I said, just a wonderful opportunity to be together in my mother’s final months of life. But it does take a commitment to want to be a caregiver. The hospice staff makes regular visits to assess the patient, adjust medications and do other things. For example, a certified nursing assistant will help the patient bathe or bathe the patient, if necessary. The hospice will provide all the durable medical equipment necessary, so hospital bed, if that’s desired and necessary, oxygen, any other kind of equipment that might be necessary that’s all fully covered under Medicare and Medicaid and most private insurance also covers all of the cost of hospice or very few out of pocket expenses. A lot of people ask, how many times does a nurse come every week? The average is three times a week. If somebody is admitted to hospice and is has a terminal prognosis, that’s the only way they’d be admitted to hospice. But oftentimes people are not. They don’t need a nurse three times a week. You know, maybe they need a nurse once a week, and maybe they need a social worker twice a week and a chaplain once a week, and I’ll get to the members of the hospice team in a second. So the hospice staff is always on call 24 hours a day. So that means that a nurse and a physician should always be available to come to the house if necessary. Most hospice care is delivered in a person’s home. A person’s home is defined very broadly by hospice. It can be private residence, it can be a nursing home, it can be an assisted living facility, depending on the assisted living facility’s rules. A hospice team consists of registered nurses, therapists such as speech therapists, physical therapists, occupational therapists, hospice aides who are usually certified nurse assistants, brief counselors, social workers, physicians, chaplains, and last but not least, certainly, our volunteers. Volunteers are there to provide and be able to do things like run run errands for the family, or they can also do things like mow the lawn, walk the dog, or just sit with a patient, read to the patient, give a family member who’s providing care a break from caregiving so they can go out and do something that they want to do. Hospices, all hospices that participate with Medicare have to have 5% of their patient care hours they have to certify have been provided by volunteers. So overall, the services that are provided include the number one thing, which is to manage patients’ pain and any other symptoms that go along with that pain, and that can range from spiritual pain to physical pain. They provide the medications and medical equipment. Many hospices deliver the medications to the patient’s home. They instruct the family how to care for a patient, how to help a patient, for example, get out of bed, how to move them to the toilet, those sorts of things that are really important when you’re a caregiver. As I said, they’ll help with bathing and when, or if symptoms are cannot be managed at home, then there they can arrange for inpatient care or 24 hour care by a nurse at home. Okay, I talked to you about the speech and physical therapy occupational therapy, if it can improve the quality of life for a patient, this is something that the hospice will provide. In my mother’s case, for example she lost her ability to speak, and the speech therapist came and helped her speak for a little bit longer, and it was very, very helpful. And so, and though we have on this slide, it’s rare. It’s actually gaining more and more traction. It is something that’s required by the the Medicare regulations, and there are many hospices that have really embraced it recently and are offering physical therapy and occupational therapy, in particular, speech and to their patients, because it does improve their quality of life, and that with speech therapy, this is often necessary for people with Alzheimer’s because it involves swallowing. So it’s a very valuable service that hospice can provide, and hospice also provides grief support. It’s required to provide 12 months of grief support after a death, but that grief support can happen prior to death, and it is often something that patients and families take advantage of prior to death. There are four levels of hospice care. There’s routine hospice care, which is the care that’s the sort of the basic hospice care, which is the care that’s at home, where the nurse will come and and other members of the hospice team will come to the person’s home, or wherever they’re living. There’s continuous home care, which is a step up, which would be a registered nurse, being at the home for much greater periods during the day if pain couldn’t be managed by the family and by the prescriptions that were available to the family. There’s inpatient respite care, which particularly if somebody is on hospice for an extended period of time, it can give the caregiver a break, and so some hospices will provide that by sending somebody to a person’s home, and some hospices the person is moved to a nursing home or a hospital for the period the hospice patient is moved there for a period of five days, where when the the caregiver can can get away, maybe the caregiver needs surgery or needs to go to a wedding or something like that, so that is available. And then finally, general inpatient care is when the pain and other symptoms cannot be managed at home. That occurs in either a hospice inpatient setting, which might be a building that’s owned by the hospice where the person is transported for a short period of time, hopefully, until the pain symptoms are managed, and then the person is returned to their home, in some cases, or someone will die in that environment, and in some cases, it’s not the same level of care, but there are a few hospices, not many, that have residential facilities. So in those situations, that’s not considered a level of care. But in those situations, somebody would be paying for their room and board at the facility, and their hospice care would be covered by insurance.

Hospice care can really last pretty indefinitely, as we saw with President Carter, who I think was received hospice care for at least two years. The average is 97 days, median of 18 days, and very few patients, only about 10% are receiving hospice care for more than 280 or so days, seven days, if, as I mentioned earlier, if the person is considered hospice ineligible, because their health either improves, or they decide to seek curative treatment, or they decide to cease to say, enter a clinical trial, then they would be discharged from hospice, and they can return to hospice at any time after being discharged, as long as they are medically appropriate for it. I’m just speaking briefly about grief support. Hospice is the only part of our US healthcare system that does provide grief support. Many hospices provide grief support even if the family member who is being grieved did not die in the care of hospice. And volunteers are a very important part of hospice care. And as I mentioned, about 5% of hospice care is provided by volunteers. So we get the question a lot about what’s different about palliative care and hospice care, because these terms are often used interchangeably. Palliative care is part of hospice care. It’s probably the biggest part. That’s what hospice care is all about, is to provide palliative care, which is the management of pain and symptoms. But hospice as a benefit, differs from palliative care, because when you’re receiving palliative care, you can continue to pursue curative treatment, which you cannot do when you’re receiving hospice care. Palliative care is often provided on an outpatient basis, instead of in-home setting. That too is changing. Many hospices are now offering palliative care before a hospital patient is hospice eligible and it really depends on the hospice, and often how big the hospice is, but it’s more and more often available. Palliative care is often available from a hospice provider. However, it is not reimbursable in the same way that hospice care is reimbursable as a package of services. I can answer any questions about palliative care as well. People often ask us about radiation, chemotherapy and immunotherapy while receiving hospice and if the radiation and chemotherapy is cure oriented. That is not allowable on hospice according to the government rules, however, many hospices will cover radiation and chemotherapy for their patients, as long as it has a therapeutic effect. So if it is improving the life of a patient, and if for example, the patient might have an esophageal tumor, and the patient’s quality of life is much improved by the radiation that is shrinking that tumor that will be allowed. In chemotherapy much more selectively, and I will say that the bigger hospice is, the more able they are, the more resources they are to provide these additional treatments. Immunotherapy is not permitted while in hospice, but that may change at some point. Consumer Assessment for Healthcare Providers and Systems found in the survey they did that the number one complaint that families have about hospice care is that they didn’t know when they could get it and they didn’t take advantage of it soon enough. From our experience talking to literally 1000’s of people every year about hospice care, we have found that people, the longer they can take advantage of hospice care, the happier they are with hospice care. You don’t want to get into a situation where the oncologist is, dialing 911, for hospice. Hospice is not an emergency kind of healthcare. It’s a healthcare that is more like, slow healthcare, and so I always encourage people to look into it even before they think it might be time. We tell people, “don’t wait for your physician to bring it up”. Oncologists went to medical school to cure people of things that they can always cure them of, and the same with with every other doctor that is in the business of curing. And so I think there’s a reluctance sometimes with physicians, to acknowledge that treatment isn’t working like they wanted it to, and they keep trying new things and doing new things. But it’s important to let your doctor know if you’re interested in hospice care, and talk to your loved ones about it as well. It may not be time, right? It might not be time, and may be far, like three years away from even thinking about hospice or needing hospice. But if it’s on the radar screen, at least you’re ready, and your loved ones are too. So like I said, start the conversations with loved ones and medical providers. You can also self refer to a hospice. So if your physician is saying, “No, I don’t think it’s time for hospice.” it’s possible to make a phone call to hospice and ask for an evaluation. They will, in turn, speak with your doctor and review medical records as well. And in terms of choosing a hospice, oftentimes physicians are good referral sources to a hospice, or a physician will refer to a specific hospice, but you can always choose the hospice that you want to use. It’s like any other kind of health care. Ask families and friends if they’ve had experience with a hospice. The Centers for Medicare and Medicaid has a helpful tool that’s called care “Compare”. It’s not perfect, but it does provide family ratings. So hospice care, it’s searchable, so you can search by zip code to find all the hospice providers, almost all the hospice providers in your area. If a hospice is very small, it won’t be listed on Compare. You can also visit with hospice providers. You can ask a hospice provider to come to your home to talk to them. There’s no cost. You can interview the hospice. On our website, we have questions to ask a hospice about the kind of care they provide and what their standards are, and even though there are some basic standards, every hospice is going to have a slightly different personality, and maybe that personality is not going to mesh with your personality, but it’s important to talk to the hospice that’s going to provide care to make sure that you’re in line. Now, if you do have a hospice that that is providing care and you don’t like it, and that’s possible, you can change providers. And this happens with some, not a lot of frequency, but it happens, and in that case, the hospice that is providing care is required to work with a hospice that’s assuming care and make it as seamless as possible. So this is our website. We also have a free service where we have a nurse practitioner who is certified in hospice and palliative care. She answers personally herself, all of the questions that come in through our website. We receive dozens of questions every day, and we answer all the questions confidentially, and we try to answer everything within 24 hours. Get Palliative Care is an excellent resource, also about which provides a directory of palliative care programs. We were funded to produce a movie which can be watched on our website, called, “Hospice – Something More” that follows several people through the hospice experience, and it’s just a beautiful movie, and I encourage you to watch it when you have time. And that is it for me.