Lauryn Cooney 0:00
To say good afternoon to everyone, and thank you all for coming to our resource fair today. We named it from taboo to to do, taking the mystery out of the end of life, out of end of life, wishes and planning. We have a really great group of organizations with us today, and I’m very excited to hear what each of them have to say. I just wanted in the beginning to recognize the heaviness of this resource fair and these topics. I know they can be sometimes a lot to think about, but I think it’s important.

Lauryn Cooney 0:39
I think it’s important. I think it’s important for all of us to think about these things. And I just really wanted to bring together these organizations so that hopefully we can start these conversations and center around end of life, different planning, not just for cancer patients and for caregivers, but I think this is a good topic for everyone. These are just things we all should be thinking about, no matter kind of where we think we are, where we are in life. So there’s a lot to cover. If you’re watching the recording, I would say, you know, feel free to pace yourself. Don’t give up. Like, if this is hard for you, just keep you know, take a break, come back to it and explore these topics. I want to get right to our presenters, since this is pretty good organizations, and I just want them all to have plenty of time. So we are going to start off with Planning My Way, and we have both Susan and I believe Nicole will be running her PowerPoint, so I will turn it over to them.

Susan Gold 1:51
Lauren, it’s great to be here, and thanks for the amazing presenters. I did my homework before I came on, and I just really applaud each and every one that’s joined in, and I’m so amazed by your community and what you’ve created. So it’s a privilege to be here. My name is Susan Gold, and I am the Director of Communications for the Kenneth Dixon Foundation, who are behind Planning My Way and I’m joined by my colleague, Nicole Glover, who heads up our media, and after long and successful careers in the entertainment industry, Nicole and I both were looking for something meaningful, and somehow got led to the Cunniff Dixon Foundation, and I was just absolutely stunned with Planning My Way. It’s a digital tool that helps you create with care to empower individuals and family members to plan for their future health care decisions with clarity and peace of mind. And it was developed by a very diverse panel of end of life experts, including clergy and clinicians and consumer advocates, and it’s free, and I couldn’t understand that when I joined on, I was like, how would anybody want to create something as detailed in an in depth and as resourced as Planning My Way, and then give it away, no strings attached, like no investing, nothing. So I want to tell you a little bit about Andy Baxter, who founded the Cunniff Dixon Foundation. He was in love with his beautiful wife, Carly, and they’re pictured. Carly, unfortunately was or fortunately was diagnosed with metatastic breast cancer, and Carly is the epitome of the topic today, she was not about to let this taboo push her away from really facing her diagnosis as part of her life, and with her family physician, Dr. Peter Dixon, she created an end of life care plan that meant something to her. She was very specific about treatments that she wanted and she didn’t want, and she didn’t want this to be left to her family members, and certainly to her husband, to have to make difficult decisions on her behalf. So Carly died at home. She was surrounded by her family. She died in her own bed, and the reason was because she put this plan together, and we all hope that we have a peaceful end of life experience achieving that starts with preparation. I mean, certainly what we do know is we don’t know our expiration date. They’re individual. And like Lauren said, you know, these tools and certainly Planning My Way is for everyone. I went right through it as soon as I joined on, and I still update it annually. And I feel joy that I’ve taken this responsibility for one of the most moving parts of my life, it is a passage, and we will all face it. So planning for end of life care is just like writing a will. It ensures your wishes are going to be honored and your loved ones are relieved from difficult decisions during very emotional moments, and after Andy Baxter experienced what he did with Carly and with Dr. Peter Dixon, he was so moved. He was devastated, but he was so moved, and he wanted to honor the experience, because he realized not everyone is fortunate enough to have the experience that he did with Carly, so he created the Cunniff Dixon Foundation, and our mission is to support end of life and palliative care through education, collaboration and recognition. So annually, we recognize the top physicians, and every other year the top nurses in end of life care, because they’re usually the unsung heroes, and we have met some of the most incredible human beings. Nicole and I are just back from L Neck, which is an end of life nursing educational consortium, and we met these true heroes, the celebrities we served in the past. They’re not the heroes. The real heroes are the ones in the trenches taking care of us on a regular basis. So through the Cunniff Dixon Foundation, he decided people need a tool so they can plan, and it’s not easy, but like, let’s make this fun. Let’s make this something that we can celebrate. My goodness, we’ve all had trudges through this life experience, and some of them haven’t been pretty. Let’s celebrate our life. So Planning My Way is a practical resource. It is digital, and you can print it, and it’s a road map for your journey. And you are never alone in this process. So if you take control of your care choices now, you can ensure your voice is heard by deciding the care you want if treatments are no longer available. And I’m going to share a personal story a very dear friend, more than several people I know have transitioned through colon cancer, and one of my friends had an advanced care plan before she began her hospitalizations, and she was adamant that when treatments failed, she not be dragged into ICU for more treatments. She did not want that, and she had a plan in place, and one night, in the middle of the night, there was a physician that came and insisted to the attending nurse, that they take her to ICU. And the intent, the attending nurse stood up for my friend and said, it’s not in her end-of-life care plan, you will not take her to ICU. These plans also ease the burden. I mean, every, most everybody, has somebody in their family that can be a little, you know, bombastic or, you know, want things their way. This plan ensures there’s specific clarity, and that your wishes will be honored even if you’re incapable of voicing them. And when you prepare, while you’re strong, it gives you the clarity to make decisions that truly reflect who you are. So there are four areas when you once you get to planningmyway.org to start your planning experience, thinking about what you want now for peace of mind later, and then choosing who you really trust as your spokesperson or your proxy or your surrogate. It may be your partner, it may be a parent, but it’s important that you honestly, authentically trust that person to go ahead and follow your wishes, even though it may be difficult, and then talking with other people, with your family, with your friends, with your caregivers, with your clergy, so you’re clear and you have comfort later. And then to document your wishes and Planning My Way gives you that opportunity to really complete and think through what you’d like. This is an addition to a living will, a will of any type, or a health care proxy or a trust. This is specific to what you prefer, what kind of treatments you prefer. So then you can begin the actual experience of going through the modules. We have a guide sheet section on the site, and it prompts you to choose your spokesperson, identify the emergency contacts that you want to include, make your treatment decisions. You can talk about your wishes and create a personal statement, if you like, which is what Carly did, and her husband Andy Baxter did as well, creating a written letter, a personal letter, and signing it to really make clear, yes, this is what I choose. And even up to the planning of end-of-life arrangements, my own mother was really into end-of-life care. She volunteered at hospice, and she had an advanced care plan, and I was stunned, actually when we referred to it, because I had no idea how she wanted to handle her remains, and her idea of how she wanted to handle it was much different from mine. So I was really glad that she had that message left behind, and I was clear and I was calm, even when I wanted to rebel against her choice, I couldn’t because this is what she wanted. So it’s really beautiful to honor our lives in this way, and to face the fear and to understand, yes, I am going to honor the life I lived here by living it to the last moments in the way that I choose. We also have a Spanish version of planning my way on the website, there’s a little button in the upper white right corner of the home page. It says English, and if you click it, it moves to Spanish. So we felt like it would get to an even broader audience this way. And we’re really proud of the fact that the head of language services at Mount Sinai was our interpreter for this project. So we went with the heavy hitters, and we’re glad we did. We feel really proud of this tool. And if you would like more information, or if you have any questions about how to utilize planning my way, we’re here to help and support you. You can contact us at [email protected], or visit my Planning My Way. When you land on Planning My Way, if you scroll all the way down, you’ll have the opportunity to put in your email to join our community, and that is not so we can harass you or sell you financial tools. We are a nonprofit organization. We are here with love to support your journey to the last moments through our tools and through what we offer. So if you decide to enter your email, you’ll be signed up to receive a quarterly newsletter just to update you on planningmyway.org and I’d like to turn it back over to you, Lauren, I’m so grateful to be here. This has been such a privilege to be in front of your community, and I wish everyone a full life.

Lauryn Cooney 14:09
Thank you, Susan, that was so wonderful, because all these things are just so overwhelming, and just can be so overwhelming when you think of them en mass, but I loved that your website and your documents broke it down into very easy, measurable tasks that just felt very accessible.

Susan Gold 14:34
Do you think I could just show the website real quick? Yes, first our site, and it has all this great information, but we wanted to show you that when you scroll down, right here is how you can subscribe to become part of our community, which is wonderful. And there’s all the guide sheets you can print out and resources.

Lauryn Cooney 15:00
I think we can move to Stephanie at MedCure.

Stephanie Evans 15:08
Hi, so my name is Stephanie. I’m a Program Educator here at MedCure, a whole body donation program in support of medical education and research. I’m here today to talk to you about how you can make a lasting impact on the world by donating your body to science. So please hold your questions until the end, if there will be a Q and A after the presentation, and let’s get started. First, let’s talk about the benefits of body donation. When a person chooses to donate to MedCure, they are making an invaluable contribution to advanced physician training disease study, the development of assistive medical devices and less invasive patient surgical treatments. You may be surprised to learn how significant whole body donations are to the advancement of medicine. There is no adequate substitute for the human body. When it comes to teaching and research. There are sophisticated virtual reality machines, plenty of textbooks and videos doctors can watch, but none of these compare to the human body. The pandemic caused a dire shortage of medical cadavers, but the need for body donors didn’t decrease. In fact, the need is even greater now and growing, and organizations like MedCure exist to ensure that that need is met. For example, if a clinical research group performs a study on osteoporosis that requires 10 female femurs, med cure will procure, test match and prepare the specimens for them. If that program were to try and obtain the 10 femurs on their own, it could take them decades to get potential donors registered to donate, and then to have those donors pass away. And since the research group doesn’t have the means to arrange long distance transportation for a donor at the time of passing they’d only have a narrow pool of local potential donors. So thanks to organizations like MedCure, who specialize in facilitating body donations from most states in the US, that clinical research group can get access to the donated tissues they need to perform their study within a few days. Many people share the desire to help others after they’re gone, just like those who sign up for organ donation on their driver’s licenses, while organ donation is seen as a selfless, altruistic gift of life, the public remains largely unaware that whole body donation is even an option for them. Most are also unaware that not everyone will meet the conditions necessary for organ donation when they pass, or that many people who aren’t eligible for organ donation might still be eligible for body donation. For example, unlike deceased organ donation, body donation does not require the patient to be pronounced brain dead for them to be eligible. So if you aren’t eligible for organ donation, except for cornea transplant, perhaps body donation offers another way to make a lasting contribution. However, it’s important to note that if someone is a candidate for transplant, donation, saving a life immediately takes precedence over research and education. Some people choose whole body donation because there are no costs associated upon acceptance. We cover all donation related expenses, including removal and transportation to the lab. Cremation, the option to have cremated remains returned to the family, or memorial scattering here in our ossuary in Oregon, and one certified copy of the death certificate. Since the average cost of funeral expenses is between four and $8,000 I’m sure you can see why some people might want to avoid it. Another thing that we offer to donor families if they request it, is what we refer to as the family letter. This letter will let them know how their loved one’s gift helped benefit medical science. We find that a lot of families do want this letter as it can help them find closure and reassure them that their loved one’s gift was worthwhile. MedCure is proud to be one of only seven organizations in the US to have achieved accreditation from the American Association of Tissue Banks for all four of its facilities. AATB associate accreditation is one of the highest available in the industry, and it is voluntary. The AATB set standard for quality, safety and availability of donated tissue medicure is committed to meeting these high standards, and we are proud to be recognized for our efforts. I want to take a minute to explain why that’s so important. The AATB ensures that any organization they accredit operates legally and ethically and that it will treat donors and their families with dignity and respect. The AATB sets standards for quality and safety to help protect researchers and educators from the risk of infectious diseases. They also ensure the traceability and transparency of donors to their families throughout the donation process. This means that, with an accredited organization, families can be secure knowing that their loved one’s gift truly is going to benefit a legitimate medical research or educational program. Accreditation for whole body donation programs through AATB was first offered in 2014 and is completely voluntary to ensure that we are adhering to the highest possible standards. MedCure chose to pursue accreditation as soon as it was offered. There are currently only seven whole body donation programs in the US that have achieved accreditation. No matter which program you choose to donate through, we always highly recommend that you choose an accredited one. For more information on accredited body donation programs, you can visit the AATB website at www.aatb.org One of the questions we get most frequently is who can be a whole body donor? The good news is that most people who wish to donate are eligible. MedCure has no upper age restrictions and can accept donations from individuals with a wide variety of medical conditions. The most common reasons for a donation to be declined are diagnosis of or exposure to certain contagious diseases such as HIV or AIDS, hepatitis B or C, active tuberculosis or Creutzfeld Jakob disease, aka Mad Cow, being extremely over underweight at the time of passing, any history of illegal IV drug use or other illegal drugs excluding marijuana, prolonged periods of homelessness, incarceration or institutionalization, lack of a social security number, other forms of government issued ID, or lack of someone capable of consenting to the donation. Next, I’m going to tell you how to register your intent to donate. There are two ways to go about it, and they’re both fairly simple. The first is by filling out the body donor registry form on our website. The second is by filling out consent forms and sending them in via mail or email. We’ll talk more about consent forms and how to fill them out in the next slide. Once a person has registered with us as a donor, we will send out a welcome kit that contains a welcome letter, an informational brochure, a Terms and Conditions Statement and two donor cards if you have registered on our website. It will also contain a consent form and vital statistics worksheet. We don’t purge our files, so there’s no need to call us unless it’s to update your information after a move, a name change or change a phone number. If at any time you misplace or damage your card, you can call us and we’ll send you more. We recommend signing it and keeping it in your wallet or on your refrigerator. You can also give one to your family or your doctor or the executor of your estate, whatever you want to do with them. We can also send you more if you need them. Consent forms are not legally binding and create no obligation on your part. However, you can rescind your registration at any point by calling or emailing. Now let’s talk about consent forms. Our consent forms are two pages, usually front and back, and is important that they are filled out properly. These are legal documents, and MedCure staff cannot correct or alter or enter any information on them, so if they’re not filled out properly, we will have to mark them as invalid and wait for new ones. This can stall the donation process, cause extra work, which no one wants. So to avoid this, before sending the forms, verify that the form is filled out in its entirety with no unknowns or blank fields, commonly missed fields are consent or witness signature fields, date signed, time, signed and check boxes. Consent forms do not need to be notarized, but it should be signed by two witnesses, one of whom must be a disinterested party. This can be anyone, a mailman, a friend, a neighbor, as long as they are not blood related or a spouse, the witnesses must both sign after the consent or the name must match on all forms and should be the legal name on file with the Social Security Administration, and should not be a nickname after it’s signed and filled out. You can submit the form to donate at MedCure.org, or fax them to 503-257-9101. If a donor is on hospice or has been given a life expectancy of six months or less, we would prefer that you call us before filling out the consent forms. When the donor or their family member calls us, we will need to conduct a screening to ensure they meet all the eligibility criteria. The screening takes about 45 minutes to complete, and it’s advised to have the best medical historian for your family to complete it. Although donation acceptance cannot be guaranteed prior to death, we can collect information in advance and communicate any anticipated problems, such as weight gain or weight loss after the screening has been completed, the donor donation coordinator will advise the donor or their family on how to obtain and complete our donation consent forms if they haven’t been completed. The only people who can legally complete the forms prior to the donors passing is either the donor themselves or someone who has a valid healthcare power of attorney. If someone is attempting to sign the consent forms as the healthcare power of attorney, we ask that they first submit the HPOA forms, the HPOA document, to our donation coordination team for review to determine if it’s valid for our purposes. Before the consent forms are signed, we will look for specific phrasing regarding anatomical donation. If the donor or valid HPOA isn’t available to sign the consent forms, the forms can be completed by the legal next of kin after death has occurred, then the donation coordinator will explain to the donor and their family what to do at the time of passing. Now I’ll go over what the process looks like when a registered donor passes away. Ideally, we will want to begin the registration process prior to a donor’s passing. However, this isn’t always possible. If the family is unable to begin the process prior to the donor passing, we will start a registry with the next of kin at the time of passing, the family or a member of the hospice staff should contact MedCure as soon as possible by calling our toll free number at the bottom of the screen. We will want to make sure that we are the first call made and not a funeral home, as doing so could result in the family being responsible for the expenses or even possibly a decline. So that’s really important. The donation coordinator will need to collect some information from the hospice nurse, hospital nurse or emergency responders. If the donor didn’t previously register with our program, then we will need to go through the eligibility screening. If the screening was already completed, they will simply verify that there hasn’t been any new diagnosis or major changes since then. Once all of this information has been gathered, we will confirm that the family has either submitted consent forms already or understands thatvthey need to submit them within the next 24 hours. Without these forms, we cannot move forward with the donation process. Next MedCure will contact the funeral home in the donor’s area to make transportation arrangements. We will provide the family or hospice staff with an estimated time of arrival so they know who to expect and when, after the time of passing. There are a few things that your family will want to keep in mind. First is that the one certified copy of the death certificate that MedCare provides will arrive eight to 12 weeks. If your family needs additional copies sooner, they can request them from the county vital records department approximately two weeks after the donor has passed away. If you designated someone to receive your ashes, they should arrive within four to six months of when you came into our care, and about one week before the ashes are sent, we’ll send a letter letting your loved one know to expect them. If your family chose to receive the optional family letter, they should get it approximately one year after you pass. If they didn’t request the letter when you registered, they can still contact us to ask for it at any given any given time, even years later. Another resource we offer to our donor families is a donor memorial page on our website where families are encouraged to share a picture and a story or anecdote. We really love reading these stories, so if you donate with MedCure please let your loved ones know that this option is available to them. we often get asked if you need to mention your intent to donate in your will. You can if you’d like to, but we do want you to sit down and have a conversation with your family so that they know what to expect. Here are some tips for broaching this difficult topic: Start gently. They may want to resist the subject. “I know this might be unexpected, but I want to be open and honest with you about my wishes” or something like, “I’ve been thinking a lot about my end of life plans, and I want to share something important with you”, explain your reasons for wanting to donate, whatever that may be, make sure they know that this is your wish.;Tell them what to expect. This is a great time to give them a brochure donor card, and the back of it has an at-a-glance, instructions for how to make that time a passing call, so they know exactly what to do when the time comes; Give them some time to process. This is heavy stuff, and it may be difficult for your family to think about what life will be like when you’re no longer around. So you can encourage them to call us if they have any questions or concerns, but let them know that we won’t be able to share any any of your info before, without your verbal or written consent; discuss the possibility of creating a legal document like an advanced directive that will ensure your family can make medical decisions for you if you can no longer make them for yourself. For more information on advanced directives, you can check out the resources page on our website, or contact a local aid office near you. You can also find a simple advanced directive at fivewishes.org which our coordinators frequently use, and they’re very familiar with it. Thank you so much for taking the time to learn about this option, and thank you so much for letting me present. Please know that we’re with you and your family each step of the way. This conclude, my part of the presentation. Now I’d like to open the floor to any questions you may have about MedCure or whole body donation in general.

Lauryn Cooney 30:33
Thank you, Stephanie, that was so good. I think we do have a question. Are the forms for the family information or the family information pamphlets available in any languages other than English?

Stephanie 30:49
They are not currently available in any other language. However, if you have a translator, we’re willing to work with them.

Lauryn Cooney 31:00
You guys seem to make the process very easy for the remaining family. It seems like you have all this. It’s step by step, and there’s no, I don’t want to say no stress, but less stress to the family. And that seems wonderful.

Stephanie 31:16
That’s always what we’re aiming for. So that’s good to hear. That seems simple enough.

Lauryn Cooney 31:23
Yeah, for sure.

Stephanie 31:26
Thank you so much for the opportunity to present. If you have any other questions, feel free to email me.

Lauryn Cooney 31:31
Our next presenter is Daniel, from KinCapsule, if Daniel is ready and would like to present.

Daniel Findlay 31:39
Thank you so much, Lauren and great job to the presenters. I feel, like Susan said, very privileged to be part of the panel and also a part of this, of what you’re doing, Lauren, you and the COLONTOWN folks, and the incredibly important, meaningful work that you do. So thanks for putting this together, and it’s a privilege to be here. I will just share my screen. A really important part of life is that it leads to end of life. And the sooner we get comfortable talking about it, the more prepared and the more peace of mind we as individuals, the families around us, and our communities become. So we are KinCapsule: Kin, as in family; capsule, like a time capsule. And it says, “live forever”. That’s our tagline. We’re not physically empowering people to live forever, of course, but we all live forever through our legacy. And someone once said to me that in order to leave your legacy, you must live your legacy. And so that starts as early as possible in our lives. And so the more again, as Susan said, prepping for things pre-need, not at the time of need, when things might be a little hectic and difficult. It’s really great to get ahead of this, because if you’re living your legacy, whatever that is, and there’s no bad legacy, if you’re living it, you can create an incredible story and touch those around you as well. So that’s what we’re all about. And of course, at the bottom, if you see the screen, this is one of the quotes we came across early in our journey, but it’s Amaru Hampate, who’s an African ethnologist, but also a philosopher, among other things, and he’s coined the phrase, “When a person dies, a library burns to the ground.” And it’s so true. Here’s the three founders. Our founding story is in every case here, including my own, we’ve had people who have passed away in our family, and these are grandparents or parents or other people in our lives. But for my family, it was my grandfather. We’re originally from Scotland, and when he came over to Canada, he was leading this incredible life. Had incredible people around him, but he had mental health and physical health issues, and he passed tragically early, and he was our archivist and our historian, our family librarian, if you will. And when he passed away, we lost permanent records of a whole bunch of stuff. And so that just tragic, you know? And every time we talk to someone, every family, every individual, has their own version of this story, right? And Lev, for example, in the middle, he originally from Russia, came over to Canada 30 years ago. His mom eventually was diagnosed with with dementia, with Alzheimer’s, specifically, but when she was a child, her father, Lev’s grandfather, was arrested. This is during the Stalin times, and he was arrested and thrown into a labor camp and executed eventually. She was so traumatized that she did not want to share anything about the family to even her own kids out of fear that this same fate might come to her and her family, even even though Stalin was well gone by then. And so again. Fast forward, she passes away with Alzheimer’s. And when he went back to pick up boxes of stuff, pictures, videos, documents, he didn’t know who was in the pictures: what, and who are these people, when the pictures were taken, why they were taken, etc, etc. So he also felt this loss. And then Utku, who is our Chief Technology Officer, he actually had cancer, and it’s in remission now, which is fantastic. He’s a young guy, so this is not something that older adults only deal with. This is something that anybody can deal with. And he has an incredible story to tell, but he has a new appreciation for his life, and he’s lost people with cancer in his family as well, so his family has cancer in their history. So this is all a passion project for us when we when we created KinCapsule. The problem that we’re really focused on is the life story and the legacy component of our lives, and end of life in particular. But that’s everything from life experience, lived experiences, challenges, navigated wisdom, life lessons, and our ‘what’s our legacy all about’? And so that’s what we help people with, is think of us as sort of a legacy enablement. And so it’s not a small problem. Not only is it a problem for the people that we’ve spoken to. Hundreds, maybe 1000s of people, and our partners across healthcare, in senior living, retirement funeral services and cemetery healthcare as a broader umbrella of folks, there’s a number of studies. Go look them up, but here’s just a few of them. 70 plus percent of North Americans, I would say, in anywhere you look on the planet. In fact, I think that it’s probably broader than North America, – but regardless of wealth or socioeconomics or any by any other measure, people want to be remembered for their memories and their legacy and their values and their experiences. That’s the most important thing to people. So I hope – it’ll be interesting to take a survey on this call to see how people feel about that – but I would imagine that you can’t take anything with you, and although leaving financial legacy to loved ones is very important, that’s why we help you live forever, your wisdom and your life lessons and your experience are intrinsically important. This is not just KinCapsule. There’s a ‘we’re all in this call together’. There’s a whole community, a global community of folks who are passionate about this. But there’s also the call from the hill, and so the former Surgeon General, Vivek Murthy, as well as senators across the US and across the world, there’s a loneliness epidemic as well, and that as well leads to a lack of leaving that can get in the way of you leaving your legacy. Some people feel like their story doesn’t matter. It’s not interesting or exciting enough, or they don’t have anyone to tell their story to. And so part of what we do too is is building this community around connecting people around meaningful social connection and intergenerational connection. So we have some, – many of our partners, our student bodies. – We were partnered with the Foundation for Social Connection, with the Legacy Project, with Telegacy. These are all nonprofit organizations that have students and/or volunteers connecting with folks to encourage storytelling, which not only does it help you leave your legacy, but it’s incredibly therapeutic to review your own life and talk about things, and you can unpack things and process things and grieve if you need to. So storytelling is not only the way that we as human beings communicate every day, right? Like we’re doing now. We’re sharing stories with each other, but it’s the way that we really communicate more broadly as a human species, and so it can be very powerful and therapeutic as well. So what did we do? What is KinCapsule? So KinCapsule at the core, is a storytelling and legacy enablement platform. Everything that we talked about in terms of things getting in the way of telling your story, this is what we’ve done. And really we’ve purpose-built this to create and preserve a life story and to drive, as I was mentioning, meaningful social connection. Not just merely connecting online. That’s not meaningful. And in fact, there’s toxic outcomes that come with that. The whole focus here is meaningful content, and we’ll show you examples of what that is in a moment, and building a community based on trust. And again, I’ll get into how we build trust with with the folks in our community as well. So, I will show you the platform, but just at a very 30,000 foot view. You can create things. You can store things in folders. You can build a network with folks that can be friends and family or what have you. There’s forums. If you have a story that you think is sort of public worthy, and you think it might inspire someone, then there’s public options for that too. There’s a map. This is the really fun part. Build your whole life on a map, is a very interesting way to look at yourself. I have gone through this journey myself and with helping other folks in our communities to build these out as well. And it’s a fun and interactive way to build that. And there’s a family tree too, it’s a very cool thing. We just launched the ability to create a book. So as you’re creating multimedia content, it could be videos, pictures, audio, text. When I say audio, I mean voice notes and so on. Pictures are important. They’re very precious, but they’re really static, still shots of moments in history. So if you don’t know what the who’s in the picture, why the picture was taken, where it was taken, and etc, etc, it may not be as meaningful to someone else as it is to you but with KinCapsule, you can leave a voice note to really bring those pictures to life. We also have the QR code. The QR code can go on a tombstone, it could go on an urn. For example, we’re now very early stages, but we’re starting to work with cemeteries. We want to turn cemeteries into whole encyclopedias of life stories how we’re doing that is we’re getting QR codes to go on the tombstones, but with the book creation as well. If you have a video or audio file on the page in that story, you’ll have a QR code. So while someone’s reading the book, they can just scan it with their phone and it’ll make it multimedia as well. So, just some fun. End of life is heavy topic, but if we embrace it and it’s a part of life and we celebrate our life, then this is a fun, creative, co-creative thing that we can do. I already talked about this, so I won’t spend too much time here, but just trust me when I say this, I have gone through this myself, and there’s tears of joy, of processing of grief, going through your own life and going through that of someone else’s. I recently built an in-memory account for my grandparents with the whole family, and I invited my cousins, my nieces, my nephews, my parents and their siblings, and we all shared our stories into a private family folder. And then you just click a button “Create a Book”, and it has this really cool book that the whole family created together, and it was just an amazing experience that brought us all really close together as well, even closer. And that’s it. Feel free to scan that off if you have a phone in your hand, scan the QR code. It’s on Google Play and App Store. Should you be so interested. There is a free account. Again, to quote Susan, we do have paid accounts too, but we wanted this to be accessible to everyone without any barriers to getting started. There is a free version of this as well. Feel free to sign up and connect with me if you’d like to as well, and I’m happy to, offline. If anyone wants to connect with me, to have a look at the app more in depth, or if you have any questions, I’m happy to do that as well. And just with a couple minutes left that I have here, I’m going to quickly just show you what the app looks like, starting with the map. So, I’m logged in, I’m in KinCapsule, and I’m looking at – you can see here there’s a few options you have in your module panel here, and and I’ll show you that this is really easy. I’ll show you what all of them are very quickly. But this is the map. If I hover any of over these stories, I can zoom into any part of this. Let’s say this is grandma’s life, and I want to see what the heck was grandma doing in Germany. Well, that’s where she got her irresistible Sugar Cookies Recipe, right? And there’ll be a whole story you can see here, if I zoom in on this, you’ll see on the right hand side here, just the stories that are in the view, and I can open up the story of grandma’s irresistible sugar cookies, or whatever the story happens to be. Here’s the picture, and here is the story of grandma here. So just to show you, this is a really cool thing that anyone can view in your map if you allow them to. You don’t have to have your map visible. And so that’s just one way of viewing the story. If I click on ‘home’ here, you have your own timeline or feed. You’d be familiar with timelines from social media, for example. And you can see, these are multimedia stories. On any of your own history or someone else’s history I can open up a story and have a closer look. I can ‘like’ and comment just like you would on social media, etc. So I’ll just pause for a second, one of the main things that we do to build that trust that I spoke about in the first few minutes of my presentation here, you own 100% of your content, not us and you. We have a legal commitment to you in our terms and conditions that we can’t use, sell or share any of your information as well. So this is truly your own private vault of information. We have some users that have folders. So you can organize things in any way you want. And you can see here there’s folders at the top. You can organize anything you want and and share. You don’t have to share anything that you don’t want to. So this can be your journal or your diary. People have folders called Confessions. This is encrypted. It’s very safe. It’s at your own risk. I would create your own folders, but it’s a very secure and private environment where you own 100% of your content. So you can be as personal as you want. For example, secret family recipes. And here’s all of the family recipes. This could be a folder that has your family and everyone in the family. You could add a recipe, just building that family library of of content for future generations. So, forums and folders: You could create a private forum or a private folder. For example, here’s Gwinetta, and Gwinetta has her family in this forum. It’s a private, by invite only forum, and everyone can share their stories here. And this is just a look at Gwinnetta’s life as well. So just lots of interesting and easy ways to use the app. And creating a story is easy. This is the last thing I’ll show everybody, but creating a story is every story starts with a title. What’s the story about? On social media, I might have friends over and make this really amazing gourmet pizza and pair it with this beautiful red wine, and life is good. And I take the selfie and I post it here, you’re going to tell different stories that are related to your life story. For example, your name, Lauryn. You might be named after someone in your family, or maybe there was someone who inspired one of your parents to name you this name. I have a whole story behind why my name is Daniel, and if I didn’t, if no one asked me that question, what’s the story behind your name? I’d never tell anyone, and it no one would ever know, and I would pass away and it would be gone forever. So we have all types of different stories here too that guide the user through telling their whole life story so it could be baby. And we have all these different stories under here. So if you don’t know how to tell your life story, the app will prompt you and guide you through the process as well. So that’s it. If you want to tell your life story, which, believe me, if you haven’t thought about it, you’ll want to, and the people around you will want you to as well. This is an incredible way to reconnect or connect with people and leave something absolutely priceless and precious behind when that time comes. But again, it’s not all about end of life. This is your whole life journey and a celebration of your life story. So the sooner you start, the better. And with that, I will pass it back to you, Lauryn, and I just want to thank everyone for their time and again, it’s an honor to be here and let me know how I can help.

Lauryn Cooney 48:45
Thank you, Daniel. When I talked to Daniel previously, before this, you can tell the passion, and I think that that shows in this whole not only presentation, but product. My favorite part, the book that you can make and the prompts, because a lot of companies, you have to pay for that if you want to do it. And here’s Daniel offering it. So we did have a few comments. One says. “Brilliant, Daniel”. And so from the heart, I went to a Halloween cemetery tour last Halloween in my small, rural town in Montana, and was profoundly surprised at how much the live reenactments hit me at this site of the deceased tombstones. It was amazing. It would be amazing to hit a QR code at any cemetery and learn about the human being’s life experience. Thank you. And it was personal. Storytelling is so impactful to future generations because of the things that we learn from our lived experiences. When we share those experiences, our lessons are passed along and can make a difference to others. So I really loved those two comments, and I would say you don’t even have to start with a difficult topic. I made a video and started with just my favorite things, and that’s pretty easy for me to regurgitate my favorite flower, my favorite food, my favorite movie, my favorite music, all those. And so it didn’t make it so heavy, it just made it nice and like the kids say, what kid wouldn’t want to know the favorites of everything. So I would encourage you that if you at all find this interesting, that you start looking into it, and we can do some more stuff in our Planning Plaza group as well, because Daniel has graciously offered his time and experience and anything that we need.

Daniel Findlay 50:45
So if the panelists or any of the audience, want to reach out to explore, if you want to see the app, you have any questions, I’m happy to to help out.

Lauryn Cooney 50:54
We could switch to Mari with PALTOWN. Hi, Mari. Thank you for joining us.

Mari Ulrich 51:02
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.

Lauryn Cooney 57:21
Thank you. Mari, I like that. I love that because I didn’t know it existed until I started working on this presentation. And so it’s such a great option for families like you said. And what you said about the circle, it brings the circle around. And I like that, and being able to give back to an organization that helped the person you know, so much. We will just roll into the next presenter. We have the International End of Life Doula Association up next.

Omni Kitts-Ferreira 57:51
Thank you, Lauryn, what a wonderful way to meet so many incredible organizations doing this work. So just glad to be here. My name is Omni Kitts-Ferreira. I am the Director of Education with INELDA, which stands for, as Lauryn said, the International End of Life Doula Association. I’m here to tell you a little bit about what end of life doulas are, what that role is, how it might support you, and then some workshops and offerings, even a directory that we have at INELDA that might be a useful tool for you all to have. A little bit about INELDA. We are a member-based nonprofit. We have been organized for about 10 years, which is really exciting. We are one of the oldest and largest end of life doula training organizations. And our vision is really, it’s a big vision, but we really want, and support ways in which anyone can have accessible, equitable and compassionate death care that affirms them, so that when they die, they feel a sense of self, they feel that their autonomy has been honored, and there is dignity in their death. We do this in a number of ways, but primarily we train end of life doulas. We teach anybody how to support folks as they journey towards end of life. And being a doula is a unique role. We are not part of the family. We are not part of the medical team, and so we stand in a space that really is truly, truly for the support of the dying person, and also adjacently, their circle of care. So whoever they define as their inner circle, their people, their family. We also work with different facilities, clinical spaces, and we work to integrate doulas into healthcare models, to really broaden the way in which people are cared for at end of life, and to address some of the systemic gaps in health care that exist and that have existed for a long time. I do like to show our team, because we are a really multi-faceted team. We have folks who come from backgrounds of nursing, chaplaincy, social work, some are volunteer coordinators at hospices, educators. We have people from many different wheelhouses, and all of this is supportive, because anyone can be a doula. And really truthfully, there is a point in all of our lives where we step into the loss of someone that means a lot to us. Even if we are not trained doulas, each of us in our lives, we face folks who die, we lose the people closest to us, and so we really do believe that an education around end of life and how to support people in that space is important for anyone and everyone. Everyone can do this. Here is our definition of what an end of life doula is, and I’m going to stop my slides in a few moments, just to connect more personally with you. But we define a doula as a non-medical companion. I like the word guide, but guide also has this feeling as if we are leading the way, and that is not true. The person who is dying, the person who is facing a terminal illness, they are the driver of the process. We have some knowledge about end of life, and so we really walk alongside people. We work to understand what their preferences and desires are, and then we help codify that. We help communicate that. We can sometimes be an echo for the things that are most important to you. We support the self determination and the autonomy of the person dying. So what does that mean? That means we trust you. We trust that you know what is best for you at end of life and throughout the decision making. We start with what you know to be true, what you are asking to have, and then we work to amplify that, to create as many resources and supports for you and for your circle of care to move through this journey and this process of end of life as easily as possible. I kind of just said this, but I think it’s important to say I am also a hospice nurse, and I see I see folks every day, their families around them, and I find a lot of times that even if they were expecting this, they are often unprepared. And there are many spaces in which, when someone is dying, they no longer can make the choices for themselves. They can’t speak out what they really like, what they want. And then you see that fall to the family, and you you see it fall to their decision makers, but they haven’t had the conversations ahead of time. And so then they’re making decisions, really, without knowing what their loved one wanted or wants. And so that’s a hard place. So when you bring a doula into your life, that can be way before we are at end of life. We can do this when we’re young. We can do this when we are not living with disease, or if we are living with disease, doulas can just hold space for you to talk about the things that are most important to you whenever you come to your end of life. And so we really help not just the person dying, but as we have those conversations, it supports the whole unit, so that when you arrive in those places, the family goes, “Oh, we have had this talk, I know what they want here,” and that takes some burden off of them that they don’t feel like they made the wrong choice. We center around the dying person. So again, what you say goes, and that is important, because there will be folks, maybe in your life, who disagree. The doula is not there to disagree, to convince you otherwise, to sway you in any direction. They are really just there to honor the choices that you make, because this is your journey. No one else gets to make it. Some of the things that doulas do. People ask that all the time. “Say, what do you do?” Well, first and foremost, we’re just with you. We’re like an emotional support animal. We’re not there, again, to convince you, but just to be another person in the room who isn’t telling you what they think you should do. We’re someone just to be present in hard conversations and to be witness to what you’re going through, and that can mean a lot. We hear that. It means a lot to the folks we support. We listen with our full self. We we listen when even things merge, like, “Wow, that change in my prognosis was not expected. What am I going to do now?” Right? We are there in those moments when all the little losses are happening, because the loss doesn’t just happen at end of life in the moment that we pass, it is happening all along the way. So to have someone who witnesses your journey. Is like there to just say, “I see you. I am acknowledging. I am validating that what you are moving through can be really empowering as you move through some really difficult stuff”. We certainly help with end of life planning, so using even some of the resources shared today, we can help scribe those choices. We can gather stories. We can collect some pictures. We can say, what is this picture? And so, utilizing a lot of what is shared, but we can be that person who really works to gather it, codify it, write it down and really help that process emerge. We have a lot of community resources. So as an end of life doula, I have a very rich resource list. I know the laws in my state. I know what types of burial options there are. I know really fun things like, who’s a florist who makes these huge blankets that cover caskets. As a doula, I’m that person who really understands the death care ecosystem of the space that you are inhabiting so that you have a lot of support and creativity in meeting the end of life. We have skills and tools to help with comfort through the process of dying, and this is non-medical but mindfulness exercises, breathing exercises, guided imagery, different ways in which to really help your mind process and move through these different spaces. And certainly we are there to educate. We educate your family. We say it’s okay that breath change is expected. We know that we may see something like this. Just we can do that contextualization, that education piece, which can be very useful for the person who is dying, and then also for their loved ones, especially as as they move closer and closer. So we really just help to navigate this process of end of life. And remember, end of life is not just the moment. It is a vast spectrum. All of us can do advanced care planning, all of us can have these conversations, and so I’m going to share my screen one more time to share something that might be of interest. This is a workshop that we have called Living with Our Dying. I really like this title, because we are all living with our dying, whether we have a prognosis or a diagnosis. We all are living with our dying. We are in that space, and we are not sure when the end is here. And so something we do as doulas all the time, is we create space for you to talk about it. Sometimes it’s really hard just to say, I want to talk about dying, but I don’t want to upset so and so and so and so. The title of this fair is Taboo to To Do, and that really is something that happens around end of life, like, don’t talk about it. It’s okay. You’re going to make it. But guess what? We all don’t make it. We all die, and we really feel like as doulas, it’s okay to talk about it, and in fact, when you talk about it, you start to really understand what is important to you and how you want to live your life now. So this entire workshop is dedicated as a space to anyone who wants to consider their mortality and we use this quote a lot, but Stephen Jenkinson, he says, “Let the news of your death transform you”. And we really find, as we teach people every month about end of life, that when you allow your mortality in, it reflexively reminds you that you are alive now and that there is opportunity in that space. And so this is a great little workshop. It’s three hours just to dive into that and engage with yourself, to be curious and discover with yourself. So for end of life doulas, we have this workshop. And then the last thing that I’ll say is, maybe you want to meet a doula, maybe you want to talk to a doula. So over here on our website, on the bar up here, it says, Find a Doula. And we have a doula directory, and you can search, and hopefully it pops up, but it will you can do proximity search so you can look in your area. I will say that doulas can do stuff online as well, but sometimes it’s really nice to have someone face to face and be actually in the room with you. So it is up to you how you want to do this. We have trained doulas in 56 different countries, we have about 9000 trained doulas, so we have a lot of doulas. So look at this little doula directory and you can find someone that you might just want to start a conversation with. I will put my email in the chat so that you can reach out to me if you have questions or need help navigating our site to find that workshop or a doula, I’m happy to connect you. So thank you for letting me speak.

Lauryn Cooney 1:11:49
Thank you that was so informative. Because like when you and I talked, you think about a doula and you think birth, but how wonderful to have somebody provide a similar service at the end. I really like all the listings, because even, I mean, I had no idea all that is encompassed in a lot of the doula services and what you’re trained to do, and what a gift for people that are trained as doulas. Our next presentation is from Amy at the Hospice Foundation of America.

Amy Tucci 1:12:28
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.

Amy Tucci 1:34:31
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.

Lauryn Cooney 1:46:35
Thank you. Next is Danni, from the Dream Foundation, and I wanted to end on more fun. I would say not that all this wasn’t fun, but a less heavy topic, and just something a little uplifting. So she’s going to tell us what the Dream Foundation does.

Danielle Cordero 1:46:52
Thank you, Lauren, 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.

Danielle Cordero 1:55:45
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 2:07:48
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.