good evening everybody i mean o'brien and we're back again with meet the experts really pleased this evening to have two guests here from the d n a of men in grand isle counties from the end of life care program angel means the director of the program and christine where nikki who is the director of marketing christine is also from richmond so for the richmond local folks have you have you here welcome but the topic for today is called start the conversation and even the backdrop you know i am struck by in life we plan for everything college marriage children retirement but we seldom plan for the and and so when i saw that you were doing this program and there's been so many conversations happening around the state about death with dignity and end of life issues i thought it would be a great opportunity to bring you here invite you to talk some about the program that you're doing how it works and maybe we just start with the question that when i've talked to people in the community about the program and doing the program tonight they have their own like what's the difference between hospice and palliative care what what does it mean you're the director of end of life care programs plural and i wonder if you might just talk about what those programs will end of life care programs at the d n a is really an umbrella title for a group of programs that care for people who are approaching or at the end of their lives and that is as you mentioned our palliative care program and then also hospice which is our oldest program of the v n a we were one of the original hospice programs that formed together to pilot what is now the medicare hospice benefit so usually when you think about hospice you think about a defined program that cures for people primarily in the last six months of their lives the palliative care program is an offshoot of that program that really helped us expand hospice type care to people long before they had a six month prognosis people who were who had a life threatening illness who were still seeking  aggressive kinds of therapy and treatment for that illness and didn't really know what the lifespan was with the prognosis but needed the same kind of support that we were already providing in hospice and that is  and then also under end of life care we have the vermont respite house which is the one and only hospice facility in the state of vermont and it's a thirteen bed home in willesden and then we have the madison dean initiative which is a volunteer driven program that really helps provide community education and outreach about into life we also have a pretty extensive bereavement care program which include to children and family bereavement camp called camp no one of my colleagues from the house of representatives is a singer and a great great in the hospice singers group so that's the topic for our program tonight to start the conversation and i wonder if you might just give us the highlights on and it was done in response to families coming in telling us either after they've experienced a death on hospice from one of their with one of their loved ones saying things like we wished we had known about ho or other family members more people need to know about this we were also struck by the fact that mont does not utilize hospice at a rate comparable to sit dates like ours so although many vermonters in fact were among the highest in the country use home care so they have skilled nurses therapists come into the home and support them following illness or surgery not many use hospice which they can receive in the home so we felt that because we had people telling us they felt that more people needed to know what they wish they had no sooner and because we could see and the data that not a lot of people were using it we looked to the research to say why and although there's no specific research in vermont pointing to an explanation as to why  many other states like ours such as maine found that public education was one of the best ways to get people to just be more aware and help change any misunderstandings or misperceptions so  we actually borrowed the concept somewhat from other state initiatives that were done to try to help inform people about it and try to do it in a way that was not  i guess apologetic or in done and in the like a kind of quiet way we want to bring it forward and encourage people to just really talk about it our primary goal was that we wanted people to have conversations about and what their wishes were or what questions they had because that is really we feel one of the best ways to make sure preparing for this interview you know reading through the booklet called start the conversation would you have an example of i know that you have materials i want to definitely give the plug for the website which has all of your materials on it that's part of our conversation here we want to just be passing resources out people through the web or can someone call you and get that absolutely yes yes they can call us and we can put the conversation guide and the this is comprised of this information inside that follows it could be used in any way you can follow it page by page which is going to explain to you what hospice care is it going to talk it's going to talk a little bit about palliative care and you mentioned one of your questions was the difference between hospice and palliative care we got that question a lot too  so we created a chart that shows the difference on some of the aspects of palliative and hospice care but jumping into this topic is scary for people and so we created a borrowed actually there's some of this is from other organizations that have gone through this process as well including the vermont ethics network who has done a significant amount of work in the state on this topic in educating people  but we have worksheets just proposing different scenarios like what if you were in a wheelchair well what if you could not walk around and sew and set up on your own you know what level of support might she wants helping people to understand the real life situations that are happening and so that they give them a little bit of context for the discussion there's some examples and some  suggestions on how to get past the resistance had a lot of people say to me i try to bring it up and my dad leaves and i'm afraid to talk about it i don't know why i do that  have other open ended question yes and one of the forever it's yeah hacket of it information yeah i was thinking as i read it it's useful just individually to read as a as a tool for information but also then i could imagine that having it as the point of like the questions in there that you could actually ask saying earlier about my family like well you know how are we to talk about this and here are some of the tips and questions that you could use to begin the conversation but also the kinds of things to consider and one thing for me and i wonder if you could talk about the who your target audience is for this because i've always had in mind you know what i think end of life probably of care that's you know for people like who are in their babies are ninety use not the certainly for people who are in their twenty's or thirty's or forty's and i wonder if you could just kind of talk about how that that who it is that you were hoping to be having the conversations right well we really feel that anyone over the age of eighteen really needs to have this conversation yeah yeah and why is that well i mean that's one example a couple examples that we some people might recognize from media when they were all young women who decisions for end of life care were fired out in a court or in media and there's really no crystal ball that anyone can look into and know what's going to happen so it's really important that all of us know what our options are you know how to access care that's available and being able to put th siller take that kind of discussion with the family but that's a very challenging time to be having that discussion and we're talking about limited time when it really should be a time to focus on you know what is the most meaningful for them in  hello welcome to the program you're on the air do you have a question i guess i have more of a comment sure i really welcome this conversation and i think it's important for younger people to understand that important conversation can happen lots of times over a lifetime somebody might write in their thirty's or forty's significantly change later on and people shouldn't worry that they should express something now you know you can always change your wishes are you trying so it's a really really good point  then really when you think about all kinds of what is played right now the answer to the question is different when you're forty than when you stephen when you're ninety yes so what is your advice about that i mean do you think people should put something in writing and have their advance directives and then just revise it periodical in your salute i think what's most important is the part around really identifying that person in your life and trust who can be the spokesperson for you when you're not able to if you are ever in a situation where you're not able to speak for yourself those first and foremost and then you do need to have going conversations with that person and that person can change over your lifetime and you need to make sure that if that happens that you're revising your advance directive to indicate that vermont has in advance directive registry that will actually help people with that process so when you complete your advance directive and you submit it to the from advance directive registry you can find information on our website they will send you every year a reminder that you have this it's there and do you want to they don't have to know that they could have been in florida on a vacation or maybe there they're living in vermont in the summer and winter in florida they'd they're probably does need to be somebody to indicate you know they have an advance maybe also call back  what what how are you measuring the success of the program and what are your indicators for we are looking at people going to the web site and seeing how many people access that we also do community presentations and other done throughout the state because it's our d n a as well as our sister b n a and agencies and state and we look at to see how many more people might be start you know using hospitals and ultimately if there's more people accessing the specialized end of care group called welcome to the program do you have a question so i would probably if you're able to work with her and communicate with her have the conversation with her it can be by phone it can be in person if you're able to go visit her and then pull her primary care physician  conversation and make sure that he or she is a part of knowing what those advance directives are and i would definitely start with making sure that she has a chance to name who she would like to be her agent if she's not able to speak for herself so thanks for your call i think i actually may have i think i have actually taken your question and i hope that we answered  answered it satisfactorily when you do have someone who is further along in the process and i think that advance directives as you said angela  becomes a more complicated challenging thing so part of the you know intention here with this educational program is just as to help us all to back up a little bit and say you know where when you're not critically ill yeah so you think you know because like you mentioned in your situation you have three children and if you didn't have that conversation with them and you weren't able to communicate yourself and the three of them are left with trying to make really challenging decisions for you on your behalf and the three of them may not agree on what direction to go now and that can be a very challenging  your colleagues actually representative phil frank and jericho and we went it was one evening kind of like this and at the jericho library the deborah ross library and people were invited to come in and we and when does it start and had i access it and one of the things we want people to know is that hospice is available in this community and it's provided only by medicare certified hospice providers of which the v a is a hospice and that you can ask about hospice and is hospice right for me or my loved one if a physician maybe doesn't bring it up if you have an understanding of it we want people to be empower to feel like they can say i want to know more about my options such as palliative care hospice and we also want people to know that it's fully covered by medicare and it is a benefit that we all  get and correct me if i'm wrong but regardless of age right like in terms of there's there's the medicare benefit would which would sort of permanently if you blow over sixty five and then in this state medicaid also provides  resides would prefer to do so they have adequate support to be able to do that but there's hospice provided in hospital hospice can be provided in nursing home community care and of course hospice facilities like   pretty intensive kind of support kinds of support interventions at the end of life that they get that care in the home because they don't have a caregiver or a neighbor or friend who can be there with them so they really  the many people as a as a state rep when you knock on people's doors here in their homes and you know on the ground with people many people really do prefer to stay home and so the services that the v n a offers  the hospice services for people to be able to stay is it a requirement that there is someone that's a primary caregiver it's not that black and white i mean it depends on the functional status and the stage of the illness of the person's and if they're not able to be alone safely then it is very difficult to carry out a home care plan without someone to support that because we're very much about educating caregivers teach them how to provide the care and we're not there because our services are intermittent services but we will admit someone to hospice who's fairly independent in the beginning as the progress really start putting a transitional kind of care plan in place and we can do that really well through the d n a because we can tap into other programs at the d n a to pull in like personal care attendant from our long term care program or maybe maybe private care from a private program and really help build that care plan sometimes that's enough to keep someone in the home without a primary caregiver sometimes it requires them to move into a setting like assisted living or the vermont respite house where they can get you know around the clock care so we have a few minutes left and i wondered what you would like the takeaway to be for people really what what's the driving home message now we plan for a lot of things we do big planning for many big events in our life and we don't really necessarily most of us anyway don't think about the end of life for ourselves we might think about it for someone else in our writing with well we do presentations in the community so one of the things that we invite people to do that if they have a church group or a book or if they belong to maybe a women's group or a business group of some so are we can come and bring this information and these resources to their groups so that's one thing if somebody wants to call us they can call the v n a at six five eight one thousand nine hundred and let them know that they saw this program and they'd like to know more we can also provide materials so that people will use the materials as you did to sit down and just look at it and it's going to start people thinking and i love the first caller's comment in that it's a process it's not like  schedule a time like with your parents and sit down and say ok we're going to have this conversation and you can check that off it's ongoing it's something that we want people to continue to talk about because it will change and so have conversations  the conversation vitti dot org you can get all of this information in the conversation guide and then you also get the links to ethics network which has a construction instruction booklet on can do it combines two things in vermont it's naming your health care agent which is a job pointed out is really if you do nothing else do that but that does require writing that down and getting it properly witnessed and that it has some other information and that where you can describe generally what your wishes are and there's a form that helps you do but you can also complete some of these resources and staple that on to i hope that we hope that we've helped to advance the conversation and to encourage people to really be thinking no matter what your age about what you would like what county and and out counties through the d n a with the rest of house on the n s a and hospice care and life care services i think it's a wonderful program and we should all have deep gratitude for you being here in our community with you really thank thanks for having so thanks for watching and i hope that this was informative to you i would really encourage people to check out the web website start the conversation dot org and to begin the conversation and perhaps on our front porch forum or here in the richmond community library we'll do a invitation for people to come and