Hospice Nursing Care Plans

planning for end-of-life health care decisions is notjust about old age. a medical crisis can happen at any age and can leave you or someone youcare about too ill or unable to make his or her own health care decisions. even if you'renot sick now, making health care plans for the future is an important step towards makingsure you get the medical care you want even when doctors and family members are decidingfor you. it can be overwhelming to be asked to make some serious decisions for someonewho's very ill or dying. it's even tougher for people who don't have written or evenspoken guidance about what types of levels of treatment their loved ones wanted for themselves.we are here today so that we can avoid those difficult situations. this afternoon, we havethree distinguished panelists to speak on

this important topic. and introducing thembriefly starting to my left, karen griffith who is from compassion and choices of washington,which provides support to clients and families facing difficult decisions; carla jolley whoserves as a palliative care advanced nurse practitioner at whidbey general hospital;and grethe cammermeyer who is a retired army nurse and owner of the saratoga view adulthome. i will give each of our distinguished panelists an opportunity to make some openingcomments about why advanced health care planning is so important and the experiences they havehad with these matters. i will, then, each -- i will, then, ask each of the panelistssome directions questions. afterwards, we'll open the floor to questions from our audiencehere and those following this forum on twitter.

when the time comes for questions from theaudience, i will ask audience members who have a question to raise their hand and wewill come by with a microphone. so we're now ready for opening statements and i'll startwith karen griffith. thank you. thank you, marshall. it's a pleasure to be here and tobe in such distinguished company as grethe and carla. uh, i've worked in hospice forseveral years as a director of volunteer services. i'm on the board of the hospice foundationfor jefferson healthcare and, as marshall said, i'm a client support volunteer for compassionand choices. how many of you have heard of compassion andchoices? oh, quite a few. okay. i'm impressed. ourmission is to promote excellent end-of-life

care and expand the choices you have of theend-of-life care. we advocate for you having a very peaceful and humane death. compassionand choices of washington is the organization that put together the coalition that passedi-1000 back in november of 2008. how many of you remember voting on that in 2008? okay.interesting. what we've found in our organization is that many people voted on it one way orthe other, and then kind of promptly forgot about it, and so i'm here to refresh yourmemory today about what it is you voted in or voted against.we educate people about all kinds of options toward the end of life and what their choicesare and help them through those issues. we have client support volunteers all over thestate that help people free. all our services

are free. we provide information about advanceddirectives and, as many of you know, we have a wonderful couple of advanced directive workshopshere in this building tomorrow taught by judy mccay, who's sitting in the back of the room.and the last but not least is we support and help people through the process called deathwith dignity. so when someone calls our office and said i've decided i want to leave thisearth earlier than when the fates may take me, we send a volunteer, such as myself, totheir home to talk them through the process, kind of literally and figuratively hold theirhand through the process, and then we are even there on the day they choose to end theirlife. the law passed was 60 percent of the votersin support of it. that meant 40 percent didn't

support it so we know we have some peoplewho are in opposition to this law but it is the law of the land and i want to share withyou throughout the next hour and a half here and there about what this law is about. howmany of you kind of remember this story? brittany maynard in the newspaper and on the localnews and the national news last november? she was a young woman, 29 years old, witha glioblastoma brain tumor, and she was living with her family in california and they pickedup and moved to oregon, which also has the death with dignity law. she said i want tochoose when and how i die and indeed, she did on november, uh, 1 and it was very, um,very sensitive and very sad but i'm glad that she had that choice.there's lots of controversy around the law

and so i want to clarify some of that. firstof all, i want to tell you that doctors have been helping patients who are near the endof life to die ever since there have been doctors. it's been done very discreetly, um,not a lot of fuss about it, but it's been happening for literally centuries. i wantto be very clear about terminology when we talk about death with dignity. we feel terminologyis very, very important. this is not euthanasia, either voluntary or involuntary. voluntaryeuthanasia is when a person asks a health professional to give them an injection ofsome sort, dr. kavorkian. involuntary euthanasia is when we put down animals and capital punishment,where, of course, there is no consent. so in no way do we consider this euthanasia.please don't refer to it as euthanasia. it

is also not assisted suicide, which is a classe felony in the state of washington, and the reason it's not suicide is this. with suicide,a person often has some sort of a deep depression. they often take their life in a very violentway. they do it alone. they do it without warning their family or friends and it leaveshorrible psychological after-effects. this is not that. this is now a quiet, peacefuldeath with family around. it is where a physician writes a prescription where the patient, himselfor herself, takes the medication. so we're going to ask you please not to refer to thisas suicide, which it's not. it is not also a choice between life and death because peoplewho qualify for the law no longer have the luxury of choosing. they don't have an open-endedspan ahead of them. they are facing a terminal

illness. so if it isn't either -- any of those,we call it aide in dying or physician aide in dying. only mentally competent people cando it so that if you think about it being a slippery slope, well, first we're goingto start taking the life of the mentally handicapped or the physically handicapped, et cetera,or people with alzheimer's or grandma in the nursing home who's using up my life savings,can't be done because it has to be done by a person who's mentally got all their marbles,has to be a legal resident of the state of washington, age 18 or over, has to have theconsent and the support of two different -- two different physicians. so it's not -- it'snot done easily or without a great deal of thought.medical interventions are able to keep people

alive long past the time where in the olddays people would die of certain things like perhaps high blood pressure or hypothyroidism.now, with medical treatment and drugs, people are living long, long lives and the downsideto that is well, we may want our lives to be good as long as we can. we certainly don'twant our death to linger, and most people don't want to suffer endlessly once the possibilityof living a good life is gone. so at a certain point, our physical bodies give out and we'refacing the inevitability of how we want to die. hospice palliative care, very importantcomponent of death with dignity, and i'll be glad to give you lots of statistics abouthow, you know, who uses it, et cetera. but i will say this before i turn this over tocarla and that is it's not about escaping

pain, interestingly enough. only 15 percentof the people who use death with dignity say that pain is even an issue. isn't that interesting?only 15 percent. pain can be well managed through great hospice care and palliativecare but it is lots of psychic and emotional pain and there are other symptoms around thedying process that are not pretty to see or feel and so this is about people who cometo the end of their life and say enough is enough. i will not let this take anymore awayfrom me now than it already has. so with that, i'd like to end and we'll talk more aboutit with your questions and give it to carla. [applause]thank you, karen. so i'm carla jolley. i'm

a, uh, palliative care advanced practice nurseand for those of you who are not familiar with palliative care. palliative care is actuallywhen we look at a new health care specialty in the last decade or two, really focusingon what we look at as far as quality of life issues. and so the focus of care and the focus,what i call another layer of support for patients and their families because we know when someonehas a serious illness, it is not just about the patient. it is about who supports them,their friends, their families, and sometimes it's about being in isolation if they don'thave any support. so it becomes a bigger picture, a holistic approach.so when we look at palliative care, it focuses on pain and relief of symptoms and, um, whateverthe diagnosis. so a lot of times people associate

just palliative care with, um, a cancer diagnosisbut it also is for, um, end-stage lung disease and heart disease and alzheimer's, um, becausein that spectrum of disease trajectories, we do all leave the, um, world. sometimesit is with advance stage and frailty but we do have a spectrum in that trajectory where,um, we may be getting treatment or curative treatment for a long period of time, thenit may be just palliative treatment. we're trying to treat symptoms and then it becomesadvanced disease or providing support around end-of-life.and so when people often associate palliative care with just hospice care and my -- my feedbackto that is all hospice care is palliative care and that we are looking at relievingpain and suffering and supporting the patient

and family. but not all palliative care ishospice care because you can access that approach to care, that layer of support sooner in your,um, in your journey with chronic illness. so it specifically focuses on people who haveserious illness, um, because we know that that can add a lot of stress and concern,um, around, um, how best am i going to manage in the next few weeks, few months, and sometimesfew years when we think about people who are living with end-stage dementia, which is avery, very difficult journey for families and their loved ones, much less for the patient,themself. so finding, you know, what we know in medical care is that sometimes, um, youknow, those short five to eight minute appointments don't always capture the ability to have whati call conversations, and so when we bring

it back to advanced care planning, which iswhen we're -- what we're here to learn a little bit about, is that palliative care reallylooks at that conversation around that. it really is not just filling out a form. itis really about having a conversation about what our values are, our beliefs are, whatwe want, what we don't want. the question that i always start with patients and familieswith is what matters to you most. when you think about end-of-life care, what mattersto you most? is it being -- remaining independent? does it mean being surrounded by your patient-- your families? does it mean having a death at home? does it mean feeling safe? what mattersto you most and i can't answer that question for you but you can answer it for yourself.and even more important, if you have helping

someone else in that decision making process,what is their answer or have you ever asked that question what does that mean to them?what matters to them most about where they want to be, what they might want to have happen?and what -- the other thing that we often need to consider in these conversations isthe decision points because along the line that when we talk about advanced care planning,it is important to get your information onto a form but it's more important to know thatit is a process. and every time you have another trip to the emergency room or every time youhave a stay in the hospital, if you are living with serious illness, it'll be another setof decisions to make. there'll be another person asking you what would your mother havesaid if she could speak for herself. well,

that's easy to -- for me to ask you but it'snot always easy to answer if you haven't had conversation about that. and conversationis important about yes, do you want to resuscitated or not, but it's more important about whatis their value around that. is it quality of life? is it quantity of life? was yourdad always a full-court press kind of guy and never give up or was it just like i'man old lady now at 88 and i have -- lived a good life and don't you dare take me tothe emergency room and don't you dare put a tube feeding down me and don't you dare.now, that's fine if you have a parent that is quite strong in letting their wishes beknown. but what about the daughter who asks the question and the mom says that's veryunpleasant. i don't want to talk about that.

i mean what do you do then? because i'll cometo you, if i'm sitting at the bedside trying to help families make decisions, i'll cometo you and i'll say what has your mom said. so maybe sometimes i can figure it out whenthey say i don't want to be like aunt gertrude over there, no way, jose, don't ever do thatto me, um, or they might say, you know, uncle joe had a great death. i want mine to be justlike that. and so sometimes, teasing that out is hearing stories. you know, what stories,um, because stories is what informs us if we had a good experience with a loved one,then that's a great story as far as what we might want for ourselves. if we had a badexperience, then we know for sure what we don't want for sure as well. and so when welook at that spectrum of continuum, um, certainly

sometimes we're allowed to make a decisionand we have some control over it and sometimes, you know, health happens. health crises happenand we don't always get a lot of time or ability to think about that. so we need to have talkedto our durable power of health attorney. if there is nothing else that you do when youwalk out of here is that is the one form to have because that person's going to speakfor you. we can write down our wishes and everything but that set of decisions is alwayscomplicated and so that person who's making those decisions for you really needs to understandwhat you would want or not have wanted. one of the things that, um, i'd like to introduceand i put on your chairs is called the conversation starter kit and the reason that i am sucha pro advocate of this is that it's kind of

that step before the advanced directive. itsays, you know, really what are my values, what matters to me most, you know, how muchdo i want my loved ones in my business, you know, yes, no, um, or yes, i do want thembut do they know what i want? have i ever talked to them? um, it talks about how muchyou want to be part of that decision making process as well. we, as a health care community,as a medical health care community, we started out -- dr. goldberg -- way back when beingvery paternalistic and making all the decisions for patients, several decades ago. then, wekind of swung the other way and we said okay, here's your information, make your decision.well, i don't know about you but a lot of us aren't sitting in this room with medicaldegrees and so, you know, it's just like well,

you know, how am i supposed to know what imight want or not want with that. so really what we're looking at as a, hopefully, aswe're growing as a community that's responding to people's concerns about having their choiceshonored is we want a shared decision making model, meaning that i give my best as i knowexpertise about what's happening with you, what kind of decisions you might need to make,and then you tell me what matters to you most, what do you value and what are you afraidof or afraid that might happen or what might not happen. so that becomes a very importantconversation as well. so i encourage you to take a look at that. if you're a social mediabuff, it is on the website, very interactive and has some lovely, um, some videos and sheintroduces this particularly, and this is

what i would like to point out, when we lookat, um, where people want to die, about 70 percent of them say i'd like to die at home.when we look at the kind of not so great statistic, about 70 percent of us will -- are still dyingin hospitals, nursing homes, and facilities. so how do we make that different? well, wemake it different by being proactive. um, just like the berley movement. it didn't comefrom the medical community as far as fathers in the waiting room, having birth plans, allthose things. it came from consumers and so your responsibility as consumers is to sayi want my choices honored. um, but i need to participate in that process too, whichis putting a plan together, having a conversation with your loved ones about, um, if they haveto speak for you or what you might want to

have happen as best we know. and if we don'tknow, at least they know what your values or beliefs are so if i ask them at the bedsidewhat would your mother have wanted, what would she say to you right now if she could speak?would this be acceptable to her or not? and you can say, you know, we had a conversation.thank you. [applause]well, you've been hearing the process. i'm a -- the pragmatist, uh, because, uh, youin most cases would not come to me. uh, i have an adult family home. when i retired,i decided i needed to do something with 50 years of nursing and, um, my spouse, her motherlived with us for five years, uh, had progressive dementia and needed a caretaker, uh, someone,um, and i thought it was going to be me, uh,

because i'm so good.[laughter] and, uh, and, uh, so, uh, i started doingher care and then realized that i was absolutely trapped. i could do nothing. i couldn't gosee my kids or my grandkids or, uh, have -- have any sort of a life and realize that, uh, iwas not alone in this, that there were other people who were going to be in the same situation.uh, we've been talking about the process for us as individuals but many of you may have-- have, uh, family members who haven't had those discussions because they've been uncomfortableand you don't talk about it, uh, and, uh, some of you may have -- be familiar with thisbook called, uh, can't we talk about something more pleasant? it's a, uh, really a fascinatingtragic story in a way. it's a cartoonist who

tells the story of her elderly parents whodon't want to talk about anything, don't want to leave home, and the process of finallyhaving enough bad things happen to them that they end up in a care facility because ofthey can't be taken care of at home and then, of course, as -- as children of aging parents,they also hook us. you know, there's no way that even though we're 60 years old, thatwe are 60 years old to our parents because they can say something or do something andit just brings up that adolescent in us time and again, and you, you know, my father'snostrils would wiggle before he was going to say something that was going to push mybutton. but the point is that we have an adult family home. decisions to a point have alreadybeen made by the time you realize that you

can't deal with the family member or you,yourself, don't want to live at home and take care of all of the issues and you know thatyou're going to die. uh, you have just gotten a diagnosis of cancer and have less than sixmonths to live and you want to be taken care of and just live your life without any burdenat all and you may choose then to go to an adult family home rather than an assistedliving facility of something like that, and then we contact compassion and choices andthey come and work with -- with you as a member. in most cases, what happens is that someonewho's already losing mental capacity, not only the physical capacity but also mentalcapacity and with that, you don't have the choice of how you choose to die and if youthink about it, none of us know how we're

-- well, it's rare that we would know howwe're going to go and we would like, in those cases, for it to occur rather quickly. i'vehad a patient, a resident with me now for six years. she came with a broken neck, fracturedfemur, uh, couldn't speak, had had a concussion and, uh, we cured her. she was up walkingaround. the problem is that she had alzheimer's so she has been with us for six years andwe watch her just slowly lose capacity because that's the way the disease is. and there wasa time when she said to me, uh, grethe, you can help me. uh, and i -- i said i don't knowwhat you're talking about, um, but, of course, i did, uh, and she -- she just wanted it toend because she was feeling that she was losing control, um, but with alzheimer's we don'tdo that, uh, and so we have to watch the process

of somebody, uh, somebody dying.uh, the most difficult thing i think is for family -- family members to make a decisionabout what you do with mom, how do you -- or dad, how do you get the support that theyneed if they are living at home alone or are living with you? you know, you have to tryto sort all of these things out because it can really, really expensive, uh, to have24-hour daycare in your home at $20 an hour. that's more than $500 a day, uh, if -- ifyou need 24-hour care. so it's trying to, uh, just manipulate the resources that areavailable and look at what options might be. most of the calls i get are not about placementor having someone in, uh, move into our home but rather, you know, where do i go and wherecan i get some help and how can i find somebody

to help out, uh, and to try to advise peopleon what some of the options are. by the time they come to a facility, at least an adultfamily home or something, these, uh, polst forms, uh, the physicians order for end-of-lifeor for life sustaining treatment are usually filled out, uh, and so that some decisionshave been made by family members on behalf of their relative, uh, which really is essentialand -- and i think to have really opened conversations about what is the cost, what is the risk ofnot having one of these forms. you end up on a ventilator and you die in the hospitaland, uh, that -- that just really wipes out any resources that you might have. uh, itwipes out the -- the sort of the dignity that you might have also. it is an essential pieceof paper as well as for following after the

advanced directive that you have written that-- that carla talked about because otherwise, you really have no say in it and you haveto have a little information about what's the benefit of cpr. what's the benefit ofgoing on a ventilator? what's the benefit of having surgery when you are 95 years oldlooking at, you know, whether it's something acute or is it something that would prolongyour life, and i think that we sometimes can get hoodwinked into thinking, you know, it's-- it's like putting a new model in a 60 year old car. you know, you've got a good motorbut the rest of it just isn't working and no matter how much you try to repair the rustyholes, it ain't going to go back to where it was before, and -- and i mean the realityis that that's what our bodies are too. the

minute you start cutting and pasting, it doesn'tcome together the same way and you have to take care of it early enough so that you don'thave to cut and paste but then realize that, you know, it's the beginning of, you know,could be some real adverse effects in terms of your ability to care for yourself afterwards.i don't want you in my adult home and -- and i don't think you want to be there. actually,you might but, uh, but the point is that you would like to have more decisions about, uh,how your life progresses as -- as you get older.so i don't know that i have anything more profound in the process to say but thank you.thank you. [applause]well, i said we had a group of distinguished

panelists. i'm more convinced than ever. aren'tyou? let's give them another round of applause. [applause]for this section, i had prepared, uh, some questions for them, kind of as filler becausei -- what i want to know now is how many of you in the audience is prepared to ask a question? please raise your hand. see, i had a feeling-- i knew this was going to happen. that's great because it turns out, um, a lot of thequestions i was going to ask or some of them were directly answered by this panel in theirintroductory remarks. but i do want to ask a couple maybe. um, surveys show that onlya small percentage of patients have used an advanced directive. in those with chronicillness, only one out of three surprisingly,

and that only 18 to 30 percent of americanshave completed an advanced directive. lack of awareness is cited as the most common reasonfor not having an advanced directive. can you, and this is directed to all three, canyou comment on the factors or barriers for not completing an advanced directive? we'lljust go round robin. oh, can i just say one thing? that my favoritephrase around that, it's all -- it's always too soon until it's too late.oh, i love it. good an - yeah, i think it's a real reluctance on thepart of, uh, of all of us to really face the nitty gritty of i'm going to die and it'sa -- it's real uncomfortable to actually stare at a piece of paper that it asking you tomake black marks on it about what things you'd

want done at the very moment of or weeks beforeyou're going to die. so i think it's -- it's kind of natural thing for us to avoid theunpleasantness so i don't think there's any mystery about why, um, more people aren'tdoing it. uh, there's a lot of things in life we would rather not do, you know, go to thedentist, et cetera, and yet we do because it's in the long run better for us. so i thinkit's just simply a reluctance to acknowledge our mortality and to get real as -- as grethewas saying, very pragmatic about the nuts of bolts of how i'm going to die. so thisis our mission certainly in life. my sister in the back of the room who does the advanceddirective planning and myself were the death sisters -[laughter]

-- and we just have a mission in life to getpeople to do this document and when people give us the excuse of well, you know, i'mnot really that old yet. i say do you remember the names, terry schiavo, nancy cruzan, andkaren ackland? do you know those names? all three of those women were in their 20s and30s and were ended up in vegetative states for like ten years because they were "tooyoung to have thought about what they would do if that could occur." so you never tooyoung to be thinking about it. i just want to add, um, i think the otherthing is that people often, um, think that it has to be done with a lawyer and it doesnot. it certainly, as you know, you have a couple classes coming up but it certainlycan be done in a group setting or by yourself

or there's lots of resources out there todownload and fill out forms in washington. if you download a form like it's a five wishesand it has a notary place, you need to have it notarized. but other than that, you don'thave -- like i said, it doesn't take a lawyer to do it so it's finding a form or findinga format that makes sense to you. thank you. grethe in -- in most facilities, you can't even getin the door without one, uh, and in the hospitals, uh, that you fill one out when you registerto get in so if you don't think about it in advance, the time you don't want to have todeal with it is when you have to deal with it.right. yeah.

and may i just add one little thing aboutthat? first of all, the state of washington does not require living wills and advanceddirectives to be notarized. it's kind of interesting. many places, uh, like five wishes, et cetera,have a place for notarization but it's not required. and secondly, if you have an advanceddirective in place, you have -- excuse me -- you have it written and you have copiesto your various medical providers and you enter the hospital and they give you anotherto sign, don't do another one because then that supersedes and makes invalid the onethat you probably gave a lot of thought to. so what you want to do when you enter a medicalfacility is to take with you your advanced directive that you've already created. sotoward that end, my sister and i both have

our copies literally by the front door behinda planter - so can i --- so that we can take it with us. it's a -- there's a copy in the glove box, et cetera.so, uh, just a couple little twists to that. so, um, if you go to whidbey general hospital'swebsite, there -- on the advanced directive planning site, there is a form that you canactually download and have your for -- send your advanced directives in ahead of timeand so even if you don't get your care at whidbey general hospital, a lot of times ifyou access emergency services, then, um, you can, um, they will open a chart just for youto have that on record. thank you. well, since we talked about storageand you -- and, uh, copies of sandwich, i

want you to know that i have mine right now.good. i never travel without it including becominga moderator. good.so thank you. um, i'd like to ask one more question and then i promise i'll turn it overto the audience, um, because i'm sure this has come up before. what happens when a patient'sadvanced directive runs counter to what the hospital or doctors want to do?well, i'll take one swipe at it and then i'll invite the two of you, and that is that i,if it was my mother, let's say, and i took her to a facility that did not want to, um,honor the advanced directive, i would find another hospital and, um, if it was myself,i would say could i go to another hospital.

it's that important because there are thingsthat you want to be able to say on your advanced directive about what care is done to you ornot done onto you that in a hospital that won't honor it could be done to you or notdone to you -- onto you, and that's very serious. so that would be my first bit of, um, advice.so, um, advanced directives, you never can put everything that ever will ever, ever,ever happen to you on it and the decisions that are going to be made, and i'd just liketo give a quick example, um, that, yes, it takes conversations with your family and yourdurable power of attorney but it also takes conversations with the person who's providingyou, um, health care. my uncle who had, um, parkinson's did a polst and was pretty clearno tube feedings but he was a little stinker

and was out there doing bark dust and fellover and broke his neck. so he is down at harborview. my aunt is having a meltdown becausehe said no tube feedings but he is not end-of-life. it is not about this is a life prolongingmeasure. this is a temporary intervention so he had, uh, the tube feeding placed. hehad a, uh, you know, removed after he didn't need it and he had healed and that is end-of-lifeevent, which, you know, for end-stage parkinson's, one of the decision points issue is abouttube feedings. his wishes were honored so, again, advanced directives are guidepostsand, um, our tools for, um, health care providers to have a starting point. but sometimes wehave to go back and have conversations. you're right that it's important to honor them andif you're not feeling honored, there are definitely

chains of command. um, there's ethics committeesand ensuring appropriate care. there's ways to, um, be able to be heard if you feel likethat that is part of the conversation as well and all different kinds of health care settings.there are places to go with that as well. well, i think this is one of the concernsthat, uh, we who work in hospitals have had regarding affiliations, uh, that whether ornot your, uh, end-of-life decisions and advanced directives would be followed if you were ina, uh, church affiliated facility, and as was mentioned, you know, don't go there, uh,because you will -- you will end up being treated according to the religious doctrineof the facility rather than your own wishes. whidbey general hospital is not affiliated.it stands alone. on that -

it's taking on the world.yes. on that note[laughter] oh, that may be more real but -- [laughter]i thank you all for that. i'd like to now turn to audience questions but i do want toremind you of a few things. uh, please stand when you ask your question and let us knowwhich panelist your question is directed to. we would also appreciate it if you would identifywhich community you're from and if you represent a specific organization. if you have a commentto share first, that's fine. however, please limit it to a minute so that we can get themaximum audience participation possible. i do reserve the right as moderator to moveyou along if you're taking too long to get

to your question. that's why i signed up todo this in the first place. [laughter] for those who join us by twitter, please tweetyour questions and comments as you have them and we will ask them at the appropriate time.so now we turn to audience questions. we have two, uh, roving microphones. do we have adeb -- debbie, i believe? is that - kate.kate? and i'm -- i'm sorry. and becky. becky? okay. go ahead.yes. all right. so i -- i guess probably carla, you might be the better answerer of this.um, as far as how many copies of a single directive does a person -- should a personhave around and where should they be stored? so definitely not in the bank deposit -safe deposit box.

-- safe deposit box, yes. so, like i said,get a copy to your, um, providers. if you have specialists, get a copy to your specialist.so i mean part of it helps them to understand what your values are, um, to whoever you saidwas your durable power of health attorney, to whoever might get called as a, um, a personwho's on your, um, emergency contact list, in your glove compartment, like karen said,and then also, um, one in your purse. uh, you can never have enough, uh, you can have-- never have enough copies. um, but the pieces if you change them, you want to make sureyou've kept, uh, track of where you've put copies out because that's important if you'veupdated them as well. okay. next person.i heard recently that, uh, if you have a directive

and you say on there do not resuscitate andthen if you are unconscious and someone else calls, uh, 911 and paramedics come, that theyare required to resuscitate you. can anyone tell me if this is true?yeah. it -- it is true unless you have taken that advanced directive and you, um, and turnedit into a polst. so, um, unless -- because ems has a, uh, responsibility to respond toan emergency if someone's called 911, um, and if you -- someone does call 911, the onlyway they can kind of break that is to, um, certainly if someone's there with you thatknows your wishes, they can certainly talk to the, um, physician that's overseeing that,um, code. um, but really what you want is a polst and that is a physician orders andit is signed by your provider that says to

the ems do not resuscitate me. that's thefirst question it says and that gives them legal -- legal right not to, um, start cpr.okay. good question. very good question. next person?uh, hand over there, behind you. i have just a couple of questions. um, oneis if, uh, patients or clients want to put specific provisions in their advanced medicaldirective or their living will, like, uh, they want to put a specific time limit orminimum time limit or any other specific instructions, are those always honored by the medical providers?um, or how are those handled? and then, the other question is if there is an advancedmedical directive or a living will, and then there's a medical power of attorney, if -- andthe patient is not able to speak for themselves

if -- if they conflict, then what -- in reality,what happens at that point? maybe -- oh, go ahead.you want me -- okay. you alluded to that earlier.so, um, so, again, advanced directives, um, in and of themselves, are, you know, guideposts.they give us the medical community as best we know, and if you're telling me you wanta trial of tube feedings, um, what does that mean? well, it might mean something differentin different scenarios but it gives me a sense that you would like to kind of say if there'ssomething reversible, maybe i'd like it reversed but at some point, you know, i want you togive up. um, or we may be forced to give up. there's the other piece of that. um, the durablepower of health attorney, that person -- that's

why i'm saying, that person is so key in theequation because they can, again, you've given them the, um, responsibility to speak foryou and to be your voice and, um, if -- if they've been assigned that, then the assumptionis they're going to speak what your wishes are and like i said, we can't always know,um, as far as what may or may not, um, happen to people and there are nuances in medicaldecisions that need to be made and so, um, in -- what we do default to is the, um, medicalpower of health attorney and if it -- so if it is in conflict, um, then that's a problemand that's why i would say that, um, it's import -- advanced directives are importantbecause they communicate to the medical community. they communicate through durable power ofhealth attorney. but more important is that

you're having a conversation and you get asense of whether your loved one or who you have assigned is going to speak your voice,and, um, because they will be speaking for you.okay. thank you. um, my question is directed to, uh, i thinkboth grethe and karen. uh, you mentioned, grethe, that you have a, um, client who hasalzheimer's and has been there for six years and i guess my question to you is if in herdirective, she specifically said, uh, she did not want to be around when her mind wasn'tworking right, what happens then? can you get the -- the, uh, assisted?unfortunately, the law is read -- the law is written so that the person applying touse the advan -- excuse me -- the death with

dignity has to be mentally sound so by thetime someone with alzheimer's or dementia is terminally ill, which is another requirementof using the law, they no longer are able to make that kind of a determination, eventhough they said it a long time ago. that's unfortunate. um, now compassion and choicesof washington does have an advanced directive for people with alzheimer's but it is meantto be filled out by people who are in the early stages or fear that they are gettingalzheimer's and it takes care of all kinds of things about your care when you are nolonger able to make those kinds of decisions. but unfortunately, because of the protectionsand the safeguards that were built into the law to preclude abuse of the law, it was necessaryto say you must be able to make a sound decision.

therefore, what are the choices left for someonewith alzheimer's and sadly, there are not many, and grethe can speak more to those,um, after i say the following. and that is we know of people in the early to mid-stagesof alzheimer's and that's difficult to even determine because it's such a long -- long,um, slide, that have chosen to do what we call voluntarily stopping eating and drinking.so that they had still enough decision making capacity, not allowed to use death with dignity,but have said i'm through taking in any liquid or food and that's a choice that is stillup to them. and then, down the road would be on the part of the caregiver who, shallwe say, chooses not to treat something, for example, a uti, a urinary tract infectionor an pneumonia toward the end of life with

an alzheimer's person is -- and -- and nottreat it is often a quiet nice way out if the symptoms are treated. grethe, you couldprobably add to that. well, it's -- it's, uh, the -- it's the conversationthat you have with family. uh, the family determines the powers of attorney, determineswhen they no longer want, uh, a family member treated and sometimes we have, you know, theproblem is that we get so good in treat and prevention that they don't have the treatableillnesses or complications to allow them to pass, and so that becomes a problem on theone hand, uh, and a good thing on the other. but, you know, we all -- we -- we don't dieof alzheimer's. we die of a complication, uh, an pneumonia, urinary tract infection.you have somebody that takes a fall and then

they break their, uh, them and they end upin the hospital and -- and then, it just deteriorates from there. so it is one of those long progressive,uh, problems where you can't do anything specific but you can just withhold treatment for somethingthat is acute. thank you very much. uh, we're getting morequestions now. uh, forgive me if i don't pick you in the order in which you arose your hand.this gentleman, i remember. go ahead, sir. hi. just a couple of short questions. carla,and i'm confused about this, can you get a -- does the hospital take an advanced, uh,health care power of attorney? yes. yes, you can, um, any of your forms canbe put, um, into a medical record whether you've received care there or not. you just,um, get -- go down to medical records and

they'll open up a chart.okay. and also, that green form, i'm not sure i understand what that is and where i -- whereyou can get that. from your doctor.so this is, um, this is a -- a form that for people who, um, have a serious illness orchronic illness or have a reason to think that they're getting towards those last fewyears of life and are very strongly want to make sure that absolutely nothing happens,um, that they don't want to have happen, um, and that is -- has to be signed by your provider.um, so they have them in all the providers' offices and it's a conversation to have withthem and fill out with them. you can -- i'll be happy to give you one but, uh, to makeit -

apparently, i don't need it.no, they don't, not yet. but, um, but, um, but to have it valid, itdoes have to be signed by your provider and also, um, by the patient or their durablepower of health attorney. and finally, can the person that has the durablepower of attorney for your health care, can they override or can you make it that theycan override whatever is written? for example, if you want to say you want to have a dnrif you're, uh, i mean if something happened to me and i had a heart attack, --right. -- of course, i want to be resuscitated ifmy heart stops because i have some expected life ahead of me.right, right. but there's a difference between

a dnr when you don't have any expectationof life - right.-- and when you do and so i'm concerned how that works.again, um, that durable power of health attorney, making sure they just understand what yourwishes would be or not be, um, so that when they come to that point to make the, um, makethose decisions, they know what you would want under what circumstances and what youwould not want on other circumstances. and that's why i'm saying that advanced care,um, planning is a process, you know, as we age every year. i had one lady who, um, blesstheir little family, that was a conversation of the thanksgiving dinner, they -- everybodyhad to show up with their advanced directives

and update them depending on what happenedthe year before - or else they didn't get food, huh?-- or they didn't get their dinner. [laugher] so i think that actually is a really greatidea, that, you know, because we do -- health care -- health changes, our attitudes change,our, you know, what's happening to mom or dad changes so it's important to keep, um,the process going, not just do it and put it away and don't think about it again.and -- and if you do have a polst, make sure that it's available. yeah.on your fridge. uh, usually on the refrigerator or at leastin the -- the door of the nightstand or something like that. when -- when my spouse's motherdied, uh, she -- she never moves fast for

anything but on -- my -- my spouse but onthis particular time, she called to let 911 know that she had died. they got there soquickly that, you know, she was barely cold and, uh, we couldn't find the polst and so,you know, in this 95 year old emaciated dead woman, they were going to start cpr becausethey had to because that's what their job is. they are the first responders and i, uh,i, with my military background, i would have said to -- either drop on her body so theycouldn't touch her or go - [laughter]-- or go and get my gun. [laughter] -- to protect her body. uh, but we eventuallyfound this, uh, and the sheriff came and -- and, you know, so protected the ems people but-

[laughter]-- but -- but you want to make it so that this is available if it's needed because unlessyou're in -- in a facility. for example, in our facility, if someone dies and they havea polst, i can pronounce them because i'm a registered nurse but if it's anyplace else,you have to have somebody, uh, that is -- i won't say qualified, but is allowed to -- topronounce someone, uh, and so the ems people are the first -- first ones that show up,uh, and so just have it, make it available, have them see it and, uh, then make sure ittakes over in a much more calm way. thank you. i want to turn to my right. thisis the neglected part of the room. so does anyone over here want to ask a question? see,they're engaged. they're really engaged. okay.

i -- i can't tell who was what, when theywere. i remember this hand. i'm sorry. i apologize if i overlooked you.well, my question is a follow up on the last comments. marshall has his durable power ofattorney with him. yours is behind the potted plant. people i know who have polst have themon the refrigerator. how in situations where you're not at home do you make your wishesknown? that's where you have -well, it's either in my glove compartment in my car or it's in my suitcase so i've gota pretty good chance that if i'm not at home --what happens when you go for a hike? yeah, well, then you're going to be at themercy of -- of who is --

well, then in your --- your companion who can speak for you. okay. so there's nothing like a sticker youcan put on your driver's license? no.so you end up in the hospital, uh, assuming that you make it there and your next of kinor whomever is contacted and they, then, will have to make a decision depending on how aggressivethe hospital has gotten prior to someone in the family being notified, uh, which is theadvantage of having something with you, uh, or at least in your records or something likethat so that you're not on a ventilator before somebody comes and says they didn't want that.um, and so it's, you know, i -- i'd like to tattoo on my chest, you know, dnr, uh, but,uh, you know, it's -- these are the things

that one has to think about, uh, in -- inmaking decisions about what you take with you and the paperwork that you have alreadydone that's at home. thank you very much. um, i'm not the technicalperson but, uh, i presume a digitalized form would work if you load it up into your computeror your smart phone and then had to produce it at an emergency room or somewhere, wouldthat work? it doesn't have to be the original document or does it?well, i mean we're -- we're entering a new stage for sure, yeah. um, you -- if -- whatthey need to know are your wishes and if that form tells us what your wishes are, then thatinforms them as far as that decision making. um, is that a guarantee? no, but it will help.yeah.

okay.yeah. thank you. let's do someone in the back thistime. that lady over in the back. now, come in towards the middle. this is where i'm goingto move. my name is sandy mulkey and i'm with regencyon whidbey in oak harbor and this is really directed to caregivers in the room. uh, ifyou are a caregiver and your spouse or sibling or whomever you're caring for is at home andyou have run to 7-11 to pick up a jug of milk, god forbid you're in an accident, no one knowsthat the person you're caring for is now alone. my suggestion is to wear like a net-e alertbracelet that says i am the caregiver for -- which would prevent some, uh, disastroussituations. just a suggestion.

excellent. good.thank you very much for that. [applause] yep, i like that suggestion.okay. i promise we're moving -- this lady over here. please.this is more a comment than a question. i -- i don't fear death. i fear living withdementia or alzheimer's. i'd like to see the death with dignity or the compassion and choicesof washington work on that. in what way? i have no clue but i would like not to fearliving with that disease forever. i know. i know. thank you.okay. i'm still confused. i've got, uh, a healthcare directive, which i filled out and left with a friend and my daughter, and i neverheard of that green form before and somebody's

going to have to spell it because i didn'thear. i can't tell what it is if i'm going to ask from my doctor and i've got two ofthose little pill bottles that i picked up from the hospital with information filledout in them that's a little bit different. now, i'm willing to, you know, condense oneof these into the pill bottles and carry them but which one should it be? i still don'tget the difference between the green thing and the health care directive. so could youspeak to that? so the polst, p-o-l-s-t.it's an acronym. it's an acronym, stands for physician ordersfor life sustaining treatment. it is -- the intention of it is for people who have seriousillness or chronic illness or advanced age

or, um, have some reason to think that they,um, have a shortened life expectancy in the next few years, and your physician or yourprovider may be able to say this is appropriate or not appropriate, um, for you because theyare the ones that have to sign off on that. okay. thank you. uh, let's see. let's go tothis lady right here. i'm from oak harbor and if anyone has difficultyhearing, this library loop is wonderful. and also every time grethe said polst, i thoughtshe was saying pulse, if they have a pulse. pulse, yes.[laughter]that's important too. well, that sort of goes along with it.yes, it is indeed. pretty vital. so when i came to washington about ten years ago, idid go to an attorney and i had the advanced

directive and, uh, the power of attorney butdoes that -- i have a feeling the polst is more comprehensive than what i filled outat that time. does -- does one need to return to that and make sure that that's up to date,and i am going to do the polst form absolutely. but one thing i really -- i've learned a lottoday, very grateful to hear about keeping it in the car, uh, because that's where youvery easily could have an accident or so that's great. i've learned a lot from attending classesthat sandy gives or is part of for caregivers. so, um, my question would be do i need -- iknow about the attorney and have -- that it has to be given to the ambulance drive -- tothe medics when they arrive and but i don't have enough copies and so i -- i've learnedand will behave myself in the future. thank

you very much.thank you. the polst form does get periodically updatedand it was updated in i believe march or april of last year so if you've got one, first ofall, i don't know why you would have had one ten years ago. you're way to spry and spritelyto have had one but it does get updated. um, there's a -- there's a committee in the statethat works on it and it was recently updated. what does that say, grethe? because ours ithink - well, march of 2014.well, this one said 2011. there is the organization. no, 2014. i think judy the latest one? yeah.so the latest ones are fresh off the press, um, and again, i want to reiterate what gretheand carla both said about that polst is as

i kind of just look at you, most of you probablywouldn't need one yet because it really is for, as carla said two or three times, forthe frail, for the people who are really on that proverbial banana peel, shall we say,and are pretty homebound and you don't need multiple copies of it. you can have but youjust need the one kind of on your refrigerator because that's where an emt is trained tolook for it. so you wouldn't need one from ten years ago updated because you probablydidn't have one that was up to date but there is one that's fairly off the press withinthe last six months to, um, and your -- your doctors have them. your doctors have them.ask your doctor do i need a polst or not, and your doctor will say no, i don't thinkit's time yet or the doctor may say yeah,

it's time and that's kind of scary. it's time.[laughter] thank you. i think what we'll do we're -- i'dlike to take one more question from the audience but let you know that after we conclude ourprogram formally, then we will have about a half hour informally to mingle with ourpanelists and amongst each other to talk about some of these issues further. so i'll takeone more question. i saw a hand go up. you, sir.i'm going to retract my question because i have -you have to -- would you speak in the microphone please?yeah. i'm going to retract my question because i would rather direct this question to eitherof -- of you panelists or specialists, um,

because as an atheist, i have very specificconcerns about when and where the polst will be, uh, accepted or rejected. specifically,i want to know about, uh, island hospital. so i'm not going to put you to the test here.does anyone attempt to take that? i don't know if island is affiliated or not.no, island hospital, i can say on a quick -oh, oh, did you say highland? or island.island. island.island. island hospital is not affiliated. no, not affiliated.you're safe. okay. island hospital, last i've heard, wasthe only hospital in the state of washington

that actually provided for death with dignityon its staff, through its staff members, the only one. but yes, there's two? i'm sorry.i'm correct - there's two hospitals.i understand that. yes. he asked about - he'd just like to know.yeah, yeah. yeah, he was speaking -- we're speaking to island hospital in anacortes,not whidbey general. i think with -- can we go from that? we have these -- these looks.i'm looking at these looks here. okay. what i'd like to do now, i thank you for your questions.uh, we're at the close of our program this afternoon and before we conclude, i'd liketo ask each of our panelists, uh, to answer this final question. it's a trick question.if the -- if the audience members were to

take home just one message today, what shouldit be? in any order that you want to respond to. just one message.oh, well, okay. i'll start then. um, the one message i would like you to take home is thatyou have a wonderful organization in this state, compassion and choices of washington,who stands ready to help you if and when you get to that point when you want to use thedeath with dignity. um, short of that, compassion and choices stands ready to help you withpreparation of advanced directives. we have developed with the -- with the help of a senior,uh, elder law attorney at the university of washington, an advanced directive that combinesboth a living will and a durable power of attorney into one document. it has been vettedand tested and molded and loved and it is

a wonderful document and it even has someaspects about it that really delve into sort of the possibilities of alzheimer's affectingsome of your care, et cetera. so i would urge you to attend the workshops tomorrow or onmarch 23rd. if you're unable to do either of those, i would urge you to get onto ourwebsite, compassionwa.org and download the advanced directive that we have there andthe alzheimer's advanced directive is also on our website. so that's what i want to leavewith you is an awareness of this organization filled with compassionate people who standin awe of the death process who consider it a privilege to hold the hands of our clientswhen they actually make that step and to know that you can indeed have a good death. that'swhat i want you to know.

thank you. carla?so, um, around advanced care planning, if you didn't hear me before, the most importantthing is that person who's going to speak for you when you can't and that they understandyour voice and what that might be and what matters to you most around that. um, i woulduse the tool, the conversation starter kit, for those who have people who are difficultto engage in those conversations. they even have icebreakers in there. um, so and also,um, to, um, look at the spectrum of choices that are available for you at end of life.um, when you're living with a serious illness, certainly we look at, um, hospice when, um,there's no longer a cure but we're look, you know, focusing on comfort. it is about livinguntil you die and allowing that natural death

and supporting that through that interdisciplinaryteam. if you're in the process of still getting palliative treatment for their, um, live,you know, looking at what else is out there available for you as a supportive -- a supportivelayer, there are -- it's an amazing community for such a small community. we have some greatresources and, um, look at what those might be to support you and your family in thisjourney. thanks. thank you.there is another really quite exceptional book called being mortal that has just recentlycome out. it's a physician who, uh, sort of has an epiphany in terms of -- and they dooccasionally, don't they? [laughter]uh, but that -- that, um, sort of takes you

through, uh, how we ended up having nursinghomes and, uh, assisted living facilities and that sort of thing, and then vignetteson, uh, sort of the process of dying, um, depending on what the illness was of the particularpatients that he's talking about, and then his own journey to understand hospice, tounderstand the importance of, uh, having those conversations early with significant others,whether they be family members, uh, direct family members or parents or children so thateveryone hears the same message and that that's done while you can still make the decisionsrather than leave those decisions for somebody after you are in the hospital or when theyhave to make tough decisions about whether or not to take you off the ventilator. uh,you don't want to leave those decisions for

someone who hasn't -- who doesn't know whatyour journey is, uh, and, uh, it -- i think it really reflects well what happens if youdon't -- if you don't do the work when you can. um, my kids have known for a long time,you know, do not resuscitate, um, but that's my choice and my values. i'm too bull-headedfor anything else but so were these parents, uh, of this particular, uh, writer and, uh,so there's some humor in both of them but there's also the seriousness to give you someideas, uh, if you -- if you -- if it's such an uncomfortable subject or you haven't beenaround people as they take the journey to that next phase.who's the author? uh, the last name is g-a-w-a-n-d-e. that'swhy i didn't say it.

it's atul -[laughter] yeah, i believe it's gawande.gawande. atul gawande.yeah, lovely book. well, thank you very much, grethe. we've cometo the end of our allotted time. if you've not already done so, please complete yourevaluation of our program and discussion. sno-isle libraries would appreciate any suggestionson how to improve issues that matter forums or ideas you may have for future topics. atthis point, i'd like to recognize our panel. please help me with a round of applause.[applause] i also would like to thank you, our attentiveaudience, for your thoughtful questions and

comments. please give yourselves a round ofapplause. [applause]and last but not -- and last but not least, i would like to thank sno-isle libraries andthe sno-isle library's foundation for making this forum possible. more applause please.[applause] if this afternoon's discussion has made youeven more curious about this topic, you can explore the many information resources availablethrough your community library or on the sno-isle library's website. you may also wish to attendthe next classes on writing an advanced directive scheduled for march 23. the classes tomorrow,by the way, are full. the classes on march 23 will be taught by karen griffith and judymccay of compassion and choices and will be

held here at the library at 9:00 a.m. and1:30 p.m. spaces are limited to 35 per class and pre-registration is required. after weadjourn, please feel free to stay for the next half hour or so and chat with each otherand our panelists. thank you again for coming.