[Music] good evening and welcome to doctors on call i'm dr mary owen faculty member within the department of family medicine and biobehavioral health and director of the center of american indian and minority health at the university of minnesota medical school i'm also a family physician for the fond du lac band of lake superior chip law and i'm your host for our program tonight on end of life in advance care planning the success of this program is very dependent on you the viewer so please call in your questions or email them to ask wdse.org the telephone numbers can be found at the bottom of your screen our panelists this evening include dr jeff copeman a family medicine physician with fairfield fairview misawa clinic in hibbing and dr amy greminger a faculty member at the university of minnesota medical school and internal medicine specialists with essentia health our medical students answering the phones tonight are katie benson of staples minnesota katie mclaughlin from hibbing and abby raider of glencoe minnesota and now on to tonight's program on end of life and advanced care planning thank you both for being here dr grimming let me start with you we have a couple of questions but i want to know from you why is this topic so important you're an internal medicine doctor i think you have some insight on why you're here tonight why is this this topic so important to you i love talking about this topic because i really think it's so great to focus on the patient and what they want with their life and so the opportunity to talk to patients and and plan with them what their wishes are what their values are what their hopes are what their desires are really puts the control back in the hands of the family and that is so rewarding to be a part of so i'm i always love talking about this epitome of patient-oriented primary care dr copeman anything to add to that yeah i it is such an important part of medicine right now what we've run into is there's a lot of patients that actually have not even considered advanced care planning or advanced directives and i've always been of the firm belief that it's easier to make decisions when you're of sound mind and body to make those decisions should something come up where you're incapacitated and you're forcing a family member to make those for you and so um i spent several years doing primary care and we actually have started doing that now as part of our office visits so that that's how important it is and it's never too late to talk to your loved ones about what your wishes are should uh you develop a terminal illness or become incapacitated what's too early when do you start talking to people well a lot of times we recommend even in the 40s or 50s i've always told my patients in primary care that that's one thing you should do around your 50th birthday and start your your advance care planning and even sometimes i've mentioned it earlier because we just don't know what life is going to bring we don't and we don't and even just to get people used to that conversation that it's a norm yes that you get to control the show and this is part of it what happens to you at the end of life i so agree with you you know i think sometimes it's not something that younger people necessarily think about um but if the last couple of years have taught us anything it's that anything can happen at any period of time and so it's not necessarily spelling out all the intricate details that you might go into later but knowing kind of what you want in general and who might be a good person to help if you weren't able to express that and getting the opportunity to talk to that person about that and make sure that they're okay with that role all can be such helpful things even for for younger people as well and a lot of times it's been a topic that's uncomfortable for patients to talk about um i a lot of times if we bring that up they say well is there something wrong with me that you're not telling me am i dying and now that we've had um time and effort to try to get those in advance it's making things a lot easier people are just getting used to it being part of the students being part of the company they don't assume anything bad yep right exactly yeah um and and yet we have seen like dr greminger you just mentioned the past two years we've seen some tragedies because people were not ready for death and not saying that they should have done this there's no blame at all it's just that so many people i think are were caught unawares absolutely and that's why i love these conversations because it really is about control and putting that control back in the hands of patients and families so again just knowing who who might be a good person to talk to about what you might want if for some reason you were unable to talk for yourself i think i think even that one piece of information is so helpful for people dr copeland we'd have a question from the audience what is an advance directive and what things go on one that's a very good question because sometimes that can be very complicated um what basically in general an advanced directive is is you're telling the healthcare system what you would like done in the in the um in the case that you become severely ill or terminally ill now there's different kinds of advanced directives you may have heard of a living will a durable polymer attorney a pulse and i'll try to explain those and amy i'm sure will help me but in general that's what advanced directives now the subparts are basically what we call a living will and a living will is tell exactly what you want done and that can include what's called the durable power of attorney which is someone you've designated to make decisions for you should you become incapacitated so in other words the directive is just the over overall message of how you want to direct your care at the end of life exactly and then the living well is what exactly what you want done as you come to the end and durable power of attorney is someone who helps you get there right and the other thing that's that's come recently is something called the pulse and i know that's that's determined and it stands for physicians orders for life-sustaining treatment because with previous advanced directives um it wasn't a physician's order and so even though someone may not want to have be resuscitated if an ambulance would come they would have to do it anyway until they get the physician's order so in order to prevent a lot of that a group the groups got together and they developed this pulse which actually is signed by your physician and it goes through all the details of what you would want done whether you want to be resuscitated and if you don't want to be resuscitated exactly what you would want done and it's signed by a physician and it's taken as an order so you need both the pulse and the living well you don't have to because some of the components of the living wheel are in the pulse itself okay but you can have both yes and uh what are they usually they're usually signed by your doctor so they're the doctor would know if they were different yep and a witness in the living will a lot of times go through an attorney's office also okay do you have to have an attorney no okay i think that's an important point for people it is a port point yes they worry about costs absolutely and i think you know whenever you have legal words and i think it's always a little um challenging for people to think about so when we talk about health about power of attorney specifically in this context what we're talking about is really somebody to make your health care decisions for you and that's what we call a healthcare power of attorney that is oftentimes for for many people that's the same person that might make their financial decisions but it doesn't necessarily have to be and so i want to make that decision that distinction that you can choose somebody to help with your health care decisions it doesn't have to be the same person as who would help with financial decisions if you weren't able to do that and they're that's confused a lot of times it is and it's confusing uh for for patients and so this is it because that it's specialized terminology i think that that's another barrier that sometimes people experience and and that's why it's it's helpful to just talk about it and say well what does this actually mean and and go through that process and people are happy to help you through that so our audience should know tonight that they can ask their doctors if their doctors haven't brought it up they can ask their doctors about all these questions that they have absolutely yeah ask them to even write it out or make it really simple for them or direct them to someone in the clinic who might be able to yeah and i know in the clinic that i work at we've had several people who are actually certified in advanced care planning and they take the time to go through all the details of what advanced care planning is and not that you make any decisions right at that time but at least it's an information informed one that you take home and then can come back and meet with them so it's a really good thing it's a nice process yeah so it's another thing to ask if your clinic has that person specifically exactly especially if there's a lot of questions about it and this person has a question that's very common i'm having a difficult time breaking broaching the subject of end-of-life planning with my aging parents how do we approach and work through this and i'll start with you dr copeland you know i think the the most important thing is yes it's a family issue but a lot of times it's it's good to have your physician initiate that because i i think that we're able to outline better what prognosis is we can discuss what terminal illness means we can discuss what all the details of the advanced directive mean and there's a lot of there's a lot of miscommunication there one of the things i used to see quite often is that when someone was asked to do an advanced directive and they decided to be what we call a do not resuscitate they would assume that we don't do anything and that is not true i mean basically what a dnr means or do not resuscitate is that if you're already gone we don't do anything to bring you back it doesn't mean we stop all your meds it doesn't mean we do anything and that's a big misconception that's why people would not want to sign it that's such an excellent point that i've had patients confused by so in other words if you are trying to broach the subject consider having your health care provider with you yes not in other words it's exactly what you just said yep to help you or one of the providers in the cl or one of the people in the clinic who might be specializing in that yeah and medicare actually um has um a specific code that we do for as physicians for advanced care planning okay i think that that's such a great question and such a common that's a very common concern that a lot of times this is really hard for people to talk about which is why sometimes a third party can be helpful i think it's also whenever you go to have that discussion about something that is challenging it's helpful to think about why you're doing it in the first place and what's the advantage of it and and there are many advantages i would say the first advantage is to the to the patient themselves that the patient gets to be confident that they will get the kind of care that they will want and that is a gift but there's also huge benefits to the family about this and and and that's important to consider as well because sometimes what happens um is that families don't know what people want and then they end up making decisions and that can be really distressing on the other hand i've definitely had patients and families that have had the chance to have these discussions ahead of time and the families will tell me as their patie as their loved one is going through their experience i am so glad that we talked about this i know exactly what mom wants i know exactly what she needs and i it is hard and it's hard for me but i am so confident that i'm doing exactly what she wants and that's not only a gift for the patient that is a gift that you live with leave with your family with like forever it's so it's such a it's such a wonderful thing to do for your family well said this question gets into that too how do you prepare families for the death of someone in your family how do you prepare other family members for that you know i think that um to some extent it's something that it's hard to ever prepare for because everybody handles it different and and so i think in terms of preparation what we can do as a medical community is really turn back and face the patient and the family and say what are you worried about what are you concerned about what is important to you at this time and if we can help them answer those questions then we can maybe dissipate some of that worry and help them embrace the things that they value so that they can focus on their values in that time and and and so it looks a little bit different for everybody but that process of helping people identify what's important to them and focus on what matters most is i think really central to this process anything to add dr copeland yeah um we have what we're there's a there's something that we have started now up on the range and it's it's becoming more and more popular um around something called palliative care okay and patients will say what is palliative care and what is hospice care and when that question you ask is so right there with what palliative care is so i'll explain it to you so so when somebody has chronic illness we know that they're not going to go away they tend to progress palliative care our specialty is symptom control maximizing everything we can knowing that the disease is going to progress when the disease progresses to where in our best estimation there's six months or less of life left then it's hospice care one of the things that we do when somebody is diagnosed with terminal terminal and progressive illness is that we will begin palliative care not hospice care because palliative you're still getting treated for things but all those things that amy talked about are started then and all the things in your question we start preparing for for end of life we start getting uh things in order we try to maximize symptoms and that's a the beauty of our program when does um we know that hospice care usually we try to guestimate around six months how about palliative care palliative care we look at when patients have two to three years in our best estimate of life six months is hospice okay thank you i think a lot of people don't quite understand the difference between them they don't and that's it can be very confusing another thing to ask your doctor or people in the clinic this is a great question and i've run into this many different times with my own patients what happens when the person has an advanced care directive and their family disagrees with what should be done so they're not agreeing with advanced care directive thanks for looking at me for that one yeah so that does happen sometimes and that's why this advanced care planning idea is so important sometimes patients know what they want and identify it and then aren't talking to the families about it and then that creates some competing desires at that time i think ultimately in in the medical field our goal is always to go with what the patient wants in general um and even when we're talking to the family we're not talking to the family about what the family would want for the patient we asked the family to tell us what the patient would want for themselves if they were right here sitting with us around a table and sometimes those are those claim those are really difficult things to balance i know i've had issues with family where they might want one thing and i love them they're my family member i don't want them to die and and and i have my own needs around that and i think what we try to do as a system is to try to help come together around the patient and what their goals are and what their values are and to try to get everybody looking at that same frame and people can have different perceptions about that but the goal is to try to to work to get everybody on the same page i think it really points out that a key fact or one of the most important pieces about these directives isn't just filling out a paper but getting families talking about it and getting other members of the family on the same page yes and that is as big i have seen sometimes families absolutely torn apart over advanced directives in a classic scenario was when someone did not fill them out and then they're terminally ill incapacitated and one side of the family wants this done and another side wants the other side done and it becomes very very difficult and who who makes that decision and so if there's family members that disagree the biggest where we see that come is mostly when when when patients are imminently dying because sometimes you see guilt where family members that have not been there for their loved one and so they come in and they want everything done whereas those that have been with them understand that the disease is terminal and the likelihood of them surviving for any length of time is small and so like like amy said the most important thing is engaging your family but the other thing is that when this happens a lot of times we sit down and have a family meeting and because us health care professionals the social worker can at least explain to the family members why those decisions were made why we're honoring those and why these the um you know the interventions that they're wishing is not going to change the ultimate outcome and so i reinforce holy what what amy's talking about is engaging the families long before that situation arises absolutely if i had one tagline for this show i would say advanced care planning it's not a document it's a conversation right right and um oh i forgot my thought let's get back to these questions that people are asking what resources what resources are available for writing an advanced care directive i'll ask you dr koppman um the the first thing is that what when when you're doing that is we have there's all these different forms and we give them out in our clinic visits that go through the details of that but also um there's a lot of stuff online and that's the starting point and the other thing is that if you're looking at a a a living will type thing that can be started even at an attorney's office but personally i think the best place to start is with your doctor right and they can guide you and they'll know your resources too yup exactly and remember there are other services like legal services legal aid in our state that also can help without all the cost if you can't afford these things because they are so important exactly right should we kind of answer this one should everyone over 25 have a living will in my opinion yes actually we i g i can say i feel so strongly about this we do this with our medical students even at the the medical school not to say that they have to have it signed and notarized but that they have we we ask all of them to look through those forms and and to think about it and it's really um i've received a lot of really positive feedback from them that it's actually really beneficial that they hadn't thought about that before and they're glad that they did and a lot of times it prompts not only discussions in themselves but also question discussions with families and i think that that also is a value of having younger people do it because they think about the questions for themselves but it also helps them to think about well do i know what my mom and dad would want do i know what my sister would want do i know what my significant other would want and those those conversations are so helpful i think i i know what i was thinking besides uh guilt that people have coming in family members coming in i think there's a lot of fear people are just afraid they're afraid and it's a human response to not want to lose your loved one exactly that's perfectly natural yeah so what should i think about when choosing a healthcare representative the power of attorney what should what some of the conversations that i should have with that person i'll ask you dr griminger that is such a great question i really appreciate that um i think i think that when when i when i talk to people about that it's not necessarily the person that they feel like it should like it should be like i i don't think that just because you're married it should necessarily be the spouse it's somebody that you can talk to this about ahead of time that knows what you want and that will be able to follow what you want and sometimes the people that were were very close to that might be challenging for them um and and so i think that those are the things that i ask people to consider who knows what you want who can handle that role who is able to follow what you want and and who is okay with it there are also times where people say i know that this person really loves me would try to do what i want but it just might be too much for them so it's also important to consider if the person is able to kind of handle that and and be okay with that rule exactly that um i echo that it doesn't always have to be your next your spouse um it's then like amy said it's someone that that you would entrust to make a rational decision and to and to make known what your wishes are right it can be too painful sometimes it is i've had patience with that since i don't really want myself because it would be really hard for them i've had patients feel like they were causing a death by following through on the orders yeah so good thing to think about at what points in life should advance care directive be updated dr combined they should be updated whenever um i think what will back up us is that they can be changed they they're once it's done if you do it at age 45 that does not mean that has to be the same thing at age 65 they can be they can be changed and you just chose those numbers i just chose those numbers yes as an example i'm sorry um is that it's something that's fluid and it can change at any time um i honestly think it's good that when people are diagnosed with with illnesses that they may not have had before and just periodically to to review what you want your your your care to be and it can change i totally agree with what you're saying um you know i usually once people have it written down i encourage them to update it on the deck like once a decade oh yeah um and and once if if there are big life-changing events like new diagnoses or if they've been recently in the hospital a lot of times and that hadn't been something that they've been through before a lot of times i think it can be helpful to update it yeah and and to be honest with you almost every time that someone is admitted to the hospital it's updated because it goes as a physician's order on record so right on the front of the chart office um this person brings up a good question my husband and i have an advanced directive at st luke's how would my children know or learn this and the point being that it should have been talked about you should be talking about with your children with your family and even if you choose someone else to be your power of attorney they should probably be talking with the people who are closest to you so it's not a big surprise exactly yeah i've had times where it's been a surprise and i think i think it's always better when it's not a surprise it's better if people kind of know what's coming here's a common misconception if i have a living well can doctors still resuscitate me you know it it all depends on the situation the the one example i think of is that anybody that's having surgery a lot of times their their their advanced directors are reversed because things can happen that are completely reversible you know let's say your blood pressure drops because of the meds but that's something that's reversible or let's say somebody comes in and they mistakenly took too many of their opioids that's a reversible thing so a lot of times we still will resuscitate based on that because it's reversible right i would i would say it depends on what your living will say so if i if i'm in my 20s my living will might say that i want everything to be done and this is a good person to ask and and and you know kind of thinking maybe about some serious situations but very often younger people with living wills do want to be resuscitated and that's perfectly fine um so i do not think at all that having a living will is contrary with being resuscitated it really depends on what you want and what you specify in that care we don't have much time left but i do want to get this question in because it's really important what's the difference between home hospice hospital hospice and hospital hospital someone let you dance that doctor grimmington because i know how much you love this topic i do you do know me well so what i tell my patients is hospice is a program not a place and so hospice can care for you at home and it can care for you in the hospital depending on what your needs are uh it can your family's needs and depending on what the family's needs are it can it can vary depending on your time in hospice too we have patients that come to our hospice program and they start off in home and maybe they get some more symptoms and then maybe they need to go to the hospital for a little bit to get those managed and and then maybe they go back home again depending on what their goals are and what their wishes hopes and dreams are we have patients in nursing homes that are on hospice programs so i think i think that's such a great question it's a question that that a lot of people do think about hospice as a place but hospice is a program that cares for you regardless of place thank you dr gremenger we have about 10 seconds do you want to add anything in 10 seconds oh we're just going to say exactly what amy had said thank you very much i think it's um really important what as you said at the beginning of the show what's most important is that people realize that they should be talking to their doctors about this if their doctors aren't talking to them or their care providers in general and it's really about autonomy our right to control what happens to us at the end of life absolutely you said that so well thank you thank you i want to thank our panelists dr jeff koppman and dr amy grimager and our medical student volunteers katie benson katie mclaughlin and abby rader please join dr ray christensen next week for a program on diabetes when his panelists will be dr nahi kabawi and dr john wood thank you for watching and good night [Music] you