 We're glad to see you all here today for the second in the series of speakers of our spring session. I'm very excited to have Toni Cating joining us today. There's Brochures about what she's speaking about, Patience Choice of Vermont. On the table you can grab some on the way out and there's also some Valentine chocolates. So I'm going to introduce Toni. She has a brief set of slides that she's going to share with us and she's leaving a lot of time for discussion and questions and she will answer them as she's going along with her presentation. If you've got a question you're afraid you're going to forget it, just put up your hand and she will recognize you. I first met Toni in 1977 and so we go way back. I was just started up the Horn of the Moon Cafe and she was running an apartment right behind it. She and her husband John had just moved to Vermont. We'd been lucky to have them as Vermonters all these time joining us in our lives and helping us through many medical challenges. So Toni is a long time nurse who has worked in clinical, academic, administrative and policy positions in Vermont. She retired from the University of Vermont where she held both faculty and administrative appointments in the College of Nursing and Health Sciences and as director of the Freeman Scholars Program. She co-chairs Patience Choice of Vermont Board and handles many calls from patients and providers that Patience Choice of Vermont receives. She lives at the end of a dirt road with her family in Worcester, Vermont. Let's give her a welcome and start her up. Thank you so much. Thank you for coming in today. I see some familiar faces in the audience and that's nice. So my name is Toni Keating and as Ginny said I'm a nurse. My clinical background which I think might be relevant here is oncology because oncology comes up a lot around medical aid and dying. I'm retired and I volunteer for Patience Choices for Vermont which is a not-for-profit organization. There's information about it in there but it's an organization that is made almost completely of volunteers, doctors, nurses, pharmacists, social workers and others. And it was the organization that ushered medical aid and dying into law in Vermont ten years ago in 2013. And since that time it's been around only for education and safeguarding the law and trying to assist access. So I kind of like to keep this informal so I will leave time at the end but if you have comments or questions please interrupt me and I'd like to handle it that way. And if you have any experience with medical aid and dying either direct or indirect please chime in because to a large degree what I will talk about is the way the law is supposed to work and I would like to know if that's not the way it always does work. So please let's make this a conversation if you have anything to add. I'd love to hear it and just chime in. Okay push the button oh now there's a whole bunch of them. That's the one. Okay so let's start with the definition. The definition of medical aid and dying is medical aid and dying gives adults who are terminally ill and who are capable of making their own decisions the option to receive a prescription medication to be self-administered to bring about a peaceful death at the time of the patient's choosing. The four highlighted words there are key because that's what defines eligibility. We often get you know calls that say how do I apply what you don't actually apply you have to be eligible and your doctor makes that decision and these are basically the terms upon which that your doctor decides whether you're eligible or not. Administered means 18 years or older. Terminally ill means within the last six months of your life. Capable means mentally competent and self-administered means that you must be able to most often drink a small portion of liquid that contains the medication. Okay what I'd like to talk about today is what medical aid and dying is and what it's not. So I'm going to start with what it's not because that's simpler and shorter. So Ginny medical aid and dying is not three things. First of all it's not suicide it's not euthanasia and it's not for everyone. So why isn't it suicide because it kind of sounds like suicide you take a drink of something that has you know a fatal potion in it you drink it and and your life has ended. It's not suicide for three reasons. First is a legal reason. What is what is put on these death certificate is the underlying pathology. For example if you come to medical aid and dying because you have pancreatic cancer and you already are dying of pancreatic cancer and you're in the last six months of your life that's what comes on to the death certificate pancreatic cancer. The second reason is that that it that it's there's a legal difference is that insurance can't be denied if you use medical aid and dying and that's not always true for for suicide but often suicide victims the families are denied the benefits. So right in the actual Act 39 law it says it uses the the term shall not be denied insurance benefits. So yeah question. Medicare doesn't work for medical aid and dying because it's federal and this is being approved as a state-by-state thing. We can talk a little bit more about that later because it's not that people who choose medical aid and dying can't receive Medicare benefits they absolutely can. The benefits just can't be paying for things directly related to the act of medical aid and dying. Such as the medication. Yeah. I'm looking at the legal difference and if it occurs to me that you're losing it in a death certificate if it says pancreatic cancer. Are we losing the historical fact that the person made this choice in his life? What do you think is an important choice? Yes you are losing that information on the death certificate. I noticed that more and more people are including it in their obituary or telling the story and I think our move to tell the story in most cases because it's a positive experience but but it doesn't show up on the death certificate. Yeah. So that means we can't collect the data for Vermont or is there another way to collect the data? Oh no there's lots of data. The law asks the Department of Health to actually collect the data around this and they report out to the public every two years and I'll talk about some of those numbers in a few minutes. Okay so there's a legal difference. There's also a practical difference I think between suicide and medical aid and dying and that is if you are seeking to end your life through suicide you can stop. You just stop. If you're seeking to end your life through medical aid and dying you're still going to die. Because no one is eligible for medical aid and dying until they are in their final months of life. And then there's an emotional difference that I really have noticed that suicide is almost always surrounded by trauma and pain and grief and regret and all of these very strong often negative emotions. Medical and dying, the words you hear most from families and friends who remain are gratitude and peacefulness and gratefulness and relief and it's you know these words like it was a profound experience and thank you so much. So it's a much different tone of ending than with suicide. So that's, it's not suicide. Any other questions about that? It's also not euthanasia, mercy killing. And the reason why it's not mercy killing is that means that somebody else has to do the actual administration of the fatal medicine. And as you saw in the definition one of the rules of medical aid and dying in Vermont is it has to be self-administered so that you have the control and you can change your mind at any point and no one will stop you from doing that. Interestingly enough I think Canada does allow other physicians to administer the medication to you and they do it by IV. And so when a person in Canada seeks medical aid and dying they are offered the choice would you like to self-administer or would you like to you know a physician by IV. And 99% of the patients who use it choose IV by a physician. So you know it's a safeguard for us so that, so that to prevent any kind of abuse but I think thought that was sort of telling, yeah. So you have to be able to swallow? Yes and no. The most common route of using this medication is orally. So it's drinking a small amount of fluid two to three ounces like you know like a large whiskey shot with the medicine in it. But if people are eligible but they have a problem with for example swallowing like some neurological problems or maybe they have Crohn's disease or some kind of GI kind of obstruction or some kind of condition that might affect absorption of the drug. You know sometimes it's even constipation. Then there are two alternate ways to use. The most common second choice is rectally and it's sort of like inserting a small catheter into the rectum and in that case I have a visual aid. So in that case they must be able to suppress a syringe that looks sort of like this. It's a little bit bigger. It doesn't have a needle in it but this would be, the medication would be in here and this would be pushed right into the tube, go into the rectum. It's not used frequently but it's used and it's very effective. It's not unusual. In the case if we use this there almost always has to be a nurse involved just to help. So then the tube is inserted and the self-administration part is that the patient has to be able to suppress the syringe but no swallowing is involved. The syringe is actually a little bigger than this but it looks like this. So some of this is timing of doing it before you lose certain controls. It's tricky. It's tricky especially for neuro people and we'll get to that. So it's not euthanasia but it is euthanasia in Canada and I think they're not afraid to use that word. I think they use that word. And the last thing medical aid in dying is not, it's not for everyone. First of all you have to be eligible and second of all no one should ever be forced or compelled or urged or threatened to use it in any shape or form and that includes healthcare providers. So the reasons for people choosing to use medical aid in dying are not, using medical aid in dying are always personal and they should be respected and they are protected by the law and we would protect them. But that includes doctors and that includes nurses and social workers and it's everyone's right to choose. So along that line I would recommend checking with your doctor now. You don't want to find yourself in a position of looking for a new doctor when you're in the last six months of your life. So I recently had got a new primary care physician and on my first visit I said to her, so I'm fine but if I found myself in this position and I wanted to use medical aid in dying would you be willing to help? And she said yes and I have even already talked to my colleague that we will be the second opinion for each other. So that made me like her. When a friend of mine did a, she needed to get a doctor initially to approve it and then two weeks later another doctor, is that still the case? It's kind of, no it's not actually, there are two doctors involved but you can think of them as the prescribing doctor who is the main doctor and you need a second opinion. And almost every case and maybe your friend is an exception because there are exceptions but almost every case the prescribing doctor finds the second doctor. Because the only reason that second opinion has to happen, that second opinion doesn't have anything to do with the medical aid in dying part. It just has to confirm yes you are terminally ill, yes you are mentally competent and yes you are capable of self-administering. So was that a problem for your friend? Her primary was just didn't want her to die. Oh yeah. But it ended up as truly, but she had to see another doctor. Yeah that's a common problem, yeah. So if it ends or not you don't have the option of intravenous? Correct. You don't have the option of what? Intravenous, I'm sorry. No intravenous but rectally or through a gastric tube, as we do, yeah. You were talking about doctors who are sometimes talking about doctors who are more into performing procedure. So is there a list of doctors available for people? There is not. Do you have to repeat the question? Yeah, the question was and let me just say it is the most common question the helpline gets is do you have a list of doctors who is willing to prescribe? And would you please send me that list so I can move to Vermont and use that? So there's no list and no doctors wanted to be put on a list because I think they were afraid of becoming the death doctor. And many physicians, I would, I don't, I kind of want to say most physicians would be willing to assist their own patients panel but really unwilling to accept a new patient for the sole reason of ending their life. And you can really understand that, right? So when people call and say I've talked to my doctor and he won't talk to me about it, what do I do? Can you help me find another doctor? Even though what I said before is true, I really respect a physician's right not to participate but sometimes they just say no without thinking. And partly I think it's because one of the things that doctors seem to be very afraid of is for anything that they say to be interpreted that they want to get rid of you. They're very careful not to let it on that they want to get rid of you. And so very often they will never bring it up. If you want to talk about medical aid and dying and you have a bad diagnosis, in many, maybe most cases they're not going to talk about it until you do. Because they're not going to put themselves in a position of seeming like they're urging you on. And you kind of understand that, right? And the other thing is if they haven't looked into it and it hasn't been around that long and it's not used that many times. So there's lots of doctors in Vermont who have no experience with it and it's just not something you want to deal with. It sounds like another bureaucratic, it sounds like more forms and honestly I went to medical school to save lives. I really don't want to be in the business of ending lives and so no. But sometimes if you ask twice and you convince them that you're serious and you're eligible and this is a legal right and you're my doctor and will you please help me and if you won't will you please refer me to somebody who will. And typically in small communities doctors know other doctors and that's your best route. We don't have a list. I think no one would talk to us if we had a list. But working through your own doctors to find somebody else if your own doctors won't help I think is the best way to go. Most times people aren't seeing doctors but there's practitioners and such. So is it only doctors? It's only doctors. It's medical doctors and doctors of osteopathy deal. That's also right. Now some states have allowed nurse practitioners and physician assistants but not Vermont. Any more? Yeah. Act 139 states that witnesses to the patient's written consent cannot be the patient's physician. What does that mean? The written consent word? Yes. Witness can't be the patient's physician. Yeah. Who can it? Oh somebody walking by. You know sometimes it's like somebody who works. It has to be an unrelated person so it doesn't seem like I am going. The doctor doesn't want to be the person witnessing the decision, witnessing the signature. If he's going or she's going to be the one ending life. It needs to be a neutral person who can verify that no one is forcing this patient to sign. You know I don't know. Is there a legal person in that? Yeah. I work with the attorneys who are in this and it's also unbiased and does not benefit from death. That's right. Yeah. Someone who does not benefit from this person ending their life. Okay. So it's not for everyone. The physicians also. But sometimes they might need just one more nudge to make them agree. So let's go on to what medical aid and dying is. Good job. So first some facts. Medical aid and dying was made legal in Vermont by Act 39 as we've said in 2013. It was the fourth state to allow medical aid and dying after Oregon, Washington and Montana. It's now legal in 10 states and plus Washington D.C. and it's in the legislature for 13 more. And one of those that it's in the legislature is New Hampshire. And you may know that New Hampshire had its first hearing on the topic last week in the Senate hearing. And by all reports it went pretty well. There's some skepticism whether it will be passed on the first year. It is in legislature. That's kind of unusual but it went well. So Vermont is really looking at it with fingers crossed because so many Vermonters get their care at Dartmouth. And that, you know, there have been workarounds to try to make that work but it's very complicated and messy. And it would help a lot of people who get care at Vermont if New Hampshire would pass the law. The median age of people who use medical aid and dying. Did you have a question? The median age of people who use medical aid and dying in Vermont is the mid-70s. The female, number of female users who use it is almost exactly the same as the number of male users. Since 2013 approximately, well officially 203 people have ended their life with, made. That's the official number but as I mentioned the health department collects those numbers and they only report out every two years. So that's a little bit outdated and it's probably a few more higher than that but that's about right. And in recent years, in the 10 years that medical aid and dying has been legal there has been a gradual increase each year in numbers of usage. And that I think is appropriate as more people become familiar with it and it becomes a little more acceptable. And that's a nice learning curve I think to chose. Anyway, we're now seeing about 40, maybe 42 people last year. So it's growing. In those 10 years not one reported incident of misuse or abuse. The biggest users as we mentioned as cancer about 75% of the deaths with medical aid and dying are triggered by cancer. And some kind of neurological disorder is another 13 and then the remainder is a small hodgepodge of things like COPD and congestive heart failure. Roughly 30% of the people who go through the process and fill the prescription do not use it. And that's perfectly okay. It's perfectly okay with everyone. It's only there if you need it. And many people choose medical aid and dying because as a safety net really they're afraid of what happened. If my pain gets too much worse, I want an exit strategy. Or if I start, it drags on too long, I'm not going to be able to take it. I want to be able to control. And many people just want to be able to control their ending. And honestly that is okay with everyone. In fact, when the pharmacist delivers the meds to the patient, there is included a stamped self-addressed box or bag to return the meds if you don't use them. Because they're pretty powerful and no one wants them floating around. And so you put them in the bag and send it back. That's right. So any questions about? Yeah. Yeah. That's another reason. I mean people die because they waited because they didn't need it and then they die. So there's no time limit? There isn't. The only kind of time limit is that physicians will urge you to kind of estimate when you think you would, when many people say, I would like to try to make it until April and then do it like that. And if you can kind of narrow it down and you're not held to that date, but if that kind of allows everybody to get the pharmacist to mix the potion. And in Vermont, maybe you've heard in the news, there is only one pharmacy in Vermont that fills the prescription and hand-deliver it to the patient. And so he drives to any place in Vermont and he hand-delivers it to the patient. And at that point the patient can use it or not use it. But if you don't use it, please send it back. But it tries to keep the medication not sitting around. That's nice. It is amazingly nice. Have you heard about or come across patients who want to hasten their end because they don't like being a burden, financial or otherwise? I have heard stories of that. That people say things like, you know, particularly men do not want to be a burden to their families. And so they know that the end is near and they don't want their children to see them suffer and they don't want to be a burden. And so this is their choice. I think that burden argument is controversial. Many people feel that somehow our society has made them feel like they're a burden and that is really unfortunate, but that is a thing. I would also think that given the appalling costs of the end of life, if you know that you are going to die and it's costing, you know, tens of thousands of dollars a day and you're not comfortable, it could be a generous thing not to say you're a burden, but I don't want to cost my family and my system. I think that is the reality. Yeah, I think you would have a hard time convincing your physician that that's why you want to end your life. But I think that is a real thing. I agree with that. I'm tired of that. I watched my sister log go through a reusable end of life experience and it's not just the financial costs, it's the emotional costs on the family and the patient. It was a horrible, horrible ago. This was not an option. I've heard people say, I don't want my children to see me suffer and I want them to remember me this way. I think there's another movement in the United States that's called something like a completed life and it talks about how you find yourself in a certain circumstance and you are ready to die and it's not directly related to medical aid and dying, but it seems to me that's what happens sometimes as people, they have a terminal diagnosis, they know the end is near. They've said everything they're going to say to someone and now that things are complete and they are ready. And I think that brings peace. The pharmacist in Vermont. He said it's only one. Helen Steeves-Hockberg, yeah. Rutland. The actual medication needs to be filled in a compounding pharmacy and all, I mean I don't know for sure all, but most of the chain pharmacies around, you know the Walgreens and all of that, are not compounding pharmacies because they're more difficult to set up and they're more expensive to run and so there is at this point, that is the only compounding pharmacy, Rutland pharmacy, that is filling the prescription. He does have six sites, so that helps. And the other thing is that Steve Hockberg, who is the owner, is semi-retired and he is very committed to this, to medical aid and dying and wants to make sure it's done right. So he mixes it himself and he hand delivers it to patients and he gives them education on the spot and he gives them his phone number so that if there's anything that comes up and he makes, you know, we consider it, I mean he's a God's end, I mean it's a blessing and he's a wonderful person, but we need a backup and at this point we have not found, there might be another compounding pharmacy in Burlington and we're talking, we have some docs talking to them but apparently there are not many compounding pharmacies around. Did you have a question? I've heard it's very expensive to pay for it and does insurance cover? Insurance does not cover. So the prescription in the time that I've been volunteering, it changes regularly. It's evolving, it's a new enough process that they're still doing research and they're changing the prescription so every change makes it more reliable and more predictable. So I think it's changed three times since in the last few years since I've been. When I started the Seco, the Seco Barbatal was the, and you had to open up 100 little capsules and dump it into the thing. That cost $3,700 and there was no insurance for that. I'm going to talk about the process and we'll get to this part, but it now costs $700 and again Medicare still won't pay for it, but it's a much easier, there's no pills to open up and dump in. You may be covering this later, but you mentioned, excuse me, that the prescription itself has been evolving. Is this based on knowledge of people who had attempted this and the drug has not worked? Attempted it and what? And the drug has not worked. It always works. It always works. There's sometimes some variability and we'll talk about that, but if you can get it in, it always works. Tony, if you're in a hospital, I'm assuming this can't happen. Can not happen. You have to be at home or maybe at a nursing care facility? No, almost always at home. So the law gives healthcare institutions the option of opting out of sponsoring, hosting this kind of activity and every hospital has opted out. And at the beginning every nursing home has opted out. There is some crack in that because people live in nursing homes and that is their home. So if the alternative is going to a hotel and your life, how kind is that? So at this point, most nursing homes still say no, but a few of them have said yes and then make everybody sign nondisclosure agreements so that no one knows that they have actually facilitated a death there, even though deaths happen in nursing homes all the time. The hospice, the respite house in Vermont, they do not, although we are banging at them because they really should. But assisted living is a question mark. Some assisted living arrangements are saying no and others, there's some interpretation of the law that says you aren't a healthcare institution. You are a home assisted living and you should allow it and there's some movement around that. How would they know this is happening? Pardon? How would they know? Yeah, that's exactly right. Wake Robin has really taken the lead on this and has allowed medical aid and dying to happen at all levels of their institution, so that's a pretty good leader. What did someone do if they were in, say, Berlin Conversants Center and they don't have a family member that says come and be here and they're just stuck? Yeah. So that situation does come up and what happens if a person is in a nursing home and they don't have family or friends that they can lean on to help them at their house? Hospice has come to the rescue on this and often can help find somebody who either has experience with medical aid and dying and wants to give back or it's just the kindness of strangers and it has worked out. Once, after Rob Merman's play at 39, we got a rush of mail from people who say things like my mother used it and I would like, if somebody is coming and doesn't have a place, we would like to do that. Or my mother wanted to use it and wasn't able to use it and I don't want that to happen to another family so we would like to use our ski home, our spare bedroom, it's various things but the kindness really poured in after that play. Okay, the actual process, which we've talked about it a lot but we'll pull it together now. So there's sort of five steps in the process. First of all, there's three requests. Two of them are oral and one of them is written and there are forms to track those. Typically the physician provides the forms but if you're interested, they are on the Department of Health website and you could look them up. They are strangely simple. I mean, they're just one page and easy so I'm not sure what that's about but it's interesting. So two oral requests to your physician 15 days apart and a written request to your physician that is witnessed. Then there's the second physician opinion. Pardon? Yeah, it says, yes, I am here witnessing this person signing a form asking for it and I can see that happened. It's sort of like, it's like a notary but unofficial notary. Not like your spouse or someone. Nope, somebody who is unrelated. I think there are a number of legal decisions that need to be witnessed by an impartial party so I don't know the rules about that but it's that same. The second physician, as we said, his only job is to make sure that your terminally ill looks at your records. Make sure your mentally competent talks to you and determines that you have the physical ability to self-administer. Mentally competent, I think they have to be experienced where some of the drugs that they're given when they have cancer actually seem like they're not. They talk sometimes about things that don't make sense but it's the medications. So that's a perfect example of why it's important. It's best to work on this with your own doctor because your own doctor would know what medications you were on and what effect they could be having on you and make some arrangements for that there to be a small medication holiday so that... I think generally speaking your physician is able to understand when the drug is speaking and when you are speaking. The bottom line is if the physician feels that you are mentally competent to make decisions regarding your health care. They're not going to ask you to divide hard numbers. They just want that level of judgment in place. Okay, so after the medication, after the... did you have a question? Yes, this brings to mind, if you know you're going to lose your mind, this can't help you, right? Pretty much right. Alzheimer's doesn't qualify. Again, Canada has made some strides in that area, some motions in that area. But I think the two most painful calls we get are people who would like to end their life because of Alzheimer's or ALS because they then lose the ability to self-administer before they're in the last stages of their medicine. And those are really heartbreaking. And then the physician prescribes the medications. So the medications come in two pieces. There's an anti-Nazia group and then there's the actual fatal prescription. The anti-Nazia is three pills, Regland and Zofran, if you're interested. And you take those 30 minutes before you take the actual medication and that will help prevent any recurgitation of the drug. So you take the anti-Nazia pills, 30 minutes later you take the other medication. So that medication, yeah. You referenced Canada's making some progress. I'm sorry to look at that. No, it's okay. It just occurred to me working with individuals with Alzheimer's disease or ALS. I'm sorry, working with patients with Alzheimer's disease or ALS. Can you tell us what the progress looks like? I know I can't do it a lot, but I know it's things like just because you lose your memory, that doesn't always mean you lose your judgment. So they're trying to parse that out a little and that makes some sense to me, but it also seems like a really big task to do it fairly. Some states even just to be eligible for medical aid and dying need require a psychiatric visit. Vermont doesn't. And if a physician is trying to decide whether you are mentally competent or not, they are urged to consult with a psychiatrist to help confirm that. That doesn't seem to happen very often, but that is an option for physicians if they need it. Yeah. I was reading where Vermont is the old state in which physical visits are required for aid in dying. Is that still true? Physical visits? Yes. You mean face-to-face went to? I don't think Vermont is the only state. Is that true? I don't think that's true. Oregon had that and almost everybody's law is built on the Oregon model, but it's partially true. So yes, you do need to have a face-to-face meeting with your physician to make your first request and to make your second request. Since those laws were, that was before telemedicine. So telemedicine can be used at the doctor's discretion, you know, if he or she feels like he knows you already and you can do this, but you must be, the person must be, everybody must be in the state. You know, this was one of the things when Vermont opened their borders, people were calling from Texas and you know, can I talk to a doctor on Zoom and ask them for this medicine. This law is only protects people and only allows this kind of death when every single step of it happens in Vermont. You can't take the drug and go to an island or on a mountain top in another state and use it. You're only protected or your family and friends who are around you are only protected if everything happens in Vermont. Are there people who come to Vermont and have a limited amount of time to live here until they're old? So you probably know that. You had to be a Vermonter in order to use this law up until last May and last May the legislature opened up the borders which I think morally is the right thing to do but boy, it really increased the number of calls to, I mean, and they come from all over the country and everybody wants to move to Vermont to end their life. So no, there's no limited time. I think the biggest obstacle for those patients is finding a doctor as we talked before. There are some doctors who are trying to help because the need is great and the stories are heartbreaking but it's not legal to come to Vermont to end your life but it's not easy. So it doesn't happen very often. I think since May it's happened nine times. You said nurse practitioners are not allowed to do this. So many people have nurse practitioners who move us to get a medical doctor soon. Or at least talk to your nurse practitioner. I mean, say, you know, if I am in a position to do this, will you help me, you know, most nurse practitioners have pretty close relationships with at least some physicians and they should, you know, work together on that. Yeah. I assume the answer to this is no but is there any provision for someone with an illness like ALS or dementia to make a plan in advance and say if I get to the point where X, Y, or Z, then I want to have this option? Such a good question. No, there isn't. But there's progress and it's good progress being made to do that. So, you know, living wills or advanced directives have been around a long time. You can now find kind of prototypes of, I think they often call them dementia add-ons or something Alzheimer's add-ons. And they, you know, you can't use them for medical aid and dying but you can use them to strengthen what your wishes are before you lose control of... Stop eating, stop drinking. That's right. Don't give me anything. And it strengthens what you say while you still have your mental capacity for when you don't. And I think where those seem to be useful, especially useful, is in maybe nursing homes who always have felt compelled to feed. You know, I don't want to eat, I'm ready to die. And, you know, force feed. And with the right addition onto your advanced directive, those, you can strengthen that. You can strengthen that. So people are moving in that direction. I mean, it's important, but not yet. And I just wanted to mention, as someone who helped people with advanced directives, and as a former nursing home social worker, always try to get those things in writing and get it down there so at least they won't feed you together because it's the people that are making the money off the nursing home. Every day, you're paying in so many dollars. So does anybody have any experience with those addendums that, you know, that you can add to your, yeah? I made one out. How did it... How did it... What did the registry have to do with it? And how did it differ from your regular advanced directive or living will? How did it differ? It was rather similar, actually, but it's very specific to the situation of dementia or inability to, in other words, not mentally competent. Okay. You can hear him. Final exit network does have a form that you can attach to your advanced directive. Final exit network. Final exit. I know the state of Vermont on the Health Department website also has one, Dartmouth has one, Compassionate Choices has one, and Final Network. Final exit. Final exit, yeah. I had a lot of experience with executing and helping people execute advanced directives. You've got to be really sure that the person your directive is going to follow through, because you can write 5,000 pages and the person just isn't ready. It can follow the whole thing. So your medical proxy is important. Maybe the most important thing. I think I agree with that. Okay, let's see. We were talking about the medication. It's a powder cocktail. It comes in a bottle that looks like this. When it comes to you, there's about sort of a teaspoon. No, I'm sorry. A tablespoon, maybe a tablespoon and a half of powder in it. You add liquid, two to three ounces to here. You shake it vigorously. And then most people, I think it's a good idea, pour it out into a cup, because then you can kind of see what you're dealing with and what you're taking. A couple of things. It tastes terrible. It's the most bitter taste. No. The liquid that people tend to choose the most is apple juice, because a little bit of sweetness sort of helps to cut the bitterness. I've also heard whiskey. I think that actually makes it stronger. I've heard maple syrup. I don't even know what that does. But one of the main pieces of advice is to maybe take something like a popsicle or a sherbet before you take it just to kind of numb your mouth, then drink it down quickly, and then follow it up with a popsicle chaser again really fast. And it's really two ounces. You can swig it down and it's over. Somebody had a hand. So the powder cocktail is five drugs, and they're pretty common drugs. Each one in a massive overdose. Massive overdose. So just as an example, one of the components is diazepam valium, which is fairly common, right? And maybe a common dosage would be 5 milligrams to 10 milligrams. So the dosage of valium in this prescription is 1,000 milligrams. 100 times a hefty dose. And every other piece of the... all of the medications are kind of like that. So it's effective. Straw. Use a straw. Sometimes that helps. If you use a straw, use the big kind that you can get from Dunkin Donuts because it's a little bit thick after you've shaken it up. But that kind of puts the fluid a little bit farther back in your mouth. And now this is the key part. You must ingest within two minutes. Two minutes to get two to three ounces down. Sleep happens in three to ten minutes. So what you really don't want to happen is fall asleep before you finish drinking. So drink it within two minutes and you can expect you need to be in the position. Your final resting place when you take the medication because then things happen fast. And then death almost always within one to two hours. What would happen if someone only drank one hour? I don't think there... I don't know if one single case that has ever not died. But if... So I think the number is something like two percent of the people die within one hour and 90% die within two hours. So almost everybody will die within that one to two hours. If there's an outlier, and there are, they don't happen very often, it's almost one of two things. Either they didn't follow the protocol exactly and so maybe are falling asleep and they get the last bit in. Or more commonly there's something, some kind of absorption issue that we talked about before so that maybe there's a Crohn's disease, some reason why they aren't absorbing. Pancreatic cancer also often has reasons to cause absorption and Crohn's disease and constipation and diarrhea and lots of things like that. So it's really important to be honest with your physician and for the physician to be aware of what's happening so that accommodations can be made. But I think the normal, the people say is sometimes it lasts five hours if it lasts longer than that, call your doctor. But people die, they all die. Is it common for a physician who does not want to participate to refer patients on or is it uncommon? I think it's common. If a physician does not feel comfortable prescribing, is it common for them to refer to a person and yeah, I think it is common. After watching the play Act 39 and I saw a video recently of a Connecticut woman who was better to take advantage of this, their deaths were so peaceful. It just was so beautiful to me. It appeared they did not suffer at all. I mean, emotionally I couldn't testify to that, but is that... It's absolutely the most common way, the most common response. So once you have fallen asleep, the patient has fallen asleep, they don't feel anything more, they aren't aware of anything more. So there are, depending on the people, some like twitching, you know, in the rare event there's an occasional seizure, all of those things are terribly difficult for the people who are around them, but they don't bother the patient, the patient at that point for all practical purposes is gone. They just, their heart hasn't stopped beating yet. So I think one of the things that people talk about is when people are in the process of dying, one of the things that happens is an agonal breath where all of a sudden it seems like everything is going and then they go, everybody. And that's okay. It doesn't mean what you were afraid it means, it just means that it's one of their last breaths. That's it. Does a doctor or nurse need to be present? Does not. We always recommend having a hospice present just because if anything can go wrong, that's the way to do it. Also, a hospice nurse can pronounce death by being right there. So even if the hospice nurse isn't present, we always, what nice to be on call, that is the patient's choice. It's not necessary. But I will tell you that there was a recent case where a person did not have family, was at, used her friend's house to die. Forgot or didn't choose to get a do not resuscitate order or a colst. And that poor friend, when she called EMS to come and pronounce, and when they arrived, they felt like they were legally obligated to resuscitate. And so she explained what was happening. And basically threw herself on her friend's body. And so the EMT said, well, legally were obligated. So they called the police. And the police came, and this was a small Vermont community, and it was six o'clock in the morning. And they had not ever heard of medical aid in dying. So they called the detective who came and who then called the medical examiner. So it was kind of a circus, and really, really unfortunate, and just a colst form on the refrigerator would have. So that's the question is, if I invited somebody to be in my house and do this, what are the steps that I need to know so that I would never call 911? But who do I call? What is that process? That's why it's really nice to have hospice. And just on the case, whether they're there or not is not important. You can also call the physician, or people call us. And our questions are usually a little different. I still have some powder caught in my cap. How do I get rid of it? But as a host of something like this, I think it would be really helpful to make sure that this person has made arrangements for a funeral home to come and pick up so that we aren't left with that. So the fact that they died in your house, which is not their house, isn't considered other properties so the medical examiner doesn't have to come? Correct. A legal person has to pronounce that person dead. But it can be hospice. Now can you have home hospice or your doctor have the assisted death? We see the question. Well, you have home hospice, but you have a diagnosis of substance or less. But hospice itself does not really endorse this. Correct? Well, you can have a hospice person there with you. You can. You absolutely can. So there's nothing in the law that prohibits hospice from being there. There's nothing in the law that prohibits hospice from helping prepare the medication, shaking it. But most hospice agencies have policies around that and their restrictions, but because of Medicare and because their legitimate concerns. Medicare is specific about cannot do anything to assist a person's death or some kind of language like that. But most hospices find that they need to be there to counsel the patient. It's a workaround. It's a workaround. And in some case, it's just that they can't charge for the time that they've spent mixing the medication if they mix the medication. And so different hospice agencies handle that differently. And it's all about risk tolerance, how much they're willing. Everybody's like on a budget cliff. And so the thought of losing some financing because they were there. And so it's a problem. And so right now all of the hospices in Vermont are planning a get-together conversation and trade information about how each are handling it and how best practice can emerge because it's new. And so there's nothing in the law that prohibits them from being there. Sometimes their individual agency does prohibit them. This assumes the patient or the person is already enrolled in a given hospice. The hospice needs to have a relationship with them, not just to come to print. Oh, right. Yes, that needs to be another perfect reason why it's a good idea to be enrolled in hospice. The planning is in the making more later. Couple questions. Is there any movement in the U.S. to try to make legislation to use the Canadian model where a doctor can simply inject into the vein? Because it's so much more comfortable for the patient. And it works really well in Canada. Lots of conversation. But I think the general feeling is that all of the restrictions that kind of provide barriers to making it easier to get medical aid and dying at any level are there because it was the only way the law could be passed. You know, the opponents are afraid of the slippery slope, right? And that once you let dying people control the end of their death, the next thing you know is people will be getting rid of their mother-in-laws. You know, it's a slippery slope. And so that has not happened so far. And so I think as people, as it becomes a little bit more normalized and no, there's continued lack of abuse that people will become a little less afraid of it. But there's no official movements in that direction that I know of. Lots of conversation. Go ahead. The other point, Kellogg Hubbard Library has a book by the Canadian doctor who was one of the pioneers. It's called This Is Assisted Dying. This Is Assisted Dying, and it's a woman author, right? Stephanie Green. Yeah, Kellogg Hubbard Library. This is not about assisted dying, but when you were talking about DNRs, I live in a small apartment, it's subsidized. I sometimes don't see anybody for days, and I have a big DNR or thing right on my door. In case I die in my sleep, I'm very close to the fire department, and you come right up there and stop pumping me, and I know you've got that to happen. So if you really care about that and you're ready to die, put a DNR order on your door. I know someone who also has a medication bracelet that it says that on. Or a tattoo. Right here. I just saw something that began with the tattoos. They're no longer real. They're not considered real. Of course not. Is terminally ill still defined as within six months? Say the last part again. Is terminally ill still defined as within six months? In this case it is. But having said that, everybody knows how squishy six months is, right? I think probably everybody knows someone who has outlived their six months. Like three years. Or didn't make it to six months. So that's at best an estimate. It's another reason where it's the best idea to work. If you're seeking medical aid and dying to do it with your own doctor. Because your own doctor is going to be more generous having knowing you, trust you, know what you've gone through, know what you've suffered, know how serious you are about this. I just feel like those doctors are a little bit more generous about when you become eligible than a physician who takes a new patient doesn't know them and certainly doesn't want to be put in a position of ending the life of someone who isn't ready for it. Yeah. Just one more. You can go to the last one actually. Because in the words of Atul Gawande, our goal after all is not a good death, but a good life to the very end. Last life. Yeah. That's another question. Do we do another question? If people are fine with staying, we can just do it separately. That's like something more. Okay. This typically does not take notes. Everything you just said written somewhere. I think I've been recorded. Yes. I sort of feel like the important stuff is in the brochure. You know, the process is in there. Call me. We can talk.