(1745) Model Language and Terminology - YouTube
Transcript:
(00:03) welcome to the dignity 50 road map series this is session one of three model language and terminology my name is valerie lovelace i'm the statewide campaigns director for death with dignity and i'm also the executive director for maine death with dignity a separate organization in the state of maine i worked as the grassroots leader and organizer from 2014 to 2019 when we eventually passed the main death with dignity act the overall objective of the dignity 50 roadmap series is to provide essential information people need to be effective
(00:38) advocates in their state and this really consists of three topics model language and terminology which we'll discuss today points of view which deals with how people view this issue from differing perspectives and exploring the legislative process um this is really the result of my experience here on the ground in maine um really learning that there are kind of three major areas that people need to understand about the laws and about the death with dignity movement in order to really be it like a super advocate
(01:16) to to really be effective in trying to to work in your state to pass legislation the purpose of this session is to introduce different terminology that's associated with the debate over death with dignity and to
clarify the terms within legal and medical contents context of oregon's model language today's objectives are to recognize and respond to contemporary terminology as it's used in the debate over aiden dying
recognizing how the model language addresses terminology and why it works both medically and legally
(01:53) and finally to recognize and acknowledge uh how you may have personal reactions to some of the information as you engage in conversations with people it's really important to understand the associated terminology and how these words are used and sometimes misused uh during conversations around death with dignity in legislative hearings and as both advocates and opponents talk about the law and that
includes media and how they use certain terminology and of course it's always good to explore our own personal opinions beliefs and
(02:29) reactions uh to the words that people use as we as we engage with other people and then find a way for us to best respond to questions and to opposition messaging in a um thoughtful and respectful way so some terms we're going to look at today death with dignity paleation and terminal paleation v said or voluntarily stopping eating and drinking suicide and assisted suicide euthanasia mercy killing murder and a couple of other terms that we'll cover so the term death with dignity in the united states and i want to
(03:12) really underscore in the united states this term is generally understood to be a death by self-ingestion of lethal medication provided to a qualified patient by a physician through a very specific legally defined process death with dignity was the term that was coined back in 1994 when oregon's legislation first passed and it has sort of uh become the overarching uh way to define the movement uh towards end of life options and the expansion of end-of-life options that include the ability to for a patient to qualify under specific
(03:50) circumstances to receive a medication they can take on their own some key things about this um first of all oftentimes opposition will talk about other countries laws look at what's happening in canada look at what's happening in colombia or the netherlands and really that's um it's an effort to just sort of raise up some smoke and mirrors and cause people to be alarmed rather than to actually talk about the issues here in the united states other countries have more liberal laws than we do but here in the united states death with
(04:22) dignity means that it is a death by self-ingestion meaning the patient takes the medication on their own through their digestive system it's in a lethal quantity and it's provided to a patient by a physician who qualifies that patient in a very specific process the term is also sometimes referred to as physician aiden dying or physician-assisted dying physician-assisted suicide pas is a term that is most often you will see either in the media or it's really a favorite term by opposition because the term suicide sort
(04:58) of triggers an emotional response from people you may hear it referred to as assisted death or hastened death and also medical aid and dying and you may see the acronym the reason i like the term death with dignity number one it is the term that was originally coined and it has defined the movement and number two these other terms for me imply that a physician is more involved than than writing a prescription unless you're talking about you know a hastened death and really the role of a physician in um in in model legislation here in the
(05:36) united states is to qualify the patient appropriately and and then to write the prescription um if if everything goes according to the process and then you know the physician's involvement really stops there in terms of any kind of medical intervention it's the patient and the patient alone who would then ingest the medication if and when they chose to do that the oregon death with dignity act really set the gold standard for aid and dying legislation in the united states the law is very elegant in its legal simplicity
(06:16) the safeguards have been defined by very specific language and and these laws are known to work exactly as intended and only for those intended and and that's the reason that opposition always wants to put up you know decoy arguments and smoke and mirrors is because they know these laws work they know it works exactly as intended and only for those intended and yet they still want to be able to upend the process of of enacting a law more importantly these laws have held up to over a quarter of a century of legal
(06:49) and medical scrutiny in this country again they've been dissected up up and down and sideways they they work exactly as they're supposed to work and it's really a very very simple language and we'll talk a little bit more about that one thing you should note as an advocate if you're on your state legislature website and you're searching for the term death with dignity and you happen to cross the bill that has that term in it you should read that bill not all bills with the either the title or the term death with dignity
(07:20) will be based on the oregon model and i'll talk a little bit about what the oregon model is um so i encourage you to read the bill as an example i believe it's in the state it might be south carolina might be alabama there is a death with dignity act already in place but it has absolutely nothing to do with hasten death it has to do with advance directives and dnr's so you want to be very careful about reading the title of a bill and assuming that it means this particular thing so the oregon death with dignity act
(07:56) achieved two things it specifically defined the process by which a terminally ill patient can qualify with a health care provider to receive a self-ingestible prescription medication and a lethal quantity to hasten their own death while completely safeguarding everyone else so it safeguards physicians healthcare providers the healthcare entity it safeguards family members and so forth and really it is a codified medical standard of care it's a very clearly defined process that has to be followed literally to the
(08:32) letter of the law and then what it did is it took that medical standard of care and it insulated the people involved from civil and criminal codes that that exist in that state if the process is properly used in good faith compliance we'll talk a little bit about what that means so i refer to this as this is not that um you know i studied the oregon law and uh other laws that had been enacted for for almost a year i've read thousands of pages of um testimony and professional journal articles and legislation
(09:11) and and it finally occurred to me how simple this law is it simply says this kind of death under these circumstances is not these other things and the and there's language in the law that specifically addresses this if the process isn't is followed in good faith compliance it's not malpractice it's not a reduced standard of care it's not patient abandonment it's not neglect it's not withdrawal from or withholding of treatments it's not euthanasia or mercy killing it is not suicide or assisted suicide and
(09:44) it's not murder and therefore this kind of death under death with dignity circumstances is not subject to the civil and criminal codes that oversee these other problematic kinds of deaths so it's just very simple this is not that in order for a patient to qualify they have to be an adult legal resident of the state that has the law they have to maintain decision-making capacity they must have a terminal diagnosis with a six-month prognosis as best as a physician can prognosticate and that has to be confirmed by to
(10:25) providers who also confirm that the patient is making an informed decision there's only one exception to that and that is the new law in the state of new mexico if a patient is already enrolled in hospice meaning they are already terminally ill with a six-month prognosis a second provider is not required to confirm that diagnosis and prognosis so that that patient enrolled in hospice would only need to have an attending physician willing to qualify them and write the prescription for them and they have to be able to
(10:58) self-administer by ingestion so this means in in the digestive system it by mouth if the patient can swallow by feeding tube if the patient needs to use a feeding tube but it has to be delivered to the patient under the patient's own power there are additional safeguards in the laws they may vary a little bit state to state there could be required waiting periods most often there's a two two verbal request and one written request requirement but uh but that has recently changed with the law in new mexico and
(11:33) the amendment in california the written statement has to be have two witnesses uh only one of which can be related to the patient by blood marriage or adoption the patient also could not use one of their health care providers as a witness to their written statement so you can have you know a family member one family member it could be a neighbor it could be your your lawyer it could be anyone you choose essentially what your witnesses are doing is they are are witnessing your signature on the written request and
(12:05) they are stating that to the best of of their knowledge you have completed that request free of coersion and that you are capable of making your own decisions as far as they can tell healthcare providers can opt out of participation no healthcare provider is forced to participate and the patient can rescind the request at any time obviously this is a patient directed process and it is entirely up to pic the patient if or when they will take their medication or even if or when they will complete the process of requesting the medication
(12:46) so now let's take a look at some of these other terms palliation and terminal paliation the word palliation comes from the latin palliat which means to cloak this is known as comfort care so hospice care is comfort care it's palliative care the goal of that kind of care is to ease symptoms and enhance quality of life for as long as possible for the patient who is terminally ill there are other kinds of palliative care like if you're involved in an automobile accident and you require a significant
(13:17) amount of care after that accident for physical rehab and recovery of surgery and things like that you may have a palliative care team consult who um and that that palliative care would be centered around helping to ease your symptoms of of pain and discomfort as you go through the process of recovering from your accident but again all hospice care is palliative care or comfort care in nature so this is the point where a patient is ceasing treatments and uh really looking to put their affairs in order and spend some
(13:52) time with their family and have enough time while they are on hospice to you know have some uh final enjoyment in their life and and to prepare for their death terminal palliation is the delivery of medication with the intention of relieving pain even if it ultimately results in the hastening of death for that patient terminal palliation delivers enough medication to the patient to put them in a coma state from which they don't wake up they are they are kept in in that sedated state some patients disease processes are so
(14:31) incredibly painful that their their pain cannot be managed while they're awake this is often offered up as a reason that by opposition as a reason we don't need death with dignity laws well you always have palliative care you have terminal palliation or palliative care but but this is not something a patient can elect you can't sit with your oncologist as an example and say look doc you know i'm i know i'm dying i know you know you've told me i don't have very much longer to live let's just put me in a coma and let me
(15:03) die that way you don't get that option again terminal palliation is a last-ditch medical decision to try to help manage your pain your induced tacoma and then you you essentially starve to death and dehydrate to death um obviously you're not going to be eating and drinking while you're in a coma and fluids are not delivered to you only the medication to keep you comfortable and um and sedated so you know the thing that makes terminal palliation possible is that it is legal to prescribe and administer morphine and
(15:40) other other drugs over specific dea limits in the case of a dying person so it's actually that law which has been in place for a very long time that suggests that it should be very easy to to have a death with dignity law the only difference is in one instance terminal palliation the medication is delivered to a patient via an iv to the point of sedation and in the other the patient receives the medication after qualifying and determines on their own if or when they're going to take it v said or voluntarily stopping eating
(16:18) and drinking this is an intentional decision by a person to stop drinking liquids and eating food for the specific purpose of causing their death it does require strong resolve and support you have to have supportive persons there comes a point where an individual is is too weakened to to care for themselves uh so you have to have someone who would be willing to help you stay you know clean dry and comfortable as you complete the dyeing process it does require sound decision making it um it's it is not possible for a person
(16:53) uh of sound mind to choose this at some point if they later say develop dementia because by that time a person may not remember that they didn't want to eat or drink so this is not something you can you could ask others to withhold from you this is something you have to this is a process you have to be in control of yourself it does require time sometimes like i've actually witnessed individuals who were using v said uh take up to three and a half weeks to die the the challenge is because it can be uncomfortable
(17:29) patients will sometimes think oh well if i just have a you know enough water to wet my mouth and my lips it's not going to be a problem but in fact any kind of moisture can prolong the process and of course death comes by dehydration you know we can only go so long without uh fluids um this is sometimes offered up as an argument by opposition that death with dignity laws are not required it's like well you already have the option to choose not to eat and drink just do that whether we have this option available or
(18:06) not is is not the point the point is we should have expanded end of life options we should have every option available to us that we could choose from in some areas visa is frowned upon either by healthcare providers or family members and and what a terminally ill person doesn't need is to be fighting against um other people's moral views while while they're dying um so i i think you know while v said is a reasonable option for some people it is not something that answers every end end-of-life question or concern in terms of
(18:45) of a haste and death and and i do think it's important that we continue pursuing the passage of death with dignity laws to expand end-of-life options for everyone across the country the next term i want to talk about is suicide which is not illegal and assisted suicide which is illegal this these terms come from latin sui meaning of the self and cdm meaning to to kill so to kill oneself is really the root meaning of the word suicide the reason suicide's not illegal is because if a person completes a suicide there's
(19:22) nobody to prosecute however if someone helps another person complete a suicide they can fall into a lot of legal problems for doing that the phrase suicide is believed to have been coined by sir thomas brown in his 1642 publication religio medici the religion of a doctor but the modern understanding of that term suicide means a person who could go on physically living and chooses instead to end their life sometimes this is the result of mental health problems and sometimes it's the result of a rational decision so some
(20:01) people could argue in a non-death with dignity state that someone who chooses v said is in fact choosing to complete a suicide they are killing themselves by not having food and water opposition loves this term and loves to bring it into the movement and into the discussion from a moral perspective and um and i think those of us who don't see medical aid and dying as suicide should firmly um argue against what they're saying that um this is not suicide and in fact i guess philosophically we could argue until the cows come home whether it's
(20:42) suicide or not whether this is killing of the self or not but medically and legally assisted dying is not considered a suicide so medically and legally certain things have to happen when an individual um uh either either threatens to end their own life or or you know is contemplating ending their own life or if they have done that there may be you know instances where prosecution should take place if someone assisted in that death um what the law does is it specifically again insulates this kind of death from that kind of death
(21:27) so that those things don't have to go into effect so the medical examiner doesn't have to be called the um you know there doesn't have to be a mental health intervention uh with a person who is you know threatening to end their life it's these are very distinctly separate concerns legally and medically and you know obviously it's very important to take threats of suicide seriously and and to make sure that all of the mechanisms that have to go into place do in fact go into place but um but that is not true for
(22:04) a death under the death with dignity act and so every law has a phrasing that addresses that and uh this is one excerpt this actually came i believe from the oregon law or the maine law actions taken in accordance with this act do not for any purpose let me underscore that do not for any purpose constitute suicide assisted suicide mercy killing or homicide under the law then it goes on to say that state reports may not refer to this kind of a death as a suicide or an assisted suicide meaning that a death certificate cannot say suicide if
(22:40) a patient used the main death with dignity act as an example so again this is an example of this kind of death is not that kind of death euthanasia which is not legal anywhere in the united states for humans uh is also it's a term that gets bantered about and it's really it very it actually confuses the discussion um opposition likes to use it they like to suggest that uh um physician is going to inject a patient with something via an iv or a needle to end their life which is not true so you'll you'll often hear this term
(23:20) it comes from from greek origins uh and it meant to have a good death euthanatose a good death originally what it meant was that one could have a good death if one had a good life meaning you know you're approaching your grave with no regrets modern uh interpretation of this word of course includes um uh something different and that is it is the uh the death of an individual that is caused by another individual but that is not it's not murder so euthanasia can be either active which is death by commission or doing something
(23:59) or passive death by omission so an an active euthanasia would be like like when we put our pets down that that is um a commission something is done an injection is given to the animal um and then passive is um by omission meaning things are taken away so it's considered a passive euthanasia to remove someone from life support as an example perfectly legal thing to do but that is considered passive euthanasia in other words it's known that that person will die with the removal of life support um euthanasia can also be voluntary
(24:40) not here in the united states for humans but it's where a person asks for and consents to it non-voluntary where consent is unavailable this is the case of our animal deaths and involuntary which might be against the will of the one dying and that would be like the case of capital punishment if someone was sentenced to die and and didn't want to um i often hear in the movement you know people will will say from the kindest place you know we're we're better to our pets than we are our people and while i really understand the
(25:17) compassionate place that comes from it doesn't actually help the conversation it certainly doesn't help in testimony or when trying to support a bill and i will when i hear it i i will let people know well this is different and then i'll explain you know that my dog rover doesn't come to me at the end of his life and say look you know val i'm i'm tired i'm sick i've had enough and if you'll just put some medication by my water dish i'll take it when i'm ready um we actually make the decision for the
(25:51) animal that you know our animals are injected with medication to put them to sleep and it is not the same euthanasia is not anything at all like medical aid and dying in the united states and of course the model language and the laws address that this act does not authorize a physician or any other person to end a patient's life by lethal injection mercy killing or active euthanasia you'll see this phrase in every currently enacted law in the united states so again this is not that if you follow the the process in the law
(26:28) in good faith compliance you are covered by by the protections of the law if you step outside of that um then then you are going to be in some serious legal hot water if you do something like um um inject another you know inject a person with a medication to cause their death um that's actually called murder and that brings us to the term murder the reason i've included this term in the discussion is because people who vehemently oppose the laws we'll consider this murder they will call it murder here in maine we actually had an
(27:10) experience where um volunteer was gathering signatures at a polling station because we we were going to take the issue to ballot if the legislature didn't pass it and a woman came up to her table and made a disgusted face and said you know this makes you a murderer and it was it was it's a little unnerving you know when a perfect stranger comes up to you and just shouts at you that you're a murderer so i wanted to define this term to make it very clear that this is not that kind of death murder is the killing of a
(27:43) human being by a sane person with intent malice and forethought meaning prior intention to kill the particular victim or anyone who gets in the way of that with no legal excuse or authority so the term murder i encourage you to actually go into your own state statutes you can go to your your legislative website and search for the term search for the laws that that govern your state in when it comes to homicide and read the definitions that your state has has developed for um for the phrase murder this one comes from the state of maine
(28:21) and of course uh the law addresses that again this is not murder and it just says in the law this is not murder it's not homicide and therefore it um it could not be prosecuted uh people could not be prosecuted um as such so some other terms that that i think are really important in um in dialogue with uh other individuals when it comes to talking about medical aid and dying the first term of course is a fact and this is a statement that can be verified or proven by information from multiple reputable sources so an example of a
(29:00) fact is that washington dc is the capital of the united states i i think you would be hard-pressed to find any source of information that would say this is not true an opinion on the other hand is a belief that's held by someone or a group of people it can be contested but but what makes this challenging is oftentimes opinions are put forth as facts or they are stated in ways that make them sound like facts in fact expert opinions can be very persuasive and they sound like facts but an example of just a normal
(29:40) opinion is uh if i were to say to you eating meat is bad for me that's an opinion it's my belief it's something that i have stated simply and i have personal ownership owner over it i'm simply saying for me it's bad where it becomes problematic is if i go on a campaign to try to get everybody to stop eating meat i might embellish my opinions just a little bit so if i state my opinion as an imperative that's that's um i'm stating it as a fact in an authoritative or an absolute manner you know i might have some 8x10
(30:18) slides to show you i might have some cherry-picked facts to show you but an example would be eating meat is bad for everyone so i'm stating it emphatically i'm including the rest of the planet in um in my opinion and um this sort of implies that if you eat meat there's something wrong with you so so no matter how i embellish it no matter how i state it to persuade you it's still just an opinion even if you were to look at the medical research on eating meat or not eating meat um there there's all kinds of differing
(30:56) viewpoints and opinion opinions on it and differing viewpoints is how you can tell if something is an opinion or a fact let's go back to the washington dc example you'd be hard-pressed in any group of people to start a conversation and end up with differing viewpoints on what the capital of the united states is it it's just undeniable but if you were to start any other kind of conversation and end up with a lot of differing viewpoints now you know that you're in the territory of opinions and not facts
(31:29) a bandwagon opinion is where where i might say something like everybody thinks eating meat is bad for you so now i'm i'm getting the rest of the globe to join me in order to persuade you that something's wrong with you that you don't think so if i really want to take it a step further i would i would embellish it with all kinds of emotions and attachments in order to persuade you to take up a particular position so so i might say something like it's ridiculous to love your pet while at the
(32:00) same time supporting the merciless slaughter of poor defenseless animals for your dinner so i have just really embellished it i've cut into the emotional perspective of being an animal owner i have defined animals as defenseless so i'm i am really starting to try try to appeal to your emotional nature to persuade you to change your mind opposition likes to use all of these different tactics and in fact you know it's not just this issue it's any issue where there there are differing opinions and
(32:34) there is controversy you will notice this kind of thing taking place these different ways to embellish opinions to try to persuade people to change their minds so that's the first session out of three the next session we will be talking about points of view where we're going to go into the differing perspectives on on this issue and the debates that take place over it and i want you to keep this these terminology in mind because as you look at the next video which you'll receive in about a week um you will be able to hear
(33:13) uh statements that people make that that really are those kind of persuasive opinions or that are you know stated factually or stated authoritatively that in fact are not facts they are opinions so today we covered the term death with dignity this is the original term given to the oregon law in 1994 it is the term that defined the movement for expanding uh options at the end of our lives we talked about palliation and terminal palliation terminal palliation is not something a patient can opt for that is reserved for patients whose pain is not
(33:51) manageable while they're awake it has to take place in a hospital patient cannot die at home on terminal paliation v said voluntarily stopping eating and drinking is oftentimes offered up as a reason we shouldn't pass an aid in dying law when in fact we we should not only have visa available to us but we should have a death with dignity law available to us as well we talked about the term suicide assisted suicide euthanasia mercy killing and murder and how those terms are inappropriate to the conversation
(34:23) around medical aid and dying and in fact those are most often used by opposition or people who are opposed to the law's passing because they they incite fear and then we talked about the difference between opinions and facts and how to recognize when you're hearing something um whether you can pinpoint it you know it is what i'm hearing true or is it just what something somebody believes is it just an opinion so again uh watch your inbox uh you will be receiving an email in a week from info deathwithdignity.org for the next
(34:59) session and i hope this has been valuable to you when you receive that email you will receive a link in there to provide some uh feedback i i hope you will do that that helps us improve our our courses and in the meantime please visit our website so that you can either sign up on our list if you're not already or you can engage in some national campaign we have going on um or you know learn about what's happening in your state and until next time i hope you enjoy your day and thank you for joining us for this video
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