 Good afternoon I'm delighted to welcome you to today's lecture, which is the next to last lecture in the 27 lecture series on ethical issues in end-of-life care The final lecture will be given in this room next week by Dr. Linda Emmanuel from Northwestern and Dr. Manual's title is One explorers map into the world of palliative care chaplaincy research So if anybody knows chaplains around the hospital past that word along Today, I'm delighted to introduce our speaker. Dr. James Kirkpatrick Dr. Kirkpatrick is an assistant professor of medicine and the physician co-chair of Medical Ethics at the University of Pennsylvania Jim received his MD from Loma Linda University Then completed his internal medicine Residency at Yale New Haven Hospital and came to the University of Chicago for fellowship training in cardiology Jim stayed on an extra year as a senior fellow to do an echocardiography program And while at the University, Dr. Kirkpatrick also completed fellowship training At the McLean Center in clinical medical ethics Jim is the co-chair of the palliative care working group of geriatric cardiology In the American College of cardiology He also serves as a volunteer physician at Esperanza Health Clinic a federally qualified Underserved clinic in north Philadelphia Jim's research interests include ethical issues around cardiac arrest Advanced directives in end-stage cardiovascular disease and echocardiography His publications include I'll just read you a couple of titles Bundling informed consent and advanced care planning in chronic cardiovascular disease Another one deactivation of implantable Cardiovert Cardioverted defibrillators in terminal illness and end-of-life care some of you heard that talk at the McLean conference last year and Another publication in Lancet Medical Ethics and the art of cardiovascular medicine Today, Dr. Kirkpatrick talk is entitled last exit off the cardiac freeway ethical considerations Palliative care and cardiovascular implantable electronic devices. Please join me to welcome warmly Jim Kirkpatrick Thank you so much Mark. I'd really appreciate the opportunity to thank Mark and also Dan for Inviting me to come back to the McLean Center and talk to you today about this Including some work that that we and others have actually done in the field a lot of my ways of thinking About medicine in general were highly influenced by my time at the McLean Center and obviously during my cardiology fellowship here And I I really went into cardiology thinking of ways to try to meld those two fields and Hopefully, I'll be able to convince you that Despite what it may look like on the surface. They're not as far off as as necessarily one would think So I do have some disclosures I try to stay away from affiliations with commercial entities and doing ethics That's not entirely difficult to do. Ethics tends not to pay all that much when it comes to industry But obviously I'm an employee at Penn Medicine, which may have its own things associated with it And I've received some salary support From the NIH and Honoraria from the American Society of Echo So I want to start with a quote. This is came out in the New York Times magazine This is an academic who was writing about her experience and her family's experience with a pacemaker and in her Parents her elderly and demented father had had a pacemaker place and she says the pacemaker Bought my parents two years of limbo two years of purgatory and Two years of hell if we did nothing his pacemaker would not stop for years like the tireless charmed brooms in Disney's Fantasia it would prompt my father's heart to beat after he became too demented to speak sit up or eat And one of the things that was disturbing about this is that the cardiologist When approached with this question, could we just turn off the pacemaker and let him die in peace at absolutely not We can't do that That would be akin to euthanasia So here's where I hope that we can go today along along our freeway Well first of all I want to talk about the devices in general because I know that perhaps not everyone here is entirely familiar with What we're talking about But it'll be brief and then I want to talk about the complexity of deactivation of these devices and argue that it's not quite The same as what we think about for some of the other things that we routinely withdraw And finally I want to talk about advanced care planning and palliative care in patients with these devices and share some of the data That has come out on that So just to start out with this is a picture here of a dual chamber pacemaker you'll note that pacemakers actually consist of This basically little computer here that's implanted inside the muscle in the upper chest in most cases And it has these leads which are put into the veins and they go through the veins and down into the right side of the heart You can have a lead in their left in the right atrium here the top part of the heart and a lead in the right ventricle Or you could just have a lead in the right ventricle Theoretically you just have a lead in the right atrium to it kind of depends on Exactly what the conduction system problem is but you can paste this part you can paste this part and basically restore electrical conduction to a heart that doesn't have it and there's various different indications for this and Here's the dual chamber ICD again You can have two different leads here you can have one in the right atrium one the right ventricle But really the one in the right ventricle is the one that we're talking about if you'll notice here in this schematic drawing Up here. We just have a nice smooth blue thing But here you can see these sort of striated patterns and what that is trying to convey is the fact that you have this larger lead in the right ventricular apex because It actually can shock So this one acts this one will pace and this one will both pace and deliver an electrical shock And that's what gets people out of these terminal heart rhythm problems and then the other thing that we're talking about here is what's called a cardiac Resynchronization device or a bi-ventricular defibrillator and you can see it's quite similar With the exception that there's an extra lead here that goes through the coronary sinus the vein of the heart It's basically inserted backwards backwards the way the flow goes and you can get it down into a vein on the side of the left Side of the heart this is the left ventricle This is the right ventricle and it we can now pace both sides of the heart at the same time Or actually what we do is paste them in a slightly different delay But what this does is it not only restores sort of electrical conduction when there isn't a good electrical conduction But it can actually also allow these two sides of the heart to beat at the right time in relation to each other There's a lot of times what happens in patients who have very sick hearts is that they're really unable to have coordinated contractions between those two Ventricles and even within the left ventricle This part the septum here and the lateral wall cannot contract at the same time And so what we can do is actually restore that contraction with this biometric or device Now I'm not going to go into a lot of the details about these but Essentially a single or dual chamber pacemaker can be Indicated for bradycardia or very slow heart rate when the patient is actually not feeling very well because of a slow heart rate Or they can have various forms of heart blocks some of which can be completely lethal And they really need a pacemaker to to survive They may actually not be symptomatic But we might find that on the EKG that there's this heart block and that would be indication for a pacemaker And then in rare cases we need to give them a medicine that slows the heart rate down But if we do that and they already have bradycardia Then they'll start getting lightheaded or dizzy or going to heart block and then we put in this pacemaker Just as a backup device that allows us to give these other medicines The implantable cardioverter defibrillator ICD really just does one thing and that's shocked the heart Into a into a good rhythm now It is true that there are other ways to get back into a normal rhythm Sometimes it can start pacing really fast and then abruptly stop pacing and the heart will go back into normal rhythm And sometimes but the bottom line is it just treats the abnormal heart rhythms that are coming from the bottom part of the Heart but there are two types of indications for this one It's called primary prevention and that is a patient who has not actually had an event they haven't actually had a bad heart rhythm which is cause them to pass out or Have sudden cardiac death and then there's secondary prevention which they've already had that and now we put this in to prevent it from happening again And then cardiac resynchronization therapy with biventric your pacemaker And usually we have a defibrillator put with that so it is sort of a combo device and that can prevent cardiac death both from bad heart rhythms, but also from progressive deterioration of the pumping function and We show it actually before that happened was we can improve symptoms of heart failure So that's basically our brief overview of if you will the freeways that we're talking about today So what this means? I think particularly from the ethical standpoint we're thinking about this is that a pacemaker is life-prolonging in some cases and Can treat these symptoms and other symptoms in other cases defibrillator is life-prolonging But it really doesn't do anything else In fact if you get an unnecessary shock and can be quite distressing and painful and then the CRT devices They can be life-prolonging and treat the heart failure symptoms And they can actually improve something called the left ventricular ejection fraction and measure the pumping function of the left side of the heart So you can do a lot of different things here And it obviously you have to have the right indication for when you get your device So I want to remind everybody what it's like for a heart failure patient This is a diagram that was developed by Sarah Goodland back in 2004 And it kind of illustrates what a lot of heart failure patients go through so they get diagnosed with heart failure They come in shorter breath light-headed feeling terrible And then they get on good medical therapy and they get onto this plateau phase And they can go a long time feeling good. Well, or they can go short time This is really unclear how long this is going to be but eventually they're going to start deteriorating They might come into the hospital or just the emergency room get a little bit of medicine treatment Then they get back on this for an un-specified period of time But eventually they're going to start having their functional status decline again and again They're going to come back in the hospital back in the hospital back in the hospital at that point They're usually candidates for what are called advanced cardiac therapies and that may be transplant or something called a ventricular Sys device. It's already been talked about in this setting and that might put them back on this This plateau for quite a while, but eventually we all die and that's basically what number five is here At any point along here, they can have any arrhythmia that could kill them and they are predisposed to that So they obviously defibrillators can treat these and prevent that from happening So this is essentially what they're doing here if we think about them little car thing All right now along the way Heart failure patients don't just have these traditional symptoms of this me a chest pain a Dima or swelling the ankles fatigue and Inability exercise they tend to be older. So they have all of these other things too They can have gout and muscle cramps and nausea and obviously when they are critically ill and chronically ill They end up with a lot of psychosocial and spiritual issues as well And then of course all of the social and functional issues and these are all things that are documented in heart failure patients to be really quite common But one of the more disturbing things is the fact that as I mentioned there's this plateau phase We don't know how long it's going to last, but we also don't know when things are going to start getting worse We have a lot of ways of measuring the risk in heart failure patients But the reality is we are much more in this uncertain Opportunity that is the exit. We're taking a lot of time with these patients There's a lot less of this and this tends to be more common and we think about this in other diseases like dementia and cancer But this is the life that heart failure patients live a lot of the time and that creates a lot of problems Is you're planning your life and thinking about advanced care planning as well? And then there's this uncomfortable reality. I love this quote here This was actually a letter to the editor in the British Medical Journal and it was back from a different era which were just starting to do percutaneous coronary angioplasty blowing up a balloon inside a blocked coronary arteries and He was basically right we rescue people from a relatively sudden death from myocardial infarction But we inflict on them a more prolonged death from aggressive heart failure and I would argue that this is even more true now in our era of Defibrillators and and pacemakers is that we are actually we can save people and bring them back But we are in a sense taking away their chance that I quick list quickly and painlessly which was a quote that I learned is I was training here a Brad Knight who is the former head of the electrophysiology department tells all of his patients this now Not the younger people necessarily but certainly all the older ones You have to think about this as you're getting your defibrillator because they're meaning There's meaning to this device. That's just beyond us putting in there in a boarding sudden cardiac death So let's talk a little bit about deactivation When is it okay to unplug? Now here I want to actually have do a little audience participation So I'd like you to turn to your neighbor and answer these questions And I will give you the caveat that these are very generalized questions They are not very nuanced, but hopefully they will generate a little discussion If you don't have a neighbor then you can sort of think about them yourself I'll just give you two minutes to think about this But the first question is it ethical to turn off the shocking function of an ICD? The thing that can actually cause pain when it when it shocks someone and is it ethical when it's requested by a patient or surrogate to do that So talk amongst yourselves for 30 seconds, and then I'll give you the next question Alright, so now I'm going to give you the next question Is it ethical to turn off the shocking function of an ICD? Against a patient or surrogates wishes if ICD function is deemed to be futile very good question Two doctors have said this is futile to continue the ICD function. All right Is it ethical to turn off a pacemaker in these same cases and for that matter Does it matter if the patient's is pacemaker dependent i.e. if they don't have the action the pacemaker? They'll die. They won't actually get lightheaded or feel bad They'll actually die without it and the implicit question here is is this different than the ICD all right? Keep those thoughts in your mind I want to acknowledge the the legal foundation that I had during the McLean Center Fellowship, which was absolutely wonderful and Brona d'Ascol and and Dudley Goldblatt did an amazing job of teaching us the Legal basis for the ethics that we were talking about here and just to remind everyone There's been a number of very high-profile cases over the years dating back to the early part of of the 1900s that essentially established somewhat gradually in steps this right to withhold and withdraw therapy Particularly when it comes to the patient or the author is surrogate actually doing that So we really had right to bodily integrity and right to consent equals right to not consent informed Consents ideas that came in the salgo case the right to withdraw extraordinary Treatments whatever that means the idea of substituted judgment But also contrasting that with some state interests and then of course the right to refuse Therapies and mostly a lot of these were talking about feeding tubes Of course now it turns out that deactivating a defibrillator or a pacemaker is a relatively easy thing to do All you really have to do is take this little computer-like device It's hooked up to this wand you put it over the device in the upper chest You don't have to poke them You don't have to anything to set it over there and you turn it tell this thing to turn it off and there you go Or if you don't have one of these nifty programmers, which by the way used to be sold on eBay Which is a little disturbing, but they they actually took that off You can just put a magnet over a defibrillator and it will inhibit the shocking function and the patient will not get shocked So I would say I have to tape it down or so it doesn't fall off But that's that's really all it is is required But it's really not so easy and after all maybe physically easy, but it's not so easy in other ways This is a really a landmark paper that was done. It's rather simple study they basically looked at they called up 100 next of kin of patients with ICDs who'd actually died and they talked to them a kind of about What was the discussion that went on at the end of life about? the ICD and what to actually do with it and and out of these a hundred basically only 27 are reported that physicians ever discussed the activation before the patient died and They only did so right before the patient died and interestingly there there were eight patients who received the shock from their ICD Just minutes before death now that you know This is a phone call as retrospective wasn't confirmed by interrogating the devices and finding out what actually happened But this is the family's perception about what had actually occurred and it was disturbing because all of these people were dying and yet they were late of them were subjected to these painful shocks in the last days of their life and That was pretty much because nobody bothered talking about this and there may have been more shocks that People didn't know about But it really spurned a lot of of interest in this now one of the other barriers of course has been the whole death panel debate and this idea that If we actually talk about death that we're actually causing it and I just have a problem with that Theoretically and ethically and everything else But I I think this is really raised questions in the minds of the public about what we're doing and created a lot of confusion about that So when we actually looked at providers and asked them some of these questions This is one of the things one of the studies that really got me interested in this from the very early on you'll notice This is from 2003 in the Mayo Clinic proceedings and basically it was it was a very small study They basically identified just a handful of patients who had an ethics consult and The ethics consult was the family or the patient wanted to deactivate their pacemaker defibrillator and the clinicians did not want to do that and so you can see what happened, you know They looked at the advanced directives being consistent with the the request to do it and all of them were and one patient didn't have one and In various cases though the patients died before the device could be deactivated in a handful of cases There was and and there was a lot of issues that came out of this But it became very clear that the electrophysiologists were very uncomfortable deactivating these devices So Nathan Goldstein who had done that other study also did a follow-up qualitative study looking at some of these issues So you intervene interviewed some internists and some cardiologists and got some very interesting quotes out of this One male cardiologist said turning up defibrillator. It's like crossing a bridge It's like saying you know we've gone so far and we can go and you're not going to need this down the road You're traveling and we're going to shut it off There's a finality to actually shutting it off. They were clearly uncomfortable with this A female electrophysiologist says well, I don't know I think it makes it easier because turning it off because it's a sort of a random event in a sense You turn off the deferbillator. You don't know when they're going to develop a bad heart rhythm that will kill them But you know by turning off the switch you're not actually killing the person so this is kind of the other the other side of the coin a little bit more comfortable with this because Turning it off is not killing the patient. It's allowing the patient's underlying disease to actually supersede Then a female internist, I think people just don't think of turning off things that we already started Even though it's like all technology even though we say ethically and legally there's no difference between withholding and drawing withdrawing I think for a lot of life sustaining therapies and it's interesting to use that term in talking about defibrillators in practice It seems like it's different. I love this quote because When we think about these things on the ethics consult service and in ethics debates a lot of time We throw this out that it's no difference ethically and legally But for the person at the bedside for the family and for the clinicians That's not always the case and I think it's important that we recognize that Dan Kramer who's up in Boston actually did a quantitative study and follow-up with this so he actually asked some clinicians and Asked them whether they viewed pacemaker ICD withdrawal as different than chest compressions during CPR Mechanical ventilation dialysis in feeding tubes and you can see that there were differential answers to this so when they when they asked about pacemakers a lot fewer of them actually thought that there was Similarities between withdrawing of the pacemakers. They were more likely to view ICDs as being similar to withdrawing some of these other things And then these are this is actually graph showing the percentage of physicians who lack comfort discussing Therapy your therapeutic withdrawal. So most people except for 10% We're very comfortable with drawing mechanical ventilation feeding tubes a less so dialysis But look at where ICDs and pacemakers either a pacemaker dependent or pacemaker and independent patients Actually ranked there are a lot more people who are uncomfortable discussing withdrawal of these devices than some of the more standard You could say standard things that we think about with drawing Now we actually went implicit in those questions also is is there a difference between ICDs and pacemakers? And we actually send a survey out to members of the Heart Rhythm Society, which is in sort of an international body we got Send out via email here, and I'm sorry. You can't see the percentages very well But actually asked them this question is there an ethical and moral difference between the activating the shocking function of ICD and the activating pacemaker function in the pacemaker dependent patient and A lot of them felt like there was there was an intrinsic difference between the even these two Cardiovascular implantable electronic device therapies Now the Heart Rhythm Society actually came out with an expert consensus statement in 2010 Because they recognized that there was great consternation among their members and just about everybody else in dealing with this So they actually came out very clearly and reiterated many of the same ethical issues that we have been talking about Legally and ethically, there's no difference between deactivating the CID that's the cardiovascular implant of electronic device And withdrawal. There's there's no difference Ethically the activation is not physician-assisted suicide. It is not euthanasia and Therefore as a matter of fact no treatment including these therapies has a unique ethical or legal status and a clinician However cannot be compelled to do something. They don't think is ethically or legally permissible and conflicts with their personal values All of these sort of standard things that we talk about in ethics. We're very much Stated strongly by the HRS in this statement So that may have settled the issue for some clinicians or at least they were told that it should be settled But what about patients? They don't read our guidelines for the most part and Again Goldstein did the same sort of thing and asking patients in this qualitative survey So he talked to patients and one of the patients Said that's if you turn off a device. It's it's like an act of suicide. It's a threat to your life That's like cardiac arrest. That's insane This person had never been shocked. They'd had their ICD for about a year But people were very uncomfortable talking about device deactivation These in fact there were only a few quotes that he could glean from people because they didn't want to talk about it and again Kramer did the same sort of thing from a quantitative aspect and asked is Deactivation morally similar in a pacemaker ICD and then this is the non Non-dependent if you pacemaker isn't working won't die It may just feel worse and again We see that pacemakers and ICDs are actually viewed quite differently in relation to other these things that we talk about withdrawn From their study. They found that many patients characterized deactivation of pacemakers or ICDs as euthanasia or physician-assisted suicide It was a minority, but it was a substantial minority and then over 50% didn't know what the law said about that Which actually doesn't say anything, but that's they were concerned about about that potentially being illegal to do that So we actually in the separate survey of device patients in our clinic at the University of Pennsylvania We said in general what should be done with ICDs if you were in an end-of-life situation You had a DNR now a lot of people said deactivate, but there was substantial minority that said keep it on or it depends And we asked what about if the patient is going to hospice and you can't it's interesting keeping the ICD on Actually got more responses at that point, which is a bit odd and maybe there was some infusion about what hospice meant But I thought it was relatively clear, but I still think that there's a there's a lot of difficulty here in understanding These devices there's a lot of uncertainty just like this near where I live at this point Here's is it what two miles or is it one mile? It's the same exit. I'm sure exactly how that happens But anyway, you know, this is what patients are dealing with when they're talking about these different things So does this constitute letting nature take its course like that female electrophysiologist said we we turn off the ICD and What happens happens? Is it actually prolonging death? Are we shocking people repeatedly hurts most of the time and we're just keeping them alive for no good reason They're gonna die anyway Is it potentially we turn it off? Are we preventing unnecessary suffering? I think all these things patients could could understand and think about But one of the more intriguing questions I find is what is the actual meaning of the device? What does this device mean? We've had patients who have really have given a name to their device Because it's it's part of them. It's something that they identify with it's one patient actually said well it You know it never did me any wrong Why would I turn it off as if you were harming the device by turning it off? It's very interesting So, you know, we talk about meaning there's there's actually work that has come out of the McLean Center on this Some former fellows a long time ago actually came up with this concept of the ICD of pacemakers of biofix Essentially the idea is that it's sort of like property And so the person who has it in there can determine whether or not it should be deactivated or not deactivated kind of like chattel You sort of get to define what it is based on what you would like because it's your property it's inside of you and England and England actually came by this idea of integral device which is kind of similar this idea that it's actually in your body and and Perhaps it has a special status then that that you should think about before deactivating It's not like pulling out a an endotracheal tube and stopping the ventilator, but by far I think the most nuanced discussion of this was actually done by Dan and it was very interesting I don't know Dan very well, but I'm this was a this was basically an editorial that was written on another paper and From everything I know about Dan He's able to in and just an editorial comment on somebody else's paper come up with groundbreaking Incredibly insightful things that now everybody references instead of the original paper So that's basically what's happened and in considering this idea of withholding and withdrawing He came over this idea of substitutive versus replacement therapy and there's a distinction between the two so Continuous and intermittent is one sort of category way that you can think about it Regulative and constitutive is it sort of resetting things or is actually keeping the person alive? And then what is just brilliant from the patient perspective here Is it inside of you or is it outside of you because we send we tend to think of things and as similar But really the patient sees that there's a difference there and has the patient incorporated this as themselves Or they see it as not being themselves But really the substitutive versus replacement therapy also can be categorized in regards to whether this device itself is actually responsive to its environment now for pacemakers you could sort of argue that it is it Monitors the heart rhythm and then it does something both pacemakers and ICDs So it's kind of responsive does that have the the opportunity to grow or self-repair not at this point Not like a transplant a transplanted organ does have have capability of doing that But a device does not at this point Does it have independence of an energy source? Definitely not these things have batteries the batteries wear out. We have to replace them Is it independent from external control as? The devices are getting better. They are but we can always reprogram them and in a sense if they start malfunctioning We have to put that wand on there and reprogram it so Kind of kind of not and then this idea of immunological compatibility You know that certainly they in some sense are sort of that way They're generally not attacked by the body, but that's the case and then this idea of physical integration again Is this really fully part of the person or is it not so I this is really the most nuanced dealing with us I encourage all of you to to read this you are interested in it at all So, you know based on this we actually in our again survey of these electrophysiology Professionals wanted to ask them a number of questions and unfortunately this was an online survey We didn't have a chance to be as comprehensive as what Dan had didn't include all of his things here But we we wanted to try to give them a way to answer this question So is a pacemaker a pacemaker dependent patient? Like nothing else is it like a coronary stent that you just kind of put in there It becomes part of the body and is it applied therapy like an external defibrillation during a code situation? Or is it something that's just kind of keeping you alive like dialysis now obviously there's a huge problem here because dialysis intermittently You know you plug someone up to the dialysis machine and then you take it off And that's very different than an ICD But we were struggling to find something that they can answer quickly and they found They at least the majority of them thought that excuse me that it actually was most like dialysis So though you can see quite a heterogeneity of responses Now this constant is really different than what they talked about with ICDs ICDs they thought that they were not like any other intervention at least a plurality of them said that so again this sort of theme that ICDs and pacemakers have some kind of moral or ethical difference at least in terms of withdrawing them So obviously when we talk about deactivation, this is why I asked you that question is what about unilateral deactivation? We have unilateral DNR In 1999 Texas passed a an advanced directive statute that basically laid out a process in which you could say This patient is is really should not receive any more care They're futile at least we shouldn't be coding them at this point And if you go through this process which involves ethics consultation and discussion with physicians and that sort of thing You can say alright Unilaterally, we are not going to code this patient Well, it kind of makes sense then if they have a defibrillator in if you're not going to code them from the outside Why would you code them from the inside? So, you know and this has become much more important in the era of cost consciousness I see you beds are scarce resource if someone's getting shocked every other day keeping them there when they're taking up a bed And then this says someone pointed out this idea of futile care or whatever that means But we throw that around a lot at least at the University of Pennsylvania so this actually was was discussed somewhat and Quantified now that there's a lot of problems with trying to put a dollar value on anything But in this study they actually suggested that there was a substantial cost to the hospital In these thousand plus patients for those who had care that was deemed futile And they and they basically were kept going and it was it was a substantial Amount 3.5 percent of the total hospital costs for for these patients So it's not a trivial amount of money that we're talking about So we actually wanted to address this issue with our electrophysiology Professionals, and so we actually asked them straight up Is it ethical or moral to deactivate an ICD against patient family missions and the majority of them said no But you'll see that 18% said yes And we asked patients the same question again device patients in the clinic There were only 60 of them in the study, but a fairly similar number also said that this was was not ethical or moral to One person actually said that's not physician-assisted suicide. That's physician-assisted homicide So it's interesting because there may be legal You know it's my knowledge This has not been tried in the courts at this particular point about whether unilateral deactivation is allowed But you know if you go under this statute This or this idea this Opinion that actually came out from Justice Cordozo in 1914 at the New York Supreme Court that every human being of adult Years has sound mind has the right to determine what shall be done With his or her own body that putting this on someone's body and deactivating the device that's inside could constitute battery And you could probably Certainly someone died you might be tried for homicide, but it could definitely at least constitute battery You're unwanted unwarranted touching now the interesting thing is we now have the ability to program these devices without touching the patient Basically through the airwaves now it was that constitute battery kind of depends how you see the device, right? So to kind of wrap up here to some extent I do want to talk about advanced care planning and bring the palliative care aspect in here and talk about this with cardiovascular devices in particular and again restricting it to the electronic Rhythm monitoring devices so we in our same survey of our device patients We asked them in regards to your ICD at the end of your life Have you actually considered what you want done with it or what should be done with it? And of course the vast majority of them said no have you discussed this with the medical practitioner and even a greater percentage that of Course not never haven't had this discussion at all with my doctor about it And actually this is quite similar to what others have found to the bottom line is that physicians rarely discuss the activation of ICDs and Pacemakers and patients don't really think about this. They don't put it in their advanced directive Why should we consider this thing is saving my life and some of it? I think is this my advanced directive is for you not to show up But I think it's because some patients would be fine with talking about it And that's what we found in our thing too. They don't mind talking about this just don't they would don't mind talking about advanced directives And of course advanced directives are not The pot of gold at the end of the rainbow Not enough patients have them as you all know about only about 30% of patients nationally have it now Tends to go up if you have chronic cardiovascular disease or some other disease or if you're older But the reality is not enough people have it and if they do have it as we've seen They don't mention what to do with the devices and there are a lot of complex choices that are not covered in the standard living Will do you want you know all the full-court press at the end of life? Well, what does that mean especially with a device patient? We don't know Motion does absolutely play a role in this and of course there are changing goals of care as people go through their life course They might have different ideas. So, you know, I agree with Halski It's really about the conversation that needs to be had and the reality is Really something that that the HRS document laid out very early on and that is we need to start having these conversations early So they they even gave some helpful phrases to consider Right before implant of the device and what to talk to points to cover and things to actually talk about in advanced care Planning, you know, it seems clearer that this point the device is in your best interest But you should know at some point if you become very ill or another process the burden of the vice might outweigh the benefits and basically You can turn it off at that point After an episode in which you get lots of firings from the ICD again time to read rest this issue I know that your device caused you some recent discomfort and you were quite distressed Progression of the disease underlying disease even if you're not getting shocked by it Or are you having other arrhythmias or now you have heart failure symptoms? It looks like things are not going well We should talk about what to do when the patient or surrogate chooses a DNR order now This is really the time when we need to think about whether we want to shock internally if we're shocking externally And of course at the very end of life if it's not already covered by these other Sections and we need to maybe even suggest that it's time to deactivate So really is Sarah Goodland has laid out very nicely changing in physical exam or finding of the test is the time to talk about this New or worsening symptoms need for another yet another intervention such as you're getting shocked all the time now We have to add a medicine to keep you from getting shocked all the time Maybe this is the time to rethink it complication of the device therapy or side effect And of course if you develop cancer or dementia or something it might be time to think about this So the way I like to think about this really goals of care discussion should be like elections in Chicago and for that matter Philadelphia We need to do it early, and we need to keep doing it, and I don't what do we do then right? So we know that the standard living will thing isn't going to work that is not going to be specific enough now I think we need to have some specific discussions about this and you probably need electrophysiologist to help you because it depends on what the Patient's underlying rhythm is and how the device is said and what the shocking threshold all these different aspects are But we need to talk about discontinuation what to do with DNR what to do when going to hospice ATP is anti-tech and cardio pacing How do we you know do that? Maybe we do that and not shock if that doesn't work We let you go that sort of thing pacemakers in quality of life versus life prolongation again this idea pacemaker dependence They're gonna die without it or do they have it in there just to make them feel better They're making them feel better, and you turn it off even if they're in hospice that doesn't make any sense Why make them suffer it may or may not prolong their life, and there's some data to suggest It doesn't unnecessarily and these CRT or biventric your devices they improve quality of life You might turn off the shocking function, but why would you turn that off if they're actually feeling better? I don't think it has to be like a menu choose one of this and one of that or whatever I think we can integrate this whole thing find out the patient's goals and values and then come up with a plan of What to do with the device consultation with them And in fact Keith sweats from the Mayo Clinic and now at University of Alabama Birmingham has come up with this very nice model He did not do this for ICDs or CRT devices or pacemakers He did this for left ventricular assist devices But I think it works in this setting too because it's kind of all the same stuff if you have device failure If you're getting shocked unnecessarily, what should we do at that point because that may happen What should we do if you have a catastrophic Complication due to something else going on you have a stroke or something like that What if your quality of life is just bad even despite your cardiac resynchronization therapy or what if you develop dementia or cancer? Let's think about this before the device goes in and start the conversation and in fact, this is nothing new and you'll notice here when this was actually written now mark Participated in this document way back when and thank goodness because I'm not sure we a cardiologist would have come up with This on our own but they've said very strongly way back then that all of us should be involved in providing high quality of end-of-life care Preserving dignity relieving suffering palliative care should be a priority And we should be involved in advanced care planning the reality is that doesn't happen very often Unfortunately, but patients also know this is the right thing when we asked our device patients about this Who do you want to talk about your advanced directive for your ICD? Most of them said the cardiologist or the electrophysiologist very smaller numbers said the primary care physician Now I would argue that the primary care physician should be involved in it But as far as the the specifics about what to do with the device it really does require subspecialty involvement But the problem is that oftentimes palliative care in ethics and cardiology are going two different directions on the freeway, right? We have this divider right in between so palliative care in ethics We talk about low-tech things right advanced directive is not not really automated at this point It doesn't have any technology associated with it Humanistic focus it's clearly difficult to study supportive care is important Quality of life is a major metric. It's very inexpensive and we talk about things like the good death Now in cardiology, we are high-tech as much as any other subspecialty. We are very mechanically oriented We are data-driven It's not proven. We don't do it Interventions are where we make our money That's obviously important life prolongation is also where we make our money And it's very costly as a result and rather than talking about the good death We talk about let's just give him or her a chance at life Don't care about the quality of life But we want him to stay alive and what we need here is this beautiful case of the Dan Ryan Everything is going in the same direction and there's no traffic right because this is the way it is all the time going into downtown That's what we need everybody going in the same direction and I'm happy to report that that is happening finally We have this palliative care working group as part of the ACC section of geriatric cardiology There are a number of very prominent academics who are dual-trained in palliative care and in cardiology Kelly and light McGrory at the University of Iowa Sarah Stephanie Cooper at the University of Washington, and this is this is actually going forward Fortunately, and why is this important well palliative care Defined sort of very broadly from the World Health Organization talks about things like improving quality of life preventing and relieving suffering early Identification and assessment and treatment of pain and other problems addressing physical psychosocial and spiritual issues Well, guess what heart failure patients have They've got all of this Why shouldn't palliative care be a priority in these patients? Well, it should be So we need to go from this This is the old model of thinking about palliative care which I think most of us in cardiology still have in fact Some of my colleagues I've told them that this is no longer the model I've told them again and again and again and they keep saying that this is what well I guess we're going to hospice now because there's nothing else to do or get probably care on board because now We're done. That's not the way to think about it. We don't stop here and go to hospice What we do instead and this is the way we need to change it is we have life prolonging cares continues But palliative care starts early and keeps going and perhaps the ratios change over time You may eventually get to the point where you go to hospice and the patient dies And then of course bereavement care is incredibly important in hospice But you have these two things happening at the same time. They are not incompatible So essentially I think what we have here is the opportunity as the patients going along to have the palliative care Intervention go along with the patient and make this ride a little less bumpy And you can see where I think they need to come in if they don't if not here Then certainly somewhere on the plateau phase and not necessarily when they're out here at number five So in my humble opinion what we really need is several things We need primary prevention palliative care and that really is probably the cardiologist finally getting involved with this and Preparedness planning. I think Keith sweats has got the idea and Mark mentioned an article that we wrote in Jam internal medicine This idea of bundling advanced care planning and informed consent all at the same time because ultimately Advanced care planning is informed consent, right? We're going to put this thing in and yes There's a certain number of percentage of complications that you might have leading infection and death But the other part of informed consent is at some point this may stop working for you and we need to think about what to do at that point Palliative care and ethics we need to think of this not as the passive and do nothing and you know Well at the end of the line these are actually interventionists, right? We have cardiovascular interventionists They're putting stents and people left and right and putting in all these devices and new valves that are put in through The veins and the arteries and that sort of thing well palliative care needs to be thought of as being Interventional and we have this idea in cardiology when someone's having a Heart attack that they need to get into the cath lab and get that artery opened up And there's a certain door to a balloon time And if you're over 90 minutes door to balloon time then the patient's quality of life and their chance of living is worse We need to have a door to advance care planning time when they come into the hospital and start thinking about it in that way And we need to have more cardiovascular Specialists as trained as ethicists and we need to have them thinking about doing palliative care more often But this requires education and training and there's a number of initiatives underway There's something called cardio talk, which is basically based on this idea of uncle talk from oncology world And that's being done actively there was actually presentation at the last American College of Cardiology From the people at the University of Pittsburgh who had a weekend training seminar rated extremely highly by all the cardiovascular Practitioners who went through it. They're really teaching them communication skills at the end of life And we need to have new models for advanced care planning cardiology I believe very strongly we need to empower inpatient nurses to do this now They don't necessarily have to write the DNR order They don't have to necessarily sit there while the patient fills out the advanced directive But they can bring up the issues they can help guide the patients into some of these decision-making things I think that will help our advanced directive percentage is quite a bit and one of the things We're really struggling with now is you know, we have an outpatient oncology palliative care clinic We have nothing like that for cardiology, and I think that's what we need We need more outpatient palliative care again that allows it to happen earlier in the process I think that would be very helpful because ultimately this is the exit that we want patients to come off of We want them to come off and have hope maybe not hope that they're going to survive But certainly hope that they're going to have their symptoms treated and somebody's going to walk with them during the end I just want to leave you with this final quote, which I share a lot from Mark Whatever else medical ethics or palliative care is it must have something to do with the practice of clinical medicine or at least it should So I thank you very much for for your attention here. I'm happy to take any comments or questions that you have The biggest problems are our cardiologists who are uncomfortable turning off Machines even when the patients or their circuits want it. Is that your experience as well? Yeah, I think that's really changing and Maybe it's just our institution But I think that as palliative care as ethics in general is really becoming more of an issue for cardiovascular practice That people are getting a little bit more comfortable with that. I think the younger generation I worry sometimes you can see this is actually is a picture of when I had my aortic root replaced And I was in the hospital and so I was kind of on the other the other side of the Nobody came up to me and said, you know when you're leaving the ICU or something like that But that's because I work there and they know me But I get a little bit worried that maybe we're sort of pulling the pulling things off a little too early In the next generation, but I don't think that's the main reason that I'm less worried about that about people being They're being discomfort with discontinuation And I think that I think in general Some of what happens is I just put this thing in and now you're now you want to turn it off Like what what are you thinking that doesn't make any sense? Part of what is going to be interesting going forward is If you are in a situation like that and palliative care and ethics are trying to support the autonomy of the patient And the physician is still uncomfortable whether it's because I just put it in it does make any sense Or I feel like this is physician-assisted suicide of youth in Asia. How is that interaction going to happen? And we're actually from the ACC trying to involve get a discussion through a survey of Members of the American Academy of Hospice and Palliative Medicine To really talk about their interaction with cardiologists. What are these barriers? To providing palliative care in general not just Deactivating devices. I'm hoping that we'll get some good information about that and I can give you a better answer next time I wish we had data. We don't and To my understanding nobody has really done sort of a more Qualitative and focused group thing or done that and then done more of a quantitative Look at why people are uncomfortable with that I think it my impression it has to do with this constitutive nature that people really feel like this is keeping the person going And in a sense it is but so is a ventilator and so is dialysis And I don't I don't have a good explanation for why other than maybe again It's the internal versus the external thing something that looks like it's applied because it's sticking out of their mouth Or you have to hook it up And so it's we began to sort of look at that But I think there's a lot more work that needs to be done to explore that Everybody says and other people shown this to there is no choice. The person's dying. We're putting it in And a lot of these are because in the prior era they were doing crash and burn patients now We're doing patients who are not quite as sick and are not dying So there is a little bit more of a deliberative process, but most of the time by the time they get to the advanced Mechanical Circulatory Sports Center. They've already made that decision. So they're gonna have it So I don't know if that's I think it's still useful to do something like that because They'll be prepared when those decisions come later on down the road for defibrillators and pacemakers Particularly defibrillators. I think there is a chance and as you know There's there's a lot of decision aids out there trying to help people understand Well only one out of eight people will actually get a shock that saves their life Most people think it's at least 50 percent or a hundred percent, which is not true And these many people will have inappropriate shocks that they don't need and yet is painful and all that and those are fine I think decision aids are wonderful, but they don't really address advanced care planning So I think that that might even be a better way to Allow the patient to make value-concordant decisions about defibrillators than our traditional You know sort of way of presenting the data about how many people will benefit and how many people won't so yeah I think there is a chance for that happening. That's another thing that we're sort of cooking around as a potential Project to look at and one of the outcome measures would be how many people decide not to have it So first of all, I actually and I'm sorry. I definitely Didn't convey my personal feelings about that too. I was attempting to present an argument that actually is not mine I also don't think that we should consider national coverage decisions and Money and all that when we're at the bedside talking about patients Dan has written extremely other eloquent Article arguing against bedside rationing and I fully support that Concept I also think that we we need to I think we need to kind of Other people very much disagree, but I think our duty is to our patients first and foremost But that they argument is very much out there nonetheless in in terms of I'm sorry. What was your second point again? I remember the battery so they're Shorter battery life. So there's many things in that right right now. There's a lot of discussion about this idea of not replacing The pulse generators now, it's very easy to replace them. It's not a huge surgery But there there now is a need for discussion about really before it goes in What are we going to do? Are we going to replace this when the battery wears out or not? And sometimes we can predict that it's going to wear out sooner than later depending on how much Pacing is happening or whether it's backup pacing or whether they're going to get defibrillated or all that all those sorts of things But that is very much a conversation that's having now and again We may look at this in a very broad sense and saying replace not replace turn off It's all ethically similar, but it feels very different There also are Something else that we've sort of looked at is what about reusing pacemakers The battery life is not a hundred percent anymore, but many of them have lots of Battery left after they're taken out of somebody who's just died Why not put these in really old people? It'll make them feel better for a while, and then you just don't replace And then the third thing is in some cases you actually want to replace because without the pacemaker They are really symptomatic and they may not die, but they're going to feel awful And so that may be actually a palliative measure that actually needs to happen with these patients So that's kind of the wet. Does that does that makes when you make the decision? Absolutely, and I should have shown this but there actually have been studies Looking at what happens when people have their pacemaker function turned on and off with their ICD and there really is no difference in time to death So it and but it probably even in that study. It's really variable So again, this would be that underscoring the point that I would make is that if you as a cardiologist or I as a cardiologist go okay, they're often hospice or would palliative care has them now. I'm done That's a very irresponsible thing to do because they still need guidance about these these issues They're not going to interrogate the pacemaker and figure that out I need to do that or have that done and then give them that information so that a decision can be made It's got to be a partnership Yeah, I'm a little bit confused about some of the comments that were made about with holding Like life support system. It seems like with the pacemaker There's we're concerned about that and with the ventilators It's not that from talking to people that I've seen in that that there's a lot of Concerned about whether you turn off a ventilator or not if somebody in the family unit for an advanced directed is complaining The hospital is not going to probably do there's going to be some questions. So it's I got the I don't think it's that easy to turn off life-supporting Devices Yeah, yeah, so that's really getting at this issue of unilateral Deactivation unilateral DNR unilateral withdrawal of really anything and I think it does become very complicated And you know, I wish that we'd actually ask them that question about So if it's not right to turn off a pacemaker to fibrillator against patient or family's wishes Is it okay to do these other things like withdrawal to ventilator? I suspect although I don't know that they would be more comfortable with that than they would with turning off the pacemaker I should defer to Dan on this answer actually because he's thought about this more than I but I think there is actually when I was a Chief cardiology fellow here. I invited a Philosopher to come down and talk about the meaning of the heart in Western Literature and so he gave this very long and very eloquent discussion about the meaning of the heart and the centrality of it And the thought and the way that we've thought about this over time So I think you are you know when patients come in on my ticker is not very good You know, I understand that I'm sick on the other hand I think now recently we're getting much more the sense of we have all these bells and whistles and toys Why can't we keep the heart going forever and in some cases we slam somebody on extra corporeal membrane oxygenation We can completely take over their circulation now They will probably die of sepsis or something else, but we can keep that heart going We can replace it with the total artificial heart in some cases all those patients don't do well But we can do that so on the one hand we have this interesting paradox People understand it when their heart's not working. It's central to existence on the other hand There's so much we can do to keep it going I think patients are very confused in how they're thinking about the heart these days and rightly so