BTK_PC.E4_Journal Review in Surgical Palliative Care - 2023 Pediatric & Adult BD DNC Consensus Practice Guideline_Recording

BTK_PC.E4_Journal Review in Surgical Palliative Care - 2023 Pediatric & Adult BD DNC Consensus Practice Guideline_Recording

[00:00:00] Hi, everyone, and welcome back to another episode of Behind the Knife. I'm Virginia, and I have Dr. O'Connell here with me today. We'll be discussing the 2023 Pediatric and Adult Brain Death Consensus Practice Guideline, which was a joint effort of the American Academy of Neurology, American Academy of Pediatrics, Child Neurology Society, and Society for Critical Care Medicine.

We'll also be piecing together the implications of the new guideline update on how we communicate with patients and families about brain death. To help us with this conversation today, we've brought in a special guest, Dr. Sarah Walster. Dr. O'Connell, I'd like to let you introduce Dr. Wester. Hi everyone.

Dr. Sarah Wester is an associate professor of neurology at the University of Washington and a neurointensivist at Harborview Medical Center in Seattle. She is the program director for the Neurocritical Care Fellowship and we are delighted to welcome her to Behind the Knife to discuss these 2023 updated criteria for death by neurologic criteria.

Dr. Walsh, is there anything else you want our [00:01:00] listeners to know? No, thanks so much for having me. I'm excited for the podcast. Lovely. So let's jump in. There are a few ways in which the 2023 guidelines are significantly different from the prior 2010 adult and 2011 pediatric guidelines. Firstly, it's worth mentioning that the 2023 guidelines provided unified criteria for both pediatric and adult patients, and they were formulated collaboratively by this multidisciplinary group of pediatric and adult neurologists, intensivists, and neurosurgeons.

And one of the major goals of formulating unified guidelines was to increase public trust in brain death or death by neurologic criteria. Dr. Walser, do you have any context that you'd like to provide us with about the genesis of this unified guideline or how the decision to provide a unified guideline came about?

Sure. Yeah, brain death. It's interesting. It's evolved for almost over 50 years. One of my attending son as a trainee actually said it's an artifact of critical care and good ICU medicine. And it emerged when mechanical ventilators evolved before that they would just become hypoxemic and arrest and it was [00:02:00] possible.

To maintain them on mechanical ventilation and support other bodily functions. Guidelines have evolved over the years, and there have been a set of guidelines. Most recently, AAN practice parameters in 95 and 2010. There were also sets of pediatric guidelines that were Most recently updated in 2011. I think an ongoing challenge as we define this concept more provided clinical guides, step by step kind of met measures.

A real ongoing challenge has been the variations and deviations from practice and the variability in practice. And ideally the goal with brain death is similar to cardiac death, which in many ways is more than simple is to have a universal protocol and universal adherence. And along these lines, men must practice.

Variations, but also deviations and the room for any potential errors. It's still, I remember being a resident, I trained at two hospitals and between those two hospitals, the guidelines were different. And just, you know, I think talking to colleagues across town, there are little things in their tweaks, but I think with these variations [00:03:00] evolve kind of margins for, blurred lines and uncertainty, which should not be the case in death.

There was a preceding publication, the 2020 World Brain Death Project. You may have heard about it, but that was published in JAMA. And the lead author is the same as the lead author for the 23 Guidelines, Dave Greer, but it was this worldwide group and several world federations joined. And that was kind of a consensus statement to emphasize the importance of making it more universal and really becoming very specific and elaborating on a lot of things such as, you know, temperature management, ECMO, the importance of communication around it, and topics that hadn't been addressed.

And often the topics that happened before kind of touched on in previous guidelines, they became much more specific. And this World Brain Death Project actually served as the basis. It developed in parallel with the guidelines. The guidelines were also in the works, but a lot of the material from that was also incorporated in the guidelines.

Yeah, I did read about the World Brain Death Project. You know, brain death can be such a tricky concept to explain to patients and families and even other clinicians. Families are already processing so many intense emotions [00:04:00] about the severe injuries that their loved ones have sustained, and I think it's really important for us to have consistent languages and messaging from the whole team about what brain death is and what it means for a patient, especially when we have difficult conversations with families.

So I know that the panel for the 2023 guidelines chose to use the terms brain death and death by neurologic criteria. death by neurologic criteria interchangeably to both adopt the commonly used phrase of brain death and help emphasize that a determination of brain death means that a death of the person has occurred which is equivalent to death by cardiopulmonary criteria and meant more than death of the brain only because it sounds like there is some confusion from the general public about that.

Can you talk about how that kind of evolved over time in the field of neurocritical care? Yeah, the terminology, I think those terms were, as you said, it's actually exactly as you phrased it, I think were put side by side to really kind of emphasize the permanence. And then in terms of the terminology also, before the term irreversible is used, and there's [00:05:00] actually just, you know, a paper on the discussion, elaborating on the discussion on why, or a big part on why permanent was used to really emphasize, you know, that there is no going back, that it is permanent, you know, that no, Extraordinary measures would be dedicated for that.

That is the state and kind of pinned towards, you know, resource utilization in that context, especially when it comes to challenging scenarios such as the ones that you highlighted with, you know, families being confused, coping and having a hard time grasping the concept. Dr. Walser, for our listeners we're all surgeons who listen to this podcast.

Would you mind just reviewing the overall steps in the process for brain death testing, highlighting the appropriate timing and sort of the process that one needs to go through to make this diagnosis? Sure. And the guidelines highlight seven different domains. Including terminology providers who can declare special considerations, but the real four [00:06:00] main key steps the prerequisites to clinical examination the apnea testing, and then answering testing as applicable, I would say the major kind of domain, my mind is really the prerequisites, and there are so many factors that go into that, and when we talk to other colleagues, That are, you know, from the OPO standpoint or from the hospital standpoint on QI committees, they say the prerequisites are often wants where providers are confused or are unsure or sometimes rush into it or, but the prerequisites really center around First of all, making sure there is a proximate cause.

It's clearly established both in terms of history and neuroimaging. And it makes sense that there's no, you know, confusion about what's there in imaging and that it fits with this permanent brain injury. There are in some cases observation times and the guidelines elaborate on that, especially in the setting of TTM or other confounders.

But there are comments on observation times and the guidelines actually specify that the pathology should be taken into account. For example, if you know, as Dr. Cohn, you had a trauma, you know, on the trauma service and there's someone with 10 bullets [00:07:00] through their brain, that is a very clear etiology. If it's someone, you know, where it's a little bit more kind of diffuse cerebral edema or a stent.

I think it's all something the guidelines write about. If it's someone where you immediately try an intervention, someone with subarachnoid hemorrhage gets an EVD and you do CSF diversion, you shouldn't imminently proceed to declaring. So usually there are some considerations in terms of time. And then in addition to the time window and establishing the approximate cause, that really makes sense.

The majority of prerequisites revolves around ensuring that there are no major confounders. which are usually hypothermia and sedation, or metabolic derangements. And then last, there are also blood pressure targets that should be met. With regard to the clinical examination, it's mostly geared around brainstem function, but you know, there are also kind of, you know, motor responses assessed, and it's important to kind of, you know, get experience in what motor responses can and cannot be seen.

And then apnea testing is, you know, usually there are specific PCO2 thresholds that again are now completely delineated in the new guidelines. The guidelines also now specify that an ART line should be placed, which I was a big fan of. I really, I [00:08:00] like doing that both for the clinical exam to make sure that the blood pressure threshold is good and for being able to obtain a gas, an ABG.

And then last, ancillary testing, which per the guidelines should be obtained if there is any doubt or inability to perform any other portions of the exam. Looking at papers that describe protocols across countries, and some countries. Some ancillary tests are mandated or in pediatrics, often they're done more frequently, more commonly.

But those are kind of the motions we go through. And I think a big other part, you know, it's hard to kind of pinpoint it down in the guideline, but in reality is the communication that happens in parallel with the families about, you know, informing them what it means early on, not too early on jumping to anything.

But introducing the concept, guiding them along there is a statement in the guideline about consent and that it should not have to be specifically obtained. And that has been a point of confusion. You know, I've seen it in my practice where some have asked for that. But if you think about it, if someone has cardiopulmonary death, you wouldn't consent the family to assessing it.

So it's thought to be more of an assessment. [00:09:00] But I think what is important is assenting a family and trying to find them. Same as you would if any other patient is really unstable and dying, you want their family to be there. And I think just communicating that, you know, making sure there's often concepts around brain death, you know, culturally, from a religious standpoint, from a personal experience standpoint that are challenging, but just guiding the family through that.

And then at the end of it, sometimes there's that piece of organ donation, which in the beginning as a clinician, devaluation of brain death DNC is separate from that, but it becomes a relevant factor and, you know, often something that is important to families and can save lives. But coordinating all of that is always challenging.

I think usually just going by step by step fashion, following protocol, and allowing a reasonable amount of time is usually key. That was really great. I do, I want to highlight one thing that you said, since this is a surgical palliative care subspecialty group which is the concept of a stent and how we use that in surgical care in medical care in general.

But really, it's how you [00:10:00] present the next steps in treatment. Whereas, you know, on one hand, you might approach a family and ask for consent, versus approaching a family and saying, this is what we are going to do next. We're going to be proceeding with brain death testing. And nine times out of ten, they're going to agree with that and proceed.

They always have the right to object, but it's just a different way of presenting our next steps in treatment. Yeah, I also think that one other really interesting thing that I read in the guidelines, and I want to circle back to a lot of what Dr. Walser was saying before, but the guidelines state that the process of determining brain death begins with the presumption that the patient does not meet criteria to determine brain death, and that each step, of these four main groups, the prerequisites, the clinical exam, the apnea testing, and the ancillary testing, basically serves the function to disprove that initial base assumption during the process of determining brain death, which I felt [00:11:00] was very interesting, and I don't think is something that we always communicate to patients at families.

Yeah, no, you're right. And I think you know, they defined it and they said it in several places. And then there's some opinion places that the authors wrote where they commented on the thought that went to the guidelines. But I think they purposefully wanted to make this very conservative and, you know, very strict to just really reduce or eliminate any kind of false positives.

And, you know, just really make sure that this is a serious, because I think once there is false positives, if there's any corners cut and, you know, if there's, you know, some of this also about public trust. And just the experience of the family, because, you know, even if there are cases sometimes where, you know, someone does have a cough and it's not fully brain death or has a little bit of perfusion on a nucmed, and mostly those patients don't recover to full dependence, right?

But I think such cases, it's really tough to, you know, guide a family through something so devastating. And I have to walk back on something like this. You know, there are also public cases where, you know, full recoveries have been reported, some are a bit in the sensational press, and then sometimes it can be, you know, someone has an opioid intoxication or some sort of rare form [00:12:00] of Guillain that there can be brain death mimics where patients can have recovery.

And so I think it's just very important to come in with the assumption. Wait a minute. And then trust and verify. You know, it's happened so often to me that someone, you know, came to me and said, you know, can you do the exam at this time? And the temperature and the medications are okay, there have been no meds.

And then when I looked at the mark, I was like, oh, wait a minute, there was something hanging, you know, drip two hours ago, or there's no talk screen. Like, how about we check it? And so I think it's just this trust and verify. And like you said, you're kind of alive until proven otherwise. Yeah, so the new guidelines are specifying that, you know, a brain death evaluation shouldn't even be performed if there's any evidence of preservation of any brain stem reflex, any motor movements mediated by the brain, any evidence of spontaneous breathing, any evidence of consciousness.

I'm curious, Dr. Walser, if you feel like in your practice, After the new guidelines have started to get implemented, whether you have seen the process of brain death testing or even evaluating whether a patient should be tested for brain death become more arduous or more involved after the new guidelines have [00:13:00] been implemented.

That part per se, I have to say, I haven't observed. That may also be because we work at a tertiary academic center where, you know, there are very detailed guidelines and the providers. Clinicians that are involved usually have a lot of expertise and we actually have an institutional protocol that does have a checklist that requires checking for the approximate cause.

And then a nurse is also amazing. They experience, you know, they will come and say, Oh, there was some over breathing or cough or something on the ventilator. You know, usually you wouldn't go, you know, you would, you know, You know, it's a very time intensive, again, emotionally hard process on the team, on the families.

So you wouldn't go through that. The one thing I have kind of imminently observed, which is interesting is the guidelines that specify the number and also competency of providers or the providers that clinicians that can declare, and they commented on trainees as well as APPs. And mainly to emphasize the importance of clinical competency among providers who perform it.

It didn't go beyond that, but what I have seen at our institution, there have been very thoughtful discussions between neurosurgery, surgery, neurology, you know, our associate medical director program directors about how we [00:14:00] teach trainees to become competent, how we assess clinical competency, and how we ensure that trainees still get the exposure while ensuring that there is adequate supervision.

And I think credentialing pathways will be formed. We're working on one internally, and I've spoken to collaborators elsewhere, where there's a lot of talk about, you know, how do we make sure, you know, kind of like you log procedures as a surgeon and become proficient, you would log your brain death exams.

And what I have seen is when I had a brain death eval, several attendings would text me saying, I have a resident on my team, can they come and join you? And really making this an event and involving trainees. The other challenge is that over the life, the span of training of a trainee, not every one of them may get a sufficient number and we don't even know what a sufficient number is but then supplementing that.

So we've been working on our simulation. One of our fellows actually working in a virtual simulator. But, you know, I do think kind of, if you think about neuroprog has to be multimodal, I think brain net testing has to be multimodal. Nothing can replace teaching at the bedside, but then, you know, there would also be didactics, simulations, a course, Neurocritical Care Society and that was developed with the [00:15:00] writers, lead writers of the guidelines has put out an education brain as toolkit, which is actually free.

There is a course that costs something but there is the toolkit is supposed to be free and the goal is that this is accessible and available to clinicians that desire to learn it. But that has been the most, interestingly, I didn't think it would necessarily be that, but that has been the biggest change that I've observed on the ground in the hospital, that there's been a lot of debate about that and who can declare and how to make sure that people learn to declare.

That's really interesting. I know that you've mentioned some of the major changes that these guidelines have brought forth already, but do you mind just stating like the top main changes that bring back to mind? as a topic does come up both on like our in service exams and our surgery board exams, and I think it would be helpful to our listeners to walk away with the take home changes from these guidelines.

Yes, for sure. I would say mostly they're very specific and just go into details on some areas that were, you know, Kind of mentioned or hinted [00:16:00] at in prior guidelines, but where they just provide specifics and they start with the terminology or, you know, just talking about the approximate cause that it needs to be established with something we kind of all knew or thought about.

But I think the guidelines really does time to say it and then they provide specific guidance for example, temperature where they specify temperature, but not just the temperature, but also saying a minimum time. It has to be like that for 24 hours. Which, interestingly, was in our protocol already.

They give some very specific guidance around ECMO, which first appeared in the JAMA World Brain Death Project, and now, you know, is in the guidelines. And then to speak a lot about etiology, they did change the blood pressure parameters. So it was an SPP OR map goal and became an AND. And similar to PCO2 parameters for the apnea test, it was an OR and now it became an AND.

And then for apnea, they actually did specify the criteria for retention. They did, again, make that comment about APP's trainees, but then really emphasized competency. And they did kind of, leave a little wiggle room by saying, you know, it depends on the state's laws, the regulation, the institutional, but they did emphasize that.

They commented on ancillary testing and [00:17:00] emphasized which types are acceptable. And the major change is that EEG is no longer an acceptable ancillary test. And that in the initial definition was one of the core four things, but EEG is susceptible to the main confounders, hypothermia, sedation, metabolic derangements.

It is confounded by that. So EEG has fallen out of favor. And then they do emphasize that CTA, MRI, MRA are not sensitive enough. And that is something I think, again, a lot of people knew it wasn't, but it wasn't ever explicitly stated like that. And it is something that has been commonly observed as a mistake or deviation.

They did specify kind of just like little procedural things. So the conduct of the apnea test, there's just many ways to do it. And so they became very specific. And for example, said you have to have an A line in there. But yeah, I think in general, it was just very, very specific. They did provide also some lab cutoffs and parameters.

For example you know, there was a table with the half lives of the medications. The lab parameters, interestingly, were derived based on a survey through Neurocritical Care Society and seeing kind of what the margins are. And I think they just erred on very extreme kind of things. You know, just made it very kind of clear and extreme, but acknowledging, you know, it's sometimes hard to say [00:18:00] exactly where the labs need to be, but those are some kind of the major changes in general.

And I think it's all kind of with the emphasis on wanting to make sure people are thoughtful and take their time and don't rush through it. And then sometimes being very specific and things that were initially just like generally said, like, you know, you do an apnea test and it should have this threshold, but now it's kind of very step by step.

And I think that'll be very helpful, especially to providers that don't do it as frequently. I think I could definitely see and ask my question being which of these ancillary tests is not acceptable for diagnosis of brain death, with EEG being one of the answers, the answer. Yeah, one of the listed reasons for EEG being struck from the list of acceptable ancillary tests is that the primary determination of brain death in the clinical testing is testing for brain stem function.

And the concern with the EEG assesses function of the cerebral hemispheres, but it does not evaluate brainstem function. And the whole point of performing ancillary testing is to validate your results in the case that there is [00:19:00] inability to fully assess brainstem function for whatever reason, because the brainstem reflexes that usually are tested are the pupillary, corneal, cough, gag, oculocephalic, and oculovascular reflexes.

And some of those reflexes are difficult to test in patients with severe craniofacial trauma or other confounding factors. So actually I don't think EG was necessarily aborted because of that. You know, usually the point of ancillary testing is to, you know, get additional data if there's concern for confounders.

And I think EG is just affected by these confounders. The other thing I would say, having used EG in the past is that the filters you have to put on for EGs are highly sensitive. So it's not uncommon that you get some sort of event artifact or something, and then you're kind of stuck. But my understanding is that I think EG fell out of favor or is no longer thought to be acceptable because it's susceptible.

You know, I actually sometimes. have looked at EEGs in patients with pontine hemorrhages, because if there is a lot of cortical function that is obviously there you know, I haven't used it as an ancillary test, but, I had a case where there was, you know, a very difficult family situation. It was a very young patient.

It was very challenging. And where we [00:20:00] were waiting for a family member to come, where we just kind of got an EEG just to make sure that there is no cortical function. But then you hinted at this concept of brain stem death. So I don't think it's necessarily for that because like, let's say you did put an EEG on for whatever reason, you know, they had twitches.

And there is obvious cortical function that doesn't mean that you should proceed. That's actually the opposite. But yes, something that the guidelines do elaborate on and specifies this concept of brainstem death. Brainstem death is actually in some countries. That is the way to declare the U S and most other countries are whole brain death.

And I think that's what the guideline emphasizes, but the UK, for example, and I think there's five or six other countries that declare based on brainstem death, just saying in their mind, if the brainstem is gone. That's it. But that can be tricky if you have, you know, a locked in kind of state and it could be cortical function.

That's really interesting to hear. Thank you for providing some more detail and clarifying because that's definitely something that I wasn't aware of as a surgical resident. So it's interesting to hear that there are so many different nuances to this and that there are countries where practice is different and I'm sure that world practice will evolve over time [00:21:00] as we have more of these type of consensus meetings, consensus guidelines, and people have more conversations about what the right way is to do this.

I am curious, Dr. O'Connell and Dr. Wellster, you know, you've talked about sometimes there being the potential for false positives or for example, an EEG picking up some kind of cortical activity or, you know, sometimes nurses see things, families see things, family may say, oh, well, I saw my relative move their fingers or I saw them turn towards me or some other similar thing.

How do you put that in context of the patient's clinical status and communicating with the family and in the case that the clinical team does have reason to suspect? I think that's a great question, and I'll just say from a palliative care standpoint, it's all about setting expectations up front and counseling the family members what to expect during this test.

A lot of times the family is present and we involve them for the brain death testing, the clinical exam. I'm curious with [00:22:00] Dr. Walter, what you tell families to set the expectations before the exam starts. Yeah, I fully agree with Dr. O'Connell. So, I think just communication up front and preparing families and involving them is really important.

And just setting that expectation up front, because yeah, Dr. Wong, you're right. You know, many times family as they're going through a grieving and coping process, when they do see a movement, or sometimes it's a tear, right? But they're saying, Oh, they're doing this or, you know, they often get fixed on the vitals and the blood pressure in the heart and the fact that the heart is still beating.

And then they really focus on the heart rate and we'll call you enough questions. But I think especially if you see movements, that is something where families that are coping with a devastating loss or suddenly get hope. And I think so as you explain that you're assessing that you're concerned about progression to brain death, DNC, that you're planning to assess, So I always offer to families that they can watch.

I would say families are very different. And there are some that really don't, but there's a lot that really do. And usually, and there's some data that allowing families to watch. And, you know, it's [00:23:00] small data. It's not perfect data, but that it helps or gets buy in or closure or agreement with that concept more so.

And I will say that whenever I do start that assessment, I do usually hint. At that movements can be seen or even when you have the goals of care conversation and talk about introduce that concept, you talk about what it means, but you also do say in that state, you can still have reflexes. You can still see it.

I would say that when I've done the exam and you see a reflex. So what you can't do is start arguing with a family or bargaining. And I've seen families get really upset at nurses. I think many people well meaning say like, no, it's a reflex, but then the families feel like you're bargaining against them or they're bargaining against you.

Whereas, you know, it's all about this terrible thing that happened, but I would say don't jump and say, Oh no, no, no, no, no, that was a reflex. But usually what I do is I look at it very intently and then I repeat the stimulus and I see if I can evoke it again, if it looks stereotypical. But I think I just really pay attention to it and show the family that I do take it serious.

And I think that usually goes a long way. I think that's super important, but I agree with Dr. Connell. I think setting the expectation that [00:24:00] can happen up front is also important. I'm really glad that you mentioned that technique of trying to elicit whatever it was again, and basically, you're aligning with the family, right?

You're saying, I believe you, let's try to get it to happen again, and you're walking alongside of them as opposed to budding kids during this project time in their life with them. I do want to touch on the notion of goals of care, because when we talk about goals of care, it's definitely before we do brain death testing.

And I just want to highlight this for our listeners, because after we have confirmation of brain death. There are no goals of care meetings because the person is dead. And so the language that we use when we're talking about brain death is completely different. So another example would be stopping organ supportive treatments as opposed to life sustaining treatments, like we usually say, because we're not [00:25:00] sustaining life.

And you can see how that would confuse family members. Another commonly used phrase is comfort focused treatment. We wouldn't say, when are we going to transition this patient with brain death to comfort focused treatments, because they're dead. We're not focusing on comfort. Any thoughts on other commonly used phrases or communication tips that you have, Dr.

Walser? I think it all starts very much up front, and I'm usually hesitant when I meet the family first to right away say I think they're brain dead, or, you know, ideally also no one in the ED should be called brain dead, I think you can say, you know, this is really concerning, you know, and there are often a lot of conversations early on the ED, whether there is a neurosurgical intervention that is It's futile, or that might be reasonable, and those decisions have to be made, but usually you shouldn't say they're brain dead or declare or say that to the family, but I think the initial conversation is just making sure they get to come, they get to be there, getting to know them, and then do say, and you know, I think a lot of it, you just with your voice, You look, you [00:26:00] know, you emphasize, but you do voice that it's a really severe injury that you worry that it's not survivable.

That you know often patients that become brain death and herniate become really hemodynamically unstable. They have a Cushing response, but they also become really hypotensive. Some of these patients have neurogenic cardiomyopathy like tachos picture and so yeah, they're often a multiple vasopressors to have arrhythmias.

The way you do voice the urgency and that you do hint, and I think usually then you let it sink and usually you don't declare right away. Again, you have to have an observation period. Look at the confounders. There's intubation meds, usually you kind of give the family time, but you know, you early on, make sure you identify them, you know, who they are, they know how bad it is, they have time to, you know, some time to process and come in.

And then I think usually I usually sit down and look at the imaging with them. I do agree that I think just being very careful in terms of terminology and then often using assent, you know, I think sometimes when we talk about procedure or DNR, you know, we kind of do ask, what do you think they would want?

And in cases like this, especially if someone is. You know, her needing really unstable. I do say, I do explain why [00:27:00] cardiopulmonary resuscitation would be futile in this case. And usually I don't make it a big, I think it's actually harder in the family if you make it a big kind of restaurant menu decision, but where you kind of just advise them and guide them.

And I would say mostly families don't hide that in that moment. They usually accept it and understand it. I agree, and I think it's almost like a normalizing. This is, this is what we do in this scenario. And instead of putting a burden on the family members, we hold that for them, and I agree, it creates less stress for them.

I wanted to ask one last question, which I'm sure will come up in practice for many of our listeners. The guidelines specify that organ support can be maintained for a limited amount of time to allow the family to spend some time with their loved ones. But they also provide, as you mentioned, Dr. Walser, specific provisions regarding recommendations that the hospital should have a policy for addressing situations where patient families have difficulty accepting the outcome of brain death testing or other extenuating circumstances where the [00:28:00] family does not want organ support.

removed after the patient has been declared brain dead. And I'm curious from your clinical practice if you have any tips for us, both Dr. O'Connell and Dr. Welster, about how to communicate with families who you find in this situation. Any tips that you have found helpful in these situations, which I appreciate are very difficult, and then how to effectively proceed forward.

I can comment on some of the most basic ways to handle situations like this, which is obviously the junior people on the team should not be engaging with the family, and it is helpful to have really a single point person who is the main point of contact so that the message that the family is getting is very consistent.

But beyond that, and basically knowing that this is going to take some time and trying to avoid rushing the family into believing what you're saying and going along with your plan, [00:29:00] again, trying to walk alongside them, establish some rapport. Sometimes it's just that they need a little bit more time, and very rarely it does end up becoming somewhat of a legal issue.

But maybe Dr. Walser can comment further on this. Yeah, I totally agree. I think it's all about real consistent communication, rapport early on, guiding people through this. And, you know, sometimes it's just a little time. I think it sometimes depends what the reasons behind it are. Sometimes they are in some ways cultural or religious.

And sometimes the culture is not necessarily that they don't believe in brain death or that they don't believe you, but sometimes there's this cultural sense of having to fight for your loved one, especially in front of your family or having to do everything that's possible. And if there is a ventilator that will keep them alive, you know, we interviewed a family of a very young patient that was very tragic and his family came back a year later and we actually interviewed a few families asking about their concept of brain death later on.

And there was another family that actually, you know, bought into [00:30:00] the concept, wanted to donate, was, you know, very kind of, you know, easy to communicate with in parentheses. But it was funny a year later when we interviewed the spouse. You know, there was a big picture of understanding of my loved one wouldn't want this, but the understanding of brain death was actually very poor.

And then this, we had this family that dug in, got legal support, didn't want to remove the ventilator, it was days and days. And they actually had a very, very sophisticated understanding of what brain death means. And you know, we actually asked them, you know, a year later, kind of, you know, did you just trust us?

Did you not? They're like, no, we, you know, we appreciated you, we trusted you, but we just had to do this for him. And so I think often when there's these cultural reasons. I think we still do a bad job at supporting that or getting at that, and you know, I still haven't found the perfect way. But I think Dr.

Connell's right, consistent messaging, really addressing any concerns, you know, whether it is that someone else recovered that was also very sick, or whether it is that sometimes it's really that they just need more time. Sometimes it is certain family members, sometimes seeing the exam again helps. And something I found that's very interesting, what happened to me multiple times now, is that when you put through the cold calorics to put the water in the ear, I've heard her [00:31:00] family say, please don't do that anymore.

Like, we believe it, but don't do that. And I would say another part of the whole family conversation is managing the team. And that I didn't appreciate as a junior faculty, I would say I'm appreciating it more now. You know, everyone suffers on your team. Everyone is conflicted. And when we have debriefs, you can see there's also different opinions towards it or concepts, and it's very hard for you, you know, you as the attending are responsible for making sure the distress of your trainees, the nurses on your team, you know, other people that hear about this case, that, you know, all of that is a drag.

And, you know, really address their concerns, too, and communicate with your team what the motions are. And there's a very fine balance of communicating with every one of those team members that are all extremely distressed and managing your other 15 very critically ill patients that also need your attention.

And, you know, ironically, the brain, that patient on your service, sometimes takes more time than all of your other patients that are also sick and, you know, warrant your attention. And so I think the tricky part is really juggling that, but also appreciating early on. And, you know, it sometimes happened to me that I was having all the conversation.

I thought I communicated, but then later I did not appreciate how distressed the nurses [00:32:00] were for at least three or four days. And I was kind of giving the updates, the big picture updates, but I think sometimes really making sure your team is behind you. And I think when you have a unit right front as a team, that also helps in supporting the family.

I'm so happy that you brought that up in terms of supporting the multidisciplinary team, interdisciplinary team. I, too, figured out somewhere along the line that documenting in the chart the exact wording that we're using, how we're supporting the family, just so that everyone, you know, the night nurses, the night shift respiratory therapists, everyone can see that, how we're going to align with this family.

Things to avoid with the family. And then the other thing that is also helpful because these situations are complicated with grief and maybe guilt and just so much sadness is involving spiritual care and involving palliative care. Because as you said, as the intensivists, we're oftentimes managing so many [00:33:00] other patients and we can't do it all for everyone.

Offloading some of that emotional care to other services is really helpful. Yeah, I'm really glad you said that. I think partnering with religious leaders, and we at Harvard, we have cultural case workers and cultural mediators, and actually one of our faculty, Dr. Lele, published a paper on kind of those experiences, and that stemmed directly from some very conflicting brain SDNC cases.

That's a very valuable point. All right, well, I want to thank Dr. Walser for joining our team today and sharing some of her expertise and helping us have this thoughtful discussion about the 2023 Pediatric and Adult Brain Death Criteria, the consensus guidelines, and their impact on our practices as intensivists and in palliative care.

We hope this journal review was helpful to place the new guidelines in context. From the Behind the Knife Surgical Palliative Care team, Dominate the Day!

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