 Our next speaker this morning will be Dr. Tracy Kugler. Tracy has been a long-term colleague of mine at the University of Chicago. Tracy is an associate professor of pediatrics in the division of critical care, serves as the vice chair of the Medical Center's institutional review board and is an assistant director of the McLean Center. Today Tracy is going to speak to us on the topic of dead donors time to remove the ethical roadblocks and proceed with caution. Dr. Tracy Kugler. Hello, Mark. Thank you very much for inviting me. When I was asked to give this talk some of you may know because I've talked at ASBH and so forth. I strongly believe in organ donation and I strongly believe in donation after what has historically been cardiac death but more it's now been changed to donation after circulatory determination of death. We keep changing the name I think hoping it's going to go away. And so I'm really going to talk about that today and I need everyone to understand I'm not coming from the transplant side I'm really coming from the family donor side and I thought this was an odd place to have this talk but after the first two talks this morning I think you're gonna find that maybe it's not as such an odd place because I'm really looking at the donor families when all is said and done here. I have a long history with this which I had to reflect on recently for a lot of reasons I actually was lucky enough to be a medical student in Pittsburgh when they were debating doing this in Pittsburgh before the Kennedy Center publication in 1991. When I got to do my fellowship I was greeted at the door by my fellowship director who said since we can't convince you to go to the lab and you want to do ethics we've had three families request donation after cardiac death and we don't have a policy and we don't really know that we want to do it so here's your research project for fellowship and and so I've really have been at the groundbreaking level of this and I really think that we're looking at this the wrong way and hopefully in ten minutes I can at least give you some ideas on that. Let me explain what donation after car after circulatory death is this was in the New York Times in 2006 so we've been debating this a long time 15 year old girl is in a hospital with brain injuries from a car accident the trauma and bleeding are extensive she's got extensive head injuries she's never going to wake up she's going to be in a persistent vegetative state her family request to take her off the ventilator and they request that she be an organ donor she's not brain dead which typically is what we expect for organ donation so although her brain has completely shut down she continues to breathe occasionally so they have to go through donation after circulatory determination of death and she's able to donate liver and kidneys donation after circulatory death the it's a decision in which the patient has decided or the family has decided to withdraw life-sustaining therapy and in the adult world it may actually be the patient because this could occasionally occur with COPD ALS or high spinal cord injuries the physician and the organ procurement agency which in Illinois is gift of hope determine if the patient is a candidate on medical grounds and then there's a discussion about possible donation with a family including methods for donation the organ recovery method is that the patient is taken to the operating room life support is withdrawn there by the patient's physician and comfort medications are given so that there is a palliative death death is declared after five minutes of pulselessness and the definition is acystole v fib or v-tac in my land of pediatrics it's 99.9% of the time acystole which makes me a little bit more comfortable the incision is made the organs are perfused with cold preservative recovered and if death does not occur within 60 minutes the patient has to be removed from the operating room and continue comfort measures in some other location either back in the ICU or some hospitals would take them on to a palliative care room so the big ethical dilemma is that heart and respiration have ceased the big ethical dilemmas are they dead and everybody's arguing over this five minute piece and this five minute piece is lots of things but I think this five minute piece is over a dead donor role and I really feel like at this point this is ethics just continuing to talk about the same issue the IOM has discussed this three times and has decided that cardio respiratory death is death they actually in the last one started to question whether brain death is death and so I feel like we need to really get beyond this and actually look at the real issues and the real issue is the yuck factor and why is the rest of this and what is the yuck factor and I tell and I can tell you from personal experience the yuck factor exists I wish I could make it go away having done several of these cases I can't I can't make it go away from me and I know I can't make it go away from my colleagues the death is occurring differently than what any physician is expecting it to be we're doing it in the operating room no one wants death in the operating room surgeons don't like death in the operating room anesthesiologists don't like death in the operating room oh our nurses go into our nursing so they don't have to deal with death it's a strange place to die and to do it intentionally the patient is surrounded by the hospital staff and by the OPO staff in addition to the family if you bring the family into the operating room and that's a very unusual way to deal with withdrawal of life support it's usually one nurse maybe the physician but many times the physician leaves the room and it's the family we have all the monitors on and I promise you everybody in that room is watching the clock and that is really all we're doing is watching the clock and watching the monitors and that is a very unusual way to be dealing with a dying patient and a die in a family of a dying patient is for everybody to be watching that clock but we're all watching that clock and giving appropriate pain medications does feel different I've had more than one colleague say every time I gave a dose of medication I wondered if it wasn't going to cut lead to the last breath and am I really killing that patient where when we're doing it in the ICU they all tell me that we do the same thing but we feel different about it we absolutely feel different about it because we're all watching that clock and I have at least one colleague that finally gave the medication she thought needed to be given to a patient after the clock time had expired because she was afraid that someone would perceive by her changing the medication she was giving because the medicines she was giving were not alleviating the pain someone in the room would consider it that she was doing it to kill the patient and not to provide palliative care but after the time clock ended and the patient was no longer a candidate she switched her pain medication and that absolutely cannot happen moving forward and that's a big problem because we actually get so worried people are worried we're gonna give too much pain medication I'm more worried we're not giving enough pain medication for the patients that actually do have neurological function and then if you do bring the family into the operating room you have to whisk the family away so that the transplant team can whisk in to take the organs and that seems really unusual too to have a family have to leave immediately so how do we get through this first of all do families care and having done this several times now some do a lot and some really don't luckily most families don't experience lots of death in an intensive care unit and especially in pediatrics I unfortunately have had the rare family that's had to experience it twice but losing one child in a family is highly unusual and think as a child is highly unusual so this is the first time they've been through this and whatever we say they're gonna pretty much go with some families actually do not want to be in the room when we withdraw life support so this does not seem so far into them and actually it relieves them for other families I need to get them into the OR and organ donation is very important for some families I've had multiple families request and I've had multiple families come back and say it's a great thing I have also had some families state both locally and at national meetings that things went really bad and that's not okay either we need to figure out how to do that and they want to trust the team it's the most important thing and having the wishes respected so how to family what do they really care about they do want patient dignity so we have to make sure that we're doing that throughout the dying process they want to be prepared for what's going on so we actually have to tell them what to do what's going to happen how it's going to happen who's going to be there because there's gonna be lots of faces that they have not seen before we've got to stop and ask them what they want and what's important prior to withdrawal and at the time of withdrawal sometimes it's having their religious beads with them sometimes it's having in the land of pediatrics it's making sure the child has their blanket or their stuffed animal or that we still do hand prints because we do hand prints sometimes it's having their minister there sometimes it's having their little sister come in whatever is important you've got to make sure that happens it's making sure the grandparents get in from out of state whatever's important you have to make sure that happens and respect those wishes and they also have to feel like someone's in charge and knows what's going on and this is the piece that I think we're missing so the barriers the problem is is that there's lots of players when we do a DCD and they all have very different levels of knowledge and they all have very different goals so you have an ICU team who maybe has done this before but probably hasn't done this before and if we do it at night which it usually happens at night because interestingly most families want to withdraw at night and most of the time that's the only time you get an OR available to do something like this and if you do it at night unfortunately many institutions still believe that residents are capable of running the hospital at night and so now you have a resident doing this who is on their ICU rotation for the month and may or may not have a lot of guidance and I really think this is when the attendings have to stay there and they have to stay dedicated and they have to continue to work with this and so you've got an ICU team going into the OR we don't ever do that so we don't really know our way around the OR the ventilator in the OR looks very different from our own ventilator so ideally we probably should bring our own ventilators into the OR but that means you've got to get respiratory therapy to do that then you've got OR nurses and as I said OR nurses don't do death and dying and then you have a transplant team that is likely not to be from your institution even if you're a transplant institution so you've got surgeons coming in from St. Elsewhere that you've never met before that may be an attending again or maybe a fellow and then you've got an OPO and I will tell you OPO teams change a lot because it is really sort of a depressing job to be dealing with dead patients or dying patients every single day of your life so they get lots of young people interested in going in but fundamentally most of them burn out in three to five years and so you've got this whole team of people that have never met each other before and don't know anything about each other and so how do you deal with that and so then we don't talk to each other and then at the whole thing just breaks down and everybody feels like they're really more in isolation so my solutions to this I have really encouraged hospitals to look at using palliative care teams to work with this and get palliative team palliative care physicians to do this and having talked to several palliative care physicians today I understand you have all become overworked and underpaid and you're working too many hours and this is not exactly going to improve your lifestyle but I think it makes it a much smaller group that really knows how to do this and really maybe can figure out how to work the system I also wish that transplant surgeons would decide that even for the liver that rather than flying in from wherever that you try to use local teams and then perhaps gift of hope could set up local teams in each city or each location and say this group of people is always going to come out to your institution and let's have some conversation about how this can be optimized so that there's some conversation there and the other thing is really having dedicated organ donation teams that include social work and chaplaincy and physicians and nurses that are really invested in this process I do think that families need the choice for organ donation and I hear too many ICU physicians go this family would never agree to donation I've got my donation story that makes me ask every family as a 12 year old came in as a John Doe he sat in our ICU for three days is about a 12 year old John Doe he went to brain death he was a he was a gunshot wound mom had to come in finally after being on the news mom came in had to identify him had to be told he was dead and had to decide about organ donation and she agreed to donate they were homeless they had been in Chicago three weeks and he was walking to school if that mother can donate every family has to be asked and we've got to devote the resources because if we don't devote the resources families are gonna have bad experiences and that's not okay for any death and good life good end-of-life management will lead to organ donation rights going up in my opinion questions questions