Facing Death (full documentary) | FRONTLINE

foreign [Music] an intimate Journey to the edge of Life nobody wants to die and nobody wants to die badly Into the Heart of modern medicine it is almost always something else that we can do to put off the inevitable where patients families and doctors face the hardest decisions if you're tired and you don't want us to do this anymore that's okay with me the moments of Hope people surprise us all the time patients that we didn't think could breathe do breathe patients with severe illness will go with you to the edge the will to fight [Music] why give up what's that gonna do and the courage to let go I think doing nothing is a very important consideration it really depends on what you want tonight on front line facing death in the Intensive Care Unit at Mount Sinai Hospital in New York City a family Gathers gundalin and Lara morillo has been kept alive on a ventilator for the last five days she's not doing well she's dying very difficult we know with every major organ failing from end-stage liver disease her family is now faced with taking her off-life support we have a decision to make one of the decisions is whether we should take the tube from the mouth and take it out does he have thoughts about that say yes okay so let me prepare you for what may happen the ICU is at the Apex of life and death we give a little bit of dose of the sedative to make sure she feels no pain we have a tremendous amount of technology that prolong life But ultimately we can't overcome the patient's illness in most cases they have cancer they have kidney disease they have end-stage liver disease they have these diseases that are life shortening after we remove the tube now if you look at the history of critical care the idea of an intensive care unit was for you to come there with a life-threatening illness and respond to the treatment and get better unfortunately what's happened is that Americans are now coming to icus to die okay [Music] I'm gonna take it out okay more Americans die in hospitals than anywhere else often after prolonged illness and many medical interventions [Music] but modern medicine is capable of doing is almost what 20 years ago was considered science fiction essentially you can support pretty much every body system for years because you can keep their lungs breathing and keep their heart beating keep their blood pressure up and keep their blood flowing it's that suspended animation State goes on forever so the decisions the end of life have become much more complicated for everyone involved as healthcare costs continue to escalate there is growing concern over the billions of dollars that Americans now spend each year on end-of-life care there's a tremendous pressure now to reduce care to numbers as though there's an algorithm for every decision when you look at you know Medicare data on expenditures at end of life and what is very glibly termed waste [Music] 30 percent of All Care is waste that's the new mantra it's very hard to know what that means and it's very hard to bring that out of Washington and into a hospital and at the bedside with a single individual facing death [Music] I'm going to put your head down Robert bernardini is 47 years old he had a massive stroke two years ago and has been living in a nursing home his cost of care is covered by Medicaid he was here two months ago here also with pneumonia he got better we sent him back to the nursing home and came back in Tuesday and since then he's been on the machine when Robert came into the hospital with pneumonia he had a cardiac arrest and was resuscitated he has now been on a ventilator in the Intensive Care Unit for over a week the first two days he was listening to me because he would I would tell him Bobby if you hear me touch my hands and he would but now I don't know what it is that it's not happening like that anymore nearly 95 percent of our patients cannot communicate it's because of either their underlying illness or because of the heavy sedation we're providing so what happens is is that most of the care and interventions are discussed with the health care decision maker who may be a family member or a health care proxy in a perfect world the patient designates a healthcare proxy and has a discussion about what their preferences would be at the end of life but many of the patients who end up in the Intensive Care Unit those discussions have never happened the critical care doctors and this causes a tremendous amount of Burden for everybody because they now have to make life or death's decisions for somebody else so we know that he had his underlying problems right so he has uh his emphysema and we know he's had a stroke and uh and his underlying HIV uh as well from the standpoint of his brain uh it's unclear whether he's had long-term damage from the cardiac arrest but it does appear that uh he's waking up bigger problem I think right now is his lungs if we're unable to safely get him off the artificial respirator removes it too safely then the next step is what we call a tracheotomy right but there is a tremendous amount of pain and suffering that can go along with that as well it will certainly prolong his life the question is will it improve it I don't know what to do about this should I just let them keep living in this condition I don't know I don't want him to suffer anymore I mean I'm suffering and I know he is awesome now I can't handle this no more but I just hope that I make the right choice I don't know I really don't know these are decisions about whether people are going to be alive or not alive and if they are alive if they're going to be living with dependence on life supports or not or in a quality of life that may or may not be acceptable to them the risk is that somebody ends up in a position that they absolutely do not want to be in and they are very vulnerable and voiceless and cannot extricate themselves from that position so she is very very wasted um you know very poor nutritional status she's had multiple amputations of her digits from her underlying disease Diana Reed is 31 years old and has Scleroderma a progressive disease that causes the skin to tighten and major organs to shut down you've got a patient who's in shock when she first came to the ICU two weeks ago she was in respiratory distress and had to be intubated although Diana told doctors that she did not want to be permanently dependent on machines her family is not ready to take her off the ventilator now let's address the family situation because we did meet with them yesterday and they're coming back in today and we have some difficult issues that we've got to address with them what we're doing is giving her every form of support that we can for all of her organs she's getting maximum support from the respirator she's getting medication to keep her blood pressure up her kidneys really haven't been working there are clinical situations where the odds are so overwhelming that someone can survive the hospitalization in a condition that they would find acceptable then using this technology to support the physiology of the patient doesn't make sense does it feel and yet for almost everybody involved it feels much more difficult to stop something that's already been started right now I want to keep her the wishes on the respirator you want her on the respirator okay [Music] [Music] [Music] Martha lauraville is 86 years old and has dementia she has been intubated for two weeks and now her daughters nadesh and nurse and surely a physician have to decide whether to remove her from the ventilator foreign [Music] thank you for she loves life she's the one that always say oh I call 9-1-1 right away and even though she was not acknowledging anyone we didn't know she was she knows the surrounding she lift up those two fingers and shot of course we applaud we were so happy about it I myself would not want to put Mom through a trick and I'm not sure at this point what benefit is that will that prolong on the life that she's right now for one month or two months and although it is something that will be missed greatly but to me if it gets to that it's something I would accept because of compassion for her my sister in the other hand have a different opinion I don't want to be the one to say Deanna and to be responsible for the before time I want to make sure that the help was provided and she gets it I would not stop her from breathing I would help I would maintain her until the last minute I mean who Am Who Am I who are you we cannot decide I want to see one day at a time and take it there are four of us we will take a vote including the grandchildren and see what comes out to and whatever comes out that's what we're gonna abide bye how are you nice to see you again the lauraville family is meeting with doctors to discuss taking their mother off the respirator we've come to a crossroad as to with regards to a decision people cannot stay on a ventilator with a tube for a long time giving the possibility of infections and other problems that may arise if it's successful we remove the tube it's just able to breathe on her home the question is if we remove the tube and she does not breathe on her own what should we do first of all I want to know if she need to be reactivated again can she be placed the same way back uh O'Reilly and if so how long or does she have to have a trick on actual surgical entry okay so I think it's important to realize that what got her intubated is that she aspirated not on food likely but just her own secretions and that's a part of the natural history of dementia so that will happen again so if we take the tube out it's highly likely that at some point it's going to have to go back in if we do that we're going to be exactly where we are right now again I would go for the trick and that's what I think what it would have wanted any respected and and the quality the quality of life you know do you mean to be seen because we know that you know that Alzheimer's is progressing you know we don't know it's going to be better tomorrow or should it's not improving but you know we don't know like he's actually going to survive are you betting on how many days how many months how many weeks you know we don't know you never really want to impose your own personal morals or beliefs on a family but I mean the truth is and I thought that probably the most Humane thing to do would be to take the tube out and to see if she could breathe and if she couldn't then to just make sure she was comfortable but that's my own personal bias the family voted two to one that if the extubation failed they would do the tracheotomy exhale exhale she's breathing restoration 18 so it's saying heart rate 104 opposite generation is 95 to 96 percent good that's the question is good we'd like you to breathe okay people surprise us all the time patients that we didn't think could breathe do breathe and people we didn't think would get off life support do get off life support so every time it's scary because you're afraid that maybe you're guiding someone to stop treatment when maybe that's premature so it's very very fine line yeah for every disease there's always a tail end of the curve there's a group of people who defy expectations we don't know what will happen for any individual we can look at probabilities and chances but the way progress is made the way advances occur requires going to the very edge pushing very hard many times in silence we fail but that is what often drives medicine forward and leads to Discovery here in the bone marrow transplant unit a team of oncologists treats people with blood cancer who a generation ago would have died but now a bone marrow transplant gives them a chance of survival we are an extraordinarily aggressive group of Physicians we couldn't do what we do if we weren't very aggressive we can endure some level of suffering among our patients because we believe that while we do make them suffer that there is a greater good at the end of it that they will come out the other side and we've seen it enough times that we hold it as a belief when you transfuse her today let's get a post-transfusion CBC a bone marrow transplant is one of the most drastic Therapies in oncology and it's expensive the cost of a transplant alarm can be close to two hundred fifty thousand dollars Plantation is viewed as the final strategy that has the potential to cure diseases that are otherwise incurable we're using super lethal doses of radiation we're talking about radiation that patients were exposed to nearly with the A-bomb and they get sick enough so that they can die from infection or bleeding or other organ toxicities the mortality from transplant can be 25 30 percent from the treatment on the other hand we're dealing with diseases which will otherwise be fatal so that's a struggle we have all the time you know trying to weigh the potential risk of death from the procedure and the risk of death from the disease good morning when Albert Alberti 53 was first diagnosed two years ago with MDS a type of leukemia he was given only months to live married with three young children he knew a bone marrow transplant was his only hope for a cure it's all but how is the skin doing how is the rush doing uh not good is it more itchy compared with last week yes yeah the skin is very very rare Albert had one transplant but it failed and then he had another both were covered by his insurance but with each one he's had terrible complications including pneumonia and a stroke when the first transplant didn't work we went to the second one and I still stayed positive but then when I had the stroke that that sort of broke me and um I always felt myself as a pretty tough guy but my emotions lately have been [Applause] um so it's it's it's it's it's it wears that to these diseases um I had my appendix out once and it was a week I was back to normal broke my arm six weeks back to normal it's uh 11 months and they have no answers we are just still debating about what to give you we don't want to harm you we want to help you with right we're still looking for donors for you if I have another uh stem cell transplant I would have to get a stronger heavier right because the chemo treatment with the stronger you are the better it will be for you so okay hopefully we find another donor and I could go through another transplant and this one will be successful and I could get back to a normal life that's uh that's my goal he's got to take every step possible you know it's uh it's tough but you know why give up what's that gonna do some patients want to know what are my chances of surviving but even when the numbers are low they still go for it because the option of living is worth it it's very difficult for me to say to a patient I don't think you have any treatment opportunity I never said that to any patient never I think I I can humanly say that to a patient I always say you know what we can do this or the other even if it's in a positive way but I offer I always say there is something to do [Music] you go every Monday let's get lento's pizza lentils doesn't exist Cantina Cantina for nearly nine months John Maloney has been in the hospital with one complication after another sandwich but now there is a chance to go home you get the fresh ham this has been crazy he has been hospitalized since January October now I'm watching the seasons go I open my pool I closed my pool he never even saw it he hasn't stopped fighting in two years now it's been two years and he's just keep going keep going I'm going to do this and we're going to have time and we're going to do things and I'm gonna get better and that's still his Mantra that's still what he's saying John Maloney a corrections officer was 55 when he was first diagnosed with multiple myeloma he's tried every available treatment including two bone marrow transplants but his myeloma keeps coming back you're going to lift up as high as you can it's hard to watch you know John was six foot three 250 pounds he's like 150 pounds now you know it's uh very hard to see him like this sometimes when I come into the hospital I'm almost gasping you know like wow and I told John I said no more cancer treatment no more chemo I can't see you be any more debilitated but then you talk and you say okay let's try something mild because doing nothing it's scary to do nothing because what if I don't want him to die you know so you feel like you want to do something I'm ready can you believe it I can get out of here right well apparently you did the stairs I did pretty good too I was kind of although doctors believe they can no longer control his myeloma John doesn't want to stop treatment so they've agreed to send him home on a mild chemotherapy I still think you're not strong enough to get big time no right chemo in the hospital and you it's just let's face it you've been here for so long it's time to leave for a little while it's very time to live but I think we've accomplished the goal that we've tried to accomplish we're strong enough to go home to keep things stable and I think you know the goal was to go home so yeah yeah okay all right great sounds good okay have a wonderful weekend at home see you Monday okay okay all right John wow back home for a while it's back home for good good some Physicians can keep giving treatment and some find it unacceptable and that is I think where the Art and Science of medicine makes the lines are blurred and they're also different for different Physicians sometimes there are patients for whom I think about them and I wish we'd stopped earlier because I think they suffered unnecessarily but in the Moment In the Heat of that moment maybe I didn't realize it at that time sometimes there are forces outside of the patient and myself that are the patient's family other Physicians and so sorting that out can be very very tricky in those moments and each situation is slightly different the significant hired and he wanted to um if any to be a DNR he still wanted everything done but a patient's girlfriend has just told doctors that he wants to sign a do not resuscitate order a DNR an NIV needs to be changed every three days Norman smelly has been in the hospital for two months suffering from life-threatening complications of his transplant tell me what's happening you having pain in your belly you're scared what are you scared of yeah I don't want to do it if you're scared Norm we don't have to do it there's nothing wrong with the catheter it's working it's not although he's always told Dr Rossman that he wants everything done to stay alive he's now starting to refuse treatments and she needs to know if he's changed his mind let me ask you something Rita said that you've been thinking a little bit about if you ever needed a vent what you would do or what you would want us to do and have you thought about that more and do you want to tell me something about that hmm if something should happen and you would have trouble breathing do you want to be put on a respirator to help you breathe you do is that a yes okay all right that's what you always did Express to me but I want to make sure that hasn't changed listen I want to say something that you should think about today but you don't have to say anything about it now I just want to say it to you okay if you're tired and you don't want us to do this anymore that's okay with me but you gotta let me know I don't want to put you through procedures that you don't want to go through but I don't want to not do the things that are right in terms of trying to help you get better that's what I told him I told him if he doesn't want to do it anymore Norman's girlfriend Jima has been with him 24 hours a day for the past two months I'm trying to read from his face but she is not his health care proxy I want to respect what he wants but he wants to sign Diana he didn't say that just now we asked him so he said it to me I believe you that he said it to you I think and then is what I think I think is kind of going I think he's everything is yes no yes no I asked who is the healthcare proxy Phyllis if you can stop breathing do you want us to put you on a vent yes but I think one minute this way one minute I know him what he won I'm not the official healthcare proxy but uh let me tell you I don't want to see him suffering you know people poking him that's it nowadays he doesn't want to be bothered you know let me go let me go it's not one time he's okay so you know his diet it's the next morning and overnight Norman got worse his liver began to fail I'm fine Phyllis how are you so doctors called in his sister Phyllis who is his health care proxy a month ago he discussed the healthcare proxy to me I want everything that's it he said I want everything he's a young man and he won everything I said okay Norman those your wishes I will do it he knows his illness he knows so if he says he wants everything to stay alive that's what I'm going to do although Jima still believes he wants to stop treatment Dr Rossman and Norman's sister decided to send him to the Intensive Care Unit to see if he could be stabilized sometimes it's not knucker what's reversible what isn't will they rally From This Moment from this infection you can count all the things that are moving against them but that doesn't necessarily mean that the prognosis is dismal sometimes those things can still it all it only takes a little bit sometimes to to put them over the edge into back into the living but in those wee hours of the night when you think about the patients and am I doing the right thing and so on I think there are a lot of question marks that come up and sometimes you fight to The Bitter End and you still lose [Music] the degree of uncertainty you have to deal with now is the doctor it's hard to describe how much greater it is than it ever was before because there's so much Innovation and because of how rapidly it evolves there's almost always something else that we can do to put off the inevitable another course of chemotherapy a little bit more radiation what if we got one more CAT scan what if we explored this person's belly one more time there's always a nagging concern in the back of your mind have I really left no stone unturned in the context of bone marrow transplant it's even more uncertain because this is a field of medicine that has advanced so much where new treatments a new interventions can change outcome so that now many many lives are saved but you cannot escape the reality that too often that success is not the case and you risk amplifying suffering hi what happened [Music] around seven o'clock last night I was feeling very uh unstable uh my balance was off I put my children to bed early three weeks after his Clinic visit Albert Alberti was back in the hospital and I just fell off the toilet bowl slow motion I couldn't stop myself are you having any headache today no any change in your vision no can we try and stand up Mr Alberti was in a really horrible position because not only had the first transplant fail but his underlying disease had recurred don't worry I'm holding on to you small steps and he was so debilitated that the reality of him being strong enough to withstand the rigors of another transplant was minuscule all right so this is what we'll do I'll go look at the CAT scan and then we'll speak with a neurologist one thing that makes our patients different from other patient populations is by the time that we transplant them first time second time they've been through so much that at that point stopping therapy is not even within the mindset of the majority of our patients stopping treatment almost means that we acknowledge that death is near [Music] foreign home for only a week he was brought back in on an emergency admission definitely are a lot better than yesterday I didn't even know what day it was today when I woke up you know Monday I was in good shape we started out the door and I'm telling you it's like somebody shot me that was Friday yeah I kind of wish we didn't do that second stem cell transplant but he doesn't he said I had to take the chance I had to you know so we have different feelings on that you know I think everything went downhill from that the chemo that he had prior to the stem cell transplant even though he lived he survived he hasn't walked since I do think that the disease is getting worse so we need to think about where to go from here you know knowing that you've had many many therapies for your myeloma including two transplants and now when we make a decision we need to think very carefully because many therapies that we give you may affect your quality of life or may even shorten your life so things to think about would be you know to go home um with a lot of support with home hospice would be a possibility or not or if John wants to try further therapy then we can try to tweak this regimen that you've received but I'm not sure it will really help but if you're saying to do therapy and it's not going to help so why not just do nothing what is still be stay the same I think doing nothing is a very important consideration it really depends on what you want all right John I'm going to be back to check on you a little bit later okay Debbie I'll be back with you okay okay we can't keep bombing your bodies on you can't that's the bottom line okay I'd rather be like that then dead [Music] nobody wants to die nobody wants to die and at the same time nobody wants to die badly that is my job my job is to try to prevent people from dying if there's a possible way to do it that will preserve a quality of life that's acceptable to them but if they can't go on to try to make the death a good death were you here during the night okay good morning Norman we're gonna just listen to your chest and do a few other things on the exam and we'll try very hard not to hurt in any way can you just open your eyes up a little bit for me and look all the way up it's been two days since Norman smelly was brought to the ICU from the bone marrow transplant unit and he has continued to get worse all right don't push too hard because he's got pain in his thigh so Dr Nelson wants to meet with Norman's family and Dr Rossman to discuss his prognosis he has a lot of medical problems as you know and doesn't have terrific counts he got grade four graphic Associates of the bowel which I have yet to see somebody recover from and live through he also has CMV so he has a lot a lot of problems you know I had many conversations with Norman myself about his prognosis and what would happen and what he wanted but you can have a lot of conversations about these things but I think when the moments come I don't think that anybody can be completely prepared for what it's really all about Savannah so you know he had the biopsy the other night but looks like that is the the gbhd but I have a question and I would like a straight answer is my brother dying I need I need a straight hands what do you think Phyllis what do you think wait I mean I I think we can say what we think but what is what is your gut feeling about it my gut feeling is that this there is not going to be a positive outcome here okay there's I I don't see Norman walking out of this Hospital I think you're right Phyllis I think he's dying and we have trouble picturing him leaving the hospital also I think he has too many problems based on what Dr Osman is telling me and what we've observed in the ICU and they're all playing against each other in a very bad way deli meat he doesn't want anything that's why I remember when I asked him yeah yeah he doesn't want anything for uh well since he was upstairs unfortunately for me then when I come he never says any of those things to me I just don't want him to die in pain he's not going to be in pain he is not going to be in pain the uncertainty is the most disturbing part of the decision making and the availability of the therapies has created this fiction that we can orchestrate this one way or the other when the truth of it is that for all of this magnificent technology the underlying illness and the medical condition of the patient are Far and Away the most important factors in determining the outcome but it feels like when you have the technology available that your decisions to use or not use it are like um the decisions to allow life or not allow life and that's not a position that any of us wants to be in after meeting with doctors in the ICU Norman's family decided to sign a DNR and focus exclusively on Comfort Care when there's no chance that things are going to get better then I think the only hope you can offer is for that good death whatever that is and for allowing some comfort and some acceptance of the situation but you know I don't know I think that the concept of a good death probably matters more to those who are around the one who is dying because they hold that memory in their mind but I don't know that the person who's going through it I who knows he won't say that he's going to die from this you know as crazy as that sounds he still won't say it I think he thinks if he says that he's giving in he's giving in to the cancer he's giving in and he's saying there's a possibility I might die and John won't say that I don't know maybe I'm terrified now I think this week has changed me because I think I really believe that he was going to get stronger and I really didn't think this was going to happen so I think now I'm I'm scared hey girl how are you still bleeding a lot I don't know I was I'll still have it it's been one week since John stopped chemotherapy and now he's bleeding internally earlier in the day doctors needed to know if he wanted life-sustaining measures to keep him alive or if he wanted to sign a do not resuscitate order and then we'll go on there's a choice and we'll see what happens so what John you're not understanding honey not understanding you're not understanding what he's saying to you he's saying if you ever go into distress again you have a choice to say yes do everything you can I want to live on life support or no I've had enough is telling you that it's not going to help it's not going to make you better at that point if he thought it would he would do it but at that point it's just sustaining your life and that's the choice you have to make that's right right okay the other thing is to get the blood under control that's what Dr Osmond was just talking to you okay but I don't know that's why I raise it because I'm not sure that you're going to be able to get back home again I think we could do everything to get you back home but then what might happen is the bleeding might start again because we're not really doing anything to definitively fix that bleeding because we really just can't anymore right we'll talk about things yeah you need to just a lot to take in today there's a lot of stuff that have been said in my bed not prepared to hear that's okay that's okay take it take it to your Heroes good I told you I know ain't going anywhere do you have like flexibility to take a little bit of time I don't know I'd have to do you need me to call your boss like like how much time a couple of weeks and you're saying that's when it's at the end yeah so that you have your time with him and he has time with you and you both can be at home all right guys I know [Music] John never did sign a DNR but he did agree to go to hospice one day later he would die foreign [Music] two days after his family decided to stop aggressive treatment Norman smelly would die from complications of his transplant I'm not sure that the transplant prolonged his life but I'm not sure that he would have lived much longer without it he died a much more difficult death after the transplant than he would have died had he not chosen that and I'm not sure that we added to his quality of life at all of course there is some guilt we did that to him now what and so that's that's a that's yeah I didn't want that for him what's my name what's my name my name they calling beneathia no me a few days after being readmitted to the hospital Albert alberty had a massive stroke one week later he would die patients with severe illness will go with you to the edge even for that small chance that they'll beat the odds and they'll be the one who will emerge [Music] often they're not but sometimes they are and we should be very careful that we don't label as futile or meaningless some treatment or some attempt to push the envelope because otherwise we will stand in place only one day after Martha lauraville surprised Everyone by being able to breathe on her own she had to have a tracheotomy she has now been living on a ventilator for over a year at any given time a hundred thousand people are chronically critically ill on ventilators all over the country it's estimated that the cost of caring for these people is in the 20 to 25 billion dollar range annually [Music] and these are the broken survivors of intensive care and the better intensive care gets the more of these broken survivors we have what we've done in Medicine by offering more and more and being more and more aggressive is to create this sort of culture of expectation that when you come you're coming to get something more it's really in this country maybe alone in the world that we allow our doctors to continue to practice in that way and we allow our patients to continue to have that expectation there's no question that the technology has saved in a meaningful way hundreds of thousands if not millions of lives but with those advances and and all that progress comes an ultimate trade-off [Music] the toll is sometimes devastating on the patient themselves on their family their loved ones and on the Health Care system Frontline is made possible by contributions to your PBS station from viewers like you thank you and by the Corporation for Public Broadcasting major funding is provided by the John D and Catherine T MacArthur Foundation committed to building a more just verdant and peaceful world and by Riva and David Logan committed to investigative journalism as the guardian of the public interest additional funding is provided by the park Foundation committed to raising public awareness and by the front line journalism fund with a grant from Scott Nathan and Laura de bonus [Music] for more on this and other Frontline programs visit pbs.org [Music] front lines facing death is available on DVD to order visit shop pbs.org or call 1-800 play PBS [Music]

Channel: FRONTLINE PBS | Official

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Id: UDvR5FBqI_s

Length: 53min 23sec (3203 seconds)

Published: Tue May 02 2023