Patients trached with end stage Alzheimers dementia and disease have lived this bone crushing and brutal reality. Where is the humanity? End stage Alzheimer's is called end stage Alzheimer's for a reason. It's end stage. And like everything end stage, it should be allowed to pass peacefully. Alzheimer's is no exception. These are end of life ethical issues at play here.
How terrible and sad for them.
I'm an ED doc, and this kind of thing really drags me down, ya' know? When are we, as physicians, going to stand up and say that this is inappropriate and flat out wrong and refuse to even consider traching and PEGging a demented pt with no quality of life? I know someone is going to respond and say that I don't have a right to make that judgement call about grandma, but in all actuality, we do. We not only have the right, but we have an obligation to stand up and refuse to abuse these poor old folks. It really saddens me when I have to go "all out" and code an elderly, demented pt. with contractures and bedsores, etc.... I think it's the wrong thing to do, but we do it bc we're afraid of getting sued. Oh well, I ramble...
ReplyDeleteYou're not rambling, Anonymous. I'm a nurse in a hospital and I feel the same way. I just can't stand it.
ReplyDeleteI'm a fresh third year student and I already can't stand it.
ReplyDeleteThe madness has to stop. Every single person on Medicare should fill out a set of advanced directives before they get another penny of Medicare money. They can request the trach/PEG/diapers route if they really want, but they should at least know what they're getting into.
ReplyDeleteAnd while you're euthanizing, why not stop birthin' all those babies that'll be stealin 2023 model cars in a few years? Or Liver and Kidney transplants for Death Row Prisoners? Viagra for Child Molestors? Coronary Artery Bypass for Bill Clinton? How many Ethiopians could be set for life with the Betadine bill for Ted Kennedy's Brain Surgery. Leave Grandma alone, maybe she wanted a Trach.
ReplyDeleteWhile you're ragging on costs, why don't you please write about why, why, why we don't have nationwide legislation that makes smokers pay for their health care costs? Dr. Leonard S. Miller of UC Berkeley estimated that 12% of 1993 health care costs from smoking. 12% of $2.1 trillion last year comes to $250 billion for 18 billion packs smoked or $13/pack. Even if this study is off by a factor of two it is $6.50/pack -- money which should go directly into the health car system and anti-smoking adverts. This is simply asking smokers to pay for their voluntarily incurred health care costs. Moreover, having them pay their full costs will result in fewer teens starting to smoke and more adults quit smoking.
ReplyDeleteAdvanced Directives...Yes! Living Wills...Yes! You are sooo right...it is v e r y sad...yes, stop the madness!
ReplyDeletefrank, i don't think we're talking about euthanasia, which is the active participation of ending a patient's life (though i don't disagree with it in the right circumstances). what we seem to be talking about is providing futile care.
ReplyDeleteas physicians, we are not obligated to provide futile care to anyone. it goes against the hippocratic oath (provided you actually believe it). with that said, the argument becomes what exactly is futile, and how do you know when you're there.
perhaps its like pornography... hard to describe, but you know it when you see it.
what would seem to be easy to see is that providing a tracheostomy for this patient (or similar patients) does nothing to achieve a good outcome. we're not making a difference in the patient's life... i.e. the tracheostomy isn't some sort of bridge to the rehab center where the patient can improve his/her lung function and eventually get off the trach/vent and get back to normalcy.
rather, this is just prolonging the inevitable... which is this patient dying in the hospital.
perhaps when we as a society say that we can't provide all the care all the time to everyone (because our financial resources are not limitless), and realize there are limits, then perhaps we can better address situations like this.
until then, there will unfortunately be a lot more patients like this.
I'm an NP caring for older people and younger people with end stage diseases in nursing homes, including some patients on hospice. I blame the PCPs for the situation you show here. We are very clear and present the futility and cruelty of treatments to families when necessary. Very few of our end stage patients have unnecessary procedures. You poor hospitalists have to deal with the results of incompetent primary care.
ReplyDeletei don't really think its incompetence (at least not on a grand scale), i think its fear of talking about end of life.
ReplyDeletei believe there's a survey that something like 80% of patients think their physician should bring up end of life issues... and roughly the same percentage of physicians think the patient should bring up end of life issues. clearly, that just leads to both sides not talking about it!
E,
ReplyDeleteI think that fear vs incompetence may be along the same spectrum. My mother had a very aggressive peripheral T-cell lymphoma with CNS mets. Her heme-onc kept wanting to flog her with chemo. As long as he held out hope, my mother (of the generation where you did what the doc said) continued to agree to ongoing chemo. I finally got fed up with the heme-onc doc looking thru rose colored glasses and we (my brother and I) called him and asked him to not offer anymore chemo and to suggest hospice. He agreed to do so AFTER our request, but had we not intervened, then I suspect my mother would have died a miserable death in the hospital after chemo.
Instead she had a month at home to spend with family and friends, plan her own funeral, pick out her gravesite and headstone and take care of her financial issues. When you are given hope and told that there may be a cure, you don't stop to think about the end. My experience with my mother and with other patients is that when hospice is initiated, then the reality of death is realized and the pt takes more active steps regarding closure or whatever you want to call it; but with ongoing aggressive tx and implication that the disease may be cured or controlled, the pt does not focus on closure.
CardioNP
I'm the NP who commented (3 comments before). I don't see the difference between being afraid to talk about end of life issues and incompetence. I do it almost daily with patients and families and it's just another skill you get good at with practice. You would never suggest a practitioner shouldn't do a necessary treatment because he was afraid. Physicians in hospital, nursing home, and office practice need to develop some courage and learn to talk openly and with care about the difference between torture and what is health care.
ReplyDeleteMy father is facing this future. He is currently stage 2 and until 2 weeks ago refused to fill out any form of advanced directive or medical power of attorney for fear that no one would respond to his medical needs if he were to become ill. Obviously he doesn't have any medical experience or knowledge. I, however, am a nurse, and know what is coming. It only took one night for him, while, hospitalized for chest pain, to make the decision that he would do anything to spend as much time out of the hospital environment as possible. He has made his plans, and decisions, and to be honest, I pray that something else takes him long before the disease progress, because it is a horrible way to die.
ReplyDeletei totally agree,my dad as end stage vascular dementia,and hsa had many hospilisations and has beemn prodded and poked about with he hates,everytime he screams an then goes into a state of withdrawal,his latest admission his consultant refused to do further tests on dad,saying it was cruel to put dad through anymore,which deep down i knew for myself,i shed alot of tears but knew it was for the best,still didnt make it easier,i look into my dads eyes an i know hes had enough of this disease that has taken over him,it has been the hardest days of my life discussing end of life issues with paalitive nurses,i think its kinder to let mother nature take its course,luckily my dad is still eating an drinking well, im just enjoying what time i have left with my dad,many familys and the person suffering with this cruel disease are different,and have to make their own choices on their loved ones care,my heart goes out to all familys and people suffering with this disease,xxxx
ReplyDeleteI must share something, if not to just get it off my chest before I explode. Right now I am dealing with my 92 y/o mom who was diagnosed with Alzheimer's 10 years ago and she has been in several nursing homes over past 8 years. She didn't want to live with my sis or myself, because she didn't want to leave her home town. I have watched mom lose every bit of dignity she ever had and is now reduced to 75 lb. soaking wet! SHE IS DYING NOW. Hospice is coming to the nursing home to keep her as pain free as possible. They medicate her with Ativan and some other strong medicine (Haldol??) so she is not agressive (slapping, hitting, etc. nursing staff) and the hospice is giving her morphine and methadone for pain. She has had no quality of life for years. When she was able to talk a little (years ago) she would go to the dining hall and had a few friends, but there is a SERIOUS STIGMA with the disease Alzheimer's, even in nursing homes. People think you are "crazy" and "have lost your mind" when all she wanted was a smile or a kind word. Anyway, I don't expect her to live much longer because she has stopped eating (forgot how to swallow). The doctor decided not to put in a feeding tube because she would just pull it out. Some of the meds are administered in cream form, otherwise she would just spit out the pills. It was decided to let her be as painfree as possible. Believe me, when you see your family member suffering like this, THE DECISION COMES EASY AND MORALITY ISSUES GO OUT THE WINDOW!! THE PEOPLE THAT ARE SO AGAINST IT MORALLY NEED TO RETHINK IT AGAIN! It is the right thing to do because she never chose to live this way in diapers and bedridden! I bent over to tell her yesterday that I loved her and that it was okay for her to go to heaven to meet everyone there waiting for her. I pray to God that she heard me. Sometimes I think this is all they are holding on for is knowing those of us left behind will be okay, even though we miss them. Thanks and I hope this helps someone. BTW, she didn't even know who I was yesterday and was scared of me. When I touched her, she cried. The hospice nurse said she isn't scared of you, it just hurts to be touched! SO INCREDIBLY SAD AND HEARTBREAKING!
ReplyDeleteOMG, anonymous...you have just discribed my mother. I had to go to the nursing home today to argue with a 20 year old nurse who thought my mom was sleeping too much.....SHE"S DYING!!!! Let her sleep!!!You are incredible for hanging on and going through this hell as I have with my mother. I don't know how much more she, or I, can take. Doctors need to speak up and help us out as much as possible when our family member gets to this point. While reading this, it was like the words had just come out of my mouth and we are two of MANY< MANY daughters and sons who are dealing with this. HELP US!! HELP our loved ones die with dignity and compassion. It is what THEY would want, we KNOW THIS. I feel like nothing more than a checkbook to the nursing home.....sick of it.
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