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Medical Forum / Diseases and Disorders / Cancer / September 2006Doctors want to stop treatment, do we have the RIGHTS to say no?
We are really at a loss of words right now, and the amount of stress and anger we are all feeling cannot be described. This is really urgent, and any advice is GREATLY appreciated right now! I am desperately hoping to get help or advice from CCS or anyone else with experience with this situation. Here is a really quick recap of the past 3 months of our situation: My Dad was diagnosed with Leukemia (CLL) about 5 years ago. This summer he had a bone marrow transplant. Things were looking good for the first 2 months, but now (we just past the 3 month period) things are terribly bad. A disease related to the fallout of having a bone marrow transplant called 'Graft Vs. Host Disease' is very common, and my Dad has the most severe case of it in his gut (grade 4 GVHD). He's been in ICU (intensive care unit) for the past 3 weeks or so, and today the doctors pulled us in and told us the drugs they're giving him aren't working. He's not getting "worse", but at the same time he's not getting better. All his vitals are stable (heart rate, blood pressure, etc), except he he's had a fever for about 2 weeks. He's interbated (on life support/breathing machine) and can't speak with us. He's also sedated (mildly). Today the doctors called us in and explained to us what they've had on their minds. They pretty much said one of the things they might consider is to just stop all the drugs, antibiotics, etc. on him, and pump him full of Morphine... then let "nature take its course". When the doctors left, we asked the Nurse a few questions on if the doctors could do that, but she just danced around the issue and never gave a solid answer. I need to also state that, although he is mildly sedated, he still opens his eyes when we call his name. When I say "Hey Dad, it's David" -- he nods and smiles. We ask him if he's in pain, he nods or shakes his head. We ask him to squeeze our hands, he squeezes our hands. We ask him to move his feet, he is able to wiggle his feet, etc. We really want to know if we as his family have any rights to prevent this? Can we tell them "No. He told us before coming in that he wanted to fight to his very, VERY, last breath"? Or is it ultimately the doctors decision to let him go like this? Our whole family is just stressed to the max now, we've been going strong for the past 3 months and now the doctors come and tell us this... we just don't know what to say. > We are really at a loss of words right now, and the amount of stress > and anger we are all [quoted text clipped - 61 lines] > months and now the doctors come and tell us this... we just don't know > what to say. The physicians have an ethical imperative to do what is best for the patient. This sometimes runs counter to what families want or "think" they want. Nobody can for a doc to give treatment, especially nasty treatment with side-effects, if the doc thinks it will do more harm than good. I think you should be happy your dad's docs seem to know when it's in his best interests to stop. > We are really at a loss of words right now, and the amount of stress > and anger we are all feeling cannot be described. <gentle snip>He's been [quoted text clipped - 29 lines] > hands. We ask him to move his feet, he is able to wiggle his feet, etc. > <snip> Hello David, I can empathize. It was gut-wrenching hearing from the doctor that nothing more could be done for my Dad. He'd had cancer some years earlier; cured surgically but was dying of other causes. We, siblings had fits at the nurses and wanted them to put tubes etc back in, until the doctor kindly came and explained the situation to us. We'd been through something similar with Mom, who died within weeks of diagnosis of lung cancer. It's very painful and hard to accept that nothing more can be done, I know. I suppose it's possible to pull him out of there, but think about it first. You probably would be putting him through a lof of stress, anguish and discomfort, only to hear the same answer, from another hospital, after they've examined him and reviewed the situation. Please know you and your family are in my thoughts and I hope that you'll spend as much time as possible with your father. I'm sorry. I don't know what else to offer but a sympathetic and caring heart to you and yours. We're here, anytime, listening and caring. J > We are really at a loss of words right now, and the amount of stress > and anger we are all [quoted text clipped - 61 lines] > months and now the doctors come and tell us this... we just don't know > what to say. I am so sorry to hear of your situation and my heart feels for you. It really isn't an easy situation but what you truly have to think of is what is best for your Dad, consider his quality of life. The doctors will have his best interests at heart and won't want to prolong any suffering. I faced a similar call with my husband, he had a GBM brain tumour and during the last stages he was suffering so much that they sedated him. I had to give permission to continue with the sedation even though it would mean that I would no longer have any form of communication with him, to me it signified the end and I had to agree with it. It was very hard, but I put my husband first and I now view it as my final act of love. It's not easy truly, but then I think nothing about the illness is. it throws us all on a rollercoaster Warm Hugs to you and your family right now. Alayne I read your posting with a heavy heart, unfortunatley the terrible burden of making life or death decisions is put upon loved ones - who can only make the best decision possible with the information given to us by the powers to be (Doctors etc) and of course our hearts. You say your father is mildly sedated and is responding to simple questions - have you considered asking your father in simple yes or no answers what his wishes are? Just a thought.......... Anyhow, I wish you, your family and of course your Father the strength you need to get through this difficult time. Sandy > >> I need to also state that, although he is mildly sedated, he still > opens his eyes when we [quoted text clipped - 8 lines] > months and now the doctors come and tell us this... we just don't know > what to say. Sometimes, when doctors share their wisdom with a family, it comes so quickly or with such shock that the family does not react logically or ask the right questions at the time in the time allotted. Then the family goes home and new questions come to mind and they wish they had asked them earlier. I'm in disagreement with Steph and the others on this, but maybe because I don't have all the information needed. If the doctors are saying "He's not getting any worse" how do they know that it is not the treatments that are keeping him stable? You say that the docs claim that the drugs are "not working". Well, if he is not getting worse, then it sounds to me like they in fact ARE working. Isn't that the definition of successful treatment - to retard or HALT the progress of a disease? Sure, the docs should not prolong suffering. But just how much suffering is your dad enduring? You don't say, and this is an important question. I think that his opinion should be factored in of course, but only after the doctors clear up the apparent confusion I mentioned to you and to him. I would call for an immediate conference with the med staff. If they convince you that no treatment is the best treatment, then indeed it is best to let go of life, but with dignity and thankfulness. >We are really at a loss of words right now, and the amount of stress >and anger we are all [quoted text clipped - 61 lines] >months and now the doctors come and tell us this... we just don't know >what to say. > Sometimes, when doctors share their wisdom with a family, it comes so > quickly or with such shock that the family does not react logically or [quoted text clipped - 20 lines] > convince you that no treatment is the best treatment, then indeed it > is best to let go of life, but with dignity and thankfulness. Good idea, Joe. In his previous post, he explained that his father's got a type of Herpes infection in his brain and paper-thin gut. They've already tried antibiotics, which usually don't do much for viral infections. The treatment for acute gvhd grade4 is steroids, which he's been given but would just make the gut worse. So, in my non-expert opinion, he won't be able to eat due to risk of sepsis and he's already lost a lot of weight and weak. It's a difficult situation. I would think he's too weak to risk removal of his "gut" (I assume they mean his colon and/or bowel). Even if they could, that still doesn't address the brain infection, (for which is probably more steroids). Steroids can mean poor healing. Vicious cycles. The friend I mentioned to him, in another post, was successful as far as the brain lymphoma, to some extent, shrunk one, one disapeared, one remained, but the problem with her as well was an odd infection in her lungs causing thick phlegm. She's been hospitalized many times. They finally said that's all they could do and instructed her partner on how to pound her back frequently daily) to try and get the sticky stuff up. Similar to what they do for cystic fibrosis. That was 4 years ago and she continues to deteriorate, but not as severe as Dave's father, although there's been a recent (apparent) deterioration, causing her to move closer to family.. J > Good idea, Joe. > In his previous post, he explained that his father's got a type of Herpes > infection in his brain and paper-thin gut. They've already tried > antibiotics, which usually don't do much for viral infections. You are only partially correct, there are anti viral drugs. The > treatment for acute gvhd grade4 is steroids, which he's been given but would > just make the gut worse. That is untrue.....cyclosporine is also used as a standard. http://www.marrow.org/PHYSICIAN/Adv_in_Auto_Allo_Tx/Imprv_Mgmt_of_Graft-Versus-H os/index.html If acute GVHD does develop after transplantation, glucocorticoids such as methylprednisolone or prednisone in combination with cyclosporine are administered. Satisfactory responses to this steroid treatment are observed in 50% to 75% of patients. New drugs and new strategies are available now or are in clinical trials that can supplement standard treatment, including: Monoclonal antibodies (e.g., anti-CD3, -CD5, and -IL-2 antibodies) Mycophenolate mofetil Alemtuzumab (Campath) Antithymocyte globulin (rabbit ATG) FK506 Sirolimus [7] So, in my non-expert opinion, he won't be able to > eat due to risk of sepsis and he's already lost a lot of weight and weak. There are ways of feeding people who can't eat, TPN and Tube feedings. > It's a difficult situation. I would think he's too weak to risk removal of > his "gut" (I assume they mean his colon and/or bowel). Even if they could, > that still doesn't address the brain infection, (for which is probably more > steroids). Steroids can mean poor healing. Vicious cycles. Certainly a patient with GVHD is critically ill. I can understand the dilemma of protecting patient rights and not prolonging futile care. Only the clinical team, the ones treating the patient can give an educated decision. Joe is right a family meeting with the team in in order. Transplantation Team is a very unique and highly trained team. I would lean on their judgement. > Certainly a patient with GVHD is critically ill. I can understand the > dilemma of protecting patient rights and not prolonging futile care. Although I don't see much evidence of that......... . > > Certainly a patient with GVHD is critically ill. I can understand the > > dilemma of protecting patient rights and not prolonging futile care. > > Although I don't see much evidence of that......... Patient wants everything done ( every invasive measure) even if futile, wants to go down fighting. Doctors want to pull the plug. What evidence do you require? Are you contesting a patient with GVHD is not critically ill? > . >> > [quoted text clipped - 8 lines] > > Are you contesting a patient with GVHD is not critically ill? You have a comprehension problem, don't you? First of all, my comment was that I can see no evidence that YOU understand the dilemma of protecting patients rights........... Secondly, I made no comment about whether someone with GVHD is critically ill. This man clearly is, and his physicians have decided that further aggressive treatment is not in his best interests. You think that doesn't matter if the patient wants to continue with pointless, nasty interventionist treatments which have no chance of being of benefit? Third, those who naively believe that when it comes to medicine, the "customer" is always right, have strayed far from the path of wisdom. If someone comes into my office and asks me to amputate a perfectly good leg, just because that is what they want, should I do it? What is the difference when someone is asking me to do something nasty and pointless which I know will make the situation worse? What's the difference? > > . > >> > [quoted text clipped - 6 lines] > when someone is asking me to do something nasty and pointless which I know > will make the situation worse? What's the difference? In my home state we have a document called Advanced Directives. This is where a patient designates a person to make medical decisions The person is told to make medical decisions on the person's behalf. They are to honor what the patient expressed. This man expressed he wanted everything done. The son is trying to honor his request. The doctors have offered very aggressive treatment, if they didn't have any other treatment there wouldn't be an issue. In fact there is treatment availalble and it isn't as crazy as amputating a leg. The issues is prolonging care despite no chance of recovery. The most famous one in my area is http://www.boston.com/business/articles/2005/02/17/hospital_tries_to_end_patient s_life_support/ It would not be my choice to keep my loved one around but the local law does support the patient/family rights. To answer this poor man's question, best to seek out advice from the healthcare team Joe gave the best advice, a family meeting to discuss the care. There are many cases where treatment is futile best is to try to work out an agreement with the family and not go the legal route. I am not saying that futile care is right, but doctors in my home state do not have the legal authority to cut life support despite their personal feelings. > > <usenetgirl@gmail.com> wrote in message > >> > . [quoted text clipped - 16 lines] > everything done. The son is trying to honor his request. > The doctors have offered very aggressive treatment, ????? He may have been on aggressive treatment but now they don't want to continue it for what looks to me like very good reasons. > if they didn't have > any other treatment there wouldn't be an issue. In fact there is > treatment availalble and it isn't as crazy as amputating a leg. In my book, it would be patient abuse - he already has a brain infection. Quotes from Dave 2 weeks ago - From what we've been told, it seems if his gut does not start to heal things aren't looking good -- as he would be bound towards another infection soon, and a fatal one at that." - Friday " today the doctors pulled us in and told us the drugs they're giving him aren't working. He's not getting "worse", but at the same time he's not getting better." cyclosporine is an immunosuppressant, which could make the brain virus infection worse (and require steroids for the swelling and seizures) and make him more susceptible to sepsis with the paperthin gut. And steroid would continue the thinning..and other side effects. I don't know what makes you think his BMT doctors aren't involved in this decidion and haven't explained the situation to the family. His father's on the Hematology and BMT ward of the hospital. The hospitals palliative care consultation team includes three doctors, eight nurses, two advanced-practice nurses, a part-time social worker and a chaplain. They serve patients at the General and Civic campus and the Ottawa Regional Cancer Centre. J http://en.wikipedia.org/wiki/Graft_versus_host_disease Clinical Manifestation Classically, acute graft-versus-host-disease is characterized by selective damage to the liver, skin and mucosa, and the gastrointestinal tract. Newer research indicates that other graft-versus-host-disease target organs include the immune system (the hematopoietic system -- e.g. the bone marrow and the thymus) itself, and the lungs in the form of idiopathic pneumonitis. Chronic graft-versus-host-disease damages the above organs, but also causes changes to the connective tissue (e.g. of the skin and exocrine glands). GVHD of the GI tract can result in liters of watery diarrhea per day, abdominal pain, nausea, vomiting. This is diagnosed via intestinal biopsy. Liver GVHD is measured by the bilirubin level in acute patients. Skin GVHD results in a diffuse macularpapular rash sometimes in a lacy pattern. Acute GVHD is staged like the following - overall grade (skin-liver-gut) with each organ staged individually from a low of 1 to a high of 4. Patients with grade 4 GVHD usually have a poor prognosis. If the GVHD is severe and requires intense immunosuppression involving steroids and additional agents to get under control, the patient may develop severe infections as a result of the immunosuppression and may die of infection. J said... > > This man expressed he wanted > > everything done. The son is trying to honor his request. > > The doctors have offered very aggressive treatment, > > ????? He may have been on aggressive treatment but now they don't want to continue it for what > looks to me like very good reasons. Sounds to me like everything HAS been done. It's not easy - in fact if may be the hardest thing any of us ever has to do - but there comes a time when the best thing to do is to let go. > .Usenetgirl wrote: > > > This man expressed he wanted [quoted text clipped - 7 lines] > may be the hardest thing any of us ever has to do - but there comes a > time when the best thing to do is to let go. True Em, But he does have options (to stop them removing the ventilator and/or get his father back on active treatment), but there's no point in my listing them, unless I know he's reading and he hasn't replied since he posted, Thursday. So maybe he's exploring them or ?? (don't know since he hasn't posted since) J J said... > > .Usenetgirl wrote: > > > > This man expressed he wanted [quoted text clipped - 14 lines] > since) > J To be brutally honest, if I were the OP I'd be so put off by all the arguments that have ensued from such an emotive first post I'd have buggered off and not come back. {{{{Hugs}}}}} for the OP if he's still around. He has a difficult time ahead of him.  SignatureEm > To be brutally honest, if I were the OP I'd be so put off by all the > arguments that have ensued from such an emotive first post I'd have > buggered off and not come back. My guess is he hasn't even had time and got his answers from the hospital and/or doctors. He posted the same question to 3 newsgroups and never replied (to them) there either. They (some of them) probably lurked here to watch the discussions. He's a student, so yes, probably had (and has) a lot on his hands and mind this week. And there've been others who've done, what I call "fly bys" - a post that later gets answered at their end and then we never hear back. Or when they come back, they start a new post, because the situation has changed (ie update) so he may never see the arguments. If he does, well, there's strong opinions here and that happens, at times, on newsgroups. > {{{{Hugs}}}}} for the OP if he's still around. He has a difficult time > ahead of him. I think we all agree on that. J I've read all the postings here and someone suggested to ask the patient what HE wanted. True....but the time to ask the patient is *years* before you get into any life-or-death-in-the-hospital situation. I recall years before my mom died (heart attack), that she expressly said she did not want to be kept alive "by artificial means." It should be up to the patient and his family, and NOT the doctors in question. Someone mentioned Terri Schiavo....that I think is a completely different situation and not at all similar to what the poster of the original thread is asking here, so I don't think comparable comparisons could be accurately made. Now if the doctors want to "pull the plug" and refuse any further treatment of your loved one, that's malpractice and that calls for a lawyer. > Now if the doctors want to "pull the plug" and refuse any further > treatment of your loved one, that's malpractice and that calls for a > lawyer. This conversation is getting silly. The first mandate of a Doctor is to "do no harm". How do you know what procedures will not harm? How do you know that prolonging life is possible if a Doctor says it is not? What gives you the right to question the moral conduct of a Doctor with the use of lawyers when they cannot perform the impossible? At what point do you STOP torturing someone who IS dying with treatments that are NOT helping but rather hurting? No matter how much we want the people we love to live, we cannot hold a gun to the heads of the Doctors who care for them expecting a miracle cure or more time when it is not possible. It is not always up to the family or the person involved. Do you really think that the people who work in the hospitals don't want to save people or that they are giving up sooner because they are late for a coffee break? Healthcare may be a basic right, miracles are not. At some point there should be peace and time for the sufferer and family without the intrusion of tests and procedures that are not helping. There is no dignity in fruitless desperation. Malpractice is a very inflammatory accusation. I would be very careful about tossing that one out when there are emotions running high already. Do you really want to alienate the people who are caring for you or your loved one when they most likely are doing their best already? Waving the legal stick will not produce a different outcome but will certainly make things much more stressful and upsetting. If you really have questions, get a second opinion. Just don't expect a different answer. Nina Nina, The trouble is not a person here is an expert in this man's case. To make an educated guess a clinical exam and careful review needs to be done. The issue is that doctors in the US do not have the final say to withdraw care or institute care - the patient or family does. The issue is does a patient who is very sick and has been offered the most aggressive care possible by a team of doctors, now mechanically supported with little chance of recovery not be offered further treatment. Unless all doctors are in complete agreement ( which hard to find all doctors in agreement) that the man has 0% of recovery and the family is not in agreement, the family could go to court ( at least in my home state) and demand further treatment. The doctors in response could petition to be removed. An ethical team could be involved trying to broker a compromise. Doctors and nurses are not allowed to be the health care proxy, so counting on your doctor is not going to work at least in my home state. Um, well, we are not talking about care, we are talking about treatment. Those are two totally different things. The header from the original poster refers to treatment. I'm not from the U.S. but I hardly think that the patient or the family can demand treatments when they are not considered to be of any value. You cannot go into your Dr's office and demand chemo just because you want it. You cannot demand to stay on medication that is proving to be doing nothing but harm. There is no reasonable court in the world that will uphold those demands. If the Dr or team of Drs is in consensus that there are no treatments left to try and that the original treatment plan is not working you have no leg to stand on. I will reiterate, we are not talking about care we are talking about treatment plans. Palliative care is still care, it is not treatment of a disease. When you are out of options that's it, you are out of options. No court can magically come up with and enforce a treatment option that does not exist. If the healthcare system in the U.S. is based on finding any Dr who will inject anything they can charge money for just because the family demands it, then you have a real problem there.That is negligence. I suppose that is where all the conspiracy theories about healthcare come from, and no wonder. Nina > Nina, > The trouble is not a person here is an expert in this man's case. To [quoted text clipped - 15 lines] > Doctors and nurses are not allowed to be the health care proxy, so > counting on your doctor is not going to work at least in my home state. > Nina, > The trouble is not a person here is an expert in this man's case. To [quoted text clipped - 3 lines] > The issue is that doctors in the US do not have the final say to > withdraw care or institute care - the patient or family does. That simply is not true. And the Terry Schiavo case is not on point. Of course to stop feeding and giving water to a comatose patient brings about death. But to stop giving pointless cyhemotherapy to a patient dying of metastatic cancer does not bring about death, nbeciuase it's pointless, or even less than pointless, harmful. The treatment is in no way keeping the patient alive. Can you not understand that? > The > issue is does a patient who is very sick and has been offered the most [quoted text clipped - 9 lines] > Doctors and nurses are not allowed to be the health care proxy, so > counting on your doctor is not going to work at least in my home state. I respectfully suggest you wouldn't know an ethic if it bit you in the arse. > That simply is not true. And the Terry Schiavo case is not on point. Of > course to stop feeding and giving water to a comatose patient brings about [quoted text clipped - 5 lines] > I respectfully suggest you wouldn't know an ethic if it bit you in the > arse. As far as Terry Schaivo went, it made money for the media, otherwise we would never heard of her. > I've read all the postings here and someone suggested to ask the patient > what HE wanted. True....but the time to ask the patient is *years* [quoted text clipped - 11 lines] > treatment of your loved one, that's malpractice and that calls for a > lawyer. In the US, perhaps. But in most countries, just because the patient has signed a piece of paper saying "I want everything done", should "everything" be done? Should the patient have a pointless operation? should the patient be given adriamycin when there is 0% chance of benefit and 100% chance of harm? Don't equate stopping active treatment with stopping care. The two are quite different. Nobody can make a patient go through treatment they don't want. But by the same token, nobody can make me give treatment I don't think is in the patient's best interests. Not even a lawyer > In my home state we have a document called Advanced Directives. This is > where a patient designates a person to make medical decisions The [quoted text clipped - 9 lines] > It would not be my choice to keep my loved one around but the local law > does support the patient/family rights. Try, JUST TRY, to encourage your tiny mind to step outside its self-constructed box for a second. Do you really think that patients who demand more chemotherapy, or more radiotherapy, or more surgery really want that? When a patient says they "want" more treatment, it's a surrogate for something much more sublime. The patient wants to be cured, wants to live longer, or wants better quality of what life remains. Nobody in his right mind "wants" chemo or radiotherapy. If you are too stupid to understand this concept I'm not sure how else I can explain it. The ethical imperative, which, despite your vast experience, you have neither thought deeply about, nor have any inkling of is this: the physician is required to everything within his power to do what is in the patient's best interest. Sometimes that means not agreeing to what the patient "wants" which, as I have just explained, is often not what the patient really wants. It isn't MacDonald's, thank God. Patients are not customers - they are very much more important than that, and sometimes, they need to be protected from their own, and their loved ones, unrealistic expectations of what can be achieved. You should be ashamed of yourself, claiming long experience in oncology, to suggest otherwise. > > . > >> > [quoted text clipped - 6 lines] > when someone is asking me to do something nasty and pointless which I know > will make the situation worse? What's the difference? In my home state we have a document called Advanced Directives. This is where a patient designates a person to make medical decisions The person is told to make medical decisions on the person's behalf. They are to honor what the patient expressed. This man expressed he wanted everything done. The son is trying to honor his request. The doctors have offered very aggressive treatment, if they didn't have any other treatment there wouldn't be an issue. In fact there is treatment availalble and it isn't as crazy as amputating a leg. The issues is prolonging care despite no chance of recovery. The most famous one in my area is http://www.boston.com/business/articles/2005/02/17/hospital_tries_to_end_patient s_life_support/ It would not be my choice to keep my loved one around but the local law does support the patient/family rights. To answer this poor man's question, best to seek out advice from the healthcare team Joe gave the best advice, a family meeting to discuss the care. There are many cases where treatment is futile best is to try to work out an agreement with the family and not go the legal route. I am not saying that futile care is right, but doctors in my home state do not have the legal authority to cut life support despite their personal feelings. I think you missed the question, do doctors have the right to stop treatment? The short answer is maybe. It seems if you live in Canada doctors can stop or with hold treatment. In my home state we have a document called Advanced Directives. This is where a patient designates a person to make medical decisions The person is told to make medical decisions on the person's behalf. They are to honor what the patient expressed. This man expressed he wanted everything done. The son is trying to honor his request. The doctors have offered very aggressive treatment, if they didn't have any other treatment there wouldn't be an issue. In fact there is treatment availalble and it isn't as crazy as amputating a leg. The issues is prolonging care despite no chance of recovery. The most famous one in my area is http://www.boston.com/business/articles/2005/02/17/hospital_tries_to_... It would not be my choice to keep my loved one around but the local law does support the patient/family rights. To answer this poor man's question, best to seek out advice from the healthcare team Joe gave the best advice, a family meeting to discuss the care. There are many cases where treatment is futile best is to try to work out an agreement with the family and not go the legal route. I am not saying that futile care is right, but doctors in my home state do not have the legal authority to cut life support despite their personal feelings. >I think you missed the question, do doctors have the right to stop > treatment? [quoted text clipped - 3 lines] > do not have the legal authority to cut life support despite their > personal feelings. In my state, it is a living will, as well as the designated person to make decision. You certainly have no clue toward medical ethics of today, but of course, you haven't been on the other end, and had to watch someone suffer and die. I personally put my care in the hands of a Doctor, rather than a debater. I don't think the government would agree with you. Remember Terry Shavio? Anyways it won't be you doctor who has the final say, it will be you or your designee. I am not discussing medical ethics rather law. I am not a laywer but there is certainly enough in the newspaper to keep my informed. >I don't think the government would agree with you. Remember Terry > Shavio? Anyways it won't be you doctor who has the final say, it will > be you or your designee. > > I am not discussing medical ethics rather law. I am not a laywer but > there is certainly enough in the newspaper to keep my informed. I really didn't expect any other answer from someone like you. Thank God that in most countries of the world, medical ethics trumps government directive. . > > Certainly a patient with GVHD is critically ill. I can understand the > > dilemma of protecting patient rights and not prolonging futile care. > > Although I don't see much evidence of that......... Patient wants everything done ( every invasive measure) even if futile, wants to go down fighting. Doctors want to pull the plug. What evidence do you require? Are you contesting a patient with GVHD is not critically ill? > We are really at a loss of words right now, and the amount of stress > and anger we are all [quoted text clipped - 61 lines] > months and now the doctors come and tell us this... we just don't know > what to say. It sounds as if medicine has taken your dad as far as it can go. There is a tendency for lay people to think that there is an answer to every medical problem and you can just keep on treating each new problem that arises. The reality is that if the underlying disease is not curable (and the leaukaemia obviously isn't) the problems and the treatments accumulate and become horribly complex. This is the point at which you and they have to ask yourselves what you are going to achieve by continuing on this treadmill. If you stop treatment at this point it doesn't mean you or they are killing your dad it is just an acceptance that there is a better way. I have even seen patients at this stage make a small though temporary improvement when treatment stops which can make you question whether treatment should, indeed, have been stopped. This improvement, however, has more to do with stopping the drugs and/or iv fluids than the disease state improving. So you have a choice. Do you treat him to death or do you allow nature to take it's course in a more relaxed environment. You could also give some thought to the possibility that someone with a real chance of survival could benefit from the icu bed. Your father may, if given the chance to take part in any decision-making, even be the kind of person to say " enough, I've had my chances, take me to a quiet place where I can be with my family and be a father for my last days!" When you make the move I know just how right you will find the experience. MIKE |
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