[AnnieB3]

There's a story in the news here that simply is too much for me to handle. It cuts too close to "home." This could easily have been my Dad, for he was "cared for" at this hospital as well, having dialysis there on a weekly basis. My Dad, thankfully, was coherent, which I guess is a determining factor by these HMO "gods" as to when life should end.

http://www.startribune.com/lifestyle...UoD3aPc:_27EQU

I have to wonder if this is yet another case of an elderly person getting misdiagnosed, as his wife says in the video. They say he has dementia. Is that instead a B12 deficiency? He had episodes of choking and you have to wonder if he has a neuromuscular disease. I have no idea what is his state of health. Maybe he is near death but I know of people who live into their 90's or past 100, with the right care. But his situation brings up some important issues for those of us with MG.

Do you guys have a health directive, which is often within a living will?
Do you have a "regular" will?

Apparently, even if you are very specific and have a proactive family member or friend, an HMO can come along and "declare" that you can't get any more care but hospice care. This hospital has gotten it "wrong" so many times in the past and not only with my care. What if I end up in an MG crisis again and can't speak? This is the place that made me wait four days for treatment (other than oxygen) during my MG crisis.



If HMO's can override a patient's wishes, what else can they do to us? Do you understand how serious this move by the HMO is? This sets the precedent that a doctor or a group of them can do whatever they want because "They said so." Very dangerous. There have been other precedents about "forcing" care, like forcing a teen to have chemotherapy. But to completely ignore the wishes of an adult patient, when it is in writing and legal? Scary.

This is a serious breach of ethics, in my opinion. And there are none more vulnerable than those of us who are sick and may not be able to speak for ourselves. This hospital's daily mantra probably is: "Save money, not patients." When those in power, absolute power in this case, abuse it, that should not be tolerated.

If you guys do not have a health directive/living will and a regular will in place, it might be a good idea to get one. I'm working on mine, which is long overdue. Though I think I may have to move to another state, or country, to get unprejudiced care.



Annie

[alice md]

Annie,

I have no way to know if his physicians are making a medical mistake-eg missing a diagnosis (which is always possible and I too have seen patients this age who improved tremendously with change of meds. including vitamin B12-even though they supposedly had normal values, and even saw lymphoma presenting in this way in an elderly patient).

I have no doubt that they are make a humanistic mistake. their role as physicians is to help those who suffer and provide the best possible care. their role is to support them and their families through it and their role is to fulfill their wishes, regarding their medical situation in the best possible way.

end of life decisions are very important and should be discussed. they are also dynamic. what would have seemed to me as impossible existence may now be seen as a life worth living. there is no way in the world you can know how you would truly feel under a certain situation. I can tell you now that if it ever comes to it, I do not want to be intubated and change my mind completely if this happens and a truly caring and compassionate physician makes me feel differently, and I realize that if I refuse intubation I have given up on any chance for ever recovering or living at all, and maybe living with a tracheostomy is better then not living at all.

physicians like to put patients in convenient boxes. and those just don't exist.

I just went over my rehab's physician letter from more then 2 years ago.
he wrote there that I have severe generalized refractory myasthenia, that what rehab can do is limited, that I should be given emotional support by a psychiatrist and psychologist as such severe disabeling symptoms obviously affect my emotional, family and social situation. and that I need a companion to be with me all the time, so that my family can be free to live their normal life. (at that time my son was temporarily taking care of me).

I called him the next day, and asked him to cross out all the psyche. BS and write instead-every effort should be done to help her return to work.
He said- OK, if if makes you feel better I will do that.

When I came to see him a year or so later, he was amazed to see that from all his recommendation I took the one that I should have a companion ( I realized that I can't function much professionally or even at home without that), but that other then that I was working, and even went back to my role as the head of a small unit. (my dept and hospital were ready to wait for me to come back and someone took my place only temporarily for the 10 months of my leave of absence).

a few days ago, I set next to a very ill patient, and told him this story-Of how utilizing all my clinical skills and emotional abilities I managed to find the way from being nearly bed-ridden and respirator dependent a good part of the time to the way I am now. I could see the smile come back to his face when I told him that, because he understood that just like I was not ready to give up on me, I am not going to give up on him.

He then told me a story- He said that once there was a tailor who was ready to mend every suit or clothes no matter how torn they were. he would work day and night so that he could get everything fixed. one day a friend asked him-why are you working like that. the tailor answered- what ever was torn can always be fixed, as long as there is enough light left in the candle.

we are not gods and we do not have the right to decide who's life is worth living and who's life is not. what to us as healthy people seems as impossible existence, may be very different for someone else and vice versa-if someone's life is not worth living in his/her eyes due to a severe illness, it is not for us to decide if it is.

[mvoyvodich]

Great questions! In fact, the same questions came up when I did my muscle biopsy because they were putting me under they asked me if I had a will, trust or advanced directive. I was like "no", but it really got me thinking and I think I am going to do it. I have spoken to my mom and sister about what I want, but it would probably resolve a lot of issues should the time ever come (heaven forbid). Unlike most people, I don't want to be recessitated and I do not want to be on any machine to help me breath or otherwise. I rather just die naturally and not prolong the next step on my journey. Sounds morbid, but I am really at peace with death and am not scared. I accept it if it's in my path. I have a feeling though, that there is a long time before that day will come. ( =

Originally Posted by AnnieB3

There's a story in the news here that simply is too much for me to handle. It cuts too close to "home." This could easily have been my Dad, for he was "cared for" at this hospital as well, having dialysis there on a weekly basis. My Dad, thankfully, was coherent, which I guess is a determining factor by these HMO "gods" as to when life should end.

http://www.startribune.com/lifestyle...UoD3aPc:_27EQU

I have to wonder if this is yet another case of an elderly person getting misdiagnosed, as his wife says in the video. They say he has dementia. Is that instead a B12 deficiency? He had episodes of choking and you have to wonder if he has a neuromuscular disease. I have no idea what is his state of health. Maybe he is near death but I know of people who live into their 90's or past 100, with the right care. But his situation brings up some important issues for those of us with MG.

Do you guys have a health directive, which is often within a living will?
Do you have a "regular" will?

Apparently, even if you are very specific and have a proactive family member or friend, an HMO can come along and "declare" that you can't get any more care but hospice care. This hospital has gotten it "wrong" so many times in the past and not only with my care. What if I end up in an MG crisis again and can't speak? This is the place that made me wait four days for treatment (other than oxygen) during my MG crisis.



If HMO's can override a patient's wishes, what else can they do to us? Do you understand how serious this move by the HMO is? This sets the precedent that a doctor or a group of them can do whatever they want because "They said so." Very dangerous. There have been other precedents about "forcing" care, like forcing a teen to have chemotherapy. But to completely ignore the wishes of an adult patient, when it is in writing and legal? Scary.

This is a serious breach of ethics, in my opinion. And there are none more vulnerable than those of us who are sick and may not be able to speak for ourselves. This hospital's daily mantra probably is: "Save money, not patients." When those in power, absolute power in this case, abuse it, that should not be tolerated.

If you guys do not have a health directive/living will and a regular will in place, it might be a good idea to get one. I'm working on mine, which is long overdue. Though I think I may have to move to another state, or country, to get unprejudiced care.



Annie

[Stellatum]

I found a "durable power of attorney for health care" form for my state on-line. Evidently, you don't need a lawyer--for my state, anyway, you just sign it in the presence of two witnesses (or one notary public).

Power of attorney means that you appoint someone to make decisions for you if you can't make them for yourself. Another option is a "living will" in which you specify what decisions you want made in different situations.

Abby

[AnnieB3]

I suppose I should've been more helpful about this topic, instead of utterly incensed by what this couple is going through. Here is some basic info.

http://liv-will1.uslivingwillregistry.com/forms.html

Alice, I knew you would understand this issue. The very fact that this HMO thinks it has the right to make those decisions makes me afraid for the future of all patients. Are they now going to put a "death algorithm" in place? Like, you can be 85 years old and be able to live as long as you are alert. But not if you have an infection. Or if your kidneys are failing.

No one has the right to tell me when I should die.

Mvoyvodich, It can be overwhelming to think about putting a will or health directive together but it doesn't have to be. And you can change it at any point. You have to let your family and/or friends know about it too. And it helps if everyone agrees to your wishes or at least to abide by them so there won't be a feud while you are in a coma or on life support!

Thanks, Abby, for the info. The problem I was trying to point out here is that even with those things in place, HMO's are now trying to "dispose" of both the legality and the patient. Makes me ill.

To make matters worse, I believe they are trying not to diagnose this patient because then this woman would have a reason to sue them. If he doesn't get a diagnosis, they can claim that he was at the end of his life for no apparent reason other than kidney failure. It's a delightful new game those in medicine are playing. If you don't definitively diagnose a patient, they can't sue you for not helping them. And if they make you wait until the statute of limitations for medical malpractice run out (in your particular state), then they can help you and not be liable. It seriously is all about covering their behinds.

This situation has been handed over to a medical mediator who will make medical decisions until the delayed court date. Can any of you imagine not being able to make health decisions for yourself and then having a stranger make them for you instead of your family? This topic is very troubling.

Annie

[craftyRCC]

I'm still not sure what to say, I've always felt it was the patients right to choose. No matter what a family member or an insurance company might want.

Sadly this isn't always the case, no matter what kind of advanced directive you might have in place there is always a way around it.

Before I got sick I didn't even want CPR done to save me! (I'm a nurse and have seen my fair share of not so successful CPR recipients, it's not always like the movies) While they were trying to figure out what was wrong with me they brought up the ventilator question. It brought me to my knees. More than anything else I never, never, wanted to be placed on a vent. I couldn't even begin to imagine, I put off the decision in the hopes that we would figure things out before I ever got to that point. Now I know I might just need that vent for a bit to get me through a crisis. I know I will have to make some serious choices to update my AD......

It's heart wrenching to watch a loved one struggle for every breath until they finally pass away, even with medication to relieve some of the suffering. But no matter how difficult it's THEIR right, who are we to go against their wishes.

Rachel