knowing the legalities

[lilyjohn]

Recent events have made people more aware of how important it is the make and Advanced Directive. This is certainly a good idea but one that a person needs to understand the legalities of.

Because a DNR is the one part of a Living Will or Advanced Directive most people hear about they do not realize that there is much more to it. This can be not only misleading but dangerous.

An Advanced Directive gives you the oportunity to state exactly what you do and do not want and under what circumstances. Signing a blank DNR is really not the best idea. That will mean that under no circumstances will you be revived if your heart should stop or you should stop breathing. There are many cases where a person needs their heart restarted and goes on to live a long and normal life. The same is true for a ventilator. There are instances where a ventilator is needed only temorarily especially in the case of drug overdose.

When a person makes an Advanced Directive they should make it very spacific. There is another part of the Advanced Directive that is just as important and that is a Durable Power of Attorny. That is a person that you appoint to see to it that your wishes are carried out. They are not charged with making decisions for you unless you are not spacific enough.

The person you appoint should be someone you trust to fight not only to see that your wishes are carried out but that you recieve all of your rights as a patient. They should know what those rights are and know who to call on if they find that your rights are being denied you.

If you do not chose a Durable Power of Attorny there is a spacific legal order of who will be responsible to make decisions for you. If you are married your spouse has that right. If you are not married it falls to your oldest child and if he or she is not available it goes to the next. After the children the parents have the responsibility then to siblings.

If none of the above is available or if you have not chosen anyone the doctors make all decisions for you. Naturally this only comes into play when you are not able to make your own decisions but the catch here is that the doctors are the ones who decide if you are capable of making your own health care decisions. It can fall to the courts if you dispute with the doctor but that can be long and drawn out. Many things can happen to you during the time of dispute. It is important to know too that there are some drugs that can make a person seem incapable in less than five minutes.

It is very important that everyone know their rights and the value of an Advanced Directive. Some people have someone who would get responsibility for them that they would not want to have it. The only way to be certain is to chose someone you trust and do it legally.

Patient's rights are not always made clear but there are a few that are well known that everyone should be aware of. They are the right of Informed Consent. The right to not be restrained either physically or by drugs. The right to privacy and the right to be treated with respect. You also have the right to refuse any treatment without giving a reason and you can not be denied care because of that refusal. These are just some of your Patient's rights. Knowing them is important but believe me I saw first hand that those rights are not always followed. That is why eveyone should not only know what they are but who to contact when one of those rights is denied or abused.

I'm sure there are others who know even more about this subject than I do. I just want to make sure that people are aware and protect themselves to the best of their ability. These issues do not go away and most people will have to face them at some point in their lives.

Just remember knowledge is power!

[mdsum1]

It's interesting that you said that the patient has the right to refuse any treatement without fear of being denied treatment. My Dad had colorectal cancer which had spread to his lungs. He developed fluid in his lungs which they finally drained and said that there was cancer cells in the fluid. They had previously been treating it as pneumonia. My father didn't want to be placed on a ventilator or have a DNR for fear that at his age (67) he felt the Drs wouldn't do all they could for him. He appointed my sister & stepmother power to make decisions if he were unable to do so. My Dad was badgered at least 5 different times about signed a DNR even told by the Drs how wrong it was to do this to his family and how horrible it would be to be put on a ventilator. At one point the Drs wanted to move him to ICU to be placed on a different type of oxygen machine and he refused to go...they at first said that would mean he was effectively placing a DNR on himself. They explained basically that they didn't want anyone coding in thier unit due to the frenzy of Drs & nurses and loss of care to the other patients. We told them that the 2 people who were able to make that decision if it came to it would be on that floor at all times and that they would make that call if it happened. I think on looking back at things that this is where treatment stopped. They stopped the radiation on the tumor in Dads but they also refused to drain the fluid from his lungs again saying that it would just come back. Dad wanted so bad to try to fight the cancer even if he only got the 20 months (he actually on got to live 3 months) that they gave him. He received 4 radiation treatments and never got a chance to try the chemo. We found out from a nurse just an hour before he passed away that he was marked as a DNR. We wonder how this could have been when we had made it clear that the situation would be dealt with if it came to that? At first we thought that Dads way of thinking was 'just Dad being paranoid' but now we think that like always he was a very smart man and knew all along how the Drs viewed him. Sorry this is so long but your recent postings have really made me question my Dads treatment and we wonder if maybe we should have done something different. I guess we should have demanded they drain the fluid from his lungs again because that really made him feel alot better....we just didn't know we could. The Drs made it sound like they don't do it a second time (I know better now). My SIL was diagnosed in Dec with NSCLC stage 3b so I'm trying to keep informed for her as she won't look at the boards.

[lilyjohn]

It sounds very much like your dad was treated the same as Johnny was. This just points out that even when you think you have taken all precations things can still be manipulated.

As I have said in previous posts I don't say these things to frighten people or to make them feel guilty about things that they really had no control over. It is so easy to question and blame yourself for things you did or didn't do. The problem is that those things come up so quickly and we have been trained all of our lives to trust that doctors will "do no harm". I suspect that most people don't know that doctors are no longer required to swear to that.

I really believe that there is a growing trend to rid our population of those who others decide have no quality of life. The problem is who can honestly judge another's quality of life? Johnny had had a lot of heartbreak in his life and he overcame it all. If they would have bothered to ask he would have told them that dispite his medical problems his quality of life was the best it had ever been.

I do not advocate the "right to die" neither do I advocate against it. Who knows how they will feel when and if the choice between death and suffering becomes something immediate instead of something in the distant future as we all think?

What I do advocate is a person's right to chose. I have seen that those rights no longer seem to matter. When I filed complaints with the medical board against the doctors and hospital envolved in Johnny's death I learned some very frightening things. Everyone of them were questioned to make sure that he had recieved the booklet stating his rights. Not one time were they interested in the fact that those rights were denied him. They actually admitted what was done to him but excused it because he had been diagnosed with Lung Cancer. It seems that when a person is diagnosed with Lung Cancer they are considered no longer deserving of thier rights

It is very upsetting to realize that medical boards made up of doctors and nurses have the power to decide that a person's life and rights no longer matter. Politicians harp about Mal Practice suits causing the price of insurance and medical care to go up. What they don't tell you is that many people who file suit do it out of desperation because it is the only avenue they have to try and get justice. I was told by an attorny that she gets complaints about things like what happened to Johnny all of the time. She also told me that when taken to court all a doctor has to do is say "he had lung cancer and was going to die anyway". It seems that a Lung Cancer diagnosis has become a licence to ignore a person's rights and to kill.

People can call me paranoid or say that I am too forceful in my opinions. If that is what it takes to save one person the agony that I have lived through or the heartless way Johnny was treated it is worth anything I do and anything anyone says about me.

The truth is these things happen everyday. Until people stand up for their rights or the rights of their loved ones it will not only continue to happen but get worse and more flagrant. It is very hard to fight the system but if we don't try we are helping the "right to die" become a "duty to die". I for one can not sit on the sidelines and let that happen without doing all I can to stop it. That is why I tell Johnny's story. That is why I am so insistant. Believe me when I say doing these things is not easy because each time I raise this issue I have to relive not only the memories but the images of those last days.

I ask anyone who has had an experience similar to ours to make your story public. Information is a tool that we can all use. Expreince can teach so use your heartache to reach out to others. If we can stop these things from happening to just one person it will be a first step. How can they ever hope to find a cure when they don't give people a real chance to live long enough to see what a natural outcome would be?