A different take on "Terminal Aggitation"

[Fay A.]

Recently this subject came up, and I pretty much kept my feelings on the subject to myself. I did the online equivalent of bite my tongue, which is painful no matter how one goes about it.

We all have our own ideas on what is right and what is wrong. I came across this essay on Terminal Aggitation, and though I do not agree with all the author states, I agree with a great deal of what is stated.

I know from personal experience how hard it is on the family members and caregivers when dealing with late stage illness in someone they love. I've done it. But I never let my Mother be drugged into a coma because it was rough on me or my siblings. She got to choose how much meds she wanted to control pain. We gave it to her as she directed, and it was far less than what was prescribed. When she was aggitated we sat with her and talked with her and let her tell us whatever she wanted. (It was mostly my one brother and I. ) So I know it is hard-exhausting-heartbreaking. But I kept in mind the times my Mother stayed up with my sister when she was ill. Anyway, as I've said before, I don't expect everyone to agree with me. Only my medical providers and those who say they love me.

http://www.wf-f.org/02-2-terminalsedation.html

[Elaine]

I am not totally against hospice in any way. However, I think there are a few things that people need to be aware of as far as hospice care. Oftentimes, if hospice is not called in until the "last minute" people don't really understand what hospice will and will not treat. That was the case when my father was "nearing the end" several years ago. There is bueracratic redtape involved with hospice--you need to know this. If you are under hospice care, the hospice provider is your main provider unless you revoke it. You must revoke it before you can get any other care, which means you can't revoke it in the middle of the night or on weekends. There is paperwork involved. This is my understanding.

My father had congestive heart failure. He was put on dialysis, not because his kidneys had failed, but because they wanted to take some pressure off of his heart so it could keep him alive and not have to do so much work. He was on dialysis for about two months prior to hospice. When unbeknownst to my father, hospice was called in, he was not allowed to go to dialysis.

So for two months his kidney's had not been "asked" to do their job and had shut down. By the grace of God, after three days without dialysis, during which time, I begged that he be taken to dialysis, becuase of the seisures kidney failure causes, his kidney's began to work on their own. If they had not, my father would have died an horrible death.

My father lived three more months past the day hospice was called in and gave his wife morphine etc and told us that the morphine would see to it that he was gone within a week since they assumed without dialysis, about a week is all someone without kidney function will live.

When he got a cold, he was not given antibiotics--the only way he could get them is that I got ahold of his family Dr and got the prescription and paid for it myself. Hospice would not give him antibiotics.

When my father had an allergic reaction to the morphine that he didn't need or want, I was told if I called 911 or took him to the hospital, he would be responsible for that bill and the whole hospital stay because he had not revoked hospice (even though he himself had not asked for or signed for hospice--his wife did). This was in the middle of the night, and while he could revoke hospice, there was paperwork involved that had to be done in the daytime.

You WILL starve to death unless you can eat on your own. You will not be allowed a feeding tube with hospice. I also imagine that if you get a bowel obstruction, you will die from it. You may not know that you have such an obstruction or let me say this: your family will not know because you will not be allowed any testing to see if you in fact do have an obstruction.

Maybe things have changed since 1996 when my these things happened with my father, but I don't think so. I am not going to go into all of the details of that horrid time, but I am forever leary of hospice now, and I urge people to really know well in advance what will and will not happen with hospice care. My father was taken advantage of and people who are ill, can easily have this happen to them. Of course, his wife had much to do with it him being put in that situation to begin with, but that is a whole other story.

Elaine

[lilyjohn]

Thank you Fay. I will add that one to the others that I have saved. It is not just that morphine can kill that is bad but that it can rob a person of so much. Myclonus is a violent sudden jerk of an extrimity. The morphine caused Johnny to have a severe case of myoclonus even before it put him in a coma.

Like the lady in this story he wanted everything done for him. He did not believe nor want to have his life end without doing everything possible to save him. His beliefs were not even considered. I believe when a person is deliberately medicated to death or denied treatment or the basic essentials to support life, it is not only inhumane but criminal. To me they are just as guilty of murder as if they had shot that person.

Unfortunately involuntary euthanasia is being used more and more to satisfy the needs of someone who has a reason to hurry up a person's death. Many times it is used to cover up the doctor's screw ups as in Johnny's case. The biggest problem that we face trying to change something like this is that it is the doctors who say when someone is terminal. Then they choose what to do about it. How many people are considered terminal but live months or years longer? There are many. Just look on this board and you will see that. Life is too precious to allow these things to continue happening. Maybe if enough people speak up and let people know what is really going on we may stand a chance to stop it before it gets to epidemic proportions.

[DeanCarl]

From the other side of the fence.

I am on hospice now and have been since I decided not to seek agressive treatment for my cancer. I have had nothing but good experiences with them. I have not been refused medications nor am I required to take meds I do not wish to take. Nor will I ever be. I have a very detailed "living will" that I, my family, AND the hospice folks have gone over. I have been assured both verbaly AND in writting that my wishes do not conflict with my hospice's policies and will be adhered (sp?) to. And they were very upfront with what they could and could not do GIVEN THE TYPE OF INSURANCE I HAVE.

While I am on hospice I can still be treated for non-cancer related things by my VA doctor often without leaving the comfort of my own home. Here's how it works: My hospice nurse comes over every tuesday for about an hour, sometimes longer. If there's anything I need to change or add to my meds that have to do with palative care for my cancer she orders those meds directly from the hospice pharmacy and I get them in the mail, usually the next day. If the problem is not cancer related she contacts my doctor. If meds are needed he orders them for me and I usually recieve them within two or three days. My nurse also calls ME back as soon as she's talked to my doctor to let me know what he said about whatever is going on. Since I've been on hospice I've had to make only one trip to the VA to verify I needed my oxygen. And I got the oxygen BEFORE I was verified due to the efforts of my hospice nurse.

On the flip side: I suppose there will come a time when Gay will need help caring for me. My hospice has in home help available ... but ... my VA insurance does not cover it. Notice ... the hospice has it and would be willing to use it ... it's my INSURANCE that's dropping the ball. BUT .... my hospice came up with a way to get Gay the help she may need by finding out that I am eligable for medical with no loss of my VA and medical DOES pay for a program called "In Home Supportive Services".

As with anything else, there are good hospice providers and bad. And, more importantly in my mind, there are good insurance companies and bad. It becomes, unfortunately, up to the patient and his/her family or caregivers to know exactly what a particular hospice provider can and can not do AND to make sure what the patients insurance policy covers and does not cover.

I agree with Fay on one VERY critical point. We ALL deserve the chance to make our own choices concerning our medical care. And I think anyone battling this illness should be aware of the fact there may come a time when we can not speak for ourselves concerning that care. So it becomes, in my opinion. VITAL that those who are directly concerned with our care know EXACTLY what we want and don't want and have agreed to that BEFORE the situation arises. I've already backed down one doctor since I was diagnosed. I'm not afraid to back down others if I need to. My feeling toward my care and my life is the old saying, "If you're not willing to help me get to where I want to go ... then get the he** out of my way!" The neat thing for me about that is out of the 5 or 6 doctors I've dealt with and the hospice folks also, I've only had to push ONE out of my way. Everyone else has understood and accepted what I'm trying to do and has helped in a TON of different ways.

Lucky? Yea, I suppose so. But I think it's also because I've been VERY clear and VERY adamant about what *I* want.

Dean

[Angie Daughter of Bill]

Fay and Dean

I agree with both of you. I don't think ANY medications should be pushed on a person. That is a personal choice of the patient. Whatever my Dad wants, I will do. He has been very clear, as Dean has. I, like Dean, have had a very positive experience with hospice. When my uncle had a brain tumor, we had hospice for him. They were wonderful. I truly don't know what we would have done without them. They came any time that we called. We always had calls returned promptly, etc. Hospice let US and my uncle choose what he wanted. He was alert up until the day that he died. He slipped into a coma one morning and was gone by night. The hospice nurse asked if we wanted to give him some morphine when his breathing became bad. My aunt did not. Hospice was fine with that. My uncle died peacefully after we had all said our goodbyes. As Dean said, there are good hospice providers and bad hospice providers. There are good doctors and bad doctors. That is why it is soooooo important for a patient to have a strong voice when they can not speak for themselves. Although, like in Lilyjohn's case, the doctor's didn't listen. It is sad when that happens. I'm sure it happens more than we know.

[Fay A.]

Like I said, I don't expect anyone else to agree with me. The way our society deals with serious, chronic illness makes it very clear that most DON'T agree with me. (I've always been amazed by how many change their minds when it is their turn to be the patient.)

I want to be certain to be out of the State of California before too long, because here if 2 physicians dictate that you are terminal-without a narrow definition of what terminal means-they can override any Living Will/Advance Directive you may have, no matter what you or your family wants. And they can stop treating you. And they don't have to justify it. Because our SOCIETY doesn't want to deal with this. Makes me think of the way some Native Americans (my Ancestors) dealt with the elderly and infirm...only with less honesty.

I am glad that you have found your Hospice to be a good fit, Dean. I didn't actually mean for this to be an anti-Hospice post, though I will admit that I don't buy into Hospice as it exists now, in this country,at all. But you know that already. I'm presenting my opposing view to the idea of drugging the terminal patient into a stupor unless that person WANTS to be drugged into a stupor. And some folks do. If they didn't we wouldn't have such a problem with alchohol and drug abuse.

The European idea/ideal of Hospice Care (my experience with it in the United Kingdom) was very different from my experience with it here in the USA. It was a fantastic program for the patient and the family.

[Guest]

Fay,

I hesitated posting because I usually don't and my sister's story is pretty grim. So be prepared if you continue to read on. It will be a year June 30th since my sister died not of cancer but of a perforated bowel. She went into the hospital because of intense pain which was attributed to a large tumor on her kidney. They radiated the kidney which reduced the pain; however, they did nothing for her bowel problems. She complained constantly about not having used the bathroom in 3 weeks. She was given diladin(sp) which is an opiate that causes constipation. Charlotte was suffering greatly and kept asking for enamas and laxatives which were given reluctantly. She spent three weeks being ignored in the hospital. Luckily, we have a very large family and took care of her ourselves. Her stomach started to blout until she looked about nine months pregnant and finally the GI doctor did an endoscopy. We were told she was impacted and he got out as much as possible. That day she was given tons of laxatives and spent all night on the pot. She woke up the next morning and threw up fecal matter. Two days later she was dead. So Fay I agree with you that no one should have to die of starvation, infection, or a bowel perforation but they do all the time. The day Charlotte died my sister and I had the first shift at the hospital. She was in a huge amount of pain and we couldn't get anymore pain medication until the doctor did his rounds. At some point my sister and I knew that one more shot of morphine and Charlotte would be out of pain. We couldn't do it but my family members who had the next shift could and did. I wish I would have and that's where I feel I let her down. Sometimes easing a love ones pain is compassionate. Cancer sucks and the way in which the establishment deals with terminal illnesses is a disgrace.

Best Wishes,

Mary

[lilyjohn]

I realize that I say things sometimes that are very unpopular. It is very frightening to be told that you can not trust the system that you have to depend on for your life or the life of a loved one. All I can say about that is that I wish someone had frightened me into having my guard up. I had complete faith in the system. I never believed that anyone in the medical profession would do something not in the best interest of the patient. Had I known mine and Johnny's situation would have been much different. At the very least his last weeks would not have been the nightmare that they were. I didn't realize what they were doing to him until the last minute as I stood watching him die in disbelief and shock. Even after his death I still trusted the system. I thought that when someone saw the wrong that had been done something would be done about it. I was very wrong. Because he had been diagnosed with lung cancer no one cared. Now I am the one who lives with guilt because I didn't see and do things differently. Losing someone you love is hard but being made a part of their death is much worse. It is an unending nightmare.

Like others I question why the things provided by hospice can not be offered to those fighting for their lives. I can only assume it is because it is much more cost effective to treat someone keeping them comfortable until they die than it is to fight the disease and have them making demands. I even heard an add on the radio advertising one hospice program. It said "if you or your loved one have given up all life saving treatment and expect to die within the next six months call us"

My only personal experience with hospice came while working at the assisted living facility and in corispondence with the man in charge of the national hospice public relations. I found him while searching for information on involuntary euthanasia. He told me that one of the biggest problems he faces in his job is the acts of renegade doctors and nurses that help people to die. Often against their will and long before they are actively dying.

I saw many people on hospice in that assisted living facility and I learned a few things. Most people have a misconception about hospice. We tend to thank of it as one large organization. That is not true. Each hospice program has it's own administration. There are good and bad in all of them. Hospice was oringinally established to ease the dying process in those in the last few weeks of life. Sense then it has been expanded and many people are on it sooner. That is where the problems start.

I saw two cases that show some of the things people need to know about hospice and how different they can be. One lady had COPD. If she needed anything all we had to do was call hospice. She was not in iminate danger of dying. Everything she needed was provided and a call to hospice was answered many times faster than the ones made to a doctor for those not on hospice. She had a skin tear that got infected and she was taken to the hospital and treated. Hospice provided for it. Then one day she got sick. Someone called an ambulance and she was taken to the hospital only to discover that she had pneumonia. She was treated and got over the pneumonia and released. While she was in the hospital hospice came and removed everything they had provided for her, hospital bed, wheel chair and oxygen among other things. We were told it was because she was taken to a hospital that her hospice did not associate with. The last I heard of her she was doing fine and had moved out of state to live with her daughter. Had the pneumonia not been treated when it was she would probably have died.

The other lady was nothing short of a living miracle. She had had her breast removed nearly thirty years ago because of breast cancer. She had suffered many accidents and illnesses. She had congestive heart failure and signed up for hospice. Not long before her heart problem was discovered she had suffered a severe back injury and been put on Morphine. She was never taken off of it. One day she decided that because she was no longer in pain that she would stop taking the morphine so she refused to take it. Hospice got very upset and tried to insist that she take it but still she refused. When severe withdrawal symptoms started they gave her very large doses of Ativan every four hours by hospice orders. I was off one day and when I returned I was told that she was actively dying and her body was shutting down. I saw and knew that the symptoms she was showing were the same things that I had seen with Johnny when he had recieved a very large dose of Ativan but I was allowed to say nothing. She was expected to die at any minute and we were told than under no circumstances could we call 911.

A few days later I went to her room and found her up and looking good. Her sister was with her. I asked what had helped her and she told me that she had refused the Ativan as well as the morphine. She also told me that she had felt like hospice had decided that she was supposed to die. Later she suffered a dislocated shoulder and went back to the hospital. When offered morphine she again refused it. When I left there she was back in her apartment and doing great. She was no longer in a wheel chair but used a walker. She was going to dinner and going out with her family. She was also working on a big art display of her deceased husband's work. He had been an artist. She was alive and well and taking NO morphine. That was 4 months after I had been told that she was actively dying.

So I have very mixed feelings about hospice. Yes they can be very good for people but like any other part of the system they have to be watched because often they have their own agenda just like doctors do.

[kimblanchard]

My mother was in Hospice care here in Florida and fortunately for us they were great. My mother was indeed in a great deal of pain from early on so she did require a lot of morphine and we knew she needed it.

Yes, there are good and bad Doctors, people, facilities , etc. in life and this the reason why my sister and I and our father NEVER NEVER LEFT MY MOTHER'S SIDE FOR A MOMENT WITH OUT ONE OF US THERE when she became ill!!!. We did our homework and educated ourselves as best we could and became my mother voice when she could not think or speak for herself. When she needed something we got it. If something didn't seem right we spoke up until we were heard. I went to EVERY doctor's appt. with notes and took more notes. We left no stone unturned. We were fortunate in that we all live in the same town so it was easier.

It is heartbreaking to know what some families have gone through. Yes, I do feel guilty about things but I know at the time we did our best and my mother knew it as well. We kept nothing from her and always communicated with her.

***If you can help it DON'T LEAVE ANY LOVED ONE UNATTENDED IN ANY PLACE IF THEY ARE ILL AND CAN'T HELP THEMSELVES!!!!!!

Kim

[Mary]

I feel compelled to relate that you can have the most vocal advocates and never leave your loved one unattended and not have a favorable outcome.

Much regards,

Mary

[Fay A.]

Mary,

You are absolutely correct. I've said this before. There is a HUGE difference between failure to treat and the treatment failing. We have to be able to distinguish between the two. But in between these two things lies What is done?, How it's done? Was it the right thing to do? Was it the best thing to do?

If you or your loved one is given the appropriate care and the best care for the problems that exist, then chances are they are NOT going to be upset with the medical providers. Upset with the outcome? Oh Yes. It's when that care falls below the expectations (of receiving the best and appropriate treatments for the condition) that feelings become hostile. And frankly, rightfully so.

If you do your very best for me, and your best is appropriate to the condition, then I'm going to be thankful to you, even if the treatment fails. I'll be crushed the treatment failed, but thankful that you did what you could.

[lilyjohn]

Amen Fay!

I will say too that you can be by their side 24/7 and sometimes not realize what is really going on. If you are the one and only person to care for your loved one you still have to use the bathroom, eat and sleep at least a few minutes at a time. Especially if you have already gone two nights without sleep.

I will add too that even having something not treated is not as bad as having something done that deliberately causes harm. Something like giving a medication that the patient is allergic to(in his IV) knowing it and after he has refused to take it.

Every case is different. It is always easy to say what you would do when you don't have to face the same situation.

Doctors are not God and sometimes they will try and fail. It is when they don't try or do things that cause harm just because a person has lung cancer and is considered terminal that I object to.

We have to understand that they are not God but so do they

[kimblanchard]

Mary,

You are right in that you may still not have a favorable outcome, we didn't because I lost my mother.

Kim

[Guest]

This is such a personal matter. Points to be taken from each side for sure.

Having experienced 4 cancer deaths in my immediate family in the last 3 years I can honestly say...It is different every time even perhaps with the same disease.

Every patient has a different tolerance to pain and discomfort. Some embrace death/transition and others fight at the end and cry for some relief. Is their pain really different or simply their response to it?

For those that have provided morphine for comfort or relief of those who displayed pain, no regrets. Only you were there and knew the patient intimately.

Also, Do more than just be there physically. Educate yourself on every possible outcome of every medication and every process that is applied. Be proactive not reactive and then you are driving the car and not sitting in it without say in the final destination.

My opinion only!

[Fay A.]

Dear Guest above me,

You've said it well....and I wish you had signed in as yourself. It would be a pleasure to 'know' you.

[gerbil runner]

I think what we all want is CHOICE for the PATIENT. The choice for more pain relief, the choice for less medication, the choice for treatment of complications even if the primary disease has no further options...

When you can't choose an outright cure, it's the least health professionals can do to allow full informed choice of everything else.

[KC]

I've been reading this thread but haven't responded yet because I don't quite know what I want to say. The first time I read Fay's post, I said to myself, way to go Fay. But immediately after I felt sick to my stomach because the one thing that has been haunting me about my father's death is if they put him into that unconcious state with the drugs because they felt they coudn't treat the cancer any longer and just left him there to die. Granted, my father was in a lot of pain from the bone mets in his back. The days leading up to him going into the hospital on March 14 were horrid. He was on one hand wishing he would just go into a coma and die and on the other hand, just wanted to find a pain killer that would work again. That is why he agreed to go to the hospital. To try and get the pain under control with either epidural or pain killer given intravenously. The IV pain killer worked for him, the epidural did not. Everything took a turn for the worse when the pain management doctor tried to give him methadone in pill form. My father was there because he couldn't take any pills any longer without vomiting. He had to wait 4 hours after the methadone pill to receivng the IV pain killer again and those 4 hours were filled with excruciating pain. My other biggest regret/fear is that I was not there the day the dr. supposedly came in to speak with my father about draining the fluid from his lungs. That was on Friday, according to the onc. who works in the hospital. He told me on the phone when he called to tell me my father had went into respiratory distress on Saturday night and he didn't think he would make it. He said my father refused the thorocentesis the day before, that he was comfortable and didn't want a needle in his chest. My brother told me that my father told him that they were going to drain the fluid, so I don't knwo what happened between the time he spoke to my brother and the time he went into respiratory distress. I never heard about the conversation before it was too late. I know I am babbling here, but my point is, I have much fear/regret that I wasn't there for my father when he needed me most (to make important decisions), although I was his advocate since he was diagnosed in Dec. 2001. I would ask my father questions while he was in he hospital about what the dr.'s had said when I wasn't there (they would usually come very early in the morning) and maybe it was that I was paralyzed with fear about what I was going to hear that I didn't call the onc. and speak to him myself. I feel so guilty about that now. I left my father on Saturday evening at around 7:00. The had just given him a blood transfusion for his hemoglobin and he tried to get up to go to the bathroom while the IV was plugged into his port and the plug fell out. He got scared and thought he was bleeding from his head. I told him it was just the tube fell out of the port. I had just finished ordering him something to eat and he seemed fine until all of that happened, except he had the oxygen mask on his face and couldn't breathe without it. The nurses all came in to fix the tube in his port and I guess my father was getting nervous so they gave him a shot of Ativan. The nurse told me that he asked for something earlier to calm him down and he had one earlier too. I cleaned the blood off of him, and he kept telling me not to worry about it, but I told him I didn't want that blood on him. Then he started falling asleep. He said something, but I didn't understand what it was and I asked him what he said and he said he said something but didn't remember what it was and that was it. He fell asleep. He was sleeping so soundly, well snoring, but he was out cold. I stayed for a couple more hours and then I left. I figured I would let him sleep and rest. He looked good when I left. I got the call 3 hours later to come back. The nurse told my mother that when he woke up from his sleep his said to her, "hey, I know you". (She was his nurse the night before). And then he was grabbing at the oxygen mask trying to rip it off his face and then I guess that is when he went into distress. The onc. told me on the phone he told him no ventilator and to just make him comfortable. I still don't know how much dilaudid or morphine they gave him to put him out cold but when we got there the dr. said the machine he was on was a bypass machine (it was measuring his oxygen level and heart rate). I thought a bypass machine was the same as a ventilator anyway, so I'm confused about that. Then my father's private onc.'s partner came in with the final report of the CT scan my dad had a couple of days earlier. This is another thing I don't know why we weren't given the results earlier. Should it have taken 3 days in the hospital for the results? I didn't think so. Again, I didn't call or push it because my father would get annoyed and just liked to let things be. The report showed growth in the lungs, the area of consolidation had grown and the liver tumor had more than doubled in size to 5.8 cm. The scans in November showed 50% shrinkage in the liver and shrinkage in the lungs too. I told the onc. my father always had that consolidation and how did they know if it was cancer growth or just inflammation. He said because the liver had grown they had to assume that the lung growth was cancerous also. He said that my father had tried 6different chemos, the best available, plus Iressa and that there wasn't much more he could do. He said that he saw a very tired man when he visiting my father earlier in the day, my father he said was sitting on the edge of his bed slumped over. He said he wasn't going to put him on a ventilator like I was asking, it wasn't my father's wish and why would I want to prolong this suffering. I really hated this man who I had never met before at this point. He wasn't very comforting to me, just to the point. Then he said, let me tell you something. I have been doing this for a very long time and I see some really mean, nasty, miserable people come into my office and they get their treatment and they walk out cured and then come along people like your father, good and kind and there is nothing that works for them, and, I know, it's just not fair and I question why that is. Maybe there is something better out there (I assume he meant heaven). Again, I'm rambling and I apologize, but this thread makes me think that they gave up on my father and treating him and just left him there to die, in a drugged up state. I couldn't bare to watch him like that and I knew he didn't want me to. They told us he wasn't going to make it through the night. My mother and I went home (my biggest regret yet). We expected to get a call, but the next morning he was still alive and still the same in the oxygen level. They were just waiting for the heart to give out, I guess. I don't know, maybe if my father was meant to pull through, things would have changed with his condition. He did have that mask on his face giving him oxygen. Maybe if he had his lungs drained it would have helped his breathing. Just Friday his regular onc. was telling him that he was still going to treat him and wanted to have him out of the hospital if not Saturday then right after the weekend. They were going to send him home with the pain pump and try and get rid of the remaining bone mets with radiation. I'm sorry, I don't know what I'm talking about, I just can't get this thought out of my head that they let my father lay there and die and I let him lay there and die too! Can anyone please help me understand? Was there anything more that we could have done?? Did the dr.'s give up on him when he went into respiratory distress because he was Stage IV lung cancer patient?? He was supposed to come home from the hospital and now he is gone and I feel like we all let him down when I tried so hard to entire time to save him. Has anyone ever had a 5.8 cm liver tumor and had it reduced. I was in such a state of shock at that point I don't even know what the report said in full. I know I need to get a copy of it, but I haven't yet. Why did my father tell my brother they were going to drain his lungs and then they didn't? Maybe the dr. came in earlier and told him he would explain the procedure later in the day or something and my father decided against it. He decided against it because he felt that he didn't need it. I don't know, again I apologize. I just know that the dr.'s, whatever they were telling me, was to cover themselves and I'll never know the truth, ever.