How do you decide to stop treatment?

[annalexandria]

Here's an article that was in our local paper a few weeks ago, about how the law is playing out since it passed here. I'm very grateful that I live in Washington.
http://seattletimes.com/html/health/201 ... ath12.html

[Terry]

Hello everyone, I can share some of our experience with Terry at the end. I'll start off after her last surgery in January. When mom and I went to her Dr. appointment for her scan results and found out it was in her neck, nose, lungs and liver, we all new that was it. The Dr. said she needed to start treatment for the nose asap or she would be miserable within months(this was in March). Mom went and had radiation on the neck then the nose that took her voice, swelled her face up like a balloon and made her sleep all the time. She did this radiation till the end of April when we found out that it wasn't helping much only shrinking the nose tumor. The cancer was now growing out of control in her lungs,liver,chest,neck and even in her abdomen and was even borderline growing into her brain. She went home the first week in May and started hospice and was horrible. Then suddenly for a few weeks she was doing good besides her voice still being out of commission and was even planning on doing a trial. The day before she was going to start this trial she became ill and ended back in the hospital, she was told she had around 2 weeks left because the tumor was pressing on her artery. The Dr. came in and told her she could still try this trial and see if it helps, I lost it, I couldn't handle seeing my mom suffer any longer. My mom looked at me and asked why I was crying, I told her how I felt. I'm the strong daughter so I think my mom new when I broke down like this, it was time to stop. So, mom stayed in the hospital a few more days, came home on Thursday and left us on Monday.

So, was all this treatment she was doing worth it? I don't think it did any good but help her nose tumor shrink so she could breath out of it better. The treatments that she had at the end did nothing but take the little time we had with her. I'm not saying she didn't need some of the treatments but some of them did nothing but cause her suffering during her last few months. Now if the treatment would have helped her and if she was still here, I'm sure I would be saying something different. I don't think anyone can tell someone to give up or should anyone give up because others want them to, I think it should be up to the person fighting. If my mom really wanted to do that trial she would have even if we were kicking and screaming. For my mom, I think she just needed to know it was ok stop.

[KarMel]

Hello everyone, I can share some of our experience with Terry at the end.

So, was all this treatment she was doing worth it? I don't think it did any good but help her nose tumor shrink so she could breath out of it better. The treatments that she had at the end did nothing but take the little time we had with her. I'm not saying she didn't need some of the treatments but some of them did nothing but cause her suffering during her last few months. Now if the treatment would have helped her and if she was still here, I'm sure I would be saying something different. I don't think anyone can tell someone to give up or should anyone give up because others want them to, I think it should be up to the person fighting. If my mom really wanted to do that trial she would have even if we were kicking and screaming. For my mom, I think she just needed to know it was ok stop.

Shana (?)...thanks for sharing your story. I still think of Terry...she was one of first people to welcome me, and send me a PM about some questions I had.
When I was 24, I had to go thru a similar experience with my mom. In June, she was told she was dying of kidney failure in two weeks, unless she got kidney stents. She decided to get them. Four months later, she was dying miserably, and said the stents were a huge mistake that she regretted. That has strongly impacted my thoughts about stopping treatment, and when I decide it is time, if I don't respond to treatment.

God bless you and family. You remain in my prayers.

[lydia123]

To Ashlee and all the frank responders to this topic. I thank you. Gaelen would be proud.

My husband is currently NED, and we are hoping that active disease is strictly part of our past now. However, we know the odds, and we think about it.

I found great comfort in this thread, strange as that sounds. Why? Because I am "watching" the bunch of your confront your futures with grace and dignity. It gives me faith that my husband and I could do the same if faced with a recurrence. You are also providing me with an incredible resource.

Anyway, since I will be an active lurker here on this thread as my husband and I continue with our own planning, I though I should announce my presence and remind you that / thank you for a thread that will help many non-participants.

Wishing everyone peace.

L

[Ashlee H.]

I freaked when I saw a response from Terry - she'd love it that her daughter is keeping her spirit alive on the board. I often wondered, because I would have asked if it were me - why they just couldn't cut out some of the nose tumor - not enough to disfigure her, but enough to make it easier for her to breath. Sure, it would have continued to grow back but then just go and cut more out. At this point, cure was off the table. Cutting a part of it out should have been easier than radiation. I'm sure there was a good reason they wouldn't do it, but I still wish she didn't have to deal with that tumor. I'm glad you guys posted photos of the nose tumor - it was real and not sugar coated - this is colon cancer - this is what it can do.

With so many losses again in the past few weeks, I started thinking about where these people were six months ago. So often we talk with each other in PM's, worried about a member in which things don't sound good. Because of our vast knowledge here, we can usually figure out when things are going to start getting bad. Will I realize when I am at that point? Will my cancer buddies sit me down and say - come on, the signs are here - you are coming to the end of your journey. Are we able to be that blunt with each other? I've experienced the unspoken conversation. We both knew the end was near, and although the words weren't exactly said, it was probably what was not said that let us know we both knew how things would end. No more talks about trial studies. More talks about being comfortable and making sure things are in order.

I just watched Sara Walker's Funeral. To see the photos of this young vibrant women in a few months go to a concentration type thinness just broke my heart. Although Sara's true beauty was inside, I hate that in the end cancer took away her physical beauty. My friend Jules10100 refused to see any friends during the last few months because of her drastic change in appearance. I understood how Jules felt because I feel the same way. I don't want people to remember me as sickly. Maybe I'll make some cancer paper bags for my head - have the googly eyes, a big smile, pig tails - at least it would make people laugh instead of trying to avoid eye contact so you don't see the fear and sadness in their eyes. Ok - I'm rambling - just having one of those nights when I wish I never hear those words...you have Stage IV cancer.

[WorriedWife]

Dear Ashlee,

Just want you to know, that since you posted your first msg here on your thread, I have been praying for you. Big HUG!!!

[Lara239]

Me too! Am praying for you !

[Ashlee H.]

While I always appreciate prayers, this is not the reason I started this thread. I wanted a safe place we Stage IV'ers can go to discuss the very ugly side of this disease without being judged for giving up. There is a thread started by Terry about requesting prayer - since Terry is gone, maybe you two could revitalize that thread for people who are requesting specific prayers. Pray that researchers find a cure. Pray that child don't have to deal with cancer. I'm good with my Lord and know he is with me every step of the way on the journey.
But for this thread I'd like to see it get back on topic about how we make that big decision. I'll see my ONC again this week. That usually brings up some more questions. I've tried to get information on Hospice, but for some reason it is very difficult to get people to chat with you about this - so am anxious to see what you guys are finding out. I know when I was in the hospital I asked about a "DNR" and they told me there are different kinds - one where it is totally hands off, another where they where do minimal things (i.e. give a shot if the heart stops, but no CPR), and then there was a 3rd one, but I don't remember the details. I do remember the nurse telling me how it is awful to see them try to bring someone back to life - said it was pretty violent and it's not unusual to have broken ribs. If my heart stops....just let me go. I even had a minister come by and see me, and he brought up the conversation and said sometimes you just have to say "stop" and God is ok with that.

[Bev G]

Hi fellow stage IV folks and their caregivers,

I'm really glad Ashlee started this thread, and have read with great interest all of your thoughts on the matter. I guess one of the "gifts" of this diagnosis (and I use the term with near endless ambivalence) is that we have the opportunity, and incentive, to think ahead, perhaps more than people who have not faced a diagnosis such as ours. Every time I go to the hospital, when I check in, they ask me if I have a "living will". YES. Do we have a copy of it? Well, no. (Do I even know where it is? Well, no) Every time I go, I think, wow, I really should give them a copy for my medical records, so they'll know what I want (nothing!) That pre-supposes that my living will will indeed make it to my medical record, which is supposing A LOT for my hospital--but of course, I should make an effort. Long, long before I had cancer, but when I was moonlighting in ICU, I wanted to get a tattoo on my chest "DO NOT COMPRESS! DO NOT SHOCK!".

Thank God, I am not acutely in the decision-making loop yet, but really, my decision has already been made, I guess. I have co-opted it from our dear Gaelen. If I have anything to do with it, I WILL NOT die with chemo in my veins, and when the treatment is worse than the disease, I will quit. One of my dearest friends wants to quit whenever she is on chemo (and I don't blame her for a millisecond) but she always feels so much better almost immediately when it's stopped, so, I keep encouraging her to do the next and the next round, and before she knows it (she says so, too), six are done. How long can she keep doing this? I don't know. She is strong, tough and courageous beyond words. I hope and pray she can keep doing it until during one of these wretched rounds, we will all wake up one morning to a thread entitled: THEY'VE FOUND A CURE!

That's my prayer for each of us, no matter where we are on the journey. Much love to each and every one of my stage IV comrades and family.

Bev

[Laurettas]

We are nearing that point in the journey where we may be making the decision to stop treatment. I have one concern that has popped up. Jake is on steroids and they make him somewhat depressed and very emotional. He has talked since being on them about thinking about ending treatment. Is this how he really feels or are the drugs controlling his thinking? How does on discern the difference?

[hannahw]

Steroids seem to impact people differently so it's probably hard to say whether/how much the steroids contribute to the thought process behind stopping treatment. Does he seem irrational when he says it? Or discouraged/depressed? Or is it one of those things where quality of life is starting to be impacted in a way that isn't worth it to him?

Sherwin Nuland has a great book called "How We Die." A lot of the book is devoted to the specifics of how different diseases take life, but he also spends a good amount of time on the more philosophical issues, such as why we seem culturally bound to allowing death to be the elephant in the room. Or why we're conditioned to relate treatment to hope and the consequences of failing to recognize when you've reached the point where stopping treatment is a better option than continuing. It's particularly powerful in that Dr. Nuland had a personal experience with his brother, colon cancer patient, in which he essentially ignored all that he had learned as a doctor because he he, the younger brother, didn't want to fail his brother, didn't want to take his hope away. Dr. Nuland advised his brother to continue treatment, something he would not have advised one of his patients. It really drives home how difficult it can be as a family member to let go and allow the patient to do what is in their heart. It also lends some insight into how there's a transition between hope for cure (or at least lasting remission) through interventional therapy and hope for peace and comfort near end of life. It's one of the best, most meaningful books I've ever read. It helped me reflect on my role in my Dad's care and how important it is for our family to talk openly about end of life and the hopes and fears related to it. It also helped me feel less angry at the doctors who have brought the subject of death into the discussion. As difficult as it is to hear, they aren't doing it to be mean or to take your hope away. Most docs you choose to engage patients in the topic of end of life care do it because they care, because they want to know what they patient values so they can provide better guidance near end of life and because they know it's a difficult topic that people need time to process. I think it's much easier to discuss it when things are going reasonably than it is to discuss it when it's at your doorstep.

[Laurettas]

Hannah, thank you for the great response. I know that the steroids are affecting his emotions a lot by the way he is behaving. His behavior is much different than it has been and it occurred a day after he began the steroids.

So, that makes it very difficult to know how much the drug is affecting what he is thinking. He has told various people one thing but then that can change when he is talking to the doctors. The docs tend to promote more treatment and Jake has told them he would like the opportunity to live longer. But then when talking with other family members he is more hesitant about doing things like this brain surgery.

I am just so uncertain that he is going to be capable of making a clear decision after hearing what the doctors have to say Tuesday because of the drugs.

[hannahw]

Honestly, I'm not sure I believe there is such a thing as a clear headed decision. There are just so many things that influence our perspective. For example, I've noticed that my Dad will occassionally break out some bravado in front of a couple of his doctors. My Dad is not a bravado kind of guy so it's weird to see him like that and it makes me wonder what he's thinking. Does he worry about disappointing the doctor? Or does he think that if he doesn't give them the rah-rah that they might think he's ready to quit and thus advise him as such?

I've noticed, at times when my Dad has been hospitalized in very bad condition, that docs will come in and be much more grim, not so much because the actual prognosis is grim but because my Dad is just totally crapped out. Docs who know is normal baseline are less likely to act this way than docs who don't know his baseline. I get the impression that some docs, especially if they don't have history to go on, can be quite influenced by what is right in front of them, even if it's not normal and is likely to be temporary once the immediate medical issue is brought under control. So I can understand a patient maybe exaggerating their enthusiasm for something in front of their doc.

And I'm sure, even though he knows that we'll support whatever decision he makes, that there's still a part of him that doesn't want to let us down. So I think there are times when he probably gives us the sunny side of things when really, he's feeling pretty gloomy. I take some comfort knowing that he has a few close friends that he can vent to without worrying that he might disappoint anyone. I just think it's natural for people to want to put the best possible face on things for the benefit of their loved ones. I know I do this for my family. I don't want them getting dragged down by whatever my drama might be that day.

Plus, it seems completely normal that any patient, especially a patient who might nearing end of life, would be on an emotional rollercoaster where one day they feel like they're ready to getting treatment and other days they're ready to stop. What's real? My guess is both. Whatever the feeling of the moment, it's genuine. That's why it's a good idea to talk about things over time rather than making an abrupt decision. Upthread someone linked to an article about the death with dignity law here in Washington State. The article talks about a well educated, financially sound mad with ALS. He sought a prescription for medication that would end his life. He filled the prescription but he hasn't used it. He just wants to have it available in the event he wants to use it. His wife doesn't want the medication in the house, specifically because she doesn't want a hasty decision to be made. The law itself requires that a patient make more than one request over a period of several weeks. There is a great deal of emphasis on ensuring that people don't act impulsively.

And maybe part of the reason a patient starts talking about being ready to stop treatment is because they want to test the waters a little bit, see how it feels, see whether their family is going to be ok with it. It's a big, stressful topic and most of us have no previous experience with it and nothing on which to model our behavior. So, being able to ease into the topic is probably a good thing.

Anyway, I think as caregivers it's tough because these decisions impact us, but they aren't really our decisions to make. We kind of have to learn how to be flexible and patient, how to be ok with the gray area that is involved in making end of life decisions.

[Laurettas]

I think you are right, Hannah. I think there may be a testing of the waters to see the reaction from others. Jake has mentioned to both our daughter and me that sometimes he would like to be finished with it all. He said a few days ago that sometimes he would like permission to stop treatments. I don't know for sure, however, who he feels he needs permission from since he has been the one making the decisions from the beginning. I was against chemo in the beginning since I had seen what it did to him years ago when he had Hodgkin's disease.

Our main concern is that he could go through surgery and radiation for his brain tumor, causing who knows what kind of side effects and lengthy recovery to have the cancer in the rest of his body continue to spread and kill him anyhow. And how does one know what might happen? Very difficult to try to discern.

[ronniesister]

dear ashley and all,
i am was the caregiver for my brother, ronnie who passed away july 14, 2012.
ashley, i always sign on and check up on you behind the scenes...
you were one of the first people who wrote to me and helped me sort things out when my brother was pushing me away in the beginning. ronnie was similar to annalexandria's sister. we didn't discuss that he was dying until the day he did.
he started chemo right after dx after surgery of stage IV signet ring cell cc. he never got a positive report. nothing worked. sometimes the oncologist said things are staying at bay more than he expected which gave us a glimmer of hope...false hope. i don't know how he did it consecutively except that he loved life.
the last about 3 days, he started leaving this world. no tv, no talking, eyes always open...

my regret: i sat looking at him, sending him an "i love you" look and a look of comfort hopefully. then, i left the room. i started to hear what someone told me they experienced with their mom; the death rattle. i called the hospice nurse (she had come that evening around 6 pm the night before he died...basically 24 hours) out and asked her if that was what that noise was. she said yes, and i went to my bedroom upset to lay down. all of a sudden i had no energy. not one drop. about 10 minutes later, my husband and the nurse woke me and told me ronnie had just passed. so, my regret is not staying. i know...i was there...i had my goodbye...he knew...but i can't help it... i wish i asked him to come see me, a sign. i wish i held him.

so, ashley, he did the chemo...sick as a dog mostly without it helping except with pain and at times from spreading and growing...but it was very obvious when he should stop. it wasn't even controlling the growth anymore, he was more sick than better. he didn't make the decision to stop...the oncologist did with discussing it telling him that he was going off of it to see if he could build some strength up.
Unfortunately, he got weaker and weaker fast. everything snowballed. nothing was a burden, nothing was enough...i cannot get his last minutes with me out of my head. i had told him it was ok and he would be ok...and i pray he is.