When a person “accepts” metastatic cancer and declines intervention

[Ginevra]

I am not completely certain this is the case with someone close to me, but I have a strong suspicion that it is. I’m trying to...I don’t know, maybe find the right headspace, for if this is what the person soon tells me is the plan. The person is profoundly religious and has many other health challenges. I think this person just wants to get to heaven. 

There is a part of me that does believe it is a person’s right to choose this (I am one who would support physician-assisted suicide in certain cases), but also...uggh. I don’t know how I can be okay with someone unwilling to do battle. I also don’t know what it would be like to be this person and tell people this is it, which is why I think the person is keeping things on the DL and even lying to some extent about what the situation is. (I don’t know for 100% certain that the person is lying and obscuring the prognosis, but I have very good reason to believe it.) 

Anyone have any words of wisdom? 

Edited June 24, 2019 by Quill
Removed a term that might offend

[ktgrok]

Well, often when people do this there isn't any real treatment, not that will cure them. Could that be the case here? I mean, if there is no real cure, then it really isn't suicide to decline treatment. 

[Garga]

Ugh, Quill.  From other things you’ve posted, I think I know who it is and if it’s that person, then this does affect you very much.  And even though they’re not a young person, I don’t think they’re old enough to just give up without any fight at all.  They still ought to have years left in them.

I’m pretty sure you’ve read Being Mortal, right?  You might want to revisit that book or read it for the first time to remind you about why people make a choice to forgo medical treatment.  It’s about when people decide not to use medical interventions to get better if they have a life-threatening illness.  Of course, most of the examples in the book are about people whose quality of life will be much worse after treatment, and so it’s more merciful to just....go, rather than live in misery for the next X years.  But it’s a different thing if the person just wants life to be over because of the religious side of it and they *could* be treated and still have a good quality of life.  In a way that’s coming across as being selfish to everyone who knows this person.  They have the ability to be treated and still live a good life, but are choosing to die instead so they can get to heaven faster. 

I have no words of wisdom, and I hate it that you’re dealing with this.  My mother is the sort who would possibly rather die than deal with doctors.  She has often talked about how she’s just treading water until she can get to heaven.  My father got cancer this year and is being treated.  My mom said to him, ‘You love life so much—why did you get the cancer and not me?” And he said, “Because if you got cancer you’d give up and die, but I will fight it and live.” They were speaking as if there was a plan and God had to choose one of them to give cancer to, but I don’t believe that happens. But the sentiment is there.  Some people will fight and some will give up.

Will the treatments make this person’s quality of life just awful?

 

ETA:  Just read the responses above mine—those are very good points.  If the quality of life becomes years of misery, then this choice can make sense, and the person can have peace in it if they have hope of a better afterlife.

Edited June 24, 2019 by Garga

[Jean in Newcastle]

Declining treatment doesn't mean declining comfort (palliative) care so it doesn't have to be agonizing.  ((Hugs))

[May]

My SIL declined treatment after her cancer returned a second time. Her son, a doctor, tried to convince her otherwise but she said “no.” It was her choice and I respected that, along with most of her siblings🌺My DH, her baby brother, had the honor of conducting the funeral service🙏🏻 She was only 66😢

[Guest]

9 minutes ago, Æthelthryth the Texan said:

I know this has to be a sensitive place for you with your recent treatment.......but I worked in oncology and genomics for many many years. And I have seen advanced stage breast cancer treatment very often lead to quite more torment, pain, and suffering for the same outcome at the end, and that's death. Except for you (not youyou, but them) didn't get to enjoy the last bit because you were in the hospital for a last ditch effort the entire time. 

Everyone dies eventually and some would rather do it on their terms, so to speak, rather than wrung out, drugged out, and in a hospital anyway. So I don't think someone making that decision to not treat is nuts at all- regardless of what stage. Physicians are really great at some things- they are not always great at communicating the downsides and risks of cancer treatment, and often the treatment is more brutal than the disease. That is something that has gotten really obfuscated in the US and it bothers me on a really deep level. And sometimes the disabilities caused by the treatment mean a not wonderful life left to suffer through after treatment. So I think in this case, you have to let it go and trust them to be an adult over their life. Be supportive and make your peace if you can., but honestly, since you're asking our opinion, my opinion is you need to stay out of it. It's their battle to chose or walk away from, and there is no cancer treatment on this earth that is not without sizable risks and adverse events, so it's not an equitable thing to suicide. To some people, it's the graceful decision that allows them some sort of control instead of handing it over to a bunch of doctors. Just my 2 cents, being intimately involved in the field, though not on the same level as you as a patient. 

Thank you for your whole post. It does help me a lot. And yes, I do think it’s touchy for me because of what I just went through. 

One thing that bothers me is I don’t think the ill person has been direct with medical personel. Appointments get cancelled and no rescheduled, and then this person expresses worry that the doctor is going to chastize them. I feel like, if the choice is not to do battle, then maybe this person should be discussing this POV with medical personel instead of just behaving sort of unreliably. I’m also sure there is emotional support available for this decision, but not if they don’t actually make it known. 

[Guest]

@Garga I imagine your guess is correct. 

I have Being Mortal on my to-read list but haven’t read it. Maybe I need to move it up in my list. 

[Mom0012]

There is no cure for metastasized breast cancer, only treatment that may delay the inevitable, My mom passed away last fall, almost 2 years after her diagnosis. The average time period I’ve seen online from her type of diagnosis until the end is about a year. My mom’s first year of treatment was well worth it. Her quality of life was very high. The second year was filled with suffering and hope that things would improve, but they never did. I would have wished for her to stop treatment and move to comfort care many months before she did. I think she could have wound up with a little shorter amount of time, but it would have been better time. She fought like hell to the very end, as was her right. But no one ever explained the pros and cons of continuing care to her and I think they should have.

[Garga]

4 minutes ago, Quill said:

@Garga I imagine your guess is correct. 

I have Being Mortal on my to-read list but haven’t read it. Maybe I need to move it up in my list. 

I would read it asap--right away, like walk away from the computer and start reading.  It deals with this exact issue.  It will help you get the right headspace to understand this decision. The book was pretty eye opening.

Edited June 24, 2019 by Garga

[Guest]

23 minutes ago, Ktgrok said:

Well, often when people do this there isn't any real treatment, not that will cure them. Could that be the case here? I mean, if there is no real cure, then it really isn't suicide to decline treatment. 

I think there are surgeries that could be done which would slow the progression, but the person does not want to go through any more surgeries. There are medications being used to help curb advancement too, but the person refuses many types of cancer treatment due to side effects. 

[Pawz4me]

DH has metastatic cancer, so this is close to me.

There is no cure for any cancer that has metastasized. Doctors may refer to remission, or getting to "NVED" (no visible evidence of disease), but at this point the word "cure" is not one that is used by medical professionals in relation to stage IV cancer.

I strongly dislike the terms "gave up" or "giving up." Ugh. it sounds like the person is just passively fading away. Sure, some choose never to pursue treatment. But some stop after realizing that staying in treatment to keep the disease under control is too costly in terms of quality of life. Not only from side effects of medication, but the never ending doctor appointments, scans, surgeries, blood work, managing prescriptions and insurance, and on and on.

And just about everyone, unfortunately, has to consider finances. Even with good insurance cancer (and many other chronic illnesses) is incredibly expensive. A very high percentage of people with stage IV cancer declare bankruptcy within a couple of years. There are a few people on the cancer board I belong to (same type of cancer that DH has) who have made the decision to stop treatment, or to never pursue treatment, because of the toll it takes on the family.

Long way of saying -- there is much to consider, and unless one has walked in the shoes I wouldn't judge.  Unless it's you or someone you are very, very close to then it's not up to you to decide.

[Catwoman]

1 minute ago, Pawz4me said:

DH has metastatic cancer, so this is close to me.

There is no cure for any cancer that has metastasized. Doctors may refer to remission, or getting to "NVED" (no visible evidence of disease), but at this point the word "cure" is not one that is used by medical professionals in relation to stage IV cancer.

I strongly dislike the terms "gave up" or "giving up." Ugh. it sounds like the person is just passively fading away. Sure, some choose never to pursue treatment. But some stop after realizing that staying in treatment to keep the disease under control is too costly in terms of quality of life. Not only from side effects of medication, but the never ending doctor appointments, scans, surgeries, blood work, managing prescriptions and insurance, and on and on.

And just about everyone, unfortunately, has to consider finances. Even with good insurance cancer (and many other chronic illnesses) is incredibly expensive. A very high percentage of people with stage IV cancer declare bankruptcy within a couple of years. There are a few people on the cancer board I belong to (same type of cancer that DH has) who have made the decision to stop treatment, or to never pursue treatment, because of the toll it takes on the family.

Long way of saying -- there is much to consider, and unless one has walked in the shoes I wouldn't judge.  Unless it's you or someone you are very, very close to then it's not up to you to decide.

 

How is your dh doing, Pawz? I think of you guys often and wonder how he is, but I hate to bring it up here because I always think that this forum is probably a good escape from reality for you, and I don’t want to make you uncomfortable. 

[Laura Corin]

My father decided to stop treatment after the third (experimental) cancer treatment line stopped working.  He decided to spend his last months doing what he wanted to do - reading, walking a bit, eating what good food he could, enjoying a glass of wine.  He didn't want to spend his last months in and out of hospital, grasping at straws. He hadn't given up, he had made a choice about how he wanted to spend his life.

I second reading Being Mortal as soon as you can.

[prairiewindmomma]

42 minutes ago, Æthelthryth the Texan said:

I know this has to be a sensitive place for you with your recent treatment.......but I worked in oncology and genomics for many many years. And I have seen advanced stage breast cancer treatment very often lead to quite more torment, pain, and suffering for the same outcome at the end, and that's death. Except for you (not youyou, but them) didn't get to enjoy the last bit because you were in the hospital for a last ditch effort the entire time. 

Everyone dies eventually and some would rather do it on their terms, so to speak, rather than wrung out, drugged out, and in a hospital anyway. So I don't think someone making that decision to not treat is nuts at all- regardless of what stage. Physicians are really great at some things- they are not always great at communicating the downsides and risks of cancer treatment, and often the treatment is more brutal than the disease. That is something that has gotten really obfuscated in the US and it bothers me on a really deep level. And sometimes the disabilities caused by the treatment mean a not wonderful life left to suffer through after treatment. So I think in this case, you have to let it go and trust them to be an adult over their life. Be supportive and make your peace if you can., but honestly, since you're asking our opinion, my opinion is you need to stay out of it. It's their battle to chose or walk away from, and there is no cancer treatment on this earth that is not without sizable risks and adverse events, so it's not an equitable thing to suicide. It's not like there's a magic treatment that ensures all will be okay and they're simply choosing not to do it. To some people, it's the graceful decision that allows them some sort of control instead of handing it over to a bunch of doctors. Just my 2 cents, being intimately involved in the field, though not on the same level as you as a patient. 

This. 

And I’ll add that when a family member hid their terminal diagnosis from the family for a period of months, a lot of people were angry with them...but the real name of that anger was grief. 

[Farrar]

I don't know what the specific situation is... But when the chances are very slim for recovery, most people will live a longer, happier, dramatically more comfortable life by not pursuing more attempts to extend their lives. That's the irony - you'll live longer if you "give up." Obviously not true for all situations - early stage and good prognosis cancers need to be treated and I get angry at the people who think that chemo is a poison they refuse to put in their bodies. But my step-father had a late stage cancer that was definitely not able to be stopped and was on hospice care for well over a year, in part because he stopped seeking anything but palliative care. And he had good days until near the end. I'm so, so grateful that he lived like that and not by pushing for any treatment, because then my kids wouldn't have as many good memories of him.

Edited June 24, 2019 by Farrar

[fairfarmhand]

15 minutes ago, Laura Corin said:

My father decided to stop treatment after the third (experimental) cancer treatment line stopped working.  He decided to spend his last months doing what he wanted to do - reading, walking a bit, eating what good food he could, enjoying a glass of wine.  He didn't want to spend his last months in and out of hospital, grasping at straws. He hadn't given up, he had made a choice about how he wanted to spend his life.

I second reading Being Mortal as soon as you can.

This, I think is what I think (can't say till I've been there)  I would decide if I had tried a few treatments that failed. 

Finances plays a big part.

Also, for some people, they just can't bear the thought of living in a bed while their children clean them up because they're incontinent. They can't stand the thought of missing all the Christmas stuff because they just can't get up. they can't bear the idea that their whole family, everyone they love, will be tortured watching them die slowly....slowly. While some cancer deaths are long and drawn out, some people get to the place where they just want the whole thing over as quickly as possible.

@Quill, maybe you need to broach the topic the next time an appointment gets blown off if you have that kind of relationship "I see that appointment was missed. Is there something you're not telling me? Because I love you and I will support whatever decision you make. I just think it would be helpful for me to process that decision if we can talk about it."

[Laura Corin]

4 minutes ago, fairfarmhand said:

Finances plays a big part.

FWIW, this wasn't the case with my father.  His treatment didn't cost him anything beyond the taxes he had paid previously.

[fairfarmhand]

2 minutes ago, Laura Corin said:

FWIW, this wasn't the case with my father.  His treatment didn't cost him anything beyond the taxes he had paid previously.

Sorriy if I implied that. Was just using your post as a springboard for my thoughts.

[Murphy101]

1 hour ago, Ktgrok said:

Well, often when people do this there isn't any real treatment, not that will cure them. Could that be the case here? I mean, if there is no real cure, then it really isn't suicide to decline treatment. 

 

This.  It is not suicide to accept what we cannot change, especially when the treatment can be more pain than mitigation of the end.  I will never be for assisted suicide.

And yes, finances play a huge role too.  We can talk about valuing people all we want, but it doesn't seem true when it comes to medical care.

Edited June 24, 2019 by Murphy101

[Farrar]

Honestly, I think more people should make this decision. Not people with cancers with good survival rates or even mediocre survival rates. Yes, treatment could be hard, but it's there. But if you're facing a cancer with a five year survival rate that's basically statistically insignificant... it should be considered and without judgment. I wish doctors would be clearer too. Like, if the survival rate is nil, just tell people. Counselors should help patients frame these options. What is most important to you and which treatment option is more likely to get it for you.

People who are scared of treatment or convinced that essential oils are better or something... that's a whole other issue though.

[Bambam]

My dad, who had been through chemo once (maybe twice, but I was too young to remember the first time), declared that he would not do chemo nor radiation again if they found cancer again. He said it would not be worth it to him to deal with all the unpleasant side effects as it was horrible for him. About 10 years later they found cancer again. Treatment options had improved, and he did elect to do a little radiation (much more highly targeted by that time) but that was advised by his doctors due to the placement of the tumors. But he just didn't want to go through all that again. He wanted to enjoy the little time he had left without spending his time going to/from appointments, getting sick, being put in the hospital for various side effects, getting out, rinse/repeat. The treatment would not have been a cure but at most just a hopeful lengthening of life. 

[Guest]

12 minutes ago, Laura Corin said:

FWIW, this wasn't the case with my father.  His treatment didn't cost him anything beyond the taxes he had paid previously.

Living in a place where health care makes sense. Jealous! 

[Murphy101]

I don't think it is "giving up" to acknowledge that the limits of current medical/financial options for finding healing as been reached and that energy is better spent loving than fighting.

Some people want to "go down fighting" either out of fear or obligation or hope or just because that's their personality.

But I hate the entire "fighting" mentality wrt illnesses of any kind.

[Guest]

1 minute ago, Farrar said:

Honestly, I think more people should make this decision. Not people with cancers with good survival rates or even mediocre survival rates. Yes, treatment could be hard, but it's there. But if you're facing a cancer with a five year survival rate that's basically statistically insignificant... it should be considered and without judgment. I wish doctors would be clearer too. Like, if the survival rate is nil, just tell people. Counselors should help patients frame these options. What is most important to you and which treatment option is more likely to get it for you.

People who are scared of treatment or convinced that essential oils are better or something... that's a whole other issue though.

Yeah, thankfully, it is not this, although there may be some idea that God may just miraculously heal them. I don’t think that’s really what’s at play, though, in this case. 

[Murphy101]

3 minutes ago, Farrar said:

Honestly, I think more people should make this decision. Not people with cancers with good survival rates or even mediocre survival rates. Yes, treatment could be hard, but it's there. But if you're facing a cancer with a five year survival rate that's basically statistically insignificant... it should be considered and without judgment. I wish doctors would be clearer too. Like, if the survival rate is nil, just tell people. Counselors should help patients frame these options. What is most important to you and which treatment option is more likely to get it for you.

 

I agree.  With the proviso that if the chances are next to nil and they still want to try it, I think they should have that chance most of the time. Some people really can't find peace unless they feel they did all they could.  A lot of advances in treatments have come from people taking those nearly nil options.  It may not have saved them, but it gave research that benefitted others.  

Transparency would do wonders for outcomes either way.

 

[Guest]

2 minutes ago, Murphy101 said:

I don't think it is "giving up" to acknowledge that the limits of current medical/financial options for finding healing as been reached and that energy is better spent loving than fighting.

Some people want to "go down fighting" either out of fear or obligation or hope or just because that's their personality.

But I hate the entire "fighting" mentality wrt illnesses of any kind.

Really? I found that framing very helpful in my breast cancer treatment. Maybe because it was a fight I had good odds of winning, at least for now. 

What I didn’t particularly like with respect to my cancer treatment was “hope.” I’m sure it’s comforting to some but I rejected “hope” language. Hope sounds so passive; I liked “strength.” Fighting language is active instead of passive. I liked it. 

[gardenmom5]

there's a point, when all treatment does it prolong the inevitable - and it's a physically very hard thing with mediocre (at best) quality of life.  and often, a lot of pain.

sometimes, the kinder and more compassionate thing is to give palliative care and make them comfortable - not subject them to radioactive isotopes.

[Katy]

I had a friend my age who got lung cancer. Never a smoker. Stage IV at diagnosis, an aggressive strain. He decided to fight it with everything he had.  I read the literature on the treatment he chose.  It directly killed 3/10 people involved. Of the remaining 7, it lengthened their life by an average of 2 months.  2 months of agony.  He died earlier than they expected for no treatment anyway. If I was diagnosed with Stage IV I don't know if I could do the same, or if I would rather choose palliative care and spend the time I had left preparing presents and letters for the next 25 years for my children.  I would probably fight, for their sake, but I'm not sure I would if they were over 30.

 

I would probably ask them to just tell the doctor they wanted to give up and switch to hospice care.  I guarantee you it wouldn't be the first time.

[Farrar]

I think the "fight" framing is useful for people who are in a situation facing an illness that is reasonably able to be defeated. For people who are "battling" a foe that either can never be defeated (such as a mental illness or a chronic condition) or a disease that is so far along that they'll almost certainly not recover, my understanding is that it can feel very disheartening. It's one thing to figuratively face off against an enemy you can take down and another to be called upon to battle a figurative dragon day after day for the rest of your life, especially if you know you're likely to lose anyway.

Edited June 24, 2019 by Farrar

[Murphy101]

9 minutes ago, Quill said:

Really? I found that framing very helpful in my breast cancer treatment. Maybe because it was a fight I had good odds of winning, at least for now. 

What I didn’t particularly like with respect to my cancer treatment was “hope.” I’m sure it’s comforting to some but I rejected “hope” language. Hope sounds so passive; I liked “strength.” Fighting language is active instead of passive. I liked it. 

 

If it works for you, than that's all that matters for you.

But yes, LOTS of people do not like and even get angry about the "fight" rhetoric wrt to illnesses.

To some people, it places blame on the person who is ill.  Got problems with type 1 diabetes? Well it must be because they just aren't fighting it good enough.  Die of cancer - must have lost the battle. But none of that is true.  It's a language we don't use for other acts of nature beyond our control.  No one says they lost their battle with the tornado or snake bite or the flu.

Just like many people don't like the walk for cure nonsense.  There's no cure ever coming from those walks.  The amount that goes to actual research or providing actual medical care is pennies.

If others do find comfort in those things, then I'm certainly happy for them.  But it is not universal by any means.

[gardenmom5]

30 minutes ago, Farrar said:

Honestly, I think more people should make this decision. Not people with cancers with good survival rates or even mediocre survival rates. Yes, treatment could be hard, but it's there. But if you're facing a cancer with a five year survival rate that's basically statistically insignificant... it should be considered and without judgment. I wish doctors would be clearer too. Like, if the survival rate is nil, just tell people. Counselors should help patients frame these options. What is most important to you and which treatment option is more likely to get it for you.

People who are scared of treatment or convinced that essential oils are better or something... that's a whole other issue though.

my mother died of other causes - but it was very clear things were very bad.  the dr used "hope" language.  let's be patient language.  lets see how she is in a few days... (she wasn't going to recover. if it wasn't for the machines keeping her alive, she would have been dead sooner.)  - the nurses, were more realistic and knew there was no hope. (incl. one I've known for 35+ years who has been in ICU the whole time. she took one look at my mother and said "I am so sorry.")

some of it may be because they're taught medical school to "not give up", or with families who want them to "try everything" because they don't want to live with the guilt of "not trying".   I really think a definite part of it is a way to avoid dealing with a family who doesn't want to face reality their loved one is going to die, and attempting to give them time to "adjust" to reality.  (my sister was one of those. denial is not a river in egypt.)  a paramedic nephew stepped in and said "treat her with the respect she deserves, and turn off the life support. now." we had to *bypass* that hospital dr. in order to do so.

[SKL]

I would have different feelings depending on whether this person has relatively young children or others very much depending on them.

I tend to accept that people want to die on their own terms if they can.  At some point our work on this earth is done and honestly, it is better if we can feel ready to let go when it comes to that point.  I remember my grandma told my dad "I'm ready" and she was gone in the next month or so (died sleeping in bed at home, after a fun day of shopping).  I would like to go that way, not screaming in the hospital like my other grandma did.

I don't mean to belittle the struggle here.  But I would be inclined to accept the acceptance of a person who's lived a full life.

[Farrar]

1 minute ago, gardenmom5 said:

my mother died of other causes - but it was very clear things were very bad.  the dr used "hope" language.  let's be patient language.  lets see how she is in a few days... (she wasn't going to recover. if it wasn't for the machines keeping her alive, she would have been dead sooner.)  - the nurses, were more realistic and knew there was no hope. (incl. one I've known for 35+ years who has been in ICU the whole time. she took one look at my mother and said "I am so sorry.")

some of it may be because they're taught medical school to "not give up", or with families who want them to "try everything" because they don't want to live with the guilt of "not trying".   I really think a definite part of it is a way to avoid dealing with a family who doesn't want to face reality their loved one is going to die, and attempting to give them time to "adjust" to reality.  (my sister was one of those. denial is not a river in egypt.)  a paramedic nephew stepped in and said "treat her with the respect she deserves, and turn off the life support. now." we had to *bypass* that hospital dr. in order to do so.

Yes. I hate this. My father died without doing any death planning because he and his wife seized onto the idea that he was going to recover. When I was there, as he was dying, she was actively trying to get the doctor to tell me that he had such a great chance of recovering. Seeing him there, seeing me being like, okay, but, can we be honest, the doctor - at that point - refused to say that. She was very frustrated by it. And I think that's because he had actively misled them before. And it was only when he was on death's doorstep that he could bring himself to be at all honest. But what good did that do us? My father was too far gone to spend quality time with us, too far gone to tell us things like what he'd like at his funeral... just... too far gone. If he could have had a real conversation and said to them look, your odds aren't great, here's why you should pursue treatment, but here's why you need to go in with your eyes open... that would have been so much better than the "you can beat this!" line he sold them.

[cave canem]

47 minutes ago, Farrar said:

 if you're facing a cancer with a five year survival rate that's basically statistically insignificant...

My friend, a surgeon, just passed 12 years after receiving a cancer diagnosis with a 5% five-year survival (or was it 3-year?) rate.  The last few years were hard but really only the last year was really hard, so he stopped treatment and was gone very quickly. 

A relative died young of a cancer with a similar survival rate.  She fought hard but was gone within a year. 

Really hard to know what to do, but everyone hopes to be in the 5%.

[gardenmom5]

5 minutes ago, Farrar said:

Yes. I hate this. My father died without doing any death planning because he and his wife seized onto the idea that he was going to recover. When I was there, as he was dying, she was actively trying to get the doctor to tell me that he had such a great chance of recovering. Seeing him there, seeing me being like, okay, but, can we be honest, the doctor - at that point - refused to say that. She was very frustrated by it. And I think that's because he had actively misled them before. And it was only when he was on death's doorstep that he could bring himself to be at all honest. But what good did that do us? My father was too far gone to spend quality time with us, too far gone to tell us things like what he'd like at his funeral... just... too far gone. If he could have had a real conversation and said to them look, your odds aren't great, here's why you should pursue treatment, but here's why you need to go in with your eyes open... that would have been so much better than the "you can beat this!" line he sold them.

my sister was the one who bought into the "hope". it did her no favors, and made her grief more difficult.  I'm actually pretty miffed with that dr, ,because he was being dishonest.  we called and said 'we're turning off her life support".  she refused to come.  then she was mad because we didn't call and tell her she'd died... um, what did you think was going to happen when we turned off the life support?  

[Farrar]

3 minutes ago, cave canem said:

My friend, a surgeon, just passed 12 years after receiving a cancer diagnosis with a 5% five-year survival (or was it 3-year?) rate.  The last few years were hard but really only the last year was really hard, so he stopped treatment and was gone very quickly. 

A relative died young of a cancer with a similar survival rate.  She fought hard but was gone within a year. 

Really hard to know what to do, but everyone hopes to be in the 5%.

I agree with what Murphy said about about how if you want to fight, then you should. Like, really. I truly believe that. I think everyone wants to be in that group... but at what cost? If you understand the costs, then I think some people will want to fight to live long but others will want to fight to live well, which is a very different goal. Like, it's absolutely true that patients who go on hospice early live much longer on average.

[sassenach]

My FIL has openly and repeatedly stated that he will not do chemo if he's ever diagnosed with cancer. Good thing that the one cancer he has had was contained in his kidney and treated by removing the kidney with no other treatment. He's in his late 70's and I'm happy to support him, though I think dh would have a hard time.

Edited June 24, 2019 by sassenach

[Pawz4me]

1 hour ago, Catwoman said:

 

How is your dh doing, Pawz? I think of you guys often and wonder how he is, but I hate to bring it up here because I always think that this forum is probably a good escape from reality for you, and I don’t want to make you uncomfortable. 

He's coming up on his two-year cancerversary soon, and he's holding his own. We can't complain. Thank you for thinking of us! I do kinda sorta like to keep this my happy place, but I don't mind talking about it.

 

1 hour ago, Farrar said:

Honestly, I think more people should make this decision. Not people with cancers with good survival rates or even mediocre survival rates. Yes, treatment could be hard, but it's there. But if you're facing a cancer with a five year survival rate that's basically statistically insignificant... it should be considered and without judgment. I wish doctors would be clearer too. Like, if the survival rate is nil, just tell people. Counselors should help patients frame these options. What is most important to you and which treatment option is more likely to get it for you.

People who are scared of treatment or convinced that essential oils are better or something... that's a whole other issue though.

Lots of people don't want to know. They just don't. And shouldn't they have that right? Most good oncologists will either ask outright whether the patient wants to know or not, or (I think) they kind of feel there way around and try to figure it out. And I think to some extent we put too much on doctors. They don't have crystal balls. And cancer therapies have really exploded in the past few years. Immunotherapy and better forms of radiation (which aren't always curative, but can control) have been game changers in lots of ways, and they've changed things so fast that it's hard for statistics to keep up. Keep in mind that five year survival rates are always lagging behind new treatments. Immunotherapy in particular is still so new that the results aren't well reported yet. For some things right now the oncologist don't have good data/statistics to go on. So how could they advise a patient?

 

1 hour ago, Murphy101 said:

 

But I hate the entire "fighting" mentality wrt illnesses of any kind.

I agree. I don't like it at all. It implies that if a person loses the battle he or she didn't fight hard enough. But some cancer patients do like it and relate to it, and I say everyone is entitled to use the language they prefer. I'd be careful of using the fighting/battle terminology unless you know how the patient feels about it, though. Some are really offended by it.

[Ausmumof3]

I watched my mum go from a reasonable healthy person with occasional pain and still some quality of life after surgery to remove cancer.  The doctor initially told her she had 78pc chance of survival - after the surgery they admitted for the particular type and location she had only 48pc.  She regretted the surgery and wished she’d taken the last few months to do an overseas trip she always wanted to do instead of pursuing treatment.  

Cancer treatments are so nasty sometimes I really don’t blame anyone for choosing not to use them.  It’s not really different to having a do not resuscitate order or something.

[dirty ethel rackham]

1 hour ago, Farrar said:

Yes. I hate this. My father died without doing any death planning because he and his wife seized onto the idea that he was going to recover. When I was there, as he was dying, she was actively trying to get the doctor to tell me that he had such a great chance of recovering. Seeing him there, seeing me being like, okay, but, can we be honest, the doctor - at that point - refused to say that. She was very frustrated by it. And I think that's because he had actively misled them before. And it was only when he was on death's doorstep that he could bring himself to be at all honest. But what good did that do us? My father was too far gone to spend quality time with us, too far gone to tell us things like what he'd like at his funeral... just... too far gone. If he could have had a real conversation and said to them look, your odds aren't great, here's why you should pursue treatment, but here's why you need to go in with your eyes open... that would have been so much better than the "you can beat this!" line he sold them.

This was with my mother.  It wasn't cancer, but a failing heart.  Nobody would say that the treatments were likely not going to work.  I think my mom had a better idea than anyone that her time was short.  It was my mom's friend, a former nurse, who called me up after visiting my mom who told me that my mom was dying and didn't have much time.  The docs were still doing invasive tests and experimenting with drug regimens.  I finally became a huge pest and cornered the cardiologist, demanding that he tell me what his plan was.  He hemmed and hawed about things they were trying, but they needed more tests.  I asked him which of these things were going to make her better.   Because if none of them were going to make her better, then maybe it was time to consider hospice.  He was all "you're giving up."  And I was all "why do you need another swallow echo?  What will that tell you that you don't know already?"  He finally admitted to me that her mitral valve was blown and she would need surgery.  I pointed out that 1) she would not survive the surgery and 2) she was adamantly against it.  I had to demand that he stop torturing her and call in hospice.  She died 36 hours later.  If he could have just told us 3 months prior that it was her mitral valve and they had limited tools to manage it and there wasn't a fix, then it would have been less arduous for her, and for everyone.  I am sad that I didn't get assertive sooner.  I could have saved her a bunch of discomfort.  

45 minutes ago, Pawz4me said:

Lots of people don't want to know. They just don't. And shouldn't they have that right? Most good oncologists will either ask outright whether the patient wants to know or not, or (I think) they kind of feel there way around and try to figure it out. And I think to some extent we put too much on doctors. They don't have crystal balls. And cancer therapies have really exploded in the past few years. Immunotherapy and better forms of radiation (which aren't always curative, but can control) have been game changers in lots of ways, and they've changed things so fast that it's hard for statistics to keep up. Keep in mind that five year survival rates are always lagging behind new treatments. Immunotherapy in particular is still so new that the results aren't well reported yet. For some things right now the oncologist don't have good data/statistics to go on. So how could they advise a patient?

We know that doctors don't have crystal balls.  But, they could tell us what the survival rate history has been and that, although there are new treatments, we don't know what impact that will have.  Too many are all "look at my shiny new treatment" while ignoring the realities of the disease.  Yes, it could be someone's miracle.  But it probably isn't.  And they need to be more honest about that.  

When my dad had liver and pancreatic cancer, they gave him 3-6 months to live.  They told him that they had treatments that might give him more time, but those treatments could be quite tolerable, or terribly intolerable.  My parents and the doctor decided to try some of these treatments, all knowing that if they really interfered with the quality of life, then they were done.  My dad was insistent on that.  Well, he tolerated the treatments very well.  He would be very tired and grouchy for a day or two after chemo, but he was able to travel and really looked forward to their trips.  They had a group that would take 4-6 trips a year.  He loved going to his regular golf league.  When he didn't feel well, he still met them for dinner afterwards.  During all this time, he would have some shrinkage of his "lumpy bumpies" and some more would grow.  Dad was the one to remind us that there wasn't a cure.  This was buying time.  And as long as that time was good, he would continue.  For 3 years, he was able to continue.  The last 6 months, there was a decline, but he was still able to enjoy life and go on some of the shorter trips.  When he developed an infection, and was told he couldn't go on the next trip, he died 48 hours later.  His situation was one of open communication with his doctors ... we all knew that the end was coming and we all knew that it was all about enjoying the time.  The treatment was both life-extending and palliative.

Quote

I agree. I don't like it at all. It implies that if a person loses the battle he or she didn't fight hard enough. But some cancer patients do like it and relate to it, and I say everyone is entitled to use the language they prefer. I'd be careful of using the fighting/battle terminology unless you know how the patient feels about it, though. Some are really offended by it.

This.  It all sounds so heroic when one is "winning."  But I hate that we frame it that someone "lost the battle."  Like they should have fought harder.  I have a friend who had what they expected to be a treatable cancer.  But when the treatments didn't work for her, it broke my heart to hear people say "she lost."  SHE didn't lose.  She was unlucky.

[Jean in Newcastle]

2 hours ago, Quill said:

Yeah, thankfully, it is not this, although there may be some idea that God may just miraculously heal them. I don’t think that’s really what’s at play, though, in this case. 

Having said that, I have a friend who has lived with stage 4 cancer for about 15 years now - 15 years longer than the doctor gave him.  He wanted to enjoy life without the harsh cancer drugs and that is what he's been able to do.  His life is not this wonderful thing - he's had failing health all of those years due to an immune system that is compromised etc. but it has been on his terms.  But in this person's case, it was very much a "putting it in the hands of God" thing.  (He's not anti-doctor.  He just didn't think that the doctors had much hope to offer.) 

[happi duck]

My sister's doctor withheld information.  She spent her last two months in the hospital "fighting" and in pain.  Had we been given all the info she could have spent that time at home saying goodbyes.  She could have made her own end of life decisions.  I found out how bad it was when her body was shutting down and a better doctor battled to see her scans.

by the time the hospice people were called she was already near death...like hours.  She should have been in hospice at diagnosis.

I have to live with the decisions that fell to me.

i hate that damn rah-rah fight doctor.

[PeterPan]

5 hours ago, Æthelthryth the Texan said:

I know this has to be a sensitive place for you with your recent treatment.......but I worked in oncology and genomics for many many years. And I have seen advanced stage breast cancer treatment very often lead to quite more torment, pain, and suffering for the same outcome at the end, and that's death.

We had an article we discussed here on the boards a few years ago that said this very thing, that doctors don't make the decisions they tell their patients to do and that "go take a trip and live happily" was sometimes a better option. It had a profound affect on me, because we were refreshing our wills, etc. at the time. I think this may have been the article: https://cancerworld.net/featured/how-doctors-die/

I have a friend who has a form of neuralgia that leaves her in constant pain. When she found out she had breast cancer, she had to decide whether she was willing to risk because left with INCREASED neuralgia (apparently it was a side effect of some of the treatments they wanted to do) or whether she would refuse some of them, risking leaving it to metastasize. She is a believer, and she decided her reality was she could not deal with the potential of more permanent pain on top of her already disabling level of pain. She's a relatively young, fun person, maybe 60, so that's a hard choice to make. Now she has more spots, more tests, sigh.

My friend had to make the choice she was willing to live with and it was her choice to make, no one else's.

Edited June 25, 2019 by PeterPan

[BusyMom5]

I think we should honor whatever choice a person makes.  With regard to our elderly family members, at some point it is necessary to stop treatments and go onto hospice care.  Often times I feel like we are just buying time (at a painful cost).  I wish doctors would be more transparent,  but as an entire culture we are failing our elderly by asking if we *can* treat something rather than asking if we *should* treat it.  Failing to try is scene as a character flaw- it isnt. 

 

I am sorry for your friend.  I do know a woman who chose not to do any treatment for a very treatable cancer, she was just in her 50s.  She quit her job and enjoyed her kids and grandkids those last few years, rather than being sick and relying on being the better half of a statistic for that time.  She did pass, but I've always respected her decision. 

[Farrar]

4 hours ago, Pawz4me said:

Lots of people don't want to know. They just don't. And shouldn't they have that right? Most good oncologists will either ask outright whether the patient wants to know or not, or (I think) they kind of feel there way around and try to figure it out. And I think to some extent we put too much on doctors. They don't have crystal balls. And cancer therapies have really exploded in the past few years. Immunotherapy and better forms of radiation (which aren't always curative, but can control) have been game changers in lots of ways, and they've changed things so fast that it's hard for statistics to keep up. Keep in mind that five year survival rates are always lagging behind new treatments. Immunotherapy in particular is still so new that the results aren't well reported yet. For some things right now the oncologist don't have good data/statistics to go on. So how could they advise a patient?

Of course they don't have crystal balls. And of course there is often a chance. Cancer is not a death sentence anymore, not for most patients. I'm really glad for that. But they do often have a sense of what the real chances are. And in my experience with a number of relatives with cancer, they do not share those. Whether it's a really good prognosis or a really bad one or somewhere in between, the recommendation and conversation is a flat same - most aggressive treatment, lots of hope. 

In the case of one relative, it was completely obvious after a cancer recurred that there was no treatment. None. But some doctors still wanted to try new things and keep going. Thank goodness this relative had a medical advocate who got them to understand that the odds were nothing. There were no odds.

I'm trying to picture how the conversation you're talking about would even go or make any sense. Like, the doctor is going to say, do you really want to know? And the patient is going to say, no, not really, so then the doctor says, there's a lot of hope? I mean, what person would then think there really was a lot of hope? How does that make any sense? Or the patient says, I don't really want to know and the doctor says, I won't tell you, but let's do the most aggressive treatments possible and really put you through the wringer. How is that humane if the person has an advanced, aggressive cancer with no real hope? So then it's really just their "gut" feeling. Well, I think we know what the doctor's gut feeling is every time - try to save the patient. Because, after all, they are not the ones who will suffer. I'm sorry, but doctors have a huge bias in this arena. And they actively discourage things that would help, like calling in palliative care consults for pain and comfort - because they're encouraging patients to be "warriors." And studies show this shortens patients' lives on average, not to mention that the remaining lives they have are filled with pain, because the treatments we have are just painful, as you know.

If someone wants to, in the middle of a discussion about treatments and prognoses, actually call out, stop talking, I don't want to know, do whatever you want, then fine. I'd respect that relinquishing of agency. But short of that, doctors should be honest. And part of a diagnosis for a late stage cancer should always, always include a discussion of these issues in a frank way.

[KidsHappen]

Some people are already "fighting" just to make it through every single day and know that if anything more difficult than what they are already dealing with were to come up that they don't have any fight left. Other people are not always aware of how much someone is fighting already. 

[Ausmumof3]

2 hours ago, KidsHappen said:

Some people are already "fighting" just to make it through every single day and know that if anything more difficult than what they are already dealing with were to come up that they don't have any fight left. Other people are not always aware of how much someone is fighting already. 

Sad but also true.  I honestly believe for some people learning they have a terminal illness comes as a relief.  Certainly our elderly neighbour who outlived her husband by about twelve months was glad I think.  She’d always said when he was dying “you call for me an I will come very soon after”. Not that that was so much a situation of life being a fight just more that she had outlived the things that gave her life joy and meaning.  

[Lizzie in Ma]

13 hours ago, Æthelthryth the Texan said:

I know this has to be a sensitive place for you with your recent treatment.......but I worked in oncology and genomics for many many years. And I have seen advanced stage breast cancer treatment very often lead to quite more torment, pain, and suffering for the same outcome at the end, and that's death. Except for you (not youyou, but them) didn't get to enjoy the last bit because you were in the hospital for a last ditch effort the entire time. 

Everyone dies eventually and some would rather do it on their terms, so to speak, rather than wrung out, drugged out, and in a hospital anyway. So I don't think someone making that decision to not treat is nuts at all- regardless of what stage. Physicians are really great at some things- they are not always great at communicating the downsides and risks of cancer treatment, and often the treatment is more brutal than the disease. That is something that has gotten really obfuscated in the US and it bothers me on a really deep level. And sometimes the disabilities caused by the treatment mean a not wonderful life left to suffer through after treatment. So I think in this case, you have to let it go and trust them to be an adult over their life. Be supportive and make your peace if you can., but honestly, since you're asking our opinion, my opinion is you need to stay out of it. It's their battle to chose or walk away from, and there is no cancer treatment on this earth that is not without sizable risks and adverse events, so it's not an equitable thing to suicide. It's not like there's a magic treatment that ensures all will be okay and they're simply choosing not to do it. To some people, it's the graceful decision that allows them some sort of control instead of handing it over to a bunch of doctors. Just my 2 cents, being intimately involved in the field, though not on the same level as you as a patient. 

For me, this.  I've watched loved ones fight incurable cancers.  They did it for their family, not themselves and rather than spending the time they had living, they spent it in hospitals undergoing grueling treatment.  My sister in law said at the end that she wished she's never gotten on the "hamster wheel of cancer treatment".  It is what I will chose should it happen to me and my family knows it. 

[Pawz4me]

7 hours ago, Farrar said:

 

I'm trying to picture how the conversation you're talking about would even go or make any sense. Like, the doctor is going to say, do you really want to know? And the patient is going to say, no, not really, so then the doctor says, there's a lot of hope? I mean, what person would then think there really was a lot of hope? How does that make any sense? Or the patient says, I don't really want to know and the doctor says, I won't tell you, but let's do the most aggressive treatments possible and really put you through the wringer. How is that humane if the person has an advanced, aggressive cancer with no real hope? So then it's really just their "gut" feeling. Well, I think we know what the doctor's gut feeling is every time - try to save the patient. Because, after all, they are not the ones who will suffer. I'm sorry, but doctors have a huge bias in this arena. And they actively discourage things that would help, like calling in palliative care consults for pain and comfort - because they're encouraging patients to be "warriors." And studies show this shortens patients' lives on average, not to mention that the remaining lives they have are filled with pain, because the treatments we have are just painful, as you know.

If someone wants to, in the middle of a discussion about treatments and prognoses, actually call out, stop talking, I don't want to know, do whatever you want, then fine. I'd respect that relinquishing of agency. But short of that, doctors should be honest. And part of a diagnosis for a late stage cancer should always, always include a discussion of these issues in a frank way.

The oncologists we spoke with, including the one we chose, all handled it with a variation of this: They explained his first line treatment options and followed up with some version of "And if you don't want any treatment--and some patients with this type of cancer certainly do choose to not have treatment--then you probably have about a year before you start experiencing life altering symptoms."

Followed by patient silence that they waited for DH to fill.

And then the oncologist we chose went on to explain the statistics for the first line treatment--how many people have some statistically significant shrinkage of their mets, how many have stability, and how many have to quit that treatment because their cancer worsens or they experience intolerable side effects. He told us about his own patients' experiences with the drug, including the shortest and longest times it had worked, the most common side effects, etc.

It was all very fact based with little/no emotion and certainly no talk of "fighting" or being overly positive, and certainly no rah rah cheerleading. None of the oncologists did that. Pretty much the polar opposite of what you seem to have experienced.

We've also had the polar opposite experience in terms of palliative care. Perhaps it's been awhile since your experiences? Or perhaps your experiences were at a not-so-great cancer center? Now it's ALL about the palliative care. And no, being under treatment doesn't rule out palliative care. It's pushed hard. Maintaining quality of life is a huge priority.

FWIW, the cancer forum I belong to probably has a couple of hundred active participants, and our experience is not unique at all. Sure people report "bad apple" oncologists sometimes, but it's much more the exception than the rule. But this is a relatively rare type of cancer, and most patients have specialist oncologists. It's not like the much more common cancers (breast, colon, etc.) where any run-of-the-mill, generalist oncologist will have the experience to treat. So that may be a factor, too. 

Edited June 25, 2019 by Pawz4me

[JFSinIL2.0]

I have seen both sides of this coin, with stage 4 colon cancer.  MIL was mid-80s and very active in her community when she told her family one June that she had it, and would be gone within six months.  She decided to not put herself or her more frail hubby ( when everyone had always assumed would go first) through extensive treatments that would only drag things out and make them both miserable.  A former  reference librarian, she had done her research.  She figured she would have enough time to sell most of their stuff and the condo, and move them into assisted living and get FIL settled safely before the hospice nurse would be needed, and she made it with only one month to spare.  But her quality of life was as decent, and she stayed lucid and in charge til the end.

my much younger neighbor, not yet 40, got her diagnosis and they had just gotten home from the doctor, in shock, when by sheer chance I went over for some reason.  Could only hug them both and go back to my house to cry.  S. was determined to try and make it three years to try and raise her three young kids as much as possible (all still in elementary school).  There was no treatment or health food that family did not try, and I suspect S well knew she was not going to be the rare survivor long before her hubby did.  But the last few months were painful, and her quality of life meager at best.  She made it 2.5 years, and they crammed in as many happy memories for the kids in the time S had before the end.  

So it can depend on life circumstances. Does the sufferer have a good reason to fight to stick around as long as possible, to help settle or raise others?  Note, my MIL, who declined trying to extend life, was very devout Catholic ( one of my SIL is a Dominican sister), while the neighbor who had to try and make it for her young family did not believe in an after life.  So maybe whether or not one believes they will see loved ones later is part of the decision?

forgive typos, 2-fingered iPad typing here, bah!

Edited June 25, 2019 by JFSinIL2.0