Palliative Care Misunderstandings

[Laurettas]

I know this is long but I think it is a very important topic.

Two recent studies have revealed that between 60% and 80% of patients receiving palliative therapy with radiation or chemotherapy for incurable cancer do not understand that the intent of the treatment is palliative, not cure. The studies highlight a communication chasm between doctors and patients, but oncologists say it is unclear who is to blame. The gap surprised some clinicians.

“The rates, to me, were astonishingly high. I didn’t expect it to be zero, but based on prior, smaller studies, I expected it to be more like one-third of the patients,” said Jane Weeks, MD, an oncologist at Dana-Farber Cancer Institute in Boston, who was involved with both investigations.

Both studies relied on data gathered between 2003 and 2005 from CanCORS (Cancer Care Outcomes Research and Surveillance Consortium), a multicenter prospective cohort study of patients with lung or colorectal cancers (CRC). The Consortium includes 15 Veterans Affairs facilities and five large health maintenance organizations in five geographic regions of the United States—northern California, Los Angeles County, North Carolina, Iowa and Alabama.

In the study led by Dr. Weeks, reported in The New England Journal of Medicine (NEJM 2012;367:1616-1625, PMID: 23094723), researchers analyzed survey data from 1,193 patients in CanCORS who received chemotherapy for newly diagnosed metastatic lung cancer or CRC. Responses were evaluated based on the following three-part question: After talking with your doctors about chemotherapy, how likely did you think it was that chemotherapy would (a) help you live longer, (b) help you with problems you were having from cancer or (c) cure your cancer? Respondents could answer one of five ways: very likely, somewhat likely, a little likely, not at all likely, or don’t know/refuse to answer. Overall, 69% of patients with lung cancer and 81% of patients with CRC said they did not understand that chemotherapy was not at all likely to cure their cancer.

In a second study, reported at the 2012 annual meeting of the American Society for Radiation Oncology (ASTRO; abstract 4), investigators analyzed survey data from 384 patients diagnosed with stage IIIB with malignant effusion or stage IV lung cancer who had received palliative radiation therapy. Aileen Chen, MD, MPP, a radiation oncologist at Brigham and Women’s Hospital and Dana-Farber Cancer Institute in Boston, who presented the study, pointed out that stage IIIB with malignant effusion is now considered stage IV by the American Joint Committee on Cancer. Researchers analyzed answers to the same question used in the NEJM study, but with the word radiation substituted for chemotherapy.

The researchers found that 64% of patients did not understand that radiation was not at all likely to cure their disease. Nonwhites were more likely to believe that radiation might be curative (blacks, odds ratio [OR], 1.5; other nonwhites, OR, 3.3). Of the 384 patients, 70% were white and 14% were black. Additionally, older patients were more likely to have inaccurate beliefs, and patients whose surveys were completed by surrogates were less likely to have inaccurate beliefs.

The communication disconnect can cause several problems. “Patients with unrealistic expectations are less able to make informed decisions about end-of-life care and may therefore pursue more intensive therapies,” said Dr. Chen. Dr. Weeks pointed out that studies show that when end-of-life discussions happen early, patients have a better quality of life, are less likely to receive futile medical care and are more likely to die at home, if that is their desire. Patients who don’t understand their true prognosis also may delay getting their affairs in order.

The researchers admitted that the studies were limited because they did not ascertain the underlying reasons for patients’ expectations. According to Robert Arnold, MD, the chief of Palliative Care and Medical Ethics at the University of Pittsburgh School of Medicine, the problem with these types of studies is that they “often don’t distinguish between what people think and how they came to that thinking.

“Is the problem that the patient didn’t hear what the doctor said, the doctor didn’t say it, or is the problem that the doctor said it and the patient heard it, but they don’t sort of believe it. I may have heard the doctor say ‘this is what happens to most people,’ but I don’t think I’m most people. I am way better than most people,’” said Dr. Arnold. “I think we need to try to be clear about where the communication breaks down, and the problem is we don’t know.”

If an oncologist discovers that a patient doesn’t agree with what he or she said, action should be taken. “In that case, we can say, ‘I see you are really hoping it gets better, and I wonder if you are willing to think about if it doesn’t get better,’” suggested Dr. Arnold.

He said studies have shown that when doctors present things in a positive framework, patients are less likely to hear bad news. If a doctor says, “I can’t cure it, but there is a lot we can do,” then patients spend time focusing on the “lot we can do” and are less likely to hear the bad news.

Dr. Weeks thinks a major factor contributing to the communication gap is that doctors are stating the facts, but not reinforcing them. “My strong hunch is that the oncologist tells the patient at the time they are initially discussing chemotherapy that it is not going to be curative, but that they don’t dwell on it and they don’t come back to it later in time,” she said. “They don’t reinforce that message, and they allow the patient to slip into thinking that chemotherapy might be curative.”

She said another problem could be the use of ambiguous language. “The physician will talk about having a wonderful response to chemotherapy and that is actually quite a technical term that means tumor shrinkage. It doesn’t mean cure,” explained Dr. Weeks. “But somebody who isn’t trained in medical oncology would hear that and say ‘I’m being cured.’ If a physician doesn’t make a point of being clearer and reinforcing what is really happening, it is not hard to understand how the misunderstanding develops.”

David Hui, MD, an assistant professor in the Department of Palliative Care and Rehabilitation Medicine at the University of Texas MD Anderson Cancer Center in Houston, believes the two CanCORS studies are more representative of what is going on in the community setting than other smaller studies that have shown the communication regarding palliative therapy is not that bad. He pointed out that given the high prevalence of gaps in communication, oncologists should routinely assess patients’ understanding.

“A good way to start is to ask patients, ‘What is your understanding of your illness? Based on what we discussed earlier, what do you think we can achieve with this treatment?’” said Dr. Hui. “Understanding whether the treatment is of a curative nature or not is important because patients make decisions based on the perceived benefit.”

Dr. Arnold said that researchers should launch studies to identify the root of the problem. “The problem with both of those studies is that they tell you what the patient heard. They don’t tell you what was said or what did the doctor think they were saying,” he said. “Part of what you have to do is triangulate all three pieces of information. These studies tell us there is a problem. What the solution is to the problem, how to fix that problem … [we] don’t know that. If you don’t know what happened in the black box, you don’t know what to change.”

[Kathryn in MN]

Just like most on this board, the "never give up" and "you can be cured" is pushed, pushed, pushed in society. So even when we are told by our oncologists that we are not curable and treatment is palliative, people do not "hear" that. They hear what they want to hear. This is the biggest problem in this communication gap.

When my oncologist informed me that I was indeed stage IV all along, he told me the treatment was now considered palliative and not curative. He made that clear. But we don't go into that every time I see him. We do whatever we can to keep the cancer beat down to the lowest tumor load and to alleviate pain. Chemo isn't a cure. Radiation isn't a cure. RFA isn't a cure. Surgery can be a cure, but for many of us we can't get surgery that will cure. I know that each time I do radiation, chemo or RFA that it isn't going to cure me. But it sure does beat the cancer back down to give me a chance to live longer. And some of those treatments also help my quality of life by lessening pain.

When I read questions asking if anyone who can't have surgery has been cured, or if you can be NED if you never have a primary tumor removed, it becomes very apparent that people just don't get it when it comes to stage IV or recurrent cancer situations. For the majority of us anything we do is palliative. It might also get us to NED for a while. We might live a long time with chronic disease. But cure happens for a very small percentage of stage IV or recurrent patients and that is almost always through surgery.

This doesn't mean anyone has to give up just because they hear "palliative" but somehow that seems to be the mindset of many. If you accept palliative, then you are giving up. But you are not - you are doing what you can to keep the cancer beat down as long as you can. And for some of us that can be a long time. For others, not very long. And for some, they eventually do get to a surgical point and have a shot at a cure. Or maybe if we can hang on long enough a cure may be found. Or a treatment to keep us alive for decades may be found.

The attitudes of our society about death and "positive attitude" and "never give up" really feed this problem of patients not "getting it" when it comes down to palliative procedures vs curative. They've been told palliative, but in their minds they feel it could be a cure and they hang on to that. If it has been explained that they are terminal, people get defensive and say that the doctor is awful and shouldn't say things like that because there is always hope. Doctors have been bashed here on this board for telling the truth as they see it. We don't like bad news, so we shoot the messenger. So doctors mostly do not dwell on the palliative issue. They tell you and then move on to keeping your cancer under control the best they can.

[hannahw]

Thanks for sharing this. It's super important. I think we don't need to look any further than this message board to realize that it's true and there are serious implications.

If there's a positive, it's the fact this is actually being studied, data is being gathered and this information will help doctors and patients be more successful in communication in the future. One thing that I think is important for people to know in tandem with this is that patients who are at end of life and receive palliative and then hospice care actually tend to live longer and with higher quality of life than those who do not.

We've seen on this board that sometimes patients don't want to hear it and get very angry at their doctor when they're told, but it's not just a patient problem. Doctors often fail to tell patients clearly. Or, after they tell the patient, they fail to allow for a conversation that helps the patient digest the news. Some times patients are left with the impression that certain topics are off limits.

In the end, blame doesn't matter. I think everyone does there best, but these are hard conversation and can be difficult to see clearly, to see what the impact is until after it's too late. The main thing to know as a patient is that it's ok for you to bring up the topic of palliative care and end of life. It's ok to talk about things like DNR, durable power of attorney, your wishes and expectations regarding care. I read a study a while back that talked about how doctors often don't know how to start the conversation so they don't. Then they're relieved when the patient starts it for them.

Also, know that treatment that isn't curative doesn't mean you're quitting, failing, giving up or any of the other words we apply to ourselves that add a huge burden to the journey. A lot of times, acknowledging that your treatment isn't curative can help you live better by putting the focus on comfort and quality of life. You can still get treatment and you don't have an expiration date.

[southernkiwi]

Hi, I recently had the palliative care conversation with my oncologist. She was pretty blunt, so no false hope there. But it has taken me several weeks to work out that hope comes in many sizes - cure is off the table but I can still hope for however many good years, and I might as well aim for that until it is taken off the table as well. What I would like is some investment in the art of storytelling. Doctors are pretty good with evidence (for what that's worth) but not so good at giving you several simple sentences about your situation, that you can understand and pass on. I had one surgeon who did that really well - you could hear his voice change when he got to the relevant sound bite. But it's not always easy to make sense of the information you get, especially if you don't want to hear it.

[jenniejojjr]

From reading various posts on this forum it's easy to see that the stats are correct. A large number of posters seem to think their case will be different, they will be cured, God will heal them, that their positive attitude will heal them, their herbalist will work wonders, and that they are going to beat "this thing". I always cringe when I read this stuff, it is as if no one was listening at the onc's office. A positive attitude and herbs are no match for cancer, and I don't think God randomly chooses people for miraculous healing. Frankly, I don't think God sees death as a bad thing, that is what's supposed to happen, and it rarely happens on our desired timetable. I also see alot of people stuck in "why me" and "it's not fair". As someone with stage 4, I hate reading these sorts of comments. If it is not fair that it happened to you, does that mean it's ok that it happened to me? A stage 4 dx gives one a chance to reconcile relationships, make wills, sign DNRs, make sure onc is on board with end of life care, and pursue options that might prolong life, maybe by months or a couple of years, but expecting a cure-you're probably going to be dissappointed.

[Alreadyhere]

Hello, I wanted to jump in this post and ask a "related question" we've never necessarily been told by any oncologist why surgery is considered curative compared to radiation. I was always curious as to why if malignancy is only found in one location why radiation wouldn't be as effective at eliminating that particular area for good. I know at stage 4 it can reappear at any time but if NED status is achieved from radiation, why is it less likely to be cured compared to surgically removing same singular area? I can understand why chemotherapy couldn't be curative in that situation just nt sure why radiation wouldn't be if its not multiple metastasis. Sorry just really confused!

[Bev G]

Hi, I recently had the palliative care conversation with my oncologist. She was pretty blunt, so no false hope there. But it has taken me several weeks to work out that hope comes in many sizes - cure is off the table but I can still hope for however many good years, and I might as well aim for that until it is taken off the table as well. What I would like is some investment in the art of storytelling. Doctors are pretty good with evidence (for what that's worth) but not so good at giving you several simple sentences about your situation, that you can understand and pass on. I had one surgeon who did that really well - you could hear his voice change when he got to the relevant sound bite. But it's not always easy to make sense of the information you get, especially if you don't want to hear it.

I liked every word you just wrote. Amen.

[LeighB]

I know my dad and aunt are under similar misunderstandings regarding treatment. I've asked my aunt why she pushes the idea that his treatments are curative. She then just started crying. The little more I could get out of her was that she NEEDED to believe this. I didn't push the topic anymore. I assume that remaining positive and avoiding depression is a worthy enough goal, even if it means lying to yourself.

[skypup]

I had to do the work with my onc. I started, "My understanding of my situation is this..." and ended with "Is that correct?" All he had to do was say yes. But why did I have to do the heavy lifting? I understand many patients just don't want to know, and that's fine, but others of us deserve straight talk when we show we are ready. Kinda like kids and sex...

[chemo sabe]

I agree with everything "jenniejojjr" wrote. No one wants to hear word CANCER - but all of us have - and as a patient, I think I owed it to myself to gain an understanding of my diagnosis. I try to stay real.

[hannahw]

I know my dad and aunt are under similar misunderstandings regarding treatment. I've asked my aunt why she pushes the idea that his treatments are curative. She then just started crying. The little more I could get out of her was that she NEEDED to believe this. I didn't push the topic anymore. I assume that remaining positive and avoiding depression is a worthy enough goal, even if it means lying to yourself.

I think you're right. Everyone has their own way of dealing with things. It's tough though because it seems like there's a good chance there will be trouble for your Aunt down the road as result of the coping mechanisms she's using now. I guess the only thing you can do is be supportive, both now and later, especially in the event that she struggles down the road because she didn't have time to prepare for the end of your Dad's life.

I had to do the work with my onc. I started, "My understanding of my situation is this..." and ended with "Is that correct?" All he had to do was say yes. But why did I have to do the heavy lifting? I understand many patients just don't want to know, and that's fine, but others of us deserve straight talk when we show we are ready.

Ultimately I think it comes down doctors being human too. Communication is tough. The emotions are tough. These aren't easy conversations to have so the doctor might try to avoid them. Or maybe it's difficult for the doctor to know what the patient wants/needs to hear. Just reading this forum you can see how when the doctor communicates in a way the patient doesn't like it can be explosive. There's also the whole issue of what the patient wants to hear versus what the patient needs to hear. Some docs will tell you the brutal truth whether you want to hear it or not, some will keep it to themselves because they think the patient can't, or doesn't want, to handle it. The whole thing is kinda fraught and I don't think they spend that much time in med school teaching good communication. Some of the studies I've read suggest that doctors feel under-trained when it comes to have the difficult conversations. So, it's not surprising that a lot of them aren't good at it (especially since "good" is a moving target).

Anyway, I imagine when a patient brings it up it's actually a relief to some docs.

[jenniejojjr]

In response to the "one spot" post-once you are a stage 4 one must understand that the horses have left the barn. A million cancer cells are so tiny they can fit on the end of a pin. The pointed end. You may have one visable spot, but cancer cells have invaded your lymphatic system or your bloodstream and are looking to set up housekeeping elsewhere. A few, a very few get lucky with surgery, but radiation and chemo are always palliative. I've had numerous conversations with my dad about the reality of my situation, and this is a college educated man, an engineer, and so he has the brains to understand what is going to happen to me, and still two nights ago asked if my treatment was intended to cure or contain my cancer! Arggggh!!!!! I get soooo frustrated. He was in the room after I was relieved of my ovary, and the surgeon explained the significance of pelvic implants back in Nov. He was in the room when my onc had THE conversation. Still, he refuses to believe it. It is irritating, and heartbreaking, and it drives me nuts, to the point that I don't always answer the phone. I am a registered nurse, so it is difficult to fool myself, about my dx so I don't bother.

[chemo sabe]

The big point I have tried to make here before is that many folks on this forum seem to be incapable of understanding their own mortality. It is not the doctors fault if you cannot be honest with yourself. It is not the doctors fault if you refuse to understand your diagnosis and probabilities of being cured. An oncologist is not a phychiatrist.

[lohidoc]

A good topic and thanks for raising it. I appreciate all the comments, even those I do not agree with. My take is different. I do not buy the "cancer is incurable" line. I regard it as nothing more than an alibi for the industry to explain its dismal failure. I believe cancer can be cured, and I believe my own cancer can be cured, despite an explosive recurrence of my cancer last June. "The drugs we make cannot cure cancer, therefore cancer cannot be cured" is an argument that would get you kicked out of any first year philosophy class. But that is what they feed us, what they would have us believe. The obvious retort is "make better drugs" but unless the industry changes that ain't gonna happen any time time soon.

So there is your oncologist, a kindly silver haired gentleman, his wall covered in impressive certificates and diplomas (I may be projecting myself here). And with all the authority of his profession, his specialty, he tells you, with what appears to be compassion and empathy, that your condition is incurable, that all that can be offered is time (but at what a price!). He will tell you he will work with you, support you, ease your pain and offer hospice care when the time comes. But those kind and compassionate silver haired words do not reveal that he regards your premature death as a natural and perfectly acceptable outcome of his treatment. And five minutes later he will have forgotten all about you. And when the notice of your death appears on his desk he will give it no more than ten seconds thought before moving on to the next patient….. All of this, all of this testifies to the impotence of those who are meant to cure us. They've dropped the ball, and they know it.


Do I know how cancer can be cured? No, but I am beginning to get some ideas. Not because I am deluding myself, or because I am ill informed. I know the reality of my disease, its certain outcome. But something in me says - NO! - it won't do, I will not let you get away with it. This defeatist "cancer cannot be cured", "we all have to die anyway" (invariably expressed by those who do not face death) simply helps to support the status quo.

I salute, and raise my glass (Johnny Walker Black as it happens) to all my fellow sufferers, my comrades who struggle with this disease, many for years, who are not prepared to surrender, who do not accept the pablum handed to us, those who do not go quietly. The mothers who look at their children and want to live, the old guys like me who believe they deserve better after a life time of work and sacrifice. The soldiers, who continue the fight long after the generals have gone to bed. The stubborn refusal to hear the fat lady sing. I salute you all, I want you to raise your voice, show your anger, and use the energy to live and survive. Find your voice, and the freedom to express yourself. And know, and never forget where all this comes from: The will to live!

I have a scan tomorrow morning.

[jenniejojjr]

Good luck with that.