Medical Forum / Diseases and Disorders / Cancer / February 2007
Why Do Patients Choose Chemotherapy Near the End of Life?
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J - 19 Feb 2007 09:09 GMT http://www.jco.org/cgi/content/abstract/24/21/3490 ournal of Clinical Oncology, Vol 24, No 21 (July 20), 2006: pp. 3490-3496 © 2006 American Society of Clinical Oncology. DOI: 10.1200/JCO.2005.03.6236
Why Do Patients Choose Chemotherapy Near the End of Life? A Review of the Perspective of Those Facing Death From Cancer
Robin Matsuyama, Sashidhar Reddy, Thomas J. Smith
From the Massey Cancer Center of Virginia Commonwealth University, Richmond, VA
Address reprint requests to Thomas J. Smith, MD, Virginia Commonwealth University, Division of Hematology/Oncology and Palliative Care, MCV Box 980230, Richmond, VA 23298-0230; e-mail: <see web page>
PURPOSE: The number of patients receiving chemotherapy near the end of life is increasing, as are concerns about goals of treatment, toxicity, and costs. We sought to determine the available sources of knowledge, the choices, and concerns of actual patients, and how patients balanced competing issues.
METHODS: We used a literature search from 1980 to present.
RESULTS: Available patient sources provide little information about prognosis, choices, alternatives, consequences, or how to choose. Many patients would choose chemotherapy for a small benefit in health outcomes, and for a smaller benefit than perceived by their health care providers for their own treatment.
Adverse effects are less a concern for patients than for their well health care providers. There are no decision aids to assist patients with metastatic disease in making their choices, such as there are for adjuvant breast therapy.
CONCLUSION: The perspective of the patient is different from that of a well person. Patients are willing to undergo treatments that have small benefits with major toxicity. Receiving realistic information about the different options of care and the likelihood of successful treatment or adverse effects is difficult. These factors may explain some of the increased use of chemotherapy near the end of life. Decision aids and honest, unbiased sources to inform patients of their prognosis, choices, consequences, typical outcomes, and ways to make decisions are needed. More prospective information about how patients make their choices, and what they would consider a good choice, would assist informed decision making.
Bozz - 19 Feb 2007 10:01 GMT The simple answer is to gain hope when there is none, fear of death or the effect of your death on your loved ones and taking an active rather than passive path. Even bad odds may look better than no odds at all.
My wife had an option of second line chemo or no chemo for her stomach cancer. If she had not had it then I believe that she would not be with us now. The chemo has allowed her to swallow food again where it was becoming virtually impossible before. The oncologist suggested toddle of to the hospice and let them take it from there, the chemo might work but the odds are against you.
It is often said in this news group that chemo does not prolong life. In my wife's case that is patently untrue and it disturbs me to see this repeated again and again as gospel. While we as a couple are reasonably intelligent people with a degree of medical background and are not intimidated by the medical profession, that is not the case for all. My next door neighbour didn't really know what an oncologist was when they had an appointment to see one. I would suggest the use of less absolute terms, rarely, may not, infrequently rather than a black an white never approach. Never hardly ever occurs and I feel that it could put people off at least exploring the possibility.
Ian
john - 19 Feb 2007 10:49 GMT Bozz wrote in alt.support.cancer:
[...]
> It is often said in this news group that chemo does not prolong life. > In my wife's case that is patently untrue and it disturbs me to see > this repeated again and again as gospel. In my case also. Following the first dose there was an immediate shrinking of already existing tumours and since the first dose over 9 months ago there are no new (noticable) tumours. With an average life expectancy of 7 months at the start of chemo I am now into my 10th month and I should be around for a while yet, although I'm not deluding myself that it will save me. I have no side effects from the treatment except for tiredness in the first few days after a dose. If I had bad side effects I might be questioning the point of it. If the quality of life was bad I might have to ask myself if it is worth it because I can't see the point of the treatment if it's not going to save your life and you're violently ill *because* of the treatment.
I'm certainly not saying that my experience means chemo will work for everybody. I'm not deluding myself that it's going to save my life. But has it prolonged it? Definitely.
Carlisle - 19 Feb 2007 14:19 GMT > Bozz wrote in alt.support.cancer: > [quoted text clipped - 19 lines] > everybody. I'm not deluding myself that it's going to save my life. But has > it prolonged it? Definitely. Right, and there's now the SIRT, radiofrequency ablation and other targeted work done by radiotherapists that does not even include traditional chemo per se. Sometimes it does. Here's a case in point for those who "do not want to promote false hope". My sister's father in law was given a death sentence with liver cancer. He went up to Ohio State for specialized treatments and it stopped the cancer in it's tracks. He lived six more years! He died of a heart attack at age 85. Yes, you sure do have to look at quality of life issues, but most people want some hope. The following is from the EC (esophageal cancer news group)--_
"I posted about this yesterday on the EC-G website, but I am writing again because I think that it is so important to consider this new protocol for liver tumors. I am writing to you personally to suggest that you see if you are a candidate for SIRspheres implantations. My husband Richard was dx'ed Nov 2004 with EA with mets to liver, lungs and lymph nodes and was given 3 months to live. We refused to accept that verdict by the first oncologist and ended up at Anschutz Cancer Pavilion, a new facility, at Univ of Colorado Health Science Center in a suburb of Denver. Dick went through 7 rounds of cisplatin, taxol and 5Fu, which got rid of the lung and lymph node tumors and reduced the liver tumors to 5 from too many to count. There were still primary tumor cells in the wall of his esophagus. He then became a candidate for SIRspheres, Stategically Implanted Radiation spheres, in clinical trial at USCHC. He was probably the first EC patient in the country to have this in August and Sept 2005. Basically sirspheres are tiny microspheres filled with yttrium 90, an element with a half-life of 64 hours that emits beta irradiation. The spheres are introduced into the liver through the groin artery to the hepatic artery by a catheter and the spheres are injected into the middle of each tumor. They deliver 100x more irradiation to the tumor cells than to the surrounding normal liver cells, and the radioactivity disappears in about a week. The spheres continue to starve the liver tumors of nutrients by blocking the microcirculation after the radioactivity disappears. Dick was unable to have standard irradiation because his largest liver tumor rested at the outer edge of his right liver, against his right kidney. Any other type of irradiation would have destroyed his kidney. He had absolutely NO side effects from either of the two procedures after he recovered from the light anesthesia. In June 2006, his liver was declared free of tumor by PET/CT scan, so the spheres worked as pro mised on him, gradually starving the tumor after the rrradiation had done its primary killing. Go to the company website, www.sirtex.com for more information. Beware that this is relatively new, Dick is probably the first complete success story, and many oncologists may dismiss this as not being tried and true or just not feasible, because they are not aware of it. Another similar product is made by Theraspheres, and they also have a website. We always knew that Dick's liver tumors were his biggest stumbling block and to have them so effectively eliminated is a miracle to us. If you would like the name of the interventional radiologist that performed the procedure on Dick, I will be happy to provide it. She is an outstanding physician, former president of the American Radiology Society, and very enthusiastic about the use of this technique on liver tumors. The Sirtex website lists the hospitals in the US that are doing SIRspheres treatment and they will provide a CD to describe the procedure fully. Good luck and feel free to correspond with us if you have more questions. Note that Dick did have two small recurrent lung tumors in July 2006 which were eliminated by the new Varian stereotactic, multifocal irradiation instrument that delivers very precise irradiation with reduced side effects. His irradiation to the lungs was over a 3 day period and they were gone 3 weeks later." Lois Dickerman, Wife of Richard, dx Nov 2004, Stage IVb esophageal adenocarcinoma with mets to liver, lymph nodes and lungs. Clinically stable now 27 months after dx. His oncologist will not call him NED, for there is no precedence for someone with his degree of involvement to have reached this stage.
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J - 19 Feb 2007 20:06 GMT > On Feb 19, > The following is from the EC (esophageal cancer ACOR list)--_ [quoted text clipped - 37 lines] > always knew that Dick's liver tumors were his biggest stumbling block > and to have them so effectively eliminated is a miracle to us. If you http://www.radiologyinfo.org/en/info.cfm?pg=chemoembol J
Steph - 19 Feb 2007 16:23 GMT > Bozz wrote in alt.support.cancer: > [quoted text clipped - 22 lines] > has > it prolonged it? Definitely. You believe. There is no "definitely" about it. Response and survival are very distant cousins, and often not on speaking terms. Correlation does not imply causation.
Steph - 19 Feb 2007 16:21 GMT > The simple answer is to gain hope when there is none, fear of death or the > effect of your death on your loved ones and taking an active rather than [quoted text clipped - 12 lines] > intelligent people with a degree of medical background and are not > intimidated by the medical profession, that is not the case for all. Your statement is patently untrue. What is said often (and often by me) is that for the vast majority of adult cancers which are advanced and metastatic or recurrent, chemotherapy has no effect on median survival. This is true, and is based on the facts. Does that mean that there are not some patients who do have improved survival due to chemotherapy? No. But if there is no effect on median survival, for every patient who does better, there is one who does worse. In your wife's case, any improved survival may be related to second line chemo, or it may be completely unrelated (which is much more likely). You yourself pointed out that the benefit she has seen is in swallowing - that is a quality of life issue, not quantity. What isn't helpful on NG like this is people who take a carefully worded statement and over-simplify it and take it out of context. Like you
Bozz - 19 Feb 2007 19:30 GMT >> The simple answer is to gain hope when there is none, fear of death or >> the effect of your death on your loved ones and taking an active rather [quoted text clipped - 26 lines] > What isn't helpful on NG like this is people who take a carefully worded > statement and over-simplify it and take it out of context. Like you Steph, Actually it was the maintenance of a patent lumen at the oesophageal gastric junction that was achieved by the chemo. The over simplification would be, no hole, no food or fluid, no life.
Believe me, before I make comments I look very closely at carefully worded statements. There is a general trend with you and J to suggest that there is no effect on survival when, in any normal population there will be some good and some bad effects. The hope is always that it will be good for the individual, even if the reality is statistically for the population it may not be. You see it from one direction, sufferers may see it otherwise.
I think that you will find applying things to my situation actually is what's called putting things into context. If that is not what this group is about then it is not what I thought it was. Things are never black and while, just a thousand shades of grey.
Ian
J - 19 Feb 2007 20:07 GMT > Actually it was the maintenance of a patent lumen at the oesophageal gastric > junction that was achieved by the chemo. The over simplification would be, [quoted text clipped - 13 lines] > > Ian Average survival for stomach cancer is one year. Your wife was diagnosed in Jan/06 and it looks like there were no mets. The man whose mother did not have chemo lived more than one year with re-operations. Joe's brother lived only a few months with chemo. So it varies. I've supported your wife's being on chemo because that was the only option to help her eat and swallow. You'll know when chemo resistance starts setting in, if not already. I see the dose has been reduced due to blood counts. So we'll see how things go. J
Bozz - 19 Feb 2007 21:09 GMT >> Actually it was the maintenance of a patent lumen at the oesophageal >> gastric [quoted text clipped - 34 lines] > So we'll see how things go. > J I'm all to painfuly aware of the stats. While we are up 15% somebody else is down 15%. I think that the point I'm trying to make is that for the patient it's 100% them when they make a choice. Thanks for reminding me about the chemo resistance, don't forget, my wife is a chemo specialist nurse so we are very aware of that too.
Ian
john - 19 Feb 2007 20:09 GMT Bozz wrote in alt.support.cancer:
>>> The simple answer is to gain hope when there is none, fear of death >>> or the effect of your death on your loved ones and taking an active [quoted text clipped - 46 lines] > group is about then it is not what I thought it was. Things are never > black and while, just a thousand shades of grey. Well put. People who spend their time reading journal articles (or only the abstracts :-) ) tend to ignore the introduction and the discussion and just look at the stats. You can't blame them especially if they're busy. I've never claimed that my situation is relevant to anyone else. Statisticians don't like people like you and me. They like medians, means and modes. If chemo only works (extends life) for 1 in 5 people then the stats are going to be negligible or non-existent, especially if that's your agenda :-)
Steph - 20 Feb 2007 02:59 GMT > Well put. People who spend their time reading journal articles (or only > the abstracts :-) ) tend to ignore the introduction and the discussion [quoted text clipped - 4 lines] > stats are going to be negligible or non-existent, especially if that's > your agenda :-) Some of us spend most of the day looking at patients, and only get to the journals in our "spare" time.........
Steph - 20 Feb 2007 02:58 GMT >>> The simple answer is to gain hope when there is none, fear of death or >>> the effect of your death on your loved ones and taking an active rather [quoted text clipped - 30 lines] > gastric junction that was achieved by the chemo. The over simplification > would be, no hole, no food or fluid, no life. And a PEG would have achieved the same.
> Believe me, before I make comments I look very closely at carefully worded > statements. There is a general trend with you and J to suggest that there > is no effect on survival when, in any normal population there will be some > good and some bad effects. The hope is always that it will be good for the > individual, even if the reality is statistically for the population it may > not be. You see it from one direction, sufferers may see it otherwise. Unfortunately, there is a vast overtendency amongst patients and families (for obvious reasons) to attribute benfit to treatment where none is to be found - I merely try to keep the discussion objective, and nased on the facts.
> I think that you will find applying things to my situation actually is > what's called putting things into context. If that is not what this group > is about then it is not what I thought it was. Things are never black and > while, just a thousand shades of grey. > > Ian Ian, you are the one who said "If she had not had it then I believe that she would not be with us now", so don't go overboard with the black and white bit. I have no problem with anyone having any treatment, as long as they go into it with their eyes open, and have realistic expectations about what it can achieve. Time and time again both here and in my practice I see that is not the case.
Bozz - 20 Feb 2007 05:58 GMT >>>> The simple answer is to gain hope when there is none, fear of death or >>>> the effect of your death on your loved ones and taking an active rather [quoted text clipped - 61 lines] > it can achieve. Time and time again both here and in my practice I see > that is not the case. Steph, I believe that "I believe" is very grey indeed.
I do see what you are saying, but a measured "give it a go" as opposed to "give up" is worth a try, in the real world as opposed to statistically. There is more chance of things working than winning the national lottery. When we went into the last batch of chemo it was with the thought that if it really wasn't working then indeed we would stop it. We would have felt that we had missed an opportunity if we had not tried.
Ian PS Off to Paris this morning. Who cares how or why we got the time. Laissez les bons temps rouler!
Steph - 20 Feb 2007 06:43 GMT > Ian > PS Off to Paris this morning. Who cares how or why we got the time. > Laissez les bons temps rouler! Have a good one...........
Giuditta - 20 Feb 2007 12:08 GMT > The simple answer is to gain hope when there is none, fear of death or the > effect of your death on your loved ones and taking an active rather than [quoted text clipped - 19 lines] > > Ian Thank you, Ian. I know a number of people from the cancer clinic whose lives have been prolonged for years because of chemo. My friend from high school had a prognosis of 12 months or less...it's been three years, and he's still enjoying life, his wife had a prognosis of 6 months, and that was 12 years ago...she's still kicking up her heals, working, living a full life.
A friend of my sister's came over yesterday with his xray of the fist-size tumor in his lung...it was malignant. He was prayed over, and the next CT scan was normal...no tumor at all. The doctor said he would have to give that one up to God because he didn't know where the hell it went. Keith (tumor guy) never had chemo but would have had the tumor stayed.
I pray to God that the same happens for my husband. Chemo gave us one thing the doctor didn't (at first), and that was hope. Without chemo my husband wouldn't have had Christmas with and wouldn't have been here for our son's 18 birthday yesterday.
Kick cancer's a.s, chemo! That's what I'm talking about. Giuditta
starfleet - 22 Feb 2007 06:20 GMT Bozz schreef:
> I would suggest the use of less absolute terms, rarely, may not, > infrequently rather than a black an white never approach. Never hardly ever [quoted text clipped - 4 lines] > > I agree with you Ian, though I understand where the bleak approach comes from. I have seen to often that the last few months of someones life weren't spent to the fullest, but in constant fatigue and visits to the hospital for yet another chemo that maybe did something for the tumors but nothing for the quality of life.
In my case my response to first line chemo was very good and am now spending quality time in the tail of the median, I won't opt for a heavy side effects second line or third line chemo though.
Anne
alex - 22 Feb 2007 09:30 GMT > I agree with you Ian, though I understand where the bleak approach comes > from. I have seen to often that the last few months of someones life [quoted text clipped - 7 lines] > > Anne To summarize the majority feel that are you not a "stat" and chemo has helped to prolong their lives despite the anti- chemo agenda posted by people here.
Question to all, when the need to discontinue comes, would you rather hear it from your own health team or from members of your health team? Or you do want the be told over and over again you chemo is futile and not prolonging your life?'
Also should this group focus on end of life issues? Or should we be celebrating our successes ?
Steph - 22 Feb 2007 16:08 GMT >> I agree with you Ian, though I understand where the bleak approach comes >> from. I have seen to often that the last few months of someones life [quoted text clipped - 11 lines] > helped to prolong their lives despite the anti- chemo agenda posted by > people here. Speaking for the "majority" now, Alex? Do you think that what people "feel" about their treatment trumps the truth? There is no "anti chemo" agenda. Only a "go into treatment with all the facts and your eyes open" agenda.
> Question to all, when the need to discontinue comes, would you rather > hear it from your own health team or from members of your health team? Or > you do want the be told over and over again you chemo is futile and not > prolonging your life?' Only if it's the truth, but I guess that doesn't matter to you.
> Also should this group focus on end of life issues? Or should we be > celebrating our successes ? We celebrate them all the time. But you can't happy-clappy away ignorance which leads to costly (both in terms of money and side-effects) mistakes based on unrealistic expectations.
starfleet - 22 Feb 2007 16:45 GMT alex schreef:
> Also should this group focus on end of life issues? Or should we be > celebrating our successes ? > > This group should offer space for both.
Anne
J - 23 Feb 2007 08:50 GMT > alex schreef: > > [quoted text clipped - 4 lines] > > Anne Has and will continue to [exceptions early breast and prostate cancer and those same who continue on hormone therapies]. They can celebrate their successes and/or compare their treatments and/or side effects on their respective newsgroups. alt.support.cancer.breast alt.support.cancer.prostate J
alex - 19 Feb 2007 15:06 GMT > CONCLUSION: The perspective of the patient is different from that of a > well person. Patients are willing to undergo treatments that have small [quoted text clipped - 7 lines] > what they would consider a good choice, would assist informed decision > making. Wow you are fixated with end of life issues.
On article cited came from Medicare claims which are adminstrative data that is deeply flawed. Another was a literature search, and none where generated from a case control study.
I would suggest if you feel the need to assist people with end of life issues, you get proper training.Mininum training would be a volunteer training program. In the US if you choose to volunteer at a hospice or hospital you have to go through some training.
http://www.hospice.on.ca/faqs/faqs.html
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