Chemo in palliative perspective

When counseling patients and families about end-of-life care, I try to focus on a simple, clear standard.  Knowing that events are overwhelming and complex, I say,  “Look at each treatment, each action and each moment and ask; How does it improve quality of life?”  My goal is to reduce the choices during a chaotic time of life to the simple goal of comfort.

For example, most families are very concerned about nutrition and worry that the person they love may “starve to death.”  I tell them that given the presence of a fatal disease, it is unlikely that eating will lengthen the patient’s survival and by stimulating the cancer, eating may even shorten life.  Rather, the purpose of eating should be the quality of that moment.  Families can rely on the simple standard, is the person hungry; do they want to eat?  Something that tastes good may not change their body or the disease, but is the ultimate “comfort food.”  Therefore, if the patient only eats a little or is not interested in food at all, that is OK, because then food is not a quality issue.

Another simple example is the long list of medications that burdens many of us, especially as we get older.  For a patient receiving hospice or palliative care, that list should be reviewed by the same criteria; does it help quality of life?  For most patients; pain medications, antidepressants or anxiety medicines would be “yes,” cholesterol and blood pressure medicines would be “no,” and blood thinners, “maybe.”  So, what about chemotherapy?

I think it is crucial to understand the purpose of chemotherapy in each patient. We should endeavor to put chemo in the perspective of that person’s disease and goals.  I suspect that one of the problems we have with end-of-life care, is the failure to explain to each patient what anticancer drugs can or cannot do.  Studies show that a majority of patients receiving chemo for incurable disease believe that the treatment may still cure them.

Of course, in many diseases, chemotherapy may in fact result in cure. Stage IV Testicular Cancer is usually cured with chemo.  Hodgkin’s Disease, acute leukemia, early stage breast and colon cancers, localized cervical cancer and many others are treated with medications, chemotherapy, with the goal being to get rid of the cancer forever or at least control it for many years.  Usually these patients are willing to accept side effects, toxicity and a general decrease in quality of life, at least during chemotherapy, in order to be cured of the dread disease.

What about diseases which we often treat with chemo, but cannot be cured?  Common examples are lung cancer, pancreatic cancer, advanced breast and colon cancers and metastatic prostate cancer.  If these diseases are fatal, why do we treat them with drugs, at all?   I propose that the failure to answer this question confuses patients and results in far more complications and suffering than is necessary or reasonable.

When giving chemotherapy, or any other anticancer therapy, when the cancer cannot be cured, the goal is palliative.  By that, I mean the goal is to decrease pain, increase quality of life and perhaps help the patient to live a little longer.  The goal is not cure.  If chemo is just that, a comfort and quality tool, then each patient and family, when they are offered chemotherapy, should hear a version of my first words;  “Look at this treatment, each dose of chemo and each visit to the office and ask; How does it improve the quality of life?”

Having this conversation at the start, not just rushing into the first and second and even third course of chemo, week after month of toxic therapy, would help families set realistic goals and have reasonable expectations.  Just like everything else, that the patient receives to treat the disease and its symptoms, families and patients should have the honest opportunity to balance personal goals with side effects and perhaps decide whether the time that therapy takes from day-to-day life is justified.

Doctors have a way of dominating medical care and taking control from patients and families.  Only families can judge how the sacrifice of therapy affects the quality of each patient’s life.  By viewing chemotherapy as a potential comfort measure, it would be easier to makes decisions during those final battles.  Each person must hear, “we can help you decide, but it must be your choice. And one choice is to not do treatment at all.”  Empowered by this knowledge each patient and family can better find quality during one of life’s most difficult journeys.


  • IBS
    I had to have 2 rounds of chemo to show my children I'm at least trying. I knew my body would hate it. It was horrible so I quit. In June, I became a palliative patient. No more pain in my gums and teeth My left eye that has a Nevus in it felt as if there was a web in it with a bug. I don't see as well. That was from the thank you. I have no coughing This coming Feb. will be two years, and I'm back to creating. It's a place I can go and disappear from problems. A palliative patient dx with: Lung Cancer stage IV, Non cell,Adenocarcinoma MGUS Neuropathy Systemic lupus Fibromyglia
  • Angela Evans,R.N.
    This is a very different way of looking at cancer treatment. I have not thought of any cancers as being incurable if caught early enough. This seems to be what you are suggesting. Is this because some cancers like ovarian cancer tend to be diagnosed when it is too late for a cure?? I love your idea of everything you do being done through the lens of "Does this improve the overall quality of life for my pt.?" I truly wish more docs would take more time to talk to their patients like it seems you do. It also seems with EHR,some doc's spend more time interacting with the computer than they do with their human pt. in the room.
    • James Salwitz, MD
      Many cancers are curable if caught early. Stage 1-2 breast cancer or colon cancer is a common example. For them the goal of chemo is permanent cure, therefore even side effects that for a short while cause major problems with quality are acceptable. However, once a cancer has spread and cannot be cured, than any chemo is palliative ... its goal is to provide quality and perhaps extend life. I think that patients need to understand clearly what is the purpose and limits of any treatment, especially something difficult like chemo. jcs
      • Liz
        And I would agree that many people don't understand the purpose of chemo once things aren't curable. I know that I initially struggled with that with my non-hodgkin's lymphoma and treatment decisions. Although I had B symptoms and was losing a lot of weight, I initially didn't understand that at some level it didn't really matter in the long run which treatment I chose as long as I chose something with rituxan… it wasn't going to influence survival in the long run, only how I felt in the short run and possibly time until progression and that a longer time until progression wasn't going to change overall survival length of time - I really had trouble wrapping my cure oriented brain around that. My family still doesn't get that. I have my fingers crossed that this won't cause family conflict in the future. I watched my sister's mother in law continue chemo (ovarian cancer) up through two weeks before she died. My aunt decided to stop it, because of how she felt, part way into chemo after a recurrence (stage 3 ovarian) as it was only shrinking some of the tumors and she felt like crap. She died 4.5 months later. Another aunt did chemo though two recurrences and chose not to with the third (ovarian) and died 6 or so months later. In each case different choices. I don't think my sister's mother in law (or my sister or her husband's family) understood that chemo wasn't going to do anything other than perhaps buy short periods of time. I know a friend of mine's mother has stage 4 lung cancer. I tried to talk with my friend about how chemo won't cure that and that her mother is so debilitated from chemo that perhaps they should rethink what the plan of action should be, talk with palliative care people and at least for informational purposes talk with hospice. They (husband and kids, her mom is silent on the issue) are still taking how she will beat this because she has a "good attitude" and everyone is praying so that God will intervene. Sigh. A neighbor's husband couldn't let his wife go (metastasized breast cancer with mets to the brain and elsewhere, an 8 year old and 12 year old). He insisted on putting a peg tube in when she stopped eating because she was no longer hungry. She told me that she wasn't going to fight her husband on what he wanted her to do because he could not accept she was going to die and she didn't feel she could make his life harder than it was already or was going to be once she died (e.g. feeling there was something else they could have, should have done). Personally I hope I am never in a situation where I feel like I have to make decisions that to do things that I don't want to do but my family needs me to do because of their needs. I think that would be really difficult.
    • Liz
      Angela - My third cancer has no cure and was caught early (one of the indolent non-hodgkin's lymphomas). While one newer chemo drug lengthens life a handful of years, for the most part the various chemo combos cut back on symptoms, shrink nodes, etc. but do not change your overall survival in any significant way (with the exception of the aforementioned drug but even then that is not a cure). Despite being in apparent remission the cancer continues to progress. As a result treatment consists of watch and wait, chemo when things reach certain points, remission, relapse, and at some point you no longer respond to chemo. Some of the chemos have some pretty unpleasant side effects (I had to quit my chemo 2 rounds early due to bone marrow and liver damage, however I am more or less in remission - nodes slowly growing but nothing bad enough to treat again yet). On the other hand my breast cancers (both sides) are in remission, I hope cured. One I am 10.5 years in remission and the other is almost 4 in years remission. Trouble is with my particular markers breast cancer can recur even 20 years later (although the odds of that aren't all that high)… so on the one hand things appear fine, on the other hand I could have a nasty surprise sometime in the future, that is if I live long enough with the other cancer.
  • [...] Here is a link that talks about the importance of comfort food, particularly for those battling a life threatening disease.  [...]
  • meyati
    From day one of the pathology lab's conformation of an incurable aggressive cancer, I was told that chemo doesn't work at all. Even the ACS site says this if you dig enough. They all say that a patient gets a temporary remission from surgery or radiation. Then they try chemo, then radiation. I cannot understand why they use chemo at all-unless it's an experiment on the "down-low". As Spock would say-it doesn't compute. I ask oncologists, my ENT about it in this language, and most just hang their heads or look away. I've asked what benefit chemo would have. They say absolutely none. My current head oncologist said that it doesn't help in any way-it's just a last resort. I told him that I'll just skip it. If they want to kill my pain, they can give me a pain killer. Right now, I seem to be in remission. I'm 71, so it's completely possible that I could die another way. I have a great heart, good kidneys and liver. If you've seen the news about police in New Mexico, especially in my city, everybody knows that I probably have a higher chance of being killed by the police.
  • Mike
    Indolent NHL is one obvious example, so I will chime in. Survival statistics often don't tell the entire story when it comes to newer treatments. Althouth Rituxan was FDA-approved in narrow applications around 1997, it took awhile for this -mab to be broadly utilized. Study results vary, but don't look now--- average survival for follicular NHL has advanced from around 7 years to 17 years during the Rituxan era. Not to mention, the average age for dx in this group is likely at least 60, so average survival is possibly higher yet for younger survivors. Many may not understand, but in addition, those who feel well can remain productive, independent, employed, insured, and well-positioned for future treatments as they become necessary. Finally, in a chronic disease, it's all about linking treatments together to cover a period of many years. More about getting the most from each card played before going back to the table. Length of remission is not as critical as finding treatments that work. I only wish clinical trial research, FDA, treatment facilities, and insurers would understand this. For example, trial results for GA-101 may be only slightly better than Rituxan, but the real value is that GA-101 (or other non-chemo options) can buy more (quality) time. Sooner or later, Ibrutinib and other targeted oral meds should be able to carry the day. Not too bad for what was supposed to be just palliative treatment.
  • IBS
    I had given a larage amount for blood research for blood cancers. I gave it to a private doctor that researches this because it runs rampid in my family. Remember not to stress. If you need medication then ask your MD. Eat lots of veggies. Hold your lil children or grandchildren. A smile or gurgle brings my body total love. I played soccer with my 3 yr old grandson too. (WOW, I was tired!) I am still in the process of making "Mom's Loving Memories" out of their camp trunks for each child. Your kids would love it. Make sure you all have a DNR. It must include Blue codes, tubes, artificial breathing, etc. You may just want to pass with constant morphine. I was thinking. We die, probably with pain, yet the killers, etc in jail, die with an injection. What's wrong going back to the electric chair for them and we get the injection for pain?
    • meyati
      I agree with you- but they don't give a comforting overdose of morphine to those being executed-I guess the DEA thinks that will make them dope addicts in the next world. There have been instances where the death cocktail didn't work, and the person being executed suffered excruciating pain and other problems. I just mad at doctors that get mad at me, when I tell them that I want quality of life- how can I have quality of life with this treatment plan? I've been told that I'm not looking at the big picture. Hey, they are the ones that said it was incurable-not me.
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  • D Someya Reed
    In my opinion, chemotherapy is always palliative regardless of cure or incurable. I don’t think there should be such a distinction made between cure vs. incurable and chemotherapy. What confuses most patients and families are the differing definitions by doctors as to “cured” and cancer becoming “cancers” based upon type and location. Doctors have a variety of definitions of “cured” for cancer(s) mostly based on how they obtain successful outcomes. For some doctors: Cured = remission Cured = extended remission Cured = surgery Cured = chemotherapy Cured = radiation Cured = stem cells Cured = incurable (i.e., there is no known infallible cure for any cancer) The general public has one definition of cancer…I’ve got it! The general public has one definition of cured…It’s gone! This is the same perspective (for the doctor) that no one needs to know how to build a car in order to drive one. How many times have you heard the expression “mumbo-jumbo” used by someone you know when describing what their doctor just told them? And not that that’s a good thing. The reverse is more often true of quality of life. Most doctors have a more singular definition of quality of (their patients’) lives and equate any reduction in that quality of life as acceptable in pursuit of their individual definition of “cured.” The general public, on the other hand, has as many definitions of quality of life as there are patients. To integrate “quality of life” into the early discussions between every doctor and patient then do everything possible to get as close as realistic to those goals would be fantastic! Quality of life is quality of life whether cured or not.
    • meyati
      In years past, a person wasn't cured until 7 years of remission, without new cancers popping up, or a resurgence of the old one. That was more honest, yet they say they are more honest now. When I finished radiation, they wanted me to ring a stupid ship's bell. On TV ads, they have stupid idiots ringing the bell and crying, while saying, I'm cured. They wanted me to ring the bell. I refused to. I told them that ranging the bell in the old days usually meant the ship was on fire. Since the 1920s, ships had sound systems for the bells for general quarters and the bells sound different. I'm not going to offend Poseidon and the other gods of the sea and Navy. I have it bad enough now.
      • Liz
        Of course "cured" depends on the cancer and how cured is being defined. And what you are told is also dependent upon the specific doctor, how current they are staying, to what extent they like giving hope (even unrealistic hope in some cases), good news, realistic prospects and bad news… A friend of mine died the other day after a recurrence 12 years after a bone marrow transplant and by all current measures and research... should have been "cured". Obviously he was an exception to the rule (and there are always exceptions which is just how statistics works, it is not someone's fault statistics give "chance" rather than "certainty"). Ringing of the bell… never heard of that. Only recently heard of people saying, "doing the snoopy dance" for you when someone is in remission or gone long enough to be considered that it would be highly unlikely that it would come back.
        • meyati
          It's obviously a local thing to give good TV advertising and false hope. It's wrong for these people to think that they are cured-just because they survived a chemo and/or radiation treatment. I told the doctor and medical staff what I think of it. Not as them lying, you can only argue so much, before you shoot yourself in the foot or cut off your nose for spite. I told them that having ship's bell used like this is really bad luck. This is an MD Anderson clinic that's not in Texas. I don't know if it's an MD Anderson thing or something local. They wanted to sign me up for a bell ringing in the last week of radiation. I'm coming up for my first annual check up-even if I go 7 years without anymore cancer problems, I don't want to ring the bell, and bring the wrath of Poseidon down on me for having hubris.
          • Liz
            Not MDA Houston - no bell there.

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