Curative, Life‐Extending, and Palliative Chemotherapy: New Outcomes Need New Names

FormerMember
FormerMember
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I thought forum members would find this article interesting as there seems to be confusion surrounding terminology when applied to different stages of treatment and it’s implications.

Curative, Life‐Extending, and Palliative Chemotherapy: New Outcomes Need New Names

Although chemotherapy is commonly categorized as being either curative or palliative, these terms no longer fully reflect chemotherapy's intended uses. This imprecise terminology obscures the reasons why a cancer patient might be willing to endure the potential toxicities and side effects of treatment as a means to a desired end. To clarify the intended use, we propose renaming the categories of chemotherapy so that each descriptor more accurately reflects its expected outcomes and contemporary goals of care.

Curative Chemotherapy

Curative chemotherapy is chemotherapy administered with the goal of achieving a complete remission and preventing the recurrence of cancer. In the case of newly diagnosed Hodgkin lymphoma, testicular cancer, and acute lymphocytic leukemia, the term curative chemotherapy accurately reflects the expected outcome, that is, cure, and the reason for its utilization. This characterization also encompasses chemotherapy's use as adjuvant chemotherapy following surgery for localized breast cancer, colorectal cancer, or lung cancer. Use of the term curative chemotherapy thus appears unproblematic.

Palliative Chemotherapy

By contrast, oncologists typically use the term palliative chemotherapy to refer to any chemotherapy administration that is not curative [1]. Consequently, the term is defined by what it is not, that is, curative, rather than specifying the intended palliation. Wikipedia explains plainly that: “Salvage chemotherapy or palliative chemotherapy is given without curative intent, but simply to decrease tumor load and increase life expectancy.” Others have defined palliative chemotherapy as “…treatment in circumstances where the impact of intervention is insufficient to result in major survival advantage, but does affect improvement in terms of tumor‐related symptoms…” [2]. Use of both palliative chemotherapy and salvage chemotherapy thus appears problematic.

Salvage Chemotherapy

Salvage chemotherapy was, long ago, first understood to be a form of curative chemotherapy, particularly for hematologic malignancies, as when patients have not responded to, or progressed on, first‐line curative therapy for Hodgkin lymphoma [3], [4]. However, its current usage is ambiguous since it has also been used as a synonym for palliative chemotherapy, as in the definition in the prior paragraph above in Wikipedia. Further, its current usage, even for curative salvage, has generally been supplanted by other terminology, specifically by reference to the lines of therapy, that is, second‐line or third‐line therapy for patients who have progressed on first‐line curative chemotherapy. We, therefore, recommend that oncologists avoid using this term.

Palliative chemotherapy was first mentioned in the 1950s accompanying the first use of cytotoxic chemotherapy [5]. By the early to mid‐1960s, the practical application of palliative chemotherapy for solid tumors became routine [6], [7], [8], [9]. In those days, the term “palliative” was indeed focused on the reduction of pain and symptoms. There may have been a concomitant increase in survival, but in most cases this was relatively rare. Five decades later, the oncologist's armamentarium is broader and, in many settings, patient outcomes have improved dramatically. Oncologists, nevertheless, still dichotomize chemotherapy into “curative” and “palliative” even though these terms frequently do not fit with the present goals of care.

We object to the current usage of the term palliative chemotherapy because we do not believe that the intended outcome is palliation. The recognition of palliative medicine as a medical specialty has altered the meaning of the term “palliative” for patients and providers. The word has come to have a negative connotation, implying that the patient is near the end‐of‐life, thus equating “palliative chemotherapy” with “end‐of‐life chemotherapy.” We see two problems with use of the term palliative chemotherapy: (a) it may unnecessarily alarm patients who are not near death and (b) its use for patients who truly are at the end‐of‐life is misapplied because it is not necessarily prescribed for the purposes of palliation.

Life‐Extending Chemotherapy

The term palliative chemotherapy might have been appropriate in the era when life expectancy for most cancers numbered a few months, even with chemotherapy. But fortunately, outcomes have improved, in some cases dramatically. For many metastatic tumors, even if incurable, survival with chemotherapy and best treatment is now well over a year and frequently much more. Colorectal cancer survival often exceeds 24 months with 10% of patients surviving more than five years [10], [11]. Breast and prostate cancer patients with metastatic disease also survive years, frequently past 10 years. If chemotherapy is offered with the goal of prolonging life, but not preventing recurrence, that is, not curative, we would suggest, instead, the use of the term life‐extending chemotherapy.

Given the growing disconnect between names and expected outcomes with chemotherapy, we recommend a renaming such that the terms curative, life‐extending, and palliative chemotherapy correspond to the current outcomes expected to result from the administration of chemotherapy (Table 1). In our redefined nomenclature, curative chemotherapy retains its meaning as chemotherapy given with a high likelihood of improving a patient's probability of non‐recurrence. Life‐extending chemotherapy then refers to chemotherapy whose primary intent is to extend a patient's life for a meaningful length of time. The real challenge will then be to determine in each case what constitutes “meaningfully” enhanced survival. We recognize that every administration of chemotherapy may have this as its goal, but this would require evidence that the chemotherapy prescribed would provide the expected outcome in terms of “extra” life worth living. For example, if a patient were given chemotherapy to live long enough to witness the birth of a grandchild, rather than to palliate symptoms, we recommend it be called life‐extending chemotherapy. As we increasingly evaluate the value of chemotherapy, this will become easier.

Finally, palliative chemotherapy could resume its meaning as it had when it began—the use of chemotherapy for the primary purpose of palliating symptoms. Whether there are many circumstances where this can be justified anymore is a matter of debate and further discussion. The American Society of Clinical Oncology has issued guidelines discouraging such usage [12]. Our own study demonstrated that the use of chemotherapy in settings where there is no evidence to establish its benefit in prolonging survival often leads to a worse quality of life rather than to palliation [13].

Our nomenclature would clarify the intent of the chemotherapy to the patient (and family members and health care providers), provide an accurate and less demoralizing language for patients and, by reducing confusion as to the intent of treatment, promote informed decision‐making. In many instances, outcomes produced by chemotherapy have improved dramatically. The time has come for the terms used to describe chemotherapy to reflect the current goals of this type of care more accurately.

 

  • FormerMember
    FormerMember

    I had not come across any of these terms. This week doctor reduced my chemo tablets as, I understood, better to have good blood and platelet levels. Although chemo kills the bad guys, it kills the good as well. Feel less yucky.

    Does anyone know what type of leukaemia Clive James had ? He survived 10 years after diagnosis. 

    For me quality of life is also important. Not sure if I would want to extend my time if it just meant staying in bed feeling sick for longer. If they can extend active life that's great.

    Tessa

  • FormerMember
    FormerMember in reply to FormerMember

    Dear tessa, Clive James had B- Cell Chronic lymphocytic leukemia. I’m glad you found this article enlightening, I don’t think the definition of what these terms really mean is widely known so I thought it would be a useful resource for people in our situation. They classify life extending treatment as treatment that means you are well more than you are ill whilst taking it, which is a good way of assessing if it’s worthwhile continuing doing it.

  • FormerMember
    FormerMember

    Hi Jane 

    This is uttering fascinating - thank you for sharing it.

    When I was first told I had incurable cancer, the consultant’s words were along the lines of: “I’m very sorry. The cancer has now spread and that means it’s incurable. The only thing we can offer you is palliative chemotherapy when you start to feel symptoms.”

    I was, understandably, thrown into a tailspin by this. I didn’t have the wits about me to ask what she meant by palliative chemo. Rather, I assumed it meant that the chemo would be used to relieve said symptoms, whatever they might be. I left that meeting with the feeling that I was dying. I distinctly remember wondering how bad the symptoms would have to be to make going through chemo again look like a good option.

    I applied to the mortgage life insurance for a pay out under their terminal illness clause and they paid out on the basis that I had less than 12 months to live. That was over three and a half years ago. 

    Looking back, I think it would have made a considerable difference if the phrase “life extending chemotherapy” had been used instead or had I been told “we will do everything we can to help you live as long as we can”. It would, as the authors say, have provided a more accurate and less demoralising picture to this patient. 

    xx

  • FormerMember
    FormerMember in reply to FormerMember

    Dear daloni, I’m glad you found this article interesting. I think in the advent of life extending treatments the use of language is very important. I think any newly diagnosed cancer patient could benefit from reading this article so they could then contextualise any information given to them by their doctor. It was taken from a publication called “ the oncologist “ from the USA. The article was written in 2017. I’m going to give a copy to my palliative care doctor next week when I see him for my review and see what he thinks about it. When we are making our life choices we need to know as much as possible about our own personal circumstances and that includes the intention of any treatment we are receiving.

  • FormerMember
    FormerMember

    Hello and thanks for the article.I agree with the definitions.Just because somebody is stage 4 it doesn't have to mean to plan a funeral in 5 min or hospice care.I am 42 and I was told the bad news in May 2019.Have breast cancer spread to my lungs.Anyway my oncolostis have no empathy she told me can't do anything for me.When I left the hospital just wanted to jump from the bridge.She didn't say I wasn't terminal she actually didn't say anything.Well I have started chemo weekly Paclitaxel and I am stronger then before all my symptoms disappeared also scans showed me that everything is shrinking.So I am not going to plan any funeral.

    And also I don't like the idea that I have been forced to be contacted by hospice.Excuse me?except the cough I didn't have any issues.And I have my husband who looks after me.Anyway I have asked the hospice to don't contact me anymore.I don't believe they bring me any optimism to me and I want to be optimistic and not sad.

    Anyway lots of these oncologist I think should go for more trainings how to approach the patients and use proper definitions of their conditions because not everybody is the same even with stage 4.

    Thank you for the article I might show it to my very "empathetic and caring" doctor.

  • FormerMember
    FormerMember in reply to FormerMember

    Dear Janet, thank you so much for replying to my post, your contribution is very welcome and seems to confirm the need for oncologists to be more precise when talking to patients about their prognosis. I am so glad to hear you are stable and feeling well in yourself. As for being contacted by the hospice, this is a intensely personal decision. I chose to attend the crafting class once a week at my local hospice for emotional support. All the ladies in my group are still receiving treatment and some have been attending for a couple of years. We have a fun time together with lots of laughter and occasionally a few tears. The hospice isn’t just about end of life care and is nothing like you might imagine it to be, so even though you don’t feel the need to go there at the moment don’t rule it out. It has helped me through some difficult times and improved my quality of life.  Despite my own set of circumstances I’m leading a happy life and have a wonderfully supportive husband and adopt a positive attitude to my life whenever I can.

  • Hi Jane,

    Thanks for the information, it is very helpful and  as others have said, it would be good if oncologists offered it to people. When we are told we are incurable but treatable I suspect most of us have a mixed reaction. Often we have been through one lot of treatment for the primary and now here we are after a period of time with another diagnosis when we probably felt like we had eluded death before. Or should I say that is how I felt, and inevitably there was that sinking feeling about " can I face chemo again?" etc. And questions about "how long?" and all the other unknowns. Of course it settles, and once I began treatment and it was bearable, then eventually anything becomes normal and for me going to the hospital every week is what I do, and I dont really think about it much. However, I know I am in a good phase at the moment, and things can change rapidly and the next phase will need adjustment and will bring anxiety. Understanding the terminology will help with that, as long as everyone is using the same language.

    I completely get what Janet is saying about not wanting hospice contact, as I felt exactly that way when diagnosed 2 years ago. I felt a bit like I was being steamrollered to a "headspace" where I was not ready to go. I did not contact them, and still have not, but having been on this forum for a few months now, I feel like I could if I needed to and feel less anxious about it. So thanks for all the information and advice on here, it does really help ( sorry to be guilty of stating the obvious).

  • FormerMember
    FormerMember in reply to ownedbystaffies

    Dear ownedbystaffies, I’m glad to hear you found this information useful. I think doctors have a duty of care to make sure their patients understand the intention and implications of any treatment they offer them, when you have surgery you have to give informed consent so the same should apply to any other kind of therapy. I think the problem is medicine has raced ahead of the ability of doctors to communicate sufficiently the consequences of accepting certain kinds of treatment. As for the hospice my only intention has been to let people know the reality of what they do and how it has impacted positively on my life, it gives me the strength to carry on when I’ve had a  particularly stressful week at dialysis or am having unwelcome side effects from medication. It also gives my long suffering husband a break to do something for himself and for that I am truly grateful. 

  • FormerMember
    FormerMember in reply to FormerMember

    Morning  

    I also found this information very useful as it took me a while to navigate these waters.

    A year after surgery, chemotherapy & radiotherapy for secondary breast cancer I was told I was 'stable'.

    A throw away remark to my Consultant as I was leaving led to a brain scan which revealed skull and brain mets and the stage 4 incurable diagnosis.

    At the time my Consultant said he didn't think there was anything they could do as the tumours were inoperable, so as others have said, I began to plan my funeral. I was offered Gamma Knife surgery in Leeds which was successful, but further scans revealed high volume mets throughout my spine, ribs, pelvis and leg. In Jan I was considered stable again and struggled to get my head round that although it was short lived as a month later the scan showed progression to my liver. I started palliative chemo.

    I'm classed as terminal, was awarded full PIP and have had a settlement from my life assurance to pay off the mortgage.

    I had an emergency admission to hospital in July with pneumonia and pleurisy, and the Oncologist on the ward painted a very bleak outlook. He said the treatment wasn't working, I was very, very sick, far too sick to consider any other treatment and completed a DNR.

    Scans appear to show progression to my lungs and growth in the liver tumour, but my own Consultant agreed to give me the benefit of the doubt despite a big jump in the cancer markers.

    On Friday I was told my scans show signs of improvement and I'm stable for the first time since June. I am literally over the moon!!!

    I hadn't realised how much the Consultant in hospital had taken from me until I got it back, hope. I thought I was circling the drain and was o.k. with that because I'd already done so much better than expected, but feel like I've been thrown a life line and it's so exciting!

    Some of the information may seem like technicalities, but the way it's presented is also crucial.

    Yesterday was my birthday and my husband took me to buy a winter coat, yay me!  xx

  • FormerMember
    FormerMember in reply to FormerMember

    Dear tinalay, I think you have summed up precisely why the use of language is so important, it’s the reason why this article caught my eye. Individual prognosis seems to have limited value in the era of life extending medicines so it’s important for doctors not to be prescriptive when talking to their patients. I believe that knowledge is power for patients and I posted this article in an attempt to empower people in making their life choices.

    i am so happy that you are currently stable and embracing life once again, happy birthday from me, and button up that winter coat and keep yourself warm. I bought myself a Cossack style hat for the winter which is doing the business.