I remember when Mrs. Waltz* was diagnosed with metastatic breast cancer. She had only felt some back pain which she attributed to her gardening. It had gotten worse over time and would wake her from sleep occasionally. Yet, it was only when I asked, “Is there anything else you want to talk about?” that she mentioned it. “It’s really nothing—but, my back has been bothering me.”
This led to an X-ray and a bone scan, and then a biopsy, before the diagnosis was made—metastatic breast cancer, involving multiple bones. A staging work-up showed no other evidence of disease. I had talked with her about what this means—that her metastases signified that her cancer was no longer curable, but that it continued to be treatable. We talked about bisphosphonates (to maintain bone strength) and of cancer treatment options. I outlined options—endocrine therapy (her tumor was hormone receptor-positive) and chemotherapy. She had understood everything up to that point, asking questions for clarification. I summarized it all by stating that whatever anticancer treatment we did, it would be palliative. Her next question was the one that sticks with me after all this time.
“Wait—palliative cancer treatment? Is that what you’re talking about?” she asked. “What is that supposed to mean to me?”
It brought to mind an ongoing conversation I was having on Twitter with others, including Dr. Charlotte Chamberlain. It had started after I had tweeted out this picture in response to a question about how palliative care relates to cancer treatment:
Charlotte had questioned the juxtaposition of “curative” to “palliative” therapy."
For someone with a terminal or progressive condition, the goal of treatment isn’t cure,” she had tweeted to me separately. With that, I was again reminded that the interest and the issues regarding the assimilation of palliative care into “medical” care was one that we dealt with across oceans.
Here is what Charlotte had to say:
As a palliative care and public health doctor who is researching access to “palliative chemotherapies” in the United Kingdom’s National Health Service, I have some strong views on how the language we use as doctors can lead to misunderstanding and ultimately, distress for patients. A friend told me recently that her uncle had been told that his lung cancer was “contained.” “That’s good, right?” she had said. “Contained” could have a multitude of meanings for a lay person, including visualising a cancer boxed up and managed for life, much like other chronic disease, such as diabetes. My friend’s uncle died a month later, leaving an angry family because “contained” to that oncologist had meant that the last cycle of chemotherapy had transiently stopped disease progression— not that it would be “contained” indefinitely.
Miscommunication in medicine is not new, and there is a wealth of literature describing the apparent “mis-sense” communication that can occur between what an oncologist has told a patient and what a patient has understood. There are even recorded transcripts of consultations between clinicians and patients which find that the oncologist didn’t say what they thought they had said and that the patient did not understand what the clinician had hoped they’d understood!
So how do terms like “palliative chemotherapy” further muddy the waters? Firstly, in the UK, patients are often given the option between palliative care and active treatment during their cancer journey. If active is chemotherapy, surgery, radiotherapy, and all the bells and whistles of acute hospital care, then palliative sounds very much the “inactive,” i.e., “inert” option—which is not the case. Palliative care patients have astounding amounts of “active” management: drains, stents, orthopaedic procedures, bowel resections, and so on. So what distinguishes these procedures as palliative, rather than “active”? I argue that they are both active, but some are curative and some are not.
Medical advances in pharmaceuticals have out-stripped the terminology, and there has been an explosion in so called, palliative chemotherapies, or treatments that do not cure, but are intended to increase survival and may improve or control symptom progression along the way. Chemotherapies are more challenging for patients to understand since there is a transition point where a chemotherapy can change from a “potentially curative” treatment (e.g., neo-adjuvant) to purely “palliative.” When the treatment appears the same, it is understandably difficult to communicate that the goals of care may have changed.
Are drugs that extend life, but also significantly improve quality of life “palliative”? Some of these drugs, such as enzalutamide, still have anticancer effect, so some would argue they are not palliative. But how do they compare with treatments that are done purely for palliation, such as radium 223 dichloride, which can ease pain from bony metastases, but, while not an anti-cancer treatment, can also be associated with gains in survival by as many days/weeks/months?
I think that for some patients living with advanced cancer (or any other incurable illness), the goals of these treatments are not being clearly communicated, to patients or non-oncologists in terms that allow for the individualization of treatment based on the particular patient’s goals. Is quality of life or length of life that patient’s main goal? Indeed, where does each patient draw a line in the trade-off between quality and quantity?
As an oncologist, I believe the administration of chemotherapy in patients living with active cancer is not out of place with the goals of palliative care. Given the ever increasing understanding of molecular targets, of the drivers of disease progression, and the heterogeneity of human malignancy, which has ushered in the era of targeted treatment, the reality of the patient with cancer has been drastically changed. For some, palliative chemotherapy can be synonymous with life-extending treatment.
Still, I will admit to a bit of discomfort when one talks of cancer treatment for advanced or metastatic disease as “palliative.” I am keenly aware of the toxicity of our agents (both chemotherapy and targeted treatments), and for some patients, the toxicities can be quite severe. When the patient has little in the way of symptoms, turning the treatment into something worse than the disease itself, seems to me, to be quite the opposite of the stated goals of palliation.
As I exchanged thoughts with Charlotte, I looked back at my career and to patients like Mrs. Waltz, and I realized that most of the patients I had treated for metastatic disease had not described their choice to undergo chemotherapy as palliative. Rather they underwent first-, second-, third-, and for some, even later lines of treatments because they had hoped that it would prolong their life. Some were willing to sacrifice the increased toxicity risks for the chance to make it a little longer—whether to see a grandchild graduate, a daughter marry, or simply, to make it to the next family reunion. Motivations are certainly different, but ultimately, I don’t think many patients buy into the idea that cancer treatment provides symptomatic relief, or prevents cancer-related symptoms. They were too focused on living, and managing the side effects of treatment—some of which were quite significant. Indeed, it may have set up a barrier to referrals for palliative therapy by setting up assumptions for our patients—that Palliative Medicine is the specialty related to the delivery of hospice.
So, where does that leave us? I’ll let Charlotte continue:
Palliative anticancer treatment is active therapy, and the use of the term “palliative” in this context implies that “we” have not given up on our patients. I agree with Don, that its use for patients with advanced cancer meets the defined goals of palliative care as active treatment that, as defined by the World Health Organization, can “enhance quality of life, and may positively influence the course of the illness.” Still, I am left wondering, if anticancer treatments are intended as palliative, then why aren’t palliative care consultants prescribing them?
The answer lies in closer working between oncologists and palliative care from the point of a terminal diagnosis (and sometimes before) so that terminology does not become a barrier in an honest conversation. Let’s start talking about “goal-orientated care” for all patients—we need to differentiate life-extending treatments, from curative therapies, without using the phrase “palliative” that has other important meanings (see below). We also need to make plain when the priority is quality, over quantity— for both patients and providers. I think having this level of understanding will require more honest conversations from all clinicians.
An adjusted model of care, focussed on goals rather than labels.