by Barbra Williams Cosentino
If your doctor said, “I’m very sorry, but your cancer is terminal,” you’d obviously be devastated. What if she then added, “The prognosis is that you have about six months left, but with treatments we can hopefully give you two or three extra months,” would you jump at the chance?
It’s quite likely that, for most of us, the answer would be yes. No questions asked.
Mostly, we’d be so relieved at the idea of living longer – maybe another Christmas or a chance to see a granddaughter’s ballet recital – that we would do whatever our doctor suggested.
Maybe we shouldn’t.
The Common Sense Oncology (CSO) Movement, launched in April 2023, is a global grassroots initiative that strives to modify some traditional paradigms of cancer care, with an emphasis on prioritizing outcomes that matter most to patients.
Christopher Booth, MD, a medical oncologist at Queen’s University in Kingston, Canada and co-founder of CSO, has said that “Compassionate care is at the core of what we do,” and that physicians should work hard to help patients live longer while enjoying a good quality of life, which is what studies show we want.
Booth writes that it is important to note that a number of new treatments approved by the U.S. Food and Drug Administration do not necessarily help people to live longer or better lives.
Especially in the past decade, Booth has said, with the introduction of many new types of immunotherapies and new knowledge about tumor biology, cancer care has sometimes gone astray from the goal of “meaningfully” improving patient’s lives, with oncologists encouraging treatments even though the odds of extending life or having a real impact on a terminally ill patient is very small.
And, conversely, treatments that have been proven to provide significant benefits are not always accessible because of issues with availability and cost.
It is a challenge for oncologists to balance hope and reality when discussing potential treatments and prognosis.
The Impact of Treatment Advances
Advances in prevention, diagnosis, surgery, radiotherapy, drug therapies and personalized medicine have led to improved survival and quality of life for many. Because of this, cancer is often viewed now as a chronic disease in which years of quality living, even with some recurrences necessitating further treatment, are possible.
But sometimes, the clock starts ticking more quickly, and it seems that no matter what new things are suggested, nothing is really making a difference.
In a phone interview, Arif H. Kamal, MD, Chief Patient Officer of the American Cancer Society and an oncologist and palliative medicine specialist at Duke Cancer Center in Durham, North Carolina, said that there are two schools of thought in the cancer world.
“Some argue that oncology’s primary job is to keep people alive, to have more days versus better days. In that conversation, chemotherapy is one of the most important tools in the clinician’s toolbox,” he noted. “Others of us believe that the art of oncology entails facilitating conversations to elicit patients’ goals, values and preferences as to how they live out whatever remaining time they may have. These exploratory discussions can be tough due to time constraints and because of the vulnerability and complexity of feelings that can arise, but should be a crucial part of cancer care.”
Kamal says he frequently asks his patients what a good day would look like to them. For one person, it might mean having the energy to throw a ball around and then go for an ice cream cone with a beloved youngster without battling bouts of nausea or vomiting. For someone else, it’s about curling up on the couch with a partner or spouse and binge-watching “Law and Order” reruns or the latest Netflix series.
Many drug treatments, some used in clinical trials and some in standard usage, (whose downsides can include unpleasant side effects, risks and toxicities) delay or even reverse tumor growth on a CT scan – usually measured as progression-free survival (PFS) – but may not be correlated with improved overall survival.
Along with physical effects, toxicities may include “time toxicity,” when treatment is so frequent, intense or debilitating that there is little time or energy available to enjoy time with family and friends or engaging in favorite activities, as well as “financial toxicity.” Especially with oncologists whose core belief is “preserve life at all costs,” there may be little discussion of the above factors, and patients may not realize the number of choices they have.
A 2010 article in the Journal of Palliative Medicine, which elicited physicians’ responses to published statistics that almost 20% of advanced cancer patients receive chemotherapy within two weeks of death, found that 90% of the respondents viewed this in a negative light.
Expressing Your Wishes
Some of the oncologists surveyed expressed ambivalence and even despair that end-stage patients and their doctors push for continued treatment when there is an absence of proven benefit. Many believed there is a time when palliation and comfort care, rather than cure, needs to take center stage.
Many also mentioned the influential role that pharmaceutical companies play in conducting clinical trials and marketing drugs both to health care providers and to patients, and the sad reality that the goal of improving and lengthening the lives of patients and that of making a profit are often not aligned.
More recently, the Common Sense Oncology movement has pointed out that industry’s control of the research agenda has created a system mainly focused on new cancer medications at the expense of investigating new approaches to surgery, radiotherapy, palliative care and prevention.
Kamal says, “Patients desperately want their oncologists to like them. They want to be seen as ‘good patients’ and are afraid that if they refuse treatment, pause treatment or even stop once they have started, their doctor will be angry with them or disappointed.”
Patients hesitate to bring up concerns about personal, relationship, sexual or financial issues, thinking that the oncologist will not be interested in hearing about them. According to Kamal, “I tell my patients that ‘I will take good care of you no matter what decisions you make. You cannot do anything to disappoint me. I will only be upset if you don’t tell me what I need to know that will allow me to help you in the way that you want to be helped.'”
Patients may also be on the fence about continuing treatment but don’t want to disappoint their family members who may be encouraging them to do everything to stay alive. “When we can help that family and patient to express their wishes with the language of love, that can be a beautiful moment,” says Kamal.
In August of 2023, researchers, academics, patient advocates and cancer care specialists from around the world contributed to a seminal article entitled “Common Sense Oncology: Outcomes That Matter” which appeared in the Lancet Oncology journal. This laid the foundation for new, improved and, some say, more humane management of metastatic, end-stage disease.
More on the CSO Movement
The CSO movement focuses on three main issues, which they call the pillars. These are evidence generation, evidence interpretation (helping clinicians to better analyze the results of clinical trial data) and evidence communication to improve the public and policy makers’ understanding of cancer treatment options.
The CSO Movement’s guiding principles include:
- Access to quality cancer care is a basic human right and no patient should ever be denied access to treatment because of financial issues
- Patient and societal needs should drive cancer research and delivery of care
- The involvement of patients and the general public is essential when making policy decisions
- Recommended cancer treatments should meaningfully improve patient survival and/or quality of life
- There should be shared decision making between patients and their oncologists which should be responsive to patient values and grounded in evidence-based medicine
- Patient-centered care should include timely integration of psychosocial oncology, survivorship and palliative care.
What You and Your Family Need to Know
Patients and family members should feel comfortable asking questions about treatment decisions. These questions would look very different at the time of initial diagnosis or treatment than they might later in the cancer journey if, sadly, previous treatments have stopped working or the cancer has spread or worsened. Initial discussions will focus on understanding what type of cancer you have, what is the stage, and is the cancer “curable?”
Questions throughout your cancer experience might include:
- If treatment will help me to live longer, what might that mean – weeks, months or years?
- What side effects might I experience from the treatment(s)?
- How will treatment affect my day-to-day life in the coming months? Will I be able to travel? Would I need to be hospitalized, go for frequent chemotherapy infusions or daily radiation? If I go for surgery, how long would the recovery period be?
- Can you help me to determine the risks versus benefits of treatment so I can make the best possible decisions?