A small group of cancer specialists and patient advocates from around the world are gathering in Kingston this week to launch a global movement aimed at providing less treatment to patients.
While it may sound counterintuitive, the inaugural Common Sense Oncology Symposium is designed to recalibrate the delivery of cancer care around patient needs and desires so that they can make the best choices about how they want to approach their disease and spend their time.
Christopher Booth, an oncologist at Queen’s University and co-leader of the movement, said all too often, cancer is defined by battle metaphors and an endless array of treatments, without enough attention being paid to honest discussions with patients about whether the treatments will make a meaningful difference and what harms they might cause.
“The essence of true cancer care is compassionate care,” Dr. Booth said in an interview. “If the treatments aren’t going to help or are not very effective, it’s really important for the patient and the family to hear about it, as difficult as those conversations can be.”
Dr. Booth and his Queen’s colleague, Bishal Gyawali, who is also an oncologist, decided to hold an in-person meeting to discuss these issues and were floored when a select group of participants from around the world immediately agreed to come on board. About 30 oncologists and patient advocates from 15 countries will be at the event, which runs Monday to Wednesday.
Michelle Tregear, a breast cancer survivor and chief programs officer with the National Breast Cancer Coalition in Washington, said she’s attending because she believes more patients – and clinicians – need to understand the potential benefits, as well as the limitations and risks, of medications and other interventions. She, like others in the movement, wants more emphasis to be placed on the goals that matter to patients, things such as improving quality of life and, in the case of terminal illness, making the time that remains meaningful.
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She recalled the experience of her father, who died of metastatic lung cancer a year and a half ago and who underwent gruelling treatments that made him feel unwell and experience a host of side effects, including a stroke.
“Many cancer patients will do whatever they can to get the newest drug that comes out because they think it’s going to be beneficial,” said Dr. Tregear, who holds a PhD in experimental psychology. “A lot of it is profit driven and motivated by profit and not necessarily the patients’ interest.”
Rachel Koven, who lives in Kingston, will be attending the symposium as a patient advocate. Ms. Koven, an epidemiologist by training, lost her husband, Ken, to cancer and wants to see the narrative shift away from treatment at all costs to one that’s focused on the patient’s wishes.
That doesn’t mean patients should reject treatment – Ms. Koven said she gained an additional nine months with her husband because of a treatment he underwent shortly after his diagnosis. But those interventions shouldn’t be the only thing that’s emphasized, especially when the medications being offered may not actually make the patient feel better or live longer.
“We’re just so focused on treatment as the only option and it doesn’t make sense because there are other options,” Ms. Koven said. “But a lot of the other options involve difficult discussions.”
Dr. Booth said it’s important to have more of these discussions, especially when patients have a terminal illness and have to make decisions about the best way to spend their remaining time.
“In many cases, it’s easier to prescribe a cancer medicine near the end of life in some ways than it is to have the really deep and difficult but important conversations about end of life.”
The meeting will focus on bringing this idea of patient-centred care into the forefront by improving doctor-patient communication, encouraging the use of treatments proven to provide meaningful benefit while discouraging the use of those that don’t and by supporting research that is aligned with patient goals around better quality of life.
“This is very much not the typical narrative,” Dr. Booth said. “We want to take these ideas and take them from being counterculture within our field and make them the mainstream.”