“There is a suspicious shadow on your scan.”
These are words no one wants to hear from their doctor and can often mark the beginning of a cancer journey. Now, imagine hearing these words while living with a severe mental illness. As part of that, you experience paranoia and delusions believing there are people out to get you. Learning there is a “suspicious shadow” lurking inside could confirm some of your worst fears and heighten your psychosis symptoms.
This patient example gets to the heart of the Cancer and Severe Mental Illness Project (CaSMIP), ongoing research led by Dr. Oyedeji (Deji) Ayonrinde, Associate Professor, Department of Psychiatry, who is also Clinical Director for Community Mental Health at Providence Care.
Cancer patients face unique barriers and problems when also dealing with severe mental illness (SMI), which includes schizophrenia, schizoaffective disorders, and bipolar disorder. These issues may prevent them from undergoing screening for common cancers or going through cancer treatment . This is a syndemic problem where one complex disease cluster interacts with another in a way that exacerbates the prognosis and disease burden thereby compromising someone’s overall health.
Dr. Ayonrinde has experience working with patients dealing with a cancer diagnosis on top of their mental illness. Through CaSMIP, his diverse team is reviewing oncology guidelines for the most common cancers (e.g. lung, breast, colorectal and cervical) and identifying how they present specific challenges or limitations to equitable cancer care for people with severe mental illness.
“We know that people with severe mental illness have much worse health outcomes than the general population with many dying 20 to 25 years earlier than their peers. They also have higher rates of obesity, heart disease, diabetes, and substance misuse,” says Dr. Ayonrinde. “We also know there exists a lot of inequity in cancer care among marginalized populations—that includes people with severe mental illness.” Individuals with SMI have about two to two and a half times higher mortality rates for common cancers than the general population.
For people living with SMI, navigating everyday life can be isolating and extremely difficult. Many experience cognitive difficulties, delusions, paranoia, hallucinations or disturbing thoughts, and this combined with their medication side effects can prevent them from engaging in or making good health choices. These conditions can also be exacerbated by stress which undoubtedly is present during any part of a cancer journey. “Many people know how challenging a cancer diagnosis is when you have health literacy and other resources, but you may never think of how much harder this would be if you were dealing with severe mental illness as well,” says Dr. Ayonrinde.
Pursuing equity throughout a cancer journey
From prevention and screening practices to intervention, treatment and recovery, Dr. Ayonrinde’s team has uncovered multiple points along the cancer pathway that can disadvantage someone with SMI. In terms of prevention, he explains that despite the prevalent use of smoking cessation programs and medications, these strategies are infrequently pursued in community mental health programs. “The association (between smoking and cancer risk) is so well established that the average person knows the benefits of quitting, but yet we continue to see many patients smoking excessively which increases their cancer risk,” says Dr. Ayonrinde.
A “digital divide” among people with severe mental illness means that many lack access to the Internet where you can learn about cancer or use screening resources, and only 14% of this population have access to videoconferencing capability. Dr. Ayonrinde explains that home screening techniques like the FIT test for colorectal cancer can have very long and detailed written instructions that can be difficult to follow if a person lacks the ability to concentrate due to their illness or medication side effects.
Compounding these equity issues is diagnostic overshadowing. This occurs when one diagnosis—like a mental illness—looms so large that other health conditions are ignored, missed or not prioritized. For example, a patient may report that they are bleeding but because of their mental illness they may explain it is due to an outside force like aliens. This makes it difficult to separate symptoms and their causes, and Dr. Ayonrinde says that at each stage of the cancer journey, diagnostic overshadowing may further create stigma and labelling which can prevent proper care.
Another problem is one of ethics and obtaining informed consent to carry out procedures. Someone may not have the mental capacity to make an informed decision and decline a pap smear or manual prostate cancer check. This could delay diagnosis with life-threatening results. Dr. Ayonrinde has said that he has seen success when a case worker worked closely with a patient to explain the process, working with the individual and their own concerns and motivations to help them follow through with a long overdue pap test.
“In our research, we have seen that there are things that can be done to respond to the needs of people with SMI. In the true spirit of implementation science, the notion of ‘roll up your sleeves and do something’ has driven this work,” says Dr. Ayonrinde.
Making changes to help save lives
Some of the accommodations are simple. One considers appointment times. Allowing for more time and booking appointments later in the week ensures a patient has the support of a caregiver or mental health worker in the days prior to the appointment—support that may not be available on a weekend before a Monday booking. Another consideration is around language choice, avoiding words that can cause undue alarm or misunderstanding (e.g., suspicious shadow or invasive lesion). Dr. Ayonrinde also says that ensuring patients have the supports needed to follow through with treatments is also key.
As the research continues, Dr. Ayonrinde is making key connections with the local oncologist community to bring awareness and find ways to make cancer care more equitable. He has made headway by making sure people with severe mental illness are designated an equity-deserving population within oncology. “When I met with Scott Berry (Oncology Department Head and Medical Director, Cancer Centre of Southeastern Ontario) he understood this problem straight away as he has seen it in his work. We are hoping to identify oncologists who may be a ‘go to person’ for specific cancers to work with SMI patients,” he adds. He is also working to do more to promote healthy behaviours among every one of his patients including a FIT test awareness campaign during colorectal cancer awareness month in March.
Dr. Ayonrinde admits that cancer care for everyone has been more challenging over the past few years given the impact of the COVID-19 pandemic on the overall healthcare system. Despite that, he says that no one deserves to be left behind. “By virtue of their (mental) illness, these individuals live a life of stigma, marginalization and experience inequity in healthcare that many members of the general population would take for granted,” he says. “When there’s inequity, we owe it to each of these people to help eliminate the barriers, otherwise we are unconsciously choosing who we let die.”
Bell Let’s Talk Day, dedicated to moving mental health forward in Canada, is January 25.
World Cancer Day is February 4 and aims to raise awareness of how we can all close the cancer care gap and play a role in creating a cancer-free world.