At the age of 37 and right on the heels of becoming a parent, Esther Sabet was diagnosed with breast cancer. In the weeks following, she was inundated with appointments and information concerning her chemotherapy and radiation treatment. Despite both understanding and appreciating the importance of all these appointments, her main priority was being able to cope emotionally.
“That minute when she [the surgeon] told me that I had cancer, I asked right away: Can you please recommend someone? I want to talk to someone,” says Sabet. An appointment with a social worker was quickly set up, but the local cancer centre in Barrie, a city north of Toronto, did not have a psychiatrist or psychologist in-house. Seeing a privately funded psychologist would have been very costly for Sabet, and she was told that the wait time for a government-funded therapist would be close to one year.
It was only through personal connections that Sabet was able to see a psychiatrist within a few weeks. But not everyone is able to get this kind of help as quickly. The Auditor General of Ontario’s 2017 Annual Report found major discrepancies in access to many psychosocial services depending on where a patient lives. And yet, these services are of great benefit to patients and their families, both during treatment and long afterwards.
What is psychosocial oncology?
According to Cancer Care Ontario (the primary agency that advises the Ontario government on all aspects of cancer care), psychosocial oncology encompasses eight different disciplines: psychiatry, psychology, social work, spiritual care, occupational therapy, physiotherapy, dietetic care and speech language pathology.
Many cancer patients also benefit from peer-support programs, which provide the opportunity to connect with other patients who have been down the treatment road, offering a peer connection that can help reduce the fear and anxiety of a new diagnosis. Examples of programs in Ontario are the peer-support groups at Wellspring and Wellwood, and online services offered by Ovarian Cancer Canada and the Colorectal Cancer Association of Canada.
Psychosocial oncology has been recognized as a critical component of cancer care, with studies showing that more than 40 percent of cancer patients can develop significant distress related to not having concerns such as mood, body image issues, sexual function, and anticipatory grief managed. This level of distress has been linked with decreased satisfaction in the health care experience, reduction in quality of life and even decreased survival rates. Providing effective psychosocial oncology services to patients has been shown to improve these outcomes in a cost-effective manner.
Cancer Care Ontario recommends that “in all Regional Cancer Programs, psychosocial oncology services are offered and available to patients and families throughout the cancer care continuum.” However, as Esther Sabet’s story suggests, not all patients have equal access to these important services.
What is available in Ontario?
In Ontario, cancer care is delivered through 14 regional cancer centres (corresponding to each of the province’s 14 Local Health Integrated Networks), and CCO has set benchmarks for a number of quality indicators, including expected access rates to particular services. A recent report published by the Cancer Quality Council of Ontario showed that in 2016, 83 percent of cancer patients saw a dietitian (target of 85 percent), 86 percent saw a social worker (target of 85 percent) and 60 percent of head and neck cancer patients saw a speech language pathologist (target of 80 percent) within 14 days of a referral.
However, access to psychiatry and psychology is a different story. The same report showed that there was no access to a psychiatrist specializing in oncology in four of the regional centres, and nine did not provide access to an on-site psychologist, with Toronto (Princess Margaret Hospital and Sunnybrook), Ottawa, Sudbury and Thunder Bay being the exceptions. The report did not list average wait times for these services when they were available on-site, and did not provide any data regarding access to peer support across the province.
This variability in access was further noted in the Auditor General’s report, which recommended that Ontario prioritize both the funding and delivery of psychosocial oncology services to patients. The AG report also noted the absence of wait-time data for the other five psychosocial oncology services as a deficiency in public reporting.
Survivorship is another key component on the cancer care continuum, and refers to the time after a patient completes cancer treatment. Many psychosocial services offered within a regional cancer centre are only available while a patient is receiving therapy. The type of care needed during survivorship may be different, and often relates to anxiety stemming from fear of recurrence.
How is is psychosocial oncology funded?
Cancer Care Ontario recommends that all its regional cancer centres provide access to psychosocial oncology services, but it doesn’t mandate them to do so. Traci Franklin, clinical manager and psychosocial oncology lead at the North East Cancer Centre in Sudbury, thinks there needs to be “protected, carved-out funding” for these services, much like the procedure-based funding approach used for chemotherapy patients, where funds are allocated specifically for chemotherapy depending on the number of patients requiring it.
The Auditor General’s report found that regional cancer centres received $14.4 million for psychosocial services in 2015–2016, but only $10.8 million was spent on them. Lesley Moody, director of patient-centered care at CCO, says her agency currently doesn’t have a direct influence on how many practitioners (social workers, dietitians, etc.) each centre employs. She notes that psychosocial oncology is still a relatively new area of cancer care, making it difficult to fund it in a similar manner as something much more established like chemotherapy.
Moody is, however, hopeful that “as the field evolves and evidence grows, we’ll have the data we need to advocate for the appropriate resources.” Specifically, she hopes that CCO will eventually be able to make capacity planning recommendations for each of its 14 sites.
There are non-profit organizations that offer psychosocial supports and services outside the purview of CCO. Wellspring, for example, provides a broad range of free services that includes classes on stress management and finance planning and sessions on meditation and Reiki. Unlike the services offered at regional cancer centres, which usually require that a patient is actively receiving treatment, programs at Wellspring accommodate patients well into the survivorship stage of their disease. “They get psychosocial oncology as long as they need,” says Holly Bradley, executive director of the Centre of Innovation at Wellspring.
Gilda’s Club provides similar services but with a greater emphasis on programs for children who experience cancer in their families. Dani Taylor, program and child and youth coordinator at Gilda’s Club Greater Toronto, emphasizes that their services are not meant to mimic those offered at a traditional health care setting. “We’re not a replacement for individual care, we’re a supplement to that,” says Taylor.
Both Wellspring and Gilda’s Glub are funded exclusively through donations, and patients do not require a referral to access their services. These organizations also understand how difficult it can be for patients to travel to a session, which is why they offer online services. This is particularly important given that they tend to be based in larger urban centres.
At the moment, Cancer Care Ontario does not include these types of organizations in its definition of psychosocial care. In general, peer-support programs are not currently integrated into the organized cancer system in Ontario, and as a result, these services do not receive any government funding.
How can we improve psychosocial oncology in Ontario?
One idea for improving access is to train nurses to screen for and potentially manage symptoms related to psychosocial oncology. “Not everyone needs highly specialized training, but everyone needs some foundational knowledge,” says Mary Jane Esplen, executive director of the de Souza Institute, a centre that offers continuing education to health care professionals in areas of cancer and palliative care. The institute currently offers a number of basic training courses, including a mandatory course for all nurses who administer chemotherapy within a cancer centre in Ontario. Although there is also a course in psychosocial oncology, it is not currently mandatory.
Esplen notes that many cancer patients in Ontario are still not being screened for psychosocial distress (the Cancer Quality Council of Ontario reports between 40–82 percent of patients were screened in 2016, depending on the cancer centre), and that nurses are in the best position to both screen for and potentially manage symptoms related to psychosocial oncology. She adds that not all patients require a referral for specialized care, and that with additional training, nurses may be able to relieve some of the burden currently placed on other providers.
Sindu Kanjeekal, a hematologist and oncologist practising at Windsor Regional Cancer Centre (which currently does not have a psychiatrist or psychologist on site), agrees that the training offered by de Souza could be beneficial. “If there were RNs within the system that were trained, that would be a good skill to have,” says Kanjeekal. However, even if nurses within her current team were trained, she says, they may not be able to dedicate the time required to provide these services given the demands of their roles. Kanjeekal also values the role that family physicians play in providing psychosocial services to patients, but recognizes that this level of care can be time consuming.
David Kaplan, chief of clinical quality at Health Quality Ontario and a practising family physician, agrees that visits related to psychosocial concerns are often time-consuming, but says family physicians are “uniquely positioned” to provide this kind of care given the relationships they develop with their patients. A recurring problem in his own practice is that he is often not aware when his cancer patients are experiencing emotional distress. “The patient gets sucked into the cancer system,” he says.“I think a lot of family physicians feel that their patient has been ripped out of their circle of care.” While oncologists provide treatment updates to family physicians, psychosocial issues are often left out.
Circling back to the Auditor General’s report, it’s worth reiterating that access is often more difficult for patients who live in remote areas of the province. “This is an issue of equity, and there is quite a bit of disparity,” says Carol Mayer, president of the Canadian Association of Psychosocial Oncology (CAPO). She credits the growing use of telemedicine as an important factor in addressing this ongoing problem, but says more can still be done.
Gary Rodin, head of the Department of Supportive Care at Princess Margaret Cancer Centre, hopes more research will be conducted to help address all the concerns the province is still facing. He also acknowledges that discrepancies in funding provision have not been helpful in this regard. “It’s presently not funded in an adequate way and not funded similarly to other aspects of cancer care,” says Rodin.
Madeline Li, head of psychosocial oncology at Princess Margaret Cancer Centre, is happy with the recent progress that the province has achieved with respect to psychosocial oncology, but notes that the field has actually been around since the late 1970s. “Everyone focuses on biologics, but paying attention to the [other needs of the] patient? It was historically not viewed as important,” says Li. However, with the publication of the Auditor General’s report advocating for more provincial support in psychosocial oncology, Li says, “our time is coming.”
Correction: A previous version of this article indicated that the Cancer Coaching program at the Ottawa Regional Cancer Foundation offers peer-support services. In fact, the program is offered by a multidisciplinary team of health care professionals with backgrounds in oncology ranging from RNs, social workers, RDs, and clinical exercise physiologists. According to the program, “coaches provide problem-solving, decision-making and skills-development support throughout someone’s entire experience with cancer (diagnosis through survivorship).”