Living with cancer, and left on their own

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By Esther Green

Living with cancer is about dealing with the unknown. It‘s about trying to grasp the news of a diagnosis and starting to understand its life-changing effect. It’s about wondering if the treatment is working and whether the side effects will go away soon. It’s about questioning whether anything else can be done to overcome this illness. And it’s about figuring out what life will be like when treatment is over.

The Canadian Partnership Against Cancer recently released Living with Cancer: A Report on the Patient Experience, a unique report that looks at the disease exclusively from the perspective of the patient. The findings reflect the voices of over 30,000 Canadians and it is the country’s largest accumulation of data on the experiences of people living with, and beyond, a cancer diagnosis.

The report shows that most Canadians with cancer believe our health system does a good job of treating the disease, however many report experiencing significant, and often debilitating, physical and emotional side effects, as well as practical concerns, during diagnosis, treatment and survivorship.

This may be expected, but what’s troubling is that patients are reporting that these concerns are often not being adequately addressed by their health-care providers during the different stages of the disease. The survey data show that patients’ care providers didn’t always connect them with the services they needed, even when they had already made their concerns known.

Over 50 per cent of patients, who reported having anxieties and fears following their diagnosis, were not referred to any support services for these concerns, and one in four patients indicate that they were not satisfied with the emotional support they received during outpatient care. Furthermore, over 50 per cent reported being told by their care provider that their physical challenges, were “normal” following treatment and that nothing could be done about them, and over 30 per cent indicated a similar response regarding their emotional concerns post-treatment.

One of the patients who was interviewed for, and featured in, the report said, “Following my cancer treatment, I felt like I was left floating in the breeze in a scary world of uncertainty. I was no longer actively fighting against my tumour but I had this underlying fear that it might recur at some point. My doctors never told me I was in the transition phase of my cancer experience, they did not discuss next steps and things I could expect, and they did not direct me to any resources. I felt like I was on my own.”

As the report highlights, care providers need the time and support to be able to prompt meaningful discussions with their patients assessing their physical, emotional and practical concerns before, during and following treatment. They need access to resources to help them provide referrals and direct patients to available services to support their needs.

There are gaps in the health system in the way cancer patient symptoms are monitored and addressed. At cancer centres, hospitals and community care facilities in the 10 provinces, there is no systemic integration of monitoring of patient symptoms starting at diagnosis and continuing right through to survivorship. Care providers are not being provided with tools and/or other methods (i.e., patient navigators) to make this a routine and seamless practice for all patients.

Efforts are already being made to address this problem. Over the past two years, the Partnership has been working with provincial cancer agencies and health organizations across Canada on a Patient Reported Outcomes (PRO) Initiative for those with cancer. This initiative involves having a standardized core set of patient-reported outcome measures and patient-reported experience measures in hospitals and cancer centres.

The program is working to integrate these measures in a meaningful way into clinical practice so that patients experiencing symptoms can have them recognized and addressed, leading to a better overall cancer care experience. These practices have been adopted in several provinces including the Prairie Provinces, Ontario, Nova Scotia, Prince Edward Island, Newfoundland and Labrador, and three sites in Quebec. The Partnership will be moving to continue to scale up use of patient reported outcomes at cancer centres and hospitals in these jurisdictions and spread to other provinces and territories in the coming years.

The PRO Initiative hopes to lead the shift in the delivery of cancer care in Canada from disease-centred to person-centred, with the needs of patients addressed during all stages of the disease. Providing person-centred care will ensure that those with cancer and their families are seen as unique individuals and receive coordinated support that is considerate of their time and preferences. It will also help in improving accessing to useful information that promotes self-care.

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Such initiatives are a start, but more needs to be done. To best support people with cancer and their families—from the moment they start wondering if they have cancer to post-treatment care—it is essential to treat them as individuals with a reality that extends beyond being a cancer patient. A health care system guided by a person-centred approach recognizes this and won’t leave patients to feel like they’re on their own.

For people with cancer seeking support, you can connect with other patients and health-care providers at www.cancerchat.ca. For support in your community, visit the Canadian Cancer Society’s Community Services Locator.

Esther Green is the Director, Person-Centred Perspective at the Canadian Partnership Against Cancer.