More than 75 international cancer organizations have recognized distress as the Sixth Vital Sign in cancer care, after temperature, blood pressure, pulse, respiratory rate and pain. In Alberta, incorporating mental wellness into cancer care has helped patients cope more effectively with their diagnosis, and has empowered survivors to become partners in their own healing.
Some of the fundamental challenges a cancer patient faces may not be directly visible — anxiety, pain and grief don’t appear on an x-ray. The Putting Patients First (PPF) symptom reporting form is a screening tool used at all cancer care delivery sites under CancerControl Alberta to help patients and their health care teams identify and measure all of their symptom burdens, visible or not.
Dr. Linda Watson is an oncology nurse with a PhD in nursing science, and the lead of Person Centred Care Integration with CancerControl Alberta. She believes the PPF symptom reporting tool is more than just a form. It’s about empowering patients in a medically driven system.
“We have to recognize that we are the experts in cancer treatment, but the patient is the expert in their life,” says Watson. “If we don’t pay attention to the patient’s life, their ability to participate in treatment is compromised.”
At each clinical visit, patients complete the PPF form and rank symptoms like pain, nausea, numbness and tingling, as well as fears, worries and concerns. For the tool to be most effective, the clinical team and the patient must then break down those areas of distress and identify the underlying causes. Are there issues with finances, for instance, or with sexuality, identity or relationships?
“Patients may indicate that they are struggling with something that their nurse or doctor can’t necessarily fix, which is daunting for a health care professional,” says Watson. “But, by talking to the patient about their concerns, the health care team can better understand how to support the patient, even if they can’t fix their problem.”
The next phase of this process is developing a Patient Reported Outcome (PRO) Dashboard, a data program that will offer a quick and convenient overview of a patient’s reported symptoms. PPF forms will be entered into Alberta Health Services’ existing Electronic Medical Record (EMR) and analytic software, creating a “dashboard” that displays symptom burden trends for each individual patient. Clinicians will then be able to log into this software to access the information. The project will give clinicians and patients a tangible, colour-coded graph of self-reported symptoms across their treatment timeline. Watson says the program is currently being tested at the Central Alberta Cancer Centre in Red Deer and has already helped clinicians and patients identify and address trends in pain, anxiety and other burdens.
“Fundamentally, this is about how we as a care team ensure that the patient gets the support and symptom management they need in order to be as well as possible,” she says.
A Patient’s Perspective on Screening for Distress
At age 32, Charlotte Kessler underwent an awake craniotomy to remove a mass embedded along the motor sensory strip in her right frontal lobe. Pathology reports revealed anaplastic astrocytoma, a rare malignant brain tumour. Kessler’s treatment started quickly thanks to being part of a clinical trial. Treatment consisted of 33 rounds of radiation followed by 24 rounds of chemotherapy. She finished active treatment in November 2015 and remains stable. Today, Kessler serves as co-chair of the Patient & Family Advisory Council (PFAC) with the Calgary Cancer Centre Project, using her voice and experience to improve cancer care.
What impact does a cancer diagnosis have on someone’s mental health?
It’s life-changing. [My husband and I] had those initial moments of, “Why me?” And then we realized, is that what we want for whatever time we have left? We chose to face it as a challenge and stay positive.
How did you take an active role in managing your mental health?
We integrated ourselves into the care team as an equally vital member of the decision-making process.
How does the Putting Patients First (PPF) screening tool address mental health challenges?
If used effectively, it can be instrumental in helping the patient feel like part of the team, part of the journey, listened to, and helped — looking beyond just pain and nausea and the physical symptoms, and paying attention to fears and worries and concerns.
How important is it for a patient’s mental health to have that empowerment?
For me, it was critical. I was fortunate that I had a care team [during my neurological trial] that encouraged me and got to know me and started treating me, the person, instead of me, the disease.