WHOLE HEALTH: Patti Morris, executive director of Wellspring Calgary, says the facility that offers more than 20,000 hours of programming a year is designed to speak to mind, body and spirit of cancer patients and their families.
Photo by Joey Podlubny
When Calgarian Linda Hack was a public health nurse 30 years ago, she was skilled at finding resources to help her patients. In 2010, Hack, then 54, would find that skill an invaluable tool in her own life after being diagnosed with and treated for invasive cervical cancer. “When you are diagnosed with cancer, you become part of the medical system, and you are not in control of many things that happen,” she says. “What I set out to do was self-manage my recovery and take back some of that control.”
Hack knew that if she could become stronger – both mentally and physically – she could deal with the diagnosis and better adjust to her new reality. She drank lots of water, ate regularly and took walks during treatment. She sought out specialized physiotherapists to help her with pelvic floor exercises and to manage lymphedema. She consulted the University of Calgary’s Thrive Program for a specialized fitness assessment. She practised yoga, spent time with her loving family and friends and adopted a “one day at a time” attitude. Little things, like a trip to Tim Hortons for a coffee or Friday lunch with her daughter, became extra celebratory. “You have no control over the cancer itself,” says Hack. “But you do have control over how you respond to it.”
In addition, on the advice of a nurse from Calgary’s Tom Baker Cancer Centre, she did something that changed her life. She visited a place called Wellspring Calgary, and found a community of hope for cancer patients and their families. At Wellspring, she became a peer support volunteer and started a support group for women with cervical cancer. Today, she and her husband attend a program called A Gathering Time for Mortals, which is targeted to people experiencing advanced-stage cancer. “I was feeling overwhelmed,” says Hack. “But once I found Wellspring, I never looked back.”
Photo by Julia Hack
Wellspring, which gets some of its funding from the Alberta Cancer Foundation, is a cancer support centre that offers a speakers’ series, resources and evidence-informed programs to help people at any point in their cancer journey (Wellspring does not offer clinical or research services, but works very closely with colleagues in the community who do.) “Our diverse group of offerings speak to body, mind and spirit,” says Patti Morris, who has served as executive director of Wellspring since its inception in 2006. “Wellspring is also a community, a welcoming space, where people living with cancer can be with others who ‘get it.’” Programs dubbed Brain Fog, Exercise and Educate, and Creative Journaling empower and build confidence so people diagnosed with cancer as well as their families can make a positive difference in their lives.
It also offers a library, child-minding service, the previously mentioned peer support program and a stream of services specific to young adults who are living with cancer. Services are free and do not require a referral. There are more than 2,700 members at Wellspring, which offers over 20,000 hours of programming every year.
Treating the whole person is “vitally important” for enhanced quality of life, Morris says, adding that the need for this kind of approach is growing, as more people are diagnosed with cancer and live longer with the disease. Not attending to symptoms of distress can not only make a complicated cancer journey that much more difficult for people, but can overtax an already-strained medical system if patients seek out support in a reactive way.
No one knows this better than Dr. Barry Bultz, director of the Department of Psychosocial Resources at the Tom Baker Cancer Centre. He is a leader in psychosocial oncology and is passionate about the importance of tackling what is now referred to as the sixth vital sign (behind blood pressure, temperature, heart rate, pulse and pain) – distress.
“Cancer is a challenging disease,” he says, involving complexities of diagnosis, treatment, recurrence of disease, survivorship and palliative care. The primary goal of cancer treatment is remission or, ideally, a cure, but if that’s not to be, the goal becomes helping the patient adjust to living with a life-threatening disease. How can they be comfortable, cope with the stress associated with physical, psychosocial and practical manifestations of the disease, decrease burden and suffering, resume a healthy quality of life and facilitate a good death through resolution of existential issues? In other words, it is about reducing distress surrounding the overall cancer experience.
The Screening for Distress (SFD) tool, used in Alberta and eight other provinces, tracks and treats distress associated with the cancer experience. Developed at the Tom Baker Cancer Centre with funds from the Alberta Cancer Foundation, SFD is a one-page questionnaire listing 10 questions and a well-being checklist, designed to track a patient’s distress levels in a variety of areas repeatedly over the cancer journey. It is used by the health-care team to identify and gauge what is bothering a patient, so that clinical responses can be timely and tailored. “If we don’t measure these things, we can’t treat them,” he says.
Here is a case example of SFD in action: A patient with advanced-stage melanoma was referred to Psychosocial Resources with high-level anxiety. Using the SFD tool, it was found that he had significant levels of untreated pain (he hadn’t mentioned that at the clinic as he was a “tough old Albertan” and didn’t want to rely on drugs). He was then referred to the pain clinic where his pain was managed. As a result, his anxiety was reduced.
Because SFD is used routinely with all cancer patients, and touches not only on issues like depression and anxiety but on more “physical” areas like fatigue and pain, it tends to destigmatize the discussion of the distress experience, which is estimated to impact up to 45 per cent of patients. This is important because it’s common for patients to under-report symptoms (pain, fatigue, weight loss, lack of appetite, anxiety and depression) unless asked directly by the health-care team. As well, health-care personnel have not always asked the right questions. “SFD takes the guesswork out of what is going on and what we should do to help reduce the burden of cancer,” says Bultz. “It creates efficiencies in patient care.”
A patient reporting difficulty eating on the SFD document, for example, might be referred to a dietitian. Another who is feeling depressed due to being unable to work might be sent to a financial resource counsellor. Patients are also supported at Psychosocial Resources through group work or one-on-one therapy with psychologists, psychiatrists or social workers.
Large-scale studies are using data from the SFD tool to inform practice. For example, when fatigue was discovered to be a critical problem for cancer patients, a Calgary doctoral student developed a program called I CAN Sleep, to help patients sleep better using cognitive behavioural techniques like not using caffeine past a certain point in the day, avoiding daytime naps and setting a consistent time for sleep at night.
BIG PICTURE: Funded by the Alberta Cancer Foundation, both the Screening for Distress program and Wellspring Calgary recognize the importance of addressing the patient as a whole.
Bultz is not alone in calling for routine distress monitoring and management as part of standard cancer care. More than 75 international organizations, societies and accreditation bodies, including the Union for International Cancer Control (UICC), are on board. “The emphasis is on treating the whole person,” he says. “We need to take a multi-dimensional approach to dealing with our patients.”
That’s how Hack continues to live her life – fully and in an engaged way, until the day she cannot. It’s not always easy – she has bad moments, and it has taken time to accept her new reality. “You are on a new road,” she says. “There is no way you can get back to exactly where you were.”
But she’s travelling that road with grace. She continues to use the tools she has sought out to keep her moving in the right direction, and is seeking out new ways to live as vibrantly and functionally as possible. And she has advice for others: “Life throws random curveballs. You really don’t know what is around the corner,” she says. “Don’t take the present for granted. Try to be fully present and in the moment.”
Screening for Distress
- SFD is a one-page survey that assesses the distress level of cancer patients and helps identify areas where further assessment and interventions may be required.
- The SFD intervention involves the routine use of the survey, a clinical conversation to identify patients’ priority areas of concern and appropriate clinical responses to those concerns.
- The SFD tool is composed of two sections: the Edmonton Symptom Assessment Scale (ESAS-r) and the Canadian Problem checklist.
- Since the SFD intervention was implemented, patients have reported “significantly less symptom burden and fewer common problems,” says Dr. Linda Watson, lead for Person-Centred Care Integration.
- Having patients fill out the tool is only a first step. “If we don’t review and respond to the issues identified on the tool, we can do damage to the trust between us and the patient,” she says.
- Next up is the development of an electronic system to access and evaluate individual reporting, and help track response trends and inform practice. Also, there will be ongoing support to ensure all centres integrate the SFD intervention into their approach to care as effectively as possible.