If we are going to serve patients well, we need to build relationships with them. The current model of healthcare, with brief interactions, is not built to nurture these relationships. We do some things well, but make assumptions about the needs of cancer survivors in survivorship care plans, as a result of the limitations of the traditional healthcare system.
These days, many nurses and physicians report they are burned out to some degree, and this means the have less energy to truly be engaged in patient care. Independent providers are becoming scarce, but there are people who are not in the thick of the mainstream healthcare industry, who trying to find work-arounds to deliver better care for cancer survivors.
There are innovative approaches to survivorship care coming from complementary providers within the healthcare, charitable, and nonprofit sectors. I will mention three of these that I think are particularly forward-thinking and dedicated. Check these websites to see what can be done with a passion and commitment to improving how we serve cancer survivors.
Denise Stewart in Brisbane, Australia
is an occupational therapist who started the Online International Breast Cancer Rehabilitation Summit
, bringing together practitioners from all over the world who are dedicated to new approaches to help breast cancer patients.
Kristin Carroll and Jillian Schmitt are physical therapists who started Survivorship Solutions
, headquartered in Chicago, to address the gaps in collaboration among healthcare providers and access to services for cancer survivors, as part of their mission to change the culture for a coordinated cancer road map for all healthcare organizations.
Karen Anderson started Foundation 96
, with a mission of connecting the cancer community. They believe cancer care should not stop at the end of treatment, and their goal is to help cancer survivors reduce side effects from treatment.
I have a story from recent personal experience, and it’s not about oncology, but it’s important from the standpoint of illustrating what we should be doing for our cancer patients.
I have had both a friend and a family member enter the healthcare system for major surgery. One was a hip replacement surgery- the second of two hip replacements. The other was a heart valve replacement with additional repair of residual septal defects from birth.
I was appalled to find out that neither of them had been referred to physical therapy or cardiac rehab. They each had to make their own efforts to obtain a referral. Each of them are well-versed in the healthcare system and good at advocating for themselves. This sets them apart from many patients.
These two patients were healthy, active people up to the point where their health limitations stopped them. Each deteriorated in their quality of life and ability to be active, and experienced deconditioning as a result. They both enjoyed hiking and the outdoors, and they had gotten to a point where they were unable to participate, triggering depression and difficulty in everyday functioning.
Between the physical trauma of surgery, the need for recovery and guidance in returning to full function, the deconditioning, and the depression around their decreased quality of life, they will need professional guidance to restore their previous level of function.
What does this mean for oncology nurses and cancer patients? Simply, we need to establish relationships with our patients, attempt to get to know them and their values, so that we can help them restore their quality of life afterward. Patients might not have the healthcare background or self-advocacy skills to know what to ask for, such as rehab or therapies.
So often we think of cancer treatment as limited to medical interventions to put the cancer in remission. That shouldn’t be the end of it. Surgeries, chemotherapy, radiation, and other treatments might leave our patients with no evidence of disease, but we must remember that we’ve created trauma to their cells, organs, psyches, and lifestyles!
We need to clean up the mess we made. It might not be within our skill set and expertise to restore them, but we certainly can use the resources in our communities to refer them to appropriate services!
We need to be aware of our own shortcomings as providers so that we are doing everything possible to refer our patients to services that will restore the quality of life they value. All healthcare providers should examine their own values first, as well as their personal beliefs, attitudes, and behaviors.
When we renew our self-awareness, we can be more empathetic and authentic for our patients. If we become aware of burnout or the factors in our environments that are sapping our energy and creativity, taking us away from the things we love, and impacting our ability to care, it is our duty, both to ourselves and our patients, to take action to restore what is misssing.