Nearly two decades ago, Coluzzi and colleagues published their survey results of supportive services offered at National Cancer Institute-designated cancer centers.1 At that time, 68 percent of responding institutions offered counseling interventions, and 90 percent sponsored support groups and had spiritual care departments.
In 2009, the American Psychosocial Society carried out a similar survey with the intent to establish baseline data upon which progress could be measured in reference to meeting the strategic standards for psychosocial care of cancer survivors outlined in the IOM report.2
While only 146 institutions (comprehensive cancer centers, community cancer programs, and advocacy organizations) responded to the survey, the results confirm that a significant investment of personnel and financial resources is still required to address the psychosocial consequences of cancer nationally.3
Consider some of the following key findings:
- Only half of the organizations that offer clinical cancer care conduct routine psychosocial screening for new patients.
- Patient education specialists were more available at community sites than at comprehensive centers.
- Nearly 19 percent of the nationally designated cancer centers and 40 percent of community based cancer programs employed fewer than three psychosocial professionals.
- One third of comprehensive cancer centers and community-based cancer programs depend upon philanthropic funds to provide psychosocial care.
- Approximately a third of organizations surveyed offered culturally tailored support groups; half of the comprehensive centers and nearly 64 percent of community cancer programs reported minimal adaptation of patient education materials to culturally and linguistically diverse patient groups.
- Social workers were identified as the most frequent providers of psychosocial care that addressed a wide array of services such as counseling, community outreach, and employment, vocational, insurance, financial, housing, transportation, and legal assistance.
My immediate reactions to the findings in this publication were threefold:
First was my dismay about the ongoing lack of recognition of cancer being an illness with mind-body corollaries. We as oncology nurses are well aware that the emotional impact of cancer can be as bad as, if not worse than, the cancer itself. The fact that one half of centers still do not recognize the importance of psychosocial screening at the crisis-focused time of a new diagnosis of cancer is appalling.
While the American College of Surgeons 2015 cancer program accreditation criteria will address this deficiency, it still makes me cringe to think that screening will be done because centers will have to do this to obtain accreditation, rather than because they recognize the need to do this for the patients’ good.
My second reaction is similar to the first in that this is another example of our head continuing to be stuck in the sand. This demands recognition of the cultural mosaic of our country and the need to embrace this reality. The adaptation of patient education materials and the provision of support interventions that integrate cultural sensitivity is not a luxury but a mandate we must actualize.
It behooves all of us to look at the cultural mix of our patient populations we serve and take the first step to address diversity through translation of materials and collaborate with resources that can help us provide culturally sensitive support interventions.
Third, I need to speak to the recognition of social workers being the primary providers of oncologic psychosocial support services. While their expertise and broad base of interventions is fully appreciated, I believe that recognition of nurses’ interventions within the psychosocial realm is "missing in action." This is in part our problem, not taking credit for the myriad of psychosocial interventions we make with our patients and families. We see it as part of our job. We don’t document what we do as it relates to decreasing stress and mobilizing effective coping strategies in our patients. Yet we do it all the time.
When we make recommendations to families to help minimize the caregiver burden, we don’t identify this as helpful advice that needs to be written about. Our involvement with support groups is highly tied to the reduction of psychosocial distress. So many times I have witnessed patients and families feeling anxious preoccupation, due to misperception or being given unclear information, which was significantly reduced by nurses’ clarification.
In summary, there remains so much to do within the psychosocial realm of cancer care. By virtue of our position at the bedside, we can help translate and chronicle the chaos we witness into narratives that address the need for supportive resources.
We can learn from the historic AIDS epidemic by encouraging our patients and families to write about the gaps in services they encountered to key decision makers. But we must take action, "baby steps" at first, to individually, collectively, and nationally, make high-quality psychosocial care available to all who encounter the all-encompassing havoc of cancer.
- Coluzzi PH, Grant M, Doroshow JH et.al. (1995). Survey of the provision of supportive care services at National Cancer Institute-designated cancer centers. Journal of Clinical Oncology, 13(3): 756-764.
- Institutes of Medicine & National Research Council (2006). From Cancer Patient to Cancer Survivor: Lost In Transition. The National Academies Press: Washington D.C.
- Deshields T, Zebrack B & Kenniedy V (2013). The state of psychosocial services in cancer care in the United States. Psycho-Oncology,22: 699-703.