The science of caring: a call to action

To be clear, the science of caring is not about greeting a patient and asking them “how are you doing?” This salutation is a social greeting and should not be confused with a critical evaluation of a patient's multifactorial symptoms or a patient's sense of well-being. To evaluate a patient's condition, medicine constantly develops and relies on objective and subjective tools and devices to diagnose and treat a patient's cancer. In oncology settings, whether it is the tumor size or the genetics, or tumor markers, current practice is shifting from strictly observing the size and location of the tumor alone to exploring the biological make-up of the tumor. In planning next steps in treatment, oncologists are moving to arm themselves with new technologies, chemotherapeutic agents with tumor sensitivity, targeted therapies, immunotherapy, and artificial intelligence to gain not only a better understanding of the tumor but also to plan the best treatment to extend life of their patient. Psychosocial oncology, one of the newer clinical care programs in oncology, despite gaining a presence in cancer care, still has a long way to go. Many if not most cancer programs around the world provide limited funding to supportive care services. Despite the prevalence of cancer-related distress, cancer care remains focused on eliminating the cancer itself with limited funding and resources directed to care of the patient and their ongoing struggles related to the fear associated with cancer, cancer recurrence, and palliative care. While the biological aspect of cancer remains an essential component of care, the psychological, social, financial, and spiritual aspects of cancer remain troubling to virtually all patients with cancer. Health care practitioners too often accept these concerns as a normal consequence of being diagnosed, being treated, and living with cancer. Their view is that this situation would naturally create feelings of distress, fear, anxiety, and depression. These psychological manifestations “go with the territory.” This is outdated thinking and those of us working in psychosocial oncology experience frustration when we see the high volume of patients seeking support and we have limited professional resources with which to respond. This continues to be the case despite the research demonstrating that the levels of multifactorial distress range from 30 to 45% of our patients.1 Psychosocial oncology working groups, national societies, the Institute of Medicine,2 IPOS, and multiple international oncology organizations have clearly stated that quality cancer care should include psychosocial oncology integrated into cancer care programs. These bodies have supported the call for psychosocial care as a universal human right and that distress should be measured as the sixth vital sign.3–5 Since being included as an nongovernment organization in official relations with WHO (2014), IPOS has partnered in the development on best practices and training programs, which includes Screening for Distress as the sixth Vital Sign IPOS-ECHO.6 Importantly, as well, the Union for International Cancer Control (UICC) stated in the World Cancer Declaration that effective pain control and distress management services should be universally available.7 Furthermore, the two largest medical oncology societies in the world, the American College of Surgeons Commission on Cancer and the American Society of Clinical Oncology, have introduced in 2014 new standards requiring the identification of people in need of support as an integral step for modern oncology care.8 Research clearly demonstrates that timely attention to biopsychosocial symptoms can lead to fewer emergency department visits and fewer hospitalizations.9 Furthermore, detection of symptoms through routine distress screening (also called patient-reported outcomes) can lead to improved symptom control through more responsive care in real time and early action before complications worsen, all of which can enable improved physical function and mobility, and support patients to feel better, live longer, and require fewer resources.9 Given these benefits, the use of patient-reported outcomes in standard symptom management should be considered a component of high-quality care.10 While many cancer programs struggle to support costly curative or palliative treatments, the very compelling findings about the benefits of timely symptom management and psychosocial oncology should be key to better patient care and even a survival advantage. Despite this robust global recognition of the need for psychosocial cancer care programs and institutions embracing these quality standards, it is important to acknowledge that cancer care is failing to adequately fund psychosocial oncology as one of its core programs. That is our challenge! Call to action What can/should IPOS and its membership do? Perhaps it is time to promote the research findings in a more public and political way, promoting the value to patients, their families, and clinicians of psychosocial oncology as a core program in oncology practice. After all, the IPOS standard of the Screening for Distress has been accepted by WHO and UICC, as well as 75 cancer programs worldwide. Results from studies on the prevalence of distress should be compelling enough to suggest that there should be a significant role for psychosocial in cancer care and oncology settings. Harold Burstein in 2017 at ASCO stated very clearly, “Patient focused team can reduce ER visits, improve Quality of Life and improve overall survival.”11 Why has not IPOS taken up or amplified Burstein's opinion? Burstein even stated:“If this were a drug that had a survival advantage of this magnitude, it would be priced at $100,000, and we would ask how we would get this into our practice……”11 The challenges remain. How can psychosocial oncology better find its place in oncology centers and programs when funding is limited? Accreditation bodies can influence changes in organizational structures. Partnerships with insurance companies and pharma can be seen as an opportunity. Philanthropy will help but never enough and certainly not for most settings globally. In the absence of a formal strategy, and with international leadership, I am proposing that it is time for IPOS to give strong voice to these arguments and form a task force to take the leadership and create an action plan. The committee should be international with global leaders with the sole focus of building our position and advocating for the inclusion of psychosocial oncology as a standard of care for oncology programs. We cannot wait to be included; we need an inclusive science of caring action plan to be embraced more widely, not only in developed countries but in all countries.

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