How can we achieve equity in palliative and supportive cancer care?
October 15, 2017
Cleo A. Samuel, PhD
Assistant professor of health policy and management
If you’re like most people, when you see the phrase “palliative care,” you think of end-of-life care, perhaps hospice. Palliative care covers so much more. According to the National Cancer Institute, it is “care given to improve the quality of life of patients who have a serious or life-threatening disease, such as cancer.” It is whole-patient care, which moves beyond the primary course of treatment to consider psychological, social and spiritual needs. Examples include pain and symptom management, physical rehabilitation, mental health counseling and pastoral care.
To be more consistent with this holistic approach to cancer care, many in the field now use the phrase palliative and supportive cancer care (PSCC). With this new framing, we hope to introduce PSCC to more patients much earlier in their cancer-care journey, ideally as soon as they receive a diagnosis.
Q: What kinds of inequities currently exist?
A: In my work, I focus primarily on racial/ethnic inequities in palliative and supportive cancer care. Longstanding inequities include greater symptom burden, higher perceived unmet supportive care needs and lower rates of pain management in black cancer patients relative to their white counterparts. An especially important area of difference, one that has multiple contributing factors, has to do with inequities in effective pain management.
First, providers have been found to underestimate the severity of pain among patients of color relative to white patients. Consequently, providers are more likely to undertreat that pain. Second, pharmacies in predominantly black neighborhoods often have insufficient supplies of pain medications, making it difficult for patients of color to get these drugs when they are prescribed.
Another difference in the cancer care offered to white patients and patients of color is that black patients, in particular, are less likely to receive true hospice care at the end of life and are instead more likely to enter the intensive care unit and receive life-extending procedures. By this stage, such measures are unlikely to provide any survival benefit but are very likely to decrease quality of life in the final days.
Q: What does the future of cancer look like in the United States?
A: Cancer care costs are expected to increase by 39 percent between 2010 and 2020; current staff shortages in the cancer care workforce also are expected to grow. Additionally, experts project a 30 percent increase in cancer survivors between 2012 and 2022, as well as a 45 percent increase in cancer incidence between 2010 and 2030.
It’s important to remember that, after cancer treatment, survivors don’t just return to their lives as they were. Many continue to deal with troublesome symptoms and supportive care needs such as pain, arm and leg swelling, loss of memory, fertility issues and financial difficulties. Life after cancer often is a “new normal” that still requires PSCC services.
Q: What do you recommend for achieving equity in palliative and supportive cancer care?
A: Let me mention two things.
We must move quickly to address the systemwide framing of PSCC, which currently is viewed as a referral service rather than an integral part of routine oncology care. For example, tumor board meetings are used widely and accepted in routine oncology care. These meetings bring together oncologists and other specialists to review patient cases and create comprehensive treatment plans.
Currently, palliative and supportive cancer-care specialists (e.g., pain specialists, chaplains and nutritionists) typically aren’t part of these conversations. Integrating PSCC into routine oncology care will go a long way toward improving access to PSCC services, especially for patients of color, who more often report unmet supportive care needs.
We also must do more to fight implicit bias (the attitudes and stereotypes that affect us unconsciously), especially in the context of pain and symptom management, an area in which patient perceptions and provider assessments are subjective and sometimes incompatible. Providers who underestimate the pain experienced by patients of color have an influence on the types of pain management these patients receive. For some, the physical and emotional distress associated with uncontrolled symptoms can lead to early discontinuation of potentially life-saving cancer treatment.
To bring about long-term change, we must address these provider- and system-level drivers of PSCC inequities. Health informatics is one tool we can leverage to make progress on these core problems. In my research, I am exploring the use of electronic patient-reported outcome tools to assess symptoms and supportive care needs in racially diverse cancer patients. By tracking and analyzing these data over time, we can provide race-specific feedback to providers and create transparency and accountability around how we monitor and manage palliative and supportive care needs for all cancer patients.
I am hopeful that this research will help raise red flags about systematic inequities in PSCC. Recognizing that a problem exists, after all, is the first step toward solving it.
Carolina Public Health is a publication of the University of North Carolina at Chapel Hill Gillings School of Global Public Health. To view previous issues, please visit sph.unc.edu/cph.
