Ethical Problems with Rural Cancer Patients’ Access to Care
March 1, 2023
Patients with cancer who live in rural areas of the United States face substantial — and disproportionate — hurdles to quality care. “Patients often have worsened clinical outcomes attributable to their place of residence,” notes David Shalowitz, MD, a Winston-Salem, NC-based gynecologic oncologist and health equity researcher.
Many health systems have shrunk the availability of some cancer treatments outside large referral centers because there is strong evidence suggesting patients fare better when complex care is delivered at high-volume centers. “Unfortunately, centralization of care makes rural patients’ geographic barriers to care worse. It could exacerbate health outcomes disparities for this underserved population,” Shalowitz cautions.
Shalowitz and colleagues argued rural populations should be included in efforts to improve cancer care health equity.1 “At the moment, complex cancer care delivered in lower-volume settings, such as those in rural communities, is associated with worsened survival,” Shalowitz explains.
Rural patients with cancer are at risk for disproportionately poor clinical outcomes because they live far away from cancer care resources. “However, community access points do reduce geographic barriers to care,” Shalowitz notes.
Shalowitz and colleagues posed these ethical questions: Is it acceptable for health systems to knowingly implement care in rural settings with less-than-best outcomes in the pursuit of better access to care? What safeguards must be in place to ensure that implementation of such care does not exacerbate disparities rural populations already experience? What informed consent is needed to explain the pros and cons of traveling to a center that is far geographically, but offers better outcomes?
As with any shared clinical decision-making process, clinicians must discuss with patients their diagnosis, its implications, and a recommended treatment plan. “Although site of care is not traditionally considered part of treatment decision-making, we argue for its inclusion in the process,” Shalowitz says.
Shalowitz and colleagues offered other recommendations. Patients and clinicians should explicitly discuss any available data regarding differences in the care delivered at potential treatment sites, potential accompanying outcomes differences, and the costs and benefits of pursuing treatment at each site. Rural patient navigators should be involved in this discussion, considering the complexity of care coordination for patients with cancer.
Ultimately, final decisions regarding site of treatment should be made by informed patients, rather than their physicians. “Patient education is an ongoing process, rather than a single interaction,” Shalowitz says.
It is perfectly reasonable for an ongoing care plan to be adjusted when desired and medically feasible. It is necessary for patients to be as informed as possible regarding the implications of site of care. Even so, Shalowitz and colleagues argued that no matter how well-informed the patient, it is not a sufficient safeguard for patients opting for treatment in lower-volume settings.
“We, therefore, also recommend that any adjustments to local cancer care be considered reasonably within the standard of care by disease experts, and are also part of a sustainable effort to elevate outcomes associated with local care to those associated with higher-volume referral centers,” Shalowitz says.
REFERENCE
1. Shalowitz DI, Magalhaes M, Miller FG. Ethical outreach for rural cancer care in the United States: Balancing access with optimal clinical outcomes. JCO Oncol Pract 2023; Jan 23: OP2200629. doi: 10.1200/OP.22.00629. [Online ahead of print].
Patients and clinicians should discuss any available data regarding differences in care delivered at potential treatment sites, potential accompanying outcomes differences, and the costs and benefits of pursuing treatment at each site. Rural patient navigators should be involved in this discussion, considering the complexity of care coordination for patients with cancer.
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