Healthcare teams comprise a multitude of healthcare professionals. But the unsung heroes on the team are caregivers, the family and friends who assist in carrying out the treatment plan at home.
As an oncology nurse navigator, I worked with patients whose families provided diverse levels of care and support in the home. The “family” may be spouses, parents, siblings, adult and minor children, grandparents, and other relatives, as well as committed neighbors or friends. Caregivers are volunteer workers who help with tasks like grocery shopping, bathing, dressing, feeding, and administering medications. In some cases, they oversee more complex care such as ventilators, wounds, and catheter maintenance. Often, providing care is not a choice but rather an expectation—and for many, that is a welcomed expectation. Many caregivers see their role as a way of giving back to someone who has loved or cared for them.
According to a recent Executive Order from the White House (Executive Order 14095, titled Increasing Access to High-Quality Care and Supporting Caregivers) there are 53 million people titled as family caregivers in the United States from every community, and many face challenges due to lack of personal support, timely training, and respite breaks. Many do not have the financial means to hire additional help and are unaware of how to access and utilize community resources. Proposed rules released on July 13, 2023, by the Centers for Medicare & Medicaid Services call for changes to Medicare payments under the Physician Fee Schedule and other Medicare Part B issues to create a system that results in better access to care, quality, affordability, and innovation.
One of the proposed rules, titled Caregiver Training Services, would reimburse healthcare providers to train and involve caregivers in carrying out a patient’s treatment plan.
The Biden-Harris Cancer Moonshot Program aims to provide every American with cancer access to patient navigation services. There are many proposals on the table, such as the Community Health Integration Services proposal, the Principal Illness Navigation Services proposal, and a telehealth services proposal. These are the first of their kind administrative actions to pursue additional support for caregivers. Hopefully, after the public comment period that ends on September 21, 2023, multitudes of advocates will have spoken up in full support of advancing these initiatives to go in effect on or after January 1, 2024.
I will keep you apprised of these initiatives that will help support our nation’s caregivers.
Sharon S. Gentry, MSN, RN, HON-ONN-CG, AOCN, CBCN, is an oncology healthcare provider with over 40 years of oncology care experience, the Program Director of the Academy of Oncology Nurse & Patient Navigators (AONN+), and a champion of people living with cancer.