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On May 12, C-TAC hosted the 2021 National Policy Forum. The final panel “How Advocacy Can Strengthen the Serious Illness Care Workforce” featured Dr. Manali Patel, a practicing oncologist and assistant professor at Stanford University, along with Sarah Slocum, Deputy Director of the Center for Eldercare Improvement at Altarum.
Often when we consider the serious illness workforce, we think of palliative care physicians and nurses. But for most people with serious illness and their families, the most critical support is provided by the direct care worker. This is the person who comes to the patient’s home and provides intimate, hands-on care. The direct care workforce includes certified nursing assistants, home health aides, personal care aides, community health workers, and other paid caregivers.
As Marian Grant, Senior Regulatory Advisory at C-TAC explains, “Direct care workers are valued by the family, and are often very effective members of the care team because they come from the same community as patients and families.” Dr. Patel agrees, and notes that “Patients often feel more comfortable discussing goals of care and questions about prognosis with a peer than with a physician.”
Ultimately, direct care workers are the linchpin of serious illness care. Without this workforce, the burden falls on families to provide patient care, or means much lower quality of life for patients without family available to help.
Workforce Policy Failures Exacerbated the Pandemic
Direct care workers were the tip of the spear in the COVID-19 pandemic, but were largely overlooked and left unprotected. Policymakers neglected both the personal risk of disease these workers faced and their potential for exposing vulnerable individuals for disease. The most critical policy failures likely exacerbated the pandemic’s toll. Major gaps in the response included:
- Direct care workers were not provided PPE, despite providing in-person, hands-on care to high-risk patients;
- If a direct care worker is sick, they generally do not have paid time off to stay home nor is there readily available backup care to cover their caseload;
- Due to chronically low pay and inadequate hours, many direct care workers work multiple jobs, creating a high risk of spreading COVID between settings.
The Core Problem
The primary barrier to an adequate direct care workforce has been lack of funding. Slocum laments that in our approach to serious illness care, “we have been pennywise but pound foolish.” Underfunding this workforce has resulted in a host of predictable problems:
- Difficulty in recruiting workers.
- A very high level of turnover—by some measures 100% or more annually—that is costly, undermines quality of care, and disrupts caregiving relationships.
- Diversion of patients to high-cost institutional care in hospitals and nursing homes when many could be safely cared for at home with appropriate support.
Despite the benefits of increasing funding, it is challenging to find additional resources in what are often already low-margin businesses. Grant asks, “How do you make it work financially?” The key is to capture the value in avoided hospitalizations and nursing home stays and use that savings to fund the direct care workforce.
A range of policy solutions are available to strengthen the direct care workforce, but many require significant additional funding and are therefore politically challenging.
- Provide adequate funding for holistic care models
Risk-based payment can provide for comprehensive care models and interdisciplinary teams that incorporate direct care workers. Slocum insists that we “need to set up payment systems that not only value this workforce, but also compensate, train, and stabilize the workforce.”
- Improve worker compensation
Direct care workers earn low wages and often lack benefits. Raising the minimum wage or otherwise earmarking funds for these workers would have a major impact.
- Standardize training and certification
Training standards for workers vary widely between states and settings of care. Setting consistent and adequate standards at the federal level would strengthen the workforce.
To learn more about how policymakers and healthcare leaders can support the direct care workforce, listen to the full presentation at the 2021 C-TAC National Policy Forum website. For more information on C-TAC’s policy work on workforce issues, please explore the policy agenda.