Respect for Direct Care Workers in Hospice Care

It is difficult these days to find a major healthcare organization or association that has not pledged to address historical racial disparities and health inequities in a time of renewed national attention to the widespread effects of systemic racism in America.

For hospices and home care providers, an obvious opportunity for tackling disparities can often be found on their own payrolls. Direct care workers, also called home health aides, nurse aides, personal care assistants, or supportive care workers, are disproportionately women and people of color.

Typically, they are among the lowest paid members of the care team. A quick scan of current Indeed job postings suggest salaries for CNAs tend to be in the $16 to $20/hour range, as low as $11 in Georgia and as high as “from $25” in New York; personal care aides make slightly less: $11 to $16/hour. However, seriously ill patients may view aides as the most essential service that makes it possible to live safely in their own homes. Bathing, dressing, and feeding a seriously ill patient can also create a profound intimacy with their care worker.

For hospices and home health agencies, home health aides are defined and vital members of the care team. Their roles may be less clear or more optional in newer models of home and community-based palliative care—although a look at the eight domains of palliative care defined by the National Consensus Project for Quality Palliative Care might suggest that not including direct care services could result in unmet needs in some of those domains.

Paying a living wage, offering meaningful career advancement opportunities, providing training, allowing paid time off, treating staff with more respect, integrating them into the functioning of the team, and even inviting them to attend the interdisciplinary team meeting are all opportunities for the team to start honoring the contributions of these essential workers.

Margherita Labson, BSN, MSHSA, former executive director of the Joint Commission’s Home Care Accreditation Program and current member of the CSU Shiley Institute’s National Advisory Board, has a particular interest in these issues. “I began as an aide,” she explained. Labson is now doing independent post-graduate self-study on what’s going on in the home care space.

Healthcare is a field that places great emphasis on recognized professional credentials. Some of the people who work as aides were registered nurses in their country of origin, Labson noted. “Still others have a deep and abiding love and understanding for how to deliver patient care in the home.” Their encounters with patients can be profound social interactions, especially if aide and patient share a cultural heritage.

“It’s not just giving a bath. These aides have significant direct impact on the social determinants of their clients/patients’ health that will determine if a consumer can remain safely at home. Their input is vital to the delivery of integrated care,” she said.

“There is a sense of real professional satisfaction that comes from helping another individual feel clean right down to their teeth,” she said. Even though aides are often not licensed or similarly credentialed, aides are powerful contributors to the work of the hospice or home care team. “They can sometimes tell you more about the patient’s needs and wishes than even family members,” she said.

“But we don’t value that kind of work enough. Even the term ‘aide’ is not indicative of what they are doing—their professional role in personal care and activities of daily living,” Labson said, although she has not yet identified what might be a better term.

Ladders of Advancement

Altonia Garrett, MBA, MHA, RN, executive director of the Center for Equity, Inclusion, and Diversity at Capital Caring Health, a hospice and palliative care agency in the Washington, DC, metro area, said she learned as a nurse to value what CNAs bring to the team. “We know we have a diverse workforce of direct care workers in this country, but there’s definitely a lot of work to be done to make it more equitable.”

A lot of programs say their principles are to care for everyone, but are they doing enough to care for their own staff? In addition to paying something closer to a living wage, hospice and home care providers could implement a CNA clinical ladder designed to encourage and concretely reward career advancement.

Capital Caring has such a ladder with three levels for CNAs, starting with entry-level positions for those who have a certificate of completion from an approved nurse aide training program. Those who accrue 500 hours or more of service or who pass the Certified Hospice and Palliative Nursing Assistant exam offered by the Hospice and Palliative Credentialing Center (CHPNA); move up the ladder to higher pay. Capital Caring offers financial support for healthcare-related tuition and to defray the cost of the CHPNA exam.

Garrett encourages hospice agencies to ask their direct care workers what’s important to them and to explore their long-term career goals. “Some say they’d like to become a nurse, and the organization can support that goal with tuition reimbursement and other tangible supports.” Others would prefer to remain CNAs because of the meaning they find in that work.

“An increase in salary for direct care workers will more than pay its way in staff retention,” she added. But if an aide becomes an LVN, will there be a position for them in the company? “We cry a lot about workforce issues in this field. But we must be more creative and intentional in our response,” Garrett added.

Such approaches could include a role in teaching their skills to other aides, training them to serve as preceptors, specializing in certain types of care delivery, for example, wound care, or participating in presentations to the community—again reflected in the pay scale.

“But it isn’t just about money,” Labson said. The issues also include policy and the need to get behind proposals to standardize training and credentialing requirements, for the protection of consumers. But mostly it’s about a mindset that acknowledges the role—and professionalism—of this workforce. “The way forward is to promote and recognize the value of their contribution, and to talk it up as a field.”