After Bridget Siljander graduated from high school and began her nursing career, she signed on to care for Jeff, a man with quadriparesis resulting from multiple sclerosis. She has earned a livable wage for eight years by providing round-the-clock care-ensuring nutrition and hydration, skin integrity, respiratory function, range of motion, and urinary and bowel patterns, as well as giving the emotional support that has helped to ward off Jeff's depression-while also caring for a daughter with cerebral palsy.
Siljander is not a nurse; she's a "direct care worker" (DCW), the most recent name for the more than 2.3 million health care workers we also refer to as certified nursing assistants (CNAs), home health care aides, personal attendants, and unlicensed assistive personnel (UAPs) who provide care to people in their own homes or in skilled-nursing or assisted-living facilities.
I heard Siljander speak at a reception for the Direct Care Alliance in New York City last September. The alliance is a coalition focusing on achieving "broad-based reforms" in policy and practice. Leonila Vega, its executive director, told those present that DCWs often earn less than dog groomers and manicurists, from about $7,000 to $14,500 a year. "They're the backbone of our long-term care system. They are overburdened, underpaid, overworked," Vega said. According to the alliance's Web site, http://www.directcarealliance.org, 70% of home health care aides are hourly workers who go unpaid between assignments, and 30% of CNAs in nursing homes work part time. CNAs receive between 70 and 100 hours of training, but other DCWs get far less. Many DCWs have inadequate benefits, so they must work when ill. And according to the Institute of Medicine, these workers are disproportionately single mothers of color who live on the edge of poverty, even while working.
At the reception, I asked Vega whether the alliance had gotten support from national nursing associations for its efforts on behalf of DCWs. No, she said.
How embarrassing. Certainly, nurses such as Charlene Harrington and Jeanie S. Kayser-Jones, both from the University of California, San Francisco, have dedicated their careers to improving long-term care. But where is nursing's leadership? The Web site of the American Nurses Association has a position statement from 1995 addressing the importance of nurses focusing on improving long-term care, and statements from 1992 and 2007 acknowledging the importance of UAPs in long-term care. But I've found no evidence that any national nursing organization is advocating on behalf of DCWs. Some nurses may think that it's challenging enough for RNs to be their own advocates. But nursing is a profession based in science and knowledge. Are we not responsible for all nursing care, regardless of who provides it?
Kayser-Jones's article describing the case of a nursing home resident who died malnourished and in pain with a stage IV pressure ulcer (page 40) exemplifies the worst that can happen when RNs-those in the facility and those in other positions-turn a blind eye to the daily care rendered in a nursing home. It may be easy to blame the so-called paraprofessionals who cared for this man, but I hold all nurses-and society-accountable for the continuation of such horrors.
On page 50 you can read a report of my interview with Gail Kass, president and chief executive officer of NewCourtland Elder Services, a highly acclaimed long-term care system serving Philadelphia's poor older adults. She told me that the key to success was focusing on the working conditions, training, and development of DCWs.
I sometimes worry that we nurses have become so focused on our own concerns that we've lost sight of the fact that being a nurse comes with some social responsibility. I had that idea drummed into me as a nursing student in the 1960s. The latest Gallup survey finds nurses at the top of the "honesty and ethics" list of 21 professions for 2008. We keep showing up there, but are we living up to the public's trust?