1. Stonecipher, Diane BSN, RN


The current algorithm overemphasizes the role of the machine.


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My son, now 16 years old, was brain injured at birth following complications of labor and delivery. He is blind, functionally quadriplegic, and severely cognitively impaired, functioning at the level of a six-month-old infant. Since his birth my husband and I have cared for him at home with little mechanical intervention. Although we are his primary caregivers, we've hired others-typically local university students-to assist part- time with his care. My son can swallow but can't feed himself, so he's orally fed a diet of pureed foods and liquids five times a day. He cannot urinate on his own, so we massage his bladder every three hours. We administer aggressive pulmonary toileting-clearing secretions from his trachea and bronchi using postural drainage and percussion-twice a day. With this care, my son has never required suctioning or had aspiration pneumonia, a urinary tract infection, or skin breakdown.

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When my son reached puberty, the associated physical changes made his care more challenging. His increased weight and long, unyielding limbs made it more difficult to transfer and reposition him, increasing the risk of bone fracture, and his scoliosis worsened, compromising his breathing and digestion. As his care became more demanding, it became harder to find caregivers equal to the task. We decided to look into skilled nursing care.


For several years my son has been on a Medicaid waiver program set up by the Texas Department of Aging and Disability Services. The program, Community Living Assistance and Support Services (CLASS), provides Medicaid benefits to families caring at home for medically dependent children who would otherwise require care in an intermediate-care facility. In offering limited funding for "attendant hours," it has helped to pay for our hired caregivers (attendants can assist with activities of daily living but cannot give medication and aren't required to have any training). But when we applied for funding for skilled nursing care, which is available through a related program, we were denied. I was astonished and saddened to learn that unless my son's care involved mechanical intervention, he didn't qualify.


The current algorithm defines "skilled nursing" in terms of the machine, not the nurse. The program would pay for a nurse to administer tube feedings or catheterize or suction him. It will not pay for a nurse to feed him orally, massage his bladder, or provide pulmonary toileting. The very things we've done to avoid these procedures are considered neither "skilled" nor "nursing."


In the hospital, mechanical interventions may be the most efficient or possibly the only option. But in the home setting, that often isn't the case-and there are other gains besides efficiency. My son is sensitive to his environment, especially to sounds and touch; we learn a lot about how he's doing while we care for him, and he benefits through interacting with us. For example, when he's in pain or tired, he eats slowly and without interest or coordination; when he feels well, he eats eagerly and appears to enjoy the attention of whoever is feeding him.


I studied and then practiced nursing from 1974 through 1992, during the technological and pharmaceutical revolutions in health care. I learned to use machines as an adjunct to my hands. But nursing's core mandate is still to provide the best, most compassionate care possible, with or without machines. Our expanded role must not come at the expense of that principle. My son doesn't need machines to survive, but he does need others to do for him what his body cannot.


Nursing taught me well that the "little things" are often the most important. My son's health depends on their constancy. I love my son deeply and I'm grateful that my chosen profession has helped him live his best life. But neither my son nor the nurses whose abilities he needs should be rejected because of a narrow view of what constitutes skilled nursing.