February 4, 2013 | Posted By Bruce White, DO, JD

A recent blog about a tragic situation in Tennessee highlights how difficult it is to create a “fair” healthcare system.

In this case, the patient is a nine-year-old severely disabled girl. She is maintained on a ventilator and feed through a tube. “She requires medicines and breathing treatments around the clock.” “She has to be suctioned every ten minutes or so to avoid suffocating on her own saliva.” She responds to family and caregivers minimally. And, she resides at home with her parents. Her father works and her mother is disabled with severe arthritis. Because family members cannot take care of her 24 hours a day, seven days a week, home health nurses provide most of the moment-to-moment care. However, home health nurses are very expensive, much more costly than if the patient were a patient in a nursing home (about $1000 a day).

The crux of the controversy between the parents and Tennessee’s Medicaid program – TennCare – is home care versus nursing home care. The parents want to keep their child at home with 24 hours nursing support, but TennCare will only pay for nursing home care in a skilled care facility.

Of course the parents are distressed about the possibility of their daughter being placed, and cared for, in a skilled nursing facility. They see this as “a death sentence.” The father reports: “She cannot live without someone with her all the time. She has to have the nursing to live … .”

Unfortunately, both the state and the parents have good – and substantive – points favoring their positions. The parents and home health nurses will probably give minute-to-minute care. As a result, more than likely, there will be fewer hospitalizations to deal with complications if the child is care cared for at home. On the other hand, care at home will cost TennCare – and the state of Tennessee – about twice the amount of skilled nursing facility placement. The state could reasonably make the claim that they could care for two similarly situated children in a nursing home for the cost of one at home.

The cost of care is the real debate. This case vividly illustrates the tension between choice, cost, and state regulation to balance the concerns. How well the rules are drafted and sustained will be the key. But balancing this tension will be the key to a “fair” healthcare system. “A just health care system will be concerned both with promoting equity of care—to assure that the right of each person to basic health care is respected—and with promoting the good health of all in the community. The responsible stewardship of health care resources can be accomplished best in dialogue with people from all levels of society, in accordance with the principle of subsidiarity and with respect for the moral principles that guide institutions and persons.”

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.
1 comments | Topics: Affordable Care , Distributive Justice , Medicaid



Stella wrote on 09/11/14 6:54 PM

The cost of care is a very real problem among people of the low-income bracket. Even with Medicare and Medicaid, patients who receive government benefits receive diminished quality of health care, and even so, they have to wait for months to see whether they are approved for governmental health coverage. Without money, people are pretty much left out in the dark.

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