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November 11, 2019

Safe Work-Hour Standards for Parents of Children With Medical Complexity

Author Affiliations
  • 1Department of Medical Ethics, The Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania
  • 2Mary Ann & J. Milburn Smith Child Health Research, Advocacy, and Outreach Center, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, Illinois
  • 3Division of Academic General Pediatrics and Primary Care, Department of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, Illinois
  • 4Department of Pediatrics, Perelman School of Medicine, University of Pennsylvania, Philadelphia
  • 5Department of Medical Ethics and Health Policy, Perelman School of Medicine, University of Pennsylvania, Philadelphia
JAMA Pediatr. 2020;174(1):7-8. doi:10.1001/jamapediatrics.2019.4003

Home nursing care is often warranted—but, too often, not reliably available1—for children with medical complexity (CMCs) who live with serious and sometimes life-threatening conditions and who usually depend on medical technology for their well-being and safety. When these children reside at home, parents or guardians are expected to provide medical care during many, or even all, hours of the day and night. Parental duties might include administering medication, providing enteral tube feedings or parenteral nutrition, performing chest physiotherapy, and perpetually monitoring the child for signs of critical decompensation, among other tasks. Many of these caregiving activities involve sustained attention and physical labor and must be performed multiple times each day.

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    1 Comment for this article
    Parent of Child With Medical Complexity
    Ann Schrooten, B.S. J.D. | I am a parent of a child with medical complexity. No academic affiliation
    I am a parent who cared for a child with medical complexity (trach, ventilator dependent) for 15 years. (He ultimately passed away in 2014 from the consequences of his disease - MEB congenital muscular dystrophy.) I have three other children and my husband and I both work full-time. Our nursing was generally limited to the hours we were at work, with an occasional weekend shift. Therefore, our "respite" from the demands of his care was when we were at work.

    The issues raised in this article are long overdue for consideration and need to be addressed. However,
    there is a lot here that gives me cause for pause. The suggestions are well intended, but I see the potential for rules governing how many hours parents can care for their medically fragile child having unintended consequences (which this article recognizes). And getting insurance companies and Medicaid to cover more hours of skilled nursing care to make sure parents aren't "overworked" will likely never happen. The other big issue is where do we find more qualified nurses to cover the extra hours parents need? Finding qualified nurses to cover the hours parents currently receive is a huge challenge. The last thing we want is for our kids to end up in institutions because someone has decided that it is "unsafe" for us to be awake caring for our child more than a specified number of hours.

    This is such an important issue and recognizing the challenges placed on parents caring for children with medical complexity is monumental. I appreciate your efforts in tackling such an important issue. But, while the suggestions in this article give me hope, they also scare me.