Three-year-old Christy* has been in the hospital’s pediatric intensive care unit (PICU) since birth, when she was diagnosed with McCune-Albright syndrome and multiple other conditions that left her severely compromised and ventilator dependent. Although McCune-Albright generally is treatable, the early onset and severity of Christy’s case indicate a poor prognosis.
Her health care is paid by Medicaid and administered by a Medicaid HMO. The HMO determines that Christy is chronically ill and should be transferred to a suitable nursing home. However, because of the complexity of her care and her ventilator dependence, PICU staff believe she would die soon after such a transfer. The first two times the HMO seeks to transfer her, the hospital intervenes successfully to thwart the attempt.
The third time, though, their efforts fail. Christy is sent to a local nursing home that accepts ventilator-dependent patients, including children.
PICU staffers are distraught. They had grown to love Christy and believed she knew the PICU. Even though she couldn’t talk, staff members believe she communicated through facial expressions and by moving a finger—and she didn’t hesitate to let her thoughts be known. Like her parents, they fear she will die (most likely from pneumonia) if transferred to the less acute setting of a nursing home.
They’re right. Six weeks after her transfer, Christy dies of pneumonia. At her funeral, her parents tell mourners that from the moment she arrived at the nursing home, she “turned her face to the wall” and “decided to die.”
PICU staff members are deeply distressed when they hear of her death. They think they should have done something more to help Christy. But what could they have done?
I once heard someone say the greatest tragedy of our age is that we often must choose not between right and wrong but between wrong and wrong. In an earlier era, Christy would have died quickly. She was born compromised, and she died compromised—an almost inevitable conclusion of her life story. Surely, her eventual transfer out of the PICU was inevitable. The case manager or social worker assigned to her must have bargained hard with the HMO before admitting defeat the third time.
I don’t think there was a right thing to do in this situation. It may have been possible to take this situation public, to raise funds for Christy’s care from kindhearted persons in the community. Perhaps the hospital might even have been willing and able to swallow the total cost of her care, writing it off as a loss.
But to what end? If she couldn’t exist outside of a PICU, what future did she have? She was going to die—and sooner rather than later. Undoubtedly, being placed in the care of strangers (I’m assuming the care given in the nursing home was clinically adequate) plunged little Christy into despair and hastened her death. Perhaps if she’d gone home with all the assistance necessary, her life might have been a bit longer and a bit brighter.
What could the hospital have done? If her parents were able to care for her, perhaps the hospital could have arranged for home care and made sure appropriate equipment was available.
What could the nurses have done if Christy could have been discharged for care at home? They could have taught her parents how to perform the clinical care she needed.
What could the case manager have done? She could have bridged the gap between hospital and home, coordinated activities, and helped her parents adjust. This, of course, assumes an ideal world where parents are able to learn the care required and where all necessary community resources are available.
No one did anything wrong—and therein lies the tragedy. The question isn’t, “Did we do enough?” but rather, “How much is enough?” There’s no satisfactory answer to this question. The hospital staff needed time to grieve and ideally, help should have been sought for them, perhaps in the form of grief counseling, to help them work through their emotions—both grief and guilt.
Can all such situations be prevented? Probably not, and our hearts will break all over again with each one.
*Name has been changed to protect confidentiality.
Dr. Leah Curtin, RN, ScD (h), FAAN, is Executive Editor, Professional Outreach, American Nurse Today. An internationally recognized nurse leader, ethicist, speaker, and consultant, she is a strong advocate for both the nursing profession and high-quality patient care. Currently she is Clinical Professor of Nursing at the University of Cincinnati College of Nursing and Health. For over 20 years, she was the Editor-in-Chief of Nursing Management. In 2007, she was appointed to the Standards and Appeals Board of DNV Healthcare, a new Medicare accrediting authority. Dr. Curtin can be reached at LCurtin@healthcommedia.com. Disclaimer: The views and opinions expressed in this article are those of the author and do not necessarily reflect the opinions or recommendations of the ANA or the staff or Editorial Advisory Board of American Nurse Today. Visit americannursetoday.com/SendLetterstoEditor.aspx to comment on this article.