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 myamericannurse.com/SendLetterstoEditor.aspx to comment on this article.
If treatment necessary to sustain life is not going to be provided, it may be best to ammend the law, and enable a swift and merciful death in those cases where there is no hope of recovery, and the decision is made by parents and caregivers – with the agreement of an ethics committee — to withdraw treatment.
I agree with Nana in many ways, especially when it is clear from birth that there are very low to no odds of survival. The problem with problems like Christy’s is incrementalism…the initial diagnosis was not life threatening, but forst one thing goes wrong – and it’s treated. And than aother and it’s treated, and then another…and soon the impact of one after another is owerwhelming! Both in terms of survivability and costs…These are no easy problems & there are no easy answers!
We need to start thinking in terms of the cost to society for some of the medical “miracles” we now can perform. How many other children (in the US or the world) could have received immunizations, or well-child care, or other minimally expensive, life-benefitting care if the expense of prolonging a very limited “life” and preventing this one child’s death could have been avoided? In this case, there is also no way to determine if death would have occurred at the same time even in the hospital.
I do not believe that quality of life issues were meant to be decided by anyone other than the individual themselves or those taking direct responsibility for them. It is possible for medical personell to make an immediate decision in critical incidences but after that it becomes much more complicated. My heart goes out to Christy, who never had a choice and to her parents who have to deal with complicated loss. There is so much we do not know.
Did anyone think to provide counsseling and support for the staff? While tragedies are not uncommon, having cared for a child from birth to several years of age – and then to lose her – is unusual! Some debriefing and ongoing support is in order here!
For more on McCune-Albright syndrome see the MAGIC Foundation.
We need to accept the fact that quality of life is inportant. What was gained by keeping a child with this problem alive?
Medical science is great but we need to measure the outcome better.
The staff did not say they ‘believed’ that Christy communicated wiyth them. The staf said she DID communicate with them. The author does not remember writing that the ‘staff believed…’; however, this is indeed what the article says. So, I apologize. The point of the article is not what they believed but rather the shared tragedy that was Christy’s life – and the inevitable questioning and pain that accompanied decisions about her life and death.
The author says ‘the staff believed’ Christy thought or did this or that. Did the child communicate with them or did she not? Don’t they know the difference between what they ‘believe’ and what a patient did? Or is this eith condescention or an unwillingness to take responsibility for what they thought and what evidence, if any, they had for thinking this?
It is pretty clear that Medicaide was paying for the child’s care through an HMO of somw sort…and even though their decision was driven by cost concerns ( a real problem for me!), it was the right one!