Mary Ellen Mannix’s life was turned upside down when her baby, James, died while in the care of a hospital in the US. In this piece, she talks to me frankly and openly about her experience.
LITFL Editor’s note: This is part one of a three-part series of posts on medical error that tie in with an article by Tessa Davis in the Medical Journal of Australia Insight. See I: The doctor who exposed his own error; II: The victim of medical mistakes; and III: The Changemaker
James was her fourth pregnancy after three normal, healthy children, and like most of us would, she assumed that all would be well fourth time round. At her antenatal scan, it was picked up that James had a coarctation of the aorta. After birth, this was confirmed on echo but it was made clear to the family that was an otherwise healthy and stable baby and that it was unlikely that he would require open heart surgery.
He was taken to theatre for what the parents understood to be a balloon angioplasty. Mary Ellen told me that it was at this point that the poor communication started and the clinical situation went from bad to worse.
They were left for four hours without any communication and then “we found them transferring him without having spoken to us first”. She tells this as a side-detail and really to illustrate that it set unsteady foundations in the staff-patient relationship.
For whatever medical reasons, the surgery needed to become more extensive – James was put on bypass and had open heart surgery. He required ECMO, had difficulty weaning off the ventilator, had pneumothoraces, neurological deterioration, further surgery for a lobectomy, more ECMO and re-repair of the coarctation. After this surgery he deteriorated further, “he was swollen to the size of a nine month old, he was purple and bleeding, and the surgeon was nowhere to be found”. Eventually the family agreed to withdraw care.
Mary Ellen feels that she wasn’t consented properly for the initial surgery, but regardless of the technical ins and outs, it is clear that the family’s expectations and understanding differed wildly from the medical professional’s intentions.
As well as issues around the explanation and consent of procedures, there were numerous times when Mary Ellen felt completely abandoned by the staff and left on her own without information. This happened during periods of resuscitation where she was left alone for hours in the Family Room, and the next thing she knew “there were two physicians at the door who said he had to be taken to surgery urgently” – there was no time for Mary Ellen to see her son before theatre.
This is something that will be familiar to all of us – it is so easy to get caught up in a resus and forget about the family. On NICUs or the ward, the area is usually curtained off and everyone becomes so focused on the patient that they forget about the relatives.
She also felt that communication from the supervising doctor post-surgery was missing and she had the sense that they were being avoided, “we ended up running into him in the hallway and he looked uncomfortable to see us”. Whether this is reality or merely Mary Ellen’s perception is irrelevant – these exact issues should be lessons learned for us.
Dodging difficult conversations with families is so tempting. It could be that you just don’t get on with them; or that they just have ‘too many’ questions; or that there has been an error or suboptimal care and you just don’t know what to say.
Previously, Bryan Bledsoe, an ED physician in the US, talked with me about being up-front with patients and apologising if needs be. However, it’s much simpler to just move on – as busy professionals we have plenty of other things to be doing instead. We really should confront our fears – after all, it’s not about us, it’s about the family. One of the best pieces advices I have heard is ‘spend twice as long with the patients you don’t want to talk to’. Sometimes (but not always) patients are happy just having someone being open, honest and spending time with them.
After withdrawing care Mary Ellen and her family “were asked to leave while they prepared James…Three hours later I was allowed back in – by then he was ice cold. No one was made available to us in those three hours – there was no pastoral counsellor, no staff with us”.
Talking to Mary Ellen, it is clear that she naturally feels devastated by the whole experience, including the aftermath. She started a legal battle with the hospital but with all the stress she felt that the case had lost the focus of what she was trying to achieve after James’s death. Her aim was not to put individual staff members through a battle and she is certain that none of them set out to deliberately cause harm to her son. The court found that there was negligence but did not assign responsibility of her son’s death to that negligence. She didn’t pursue things further, and let it rest to focus on her other children.
Now she campaigns for patient safety through James’s Project and is motivated by bringing something positive from her loss – “if my son had to lose his life then we’d better learn something from it”. She often works alongside the same attending physician that treated James and her key message is that patients need to see “the human in the white coat”. Mary Ellen aims to “create a space where clinicians and families can have a conversation” and she gives guidance to other families on how to communicate with hospital staff.
Trying to distance ourselves from patients often gives the wrong message. Whilst it might be more comfortable for us, it leaves families like Mary Ellen’s feeling isolated and helpless.