Caring Isn’t Just Limited to Your Shift
There is a family at work that I have gotten close with. Understandably, they want nothing but the best for their baby.
Their daughter is five and a half months old and has had one of the rockiest starts I have ever seen. So far, she has defied the odds, but it seems that her odds have recently grown worse. Her mom (we'll call her Betty) is doubtful that the recent pronunciation of fixed pulmonary hypertension with cor pulmonale is the end of the line for her little one. She is certain that there must be other things that we can try and has spent countless hours researching alternatives like inhaled iloprost and calcium channel blockers.
I am acting as the mediator, a person who understands her concerns and supports her. When she is doubtful of what step they have taken next, I've tried to explain their line of thought to her. We have discussed tests, signs and end-of-life issues. I have talked to her about chest CTs and pulmonary consults, nitric oxide and bronchodilators. I am ready to support their decision if or when they decide to start end-of-life care.
Sometimes I think that we need more mediators. Physicians and clinicians can sometimes be confusing, technical and detached despite their best efforts. Sometimes parents can feel ill at ease with clinicians that are brilliant but cold. If there were more mediators, I think we could bridge that gap.
What really got me was that when I was talking to Betty, she thanked me for caring even though I wasn't at work. Caring isn't limited to three 12-hour shifts a week. I am invested in my patients and their families.
I know that some RTs keep a distance to protect themselves, but I can't. I have been the scared family member, I have been confused by "doctor-speak." I have discussed treatments and researched alternatives. I have had to make the hard decision to withdraw support. It is a terrible place to be, even worse when you feel like the people who are caring for your loved one don't truly care. I don't want any of my families or patients to feel like that. Ever.
As for Betty and her little one? Only time will tell. I will, however, do my best to make it easier for everyone involved.
-- Stephanie