Table 2:
Themes Describing Parental Conflict Regarding the Tracheostomy Decision
| Theme | Sample Quotes |
|---|---|
| No Choice | “If I knew there was any other option, I would have taken it. We chose the tracheostomy as a last resort to save our baby’s life.” “As it was explained to my husband and I in our ‘family meeting’ with the attending Neonatalogist, the trach was the only option for [our son] to ever be able to leave the hospital. If we chose to not do the surgery, we would be ‘letting him go’ and he would not survive without the trach and ventilator. Looking back, I feel that [our son’s] condition was unfairly evaluated as more dire than it actually is. I still wonder if the trach would have been necessary if [our son’s] condition continued to improve.” |
| Uninformed | “I don’t know what the options are. What are the benefits of a trach vs. intubation? Is there a possibility she might get better on her own?” ‘We had to do a lot of research online on our own so it has taken me long to decide because I do not feel informed.’ |
| Maintaining Hope | “My son may need a trach but we are not sure yet. I want to do what’s best for my son but I also hope he does not need a trach.” “The doctors would not give me a full spectrum of his possible prognoses, only the worst case scenarios. When asked about the best case, they avoided the question. Not because best case scenarios may not exist, but because even talking about best case scenarios might mean that, we the parents, would ignore the other end of the spectrum. As a result, any decision I made would not be informed.” |
| Putting My Child’s Needs Above My Own | “I am not as sure about what to do as his mother. I want what’s best for him” ‘I know my son should not get a trach... I am making the decision that is best for my son, NOT the decision that is best for me’ |
| Felt Pressured | “The doctors had already made the decision to place the trach. All discussions and answers to questions were designed to convince me to agree with their decision.” It would be better if they (physicians) didn’t mention it so many times, maybe tighten up the communication channels and not have so many different people saying the same thing. I understand it is their job to take care of [my son] medically, but they should also be aware of our family’s emotions. |
| Weighing Options without Judgement | “‘I changed my decision between Friday and Monday from trach to no trach and I felt judged by the new nurse... she treated me like I hadn’t thought at all about it which is clearly NOT the case. I prayed, paced, and cried about the decision, so it set me into orbit that she thought I could be so careless.” “I hear the word tracheostomy and I just worry. I worry what my family and my community will think.” |