It’s hard to know which doctor is in charge.
A bereaved mom and parent advocate and a pediatric hospital chaplain talk about how in a hospital there are multiple people who care for the child and how confusing that can be for a parent who is used to having the one pediatrician. It’s important that parents feel free to say, can you tell me what your role is? Are you on my child’s primary team? Or are you on a consulting team?”
It’s exhausting to sort out all the different perspectives from specialists. Parents can ASK FOR HELP.
A bereaved mom and parent advocate and a pediatric hospital chaplain talk about how it is not uncommon for sub-specialists to come into the room and offer their view, their perspective and their advice, then to have another one come in and say something that sounds contradictory. This is stressful. Parents can ask for clarity.
Getting Clarity—Parents can say, “This is what I’m worried about. Should I be?”
A bereaved mom and parent advocate says for parents -- "if you find yourself in a situation where the team isn’t helping out, you can say, try. "This is what we understand is going on, are we correct that this is in fact going on? This is our major concern. Should we be worried about this?" Meanwhile, providers can lead with, "what is your main concern? Or what is your thinking, what is your understanding of what is going on?"
Hospital teams don’t want families to be confused.
A bereaved mom and parent advocate and a pediatric hospital chaplain talk about how parents and providers want the same thing – what’s best for the child. Of course, it's a lot of information for parents to take in so it's helpful when a family can say “I'm confused, what is your role or ask the nurse, can you help tell me who will be visiting my child today, and what is their role, what do they do, how do they help care for my child?”
There will be communication challenges. If you’re wondering, just Ask.
A bereaved mom and parent advocate and a pediatric hospital chaplain talk about how parents will experience medical information overload and may be reluctant to ask questions. They may feel uncomfortable questioning the ‘experts’ but it is OK and good to ask questions.
Providers can behave differently on different days. But they always care.
A bereaved mom and parent advocate observes that on any given day a provider may be different -- may have a little social time beforehand and then sometimes they just sort of get to work and may appear a bit cold and distant. Sometimes families will misinterpret that thinking, oh, he's rather cold, she's rather distant, when in fact they are using all of their powers of concentration to get really helpful information. Also, providers are human beings and they may have enormous amount of time one day and then no time the next day.
Self-Care: Providers will encourage parents to get sleep and get some air.
A bereaved mom and parent advocate and a pediatric hospital chaplain explain that getting sleep is hard but critical. When providers nudge parents to get sleep, it is out of a general sense of concern, not of judgment. And providers can help parents get that sleep or break to leave the child’s room and get some air.
Parents feel pressure to be “liked” by their child’s medical team, but need to feel comfortable expressing their concerns.
A bereaved mom and parent advocate shares that parents may feel pressure to be liked by their child’s team. “This can be hard to navigate when you have a valid question or valid concern and feel like you don’t want to voice it because you don’t want to risk jeopardizing the good relationships that you have.” She shares what she did in those moments.
For Providers—Self care is important for providers too!
A pediatric hospital chaplain notes: the work that we do is very difficult. It’s hard to witness suffering and -- and that takes a toll on those of us who are care providers and it really is vital for us to do our own work and figure out what gives us strength and courage and rest so that we can come back and be strong in our work.
For Providers—Ask families about their life OUTSIDE of the hospital, to better understand their big picture.
A pediatric hospital chaplain notes that what providers see in the hospital is but a small window of time and that families have lives and responsibilities outside of the hospital that have not stopped just because a family’s child is in the hospital.
For Providers—Acknowledging feelings of failure. Encouragement to honor the care you and others have provided.
A bereaved parent and parent advocate and a pediatric hospital chaplain talk about how much providers care about the children and how hard it can be for them when their efforts cannot keep the children free from suffering or from death.
For Providers—Child death impacts us and takes a toll.
A bereaved parent and parent advocate and a pediatric hospital chaplain note that repeated child deaths take a toll on providers and that providers need to check in with themselves, seek help if necessary and take care of themselves, “So that you can come back to the next family feeling kind of, present and grounded.”