How can families and the medical team work together well?

What can families and medical teams do to make sure they’re working well together?
I think team meetings are really important, and just having that open communication. Having the parents or caregivers available during rounds is great so they can ask questions and be updated daily on what’s going on. The team meetings are really good, though, because they can bring everybody together, make sure everybody’s on the same page and the caregivers really have the opportunity then to voice their concerns and feel like everyone is listening to them.

Kate Huyler, CCLS, Child Life Specialist, Cardiac Intensive Care Unit

 

I don’t think there’s a big mystery there: I think it’s open communication. I think people have to feel comfortable with each other, saying what they think, bringing up their concerns, and that goes both ways. Certainly the providers have to listen to the families because they are all different, they have a unique set of concerns and issues, and take their concerns seriously. But I think it goes both ways. I think physicians have to give bad news sometimes, they have to make demands on the families that are sometimes difficult. We try to help them with some logistics and how to get these things done, but I think sometimes they’ll have to abide by the rules. Transplantation is a very protocolized field. We have a certain number of visits that we have to do, certain lab tests that we have to get with some frequency, and we rely on the families to do their best with us so that we can take the best care possible of the children.

Maureen Jonas, MD, Medical Director, Liver Transplant Program

 

Melisa: Communication is a big, big issue. We need to make sure that there’s communication back and forth from the family to the team and vice versa. We help with that. Sometimes things happen very quickly in the hospital, it’s very fast-paced, and there can be issues of trust between the team and the parents. In psychology, we try to facilitate communication so we can all work together as a team.

Kris: It’s about respecting the knowledge that each person brings to the table. We can have the best ideas in the world about how to help with an adherence issue, but if that’s not going to work for the family because there’s some sort of barrier, then we’re going to have to figure something else out. That’s why communicating from the beginning and coming up with a plan together can be much more helpful than just coming in like, “We’ll just do this.”

Melisa: We always say that doctors are the experts in their respective fields, but parents are the experts on their child, so we have to come together and figure out how to make it fit.

Melisa Oliva, PsyD and Kristine McKenna, PhD, Transplant Psychologists

 

What sort of resources do you have available for families who need them?
Lodging is usually a huge issue, again, for multivisceral patients who are coming from out of state or sometimes out of country… I think lodging is probably the number one problem that we usually run into with families, because when you’re expected to stay here, you have no idea how long it’s going to be before the transplant happens, and then with multivisceral, we say for six to twelve months after transplant you need to be nearby and able to get here and be monitored under our care. That’s a really long time to expect a family to uproot from somewhere, and oftentimes a parent, a father and other siblings stay home, and the mother is here with the child, or a mother is here by herself (because there is no father in the picture) and has another child with her, so the lodging is huge. There’s never enough. There’s always a wait, and I think the Center for Families does an amazing job accommodating as many people as possible, but you can only work with what you have…Then for parents, we can help them with letters to their employer to help them get FMLA (the Family and Medical Leave Act) to get time off or to help them keep their time off. We have a financial coordinator advisor, who can help wrangle the ins and outs of the insurance, and we do have access to a transplant special needs fund for emergencies. We try and connect people to as many resources as possible to help support them. We have little things in the hospital: we have meal vouchers, we have gas cards to help pay for gas, we have grocery cards or Au Bon Pain cards, CVS gift cards, things like that: little bits add up.

Emily Holman, MSW, LICSW, Social Worker, Multivisceral Transplant Program