What are logistical concerns families have?
One logistical concern families have is traveling here. For example, how far away does the family live? Will they drive or do they need to fly? Medically, does the patient have any stipulations on whether they can drive or fly? Then there’s the cost of either type of travel. There are several agencies that offer free flights (either small commuter airplanes or commercial airline tickets) for families with a financial need and medical need to be seen/treated at the VAC.
Once families determine how they’re going to get to Boston, they have to make plans for accommodations. If a patient is being admitted to the hospital for a procedure, one parent can always stay with the child at the bedside. If patients live far from Boston, it’s not unusual for the physicians to ask families to stay in town for several days after discharge before returning home for monitoring. If that’s the case, the families will need to find accommodations for this period of time also. Another time other accommodations would be needed is when there’s not a planned admission or there’s more than one parent with the patient.
Brooke Corder, MSW, LCSW
How do you help families decide on treatments?
I think there are lots of families that would love somebody to tell them what to do. Providers here are not likely to do that, and I’m the same way. Instead, what I would do is help them think it out. For example, I would ask a parent “What do you see the pros are? What do you see the cons are? What’s the most important thing that you would want addressed or what’s the most important thing that you’d want to avoid?” Then I use that information to try and help them with their decision, whether it’s literally written out or just kind of reiterating back, “So, you’re saying that you would really like to be out of pain, but you don’t want any chance of x happening. Well, what I heard the surgeon say is there is some chance that x would happen. It’s a small chance, but if you’re saying that that’s not a risk you’re willing to take at all, it sounds to me like what you’re saying is this might not be something you want to do.” I wouldn’t make any suggestions but I could have them talk about it and then put their word and desires back to them because sometimes when we hear somebody else say what we said it sounds different, or writing it down to look at… I think having people articulate what’s most important, what’s least important, and what’s nonnegotiable. Ideally families can then work out the plan that makes the most sense for them.
Brooke Corder, MSW, LCSW
Do you have any travel advice for families?
If patients and families are coming to the Vascular Anomalies Center at Boston Children’s Hospital for treatment, I recommend purchasing a one way ticket, not a round trip ticket. It’s often tough to know when a patient will be ready to return home and all the change fees and the difference fees can be incredibly expensive. Therefore purchasing two one-way tickets is often a cost saving strategy. I would also recommend contacting the Vascular Anomalies Center and ask for travel assistance/resources if families have any questions at all.
Brooke Corder, MSW, LCSW
Is it ever hard for families to coordinate their care in a different part of the country?
I often speak with patients and families about coordinating their care in different parts of the country. For many families seen in the VAC, this is their first exposure to a set of experts who have seen other patients with similar conditions, and it’s a natural desire to want to have all their medical care done at Boston Children’s Hospital. Clearly this is very difficult if patients live in California or even somewhere as close as Connecticut, and it’s not very helpful for anyone in the family to have to come to Boston for all their medical needs. The goal of the VAC providers is to educate parents and local providers so that as much care as possible can be done closer to home with our support and input.
[Later]
It’s always wonderful to hear from families once they’ve made this transition. Most families really do make that transition, even though most of them think that there’s no way that will happen. The timeframe for each patient and family is different but I do believe that parents will learn their child’s needs and, for example, be the best judge of when the child has an infection that can managed at home or needs emergency care.
Brooke Corder, MSW, LCSW