I spent yesterday talking with men and women who help to care for seriously ill infants and children. I also talked with some parents. It’s always a punch in the gut to confront in some granularity the challenges that people actually face–not only the children and their parents, but the people who care for them, too.
Families’ financial challenges are the most elemental. Every person I spoke with made some matter-of-fact comment of the form: “When your kid is this sick, you will run out of money.” These challenges go beyond the standard insurance and health policy wonk debates we cover at TIE. One mother described her basic cost of gas, $5 hospital cafeteria sandwiches, and the $16 daily parking fee when she has to travel five hours each way every month, to take her child to a leading medical specialist. Life intrudes in other ways. Young patients tend to have bored siblings who want to get out and do stuff rather than spending all day for weeks in the hospital. That costs money, too.
Then there is lodging. Ronald McDonald houses request a voluntary donation of $10 per night from families who stay there. Many, many parents would like to pay that, but can’t. When such facilities are unavailable, parents who can’t spend $80 per night on a hotel will bunk out in their child’s room, in a waiting room, in the worst case the family car. That works for a few nights. You don’t want to do that for much longer.
It’s ironic. Our health care system will spend hundreds of thousands of dollars to provide vital high-tech care for a patient with cancer, congenital heart problems, or any number of other ailments. Yet all too often, the $4,000 required to support a more humane experience for that patient’s family outside hospital walls proves out of reach. Things are better than they used to be, especially in advanced pediatrics, where the best physicians, nurses, and social workers embrace family-centered care. We do so much less for the much larger number of families caring for very sick adults. The patients aren’t as cute. Their families’ pain is no less acute.