• Making care more bearable for families

    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.


    • Thanks

    • Geographical limitations are not recognized enough by most health care writers. I am on call today. I just got back from a very small hospital an hour away we now cover. The patient had a condition which could be treated much better at our main facility. However, that means that the wife would not be able to make the trip to visit. That means that no one would be available to go home in the middle of the day to walk their dog, which they both love just like it was one of their kids (who have all moved away).

      Locally, back in civilization, people are generally unwilling to travel a few miles to a different hospital. They have whole support structures from family to ministers that are set up to help at a particular facility. Many patients are unwilling to go somewhere new when under stress, ie a new cancer diagnosis or a needed major procedure.


    • As a resident manager of David’s House , a beautiful private nonprofit home away from home for families of sick children at Dartmouth Hitchcock Hospital , like a Ronald McDonald House, one of the saddest and most frustrating things I saw was student loan collectors that would not work with parents who had run out of forbearance time to reduce or temporarily waive student loan payments despite their medical emergencies. Even the federal government will operate this way when a student loan goes into collections. Will not work with the debtor at all. We had collection agencies tracking down parents at our facility because, of course, parents who were living there temporarily needed to make the phone number known instead of keeping it confidential. The student loan crisis: another problem that you economists should address.

    • Sorry, but the most recent changes in student loans are all designed to buy votes among the occupy. They add new moral hazards:
      – First, they provide favorable repayment terms and the potential for a windfall for those who stretch out their loan repayment period to 20 years,
      – Second, they encourage financing higher education with debt over savings, and
      – Third, because of the option to limit repayment to 10% of so-called “disposable income”, they also suggest that the individual can take on additional debt.

      It is quite obviously a subsidy for those who would secure high cost education from a private university, or post-graduate education. It is not limited to those who enter public service. And, there is no wealth test.

      With respect to health care, I expect you will soon quote the Patient Protection and Affordable Care Act of 2010, Section 1501(a)(2)(H), that “50% of the personal bankruptcies” in America are so-called “medical bankruptcies”. This assertion by the Democrats who passed the bill obviously relies on a study by Himmelstein and others. It was the subject of a hard-hitting advertisement by AARP – in support of health reform. In their most recent update of that study, the “medical bankruptcies” discharged an average of ~$44,000 of debt, of which an average of ~$5,000 was unpaid medical bills. While averages can be very deceiving, that is all the academics reported. So, my observations are:
      – First, surely, if these individuals only had $39,000 in debt, but $0 in medical bills, they surely would not have declared bankruptcy, right?,
      – Second, the study fails miserably in that it should have compared those with medical debts or all sizes – comparing those who declared personal bankruptcy and those who did not declare bankruptcy, and
      – Third, read Note that Professor Todd Zywicki, confirms:
      There is no evidence that there has been an increase in the frequency or severity of job loss or income interruption as a result of health problems. And, there is little evidence that medical debt is a major causal factor in Bankruptcy filings.

      The oath, “first do no harm”, needs to be applied to legislation and executive orders such as those regarding health reform and student loans.

      With respect to the families of sick children and adults, it is important to remember that Americans are unwilling to pay for the health coverage already in place. Simply, they want the best coverage YOUR money will buy. As our former director of CMS once said, “Any health care funding plan that is just, equitable, civilized and humane must, must redistribute wealth from the richer among us to the poorer and the less fortunate. Excellent health care is by definition redistributional.”

      Obviously, many would prefer taking that an additional step for those families that fail to prepare for financial challenges beyond the medical bills themselves.