Health Care Reform: Protecting the Disabled (Part 4)
July 23, 2009
[Editor's note--Below is the fourth part of the interview I conducted on July 19th with Bobby Schindler, the brother of the late Terri Schiavo, whose untimely and unnecessary death in 2005 drew nation-wide attention to the issue of how Americans believe we should care for the disabled in our country. Since that time, Bobby has spoken around the United States about the issues and misinformation surrounding his sister's condition and her painful death and the bigger issues of properly defining what kind of health care needs to be provided for the disabled and providing assistance and support to the families caring for these disabled children and adults.]Question: So, during all this time [after Michael Schiavo began legal action seeking to have Terri's feeding tube removed], you [and] your parents were pitted against most of the media, you had some doctors, and certainly her [Terri's] husband?
Answer: We had no money. Michael had almost a million dollars at his disposal that he was able to use to fight against our family. Our family basically had no money, very little money, to fight against what was happening to my sister.
Question: So,if I'm not being unkind in my question here, he [Michael Schiavo] certainly had the financial resources to provide for Terri's care. It wasn't that he . . .
Answer: He was supposed to. That's what the money was supposed to be used for, for her rehabilitation and therapy. This trust fund that was established for her was supposed to be for her rehabilitation as long as she lived by Michael's own testimony. Yet he changed his mind eight years after Terri's collapse and went on his pursuit to end her life, and the money ended up being used--the bulk of the money being used--to pay his attorneys--instead of helping her to kill her.
Question: If we take a look at what's happened since then, . . . what impact has her case had on the state of Florida and nation-wide on the issue of the care of those who are profoundly disabled but not life-threatened?
Answer: That's a difficult question. With the foundation, we're [seeing] more families that are willing to fight against doctors, against the medical community, when they give a prognosis where their loved one [is given] no chance of any kind of meaningful recovery, where they might recommend to a family that they just allow them to die. Families are now questioning the doctors, and they're willing to question their diagnosis, to want to care for their family member. At the same time, I think as a result of Terri's case, I lot of people right now . . . [have signed] living wills, and I think that that can potentially be very dangerous. I think a lot of people are scared, because a lot of things, as I said earlier, about Terri's case were misreported. But I don't think people realize, in many cases it seems to me, the dangers as a result of going out and signing these living wills. Again, that goes back . . . one of the things that happened in my sister's case, in my opinion, [that] was not a good thing . . . [that resulted in people] going out and signing these living wills.
Question: So, living wills as a by-product, were some of these people who didn't have the funds available to them that should have been made available for Terri, [afraid] that they would find themselves financially unable to care for someone whose life was not imminently in jeopardy but there was profound medical need? I guess that leads to the question where some of the things you've seen since Terri's death financially motivated and people were finding themselves pressured into . . .
Answer: It's all that people don't want to be a burden. Our society is wanting more and more today to eliminate suffering, and therefore, people are-- I think a lot of peole and families are--worried about being a burden to their families and loved ones if they ever became incapacitated. I think that quite [a few] would not want to live like my sister, wouldn't want to live in those conditions, I think it's been used to scare people into signing these living wills and subsequently is the reason for thinkng that and justifying [making decisions like those involving my sister]. What I'm trying to say is that--I get the question all the time--"who would want to live like my sister, someone with a profound brain injury?" . . . I think it is kind of steerin gour ocuntry down the wrong path, and that's what's justifying us killing--there's not [another] way of saying that. But I think the wrong question's being asked.
Question: What's the right question?
Answer: Well, there are people living in these conditions. No one would choose to live with a disability if they had the choice, but that certainly doesn't justify killing them, because they are people living in this condition, even worse than my sister. I've seen estimates that there are 20 [thousand] to 50,000 living in similar conditions. I mean, so what does this mean, that we should start killing all these people, because we want to project . . . . I am not against . . . people have the right to make their own medical decisions . . . someone saying' "I don't want food and hydration, I want to starve to death"; that's their perogative, if they want to make those wishes clear, that's the individual's choice, but [in cases] where we don't know what the person would want, we're morally obligated to care for them . . . . Nobody would choose to live with a disability, but that doesn't mean [that they would want to die]. Who would want to die this way, the way my sister died, by being starved and dehydrated for a period of fourteen days.
I want to stop the interview at this point and turn to Mr. Obama's press conference last evening [July 22, 2009]. Among the statements he made was one citing health care costs as the “the driving force behind the national deficit”. He also identified both the problems with the current health-care system (expensive, difficulty in obtaining coverage, and problems in maintaining coverage) and then offering the solution of universal health care.
In light of the events surround the Terri Schiavo case, the question that has to be asked here is "At what cost, in terms of American lives, will we obtain this universal health care? What are we willing to sacrifice, in human terms, to reduce our health care costs? These are the types of questions that have to be both honestly asked and answered before we can truly say that we have true "universal health care".
Tomorrow, the final part of my interview with Bobby Schindler, as well as instructions as to how to download a copy of the PowerPoint presentation shown on July 20th at the health care forum in Wausau, Wisconsin.
Until then, be blessed.
From the Editor's Desk ArchivesHealth Care Reform: Protecting the Disabled (Part 3) (July 22, 2009)
Health Care Reform: Protecting the Disabled (Part 2) (July 21, 2009)
Health Care Reform: Protecting the Disabled (Part 1) (July 20, 2009)
And Liberty and Justice for All (July 13, 2009)
