On the same day, I saw Mitch Daniels giving interviews saying that we need to confront the high costs of end of life care , and I heard that the British Medical Journal has finally retracted Andrew Wakefield’s notorious vaccine-autism study as fraudulent. Mark Kleiman declares “Game, set, and match,” in response to this news.
These headlines might seem unrelated. I think they are connected. Both headlines are welcome. Yet I fear that both seem like more of a victory for sanity than they will turn out to be. Neither addresses the underlying distrust of organized medicine at the root of both death panel demagoguery and the vaccine scares.
Health reformers, Democrats, Republicans, and independents face many challenges: One of the biggest challenges is to convince ambivalent patients, doctors, nurses, and the broader society to actually embrace comparative effectiveness research, team-based, and evidence-based care. For many reasons, this is genuinely scary for both providers and for patients. Probably the most frightening and divisive way to start this conversation is to focus on rationing or on reducing costs of end-of-life care. There are so many other issues to tackle first-hospital infection, reducing re-admissions among congestive heart failure patients, preventing medical errors and needless back surgeries.
Governor Daniels is relatively rare among prominent Republican these days in his willingness to argue within the reality-based community about policy. Although he is definitely helping by not screaming about death panels, it’s a mistake to bring cost into the end-of-life planning debate when so many other issues of patient comfort and humanity can be productively addressed before cost issues can or should be a central focus in end-of-life care.
As for the Wakefield study, it’s long past time to put the false and destructive thing to rest. Recent measles and pertussis outbreaks underscore the damage that’s been done.
There is still little reason for boasting or complacency.
The only real way to debunk crazy stuff is for the medical and public health community to treat people with the decency, competence, and respect that earns their trust. Too often, this just doesn’t happen. Every day, critically ill patients, families of children with autism, and others have real experiences that lead them to distrust and dislike the authority of scientific medicine. As long as this is the reality, there will be a strong market niche for con artists-and for oppositional figures with more legitimate wares-to flourish. Charlatans such as Wakefield are as much symbols of the medical system’s failure as they are threats to public health. So I’m not celebrating this specific long-overdue debunking as much as I otherwise would.
Game and set—maybe. The match is far from over.
From experience as the parent of a child with autism: one of the biggest causes of distrust is that all the public servants who have the job of assessing kids with developmental disorders and delays also have a vested interest in massively under-diagnosing such, lest their agencies be forced to pay for Regional Center treatment and/or special education. They also have a direct interest in neglecting to mention (or, worse, neglecting to learn about, or believe in) Applied Behavioral Analysis, the only intervention clinically proven to work against autism, since it is labor-intensive and very expensive. Parents who have been told lies about how their kids are really “fine,” and who are then-when their kids are safely beyond the age when ABA works-told that the system can guarantee nothing better for their children than relatively gentle failure in school and in life, understandably (but tragically) seek both truth and cures from less reputable sources.
Hear, hear on end-of-life care. Since hospice care must be much cheaper than often unwanted heroic high-tech efforts to prolong life at all costs, humane policy and cost-saving are aligned: and humanity not cost should be the driver. Cf. population control: if you empower women to choose the size of their families, these will in most places be smaller. Coercion is as unnecessary as it is odious.
Curiously, hospice care in the UK is still largely provided by charities. Hospices find it easy to raise money (the grumbles are from rival charities who fear the hospices are creaming off donations), so SFIK there’s litle pressure to integrate. However, when Pat came to the end of her life two years ago in England, the head medical honcho at the Brighton hospice I contacted was an NHS terminal care consultant, which amounts to a very large subsidy. An entirely proper one.