Talk To Your Doctor

cartoon icons of a doctor and a patient talking to one another
Sarah Kliff, - July 8, 2015.

I don’t have a problem with Medicare paying doctors to have “end of life" consultations with their patients. All that talk about “death panels” a few years ago was cynical nonsense, meant to stoke peoples’ fears in order to defeat the Affordable Care Act. I don’t believe there’s a plot to hoodwink people into agreeing to euthanasia or anything like it.

That said, Sarah Kliff is onto something when she writes about peoples’ fear of losing control to professionals and bureaucracies. It’s a real fear, exaggerated, but based on real-life experiences people do sometimes have with merciless insurance companies and dismissive or condescending doctors.

Many disabled people have a related, but different concern. It may be hard for non-disabled people to believe, but I think all of us with disabilities wonder from time to time whether some day our disability-related needs will finally be too much for our coworkers and supervisors, our schools, our families and friends. Long term care is widely understood to be a family problem, a stressor that breaks marriages and causes burnout, for the caregivers. Medical technologies like ventilators and wheelchairs are still spoken of as traps and millstones, not life-savers and mobility aids. Again and again we are told, indirectly but loud and clear, that a significant number of our fellow citizens bitterly resent their tax dollars paying for any of our care and maintenance, which is assumed to be some kind of major risk to public solvency. The constituency of people who argue for legalizing suicide huge, based on the assumption that ongoing life with disabilities is intolerable and any sane person would rather be “allowed” to die. It doesn’t help when experts who one minute are all concerned about peoples’ wishes being known and respected, can’t help themselves from noting how much it costs to keep people alive “on machines."

On top of that, I think there is a legitimate concern that medical professionals tend to view life with disabilities quite negatively, in some cases worse than less informed laymen. To many doctors, disability means life with everyday care needs that will never result in a “complete recovery.” A reasonably good outcome for us may, for many doctors, seem like a professional failure.

The crux of the problem is that too many people confuse disability with this vaguely defined period known as “end of life.” They are not always the same thing.

I’m not worried about people who have lived with disabilities for a long time. We know the score, and we can speak for ourselves in no uncertain terms about what “quality of life” means to us, regardless of anyone else’s perceptions. What worries me is people new to disability, and people not disabled yet, trying to think intelligently about what they would want if and when it happens to them. What will they understand about living with disabilities if they only hear about it from a doctor?

All that can be addressed, however, so that “end of life conversations” can be valuable and empowering. Really, disabled people should push harder than anyone for these explicit, very specific conversations. If we want our lives to be valued, if we want to live no matter what the cost or how scary and icky we look to others, then should use these conversations to speak up and say so, very specifically, individually, to our own doctors.

Which reminds me to stop procrastinating and review my Health Care Proxy and Advance Directives … and to have a conversation about these things with my doctor.