Recommended reading: “On death panels”

There’s a really impressive essay “On death panels” (a term being tossed around in the current American debate on healthcare) that was recently posted at the blog ShapelyProse. (Yes, I know the author – who has commented here – but it’s not just my bias; it really is a thought-provoking piece!)

Part of my reaction to this post was deep sadness with a tinge of fear: when it’s time for me to assume responsibility for Lily’s medical care, how will I know that I’m doing the right thing? She is incapable of, say, understanding what a DNR order is, or what end-of-life care means. That’s just keeping to the topic of the linked post; there are so many facets of everyday life that I am forced to conclude are impossible for Lily to articulate. She just saw her doctor yesterday, who thinks the bacterial infection that started a couple of days after her dental work is really a bad sinus infection. Apparently, the doctor asked her if her head hurt – how frustrating that that question is a major diagnostic tool in this case, particularly for a young woman who may not fully understand the question! That said, my mom had seen her pressing her hand to her forehead the way someone with sinus pressure might do, so there was additional information to usee in this case.

It’s hard enough dealing with the health insurance and medical care system as they exist right now in the US. Doctors are suspicious of my parents (and will be of me) because we know so much about Lily’s medical conditions – more than many of them do. (This is relatively common among families where one person has a medical condition, I think – we try to learn as much as possible so we’re capable of helping our loved ones!) The system is based on profit, so caring for a human being who was born with major medical needs kind of ruins their business model. My parents have fought long and hard to make sure Lily gets the services that she’s legally owed. But there aren’t many good options to support the entire family. (For years, my parents didn’t use the respite care that the government was willing to pay for, because so many of the providers were really bad matches for Lily.)

I would love to see a system that helps all patients – pre-existing conditions or no – access safe, reasonably priced, medically reasonable care, including mental as well as physical, including dental. I really hope that the politicians who are in a position to help us achieve that vision see the basic humanity of it, and can leave the politics part of it behind.

But I’m not holding my breath.

Updated, Monday, August 17, 2009, 8am
I woke up this morning to find an intriguingly-titled op-ed in The New York Times website: Health Care’s Generation Gap, by Richard Dooling. (opens to new window) The title and illustration at the top made me wonder if someone were going to reintroduce the idea that a lot of us don’t just deal with elder care (parents and grandparents), but care for our children and siblings, too – simultaneously. What I read instead started strong – stating that not all medical procedures can even help patients, which seemed to me to be prime evidence that SweetMachine is not alone in not finding support for her mother’s care. But it ended with the horrific implication that just because one has reached an advanced age, one is not entitled to health care to ensure continued quality of life. Mr. Dooling seems to be saying that older adults can vote, so they vote for governmental assistance for their age group, leaving children to depend on their parents for a political voice – which isn’t unfair – but the message behind his words is that this type of action has resulted in the highly inflated spending that is one symptom of our struggling health care system.

I have mixed feelings about the abundance of advertisements on television for erectile dysfunction treatments. I dislike that Lily’s seizures remain poorly controlled after trying most of the anticonvulsants in existence, vaccine development suffers in part because it’s not profitable, and almost no truly new antibiotics have been developed for decades. But I realize that quality of life is important for everyone to have – and surely, for humans, sexual health is an important part of that.

I don’t begrudge seniors acting in their own interest, Mr. Dooling, as I expect to do the same someday. We all age and die – we all deserve to live fully and with dignity as we do so, and it behooves us “younger” folks to support our elders. You may not see the value in a life of 80 or 90 years being extended or made more comfortable, but as a scientist, I hope we can learn as much as we can from those who have seen the world change – the lives of the elderly are a rich first-hand source of knowledge, and our fear of death and dying is likely the only reason we don’t take advantage of that in this society.

Also, how can you claim that rationing is “imminent,” when so many of us already feel the pain of waiting for care because demand outstrips supply? And that supply is spread amongst those who can pay before those who can’t?

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