A couple of years ago, I tried to make an informed decision about whether to give consent for organ donation. There was information available, certainly. It came in the form of pamphlets telling me about the benefits to those who received transplants, and the steps taken to maximize transplant success.
What they didn't tell me was the cost.
Why should I care? We have Medicare, and even if we didn't, obviously my estate wouldn't be picking up the tab for my generous act.
I care because a cost to the health system is a cost to my neighbours, my community, and my world.
Yes, but it saves a life!
Sorry, that's not a good enough argument. Fixing a highway embankment saves lives too, and if it does so at a lower cost, then it should have priority over the transplant program.
Well, okay, but that's easy to say if you're not the one on the waiting list for the transplant.
True, and I don't know how I would act in that situation. But I kept looking for information on costs and benefits of transplants, and as I looked, my thinking evolved. The more I looked (without success), the more convinced I became that I wanted healthcare cost information so that I could make advance decisions and directives, not for the fate of my organs after my death, but for the responsible treatment of my body while I live.
For example, I couldn't find any straightforward information on the full cost of having a kidney transplant, versus managing the disease in other ways, or accepting an earlier death. I did find out that transplant patients would face ongoing health costs associated with immune suppression to prevent rejection of the transplanted organ.
Now in case you're thinking I'm being incredibly callous, remember, I was thinking about what I would want to have happen if I myself should develop kidney disease.
I told Garth about these thoughts, and the idea of refusing a kidney transplant because the long-term cost of such medical intervention seemed irresponsibly high.
He told me I was being selfish.
I mentioned the discussion to a friend, and he agreed with Garth.
I don't.
Here is an analogy. Suppose I was adrift in a lifeboat with two plump people. I myself am on the scrawny side. We have a water purifier, but a limited supply of food. Our best estimate is that there is not enough food for all three of us to last until we reach land. My suspicion is that the two of them could survive together, but there is only enough food for one of me.
Now let's say that all three of us have spouses and children waiting back home.
If I don't drown those other two people to make sure I get home to my family, am I being selfish?
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If you do, you get to explain that to your husband and kids when you get home.
I don't think the analogy quite works. It's more a case of suicide than homicide. It's like living in the middle of a field and never planting anything, and being surprised when the winter comes.
I've been thinking about it a bit longer now, and dwelling more on the "allowing ourselves to die" aspect. This is pretty close to the bone for me, and for a family I know. I don't want to die, and I don't want their child to die, and yet there's no good-enough answer to the fact that there simply aren't enough resources to sustain all these precarious lives. This is where we most feel the lack of a spirituality that incorporates death as part of life.
The child I'm thinking of was born without a lower jaw, had no opening to his trachea, no ears, no cheekbones. They "saved" him, but he's deaf, and horribly disfigured and has already had more surgeries than I can count and looks forward to many more in his life. He'll never breath without a valve in his throat. His intelligence is normal, and he doesn't miss any of the stares and pointed fingers.
It's pretty heartbreaking from both directions.
I had cancer treatments as a young woman. I didn't realize though that the underlying cause of my cancer was the celiac and allergies, which I went on to pass to my children. I nearly died with both pregnancies. At this point, I'm pretty fierce about staying alive until they're grown, but sometimes I look very sadly on what I've handed to them and wonder if it would have been better....
From here on in, I deal with what is, and I try to keep us as healthy as possible with as little outside intervention as possible.
Thanks mum. In light of your very real stories, my philosophical boating excursion itself looks self-indulgent somehow. I hope I haven't stirred up needless pain.
"This is where we most feel the lack of a spirituality that incorporates death as part of life." I've watched an elderly relative sinking deeper into denial of his own aging. I've heard people talk about their own elderly relatives needing one small intervention, and then another, and then another until there they were, utterly dependent on life support, with loved ones facing the decision of when to remove it. If they could have known at the start how the situation would develop, they would have chosen to forgo the interventions. In a vague not-having-been-there sort of way, I think I should try to face some of this intellectually or, as you suggest, spiritually, before I have to face it physically.
The analogy doesn't work because it starts with the lifeboat scenario fully formed, and no context of how we got there. But some health crises are essentially that; an accident, or a hidden genetic problem, coming suddenly like an early blizzard. It doesn't matter what you planted. Or, to take my analogy, it doesn't matter how you got in the boat.
Let's suppose I stayed on in the boat, but refused the food. Would that be suicide? I would still be allowing the chance of an unexpected rescue. I would be increasing the chances that two families got their loved one back, instead of one or none.
I suspect that it is all a matter of degree. Just by having a tax-funded healthcare system, we are collectively giving up some individual control over our private destinies for the sake of greater security for all. The difficulty I have is that the monolithic healthcare system, (theoretically) giving no-one better or faster care than any other, also gives no-one the option for an informed choice to take less and leave more for future generations or the natural world.
Maybe I'm being too philosophical. Maybe if I was really sitting in a doctor's office reviewing my prospects and options, I would be given the information I needed. I don't know.
I am not an organ donor because of, oh, who was that baseball "great" who drank his liver into oblivion, and also because of David Crosby, and because those famous people got organs when I know other people who didn't, and because, like you, and especially at this point in my life, I think I would refuse a transplant. Living is just not everything.
No, no needless pain. Just everyday necessary angst, and funny too, because I've been thinking about this very subject quite a lot the past few days. Laura, you must be picking up my vibes! wooo....
When the Terri Shiavo thing was all over the news, I told Chive that if I was ever in a similar situation, he should give me a few months to see if I'd recover myself, and if I don't, just let me go. The older I am, and the closer my kids are to independence, the fewer those months should be. If the kids were up and gone, maybe it wouldn't be counted in months, but in weeks or days. There are too many people and too few resources to play the what-if game.
I think the protocol for heroic treatment is driven by the litigious nature of our society right now. If anything CAN be done, it MUST be done, or by jingo, I'll sue the hospital for everything it's got! Anything to buy those few extra breaths and stave off the inevitable.
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