Health care rationing is a complicated and difficult subject. I don't know where the borderlines between rationing and managed care lie. I'm not about to jump into this, either. But I do want to talk about the implications of rationed care.
I watched a relative pass through the final stages of her life, earlier this year. Dying itself is awful. Dehydration and starvation are difficult experiences to watch; I can't imagine how they felt to live. I felt awful for all of that time; I am still processing. As part of that journey, I became a very interested observer of the healthcare conventions for an actively dying person. (OK. I was more than an observer.)
The reason I mentioned dehydration et al. was not to re-open the debate about physician assisted suicide (though I kind of think we *should* talk about physician assisted dying -- that being a separate thing in my book), but to talk about dying as a process. You see, more often than not, you have to die of something. Only rarely, can a person close her eyes and say, "I'm going to die now," and then bring about her death by will. As often as not, even when you are in the terminal stages of something like cancer, you will die of something -- an infection, a heart attack, a stroke, a clot. You may just slip into unconsciousness and stop breathing, too. My interest is not the actual mechanism of dying so much as the way in which health care interacts with the dying person.
How much to spend? How much suffering to prevent proactively rather than relieve once a problem has occurred? If you are expected to die any minute now, how much care should you receive? Who decides? And on what basis? If you buy shortterm items rather than longer term (and better items) designed for the same use is the person's experience affected? Does that matter?
((HUG)). I had a very similar experience with my Grandfather. He'd suffered from emphysema for many years and In October 2007 he suffered a collapsed lung as a complication of the disease. He was an otherwise extremely fit man and didn't even shrink as some people do with age - he was 6'6" until they day he died.
ReplyDeleteThe hospital who treated him were fantastic, but there came a point when the last operation to repair the damaged lung failed and whilst he was assured that he could be made extremely comfortable indefinitely, he made a calm and rational choice to end his life. Because of our (IMHO insane) laws on assisted dying, he was 'wound down' by the gradual withdrawal of life support in tandem with an increase in pain killers.
My Uncle came over from Australia and he spent it has to be said a happy month with most of his family around him. my Dad was with him when he died, and says it was very peaceful.
My grandfather was a very dignified man and I don't think he should have had to suffer the indignity of being 'reduced' in that way when in another country he could have passed away with dignity.
I also think it's no accident that countries that find the subject of death so problematic to discuss are those (mainly western) societies that have been disconnected from the spiritual elements of each phase of life. Death can be horrible, but with a holistic, spiritual (not necessarily religious) approach it can be beautiful. From capital punishment to the grave warnings of hellfire or heaven depending on how you behave while alive all serve to place death in the negative, rather that the transformative and possibly positive sense.
One thing I am certain of though is that the wishes of the person who wants to die, or indeed may want do live despite their situation should always be honored. That's why I support 'Living Wills' 100%
Oh for FUCK SAKES, I know people have read this and are just too damn scared to talk about it. Fine. I will (it pains me though that as one of the VERY few to even bring up the subject, you can suddenly hear the silence of a pin drop on the internet - now if we go back to talking about gender identity or being butch or stuff like that, then the talking happens, but about dying, which surely NEVER happens to us all, no, no, let's not talk about that!).
ReplyDeleteFirst off, if you HAVE a disability, you have a statistically 'shortened life span' - how shortened statistically you should check out for yourself, since if people were not aware that one disability tends to show up with friends like infections and complications, then welcome to the learning comment thread.
So, you are going to die, I am going to die. IF you know someone ELSE going to die - You can get paid time off, you can get couselling, you can get support groups, you can get long term support groups, you can get books on how to deal with the emotions you feel. For yourself......er...not so much.
So, if I am suicidal, the government will willing pay for counselling, housing, special care (if I am suicidal through a manifestation like anorexia, then a special live in unit with out patient facilities later). Indeed, the amount to PRESERVE my life, no matter how close to death I am, is almost limitless. However, if you are found, during this period to save your life, that you have, say, stage 4 cancer, then the chances you will be housed and have counselling about your suicidal aspects (except to sort of hint that might be for the best) will be withdrawn. Because you aren't suicidal anymore, you are dying (or to quote a wonderful Harvard professor; American Religion (and its application in society) is based on the idea that God cannot have two thoughts at the same time. So who are we to disagree).
To spend less, to provide less care than an emergent case which can be saved, is the most open social examples that we do not all people are created equal; we believe that all good godly people who follow health and wealth are created equal (while those God must be a bit pissed at by killing them, because it is always THEM, not US, are not equal).
End of part I
Part II - As for myself, while I did extensive dental care while my 'terminal' was only in the 'possible' stages, I said, don't spend too much, just enough for five years. Is there a point in buying someone who has a month to live something with a 'lifetime guarentee?' besides cruelty? No. Is there a point to creating the points of joy which are possible in almost any circumstances (to treat people with equal respect as you would give to the president or an ex-president; to provide flowers, to provide companionship, to, for example have something like a DS which can pass the time AND be a form of distractive pain control. To watch films that are favorites or always want to be seen.)
ReplyDeleteThe way we treat people who are dying now shows that we are, generally, as society, and as a medical system not really nice people if we are to be judged as how we treat a) the most vulnerable and b) do we treat all equally? But that doesn't need to stay that way. To give, to be around the dying, does not, and will not diminish us as human beings, rather the opposite. We have a chance to be better than we are, in this simple act, to no, not always 'treat to death' as the joke is on some doctors who will pump painful chemicals and procedures into their dying patients because they 'never give up' - that we are born, and so we die. Both could be joyous events to remember by those who were there. Why one is and one is not, is a choice.
Since we currently spend about 1/50th on the dying now in terms of medical costs, and much less in terms of maintainance, I would be interested to see what parity would bring. Should someone with six months to live get a brand new Ti-lite chair? Damn skippy yes! Because it is a kick ass chair (okay maybe a power chair would be more practical) and would be more useful. And then THEY have the gift of who to give to give it to as well.
AHEFT shows African American health care has long been rationed by breeding us to limit our lives, so why should we pay for all those boomer pensions we will never benefit from? After all, it was the boomer pensions which caused the market to crash.
ReplyDeleteAgreed, Beth. Agreed. But I don't know how to take it further. I watch your efforts on your blog and I wonder how we can learn from you to make these experiences "real" to policy makers.
ReplyDeleteWith love as always.
WCD
I love it! Euthanize the boomers who deserted Iraq and Vietnam and whose pensions caused the crash. Divine Irony!
ReplyDelete