the grief report, with political digression

[mrissa]

I have had opportunity to notice, in the last several months, that grief comes in different layers, sort of strata if you will, and that as dhole can tell you from a different perspective, the layers don't really settle into flat, perfectly even planes that can be lifted out neat and whole.

On one front: I find that we are much more comfortable speaking of what Grandpa would have liked, what would please him, what would honor his memory. We did so all along, but now it can be casual, conversational, unfraught. And that seems like a really good step to me, that good things that remind us of Grandpa aren't making us swallow hard every time.

And I'm feeling like I can deal with the world a bit more again after Uncle Rudy's death, so that's good. Useful like. I am nowhere near done with this. That should be obvious to anyone who has ever lost anyone. But the idea of calling the plumber, for example, does not seem like more than I can handle. I am no longer in one foot in front of the other mode for the time being, and that's good.

On the other hand, there was a photo on the front page of the Strib today where a protester was holding up a sign reading, "I will not discuss my end-of-life options with anyone." And I looked at it and had this wave of rage, and I said aloud, "You selfish, worthless piece of shit." Which is maybe not the most proportional response a person has ever had to the newspaper.

See, one of the gifts my grandpa gave us on his way out was that we knew his wishes. We knew his priorities, we knew what he wanted and under what circumstances. We had all the pain of losing him. He made sure we didn't have to add the pain of uncertainty about his wishes to that. Because he discussed all that with us. And the idea that this is a matter for aligning oneself with one political party or another is just such filthy garbage, and so likely to bring pain to people just when they can't deal with more pain.

You don't have to like the President's health care ideas; you don't have to prefer them to what we have now. Heaven knows my grandfather probably wouldn't have. But to try to convince people that discussing end-of-life care is the same thing as suicide or euthanasia is WRONG. When you discuss your end-of-life options with your loved ones and your doctors, one of the things you can tell them is, "I want you to keep me twitching for as long as possible. If you can force air in and out of my lungs, do it. By any means necessary, up until the very end. Absolutely to the limits of medical science." And then, if that's what you want, the people who love you will know. And you can talk about how important it is to you to be clear-headed vs. pain-free, if that's a tradeoff you find yourself having to make, and you can go through all of the other very personal, no-single-right-answer sort of questions.

Look. Many people want to check the box reading, "No end for me, thanks, I'll just keep going robust and healthy indefinitely," on the end-of-life checklist. It turns out that is not an option you can responsibly expect to have, and it is not an option you can responsibly expect your friends and family to have on your behalf. President Obama didn't make you mortal. You came that way. And one of the many gifts my grandfather gave us was facing that with peace and dignity and love and humor. Argue about how things should be funded and by whom and under what circumstance; that's fine. But don't try to act as though there are only hard decisions to make at the end of a person's life if one political side in one debate in one country wins out, because that is not the world we live in.

I would believe all that even if the grief wasn't fresh. I just wouldn't necessarily want to track down that one particular person from the Strib photo and take them by the shoulders and shake them until their teeth rattled. (Oh, Ms. Alcott, you have so much to answer for regarding rattling teeth.)

The other thing--now that I have brought up one of the most controversial political issues of the day, wheee--is that I am feeling extremely conflict-averse. Even invited levels of discussion that have remained totally civil are making me nervous right now. I recognize that this is irrational, and I don't want to refrain from conversation or only converse as long as everyone sings the Gilbert and Sullivan song about how I am right and you are right and all is right as right can be. But for a variety of reasons most of which are not mine to go into and most of which are not about me directly, I'm feeling pretty shaky about it right now.

Another thing is that I have decided that there are limits to my reading of my grandpa's books. Specifically, if I read several books in a series and am not finding anything to like in that series, I don't have to read all the rest. I don't have to do this at all--I didn't promise Grandpa or anyone else. But I want to, bit by bit, and some of the books are good, and others are interesting in different ways. I just need to set some limits for myself on this, and that's one of them, and I think that's okay.

Comments

[jhetley.livejournal.com]

My mother told us *exactly* what her end-of-life intents were, years before the event. I would like to have a chance to teeth-rattle whoever on the hospital staff removed the "DNR" from her file . . .

[mrissa.livejournal.com]

A family friend was recently talking to us about the suffering his mother went through because the doctor was "too busy" to review her chart all the way and resuscitated her when she had a DNR in place. I'm sorry your family had a similar situation. I understand that people want to err on the side of not just stepping back and letting sick people die, and that's the way I'd want them to err, too. But I'm glad that the family friend in question worked with the hospital to review procedures to try to reduce the error rate at all, because erring in any direction costs so much in human terms.

[roane.livejournal.com]

Thank you for saying this. It makes me want to shake people too, because that discussion is, to me, one of the most sacred conversations you can have, whoever you have it with. To try and convince people that "end of life" discussions are unnecessary, or even immoral is... I can't even imagine it.

So thank you. And I'm so sorry for all the loss you're dealing with.

[mamapduck.livejournal.com]

"Which is maybe not the most proportional response a person has ever had to the newspaper."

I once burst into tears, ripped the paper to shreds, flung the pieces on the ground and stomped on them while shouting incoherently. In the middle of Sproul Plaza.

So you're not so bad, eh? :)

[rosefox]

Yes to all this. As you know.

[mrissa.livejournal.com]

Um. Well. I am from here.

[ckd]

I'm not sure my reaction to that photo would be that much milder than yours, even right now. My mother was lucky enough that both of her parents made their wishes clear, and even then it's not like things were easy, just not harder than necessary.

Still thinking of you and wishing you solace.

[mamapduck.livejournal.com]

So I guess your response was Minnesotan for "big public meltdown." :)

In my defense it was September 14, 2001. I'd just gotten the call from Shelby's mom that she was missing in the North tower. I was in shock and someone printed a sanctimonious "it was all our fault we had it coming" op ed in the paper. Only in Berkeley does such trash get printed at a moment like that. But my self-control is usually better than that.

[mamculuna.livejournal.com]

Perfectly said.

[miz-hatbox.livejournal.com]

Yes to all of the above: Grief has layers and those layers lump up like a cheap rug. Sometimes they are exactly that easy to trip over, too.

Your grandfather sounds like he was very smart about these things. My grandmother was too.

Thinking of you and yours.

[retrobabble.livejournal.com]

I just need to set some limits for myself on this, and that's one of them, and I think that's okay.

Totally and utterly okay.

I can joke and laugh and talk about the good things, but sometimes there is unexplained moments of Emotion that one doesn't even like to acknowledge, let alone talk about.

But there are still good things. As my mother says, "We were lucky to have such a good person in our lives." We just always want more, no?

[midnightsjane.livejournal.com]

But to try to convince people that discussing end-of-life care is the same thing as suicide or euthanasia is WRONG.
Absolutely. I am an ICU nurse (in Canada) and one of the most important things any family can do is to know what their loved one wants, before they find themselves in the midst of a crisis. End of life issues are important things to discuss, because the fact is, we all will die sometime. In my ICU, those discussions happen with almost every family, so the patient, family and medical staff know what their wishes are. We respect both sides; if the consensus is to carry on, we do so; if the person wishes to be palliated, we do that. How we die often depends on how well the doctors and families understand our wishes; for me, if there is no hope of useful (to me) recovery, I want to be kept comfortable and to die with dignity. That is much different from suicide or euthenasia.

[papersky.livejournal.com]

Organ donation too. I mean "what you said, and also people should talk about their wishes for organ donation".

[nihilistic-kid.livejournal.com]

Is this why my resume keeps bouncing back from deathpaneljobs@whitehouse.gov?

[fidelioscabinet.livejournal.com]

Having been down that road with a friend, as her medical-power-of-attorney holder, having watched my mother struggle with what my father might have wanted as opposed to what she could live with herself for choosing, yeah.

Oh, yeah.

Talk that over with people. Put it in writing. Make it plain. People who are trying to sort out all the rest of it as they stand by your bedside will appreciate clear and direct instructions more than words could ever convey.

[fidelioscabinet.livejournal.com]

No, it's because Larry Summers and Timothy Geithner have it in for you. Rahm Emmanuel was willing to throw you under the bus in order to get something to hold over their heads later on.

[nihilistic-kid.livejournal.com]

All three of those dudes are on my DEATH LIST now! Just wait till I get on a panel...

[themagdalen.livejournal.com]

I have been percolating writing an essay for publication on just this subject (with or without the word "filthy") and now I am so tempted to just write "Go read Mris on this" and link to you. I don't think I can beat "Obama didn't make you mortal. You came that way."

Thank you for saying this so clearly at such a difficult time.

[cathshaffer.livejournal.com]

I can't make any sense of that protest message. That's the second one this week. Someone else linked to another that I just couldn't parse with any version of reality that I know. Is euthanasia somehow a part of the Obama health plan? Is there some specific thing the person was protesting? Or was it just a general assumption that of course the new health plan was going to involve lots of euthanasia?

Where are all of these protesters getting their crack?

[rmnilsson.livejournal.com]

I'm right there with you on this one.

[dd-b.livejournal.com]

I think they're just high on life :-).

Or perhaps deranged on their own fatigue poisons.

A lot of people go totally apeshit over the concept that somebody else would get to decide whether the cost of saving their life was worth it. It's a scary concept; the reason they're crazy rather than rationally terrified is, first, that that happens now already, hidden away in insurance companies, and happens LESS in countries with socialized medicine (the doctors get more input), and second, that in the countries with socialized medicine it isn't done about individual cases, it's done in overall reviews about various treatments, deciding what circumstances justify what efforts.

[columbina.livejournal.com]

I would add to that, that many, many people (I might even go so far as to say "most") simply are in denial. As M'ris said, their policy is "No thanks, I'll just be robust and healthy indefinitely," and if they are forced to have any sort of conversation about it, they might have to face the fact that that's unrealistic.

Or, put another way, I think a whole lot of people are doing the political equivalent of sticking their fingers in their ears and saying "LA LA LA LA I can't HEAR you ...."

[cathshaffer.livejournal.com]

It would be illegal for an insurance company currently to withhold lifesaving treatment for a particular patient on the basis of cost. Insurance companies do sometimes resist adding new "experimental" treatments because this obviously costs them more money, and it's very very common for insurance policies to come with riders excluding certain types of technically medically unnecessary procedures such as cosmetic surgery. But once a service or procedure is on the list of covered benefits, it's covered. They do sometimes capriciously deny coverage in an attempt to save money, but they have no right to do so. They have to abide by the policy as written.

I've heard some hair-raising stuff about the cost-saving measures in place in England, for example. So perhaps this protester is referencing that. If so, it's a bit too obscure and it's not immediately clear how it relates to the current legislation. He definitely needs some help from a marketing expert or something to create a more effective protest message.

[mrissa.livejournal.com]

There is a provision in the bill for discussing end-of-life care, and some political entities (such as Sarah Palin, very publicly) have decided that it would be advantageous if they could spin that as a discussion of euthanasia. Even though there is no provision in the health plan for legalizing euthanasia, so it continues to remain illegal to go killing people. I find it difficult to believe that the political talking heads don't know this, so I think they are lying to people rather than just amazingly stupid.

[dd-b.livejournal.com]

Insurance companies routinely decide what treatments they will and will not cover. These are as much financial decisions as medical decisions.

[mrissa.livejournal.com]

"On the basis of cost" is a very slippery thing. "We're not withholding a treatment we would ordinarily cover in this circumstance--we would never cover further treatment for persons in this condition," can be a decision that was made largely based on cost and yet is excluded from care in general rather than for Patient X specifically because of cost.

"Medically unnecessary" gets particularly slippery when someone is seriously ill and at a high probability of nearing death--are we really giving Patient X a chance of survival, or are we spending money on a procedure for someone who will be dead soon no matter what? It's no surprise to me that some insurance companies have found ways to work around that.

As for the hair-raising stuff about cost-saving measures in place in England, I'm sure some of it is even true. But some of the rhetoric is getting pretty ridiculous--like the editorial that suggested that Dr. Hawking would be a casualty of a socialized system like Britain's. Apparently nobody got the memo that "great scientist" and "American" are not completely synonymous....

And I'm not saying that "every possible socialized system or every possible change to our system would protect Dr. Hawking." What I am saying is that it makes a lot more sense to say, "What pitfalls are actually in the specific system proposed, and can we change it or go with a different system to avoid them?" rather than to say, "I can imagine this bad thing happening, therefore let's go with the status quo where no bad things ever happen," which seems to be a lot of protesters' approach.

[mrissa.livejournal.com]

Yes. That's very important.

Grandpa Books

[hairyape68.livejournal.com]

I happen to love Erle Stanley Gardner's mysteries. They mostly are not well-written. I could improve most of them if I was allowed to edit them. But there they are. I read them over and over, every few years I read them all. If my grandchildren tried to read them they probably would wonder about my taste and sanity.

REH

[cathshaffer.livejournal.com]

Are you disagreeing with me? I think you may have misread my comment.

[cathshaffer.livejournal.com]

Right. Lots of stuff is excluded in general, but I find that whereas most people believe lifesaving treatment is often excluded, that's generally not the case. If a treatment is effective and lifesaving, it's medically necessary. Those are the type of treatments you are least likely to have trouble getting. Often, there will be bureaucratic hoops to jump through such as preauthorizations, and those are huge headaches, but the insurance company has very little legal standing to deny you a clearly effective medical treatment unless it's specifically excluded in the policy. And not very many employers are keen to offer policies with cancer treatment exclusion riders and such. Some policies do have lifetime maximums, which are scary to me. What gets denied is often the stuff at the edges, that is maybe very effective for some people, and not so much for others, so that in clinical studies it looks worthless. Or treatments that are new and the insurance company can claim are not proven yet. I know a lot of people believe Medicaid is crappy insurance, but I've watched them pay out maybe a million bucks for my mother's care with almost nary a wimper. She has also received care at some of the top institutions in the country, and received some of the most cutting edge therapies available. Yes, we've had times where we've been doing the phone runaround, but she's had good care. It's worth noting that Medicaid/Medicare is the largest single payer in the US, and it is "government health care" and it works just fine. Any valid criticism of it is really on the doctor/hospital side, which claim reimbursement rates are too low.

But it's not true that insurance companies are making life-or-death decisions for individual patients based only on cost. Or at least not legally and legitimately. A lot of people just don't know their rights and if they are in a desperate situation, are probably not disposed to be aggressive advocates for themselves, so they don't always question a denial, or know what words to use to get around it. I have also not heard a solid example of this happening in health systems outside the US, but I'll grant that it's possible.

I was just thinking the other day that one of the hardest things about fixing our health care system is that almost no one actually knows how the system works. It's extremely opaque. And that's horribly complicated by the fact that often it's hard for a layperson to discern what is really medically necessary and what is a good standard of care and what is not. So far I approve of what's going on with the reform efforts. I think it's going the right direction.

[cathshaffer.livejournal.com]

Killing people still illegal, right.

[cathshaffer.livejournal.com]

I tracked down a bit of explanation on this. Apparently, it's been put about that the health care reform could lead to forced euthanasia of the elderly, but this is not true. There's a little article about it here:

http://iowaindependent.com/18485/grassley-repeats-euthanasia-claim

The provision is apparently to cover end-of-life counseling, which is why the poor misled soul said he was not discussing his end-of-life options. He thinks the counseling session is just an excuse to off him.

The DELIBERATE obfuscation is so frustrating. I am all for discussion and debate based on facts, but the lies are really outrageous. If they can't find a true fact about the health care reform package to object to, then what's so objectionable?

[mrissa.livejournal.com]

Well, I think two things:

1) Both major political parties have been trained that any victory for the other party is a bad, bad thing. Not everyone in either party feels this way, but when you go into something thinking, "This is going to be bad, let me find where the bad stuff is," rather than, "Is this good or bad? Let's look," that's going to come out pretty twisted in spots.

2) Some people have philosophical objections to the government getting involved in any industry they have previously regarded as private sector. But I think for the most part they have lost. Even some of my staunchest libertarian-leaning friends and relations are looking at the current health care system and saying, "This is a mess. Something has to change." And examples like, "Oh, in this system you could have to wait three months to see a specialist!" are falling completely flat with people who have had to wait six months to see a specialist now, or who haven't been able to see one at all. So you have to up the ante.

Of course not everyone does feel they have to up the ante, and people who are arguing the merits of this specific plan on one side or another are getting drowned out in the coverage of "OBAMA'S JACKBOOTED THUGS WILL SHOOT YOUR GRANNY" protesters.

[redbird]

I would just like to add that what that sign is saying is "I'd rather have this discussion in the emergency room, on a day when I wasn't planning to think about anything more important than whether to go to the ballgame or a movie."

[mrissa.livejournal.com]

I am generally fine with links to entries that are public.

[jhetley.livejournal.com]

About all I can add is that both our boys know where to find the "living will" and "medical power of attorney" stuff, and they know what happened with their Grannie . . . in invective detail.

[dd-b.livejournal.com]

It would be illegal for an insurance company currently to withhold lifesaving treatment for a particular patient on the basis of cost.

It's not, however, illegal to withhold lifesaving treatment on the basis that that treatment is not covered. And it's not illegal to decide a treatment is not covered on the basis of cost.

So, really, the distinction you're drawing seems pretty irrelevant to me.

[cathshaffer.livejournal.com]

Actually they're not really allowed to arbitrarily refuse to cover treatments on the basis of cost only. If a policy generally covers hospital and doctor charges related to childbirth, they can't capriciously decide not to cover C-sections anymore. What they would have to do is wait for the end of the contract or open enrollment period and offer a new policy with a specific rider that excluded surgical childbirth. There may be policies out there like that, but most employers (which are the ones that generally make these choices) would want to offer this benefit so are not going to sign that contract. (As a consumer, I wish I were the one making this call, not the employer.) Likewise, if cancer treatment is generally covered, they can't arbitrarily decide that they are not going to cover a particular cancer therapy on the basis of cost. They may make an argument that it is not effective, that it is too new or experimental, or that there is a generic equivalent, but they can't just refuse to cover it.

Nonetheless, you said at the beginning of this was "somebody else would get to decide whether the cost of saving their life was worth it." You've drifted away from that, now.

If you want to make a different argument now, that's fine, but clarity is always helpful.

[dd-b.livejournal.com]

I'm not familiar with any situations where an insurance company got in trouble for refusing to cover something. At worst they were forced to cover it. I've heard of many situations where they've refused to cover critical treatments. And then there's the tendency to retroactively cancel individual policies at the slightest oppotunity. All in all, it adds up to a consistent pattern of the insurance company acting in their own best interests -- which shouldn't surprise anybody!

[cathshaffer.livejournal.com]

Do you have an actual point, or are we done?

[dd-b.livejournal.com]

If you are going to continue to refuse to read my plain point, I guess we're done.

[redbird]

One of the check-off boxes on the standard form for medical proxy (at least the one my local hospital uses) is about organ donation. Which puts the subject on the table, though as I noted above, it's better to have these things discussed and filled out at a calmer moment.