Hey! Mr. & Mrs. “Real” America, Pardon My Indelicate and Unprofessional Language, But Fuck You and Your “Death Panels” (an impolite sermon for impolite times)
Obijuan August 17th, 2009
Hey, America. It’s been a while since you and I have talked. I can tell by the glazed look in your eye that you probably think I look familiar, and it’s even more likely that you don’t care, anyway. Look, I know it’s prime time, and you don’t really want to hear anything I or anyone else has to say, but . . . well, quite frankly I’m really pissed off at you right now, and I need you to just sit there and listen up.
Who the hell amI? Has it been that long? Let me refresh your memory.
I’m a pastor. Usually, I give counsel, I listen deeply, and I sit quietly with people as they pass through those life events that make us most human. I am with people in their best and worst moments.
Many in my vocation train for these sorts of moments working as hospital chaplains, standing in the cross-currents of love and death on a daily basis until our souls have been shattered into a billion little pieces and we’re left to construct something called a “pastor” out of the shards that we’re able to recover. I’ve seen bodies mangled and brains withered. I’ve stood at the sides of grieving families as they identified the bodies of lost loved ones. I’ve been in the room with people as they’ve drawn their last, rattling breath. This is all, of course, just a long and fancy way of saying that I and my colleagues know a little something about death, or at the very least living amongst the dying.
I spent the better part of a year during my time in seminary serving as a chaplain intern at a large suburban Chicago hospital. Much of my time was spent in the chaos of the emergency room. Much of the remainder of my time was spent counseling the dying and their loved ones about advanced directives – health care proxies, powers of attorney, and so on to everything short of a “do not resuscitate” order (that’s left for the doctors). Advanced directives allow a dying patient to speak their needs, to advocate for their rights as a person long after they’ve lost the capacity. Advanced directives make the work of doctors and nurses and hospital administrators easier. Advanced directives bring a little order into a chaotic situation, and a modicum of comfort to the loved ones of the dying.
The lack of advanced directives can make an already painful situation that much more agonizing for a family. I recall one afternoon when I was paged to the ICU. An older gentleman, the patriarch of a rather large clan, had suffered a massive stroke. The MRI images at the nurses’ station showed that his brain was, to put it bluntly, soup. Liquified. Machines were all that was keeping him alive. The entire clan had gathered at the bedside to pray and to ponder. Most of the family was ready to withdraw life support. A few were not ready to let go. The patriarch had left no explicit instructions. It was down to each individual’s sense of “what he wants.” The oldest son understood he wasn’t coming back. The youngest would not give his consent. It was several emotionally agonizing hours before the family could come to consensus. Much of that agony could have been avoided had the dying’s wishes been put in writing.
I have watched families tear themselves apart, fighting for control of someone’s life when that person’s wishes are unknown. Sometimes they are well intentioned, just in pain and understandably incapable of objectivity. Sometimes there are less honorable intentions involved (Watch out, friends, when the dying have money and no living will in place. Keep your hands and feet squarely inside the car for the duration of thatride. Limbs can and will be lost.).
These are extreme examples of course (but no less real for their extremity). Lack of a directive does not necessarily lead to such major chaos and carnage. Neither does having a directive in place magically alleviate the pain of loss that comes with the death of a loved one. That pain is still big and real. However, advanced directives can prevent salt from being poured on the wounds – can prevent the geometric progression of unnecessary grief.
All of this leads me to two important points.
First, this is a touchy, emotionally laden issue – and it’s a personal one. It is between patients and their families and their doctors and their counsellors. It is a decision making process we all have a right to. Yes, even you.
Second, it affects every single one of us without exception. I am blissfully unaware of the political leanings or income levels of the people I describe above. I’d be a fool to make assumptions. The shuffle off this moral coil is a dance we all get to do eventually. The people you love will die. You will need to deal with it. You will die. We who love you will need to deal with that. It’s the greatest of all humanizing factors, folks. It hurst like nothing else. Wouldn’t it be nice if there was some way to minimize the grief?
Which brings us, sadly, to the past few weeks.
In the “debate” over health care reform (and yes, I meant to put that word in quotes – I can rant about that later, if you’d like), one of the sticking points has been over a possible provision that would allow doctors to be compensated for counseling their patients regarding “end of life” issues (“end of life” – cute – ever notice we seem to have more euphemisms for “death” than we do for “sex?”). In other words, doctors would be compensated for counseling their patients about the ways in which they might maintain some control over what remains of their lives through . . . wait for it . . . advanced directives. Remember those? Those legally binding documents we’re all entitled to, regardless of political affiliation? Those statements of intention that are sometimes sadly necessary because we, all of us, eventually die (again, regardless of political affiliation)?
And yet somehow, this notion has been transformed in the minds of some of you into the notion that, “ZOMG!! THE DEMOCRATS WANT TO KILL MY GRANDMA!!!!!” (And, friends, let’s just leave aside for now the fact that the amendment in question was proposed by Sen. Johnny Isakson, the Republican senator from Georgia). End of life counseling is not some diabolical, genocidal plot. It is an everyday occurrence, counseled by medical professionals on a regular basis across the country. And it has been misunderstood, misrepresented, flat-out lied about . . . into “death panels.”
Death panels.
Friends, do me a favor and go back and read the beginning of this again. I’ll wait.
Done? OK.
Can we agree that we’d all like the right to some legitimate counseling and an advance directive for ourselves and our loved ones? Can we then maybe agree that it might be the right thing to do to make sure that everyone has this opportunity?
And yet, for the sake of a few cheap political points, this very personal, very important issue has been reduced to “death panels.”
It is (forgive my potty mouth, here) completely fucking ridiculous, is it not? How cheap and tawdry, how inexcusably craven it is for anyone to turn something as apolitical and heartbreakingly real as death and dying into a political football!
How sad that so many of you have bought this bullshit, or worse willfully ignored the untruth of it all for the sake of getting your unrighteous “mad” on, and maybe the chance to get your face on the teevee. God forbid any of the liars or the dupes should have to face their own mortality or that of their loved ones. Would you trade in your right to maintain some semblance of control over your life for the chance to continue uttering the lie that is “death panels?” For what? For politics? A zero sum game that is, as far as this issue is concerned, a chimera? You give up your power too cheaply.
I am a pastor. I am with people when they die. I am with people when they lay their dead to rest. It is my job to soak up the truth of our mortality, to be the shoulder that is cried on, to be the bringer of tissues, to be the clear eyes on chaotic waters. Every time you utter the phrase “death panels” you cheapen what I do. You cheapen the work of doctors and nurses and hospice workers and health care professionals of all stripes.
You cheapen the experience of everyone who has ever lived through the death of a loved one.
Know that when you utter the phrase, “death panel,” you are lying. You are a liar. I’m not going to equivocate on the point so you can feel better about yourself. The phrase “death panel” is not “controversial.” It’s not something “some people say.” It is not an equally weighted “side” in the debate. It is a lie. Do some basic homework before you speak in public. You are entitled to your informed opinion, but not to your own set of personal facts. I don’t let my twelve-year-old get away with that kind of crap, I’m certainly not going to put up with it from people supposedly older and wiser. I’ll respect my “elders” when they’ve earned it.
And to all my fellow clergy, to anyone who presumes to put a “Rev.” or a “Fr.” or a “Pastor” or even a “Bishop” in front of your name: if you’ve uttered the phrase “death panels” with anything other than the tone of disdain it deserves, go defrock yourselves. We’re supposed to be the ones dealing with the reality of these issues every day. If you can counsel your grieving flock one minute and then turn and fling about the phrase “death panel” with glee the next, then you abdicate your vocation, you give the rest of us a bad name, and you should fucking well know better.
Hey, America? There’s enough of substance in the health care reform issue to really argue about. Let’s not waste any more time making shit up.
Here endeth the goddamn lesson. Now, sit your ass down.
I am entering your theology alma mater in a few weeks, and your posting is making / will make me reconsider why I’m there. In terms of person-to-person ministry, I can’t imagine a more important one than this … perhaps the hospital chaplaincy, working with end-of-life issues.
As an only child, I was blessed at the end of my parents’ lives by their clear stated wishes about what would happen. Their doctors knew, my husband and a few close cousins knew, and I knew.
My own daughter is an only child. By the time she was 21 and my husband and I were separated, I knew this would be her problem. We’ve talked; I’ve written; and I’ve discussed it with a few close friends.
Moreover, I live in Westchester County, New York. County government has prepared a little see-through bag, to be hung on the inside of your front door, with info in case an emergency medical team has to come in. It includes current drug info, doctors names, and most importantly, signed end-of-life instructions. I think it’s a very important thing, this bag the county has provided, for everyone around me.
I know Westchester County is a liberal county in a blue state, but nonetheless, this project is appreciated by every person from every background I’ve told about it. It’s been expedited by the League of Women Voters and UU congregations, among others.
The ambiguity, pain, and doubt that can hang around the deathbed of a loved one is mostly unnecessary. Programs like Westchester County’s, and proposals like the one in the health care proposal, are so obvious.
and isn’t lying considered immoral in pretty much every religion except Satanism?
Great Sermon! It is hard, if not impossible with the media going insane over the coverage of the town halls and the “death panels” to really cover what the reforms actually will accomplish. Their ratings and corporate interests are much more important then then truth.
I fear that any meaningful discussion will be lost and the proposed reforms will be watered down to effectively prevent any change.
On another note, it is interesting to see the lack of vocal support from the religious leaders in this country over health reform. Providing care for the sick and underprivileged is one of the cornerstones of Christianity and the teachings of Jesus. Yet the religious leaders have not been on the forefront of this movement. As a religious lay person it is hard to understand how the core principals of Christianity are in contract with the message or lack of message from its national representative leaders.
HR3200 creates an incentive for the Doctor to bill for EOL counseling, not the Chaplain. If HR3200 put the consult on the Chaplain I’d feel better about it.
My last EOL with a loved one was a few months ago and it was the Doc the family was prepared to throw out the window at the end-of-life counseling session. If he billed Medicare for it –as HR3200 would allow– the family would go through the roof when the got that EOB back.
Bill, let’s say your point is a given (and, do you think that doctors and hospitals aren’t already billing for this sort of counseling in some way or another?). It doesn’t change the fact that “death panels” is still a balls-out lie. You sound like you have a reasonable beef with the proposal. Shouldn’t we argue over that instead of wasting time on bad theatre? That’s my point.
BTW, the original intent of the measure was to give seniors an incentive to put end of life directives in place (so many don’t). The language proposed by Sen. Isakson would have required advanced directives to be in place in order to maintain Medicare benefits. That’s how important he thought living wills, etc., were.
As for who’s in the room doing the counseling: not all doctors make good counselors, I agree. There were only two in the ER I was at who I trusted to have in a room with me when the bad news was coming. There are many others, I’m sure, who are just as good. Overall, though, they have the medical knowledge. I sure didn’t. I had the EQ factor. Maybe Congress should consider requiring a doctor/chaplain counseling team. Or maybe folks should just feel empowered to bring their pastors in on these conversations.
My apologies to those commenters who stayed in moderation limbo all week. It’s been so long since I had visitors, I’ve apparently forgotten how to be a good host.
@Matt, re: vocal support from religious leaders
Here in NM, at least, the Conference of Churches drafted a letter signed by many leaders (myself included). It was to be read into the record on the floor of the House by Rep. Ben Lujan. I’m still waiting to hear if this has been done, yet.
If there’s any other vocal support coming from religious leaders, it may be getting lost in the white noise of the “debate.”
@Obiijan
Well, if you know of a provider billing for this consult let me know and we can both turn him into CMS’s hotline and collect the whistle blower’s fee. Hopefully a large Health Care system we can collect big bucks from.
I want my Doctor to tell me the odds and risks of Medical Interventions. How I play those risks: whether I chose to accept care, or request no more care and switch to palliative care, is a decision I make with Family and the Chaplain. I don’t think Doctors are equipped by training or temperament to advise and I would not want them getting reimbursement for it.
HR3200, the Recovery Bill already passed, all include panels with the purpose of driving Protocol based Health Care. Zeke Emanual sits on one of these panels (HIT) and he is also published in the BMJ recently with a proposed Complete Lives System that assigns lower probabilities of intervention to the young and old, and higher probabilities to those of us in middle age: the productive years from 20 to 50. HIT has a goal of implementing “efficiency standards” starting 2015 in the electronic medical records each and every provider will be using in this country pretty much. Those “efficiency standards” will be electronic alerts tipping off the provider to do this and that kind of care. Supposedly care driven by the Comparative effectiveness panel and all theoretically peer reviewed quality, but at the same time, driven by people aware of costs. No explicit death panels, but panels with vast powers over how Doctors will practice care, implemented through protocols and algorithms written into their computers. The same computers that will alert them to inefficiencies and electronically submit their bills for reimbursement.
This is all, of course, just a long and fancy way of saying that I and my colleagues know a little something about death, or at the very least living amongst the dying.
Everyone of us after some point knows a little something of death and dying. Some of us see it every day. Some of us start seeing it at younger ages than others. I’ve read something like a third of Chicago school Children qualify for a diagnosis of PTSD. I worked next to the Combat Hospital in Bhagdad and witnessed some of it. I’m not sure if qualifies anyone to be much of an expert in anything. Maybe we can some wisdom from it. I don’t believe I have gained any special insights.
I’d have lunch with the Chaplain who looked me at dismay once when I suggested he needed to give himself a break from working in that hospital. No Bill what I do is nothing faced to what those young troops are doing out in Sadr Cityface, and he doggedly go back to work amist the war. So I witnessed courage but I don’t know what I learned that would make me much of an expert from it.
It is that fear though, that some will claim themselves experts and land on these panels for Health Information Technology, and Comparative Effectiveness, and in the name of efficiencies land us with choices which are best left to free people to make for themselves.
It’s no panel’s business and the myraid panels created from the Recovery Act and potentially with HR3200 need to be extremely careful with their mandates. It’s not good public policy to create such groups men (and they mostly seem to be men on them. HIT’s Directors is 100% male at the moment http://publicaa.ansi.org/sites/apdl/hitspadmin/Membership/HITSP%20Board%20of%20Directors%202009.pdf)
I don’t think I’m an extremist for being concerned here.
Bill, no one is suggesting or proposing that the final decision on advanced directives be taken away from patients and families. That is nowhere in HR3200. The choice still lies with you. Counseling is counseling, period. What the recipient of counseling does with the advice is up to them.
Many doctors do have the chops to advise on these issues, and private insurers have been reimbursing them for just such sessions (without being accused of convening “death panels” I might add).
The only possible panel that Section 1233 of HR3200 could even remotely be accused of establishing is a panel of experts convened for the purpose of training medical professionals in end-of-life counseling. Professional development. Horrifying, I know.
The HIT panel that you’ve been ranting about all over the blogosphere as your current straw man is an advisory panel concerned with the interoperability of medical software and information technology. Information flow and sharing. That’s all. No actual clinical standards are determined by this particular group. The only way HIT could even come close to being a “death panel” is if it were to somehow endow the nation’s medical computer network with artificial sentience and it began hunting down Sarah Connor. You need a stronger example. Can you point to any other such panels?
The HIT panel that you’ve been ranting about all over the blogosphere as your current straw man is an advisory panel concerned with the interoperability of medical software and information technology.
Have you looked at the guidelines it will be implementing shortly? Do you know what HIT means by “efficiency standards” for 2015? They’re not Staw. They’re flesh and blood and write papers on Complete Lives Systems.
The only way HIT could even come close to being a “death panel” is if it were to somehow endow the nation’s medical computer network with artificial sentience..
And you think these guys aren’t exploring AI?
See if this helps explain the concern. Obama’s mentioned tonsillectomies as over used procedures because of the Surgeon’s greed. Obama plans to create a system that’s going to stop “excess” procedures, and one of the ways to do that is with protocols and algorithims. It’s going to be a seemless electronic system including guidence to the provider on what to do –AI could easily be part of that– and that also includes the billing and reimbursement. Obama believes pervasivie greed is a driver. It’s greed that’s broken the delivery system. That’s the charge given to HIT and I expect them to implement it.
It’s not the kind of power I want to vest in some appointed panesl. Especially when they are facing huge deficits and under intense pressure to save money.
That’s not reform. It’s not liberal. It’s a very bad kind of system to build.
Bill, no one is suggesting or proposing that the final decision on advanced directives be taken away from patients and families.
The Bill is authority to reimburse providers for a consult once every five years for patients over 65 (if I recall right). It’s the patients decision but the Doctor is the one to consult you about it.
That’s wrong. Look up the Institute of Medicines medical error study. IOM found a lot. The guy bearing the risks for making errors in your care, shouldn’t be getting reimbursed to tell you about making the decision to opt out. Pay the Chaplain. Pay the Lawyers. Pay every taxpayor a tax credit for having a signed advanced directive.
But don’t pay the guy charged with keeping you alive.
Here is the link to HCFA’s 1977 memo on the cost savings from EOL. http://issuu.com/repmccotter/docs/hew_memo/1?mode=a_p and a press release quoting Cardinal Bernadine’s condemnation of it. http://baarswestside.blogspot.com/2009/07/statement-by-house-gop-leaders-boehner.html
I can’t imagine what would have changed from 77 to today for CBO not to have scored HR3200’s version as a cost savings too.
Doctors can and should do the counseling, Bill. The already are, they’re already reimbursed for it. 3200 is not creating anything all that new. If you don’t trust your current physician to do that consult with you, find a physician you trust.
And you think these guys aren’t exploring AI?
C’mon, Bill. We all know Skynet was a military project.
One place left and right agree:
F you, it’s all about me.