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The difficulty of dying well

As Atul Gawande writes in a difficult but important article, our system is not set up for it:

In 2008, the national Coping with Cancer project published a study showing that terminally ill cancer patients who were put on a mechanical ventilator, given electrical defibrillation or chest compressions, or admitted, near death, to intensive care had a substantially worse quality of life in their last week than those who received no such interventions. And, six months after their death, their caregivers were three times as likely to suffer major depression. Spending one’s final days in an I.C.U. because of terminal illness is for most people a kind of failure. You lie on a ventilator, your every organ shutting down, your mind teetering on delirium and permanently beyond realizing that you will never leave this borrowed, fluorescent place. The end comes with no chance for you to have said goodbye or “It’s O.K.” or “I’m sorry” or “I love you.”

People have concerns besides simply prolonging their lives. Surveys of patients with terminal illness find that their top priorities include, in addition to avoiding suffering, being with family, having the touch of others, being mentally aware, and not becoming a burden to others. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars. The hard question we face, then, is not how we can afford this system’s expense. It is how we can build a health-care system that will actually help dying patients achieve what’s most important to them at the end of their lives.

I want to talk about death panels here, and the difficulty we had in even assuring that doctors are paid for having a conversation with patients about end-of-life options, but I don't want to recast this as a political argument. The problem is, as with many things in medicine, a question that is terrifying intimate also has enormous public policy implications, as the last year of life is incredibly expensive, and it's paid for by Medicare, which means it's paid for by taxpayers. This is a difficult enough conversation to have without tossing politics and economics into the mix, but they're present whether we want them there or not. And so we've responded by ignoring the question, shouting it down when it comes up, and paying whatever's necessary to avoid a discussion we don't know how to have. That's not just a bad solution for taxpayers, of course. As Gawande says, it's a bad solution for patients, their families and their doctors.

Update: I think it'd be useful to offer people a refresher on what the 'death panels' actually were.

By Ezra Klein  |  July 28, 2010; 9:04 AM ET
 
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Comments

"The problem is, as with many things in medicine, a question that is terrifying intimate also has enormous public policy implications, as the last year of life is incredibly expensive, and it's paid for by Medicare, which means it's paid for by taxpayers."

And yet you're willing to have taxpayers pay for abortions of convenience. Yeah, that'd be just great, eh?

By the way, I saw that Weigel joined SLATE. A much better fit for him, don't you think? He can be just as biased as he wants and won't have to hide it and lie to the public.

Posted by: WrongfulDeath | July 28, 2010 9:15 AM | Report abuse

There is a massive difference between signing a DNR order and having a bunch of bureaucrats decide how long you can get chemo for, or if you should be put in a hospital for that 1 in 100,000 chance that you sometimes get better. Its one thing with terminal cancer that is somewhat predictable.
What about instant, life changing medical emergencies like strokes and heart attacks? I had family members who were not supposed to get out of the hospital, make it out and live for years after a massive stroke. And while they needed assistance, they also were able to talk, conversant and enjoy the company of others.

I am afraid that with all due respect your not looking to have about end of life, but about other people telling a family that the choice is being made for them. thats a death panel and that IS a political subject, like it or not. The rationing of life is not something a board of businessmen and public policy writers should be deciding. The hippocratic oath says doctors should always try to save lives, not be the ones who chose when it ends. Its an individual choice, if you don't like it move to the UK where the death panels will be more than willing to pull the plug on you.

Posted by: Natstural | July 28, 2010 9:38 AM | Report abuse

The problem is the default position is to do everything possible to prolong life no matter what the expense and no matter what the patient's quality of life is like. The opposite should be the case--unless there is opposition from the patient and the family, the default should be to make someone as comfortable as possible without regard to extending life to the greatest extent. That's what my mother chose and she died of cancer with great dignity on her own terms, and we were laughing and talking just a few days before the end. The hard part is to find doctors and a hospital that will actually listen and cooperate with the patient and family.

Posted by: AuthorEditor | July 28, 2010 9:45 AM | Report abuse

Ezra says he does not want to recast this a political argument..

Yea, right.

The founder of journolist does not want to talk about politics.

Why would anybody believe anything written by this man?

Posted by: TECWRITE | July 28, 2010 9:49 AM | Report abuse

"I want to talk about death panels here."

And so it begins! Are you kidding me? This is all we need, a group of elitists who didn't think the "uneducated" masses were smart enough to form their own opinions on Presidential candidates from unbiased, objective journalism that they had to be fed PR pieces masquerading as journalism now making life-and-death decisions based on economics.

It's all economics, eh? Do you know how much it costs to investigate a crime, arrest and incarcerate one criminal and put him through the system? Why bother, it's all cost-benefit analysis, right? Let him go, let the victims deal with it, who cares, it's all very simple policy (with no real analysis long-term or anaylsis of implications). So people eventually ignore law enforcement and resort to mob violence? Cheaper, right? Faster, right? So forget peoples' rights and the Constitution. It's all about the wise ones informing us what's best for us.

This is beyond sickening. From elections to the environment to national security and life-and-death, is there nothing these folks aren't better at than us in the real world outside the blogosphere, campaigns, and pressroom. . . basically, We, the People?

Posted by: jcannes76 | July 28, 2010 9:49 AM | Report abuse

And so it goes when you socialize decisions like this. Much like pitched battles over school curriculum, this is a predictable outcome of a collectivist institution.

Posted by: theo2709 | July 28, 2010 9:53 AM | Report abuse

The difficulty of dying well could be akin to the difficulty of telling the truth well.
Did you actually talk to people who are dying to write this, or is this story more inline with your past escapades? Where exactly can these surveys be found in which you base your views, or did you make them up?
If not, then include references so the readers may verify that what you are quoting is actually fact.

Posted by: shutoz | July 28, 2010 9:53 AM | Report abuse

Mr. Klein, on the one hand, you are correct that the taxpayer dollar is ever present in the policy-level discussions about end-of-life decision-making.

On the other, life, liberty, and the pursuit of happiness is at the heart of our nation's essence and that includes choosing how we face death. That makes it a personal choice, and the intrusion of any institution is bound to be viewed with suspicion. You can't get around that, either. Policy discussions, like your post, are broad brush strokes and don't fit each individual's needs or desires.

Talking only about death panels limits the discussion, for it assumes that doctors are the primary source of information and guidance regarding how we choose face death. It also focuses primarily on those whose medical care is partially or wholly government subsidized rather than on everyone.

By all means, talk policy if you are called to do that. I'm not sure how many will listen unless you broaden the discussion.

Posted by: MsJS | July 28, 2010 9:56 AM | Report abuse

Ezra,

Thanks for writing about this engrossing essay by Dr. Gawande. It is a powerful discussion of what many of us figure out too late - that it is better for both patients and their families to use hospice care that is designed to ease suffering in the final months of life, rather than continuing a losing battle with increasingly invasive and painful procedures. Such an approach not only saves money, but the patients often actually live longer, and the families are significantly less depressed after their relative's death because they have spent the final months having quality time with their relative, rather than watching a slow and painful death.

Certainly, end-of-life care decisions are extremely difficult to make, especially when you are in the midst of a medical crisis. They require people to seriously evaluate their values and those of their families. That is why it is critical to talk about these issues with loved ones well in advance, so everyone knows your wishes regarding end-of-life care and your loved ones do not have to make extremely difficult decisions for you. Writing your decisions into an advanced directive is absolutely critical.

As Dr. Gawande explains, this issue is also a fiscal one, as we waste vast amounts of taxpayer and private resources for procedures that virtually no chance of prolonging life in any meaningful manner, that often simply increase the pain and suffering that your loved one experiences, and that many would not choose if they had evaluated their beliefs, values, and desires beforehand (though some would still choose taking extraordinary measures).

I applaud President Obama and liberal Democrats for trying, in their health care reform legislation, to create incentives to ensure that individuals start these discussions with their families and doctors well in advance. I am disgusted however that the Republicans, their media lackeys, and a few spineless Blue Dog Democrats childishly destroyed this effort with ridiculous claims about "death panels." As a result, many people and their families are going to continue to needlessly suffer from a system that fails to encourage serious discussion of what individuals really want at the end of their lives.

Posted by: ShannoF | July 28, 2010 9:57 AM | Report abuse

Dr. Gawande writes a powerful article in The New Yorker on the issue of dying that we all need to consider.

It's a bit long, but not "difficult" to read as Mr. Klein warns. Click here:

http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande?currentPage=all

Klein is right, though, hospice as an alternative to ineffective treatments needs to be discussed and understood.

Too bad the abominable ObamaCare legislation obfuscated this opportunity to "go gentle into our good night" when the time comes. As it will for all of us.

Posted by: dtking | July 28, 2010 10:00 AM | Report abuse

Dr. Gawande writes a powerful article in The New Yorker on the issue of dying that we all need to consider.

It's a bit long, but not "difficult" to read as Mr. Klein warns. Click here:

http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande?currentPage=all

Klein is right, though, hospice as an alternative to ineffective treatments needs to be discussed and understood.

Too bad the abominable ObamaCare legislation obfuscated this opportunity to "go gentle into our good night" when the time comes. As it will for all of us.

Posted by: dtking | July 28, 2010 10:01 AM | Report abuse

"and it's paid for by Medicare, which means it's paid for by taxpayers."

This guarantees that it will be a political argument.

Posted by: jnc4p | July 28, 2010 10:05 AM | Report abuse

"That's not just a bad solution for taxpayers, of course." -- Scary stuff, particularly when the "taxpayer" factor is included.

Consider the Oregon Plan, which denied public funding for treatment of anencephalic babies: the babies cannot see, hear, or feel anything and are certain to die, so treatment is truly a waste of taxpayer funds which does nothing other than appease the parent(s). Oregon is correct to deny the public funding... but would it be correct to preclude paying customers from obtaining the services denied to non-payers? For that matter, is Oregon justified in denying Mercedes Convertibles to street bums?

Ultimately, the only just solution is limited taxpayer (and by implication, government) involvement: those who have worked and earned and saved can use their money in the manner they see fit. To say that allowing workers to spend results in cruelty is equivalent to saying that requiring only some individuals to work and earn and save is cruel.

Georgetown University has an excellent introductory bioethics curriculum online, with a sample at http://highschoolbioethics.georgetown.edu/units/unit1_3.html

Posted by: rmgregory | July 28, 2010 10:08 AM | Report abuse

We lost our 19 year old foster daughter to cancer. She died about six months after she was diagnosed. For most of the time she was undergoing treatment, we had some hope for a cure - even very aggressive cancers seem to ebb and flow. Her tumors shrank when treatments began, and there were a couple of scans that seemed to show progress. But, after trying two different treatment regimens, our doctors told us that the drugs weren't working.

We called the hospice immediately after we got home. That same day they came to our house and explained what they could do. We filled out the paperwork, and by that evening we had a hospital bed and oxygen set up in our living room. Nurses came at regular intervals, and were also on 24 hour call for emergencies. They took over pain management.

A relatively short time later, our daughter took a turn for the worse, primarily tachycardia, which she had also suffered during chemo. While the doctors had said that she might be able to live anywhere from 3 months to 1 year with the cancer, it was pretty clear that she was going downhill much faster than that. Now we were in a quandary - was she declining because of the cancer, or because of an opportunistic disease that could be cured?

We contacted the hospice nurses and our physician. The hospice nurses essentially said that this is what dying looks like. Our physician told us what we knew before we called - we'd have to bring her to the ER for a diagnosis. We knew there was a good chance that she'd die in the hospital if we brought her there. She'd been hospitalized twice during her treatments, and, while the hospitalization extended her life and enabled us to continue the cancer treatments when we thought they might work, the "cure" was almost as bad as the disease. Our daughter did not want to go back.

We decided to stay home and focus on keeping her comfortable. All of our friends and family, and our priest and friends from church, were able to see her, and she them, while she was still able to appreciate it. Then she slipped into a coma. At 5:00 PM the next day, our nurse told us that her breathing had changed, and she was dying. My wife and I held her in our arms, my wife sang a hymn, and our daughter passed away.

I wish that she had not gotten cancer - to see a life with such potential slip away is heartrending. But, if she had to die - and, we all have to die, though most of us are lucky enough not to die so young - she was fortunate to go with dignity, surrounded by people she loved so much, and who loved her so much. I no longer wish for a long life, just one that honors hers as long as it lasts. If I manage to do that - if I display a fraction of the love, courage, warmth and decency that she did - maybe I too will leave this world in my own home, surrounded by people who love me, smiling and laughing in my last hours of consciousness. I hope so.

Posted by: geoffcgraham | July 28, 2010 10:48 AM | Report abuse

It's sad when you have a blog post discussing an extensive, serious article like Ganawande's that raises serious questions which aren't partisan or political in nature, and then most of the comments are from people who clearly didn't even read the article or know what it's about.

They just resort to tired, loaded, cynical arguments. It's pretty sad actually. How will we ever solve serious problems in this country? We've got calculus in front of us and we're arguing about addition and subtraction.

Posted by: vvf2 | July 28, 2010 10:54 AM | Report abuse

The last paragraph is one of the best I have read from you. And I followed you from TAP.

Thanks.

Posted by: grat_is | July 28, 2010 11:03 AM | Report abuse

Dr. Gawande's article is important and thoughtful. Physicians spend their professional careers trying to "save" people and extend life. However, one cannot stop "time" and science is imperfect.

When it became obvious to my family that my beloved Mom's systems were shutting down, we brought her home to die in her own home. Mom said, "Am I dying?" When we said, "Yes", she said, "That's o.k., just get me out of this dungeon." With the help of hospice and our family, Mom had three good days to say goodbye to all of her friends and family. It was the hardest thing I have ever done, but it was the last gift I could give to Mom.

As a cancer survivor, I can say that chemo was no picnic. I am well now, but my family is well aware of my wishes for the end of my life when that time comes. All families need to talk with each other and have an understanding of quality vs quantity of life.

If I have a choice, I choose to go like my Mom, with grace and dignity, in my own home, surrounded by the people I love.

Sometimes truth trumps hope.

Posted by: sandra14 | July 28, 2010 11:04 AM | Report abuse


some friends who are cardiologists said that article should be mandatory reading for all patients and doctors. They agree it is easier to just 'do the next thing' rather than have the difficult conversation.

The La Crosse system is great and to the citizens of La Crosse, it's clear this isn't a political process, it's a helpful, human process. I wonder if the Medicare innovation center will have the authority to do some similar pilots?

Posted by: ThomasEN | July 28, 2010 11:25 AM | Report abuse

@rmgregory : A sliver of sanity in end of life issues, its gratifying to see you venture into the reality based community.

Posted by: srw3 | July 28, 2010 11:36 AM | Report abuse

geoffcgraham,

Words fail. Thank you for sharing your thoughts.

Posted by: strawman | July 28, 2010 11:59 AM | Report abuse

"The hippocratic oath says doctors should always try to save lives, not be the ones who chose when it ends."

Umm, what are you reading that says that? The original greek version of the oath says "I will prescribe regimens for the good of my patients according to my ability and my judgment and never do harm to anyone" (It also says that the physician will not poison anyone).

As Kathy Butler illustrated in an article in the NYTimes last month, most doctors tend to focus on "saving life" and ignore without regard to their oath to "do no harm".

What Broke My Father’s Heart - http://www.nytimes.com/2010/06/20/magazine/20pacemaker-t.html?ref=magazine

Families are not systemmatically denied the opportunity to make informed decisions and their wishes subordinated to the wishes of the medical team to score some sort of success.

Posted by: Athena_news | July 28, 2010 12:10 PM | Report abuse

I am still blown away that Ezra Klein of all people can actually say we should discuss death panels, and then have the audacity to say that he isn't trying to politicize it.
This post could have been much more thoughtful if he wanted to discuss hospice care, but he is trying to frame it that hospice is forced on people by the government because their lives are no longer economically worth saving. Thats sickening.

Posted by: Natstural | July 28, 2010 1:02 PM | Report abuse

Death panels are a good idea. We cant afford to keep all the 95 year olds alive at a cost of 200k for 6 months when its inevitable they are going to die anyways.

If you dont like it, then you can pay out of pocket for whatever treatments you want. But when it comes to taxpayer dollars, there SHOULD be death panels to decide when "enough is enough."

Posted by: platon201 | July 28, 2010 3:57 PM | Report abuse

You guys need to put yourself in the doctor's shoes for a moment when you consider these "end of life" discussions.

The days of one doctor following a patient for years are over. People switch insurance networks, move, change their PCPs all the time. 50 years ago, end of life discussions were much easier because your PCP knew you and treated you over the last 30 years and he knew you and your family well.

Thats no longer the case. Now, these end of life discussions are happening in an ICU where the doctor treating you doesnt know you from jack. Put yourself in that doctor's shoes. Are you really going to tell this patient who you've met for the first time, that they are going to die and its inevitable and no further treatments will help? Its not that easy when you stop talking in theoreticals and come down to it, is it? First off, most patients will reject that advice coming from a doctor that they dont know. Family members will chime in and say "who are you to say this, you dont even know her."

Furthermore, actually telling someone they are going to die, especially after only meeting them 30 minutes beforehand, is much much more difficult than you people imagine. I seriously doubt any of you have the balls to pull it off. And even if you did, the odds are good the patient/family will reject your advice because after all you just met them 30 minutes ago.

Paying for "end of life" discussions in a PCP's office is a good step forward, but ultimately its not going to make that much of a difference. To discuss these issues, you need more than a medical degree. You need a personal connection with these patients and their family members. You need an established history with these patients. And with primary care provided by various "practitioners" who dont know you very well, thats not going to happen.

Posted by: platon201 | July 28, 2010 4:09 PM | Report abuse

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