Dr. Ken, a member on this forum has written an excellent article. Quite telling about the state of medical care.

No code for me, too!

Here's the article:

                  How Doctors Die
    It's Not Like the Rest of Us, But It Should Be
                                by Ken Murray
 

Thanks, Steve. And thank you Ken! Well written, insightful and meaningful to me.

Ken that was such an honest and candid article. I really appreciated it.There are not many doctors that would spell out the end of life issues like you did.
I for one, by occupation, tend away from the over utilization of drugs and surgery, Certainly there are cases where it is indicated.

It is paradoxical though when my own father became ill with congestive heart failure,pneumonia and kidney failre at age 86.He also had a large abdominal aneurism that was deemed too high risk to repair.My father was admitted into an ER and placed in a CCU. The care was amazing. Too amazing. Through dialysis and meds they got the fluid out of his lungs, got his heart and kidneys functioning. They were ready to release him when his abdominal aneurysm burst while in CCU. He underwent a 6 hour proceedure to fix the aneurism.4 more weeks of CCU and a regiment of dialysis 3 times a week for the rest of his life.
Ken my dad would never had wanted to be " saved" to live the next two years in a steady pathway of deteriorating health to the loss of self reliance and ultimately loss of dignity in a nursing home.The doctors saved my dad with their amazing treatments to live 2 years in a miserable state of dementia,dialysis and bed ridden hell on earth.

My dad should never had any of the heroic proceedures that kept him alive in a poor quality of life existence.The paradox is I was right there helping to make the health care decisions that ended up giving him a poor quality of life that my dad would have never agreed to. The problem is that when you admit your aging eldely parents to an ER they automaticaly do the things they are trained to do.They "save" lives. They keep rescuing the dying for every emergency they encounter.You as a family member are caught up in the care offered to your loved one and can't stand back far enough to see the big picture.

If I knew back then what I knew after the treatments I would have opted to let my father pass the way his body had intended for him to die.No heroic measures to keep a sick dying body alive.There are worse things than death. Watching your father suffer in a nursing home in a diaper unaware of the world is horrible.
Ken I couldn't agree more with why a doctor knowing the inevitable outcome would opt out of end of life treatments.

Rod, I am sorry to hear about your father's long-term suffering.

It is so difficult, maybe impossible, to recognize that point at which someone's life will begin that downward spiral. And unfortunately for some like your father, it is a slow agonizing process.

Ken's article is an interesting one, and I agree with the points he makes. My own Advance Health Care Directive reflects this.

As a practical matter, should you or your loved one find yourself in a U.S. hospital and want to have your wishes in this area followed, it's important that you make your wishes known often and emphatically. Better yet, make sure you have an advocate, and that that person be able to vigorously make your wishes known. Hospitals are immensely powerful entities, and once within their clutches many forces come into play.

European hospitals operate somewhat differently. Many countries realize that health care expenses are not infinite, something U.S. society is not ready to recognize yet.

Quite to my astonishment, this article has gone "viral". It has been cited on over 25,000 websites, and has been read by over 400,000 people.

I'm being interviewed on monday on NPR (Patt Morrison Show), will probably be interviewed on another in NoCal, and have been asked to speak at a conference in Wash, DC.

I am emotionally numb, and absolutely stunned. What I thought was a particular interest and passion of mine, that interested few others, apparently has touched a national chord.

I only post this, because I had absolutely no concept of this happening. It shows that you can't tell what can happen if you follow your passions.

The dilemma that Rod so eloquently spelled out above is affecting almost every family I know -- in one form or another. I have screamed at my family, friends, neighbors, strangers.... the walls, as to why oh why did they "save" my father yet again, so that what would have been an instant death is transformed into a slow, agonizing living death for both the patient and those around him/her.

Yeah, to say that it is a timely article is the understatement of this year.

Ken,
Its been the elephant in the room for decades. Might this turn out to be a turning point for our approach to treating those in their final days?

Movements have to start somewhere. Look at the OWS, and now the phrase "99%" has taken on a life of its own.

Ken,

Upon reading your article, I can certainly understand why it has gone viral. Excellent article -- well written, personal, and very timely and relative. It touches where a lot of people are at, I think, esp. since our baby boomer generation is now aging en masse.

It was also nice to read some of your personal history and stories beyond what we see here. I knew you were a doctor, but in that specific area, not much more than that. To hear about Torch and your other interactions with people was very touching. I think your article made people think, and it did so in a compelling and disarming way.

Congrats on such a good article, and on the upcoming publicity surrounding it.

CaT

Bee is so right it is a dilema. It is also a tough decision when you know what is best for a loved one but you have doctors doing what they were trained to do.You as a family member are usually taken out of the equation once you take them to the ER.
Ken it was a very well written article and provoked an amazing emotional response from us all.

Ken, your well-articulated observations deserve viral attention. My wife's grandfather died with no warning. We are watching the agonizingly slow, freedomless, degrading decline of her grandmother. I'll never mourn the suddenness of an older death again.

Which brings this to mind...

On or about 17 March, Oates, while apparently lucid, stepped outside the tent, saying, by Scott's account, "I am just going outside and I may be some time."

for more on Ken's article and Ken himself:

http://newoldage.blogs.nytimes.com/2011/12/30/when-doctors-face-death/

I usually avoid "The Chat Room", but this thread caught my eye. Ken, your article was right on the money. It was also very timely, since I've resolved to find the time and money in 2012 to do a proper job with all that will, trust, advance directive, and power of attorney paperwork that I've been putting off.

I can just add one point: As an atheist, I see the hand of the religious pro-lifers contributing to the problem you so forcefully describe.

Bob, I respectfully disagree. No 'hand' of pro-lifers (for the unborn, the very young, or the old) or any other conspiracy. Ken and I are 59 and 61 years old and have seen a lot in our medical careers. I have never ever had a end-of-life decision presented to me by a family as a religious choice, only a personal choice (and damn the government - keep them out of it, except, wait, Medicare pays for this stuff , and ....what is ObamaCare gonna do?). The only thing closest to it might be a Jehova Witness/other and whether or not they will take blood or be an organ donor/recipient.

Perhaps we would be stick plainly to the thoughts in Ken's original post.

From my perspective -- after the patient dies -- I can really see how the comfort/care of the patient was the number one priority with the family/decision makers. I deal mainly with religious families (the cemetery is owned by congregations) from mildly observant to Orthodox, and hands down, very little of the end of life decisions were dictated by anything other than raw emotion. Now, when it comes to burial rituals.... suddenly everyone is Orthodox!!

I cannot stress how timely this topic is, due to the fact that it asks a person to re-define what a merciful -- in a non-religious definition -- death really is(current psyche holding it counter-intuitive to "deny" prolonged life care)

Bingo!!! Nail on the head once again Bee.Raw emotion interferes with rational decision making about what is really in the best interest of the dying patient.It is counter-intuitive to "let one die" as nature would have it.We hold on to the "hope" science provides.As Ken so aptly said doctors have seen the outcomes and tend to choose natures exit strategy rather than to artificially extend life only so briefly and sometimes miserably.
I had prostate cancer in 2007 and had a radical prostatectomy.4 years later I experienced a recurrance . I had 40 radiaton treatments from December 2010 to Feb 2011. Eight months later (now) I have my 3rd case of prostate cancer. Medical treatment for this cancer has failed me. This time after being diced and nuked I am treating my cancer with alternative care.I will also exit this life on my own terms.There will be no more slicing, radiation or chemo. I will live as long as my body can do so on its own ability.I plan on a long natural life with many more trips up Whitney.Exercise as medicine in my 2012 mantra when i start my re-hab for my shouder surgery I am having Tuesday Jan 3rd 2012.I am totally OK with the way things are.C'est la vie.Que sera sera, whatever will be will be.
I hope to climb MW with some of you this year. I am excited for my future.I plan on being in the best shape of my life in 4 months.

Thanks, all, for the comments. One of the absolutely humbling aspects of this experience, is people posting about their incredibly personal experiences that relate to the issue. I can rarely read one of the many forums/blogs, without being emotional. Some of the stories are just anguishing.



Bob, one would think that might be the case, but it has not really been my experience "on the ground", in individual cases. I practiced most of my career in a fairly conservative Catholic hospital (I'm not), but I never felt any pressures on these decisions, nor felt that I was being "watched" by the institution.

Another issue that relates to the difference, is that docs talk about this to our families and friends all the time. There is no unclarity as to our feelings. This has not often been true of the general public. The problem comes when a patient can no longer make their own decisions, and the family is stuck doing so, in the absence of written directives. They will often do what they think is right, even if that is NOT what the patient thought. Is this common, or just conjecture?

J Clin Oncol. 2003 Feb 1;21(3):549-54.

"In the near-death condition in patients without LWs (Living Wills), there was disagreement in 46% of patient-caregiver pairs about CPR, in 50% about mechanical ventilation, and in 43% about tube feeding.

CONCLUSION: Although most patients and families endorse the primacy of the patient in decisions at end of life, the majority do not take supporting actions. Disagreements between patients and families about the use of life-sustaining measures in patients without LWs may result in patients' preferences being superseded at end of life."

Sadly, this has also been my experience.

Most of my adult life, the most common after the fact query has been "Did we do enough" (life saving procedures). After witnessing the harrowing outcome from a Pancreatic cancer treatment known as The Whipple Procedure, I began to ask the new query, "Did we do too much?".

I continue to ask this new query each and every time they miraculously "save" my father.

Rod, with all my heart, I hope for the best of all you deserve for the rest of your life.

In 2009, Obama's healthcare proposal required health insurance to pay for a doctor to discuss end-of-life options with patients. This could have helped save hundreds of thousands of dollars for each patient who opted out of the pointless treatments Ken described in his article. The Republicans/religious right/pro-lifers killed it by claiming that government "death panels" would decide who would and who would not get care.

In the Terri Schiavo case, the Florida legislature, the Governor of Florida, Republicans in Congress, and President George W Bush all worked to keep a brain-dead woman on life support for seven years. She would still be on life support if they had their way. A Wikipedia article concluded with "Various organizations and protesters demanded that Schiavo's feeding tube be reinserted. Most of these groups were affiliated with the Christian right."

I conclude that the Christian right is contributing to the problem you describe.

yes, those are certainly high-profile cases, but not what we usually see "down in the trenches" where common sense prevails in the absence of governmental-intrusion.

I happen to agree with you on many aspects of this discussion. Just as an example, let's look at the history of End Stage Renal Disease (ESRD). From Wikipedia, with my underlings:

"In 1972 the US Congress passed legislation authorizing the End Stage Renal Disease (ESRD) program under Medicare. Section 299I of Public Law 92-603, passed by Congress on October 30, 1972, extended Medicare coverage to Americans if they had stage five chronic kidney disease (CKD) and were otherwise qualified under Medicare's work history requirements. The program's launch was July 1, 1973. Previously only those over 65 could qualify for Medicare benefits. This entitlement is nearly universal covering over 90% of all US citizens with severe CKD."

So there you have it. Entitlement. Known otherwise as OPIUM or OPM - other peoples money.

Before that, at my institution, there was a diversely-made up "panel" to see if it was the right thing to do (for those patients considering using the improving field of dialysis and transplant) from a personal, social, economic, medical and other perspective. After that, the government had basically decreed that no one should die of kidney failure even if they were hopeless, useless, nursing-home bound, brain-damaged, prisoners, etc. The pendulum had swung way too far over those years and seemingly is now swinging the other way. So rather than using a sound-bite to call the proposed decision-making panels "death" squads, maybe they should be called "common sense" squads. On the other hand, are such panels needed, versus, say just the discussion between patient/family/physician? But the scenario is more difficult when there is no family, or the patient is unable to understand or communicate for a variety of reasons from medical to language barriers, intelligence, etc. Who gets to decide? The bean counters? At some point the answer is yes, they need to be involved as well. How much is a life worth? A former useful life worth? A no-hope life worth? An illegal alien life worth? A drug-crazed high school dropout life worth? A 90 yr old nursing home resident with hip fracture? And so forth.

This is a Gordian Knot.

Thanks everyone, for this discussion, beginning with Ken's post.

Bob, in that sense, I agree with you.

I also agree with Harvey, though, that for the most part, that doesn't affect us in the trenches.

Doctors don't get paid to have discussions on end-of-life issues. Does that translate into those discussions not happening? No. They happen.

In my 28 years of practice, and hundreds of terminal cases, I can vaguely remember a couple in which a religious advisor of any sort was involved in any decisions...and generally, they were helpful with the family coming to grips with the reality of the situation, because they, like us, had been down this road before. I wish there'd been more.

In my writing, I have been exceedingly careful not to characterize anything in a way that would be seen as tilting in one direction or the other politically. I know that if I do, I will be attacked by the other side. That's the political game, which is played for high stakes.

The article states the broad-spectrum dilemma/promblem, exquisitely. The end of life decisions/issues in my experience, level the field, rendering the participants emotionally incapable of applying higher order reason/philosophy/psychology/liturgy (most of the decisions are far more subtle than "to plug or unplug", rather its a 30sec moment of to apply CPR, insert the lung tube or a 24hr decision for another "procedure"). Its raw.

Bob - I think you make an excellent (and might I say obvious) point there are groups which work hard to shape public policy, and health care review panels is no exception. That they don't typically get involved in specific cases - except high visibility ones like Terri Schiavo - doesn't mean they are not working hard to support their point of view.

Other countries, notably in Europe, have come to the realization that resources are finite, and attempt to put in place those processes which distribute those resources. We (the U.S.) operate as though resources and growth are infinite. Not much will change until/unless we can accept that there are limits.

Time Magazine, now.

Article here

You're going to have to write a book, Ken!

Here's the Time link:

Shannon Brownlee on What Doctors Know — and We Can Learn — About Dying | TIME Ideas | TIME.com

A good quote from that article, with a link to "POLST" physician forms that people can fill out:
"Some of the most informative forms can be found at Physician Orders for Life Sustaining Treatment Paradigm."

Funny you should say that, Steve. I was contacted by a literary agent from a major publishing house last week to do exactly that. He specializes in working in developing an article into a book. One of his last authors was Siddhartha Mukherjee, who wrote The Emperor of All Maladies: A Biography of Cancer.

Amazing book, strongly recommended.

It won the Pulitzer Prize, so he must know what he's doing.

Could I get an autographed copy of your first edition?

I second the recommondation, Ken -- the book was awesome. Check out the interview with Terri Gross, too; the author is a humble, elegant man.

I've met Sid, and you describe him perfectly.

Steve, you'll have it.

an adaptation I'd written of my original article appeared in the Wall Steet Journal Saturday.

Why Doctors Die Differently

As of this evening, it is the 2nd most read article by readers, and the most emailed. Quite something to see it on the front page Sat morning.

Amazing. I am astonished by the "legs" of this. It was published in the Guardian in england a week ago, and I was interviewed on Irish Public Radio (after the Farming Report with Mairead Lavery)

IPR @ 7:58

Australian Public Radio next week.......

"... Physicians really try to honor their patients' wishes, but when patients ask "What would you do?," we often avoid answering. We don't want to impose our views on the vulnerable."

Personally, I don't let a doctor "off the hook" by sidestepping the question. And I would not create a long-term relationship with a physician unless I felt he/she would give me their own view on such difficult matters. After all, they deal with these issues frequently, and if they withhold their opinion on this, then my emotional response would be - "OK, what else are they withholding", and my trust in their judgement is gone.

You touched a nerve. I'm glad that the WSJ picked this up. Ken, thank you for the clear and well expressed thoughts.

Brent N

That's ok, Kevin. I think we generally won't let you off the hook of making a decision.

First, not everything is black and white, but sometimes shaded with grey, and it may not be so easy to know what one would do...particularly when the decision might be very laden with what a person's philosophy would be.

Second, you've never experienced expressing your opinion, then having a very angry family come at you with a complaint that you were..... 1. trying to kill granny, or 2. trying to keep her alive so you could fleece more money out of her....by forcing your philosophy upon her. These are often accompanied by a threat of a lawsuit, which really enhances the situation.

Third, you've not been fired from a case because what you expressed in your opinion... which was not what you thought should be done, but was only what you would do, yourself....makes the patient feel uncomfortable that you will carry out their wishes, that are different than the opinion you'd expressed.