Check Out Time (a neurologist's take on end of life care)

[Sgent]

I'm sure I'll get flamed by somebody over this post, but I've been stewing over this for a few weeks, and just want to say it.

I haven't ever saved a life. No doctor has. We may prolong the inevitable, but we don't save anyone.

We aren't immortal, and weren't meant to be. We die. All things do. Plants, animals, even stars.

Death is as much a part of life as birth.

And yet, at times people chase medical science as if we have immortality in all our gadgets and pills.

Why am I writing this?

A few weeks ago I had a hospital consult on a horrible, awful, sad case. Lady in her 60's with advanced cancer. It had spread through every organ of her body. Brain, lungs, bones, liver, intestines. You name it.

She'd had surgery. And radiation. And chemotherapy. Established treatments. Experimental treatments. Alternative treatments. Her husband had taken her to every major cancer center in the U.S. (using YOUR insurance premiums, of course). And every single one told them there was no hope. So he fired them and moved to the next center.

She landed at my hospital, somehow. Sick as shit. Ended up a ventilator. Tubes in every orifice. Comatose from every body system failing. Suffered a bleed into the brain. Seizures. You name it.

We health care people have seen this stuff a million times before. But my readers who aren't in the field may not have. And trust me, this situation happens A LOT. More than you'd ever believe. The media leaps onto cases like Terri Schiavo as if they were rarities, but in reality cases like this are frighteningly frequent, every day, in every hospital in the country. Really.

And of course, her husband is beyond denial. He's not a bad person, just hears only what he wants to. He has the room covered in family pictures and religious symbols. He tells me his family is hoping for a miracle, and knows it will come.

So who is he REALLY doing this for? Not for her. To the sad shell of what was once a beautiful, vibrant woman what he's doing is more likely some form of torture. She's gone, sir. Elvis has left the building. But he won't hear that, no matter how many doctors, in innumerable ways, and many times, tell him.

Ask yourself: How do you want your life to close down?

How many of you said you want to die incapacitated in a hospital bed, with plastic tubes in your urethra and butt, and down your throat? And another one in your nose? And maybe a 5th one in your abdomen, going directly into your stomach? With IV lines going into veins in both arms, the few veins that haven't already collapsed from repeated IV lines in them. And the tube in your throat keeps forcing air in and out. Does that sound like a comfortable way to end your days?

I'm not, by any means, arguing against critical care. Some people end up like the above, with a realistic plan of recovery. And many do. I'm talking about people where this is done with absolutely no goal other than to drag life out for as many seconds as possible.

And so back to my lady. Me and 4 other docs (neurology, cardiology, pulmonary, renal, and oncology) had a 1 hour meeting with husband and his grown kids. We told them this was futile. That what we were doing to her was prolonging her suffering. They all listened. They accused us of being "too negative". The next day they transferred her to another hospital. So I have no idea what happened after that.

Beyond human suffering and reason, let's look at this in the cold hard facts of money. Yeah, I'm sure you Sarah Palin fans will accuse me of putting a price on human life. But hell, your insurance company already does, whether you want to believe that or not.

This woman's care has cost at least a million dollars here, likely a hell of a lot more. I'm pretty sure this family's premiums don't cover that, and I know they aren't wealthy. So the money is coming from their insurance company, which is YOUR premiums.

So let's say futile care for this woman cost $1.5 million dollars. Would that money be better on helping treat people who had a more reasonable chance at recovery and significant quality of life? Maybe several?

Yeah, this is a slippery slope, and there's no easy answer as to where you draw the line. The military deals with this in battlefield or disaster area conditions, where you put your resources to those who are salvageable, and letting those who aren't die. But you can't say that in the polite world of modern medicine.

But for all the controversy over the phrase "death panels", ask yourself this- are they so unreasonable? In a case like this, should, say, a panel of 3-5 certified doctors in oncology, with no ties to the patient or the insurance, objectively review the the data and say "Stop this madness"? Or maybe determine further treatment would be beneficial?.

If they decide it's futile, I'm not saying that treatment should stop, but at that point the insurance company can end it's involvement and the entire financial burden falls on the family. I suspect that when they realize realistically how much futility costs to torture a loved one, they'll let her go.

Money, unfortunately, is a finite resource. You have to pay hospital staff, and drug costs, and facility electric bills, and supply bills. In a perfect world I could support my family and care for patients for free. But I have a mortgage and kids and bills, too. As do the nurses and other hospital staff.

Balanced against this finite resource is human suffering. Which is infinite. And you can't keep paying unlimited need with limited resources. In any situation.
Posted by Grumpy, M.D. at 4:16 AM

------
The author gave explicit permission to forward this post.

http://drgrumpyinthehouse.blogspot.com/2010/03/checkout-time.html

[ddeclue]

1. You're the doc and know a lot more about medicine than the rest of us but ultimately it is OUR lives

and therefore OUR decision. Personally I hope someone does make every possible effort on my behalf and doesn't call it quits just because a doctor or an insurance company said "stop". Other people are entitled to make other decisions - if a patient doesn't want their loved ones taking "futile measures" then that's what we have lawyers and living wills for.

It is indeed a slippery slope and once we start down it, we will quickly go to the other extreme and I don't want my insurance company making that decision for me any more than it already would.

Thanks for all you do to help others.

[physioex]

3. I agree with what you are saying....

However healthcare is a finite resource. All the money spent on this woman is preventive care that won't be given to others. Diabetes screeing, mammograms, colonoscopies, cholestrol screenings etc. etc. So care given this woman is care denied others.

On Edit: There has to be some point we agree as a society that we will not fund a certain level of care.

[EFerrari]

8. It's going to be a long time before we have to worry about funding too much care

as a society. And, btw, I have a hard time believing this story. What insurance company would sign on off on going against medical advice and hopping from hospital to hospital in this manner?

[Sgent]

4. I'm sorry

I just realized that the OP is a little misleading. I'm not the person who wrote that, it was written by Grumpy, MD a neurologist blogger. I'm in the medical field but not a doctor.

[elleng]

2. I hope my family makes the same kind of reasonable decision we did for my mother last year,

in spite of my 'stranged' husband's nasty admonishments to the contrary; I'll speak with them soon, and put my wishes in writing.

Unfortunately there are apparently as many people around with what I'd consider bad judgment, as you appear to think, as with good, decent, reasonable judgment.

Rest in peace, all.

[Abq_Sarah]

5. When you're in your 50's

The 60's suddenly don't seem that old.

That said, I do have an advance directive. Based on what I want, not what makes the most financial sense to someone else.

[demodonkey]

6. Sorry Grumpy Doc, but I no longer trust the vast majority of those in your profession...

Maybe you are a good one (I don't know you and I have no way of knowing) but far, far too many doctors are nothing more than shills for insurance companies and / or their own (or their hospital's) bottom line. More important to get another Mercedes or a bigger indoor swimming pool than to fight for patients to get real care.

Four years ago my mother had a severe stroke, at age 87. She got a little token treatment but then her insurance and others were perfectly happy to give up on her and end her therapy. Fortunately she had a good long-standing physician for decades before this happened but once she got into the system of 'facilities' she got separated from him and our family descended into a virtual hell where everything is about money not care.

Anyway, if I had listened to "medical advice" (your mother is 87 years old, there is only so much that can be done, there is only so much that is covered, the money we spend on therapy for her could help others, yada yada) she would by now be warehoused in some miserable nursing home, or more likely be she would be DEAD.

Instead, I've fought hard for her rights and advocated that she get every SCRAP of care and therapy she can via every scrap of insurance she has.

I know I am hated by doctors, social workers, and other medical staff because I won't knuckle under and bow to them. In the four years since my dear mother had her stroke, I've been lied TO, lied ABOUT, sued, threatened with the loss of everything I own by these greedy subhuman PIGS... but my mother is home, watching the news in the other room right now. She is not only alive, she has a LIFE which would be long gone had I caved in and listened to the money grubbing, insurance company hugging "medical professionals" on some death panel.

Sorry.

[EFerrari]

7. This piece makes no sense to me on a few levels but most telling

is the idea that the featured patient's husband was demanding futile care with "YOUR PREMIUMS". That's how wingers think.

[demodonkey]

9. I've already heard that about my mother...

...and she was NO way terminal. Just old and disabled, and therefore somehow not deserving of therapy and help.

[Bluebear]

10. 'using YOUR insurance premiums, of course' - no, they weren't "MINE"

[csziggy]

11. Having watched two relatives make the decision for themselves

I am lucky that I have their examples to follow. In both cases, the prognosis was certain - both had cancers of the type where the predictions are only made in months, not years. They both beat the predictions but when the time came, they had made their choices and saved the family from having to do it for them. They both left directives to withdraw care when it would have only prolonged their agony and not have given them any quality life.

I don't think Dr. Grumpy is advocating giving up on family members simply because of financial reasons - what I take from his article is that the patient might make a different decision for themselves and for their families. And although we want to deny it, money is a major consideration - maybe not during the time when we are trying to hang on to those we love, but afterward when the rest of the family has to move on and survive.

In the two cases I have been through, there was insurance coverage - one had a catastrophic policy to cover major medical events, the other had a comprehensive plan to cover everything. In the end, the initial deductibles made little difference and the overall cost to the family was horrendous even with insurance. The treatment choices were NOT made because of the costs - they were made in the hope of letting our loved ones have quality of life as long as possible and to not prolong their pain.

When it became obvious that nothing we could do would allow that, each case called for a different approach. My sister with brain cancer had by then lost her speech and much of her movement. She went into a nursing home with hospice care. She left a directive to withdraw support when she could no longer eat. It took over a week for her body to die, but she was no longer in it days before that. In my opinion she was gone before care was withdrawn.

My brother in law with pancreatic cancer made the choice to stop care when the chemo no longer had any effect on his tumors. He weighed only a little over one hundred pounds - at six foot four, he was skeletal. In order to keep his health insurance he worked up until he decided to stop care. After his last day of work the entire family went out for a dinner. A day later, he was in the emergency room because of his pain. He returned home and hospice workers helped my sister care for him for the next three days until he was gone.

This is why families need end of life counseling - not to force them to make decisions to save money but to let them make intelligent, informed decisions and give them the right situation to share their choices with each other before the choice must be made for the patient.


Our family was lucky in that the first in my generation to have a critical illness had the training and disposition to make a reasoned choice. My sister was an associate professor of physiology at a medical school with a specialty in the brain, so she knew exactly what her prognosis was and had the knowledge to make her choices. She also, while she could still talk, encouraged all of us to think about what our choices would be.

The year after she passed, I had my first major operation and made sure my end of life directive was given to everyone involved in case something went wrong. I've reviewed that and distributed it again to the doctors, the facility, my family and representatives before each succeeding operation over the years. I want no doubts about what my choices are.

[Duende azul]

12. He lost me with the capslock in "YOUR insurance premiums"

[NC_Nurse]

13. People die. Americans have a really hard time accepting it. We love to blame

the messenger. It's like the Repubs we call crazy because they don't want to pay taxes, but they don't want to lose any services either. If you want
extreme measures to be taken to prolong the lives of dying people, you have to expect exorbitant medical insurance premiums, high taxes for Medicare and Medicaid,
and the cost of such care to be reflected in the price of every medical bill.

I've seen many families who can't accept their loved ones death and put them through long stays in the ICU for a few extra weeks of agony. I don't think it helps anybody in the end.

It doesn't matter what kind of system we have, single payer, private insurance, or whatever...these situations will arise. It's too bad everyone's so paranoid that they think doctors are
happy to pull the plug to save money. Actually, the docs make way more money keeping dying people alive. If they were in it for the money, they'd keep them plugged in forever.

[BlueJazz]

14. Doc...This is one post that I agree with 100 percent. If anybody wanted to hear..

..my views on health care, they could just read your words. Excellent!