Thursday, March 4, 2010

Checkout time

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.


Anonymous said...

As a fellow neurologist who also sees this all too often as well I say - AMEN Dr. Grumpy.

Andrew S. said...

I think it's an interesting discussion, especially with end-of-life care being such a large chunk of medical dollars spent every year.

People are afraid, however, of putting their lives in the government's hands. I understand that, in many ways, it's in the insurance companies' hands now. But folks can change insurance - they feel they have at least an illusion of control and they feel the market will punish any insurance company that gets too far out of line.

I don't think it's unreasonable to say to yourself "gee, our government has screwed all this other stuff up - maybe they won't screw up health care (though some would say they already have, to some extent), but if they do... what then"?

The Good Cook said...

Well written.
This is why it is vital that everyone have a living will.

I'm sure this woman would never have wanted to be treated this way. Dying peacefully at home (with the wonderful support of Hospice) is the most dignified end anyone could hope for - other than dying quietly in your sleep - but how many of us can count on that???

Julie said...

I've made it very clear to my hubby that under no circumstances do i want to end up like this lady ... i have recently heard about 'advance health decisions' and 'guardianships' which are legal ways to specify your desires in this regard and i'm going to be looking into this option too.

For the bigger picture, yes, a panel decision sounds like the way to go, prolonging a life where there is no hope at all of recovery is (in my book) just a form of torture ... for everyone concerned.

The RPh said...

It seems you have been touched by this woman and her suffering. I agree with the Good Cook, living wills are necessary! It is tough on the health care workers who see our patients suffering and their loved ones suffering as well. We should all record our wishes so there will be no needless suffering for anyone.

Amanda said...

I'd like to give you whatever the opposite of a flame is!

Well written!

Anonymous said...

Thank you for putting into words what I think every day.

I am an oncologist, who believes that there is a point where additional therapy will frequently shorten rather than prolong life. However, in cases like this, the therapy is obviously prolong this woman's life, but there is absolutely no hope for recovery or viable outcome.

Yet, time and time again I read that it should be the family or the patient that gets to choose. They get to choose to squander all of our resources. Some families simply have no capacity to grasp the fact that there will be no miracle.

Yes, I fear the government or insurance companies being allowed to make the choice. They have demonstrated time and time again that they lack the medical knowledge to do it right. Craziness like this NEEDs to stop, though.

Grumpy, M.D. said...

That's why I propose a panel of doctors, without ties to either side.

Anonymous said...

Let me second the kudos from Amanda.

And let me add that any flaming could only possibly come from someone who has never SEEN this particular form of torture up close and personal, AND is so totally self-absorbed that they cannot see the harm done in cases like this to everone--the pt, the medical staff, and yes, the bottom line.

We have to stop treating health care as a sacred cow, somehow immune to realities of limited resources. And we have to stop viewing death as an optional item in human that can be overcome with more time, more treatments, more surgery, more money. I had a family member of my Hospice pt tell me with a straight face, "Well, IF I ever die...." Really. And really sad.

Like other posters, I have Advanced Directives and have shared my thoughts with fact, it is also on my Medic Alert bracelet along with allergies and disease conditions, just in case.

Hospice care, given with compassion and great care, is the answer to terminal illness. And the cold facts need to be addressed as well. If this man wants to continue futile treatment after doctors and ethics committees have evaulated the case, then he should be free to do so, on his own dime...or let his wife be fully covered in every sense of the word by Hospice care.

And finally, if he is so relgious, why is he afraid to let his wife go to Paradise? Or is he more worried about HIS loss than her potential gain. Just wondering.

Pattie, RN

Unknown said...

From an EMS perspective - I (and several of my coworkers) have always enjoyed your writting - it is generally witty and entertaining. This may be the best one I've read so far. I work in critical care transport, we see too many of these exact patients - shuffling them back and forth from nursing home to emergency room with frequent pneumonia (dying person's disease), UTI's from in-dwelling cath's, and occasional skin break down issues...and the mental status of a turnip. Truly sad.

Thank you Dr. Grumpy, for your well written thoughts.

Kim said...

I agree with everything you have said in this post.

wayne said...

I agree with you. We made the decision for no further measures for my dad. and he passed at home where he wanted. More people need to ask "Who am I doing this for"

Anonymous said...

And they put Dr Kevorkian in jail. They should have given the guy a medal instead.

Anonymous said...

Well said!

Unknown said...

It's refreshing to see that most folks are in agreement here. Thanks for taking the time to write and publish this, doc.

Unknown said...

This is probably the best post I've ever read of yours.
And I agree with you 100%.

Thank you.

Mickey said...

Well said. I totally agree.

webhill said...

I completely agree. I am so glad that in my practice I have the complete freedom to tell people like the gentleman that you describe here that "I refuse to provide the services you are requesting, as I feel it would be cruel to artificially prolong life in these circumstances." I wish that doctors felt able to do the same thing!

Grumpy, M.D. said...

Feel free to forward to as many people as you want.

I think part of the problem is how few people actually realize what goes on at the end of life in these cases. Knowledge is good.

TheLittleFlower said...

I agree with you Dr Grumpy. I refuse to believe that prolonging life does anything for the person. It is all about the family members. The selfishness of family allowing their loved one to suffer. Quality of life is so much more important than quantity. I had this discussion with the dean before I was accepted into pharmacy school. I told him, medicine is going into the direction of quality, not quantity of life. Viagra is one example. But I digress....
Bottom line, nobody should have to suffer the way this woman is suffering. I prescribe cold water over the head and a slap in the face for her family.

Anonymous said...

Thank you for your honest, heartfelt post.

Dementia has finally caught up to my grandma, in her 90's, and she's at the end stages now, where it's affecting her body, not just her mind. I saw her this weekend.

Our family is doing the hospice route-make her comfortable, but don't prolong life. So, a tricked out wheelchair, but no feeding tubes or suchlike.

It was really hard to see her in such a bad state at the nursing home, and knowing she's got perhaps weeks left. But your blog post put that in perspective for me. Far better for her to go with some kind of dignity than to be hooked up to machines that only extend the life of her body.

mike140 said...

As someone who was in this man's shoes I understand how difficult it is to let someone you love die. My wife was in her 50's when I agreed to take her off life support. It is a decision I live with everyday. My wife knew I loved her enough not to prolong her suffering. Well written and I support your idea of a panel, but there will always be emotional family who can't understand. They are the ones who need treatment.

stellans said...

As only a health consumer, not a professional, I have to say I agree -- which is why my husband and I both have Living Wills. HOWEVER... I do NOT wish to end in pain. Doctors and hospitals must get off the "Oh, no! She might get addicted" (really? At this stage? So the hell what?) mindset and allow the patient to medicate herself into oblivion if that is her wish.

My aunt died moaning in pain because her doctor refused to prescribe enough pain killers. End-stage cancer. That terrifies me more than anything else, because I am a total chicken when it comes to pain (I say this after bearing three children through 'natural' childbirth).

Amanda said...

Very well-written, Dr. Grumpy, and I agree.

My maternal grandmother had a stroke almost five years ago. One minute she was about to eat lunch and was packing for a cruise, and the next she just fell to the floor.

She was hospitalized for perhaps two days, with the only assistance being an I.V. The respiratory therapist and everyone made it clear to our whole family that this... just wasn't her. They were kind, sympathetic, and clear.

My mother signed the DNR. And my grandmother died.

I miss her. And I'm glad we didn't keep her here longer for our own comfort.

Silena said...

I worked in a Nursing Home for awhile and saw this happen everyday. You can't make them see that what they're doing is for themselves and not the patient. :(

Layla said...

I couldn't agree more. I have seen similar situations, and the wall of denial is impossible to breach.

I think it should be up to the individual team of doctors, in this case perhaps the critical care team, to say 'enough is enough', put a do not resuscitate order out and refuse to intubate such patients or take them to ITU. A very brave thing to do, but the right thing for the patient, whose best interests are the main priority, NOT those of the family, however forceful they may be or however litigious.

As long as the rationale is explained to the family and fully documented, there is no legal recourse for them to sue the team.

Easy to say, incredibly hard to do in practice. Perhaps an independent panel is a good way to go.

sjcottrell said...

Three years ago, my family went through this. My mother fought lung cancer for more than four years, and we were happy to have that time with her.

That was good time, even with the radiation and chemo. But the disease caught up with her.

I can sympathize with the family. I lived in denial for months, prayed for miracles. I was not ready to let go of her.

But she had always told us that she didn’t want to live “hooked up in a hospital”.

Taking my mother home, holding her hand as she died, was the hardest thing I have ever done. But it was absolutely the right thing to do. I’m glad that I could give that to her.

I think that this family is really going to regret these decisions, later. Their last memories of their loved one will be hospitals and tubes and fighting with doctors.

As much as I agree with the good Dr. Grumpy, my heart goes out to them.

Kat's Kats said...

My grandfather was bed-bound at home and decided one day to stop eating. What did we do? We called Hospice and acceded to his wishes. He passed away the day they came to the house, in fact, about the time the papers were signed.

My grandmother lived at my mother's house once she became bed-bound from multiple strokes & TIAs after having lived at her own home with 24 hour care. She passed away there not knowing who any of us were, but with us knowing that that was what she wanted.

In fact, when they helped my parents buy the house, she told my mother not to change the wallpaper in a certain room since that was where she planned to pass away. Our family has always done this. We see no reason to subject anyone we love to spending time on this Earth when their spirit is ready to move on and their body has finished its journey here.

Brava for a well-written post. It is truly torture to keep someone trapped in a body that way. All of my kith and kin know my wishes, and all of them feel the same way.

Courtney said...

Thank you for this post. I've been struggling with how to have a discussion with my parents lately - I have an upcoming surgery I'm getting ready for. In preparation for that, I've had many long discussions with my sister who has agreed to be my health care representative, but I believe that my parents would feel like this woman's husband and I have significant anxiety about asking my sister to make a reasonable decision at the risk of her relationship with my parents if it should be necessary. I'm going to share this post with them in the letter I'm writing about my living will - I believe it will help them to understand that there is a point where "care" is actually harm.

Anonymous said...

All these responses and no flame yet, nor will you get one from me. This should be required reading on both sides of Congress. The hard part even for a medical panel such as you propose, is where do you draw the line? I know that you will know when you see it, but how do you codify or formalize the process by which the panel determiones that further measures are futile?

Albinoblackbear said...

You basically outlined why I could never be an intensivist.

I sent my entire family the link to "Engage with Grace" so they could think about and talk about their end of life wishes. I said many of the things you did with regard to the medical torture that can exist if they want everything done to preserve 'life'.

Thank you for writing this post and hopefully sparking some discussion.

Anonymous said...

Well said, Dr Grumpy. I agree with other comments stressing the importance of living wills.

Both of my parents died 9 years ago - my mom from COPD, and my dad from lung cancer. Neither wanted heroic measures. Although it was tough at the time, I find comfort in the fact that neither of my parents suffered needlessly over an extended period of time.

Don't forget health care powers of attorney. Make sure there is someone who knows what kind(s) of treatment you want/don't want who is legally able to speak for you when you cannot speak for yourself.

Disclaimer: IANAL, just trying to help cover all the bases.

The Reader said...

Another round of applause for this post. Eighteen months ago, my dad laid in bed, in the nursing home, next to his wife of 24 years, and held her as she slipped away. She had MS, dx'ed at 17, and died at 48 (she probably pissed off her neurologist b/c she refused most treatment...). But, she went into the nursing home with the documents lined out -- no feeding tube. No pureed foods. No end of life measures. And we respected that, and prayed "Lord, take her soon" when the suffering got bad and more & more of her abilities slipped away. The last decade of her life was about giving her as much dignity as possible -- and dying with so many tubes in place would have countermanded that to no end.

Thanks for saying the hard stuff, Dr. Grumpy.

Gert said...

This is exactly why I'm a hospice nurse...I believe human beings will never be immortal. We must all pass on, end of story. Why should dying consist of unending pain and suffering? Of course, it should not.

But, I want doctors to make the call....not Washington DC government stooges or committees, but the docs in charge of the case. I want doctors to be able to make definitive treatment decisions....not just run test after test and treatment after treatment out of fear of malpractice lawsuits.

No health care reform without tort reform.

Helen said...


danielle said...

This is why I no longer work in oncology - and instead I work in the NICU (and only a Level II at that). You mentioned you and several other docs met with the family - were the other disciplines there? Have they had - prior to it getting this far - the support they needed from ancillary services? The other side of this story is that people need to be aware of how painful a Code is - and yes, they are necessary and thank goodness work more often than not - but at this stage of life for example, it would be torture and useless - saw too many Codes on peole who should have been DNR's....

rlbates said...

I so agree with you.

C. said...

This is why we agreed to comfort care for my 65 year old Mother in law with bone cancer.

It prompted my husband and I to write out how we wanted to be cared for at the end of our lives.

No one should be kept alive like that, insurance issues aside.

miss kitten said...

three years ago this past december, Fallcon and i said "enough is enough". and the poor hospital lady said "but there are more..."

Fallcon said i had an angelic smile as i said "but it wont prolong anything, and it may cause him distress. no."

by then, he and i had had long conversations and understood what he wanted. i loved him enough to let him have his way, might be a way to put it.

advanced colon cancer. his intestines blocked by tumors in several places, his liver invaded with tumors. he died dec 25th, 2006. and he was not in pain. i blew up at several doctors along the way because they lowered his pain meds that the pain SPECIALIST had set the levels. its apparently really funny to nurses to see a five foot nothing little fat woman going off on a resident. then the attending caught on and wrote NO MESSING WITH THE PAIN MEDS on his chart. or somesuch.

it is not easy to watch a loved one die. he lived exactly 4 months from the time he was admitted to the hospital. and my heart still cries for him, my eyes too. i miss him. i ache for him. but we did the right thing, and i have comfort in that.

love is putting your loved one's needs before your own wants. i'm remarried now, and he would have wanted that. he hated that he was going to leave me, but glad to go, if that makes sense. he KNEW i was ok with him passing on because i told him so. i loved him enough to tell him so.

kitten, still crying.

CJ said...

That pretty much sums up the dilemma. Well written.

It's the same here in Singapore. I guess the family are trying to play safe with potential guilt, so that they will have rightful claim to the sentence 'we have tried all we can'.

Also some relatives (usually have mouths bigger than their brains) who are too fast to condemn the family of not trying enough worsen the situation.

Johanna said...

My mother suffered a massive hemorrhagic stroke on December 28, 2005. She was transferred to a big-city hospital where the brain bleed had time to become even larger. The neurosurgeon told us she had a 90% survival rate if we put her in surgery, which naturally, we did. She survived all right, but ended up in a vegetative state, much like Terry Schiavo. Almost identical.

The doctors always held out hope, as did we, but the medical system sometimes, alongside of family, push past what is really right and that's letting our loved ones go at the appointed time.

Once she was able to breathe almost on her own, they took her off the ventilator and put in a feeding tube and a trach, so they could suction the crud that collects in the lungs after being sedentary. And it was at that point, our hands were tied, though it was never discussed up front what taking that ventilator off really meant. She was then put in a nursing home to the tune of $8,000/month, just for the bed, not counting the huge cost of medicine.

And she existed like that for 3 years, in what I like to call a personal hell for both her and the family. But we couldn't do a damn thing about it because according to the law, she could "breathe" on her own, and thus we couldn't discontinue feeding her to let her die unless we went through the courts.

After 3-plus years of this, my father petitioned the court to let her go and paid quite a bit of money before my mother's feeding tube became infected, at which time it was "legal" for us to withdraw the tube and allow her to die naturally.

Now tell me, what is lawful about letting an infection take over her body to allow a "natural death" when for 7 days we watched her fade away with cat litter and all sorts of other odor-remedies scattered about her room to make it bearable to be in there versus her dying the exact same way, except not compounding the issue with an open infected wound?

I watched my mother die, but quite frankly, her death had occurred on December 28, 2005. Until February 10, 2009, we just attended the longest funeral known to man-kind.

It's a brutal situation and it takes a very strong person to let go. After my mother died at 5:15 a.m., the room took on a very peaceful feeling, one we had never felt while she was trapped in her broken body. She was finally free and I wish more people would realize that there are worse things than death. In our case, it was a true blessing to see her spirit leave her body and I still take comfort in that moment.

Living in denial is not healthy at all.

Linda said...

Thank you so much this post helped me reaffirm why I let my late husband go after 10 day on life support. Stage 4 non small cell carcinoma. His family still will not speak to me and it's been 6 years.
They claim I did not fight for him.
Why would I want to see him suffer more? Because he would not want to live that way is why!!!!!! No I did not pull the plug. He passed naturally. I walked out and said Thank God his suffering is over.
Funny thing today is his birthday he would be 57.

Hannah said...

When I was 21, my sister and I had to make the decision to take my father off his life support after a (potentially life-saving) surgery.

It all had been discussed before and he made it very clear to us all that by no means would he want to live as an unconscious or severely incapacitated person. It was his last chance, and we all knew it.

Despite his wishes, and especially because none of us could make it to be there when he died, it was the hardest decision I've ever made – but, to be perfectly honest, still the best.

So thank you for this post and for all the comments of those who have faced similar situations. It makes me feel less alone – sometimes it's hard to explain to others who haven't been there or seen it why it can be the most humane thing to do for a loved one.

Me said...

And the husband of this woman will probably sue for malpractice after she finally does pass on.

Back to your point, I do not want to die in this manner and I have it in my will to not go out like this. If I'm done, I'm done. Even if a miracle does happen and I recover from a situation like this, my life will not be the same by any means so why keep going?

The Mother said...

I can't believe they found another hospital that would take her.

Somewhere around 90% of all healthcare costs are associated with end of life care. It's stupidly wasteful, often futile, and draining on both the economy and the family.

We in this country have a "keep-em-alive" mentality--but it's got to go. Before we bankrupt the system.

I'll never forget a patient from my med school days--a 20 yo with leukemia and end-organ failure, who had just flunked the last available protocol.

The oncologists were talking about a bone marrow transplant. The family was talking about getting an opinion from out of state.

I was talking to my lawyer about medical directives and living wills.

Anonymous said...

When my father suffered a SAH due to a ruptured anuerysm, the neuro & neurosurgon gave us realistic expectations. After 6 months of intervention with some progress, he had an irreversible major set back due to errors on the part of certain hospital staff. Fortunately the neurosurgeon had a kind talk with my mother & I stongly suggesting hospice. He explained the likely outcome of continied acute/aggressive care vs. hospice care. The hospice nurses were awesome in making certain expectations were realistic and ensuring that orders were appropriate. (such as d/c standard orders for futile testing that would have no impact. )

sure we could have wasted millions on the one in a trillion chance in a miracle, instead we were able to have a painless (for dad at least) and peaceful passing.

Matt said...

So long as these "death panels" are run by disinterested MD's, as you say (& NOT government-appointed buffoons without medical degrees), I think I would support that, IF all they would be able to decide would be whether the ins co would continue to provide coverage for such people and not whether to disallow them from seeking the treatment and paying for it themselves OOP. And even then, these panels should only be consulted in dire circumstances like these, I'd say, in which the chances of the patient actually surviving are deemed by the treating physician to be very slim.

But I think you have a strong point. If you can get signatures from five doctors who have no interest in the situation, and all agree that a patient's case is futile, that's pretty definitive and iron-clad, and, while it's sad, no one should argue with that.

Of course, "futile" would have to be defined for these purposes, which in some cases is a gray area.

Anonymous said...

You should be happy they left your hospital and feel sorry for the one she dies in. The husband and family are sure to sue at some point.

People like this husband are never satisfied and go through life as miserable demanding nutjobs.

Don said...

Thanks for this Dr Grumpy

As a side note, I really have beefs with NPOs like the AHA and the ACS that run ads saying "our disease kills x,xxx million people per year, your donation will help us make sure these people won't die anymore"

I am all for research that helps people live full meaningful lives, but at some point, we are all going to die of something.

Frankly, I don't want to die at 120 if I have to spend my last 50 years as a frail old man.

Bette said...

Well written, Dr. Grumpy. I never wonder why you are 'grumpy', knowing how many you see like this family.

Anonymous said...

Were it not for the adamancy of a good friend who defended me while comatose, today I would have been dead for 2 years.
I try each and every day to repay the blessing of continuing with my life.
That said I can't help but agree, sooner or later we all have to move along. Making the decision is something the individual can do in advance, choosing to define "life" and therefore to define when it is over.

Pvt Jack said...

Well written, Dr G. This needed to be said.

I hope people do realize that this situation happens very often. I see it enough in my small community hospital critical care unit.

This is why I'm tempted to be a DNR at my age (< 40) and why I volunteer at my local hospice organization on the interdisciplinary team as a pharmacist.

Anonymous said...

Having had a family member suffer through end stage cancer, I will add my support to this post. Prolonging their pain is very selfish - it can just be so hard to let go sometimes.

I do understand the slippery slope argument, though, which is why I still feel the Kevorkian comment is inappropriate. Withholding treatment and allowing someone to pass away in drug-induced peace is still different than actively ending a life. What happens when bed shortages continue to get worse and it's decided that the most economic decision would be to speed your demise to free up space for the next patient?

bobbie said...

RIGHT ON!!!!!!!!!!!!!!!

Those types of situations are THE one thing that used to make me angry at work (ICU)... how could anyone be so blind and cruel?!?!?!

I have every type of paperwork possible (legal & lay) stating "DNR no matter what!" ~ and I also have a long list of everything I don't want done, all spelled out explicitly.

And of course, my husband has heard me come home grumbling about this stuff so often, he wouldn't DARE let them code me!

I agree with the person who said this should be required reading in congress ~ I would also add that it should be required reading in med. and nursing schools, and that every PCP should be required to discuss this with their regular patients at the soonest possibility.

And yes, I AM going to have DNR tattooed on my sternum!

Bless you for having the courage to discuss this, Dr. G.

bobbie, RN

Moose said...

Yes, yes, yes.

I'm lucky that I know my family is against prolonging life just because the heart is still beating. My family has seen loved ones suffer as cancer and strokes chewed away, caused unneeded pain and suffering and eventually left empty shells. I know if I'm ever in that kind of state I will be let go.

And I strongly disagree with the later Anonymous but the earlier Anonymous is right. Dr Kevorkian was a hero who only helped people who were aware of what was going on with them and wanted to end their life when they still had a functioning brain and dignity. I don't understand why it should be ok for my family to pull the plug after I've turned into a vegetable but for me to not end my life when the prognosis is clear and the end is coming [and it shall not be a fun party boat]. Let the dying die with dignity, when their loved ones can remember them as they were. Don't force them to wait until they are the shells of what they once were.

rn4heads said...

Bravo Dr. Grumpy! I have to say that I'm glad I work at a hospital that allows family members to be present during "codes" and emergencies. I think it's important for them to see what we do when their loved ones heart stops or they stop breathing. I also believe that living wills are very important, however, people need to make sure their families know their wishes and will abide by them. How many times have we seen families who say they want "everything" done when a Living Will has been written. The health care team is so afraid of lawsuits that the patients wishes are pushed aside.

My living will describes my wishes which I have discussed with my children. However, my health care power of attorney is not a family member. He is a good friend of many years, but also a nurse who has the knowledge to make decisions on my behalf.

Health care needs major reform in many areas. From the drug companies who charge an arm and a leg for meds that cost very little to make, to insurance companies who deny coverage, to legal tort reform, medicare reform. I don't know what all the answers are, but people who are actually involved in health care should be a PART of the decision making process. It should not be left up to these pinhead politicians who recieve money from special interest groups, have money invested for profit in health care products, and who KNOW NOTHING about medicine or what we actually do.

Anonymous said...

So sad, so very common. Most docs and nurses will have a few really touching stories about it yet this subject still seems to stymie a segment of our population. Many of us see it first-hand (with the more reasonable families): a loved one has suffered a catastrophic accident/disease/stroke/cancer/etc. and the primary family members are struggling with either taking the slim chance of an intervention making them better or ‘letting them go’ (i.e. in the words of a wise attending I once had said, ‘before they get too well to not die’). Then the extended family arrives. ‘How could you be so cruel to think of letting them die?!’ ‘What kind of son/daughter/wife/husband are you?’ Etc. Etc. Etc. Then the patient becomes too well to not die and the extended family scatters like cockroaches, leaving the immediate family to deal with the consequences.

It seems like there is a vocal minority of Americans that like to act like this malignant extended family (look no further than Teri Shiavo). As soon as the idea of no longer ‘flogging’ our dying patients is floated they get up in arms about ‘death panels’ and euthanasia. Of course, the irony is that these self-same people are those most vocal about ‘unfair taxation’ and expensive insurance premiums.

IMHO, one of the only things that will change this is tying medical care with personal expense and choice. You want six months of futile ICU care then you should be willing to pay (at least) part of it. Of course, this will only lead to cries of discrimination and classism. Unfortunately, there will be no easy answer.

Mark In Mayenne said...

There's not many people I see in these comments disagreeing with Dr Grumpy, nor do I know any people in my personal life who would disagree either.

So what I want to know is, why aren't the necessary changes happening? Too difficult for politicians to deal with? They get paid well enough to do a difficult job. So do it.

And a big un-flame from here too, just in case you get any.

Kim Wombles said...

Thank you, Dr. Grumpy, and especially to all those who've commented here to share their losses. It wasn't easy reading but it was necessary reading.

The Semi-Domesticated Mama said...

I agree to a certain extent. I'm not a doctor, a nurse or anyone else in the medical field nor do I play one on the internet. But I do have personal experience with this kind of situation.

Three years ago, my dad was dying. He ws diagnosed with Polycystic kidney disease a long time ago and his kidney's slowly shut down. He was on dialysis for 12 years before they decided to remove his dead kidney's. The surgeon, in all his self important narcissism, decided on a laproscopic procedure. He punctured my dad's intestines. He didn't realize it and sewed my dad right back up. Two days later my dad was septic and in bad shape. It got worse, so much worse. He was in ICU for 9 weeks. He had numerous staph infections, pneumonias, peritonitis....the infectious disease team told us many times that he was going to die. Period. They could not save him, he was too sick and too weak to survive the bacteria invading his body. He had tubes everywhere, vent dependant and was non-responsive for weeks. They talked to us numerous times about discontinuing life saving measures.

Fortunately he also had a living will that stated we were not to remove life support. He was very specific. After 6 weeks in such a state, he made improvement. 3 weeks later, he went home. A year to the day later, he had his kidney transplant. Today he is healthier than he has ever been and is enjoying his life.

If he hadn't had the advanced directive, we more than likely would have discontinued his life support. We were given no hope by his doctor's, not even a glimmer of hope. They told us that we were prolonging his pain, his suffering and he was still going to die. I have to live with the thought that if it had been up to me, he probably would not be here today.

So there is a flip side. I understand the situation with the lady you described is different but it's such a fine line. I hope I'm never put in the position of having to decide for someone else whether to end their life or not. Unless it's my mother in law.

My husband and I are both young, in our early thirties, and we both have advanced directives already. Nobody should live with the guilt of a decision that they were ill prepared to have to make.

Anonymous said...

This issue is what makes me second-guess the medical "decisions" I've made regarding my son. And I know there are people out there who meet my son and think, "Why did you do all of that for this child?"

You see, my son has a rare chromosome disorder and HLHS. He is 2 years old and mentally and physically handicapped. He likely will never be independent. He has a G-tube. And our insurance company has spent $500k-plus on his care, so far. He has more open-heart surgery to come in the future, too.

He receives every therapy under the sun. He works hard and is so stubborn, and he's thriving. We love this child very much.

BUT... We knew of his conditions before he was born. We strongly considered comfort-care only. We knew there was a strong chance he would suffer greatly and unnecessarily. We believe in God and Heaven, and while it was heartbreaking, we welcomed the chance to release him to a place where he would know only love and peace. Our worst fear was that he would die like your patient, or on some operating table with his chest wide open. It still is.

The doctors talked us into treating him. They made me feel like a monster for even considering letting him go. I repeat, we LOVE him. But it's precisely because we love him that I wonder if it would have been less selfish to allow him to pass on.

Thank you for writing about this issue. It's true: medical resources are finite and we as a society need to face it. I believe so-called "death panels" would actually be a compassionate solution, and would allow patients like yours to die with some dignity.

Suzanne said...

I'm echoing everyone else:


We plan our lives, why shouldn't we plan our deaths? I'm going out on my terms.

Hell, if I get cancer, I'll fight with every cell in my body. But when the good fight is up, I'm heading to a beach with a bottle of tequila, a lime, some salt, a rocking chair, and sunsets galore. And then to hospice.

Or I'll go like my grandfather - in my sleep.

pharmacy chick said...

Fantastic post Grumpy. Couldn't have written it better myself. Honestly, there will always be a core group of people for whom "standard" care is defined by the rest of us as "extraordinary" measures. I've seen it in my practice where patients with no hope jet from one center to another in hopes for that magic bullet that doesn't exist. We live and then we die. Death is a part of life's natural progression and if disease hastens death, its sad but not preventable. Even prolonging life has its downside if the life being prolonged is just an intubated vegetable. Yes, I have an advanced directive. Like my mother before me, its simple. If I am terminal, keep me comfortable but let me go. Where I am going is a lot better than where I currently am anyway.

bb said...

Excellent post. Medicine is great and our lives have benefited from the advances in medicine but it has come at a price. It is a blessing and can be a curse. Medicine can keep a body alive but it has no way of keeping a person alive (and yes, there's a difference between our body and our person). The lady in your post is trapped because her family won't let her go.

I really don't know what a good answer is to something like this. It's a huge problem but as a lay person with no medical background whatsoever, I have no idea what would be a good solution. Your solution regarding an independent panel of physicians sounds good. What I do know is that the government and insurance companies should NOT EVER have a voice in this aspect of care.

The family you cite, while they would deny it, are doing what they are doing for themselves. They are unable and not ready to let her go so they force her to remain imprisoned in a body kept alive by medical technology. She is a prisoner and her loved ones are her jailers.

My instructions to my family is clear -- do not imprison me in my own body just because you love me. Love me enough to let me go.

Without meaningful quality of life, it's time for me to move on.

palach said...

I agree with everything you've said. I've seen it at work, both in EMS and working at a hospital. I had to make the 'end of life' decision for my mother last year. Her (and my own) horror of anyone ending their life as this poor lady has made it a little easier to choose Hospice and a chance for her to die with dignity. The only thing that amazes me in all this is that insurance companies will continue to pay for these kinds of things. Yet so many people who genuinely need care and could be helped by it are denied. Sigh. I think the only people who believe health care doesn't need reform are either in their pockets or have never really used or been in the system.
By the way, I read you every day. Love you Dr. Grumpy.

Anonymous said...

If I can't sit up and ask you for a cold beer then pull just pull the plug!

Anonymous said...

Take care, Dr. G.

Celeste said...

A similar article with a slightly different perspective is on Bloomberg today:

The author and wife of a man who died of kidney cancer after an exceptional journey writes, "Looking back, memories of my zeal to treat are tinged with sadness. Since I didn’t believe my husband was going to die, I never let us have the chance to say goodbye."

I believe our society misses out on that experience: the opportunity to say good-bye and the wisdom that comes from listening to people who are dying.

Dan said...

I don't disagree with the concept of a panel of disinterested doctors reaching a consensus on the value of continuing care. However, I will point out that the concept relies on rationality and objectivity, and those things are almost never in play when it comes to health care decisions for ourselves and our loved ones. Nobody wants to be the one to authorize pulling the plug, only to have the miracle cure announced the next day. (For that matter, would you want to be a doctor on the panel that made the decision to discontinue care in that situation? Probably not.)

End-of-life care is rarely about the patient. Your doctor panel must be paired with some sort of counseling for the family and friends of the patient to enable them to make the transition from denial and desperation to acceptance and letting go. (I think this is true even in the case of advance directives; there's no preventing a family from challenging a directive in court, or suing doctors after the fact for obeying a directive, if they are clinging hard enough to false hope.)

Anonymous said...

as a fellow physcian who also sees this so often - amen to your post

Anonymous said...

When families make end-of-life decisions at the time of crisis it is often based on emotion. "Do everything" is a mantra, but the family hasn't mentally processed the possibility of death.

When people talk about their inevitable demise ahead of time, logic comes into play. Families can fall back on living wills and advanced directives to remind reluctant parties or family members in denial of what the true wishes are.

If we are mandating health insurance, why don't we mandate a discussion with our medical providers and families about our end-of-life wishes before it becomes necessity?

Watching someone you love die stinks. No way around it. Watching it drag out before it comes to its inevitable end is horrible and painful. Hospice care is not evil or bad. It helps with the physical and emotional pain that death brings for both patient and family.

It is time to bring common sense back into medical care. Exhausting every option for a 94 year old person who has no chance at a return to meaningful life lacks some common sense.

pj said...

Another round of applause for Dr G. and this courageous post.

And yet another echo of all commenters who shout "Advance Directives" and "Healthcare POA" from the rooftops...

And another agreement that an assessment by a disinterested panel of providers would be a useful way to break through these insane roadblocks, these torturous dilemmas.

Somehow, we--our society as a whole--desperately need to have more sane and civilized discourse about our attitudes toward end of life. Without this, the crazy goat-rope the medical professionals all cite here will just go on. And on.

And finally, I too am confounded and disgusted by the husband in Dr G's post, sickened by how he is subjecting a loved one to a protracted agony that makes the suffering of Christ on the cross pale by comparison . . . because he "believes" this is what his god instructs: that he assume the role of said god, and keep her 'alive' in suffering. This kind of thinking makes my brain bleed. And some of the other posts (e.g. kitten) bring tears to the eye... hmmm, yeah, aren't I supposed to be working?

Anonymous said...

I echo everyone else here...

EMS sees it too, Grumpy. I saw it, and I sometimes wish my impulse-control unit would fail and I would tell them how I really feel.

Seriously, if you get flammed even after 70+ comments of support, remember this: they don't see what we see and they don't know what we know.

JTN said...

One of the hardest things I've ever done was to support my mother in law at the end stage of her brain tumor.
She was an RN and knew exactly what was going on. After the drugs inhibiting the growth of the tumor stopped working, she lost the ability to swallow within about 3 days time. She chose to stay hydrated, but to not have any nutritional supplements.
It was very hard to let her essentially starve to death, but she refused to be a science experiment. She wanted heroic measures, but she knew that was fantasy and not reality. After spending her life caring for people whose families refused to remove feeding tubes for people who were not going to recover, I thought her choice was brave and courageous (though she was extremely angry up until the end about the tumor itself).

Katie said...

I see this regularly in my practice, more so lately for some reason. I fully agree with you that once we have reached the point where we are prolonging death rather than life, or doing things to our patients rather than for them it is time to quit. It would be nice to have a review panel to validate that judgement and stop the pain and the waste.

Anonymous said...

Just finished watching a PBS show of a man with Lou Gehrighs disease who went to Switzerland to end his life while he could still swallow in a "death vacation". It was harder to watch than I thought because I while I believe in the right to choose death and not be tortured in the name of "doing all that is possible" death is never easy; even when its expected.
Years ago my father in law ended up in the hospital after months of self treating his supposed IBS when he finally got real medical help they knew from his symptoms and blood work he had cancer but had to open him up to find out it had blanketed all his internal organs on the outside and were shutting them down. Even hearing this from the doctor my MIL wouldn't accept it and was in complete denial to family and friends about his condition. He was in pain and miserable and said, "No one will tell me anything." So I told him that I wouldn't lie to him and ask me anything. He stared at me for over a minute, sparing both of us the actual words and details.
In the nursing home, where my MIL still kept everyone away (no final good byes because "he'll be home soon.") My husband and I were with him as he took his final breath with a feeding tube (to make him comfortable) and IV and the pain of his surgical exploratory wound from his chest to his pubic area.
Months later after his death we found out through a letter that during the time he died a nurse had been "assisting" cases like his and a scandal was going on of loved ones who felt their loved ones "last days were shortened." I listened as my husband assured his mother that wasn't the case, then he got off the phone and said he remembered the nurse and she had given his father a shot within minutes of his death and that it was a blessing. My grandmother worked in nursing homes in the south during 1940-1952 and said during the days of doctor home visits there were patients that got a shot for pain and was found dead the next day. The staff knew it and thought it was a "mercy" for a suffering human being.
Is it any easier to die if you don't have loved ones putting you through torture because they're unable to deal with you being gone?

Jeremiah said...

Sometimes this should apply to doctors too (who dont want their statistics to look bad)

I am an ICU nurse who got reprimanded for actually talking to my patient's family about their loved one's code status by a certain cardiovascular surgeon.

This talk actually came after this patient already coded on the last shift, and actually looked like death on a cracker (similiar to the picture Dr. Grumpy described above). Plus the family was in agreement that if their loved one couldnt walk and do her normal stuff, she wouldnt want to live like this for the remainder of her life. Plus we were only talking code status...and not withdrawling care (since I had a feeling we would be coding this pt real soon)

Once this doctor found this out, he was so furious that he had to leave the room (so he wouldnt hit me)...and I was the one who got in trouble by the hospital (verbal reprimand that nurses shouldnt discuss end of life issues...which is totally not true!). I didnt really care about the reprimand, since I knew it was the right thing to do in that situation, but it still came as quite a shock.

Note: the patient finally did pass 4 hours after this talk, but not without suffering some more at the expense of a doctor who didnt want to have this death on his statistics.

Thanks for the wonderful post Dr. Grumpy. I totally agree 100% with your assessment!

God bless,

Hal Dall, MD said...

"And yes, I AM going to have DNR tattooed on my sternum!"

Don't forget DNI on your soft palate!

Thank you Dr Grumpy for this post.
The first 4 lines say it all.

Anonymous said...

Wow - a lot of great comments! Tears to my eyes on this post. Seen it from both sides - medical and family. Very well angled and written Dr.G.
One thing that must be said to all is the old mantra - Live everyday to the full so there will be no doubt in the end - where ever you are - that in death there will be as much celebration of life that there is in a new birth.
Mum/Mom in New Zealand.

Anonymous said...

A blogger and a post with some balls. Absolutely brilliant.

Anonymous said...

Such an interesting discussion. I can't help but think after reading this post and responses that what has been widely brayed in the popular press is NOT the majority of opinion. Maybe this observation is statistically skewed because most of us that regularly 'tune in' to Dr. G. are empathetic healthcare providers or empathetic human beings.

bean said...

Great post!

Just wanted to comment on the idea that people have the illusion of control because they can "change their insurer." Yes, it is an illusion -- a very dangerous one that far too many people have. How many people can realistically just "change their insurer?" I can't. My employer provides me with insurance. If I were to choose to change, that would be coming out of my pocket entirely -- and I sure as hell can't afford that. And my employer is not going to change just because they do or don't do something that I don't like. And I would argue that the vast majority of Americans are really in that situation -- not much of a choice, really.

Anonymous said...

I'm guessing that the majority of people who read this blog are reading it because they are either in the health field, planning on joining the health field, have a health problem, or know someone with a health problem.

The people reading this blog do not represent the majority of people in the nation. The people this post is aimed at are the very people who will never read it. Not only are they the people that will never read it, but they are the people who would never understand it even if they did happen to read it.

We're told that it's always about money. People believe that the rich get better treatment than the poor and to some extent that's perfectly true.

People don't want to believe that there is no hope. People want that miracle that they heard about. Remember that guy who woke up after almost 2 decades and is now communicating via a computer and his nurse? That story was front page news everywhere. The subsequent story that told us there was no way that this man was aware of his surroundings was not. That story wasn't going to bring readers in. Even if it had been front page news, people would have ignored it. They don't want to hear it.

I'm in the Bay Area in California. Can you guess what the stories have been around here lately? There are actually people freaking out believing that the "Big One" (Earthquake) is on the way. It's been on the way for over 100 years, but people are trying to prepare for it.

Disaster sells, miracles sell. A life without the absence of hope is not a life that most people want to live.

Imagine being the person to give the OK to stop treatment on your loved one when you never knew what they really wanted. What if the cure came just weeks after the loved ones death? How could they ever forgive themselves when they know how much their loved one loved life?

Rational thinking rarely comes into play when dealing with death. Quite frankly, I'm not sure that it should.

Life is often so incredibly painful. Suffering is to be expected. Giving up is simply not done. "I made it, I lived through it, I'm a fighter," the person who is laying there once said. Now you want the family of them to let them die?

I want to make it clear that I 100% agree with you, Dr. G., but I do understand where these people are coming from. I'm sure you do as well. I truly wish there were more people like you in the world.

Grumpy, M.D. said...

I agree most people who should read this don't read my blog.

Forward this post to as many people as you want to if you feel that will help.

People need to understand this. Death, in one way or another, inevitably effects all of us.

belovedparrot said...

I've never understood why no one thinks twice about the mercy given to suffering animals that are euthanized, but allowing a human to control their own death is considered a crime.

Marco said...

Like the others, I say kudos to you for this post. I agree with all the things you said.

Putting some skin the in the game may be the only way for this family to see the futility and be responsible for it. Most people like them believe in "Do everything possible (as long as I'm not paying out of pocket for it)." Perhaps what the insurance companies need to do is to define and clearly communicate guidelines of when they will no longer provide coverage, e.g. after 5 docs say 'this is futile.' I suspect this family would be likkety-split quick to let her go as it soon as THEY start getting billed for 1.5M...

Outrider said...

What no one wants to say about healthcare costs is that most people should expect to pay more in premiums and taxes than they'll ever use. This is actually optimal since those who use more than their "fair share" will do do because they're as sick as this poor woman.

Shudder. Veterinary medicine has many faults, but this is one reason I never seriously considering human medical school.

Anonymous said...

I've unfortunately seen this in children with terminal cancer. These parents drag their child across the country, going from hospital to hospital, tormenting their child with futile treatments and unnecessary procedures. When death eventually comes, it's a blessing.

RP said...

Thank you for this post. Perfect. I'm an ICU/CCU RN and I have seen my share of family's that don't grasp the reality of certain situations with their loved ones or refuse to. I hope you don't mind, but I copied this and gave you credit on my own blog, where of course you are listed on my blog roll.

Thanks again for saying what alot of us want to say or shake into our family's for what they are really doing in the long run to their loved ones.

Anonymous said...

agree w/you dr g. living will, living will, living will. a hospital "futile care" policy helps, too. where providers and families disagree, ours runs through a cascade of staff, social services, clergy, second opinions and consultations. it works. only a very rare case makes it to the ethics board. and there are endpoints that allow withdrawal of care or transfer of care.

Jen said...

It is my belief that this is a huge reason why health care in the U.S. is so expensive. At some point we do have to accept that a part of life is death and let go of our loved ones.

Filet-o-bitch RPh said...

Wow! Total eye opener. Thank you! Yeah-if I get terminal cancer, sign me up for one of those 6 month cruises around the world or a one way ticket to Amsterdam.

Anonymous said...

I have a fatal illness. This would be a nightmare for me. I have been very clear with everyone what I want and being on a ventilator is not living. Let me go. Remember me how I was.

Anonymous said...

I wish people would TALK about death. I have had an interesting experience with this. I am lucky in that I live across the street from my parents. They help with my kids and are a very big part of our lives.

A couple of years ago, they went to an estate planner to update their will and (they are in their early 60's) complete their living wills. They had fairly extensive discussions with us about the fact that they DID NOT want to spend their last days hooked up to a variety of tubes.

It's funny, because they are not necessarily "the type" you would expect to do this. I think that when given the opportunity, almost everyone would opt to make these decisions for themselves.

When our neighbor recently died of Cancer, they were the absolute best at explaining it to my kids, even saying that someday, they would become angels too, but that would be ok w/them...everyone dies eventually. I think that when the time comes...hopefully, not too soon...these discussions will be remembered as tremendous gifts to us all!

Thanks so much for the post.

Anonymous said...

Dr. G,

Well said! I'm a hospital chaplain and I see this a lot too. It's my job to help the family understand that the "miracle" might not be their loved one living...but might be getting to spend a few more pain free days with her or even letting her go. I also help people write living wills etc., and am constantly explaining "what that choice looks like" when they say they want more treatment. Makes me crazy sometimes, and I feel bad when I can't make them understand, because I know it can come down to this situation. Where everyone is suffering for this poor woman.


memune said...

Thanks, Grumpy.

As with many others above, this makes my own experiences resonate. My mom died 15 yrs ago (pancreatic CA) comfortably, at home, in no pain, with her loved ones around her. She tried chemo and it worked for awhile; when it stopped, her doctor (he must've been a classmate of yours) outlined her options, and she chose hospice. She died 6 wks later. If there is any such thing as a good death, hers was.

You can sum up much of the problems with health care/health insurance thus: "Death is not a curable condition."

It can't be said too often: Living will. Advance directive. Medical POA. But it also can't be said too much that "Denial ain't just a river in Egypt."

Cate said...

Excellent post- my parents have both made it extremely clear they don't want my brother and I to do this to them... I think it's a shame when people put their unwillingness to accept their loved one's coming death above what is best for the patient.
I wish I could say that I think cases like this will eventually end, but I think that it's human nature to try and do every last thing to save someone you love no matter the cost- but maybe if it were the family bearing the burden the outcome would be different.

bobbie said...

Hal Dall, MD ~ thanks for the great idea!! The discomfort of the soft palate tattoo would be well worth it to avoid an intubation!!!

Dr. Grumpy ~ I think I love you. Will you be my doctor???

nRT said...

Every parent should save this post and share it with their kids. End of life wishes should be talked about well before the crisis begins. It is heart wrenching to see a family struggle with the "what if's".
All of your readers should cut copy and paste this post and send it to their loved ones. No one want to live on machines.
thanks for saying what we all think.

dan said...

I went through a similar situation the past two years with my mom. She had cancer which slowly advanced and marched all over her lungs and right up to her brain. 57 years old, she had the whole regimen you mentioned - chemo, radiation, pills, this, that and whatever may have helped. She had always said she did not wish to be on a ventilator or any machines. Last month she went in the hospital and it was clear the end was just days away. The month or two leading up this point we could see there was a difference with her memory as the tumor there began to push hard on her brain, impacting her ability to remember what she said just seconds ago. The two days before her death she was on a breathing tube which went down her throat but she would awake and pull the tube out, saying she did not want this. Her lung had collapsed and the other was working at two-thirds capacity. There was not anything that could help here except being on a breathing machine. She did not want it and we stood by her with that decision. Two days off the oxygen and she slowly drifted towards death, occasionally coming to between IV pain meds to nod in reply to people's questions to her, and even reaching out to hug visitors. It broke everyone's hearts to see her going from us after her courageous two year battle but we - and most importantly her - knew this was her time. We did not want her to be laying in a hospital bed with tubes in her arms and tubes down her throat nothing but a body with no mind. The essence of life is experience and she lived a lot. She was in the hospital a lot of that two years she had cancer but always kept busy while in. It was the toughest thing to do I had to do, watch my mom die but it's something we let happen, because there was not a thing we could do at this point to change the course of life.

I had just got off the phone with my sister and we were talking about that last day in the hospital. She had said the doctors informed her that my mom would have had to stay in the hospital and would not have been able to go home, and this was the best case scenario. We would have accepted that and she would have too so long as she could talk to people or at least communicate to experience life. My sister rationalized letting her go as the best thing to do as being in a coma is no way for her, let alone anyone we care about, to go on.

Bibliotekaren said...

Well, it looks like I'm a wee bit late to the party. However, here's one more voice for Advanced Health Care Directives AND creating one before you get ill. It was quite disconcerting to be doing mine prior to my craniotomy...I'd almost meant to do one but...

KimberlyK in OK said...

Just had to add my 2 cents so you'd break a hundred comments! Go Dr. G! You hit the nail perfectly and in good taste. Very well said!

MsLaurie said...

Well said Dr Grumpy.

Regardless of the cost in terms of money, I can't help but feel the real cost in these cases is the fact that the person in denial loses the one gift of a long death - the time to say goodbye.

terri c said...

Wonderful post Dr. Grumpy. As a hospice chaplain I do see things like this... and there are all kinds of reasons why families make choices like this. Sometimes people have misunderstandings of religious teachings that lead them to feel they have no choice but to say "Do everything." Sometimes old family conflicts come into play. I did see one family who opted for a small bowel resection for a parent with dementia and many other serious health problems, because the parent had not made out a will and there was property to be divided! The hospital where I occasionally work shifts has an ethics committee that can be convened and that represents many disciplines; that committee can make a decision re: futile care, but as you say nothing keeps the family from moving the patient to a different hospital. I don't know if an ethics committee decision is reported to the patient's insurance, though.

Anonymous said...

As an ICU nurse I totally agree and i have seen this many times and its even more of a disaster when you have to code these poor people. I am also upset there are not more laws protecting living wills. I cant tell you the number of times a family member has over ridden a DNR/DNI or very specefic living will. Only to end up in court and the person suffers and dies anyway. If I am a DNR just because you are my child and now legally my POA why can you change my wishes? its not right but happens all the time and needs to stop.

River said...

Reading this post has reinforced my thinking that I've done the right thing by telling my children that I'm not to be kept on life support for any longer than it takes for all the kids to gather and say goodbye. I don't want to suffer,(if I'm on life support I'm probably brain dead and won't be knowing it anyway), I don't want them suffer through having to visit me knowing there will be no change ever, I don't want them to suffer financially unnecessarily. They all know my views on this and they've all agreed to let me go if this becomes necessary.

Ianto Jones said...

For the most part, I agree very strongly with the sentiments you have expressed in this post. what gives me pause, and it's something that has been discussed at great length above, and of course for many years and decades and even in such books as the "The Nazi Doctors" , is the idea of who determines what constitutes valid quality of life. The situation you describe seems clear-cut to me,to you, and uncertain to the majority of your audience. However, I would like to present a different scenario for your consideration. Hypothetically let's say I am a 36-year-old post polio patient who is paraplegic, ventilator dependent, and therefore requires the services of a minimum wage personal care attendant 24/7, and will continue to require a ventilator for the rest of my life. Many doctors will say that simply because of the ventilator, my quality of life is by definition insufficient, and/or my life expectancy is therefore very low. However, for myself I can make the determination that I have full cognitive function and access to a computer and therefore access to both intellectual stimulation and social interaction. So my quality of life and ability to contribute are quite high, and therefore my desire to live is also quite high. This is not compatible with a medical determination by definition, one for one, anyone who is restricted to a ventilator has no quality of life and is by definition terminal. Which is an opinion that I have heard and read on any number of occasions on the Internet. I really cannot tell you how many times I read that as a blanket statement and it's the one that I can't get past when this basic overarching conversation comes up. I completely understand that this isn't the point that you are trying to make, and again I actually do entirely agree with argument and the point that you are making, however I have absolutely no comfort level and no confidence in our culture and society's ability to get to the point where we can exercise needs to happen for what you are describing without sacrificing what I'm talking about even though I am causing no additional burden because I pay for my PCA out of funds that would already be spent. I'm sorry that this pose isn't better organized or more concise, but I wanted to get these thoughts out before I lost the thread of them. Thank you for bearing with me. Please feel free to contact me via response to this post if I've caused any offense or concern; this is something I feel very strongly about. Thank you.

Anonymous said...

My Dad and my friends Dad were both diagnosed with cancer at the same time. My dad did raidotherapy and kept fighting it till he died less than 6 weeks after dx. My friends Dad died just a couple of weeks ago, 18 months after mine. How can you bear to see smomeone suffer so much for so long. How many operations need you put them through for the same end result.
Yes they had more time together but at what cost? We had less time but at a greater quality, It was only the last 5 days that were very hard to bear and we were greatful when the fight was over. I cant imagine going thru all that futile treatment for so long. If it were an animal they would have been charged for cruelty.
I have a severley disabled brother who was not supposed to last past 8yrs, hes in his 40s he has been in icu so many times and has fought to live, but the last time he said he could not do that again, he got no more fight left so to let him go. If i get a terminal illness or am injured beyond rehab to former quality of life then i dont want to know, i understand that its down to the doctors to inform the family, so i would want to be sure that they and ultimatley i would not be given a life/death sentance of ending up in a veg state. I think your panels are a very good idea. Ive no idea what is avail in uk. Think i would go down dignitas route.

Mooselet said...

My I add my two cents and say I agree with you. As an RN, I will never forget how I felt when we had to code a 90++ year old woman with every co-morbidity imaginable (minus cancer) and I took over chest compressions. I could feel her sternum cracking under my hand and wondered how much more pain we were causing her by forcing her to remain alive. I wasn't nursing, I was torturing at the behest of her family who wouldn't accept she was trying to die. We did manage to get her to ICU, where she coded several more times before finally dying. That was over 10 years ago and I remember every second of it, and it still makes me ill. I refuse to put my family or fellow nurses through that when it's my time.

Anonymous said...

I agree with you so much. I am a cancer patient - I've taken all of the normal treatment and during that time I fought, and fought to stay alive. The key is, I had a fighting chance. I am alive and well today. BUT, if my cancer spreads and it is futile to treat me, I want to live out the last of my days, weeks, months by LIVING and not like this. I want to die in as much peace as possible and not be carted from life support at one hospital to life support at another hospital. Everyone should have an Advance Directive specifying their own wishes but even in some cases those wishes may be too much - insurance shouldn't pay for those that want a ridiculous amount of life support.

Mayflye said...

I agree with Jeremiah and the other ICU nurses. ICU nurses see it every day; and a TEAM should decide because I know too many doctors (especially surgeons and pulmonologists) who give false and unrealistic hope to the families. I have seen DNR's rescinded that were requested by patients and families. The nurses are at the bedside with our arms up to the elbows in pressure ulcers and cleaning up people who can do nothing but lay in bed and shit on themselves. We see the patients moan in pain, and see the abg's drawn, the central lines placed, the million painful tests and procedures. The doctors don't and the families don't. Yet we are told not to discuss code status with patients and families. Thanks for the post; and the other great posts that make my day. Glad I'm not alone in the trenches.

Anonymous said...

Thank you for writing this. I am fortunate in that I just had a discussion with my parents and they have made their wishes very clear to me, my siblings, and have established living wills. I find so much peace in knowing that if I am ever in a position to make a decision in regard to their medical care I know what their wishes are - basically no life support. People need to talk about this and let their families know what they want!!! I feel that so many people are afraid to even talk about situations such as this and it results in prolonged suffering - both on the patient's part and the famly's.
Thank you for brining some common sense and perspective to this important matter.

Justin said...

I agree that people should be allowed to die with as much dignity as is possible, and should not be made to suffer needlessly. My family followed the wishes of my Grandpa and he died at home, as comfortable as he could be with cancer, and surronded by family. I hope for as much when my time is up.

I do have to say that I am vehemently opposed to any panel that would decide my fate for me unless they are impartial. Someone paid by the company that is looking out fir a bottom line, whether it is a private insurer or the government would never look out for the patient first.

I do like Dr Grumpy's impartial group of doctors though. I just don't want anyone that may gain from ceasing treatments to have a say.

Anonymous said...

You didn't note whether or not the patient had an advance directive. Was the husband her health care agent and only following her wishes? Was he acting against them? Was there no advance directive? I agree much of the "death panel" talk has been overblown, but the point is valid: You should have the say, not the government, over your own end of life care. Making your wishes known and putting them in writing helps everyone when serious illness and death are near. For an easy to understand advance directive that meets the legal requirements of 42 states, go to and check out "Five Wishes."

bean said...

ianto -- since you would have full cognitive abilities, you would be able to make any decisions regarding your health. I don't think there has EVER been any suggestion -- by anyone (government, health care change advocates, Dr. Grumpy) that there would be any change to that. The only change would be if the person were not able to make these decisions for themself.

Anonymous said...

Mousie here. A dear friend posted a link to here along with comments. Good comments. I lost my mother, aunt, and father-in-law to different illnesses. All long and drawn out. For the most part everyone in the family was in agreement about it and they passed on without tubes and such. As I write this my dad is in surgery. A cancerous lump is in the tube that connects the kidneys to the bladder. So I've been thinking this whole day about what ifs. Thank you. For being brave and strong enough to be a healer and for knowing that sometimes you can't heal. Thank you for helping with words and deeds. You have a good idea about the panel and this post is wonderful. Thank you.

Unknown said...

We treat our pets with more compassion in this instance. After all, no-one disagrees that at times it's kinder to put a suffering animal out of it's misery. [I have a rant about vets who are a bit too keen, but that's another story].

I for one would hope for the same standard of care as my pets.

Anonymous said...

I have said this before and I will say it again...if you treated your pet like this you would be accused of being inhumane. How is it that we can treat humans like this, yet it is unthinkable to watch an animal suffer when when they can be 'put down'.
I had an aunt from the Netherlands. She suffered from cancer for many years. When it became too much, too much pain, too many drugs, and no quality of life, she was able to set a date and end her life with dignity and on her terms. She was surrounded by her husband and family. Can anyone ask for more than that?

Anonymous said...

Hmmmm. It's too bad that the original post had to be all balled up with Killer Kevorkian and Terri Schiavo (2 very different cases).

As a Catholic, food and water are considered ordinary (required) care even if medically assisted--so Terri Schiavo would be alive and her murder would never have happened and perhaps her parents would have been able to care for her as they wished. Wow! How awful is that????

Kevorkian is a murderer and has served jail time for such a crime.

This woman in the original post, however, was trying to die but was subject to her husband's wishes. As much as you "healthcare workers" keep harping that this happens all the time, I have a hard time believing it. I don't see hospitals crammed with people being given every possible test under the sun in these circumstances. It is an exaggeration on your part.

MDKauffman: is it really so hard to administer antibiotics to a woman with a UTI? Where's your compassion you idiot? UTI's don't have to be a dying persons disease--you just don't like old people. Get a new profession.

You've all lost your heart! How cold and hard have you gotten???? I am convinced now that NO ONE should be making these decisions (and especially not you people) for a family except the family. Thank you for clearing that up for me and making me thoroughly distrust the medical establishment.

--Flaming Lisa

Anonymous said...

Excellent post Dr Grumpy, I agree with you 1 million percent--thank you for saying what needs to be said!!!

Too bad I am following the first flamer Flaming Lisa--obviously she doesn't know anyone in the medical profession. I cannot even believe she wrote that after SOOOOO many have validated what you see time and time again. How can she be so "cold and hard" to this?

Anonymous said...

I agree that no one's suffering should be prolonged when there is no hope of recovery.

However, I'd like to know what "disinterested" means. Doctors are human. Humans are rarely, if ever, entirely disinterested. Financial interests (however minor), politic leanings, religious ideology, even simple gut feelings or tendencies to be optimistic or negative... all of these things create some degree of bias.

Kristyn, RN said...

Well said!
In our ICU, we joke about it (to relieve stress, I suppose): "Come to the ICU, we'll put a hose in every hole you have and then make some more holes and put some hoses in there too!" This is exactly why I'm leaving critical care - I'm tired of torturing dead bodies.

As far as living wills, etc., they're a bunch of crap if you ask me. It won't do you any good to put it on paper if the people who make decisions for you won't bring us that document. I see them brought in all the time, AFTER the hoses are in all the holes and the surgeries have been done and the seizures or neuro temps or ARDS or whatever has set in. Oh, Grandpa said he never wanted us to do any of this? Thanks for finally letting us know. Glad we spent all those resources and all that time torturing him, are you ready to stop being selfish yet?

Thanks for saying it Grumpy! If more people would just realize that death is inevitable and OKAY, maybe the healthcare system couldn't be quite so crumping.

RehabNurse said...

Dr. Grumpy:

Great article...and thanks for your comment on my blog.

I have to agree with danielle. No, we had a family that didn't agree that their 90something year old parent would suffer if we did intubate him and not do CPR (he'd be suffering with that, too, as we cracked all his ribs.) Thankfully, we never got the chance to code him. He d/c'd elsewhere.

People get so attached to people for the wrong reasons, and they view their personal needs above the dying person.

You almost want to throttle them and say, "This isn't about you. It's about him or her. What did they tell you to do?"

Many know, they just don't want to have to make the choice and be the bad guy/gal.

Anonymous said...

agree with you Dr. Grumpy, I'm a health care provider in long term care & I see clearly, daily, that family members make decisions to protect themselves from loss and pain, even going so far as secreting and hiding DNR's and Advanced Directives from 95 year old mom is subjected to invasive, sometimes painful interventions she never wanted. It is a travesty.

Michelle. said...

You rock, Dr G!

Diane said...

This is why people should write out specifically what they do/don't want done to them - an advance directive I think it's called. I can see food and water tubes, but when it comes to all this, and it's futile,just let me off ventilator, keep in food/water,and let me breathe my last (if I can) and if I can't, then it's too darn late. I'd rather stay at home and die than be stuffed in a hospital hooked up to many machines. Took care of my father-in-law at his house when he was dying of cancer until the last.

Anonymous said...

Wow! I missed a few days of your blog this week.

Thanks for saying what you said. I, too, have seen this sort of scenario play out in my practice. One of the questions I always like to bring up, can we do this? The answer is almost always yes. The more important question often is, should we do this?

I get the concept of "let's give this a few days/weeks and see if a corner is turned." If/when it doesn't, things can get pretty sticky.

I also appreciated the chaplain's comments that often the miracle may be a few pain free days for the patient and whole heartedly agree that stopping aggressive care may be the most courageous decisions a family can make.

Dr. Mongo Lloyd said...

Flaming Lisa, there is a difference between living and being alive. Terry Schiavo hadn't been alive for a long time; she was simply living with the assistance of machines. The only part of Terry Schiavo that was "murdered" was her religious wackos who seem to think that a persistent vegetative state is part of "Gawd's plan."

Anonymous said...

Dr. Grumpy,

I am in total agreement with your assessment, and if I beleived most doctors were like the one you play on the internet, I would be more than willing to designate my life to a so-called panel.

Unfortunately, my experience, and the news often reminds me that this is not always the case. In a way, I see this end-of-life debate as an outside issue, only for those people with enough income, family and insurance to reach this point.

As someone who lives near the designated povery-level, (I refuse to say impoverished, when my essentail needs are met) I am currently blessed to have found caring, capable medical staff, but before this, my experience with 'medicine' was medeocre- at best - and outright damaging -at worst, mixed with a helplessness in knowing I had no other options.

The more I work with my current team, the more horrifying my past experiences become, and I know I'm not alone in this.

As long as I hear stories of the disproportiante number of low-income elderly and children being medicaited for being 'difficult', and as long as treatments aren't being tried due to opinions on a persons ability based on socio-economic status or perceived ability to contribute in life...

As long as I hear these stories & experience some myself, there is no way I could carte blanche sign the decision of my life & suffering to another human being, let alone,'panel'.

myoclonicjerk said...

I agree whole-heartedly.

knittinnurse said...

I totally agree with you. I've seen way too many people believe that a miracle will happen. I've also seen almost every person in this situation on Medicare/Medicaid and therefore the family never will pay a cent for this-we the taxpayers do. I am a Catholic and am well aware of miracles and keeping people hydrated and fed while dying.We don't need to attach people to vents, hemo, every possible med out there to keep them alive. A miracle will happen if God wills it, not by torturing the body. My fellow nurses and I believe that if you must be kept alive with dialysis, drugs and vents, that's not living and after 1 week, the burden should be placed on families physically and financially-the same families that leave the room when their loved one needs suctioned, has had a loose stool that now requires a drsg change to their coccyx wound-demand they do it all including pulling up the pt every 10 minutes.
Doubt they would do anything. Oh and don't allow them to readmitted to the hospital after they are in that position-make them care for them at home, by themselves. It was done 100 years ago and it can be done now.

Nicki said...

I am living with this right now. My husband has pancreatic cancer. We both have living wills, which I instigated, but when we got the news that the cancer was too advanced I sat him down and asked "What do you want?". Contrary to our living wills he wants to be given every chance/treatment UNLESS there's no realistic chance of him being released from hospital to live at home for a reasonable length of time.

That's what he wants and that's what I will insist upon for him.
I demand that the doctors are honest with us, that they give us all the information so that we can make an informed and rational decision about treatments offered. We have already turned down one clinical trial because it wasn't right for my husband. In short, it's about quality, not quantity.

Anonymous said...

I'm a bit late commenting on this. But this was unbelievably enlightening. It gives me so many more issues (and an interesting perspective) to think about when I start med school in a few months. Thanks Dr. Grumpy.

Anonymous said...

@Dr. Mongo Lloyd

So you think Terri Schiavo should have been murdered as she was? Well, she wasn't on any machine as you say, she had a feeding tube because her asshole murdering husband wouldn't get her the rehab she needed to learn to swallow again (and he had the money to put toward her rehab from a lawsuit--that was supposed to go directly for her) he had her illegally in a hospice when she was not dying and was not going to die in the 6months time allotted BY LAW to be in hospice (she was there YEARS). You don't know anything about this case except that you wouldn't want to be bothered caring for someone in her state. But that's because you're a pathetically selfish human being who should NOT have access to patients. So much for your poorly interpreted Hippocratic Oath. You should be ashamed and take the Dr. title away. You are unworthy.

--Flaming Lisa

Anonymous said...

I think you're preaching to the choir, Dr. Grumpy. You need to expand your circle a little bit.

--Flaming Lisa

Anonymous said...

I just started reading your blog, & have never posted, but as an ER RN & former ICU RN I have to say THANK-YOU for posting this!!!! I believe anyone going into a major surgery should have to watch a video showing how you put in all those lines, RN's wiping your privates at 3 in the morning, showing a ventilated-trached-tube feeding patient who's family only visits on Sunday afternoon while they are stuck there 24-7. How many people would change code status or get a living will? I bet most would! Have seen this DAILY in the ED & ICU. It happens, & it sucks for the poor patient involved! Thank-you Dr. Grumpy!!!!

L said...

You guys make your points well and offer something to think about. I respect what you do, and it must be so frustrating to see situations like this.

That said:

1. I do not believe in disinterested doctors. They'd be appointed by someone political, and besides, everyone has personal beliefs and biases. (Just look at the Supreme Court.)

2. Two extremes are presented here: dragging practically dead people from hospital to hospital, and handing life-and-death decisions to the government (disinterested panel or not). It's as if there are no options between. But here is one idea: Respectfully, the medical establishment needs to learn to speak up, much like you are here except out in the real world. Minimedic says, "they don't see what we see and they don't know what we know." But is that "their" fault? We see miracles in the media; we rarely see cases like the one Dr. Grumpy describes. Instead of deciding the only solution is to take decisions out of our hands, consider giving us a little respect. We can learn.

3. Some of you are attacking people for being "ignorant" and disagreeing with you. Yet you display the same disgust for them -- a lack of interest in learning about their point of view and instead an interest in lumping all naysayers into groups you can disparage. You say things like:

"Yeah, I'm sure you Sarah Palin fans will accuse me of putting a price on human life."

"... religious wackos who seem to think that a persistent vegetative state is part of 'Gawd's plan.'"

You guys have voiced your own opinions about what you'd want done for yourselves. Since you mostly agree, a couple of comments suggest, you guys must be in the vast majority. But, as you say, anecdotal experience does not equal proof. There are people outside your bubble who also have intelligence, rational thoughts and strongly held beliefs.

4. As Dr. Grumpy says, this is a slippery slope. There are many things to consider. I won't get into them here, but if the debate crops up elsewhere, where there are more varied opinions, I'd suggest considering the idea that not everyone who disagrees with you is a nut job. Some may be irrational and uninformed, as are some people on your side. But not all.

Thanks for starting the discussion, Dr. Grumpy.

student dr. blaze said...

I hope, wherever you are, that you're on the volunteer faculty at the local medical school and offer to give the lecture on medical ethics. Future medical professionals, in particular, need to hear your words of wisdom.

And, I must say, I agree 100%.

How do I recommend you for surgeon general?

Anonymous said...

It's true that this family (and others like them) shouldn't put their loved one through all of this suffering and torture.
But that doesn't mean that panels of medical, ethical, and legal experts should convene to take the decision about continuing treatment away from the family.
It is also true that resources are limited while suffering is infinite. If no one (the family, insurance companies, or a wealthy benefactor) can/ will pay for all of the futile treatments provided to patients like this, then the treatments should not be provided.
We're all going to die. It's simply a matter of how and when. Feed, hydrate, bathe, and comfort this suffering woman. And let nature take its course.

Me in a nutshell: said...

Thank you Dr Grumpy.

Death of a loved one is hard and sucks (my dad passed away a year and a half ago), but it's the way nature is. You just take one day at a time, and eventually the pain lessens, but the memories never die.

And wouldn't good memories be better to have than ones of them suffering?

aerie said...

More people need to read!
Submitted to Digg!

Anonymous said...

Thanks for posting this. It's something I've seen friends of mine do to family members and it horrifies me. I'm single, have a directive specifying exactly what I want done/not done if I end up in a hospital at the end of my life. As for the so called death panels I think that ALL people need to be talked to frankly by their doctors and to talk frankly with their own families. My daughter knows exactly what few measures I want taken for me if I'm unconscious/incompetent and my own personal answer is not very much. To much money is involved in maintaining people who realistically have no hope of a viable recovery. There is no benefit to the patient in such cases and also no benefit to anyone except possible the family who delude themselves.

Anonymous said...

I am just happy that someone is finally saying this. My mother has a DNR in place and has a friend with durable medical power of attorney to ensure she isn't left in a vegetative state. My husband and I are clear on what we want: let us die when our bodies say it's time.

Rogue Medic said...

Thank you for writing this.

It is unfortunate that some have made this a political issue, rather than a patient care issue.

Anna Q said...

I watched them do this to my grandmother. Despite our pleas, my grandfather and the doctors kept sending her for chemo even though she was dying. On her "good days" they'd send her for more poison. She finally had peace 2 years ago. We were sad to see her go, and miss her terribly, but relieved that she is no longer in pain.

Eileen said...

Rather late coming to the party but: I'm amazed that you got 140+ comments with no-one calling for your blood (and the dissenting ones were all from one person who is not fully informed). I would suspect, too, that s/he had a conscience about something, it was too near to home.

It is always a thing of wonder to me that people who profess such a belief in a wonderful heaven won't let their loved ones go to it but prefer to imprison them ina living hell.

Let's face it: if you didn't break a rib or two in a code you didn't do the compressions correctly. Broken ribs HURT, especially every time you have to be moved by someone else. But that aside, death is incurable and inevitable at some point - except too much TV drama shows the arrested patient sitting up and smiling 20 mins after the code. A result like that is like hen's teeth.

Too many doctors come out of med school believing they are god and that they will be able to do it all. They are not taught how to accept and advocate the death process where it is necessary and so they believe they have failed when a patient dies - the nurses who walk alongside that patient have a far more realistic and compassionate outlook.

Nothing will deal with the patient in denial though - my brother-in-law would not accept that he had entered into the death process. He wouldn't talk about things in which he knew he would have no part - he knew he was dying in that sense - but insisted his children should not be told. They were in their late 20s! They believed he still had months to live until I spoke to the son. After his death, at the funeral, the son and daughter asked my daughters when they had known he was dying - and were so angry at the response of "9 months ago". It was a huge untreatable (slow-growing) lung tumour that was mixed up with the lungs so surgery was also not an option. From the outset it could only be palliative care but he seemed to have a desire to torture himself and eveyone else. He refused the care of the hospice staff because he didn't understand that hospice in Britain is not only for death but also to aid with living with a terminal diagnosis. For everyone. It was a salutory lesson to all the onlookers as how NOT to die.

It's so complex - yet also so simple. But more power to you Dr G for a fantastic post - and for the comprehension and compassion of your readers. I'm still amazed.

theresadaugherty said...

So sad to see and hear what others have been through.I'm going to tell you about my experience,from the other side of the bed.Six years ago I was admitted to the local hospital with PCP,sepsis and a staph infection.No I didn't know I had HIV let alone AIDS.My Dr at the time kept telling me I had the flu.Until the night I started hallucinating and called my Dad to take me to the hospital.He came,took one look at me and called an ambulance.I passed out in the ambulance and the next time I knew anything three months had passed by.The Dr at the hospital told my Dad it would be a miracle if I live til morning,but he had them do everything they could.My family was called to the hospital a few times because they thought I was going to die.But they,like the family's you all mention insisted that the Dr's do everything to save me.I had been put on a vent,given a feeding tube,two chest tubes and a greenfield filter.During that 3 month coma and despite the morphine and ativan drip they kept me on I remember feeling PAIN lots of PAIN and horrible dreams/nightmares I don't know what you would call them but they were so vivid that six years later I can still remember them,and "screaming" in pain.I know you can't really scream on a vent but it seemed so real.I would be begging for pain meds in my head.
When I finally started to come out of it I was transferred to a bigger hospital that had a vent rehab unit.the first thing they did was to stop all my morphine and ativan.I the time I didn't know what I had been on so didn't understand what was wrong with me.Yeah I got to go through withdraw cold turkey.I was completely paralyzed at this time unable to move any part of my body.So then I had the "fun" of learning to walk,talk,breathe on my own and even had to learn how to eat again.Another three months of hell before I could get out of the hospital but still not be able to go to my home.
Now I'm not saying that I'm not glad my family had the hospital do everything they could to save me because despite the fact that I'm on disability I still manage to work part time and enjoy every second of my life.What I am trying to say is,when your loved one is laying in that bed s/he IS being tortured,there is pain and fear and a real wish that it would all end,many times I prayed to just die and be out of the pain I was in.Looking back I would never want to go through that again and I do have a living will and my family all know what my wishes are.Call hospice and let me go when my time comes.

Locations of visitors to this page