Ken Murray, a Family Practice physician at USC, has an interesting post about death:
It’s not a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s unusual about them is not how much treatment they get compared to most Americans, but how little. For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently.
Of course, doctors don’t want to die; they want to live. But they know enough about modern medicine to know its limits. And they know enough about death to know what all people fear most: dying in pain, and dying alone. […]
The whole thing is worth reading.
This is why the whole “death panel” nonsense is poisonous – it leads to futile care, ugly, painful deaths and a massive waste of money.
rlrr
My parents in FL had a neighbor who was getting aggressive treatment for prostate cancer at the age of 95. The kind of cancer he had typically takes more the 5 years to become fatal…
Butch
Speaking as someone who just recovered from a serious illness I really did not need to see this post.
Josie
Thank you for posting this. My mother is in the last stages of Alzheimer’s at an assisted living facility. We signed a DNR order for her at the facility and at the hospital, just in case someone screwed up and sent her there. She is now receiving care from hospice and has actually improved a bit from their care. It is comforting to read a post from a doctor that mirrors my feelings about this whole process.
jrg
Get your living will and medical power of attorney filled out, and on file, at least in triplicate: with you, your agent, your lawyer, and possibly your doctor.
Make your wishes known. Don’t let some right-wing whack job like Sarah Palin or Bill Frist try to make your medical decisions for you.
Schlemizel
@Butch:
Butch – I just finished radiation theory for throat cancer – whats the problem?
The time to think about end of life is before you have to. The fact that doctors have a different view of appropriate treatment than hysterical politicians is an interesting clue to the value of some treatments.
I have a cousin and a sister, both RNs, who worked in terminal cancer wards and dealt with people with no viable treatment option other than pain management. The deal with “pain management” is that you develop a tolerance for morphine so it takes more and more to actually stop the pain. Eventually the dose needed is fatal. So the question comes down to “Do we make the patient suffer in agony for several days until they die or do we give them a lethal dose?” Thats a tough call & it should involve the patient and their family.
Cat Lady
@Josie:
You’re me, exactly. My mom’s at the end of late stage Alzheimer’s and a nasty C-diff infection, and if I let my beloved cats go through what she’s gone through, everyone would think I’m a monster. The scariest part is knowing that once you have Alzheimer’s there’s no way to consent to and manage assisted suicide, like in death-with-dignity states. It’s going to be a huge problem with the boomers coming through the system.
Zifnab
It’s a tough call for anyone to make. How do you turn to your siblings or your surviving parent and say, “I think it’s time to let go”? Aside from the wrenching psychological torment losing a close family member can cause, it’s practically unAmerican to just roll up shop and say die.
jrg
@Zifnab: That’s another reason to be very explicit about your wishes before the time arrives. It absolves others of the responsibility for making the decision.
Josie
@Cat Lady:I’m so sorry about your mother. If you can get hospice involved, things do improve. The loss of decision making is scary, especially when you wonder in the back of your mind if you have inherited the disease. I have already told my oldest son what I want done – good music, lots of really good drugs and no hospital.
debit
@Zifnab: This is why you talk about it beforehand. My mom and siblings refuse to discuss this with my father, who has has one bypass and says he’ll never go under the knife again.
So we had the talk: in the event of this (example) happening, what do you want us to do? For example, he says he would rather die than be intubated again. I asked him, “What if it would mean saving your life and was only for a day?” He said he would rather die. So. I don’t want my dad to die, but I’ll respect his wishes and I will go nose to nose with any family member who tries to overrule me.
rlrr
* Living Will
* Another Living Will
hildebrand
My Mom worked as a third-shift nursing supervisor at a very nice, comfortable, humane nursing home. Her medical knowledge was vast, her understanding of end of life issues profound.
After she died, her co-workers told me stories about how my Mom would take all of her charts and other administrivia into the rooms of patients who she knew would not last the night, and who had no family present. “Nobody should die alone.” She tended them, made sure they were as pain free as possible, and stayed with them until they died. She did this for well over 30 years.
No grand point here, I guess, just thinking about a remarkable person and her understanding of the needs of the dying.
Wag
As physician, I completely understand this. When I talk with a patient (especially right wing patients) about options for treatment, patients have a hard time believing that the aggressive treatment would have such a terrible impact on their quality of life. The Right to Life movement has had a tremendous negative effect on our ability to have rational discussions about end of life care we may not be able to have rational discussions with the public at large, but we can have them with our families
rlrr
Conservatives with all their talk of liberty and freedom want radical clerics to decide these matters for us…
honus
@rlrr: a friend of my father had that same diagnosis when he almost 90. The VA (he was a tank driver in WWII Europe, and a retired heavy equipment operator without health care, so VA was his only option, but that’s another rant) refused treatment because he was too old, but the cancer killed him painfully in a couple of years. So I can see it being palliative.
Isidor
Are there any stats/studies backing up the claim that doctors typically die differently than the rest of us? I can believe it, but I wonder whether this is just based on anecdotal evidence or something more.
WereBear
I’m one of those who feel it shouldn’t be a question at all; there’s no reason to make anyone suffer.
Ironically, my medical friends tell me it’s the “most religious,” by which they seem to mean the most vocal and fundamentalist of relatives, who are the most difficult to deal with. I think seeing such beliefs in actual practice leads to medical folk being very unlikely to follow such a path themselves.
Gin & Tonic
@Cat Lady:
This. We are considered to be acting humanely and will elicit sympathy from others when we make a decision to stop a pet’s suffering, but will be charged with a felony if we treat a blood relative the same way. Why does the law (and custom) require me to treat my mother worse than I treat my dog?
elmo
Articles like this make me spitting mad. Oh yes, doctors are much more reasonable about their choices. So wise they are, unlike we lesser mortals.
A big part of the difference, that this article doesn’t delve into, is that doctors either aren’t lied to or they can tell when they are. Doctors lie to terminal patients and their families – at least oncologists do. If you’re in a position to sort out the lies from the truth, or if being a colleague means you get the truth in the first place, you’re in a much better position to make informed choices. If you’re not, then you’re completely at the mercy of whatever soothing falsehood the doctor chooses to lay before you — and then yeah, you might not make the most reasonable choices.
Bill H.
My sister-in-law had a mild stroke over the holidays. The staff neurologist ordered a CAT scan, which showed the stroke, to be followed up by an mri. She is clausterphobic and was freaking out about not wanting the MRI and her adult children were trying to talk her into it. I was on her side, a rare event for me, but stayed out of it.
The neurologist who had treated her husband showed up and said the MRI was not needed. “What it will show,” he said, “is that she had a stroke, and we already know that. We’ve been treating strokes since long before the MRI was around.”
My kind of doctor. There’s hope for the future of the medical practice after all.
Schlemizel
@WereBear:
I personally don’t think it is a tough call but I wouldn’t demand everyone agree with me. As Catlady noted above, we would not put a pet we love through the torment we would put a human.
The problem really hits when you have a divided family or a staff that disagrees.
My 92 YO grandmother wanted no extraordinary measure taken but it was not in writing. After he last stroke she never regained consciousness, as per her wishes my grandfather asked for no feeding tube. Their doctor (a real piece of work who knew how to bilk Medicare for every dime) told him he was killing her by starving her to death. Grandfather relented & agreed to the tube, grandma lived a few extra days for no reason (outside of medicare payments) and grandfather regretted it bitterly the rest of his life.
Dr Mark
A randomized clinical trial published in the New England Journal of Medicine last year showed that lung cancer patients receiving early referral to palliative care services had better quality of life and actually lived longer.
Aggressive treatments in the waning months of life are actually of unproven benefit.
Raven
@Isidor: Oh yea because if we had some fucking numbers to prove it that would make a difference. spit
Someguy
If it was up to me, if somebody got an illness that has less than a 30% 5 year prognosis, I’d push ’em out on the glacier personally. It’s cruel to them and cruel to society to keep them alive. You want to know why the cost of medical care is so damn high, look at the folks that the Medical/Industrial complex puts a million a year into to keep alive to keep them insurance and medicare payments flowing. Yeah, sure the hospital and the doctors and Big Pharma care about *you*…
a hip hop artist from Idaho (fka Bella Q)
@Gin & Tonic: I have a little story like that. Sixteen years ago, my parents died, both at home, with hospice care and the same home health angel who’d been with them,for 5 years since my father’s stroke. Neither, by their choice,had intensive medical intervention for their terminal diseases, although they had excellent insurance. My father died holding my mother’s hand – I was on a horse, which is exactly where he’d have wanted me to be, and as I dismounted, my good friend came and took the reins, hugged me and said simply “your mother called.” Six months later, my mother died while I sat in her mother’s rocker next to her bed.
Neither had significant pain,thanks to hospice, and both died in their own bed. Yet I lost count of the number of people who asked me – no doubt meaning well – “why didn’t you do more?” or “do you wish now you’d gotten them more treatment?” or similar things. I know many, many more folks likely thought those things and didn’t voice them.
Yet some of those same people admired me for euthanizing beloved animals, and helping others to do the same. WTF? They do not see the cognitive dissonance. I can’t help them.
rlrr
@Dr Mark:
Aggressive treatments in the waning months of life are actually of unproven benefit.
To the patient. The doctor reaps all kinds of benefits.
Raven
@a hip hop artist from Idaho (fka Bella Q): When my dad finally hit the wall the entire family was with him and we shut off the machine. I never would have thought that was a good thing. It was.
elmo
@rlrr:
Exactly.
a hip hop artist from Idaho (fka Bella Q)
@elmo: Some oncologists are quite truthful. After surgery, which did not get clean margins, my father, about to turn 80, saw an a radiation oncologist, who told him that she could treat him with radiation and indeed refer him for chemo, but that both were unlikely to prolong his life more than months, and the quality would be poor. Or she could prescribe pain meds, prn, which could be traded up for stronger later. He thanked her and elected for the script. When he told me the story, I recognized her name as the radiation oncologist with whom I’d competed in the same division for years. I sent her flowers, with a note of thanks, as it was the off season.
@Raven: It is kind of surprising, isn’t it.
Maude
@Schlemizel:
I have a detailed DNR and living will at the doctors and hospital.
I spent twenty months on a hospital bed with a woman at home who was not going to get better. The husband felt guilty and wouldn’t allow her to die. I was not there for the last few months of her “life”. Another woman who took care of this woman called when she died. I said that she escaped.
I get enraged when someone is made to suffer because the family can’t let go and orders something like a feeding tube when the person is ready to die. That is always about the family and not about the person in the bed.
r€nato
reading these comments makes me angry that so many people who know little of difficult medical decisions, have so much influence over those decisions.
I’m thinking both of the Terri Schiavo hullaballoo (I don’t know how her husband Michael restrained himself from physically assaulting some of those heartless idiots who selfishly chose to turn his personal tragedy into their attempt to score cheap political points) and of the recent incident in Phoenix where a zealous bishop thought it was a terrible tragedy that a mother of four children should not have been allowed to die for the sake of his political views.
Isidor
@Raven: If one is evaluating the claim that doctors die differently than others, of course it makes a difference to know what evidence exists. Coming from a doctor, I would hope that any such claims are grounded in something more than anecdotal evidence but it’s not clear from the piece whether that’s the case.
I’m very sympathetic to many of the views expressed in the piece. Frankly, I think most of the piece could hold without even making the claim. But even if one agrees with the overall point, that doesn’t mean one shouldn’t question any of it. I don’t want to make a claim I can’t back up.
So again, both as a human being and a researcher I’d very much like to know what evidence exists to back up that claim.
pseudonymous in nc
@elmo:
And the fundamental problem in the American Way of Healthcare is that you really don’t know whether the advice you receive is offered on the basis of what can be billed for it. Some doctors will do the right thing in terms of being honest about quality of life and aggressive treatment towards its end, but having to second-guess makes the process so much harder.
Interrobang
@elmo: Doctors lie to terminal patients and their families – at least oncologists do.
You know, that’s a hell of an accusation to make. You just basically said that every single member of a profession behaves unethically. You got anything other than an anecdote to back that up, or are you just one of these hippy-dippy anti-medicine woo freaks?
I’m taking this kind of personally, since both my mother and a good female friend of mine are going through cancer treatment right now, and in both cases, every doctor — oncologists, GPs, cardiologists, gynecologists, you name it — has been helpful and wonderful and a model of professionalism and probity. Your anecdotes against mine, shit-for-brains, unless you’ve got some kind of statistics to back it up.
Personally, the thing I didn’t like about this article is that it seems biased toward the “no treatment” option. Too many laypeople already treat cancer as if it were an automatic death sentence, and as if chemotherapy were worse than the cancer. (It’s really not; if you don’t believe me, at least believe that guy, who’s a surgical oncologist who doesn’t lie.) If you genuinely are terminal, that’s one thing, but even there, don’t confuse “terminal” with “have to turn my face to the wall and die,” either. Case in point, Patrick Swayze died of pancreatic cancer, seems to have gotten good palliative treatment, and survived a fairly astonishing fourteen months after Stage IV diagnosis.
elmo
@a hip hop artist from Idaho (fka Bella Q):
I’m glad to hear that story, truly. You were very fortunate.
My mother died of lung cancer at the age of 53. She had surgery immediately after the diagnosis, to remove a lobe of one lung. Two and a half years later, she developed a severe pain in her arm and shoulder on that side. The doctors’ treatment plan involved an aggressive, highly invasive surgery to sever the nerve.
They explicitly urged this difficult and painful surgery because, they said, she had a long life ahead of her.
After the surgery, on August 31, 1990, they referred her to hospice. But we naifs didn’t even know what that meant. It was explained to us as a “home health nurse.”
Recovery from the surgery was slow, painful, and difficult. She had a terrible reaction to the morphine, and then to the withdrawal.
In late October, my Dad – near retirement but still working, because why not? – happened to mention the word “hospice” to a co-worker, who was suitably sympathetic and horrified because “I didn’t know your wife was terminal.” She knew what hospice meant.
On December 14, she became paralyzed. Terrified calls to the doctor. Doctor phlegmatic. Oh yes, he said, that’s about what we expected. Now it all comes out – yes, the cancer is back, yes, she’s terminal, it won’t be long now.
She died a month later. My Dad retired about four months after that. He could have taken early retirement, but there hadn’t been any reason to — Mom was going to live a long life, right?
elmo
@Interrobang:
Yeah, it’s a hell of an accusation to make. And I’m very glad for you that your experience with the profession is different from my own. But after what happened with my mother, I did a little research — not much, granted, but enough to satisfy me that my experience wasn’t completely unheard-of.
There was a theory with some support to it, that cancer patients who believe they are going to survive have higher quality of life and higher survivability than those who don’t. And that evidence was used to justify oncologists, in particular, giving a rosier picture to their patients than the condition justified.
You can call me names all you like. I’m not anti-medicine woo, far from it — which is partly why, when I read the materials about doctors lying to their patients because of this “hope heals” bullshit, it just made me angrier.
Triassic Sands
@Zifnab:
Frontline on PBS has a video (“Facing Death”) dealing with end-of-life choices…and how badly family members can botch the decisions. The video is not only worth watching, it ought to be mandatory (except making something mandatory in America is tantamount to forced slavery with torture).
The video follows several gravely ill people and the decisions they and their families make in the last months of their lives. In the end, one doctor admits that she probably violated her Hippocratic Oath by doing harm. It’s amazing to watch how tenaciously the people cling to what is left of their lives — and what’s left is mostly pain and suffering.
“Facing Death” is available on the Frontline website. It’s a cautionary tale about just how much is enough and how much is too much in trying to prolong the lives of the dying. In the film, they all end up dying and all of them suffer despite supposedly heroic efforts to defeat death.
The film is also relevant to the discussion of the cost of American health care. These are people who are getting second or third bone marrow transplants, procedures with almost no hope of succeeding in any meaningful way, but with huge price tags attached. No sane health care system would or should go to such lengths to fend off the inevitable.
When my father died (of prostate cancer), what was important was not how long he hung on, but rather that we — the whole family — had some time to get meaningful closure. His actual death was a relief — for everyone. His suffering was over and although most of us didn’t believe in an afterlife, knowing he wasn’t in pain anymore was good enough.
I was pleased to see, during a recent hospitalization, that one of the first things they asked me was about a DNR. I have an end-of-life directive and for the duration of my stay in the hospital I sported a colorful DNR wristband. Lots of people say that people in their sixties ought to have living wills, but I think 18 is a better age. People can face end-of-life decisions at any time, and it’s going to be easier (no matter how tragic the circumstances) if it’s something that has already been carefully considered.
JustMe
Doctors lie to terminal patients and their families – at least oncologists do.
An earlier era of cancer treatment was for doctors to avoid talk about it and not break the news to the patient that things were terminal, because that would just make the patient worse. Stupid but that’s what it was.
elmo
@Interrobang:
I’m not sure how much I should bother with somebody who decided to call me “shit-for-brains” right off the bat, but ten seconds on Google brought me to this:
Again, I’m glad for you that your family’s experience is different. But no, it’s not just the one anecdote. I might very well have shit where my brains should be, but this is real.
Mnemosyne
@elmo:
Ugh, what a horrible thing for your family to have to go through. Honestly, my first thought was not that the doctor lied to you outright about your mother’s cancer having returned prior to the surgery, but that he fucked up her diagnosis and didn’t want to admit it. It’s way, way, way too common that doctors don’t want to say things like, “Sorry, I thought this was a nerve problem, but I realized once I did the surgery that the reason she was having the pain was that the cancer had spread,” because that would indicate that they had made a mistake, and God forbid a doctor should ever admit that.
Soonergrunt
@rlrr: I tried to have a living will made wherein I stated that if I was ever PVS, any politician who disagreed with my choices or those of my family could take sole care and custody of me by fellating me to orgasm, because if he cared enough about me to totally humiliate himself to give me a happy, he probably really did have my best interests at heart.
The guys at the unit legal office wouldn’t make the document. They thought it was funny, though.
elmo
@Mnemosyne:
I did consider that, yes. I don’t think it’s much better, as an alternative, and it doesn’t — at least to my mind — explain the calm, matter-of-fact acknowledgement in December that she was dying. But you’re right, that is a possibility.
Mnemosyne
@elmo:
So this happened recently, or 30 years ago? I’m not saying you shouldn’t be wary if cancer raises its ugly head in your family again, but it really isn’t routine practice anymore to lie to cancer patients. My father-in-law has a nasty brain tumor (glioblastoma multiforme) and the doctors have been very up-front with him the whole time that it is inoperable. They’ve bought him some extra time with treatment, but it’s always been very clear to all of us that it will end up killing him.
JustMe
“I remember being in medical school years ago and being distinctly told that when a person has lung cancer, never tell them they have lung cancer,”
They still do a variation of that– you’re supposed to tell them that “the tests for cancer came back positive,” not “you have cancer.” Weirdly, the culture used to have some strange stigma about “having cancer” where this was something people didn’t talk about at all, and doctors participated in that culture of silence. This was all way before I was born (plus, my family is in medicine, so illness is treated basically as a mechanical problem to be fixed) so I don’t relate to it, but there are some strange attitudes towards sickness and especially cancer in the US, and this affected our medical care.
elmo
@Mnemosyne:
1990. Seems like yesterday.
I’m very sorry to hear about your FIL. A dear friend of mine fought one of those to a standstill for several years, and did eventually succumb to it. In the meantime, though, she had a tremendous quality of life. Best wishes to him.
WereBear (itouch)
I’ve found that doctors far prefer to be honest; if you give them the chance. Also, it’s not ethical to Make Pronouncements. They don’t know these things down to the day; no one does.
However, oncologists do know what is likely to happen if X or Y is decided upon. Discussing these kinds of if/then statements with any doctor regarding possible treatment is the best way of figuring out one’s options… And that us how they should be regarded.
Some people are going to want to feel they have given themselves every possible chance. Some want the quality of life more than an iffy treatment with considerable downsides.
That’s why we need to discuss it now.
DougJ
Good post.
Felinious Wench
When my grandmother was in her last days of life, after a 5 year battle with Alzheimer’s, I had to go to war with my right-wing evangelical cousins. They wanted her on a feeding tube (she was 85 and had told us she never wanted that, back when she could comprehend anything). They claimed to let her die without intervention was equivalent to killing her.
I asked three questions. “If you’re so confident she’s going to heaven, to a better place, why are you so against her going there peacefully? And if there’s nothing to fear in death, as a Christian, why are you so afraid of it yourselves? Are you concerned about what happens afterwards, just in case you go to hell?”
They backed down, and she died peacefully the next day.
Larkspur
@elmo: This reminds me of the blog of Kirsten Paisley, Barefoot and Laughing. She died on July 1, 2011, leaving behind some wonderful, insightful writing on all sorts of topics.
This blog entry is from June 16, 2011. Kirsten had been diagnosed with metastatic melanoma three years earlier, and her physical condition had grown suddenly much worse. She was dealing with pain, difficulty breathing, mets-related bone fractures, and more. It sent her on another trip to the ER, where she describes the following:
gttim
My sister is an RN at a hospital and has witnessed all of this. She is on my living will and durable power of attorney. She knows quality of life matters and to let me go easily if that cannot be maintained. She is on my parent’s as well, as am I if she cannot be there. We have all talked about this. My other sister is on nobody’s living will. She is an evangelical christian and has already voiced her opinion about doing everything medically possible.
Sometimes I think people become evangelical Christians because they are just scared of death.
a hip hop artist from Idaho (fka Bella Q)
@elmo: Your story is heartbreaking, and it’s clear why you think what you do about oncologists. I’m so very sorry.
cckids
We made the decision a bit over a year ago for my son, to stop with the hospitalizations & IV antibiotics. He’s 28, & multiply handicapped, but has always been happy & had lots of fun with our family. Yet, a f*cked up hospital/doctor combo 5 years ago left him much more medically fragile, with a trach & on oxygen, with MRSA & pseudomonas & other recurring infections. In retrospect, we tried too hard that year, thinking that “this procedure, this time, will fix things” & he’d be back to normal. No, he won’t, not ever. So, now, he is, in effect, in hospice at home.
And, though it was an incredibly tough decision, it has led to the most peaceful year we’ve had since this nightmare started. No more agonizing about what is “right” to do; when do we go to the ER, etc. He’s not in pain, he’s happy being home with us, we’re together. He’s fought off a few infections on his own. We know one will come along he can’t beat, and that is how it is. He’s wrapped in love here, with his dog & family, and will be at the end.
cckids
@Gin & Tonic:
Because, sadly, there are those who would “put Mom (or whoever) out of her pain” for selfish/financial/ignorant reasons. That’s just reality. As my 19-year old says, “most laws exist because somebody’s gotta be an asshole”.
But I agree, totally, with your point. Too many people at the end of life suffer WAY too much, often for stupid reasons.
jrg
@gttim:
Every sane person is afraid of death, but I do think that fundies and evangelicals are less capable of dealing with it than most. Their entire belief system is built around denying that death really exists.
@cckids:
I’m sorry to hear that. My dad died of pancreatic cancer a few years ago. MRSA complicated his final months quite a bit. That’s a risk everyone should be fully aware of.
Walker
@elmo
If you want a truthful physician, I have always found that ex-military physicians are the best in that regard.
HeartlandLiberal
When my mom died about six years ago, it was after eight miserable years being totally helpless and paralyzed on one side after a stroke. Bedridden, having to be lifted to be put in a wheel chair, her last eight years were everything she had not wanted at the end of her life.
When it became clear that her heart was finally failing, I had to look forward to a potential fight with my brothers, especially the youngest, because he was in his newly found religious salvation deeply embedded in the death denying fervor that ironically implants itself into many conservative thinkers, ironic because it seems to deny the very religious beliefs they espouse.
Fortunately, the old country doctor who had taken care of three generations of my mother’s family took my brother aside, and gently but firmly explained the facts of life to him.
Mother was dying. There was nothing, absolutely nothing that could be done to stop it. Her congestive heart failure was at a critical stage. Any intervention measures would mean weeks and perhaps even months of prolonged life, but in constant pain, agony, and suffering. Was that what he wanted?
That evening we met with the hospice group counselors in the hospital, and arranged for mother to be returned to her nursing home under hospice care. Her bed was equipped with a special mattress, and a hospice nurse checked her every day. Mother was still able to feed herself and eat for a couple more weeks, but at that point, she started fading fast, and the caretakers followed orders. There was no force feeding.
I had had to return home, which was 500 miles away, and was alerted that the end was near, but was not able to get there before she died. But my two brothers took turns sitting with her, and one was with her as she passed away.
There need to be more doctors like that old country doctor who had cared for many generations, and already himself was looking ahead with understanding that death does indeed come to us all. The tragedy is that in our modern death denying fervor, we introduce so much unnecessary and useless suffering at the end for so many.
Silver
@jrg: Really? I’m sane (granted, crazy people all say that, I know) and I’m not afraid of death at all. I don’t invite it, but the actual thought of dying doesn’t scare me.
I’m terrified of the thought of my wife dying, however.
jrg
@Silver: Maybe I’m wrong. The thought of death bothers me. I don’t obsess about it, but I do consider it from time to time.
I hope that by giving it some consideration, I’m able to go with some level of grace when it’s my turn.
elmo
@a hip hop artist from Idaho (fka Bella Q):
Thank you. I appreciate that.
I was 24 when she died. I’m 45 now, and I’ve been to see a doctor twice in the intervening years. Once for stitches, after intervening in a dog fight; once for a broken ankle. Straightforward mechanical fixes that don’t require me to trust what they say. I’m fortunate to be obscenely healthy, and when that starts to change(because it does for everyone) it’s going to be very, very difficult.
cckids
@pseudonymous in nc:
And sometimes, they speak to patients or those making decisions for a patient in euphemisms, or use vague terminology, apparently believing that everyone will have the same understanding they do.
When we made the decision to go to a respirator for my son, it was at the recommendation of a pulmonologist who had looked at his records from a 30-month time frame, seen how high his CO2 average was, how it fluctuated, and recommended a respirator at night only, to clear the CO2 from his system & give him more clarity. As a specialist, he was only focussed on “fixing” that problem. The hospitalist, who by job description should have been keeping us informed about the whole picture, met with us & said things like “you do know this could make some things more difficult, yes?” We were, at that point, 3 weeks into our 4th hospitalization of the year, sleep deprived & beyond stressed out. I remember thinking he was talking about bathing, or outdoor activities.
It wasn’t until weeks/months later that it hit me–he meant, if things go south & you need/want hospice or other “end of life” treatment, there is a whole new circle of hoops you’ll have to jump through & a really big decision to make–shutting off the respirator. We probably would have made the same decision–things had gone so bad, so fast, that we couldn’t quite believe that he wouldn’t get back to normal, but still, having an honest, frank discussion would have been so much better.
elmo
@cckids:
cckids, that has got to be so incredibly hard. I’m in awe of your bravery.
Mnemosyne
@jrg:
And it’s an outsized fear that, to a large extent, doesn’t seem to exist for people who belong to mainstream churches. Is it because fundamentalists have built up this big, scary, impossible-to-please God who sounded awesome when he was going to be smiting other people, but now they’re worried that He’s going to turn on them?
cckids
Help, mod hell! Should have known better, even in a medical post, than to use the dreaded s p e c i a l i s t word. FYWP.
cckids
@elmo: Thanks, it feels more like common sense (finally) than bravery. We didn’t realize, until it was gone, how heavy the “when to treat” burden we were carrying was.
Mnemosyne
@jrg:
I’ve been listening to the new Foo Fighters album and it was funny to realize that Dave Grohl (who is the same age as me) has come to the same realization I have: I have started that long, slow crawl to the grave that will continue on for the rest of my life (in my case, probably another 40 years at least, assuming I avoid cancer) and, seriously, who the fuck decided that was how life should work? It’s not FAIR!!
This is the advantage of listening to rock music written by people the same age as you are. :-)
Schlemizel
@Silver:
“I’m not afraid of my death, I just don’t want to be there when it happens” – Woody Allen
Dieing is not the hard part – living, particularly after the lost of someone so dear would be much harder – you’re right.
Schlemizel
@cckids:
I am glad you are at peace and that you made the right choice. I cannot imagine how hard that must have been. Each of us should be grateful for every day we go without having to face something like this.
JoyousMN
This is only anecdotal, of course, but I believe the poster was right about doctors.
My dad was a doc. General Practitioner, who also did chest and abdominal surgery. He practiced from 1950 to 2003.
When he was in his 60’s he got diabetes (he was healthy in so many ways, but loooved to eat. Unfortunately I got that from him). He told all us kids the diagnosis would take 10 years off his life.
In his early 80’s after suffering from several small strokes he was unable to care for himself anymore so he went into a nursing home; my oldest brother took over power of attorney and was there for him. He told us that Dad wanted zero health care options. He said Dad told him that he’d seen them all and knew just how effective they were and wanted none of it. Dad took Tylenol for pain and that was all he was on to the end.
In October of 2008 he had a much larger stroke that left him barely able to speak or move. I saw him a few weeks after and helped to feed him since he could no longer do this, but he was still pretty alert and we watched a football game together and I told him how much I loved him and I know he heard me say it.
In November he contracted pneumonia. I asked my brother what they were going to do and he said Dad had told him what to do in this case too: nothing. Dad died within two days.
I know he had exactly the care he wanted and thought appropriate and he’d had the experience to know what that was.
Mnemosyne
@cckids:
I remember you talking about your son here when you were first making the decision — I’m glad it’s worked out for you. You’ll probably have some regrets and second-guessing of yourself after it’s all over (it seems to be part of the grieving process), but it really sounds like you made the best choice for the whole family.
WereBear
Mr WereBear and I have been watching this show on the Biography Channel:
I Survived: Beyond and Back
If anyone is willing to look at any of these episodes with an open mind, that person will be struck by the amazing parallels each of these survivors share about their experience. I’ve never understood how, as a society, we pay lip service to what “religious” leaders say, but then react with extraordinary skepticism to actual, first person, accounts of what does come after. First person testimony is considered enough to send someone away to prison, even put them to death… but coming back to claim our souls live on after death, and, BTW, there doesn’t seem to be any one religious monopoly on that process?
There’s far more evidence at that link than any religion offers. As a proud secular humanist; I find that extraordinary.
Chrisd
Docs I know, myself included, aren’t necessarily wiser or more accepting of the inevitable. Some are, of course, but a lot of this hesitancy to get treatment is plain old self-preservation. Bad shit happens in medicine, and nobody knows that better than docs. I’m not talking about malpractice, or fear of malpractice. I’m talking about the bad shit in competent, standard-of-care, twenty-first-century medicine. This isn’t Star Trek. Sometimes the treatments are worse than the disease. Once you decide to start turning over the rocks in your body, you’re obliged to deal with what’s underneath.
dr. luba
@WereBear: Perhaps the experiences were similar because those who experienced them were undergoing similar physiologic processes?
Peace of Mind: Near-Death Experiences Now Found to Have Scientific Explanations
Seeing your life pass before you and the light at the end of the tunnel, can be explained by new research on abnormal functioning of dopamine and oxygen flow
(Sorry: linking not working for me today: http://www.scientificamerican.com/article.cfm?id=peace-of-mind-near-death )
Scamp Dog
@Dr Mark: I’d say that sounds more like they’ve proved it to be an anti-benefit.
Felinious Wench
@WereBear:
Only reason I believe what I do is because of what happened when I drowned as a teenager, and was brought back. My doubts about any religion or faith are legion, but in the end, I have first-hand experience I cannot discount. I’ve looked for any scientific explanation I can find for it, and I’ve yet to find anything that explains it (I was raised in an athiest household, and what I saw is NOT in line with what I was taught or even aware of.)
So, I’ve made peace with it. I still think religion is a man-made imposition to make us all feel better in this life. But I’m good with The Spirit, The Great Pumpkin, the FSM, or whatever else It is.
WereBear
Sure. But what does that mean? They’ve discovered the biologic processes by which this comes about.
By the same reasoning, they’ve discovered how chemistry works in the first breastfeeding, a potent dance of many hormones that lets mothers and babies bond.
Does that mean there’s no such thing as love?
Felinious Wench
@dr. luba:
Yes. The trick is explaining how some people going through them experience things that are not flashbacks or tunnels or that joyful feeling. I felt all of those, but I saw visions as well that I had NO exposure to, no frame of reference, no way to know.
Believe me, I have looked for any kind of scientific explanation I can find. I’m very aware of this research. In my case, it still doesn’t explain everything that happened.
Pete
@elmo:
I think I’d have to agree with you elmo. Ken Murray has no stats to back this up, it’s all anecdotal. Doctors are just like everybody else. Some will accept death and some will “rage against the dying light”. Like the doctor at this link:
WereBear
@Felinious Wench: That must have been an incredible experience.
I had always felt there was an afterlife, even after I ditched the various forms of Protestantism I was born into. (And if that had been Unitarian, I might still be so.) My first husband, of 18 years, was a very lapsed Catholic who didn’t believe in an afterlife. So we agreed that whoever went first would try to let the other know.
He died 3/3/99, and on Easter morning, I had an incredibly vivid dream, where my first husband appeared to tell me: I’m not really dead. Believe.
So, I do.
Beauzeaux
@Schlemizel:
Not universally true. It takes a LONG time for morphine to build up to a lethal dose. Just about every cancer patient dies before that point.
I’m a hospice worker and I’ve never seen a patient get to that point. Mostly cancer patients die quietly of a stroke or heart attack at the very end. Until then they can usually be maintained conscious and relatively pain-free on morphine. My mother was on morphine suring the lat months of her life and was pretty comfortable for someone with lung cancer.
My most recent patient (also with lung cancer) had 9+ months pain free. The day before she died, she had some difficulty breathing, went into the hospital and died the next day. This is not unusual.
From reading the article it seems like doctors approach their own deaths as if they were in hospice. Pain management, minimum intervention, die at home if possible.
We all have to die sometime and this is the way I’d choose for myself. Once cure is not possible, care is still needed.
Felinious Wench
@WereBear:
Pretty much how I sum it up. With a shrug and “it just is.”
cckids
@Mnemosyne: Thank you. Not sure about the second guessing–it really feels like we’ve done all that, more than once. He had a crisis in Feb. this year when we truly thought, ok, this is it, we’ve got 24-48 hours to say good-bye. But he pulled through & has had a decent year. Even in the depths of that time, though, I never thought “no, lets get him to the ER”. We’re so done with hospitals.
Truly, my only fear is that, because we can’t get him into hospice, when he goes & we have to call 911/cops (because you have to when someone dies at home), the responding cop may be a Bill Frist-type ass & decide that we “let him die”, or did something to hasten his death. Because they do have that power. It wouldn’t stick, but it has happened here. And that would suck.
cckids
@WereBear: Me too. Not sure as to what its like; I want to believe that we can come back if we so choose. And I don’t really care if it is wishful thinking; so what? None of us will know until we get there. I just believe we go on, in some way.
opie jeanne
@Raven: Sometimes it’s hard to do even when your parent has an Advance Directive. I got to be the spokesperson for my sister and Dad when Mom was dying, and I had to face down the hospital staff and a surgeon who was set on operating even as he told us it would do no good; I also had them take her off the respirator and you’d think I was proposing to sacrifice chickens in the OR.
Much to their annoyance Mom did not die when the respirator was removed. She never regained consciousness after the initial incident (massive brain hemorrhage from a fall) and died peacefully three weeks later, with much help from the local hospice group. We were grateful to them.
Pete
Ooops, for someone my link was cut off. I’ll try it again.
Pete
Ooops, for some reason my link was cut off. I’ll try it again.
Pete
Sorry all. Just google, “Helping Patients Face Death, She Fought to Live” NY Times.
dadanarchist
My grandmother Ruth was the powerhouse of my father’s family. She had been a nurse in New Albany, Ohio, for nearly 50 years before she and my grandfather retired to Florida. She took care of my grandfather Henry after he had a stroke and was the dynamo in their local retirement community, serving as president of their association, organizing all the community’s annual events, cooking for sick neighbors, and looking after her grandkids, when we came to visit.
In April 1998 she was diagnosed, at 86, with breast cancer – the diagnosis was terminal. By July she was dead. While it was hard on my father – and particularly on my grandfather who followed her about 4 months later, dead of a broken heart, my uncle said – the whole family figured that she had known she was sick, but had chosen not to go through the debilitating and poisonous chemo treatments that would have only extended her life by maybe a year or two. She chose her death as she lived her life: with relentless energy, seeing us all before she passed, and with grace and peace.
cckids
@dadanarchist: She chose her death as she lived her life: with relentless energy, seeing us all before she passed, and with grace and peace.
And that’s what its all about, isn’t it? May we all be so brave & so lucky. Peace.
WTF blockquote? Fail.
RosiesDad
As a veterinarian, I can tell you that my patients get to leave this world with more dignity and compassion than way too many people.
But as it is for physicians, so shall it be for me. Having the knowledge to assess outcomes and options will be a blessing; comfort and quality of life will take precedence over the sheer number of days.
Eric U.
a member of my extended family was diagnosed with a brain tumor. Prognosis was not good if it was cancer. Turns out that it was benign, but the surgery to discover that has reduced him to a bedridden state that probably is not better than death. It’s just shocking that medical professionals cannot calculate the odds and see that invasive procedures just couldn’t possibly pay off in this situation, and that the potential downside was far worse than doing nothing
dr. luba
@WereBear: What’s love got to do with it?
(Old Tina Turner fan……..)
Ruckus
@Zifnab:
I’m going to go out on a limb here and state that the decision to place my dad in hospice was not at all hard. I worked for almost 30 years with my dad, day in and day out. He died in my arms. And yet the hospice decision was not difficult. It was impossibly hard for my sisters and as my dad had left me in charge I had to make it. He was dying, of that there is no question. I could make him as comfortable as possible or I could make him suffer badly. It was not his choice because he could not make one. I have never felt great about my choice but I have felt it was absolutely the correct one. And the reason is that this should not have been my choice to make, it should have been his.
Do your loved ones a huge favor, tell them how you want to be treated. You have the right to live like you want, those left behind have the right to know how you want to be treated when you are dying.
I_D_Inuse
Grace and dignity, when all is said and done is all I ask. I cried and screamed coming into this world and FSM I hope I have succeeded in bringing a little bit of hope to someone.
chopper
when my dad died after his second bout of cancer, he had the nicest things to say about the hospice nurses. but he had nothing but good things to say, also, about his oncologist, nurses, every one else down the line. when he decided to forego chemo when it came back, the docs were very supportive and straightforward.
he died with as much dignity as a man could in that kind of pain. my grandmother, who died in the infusion chair from a reaction to the chemo, was 90. i was surprised she went as far as to fight the cancer but she was a tough broad. she went in only a few seconds, so at least the fucking cancer didn’t have a chance.
also, i have a good number of doctors, cancer researchers etc in my family. all personal experiences aside, acting like doctors lie for a living is pretty fucked up.
Susan Kitchens
@Cat Lady:
I wish you all the best. My dad had C-diff in the last 2 months of his life, (bigger, chronic condition: congestive heart failure).
I can’t imagine the kind of misery of non-stop dysentary symptoms for someone who’s not mentally with-it enough to understand WHAT is going on.
It was bad enough as it was. Dad was copus mentus until the end when his b/p was so low that he wasn’t really w/ it anymore. Fortunately for our family, both he and my Mom spelled out their wishes w/ all proper docs. We were able to do the right combo of the intervention-ICU thing (raise his b/p until all the family was gathered & be together to talk it all through), and then, once we’d done that, take him off b/p meds, outta ICU, then home for a few more days of hospice care. He wanted to die at home, and he did.
Wishing you well in the midst of all the bleach wipes, and the kerjillions of gowns and gloves.
Ruckus
@elmo:
My grandfather went through the same thing in 1974. No one would tell him he even had cancer. He knew something was wrong, he knew he was getting towards the end, at 84 years old. My mother finally told him because she thought we owed it to him. He was gone in 2 weeks.
But I think, at least in my experience that the profession has changed and most docs now discuss the issues clearly and up front. And I’ve had my dad(alzheimers) and sister(breast cancer) die in the last 11 years. My dad could not understand day and night but I was fully informed. My sister was told everything every step of the way and was able to make her own decisions, she placed herself in hospice care.
Greyjoy
This is a really interesting discussion.
losgatosca
You post that like it’s a bad thing. If there’s one principle the right wingers stand got it’s that every activity should lead to as much futility, ugliness, painful deaths and a massive amount of wasted money.
Once you understand that, Iraq, death panels, austerity, and pretty much every other policy choice by these imbeciles makes much more sense.
Name, required
@WereBear:
Interesting. One of my friends is a doctor, and she said the same thing about her atheist patients- that, generally speaking, they were absolutely terrified by the thought of impending oblivion. She said it made atheism seem very unattractive to her. So, doesn’t seem like doctors’ opinions on this issue are universal, if we’re just swapping anecdotes.
Name, required
@jrg:
Yes, which is why Christianity has a long history of martyrs dying like sniveling cowards.
kerFuFFler
My 89 year old dad has been fighting multiple myeloma for about eight years but now it seems that fight is drawing to a close. Over the last year he has started two courses of chemo both of which had to be discontinued since the meds were killing him faster than the natural progression of the disease (he could not eat….).
At his most recent appointment, the doctors had scheduled yet another hip marrow extraction biopsy for him even though no differing treatment decisions would be made after reviewing the results. Fortunately my dad figured this out and refused the biopsy since previous ones had left him in a great deal of pain for weeks. “Monitoring” the progress of the condition via marrow biopsy hardly seems a worthwhile reason for inflicting so much pain and it furthermore would subject him to additional risks and infection. The best monitoring seems to be how good he feels, how much he eats and whether he can keep his weight up and move around. Simple red blood cell counts are easier to perform and are all that is needed to determine when transfusions are needed.
In this case, recommending the biopsy seems to have motivated by thoughts of ka-ching. Or are we missing something?
Thatgaljill
@kerFuFFler:
I wrote a blog post during the health care debate about how so much of health care is about all parties wanting more (greed to a certain extent). The Insurance companies want higher valuations and income, the doctors want to be paid for their knowledge, and none of us wants to lose our loved ones. My 96 year old grandmother died this fall and in her final weeks I questioned regularly why the doctors were doing X,Y, or Z when really it wasn’t improving her quality of life or the inevitable end result. In her case, and I’m sure in your dad’s, the doctors ordered the tests as a CYA for themselves, their hospitals and perhaps even the insurer. Not every patient or patient’s family will make the well-thought decision your dad did… and if the family feels the doctor didn’t do everything (s)he could, the doctor runs the risk of having to defend a lawsuit – because someone is always whispering in the air that there’s $$ to be had out there.
Thatgaljill
@Ruckus: A living will made the decisions about my grandparents’ care so much easier for my mom who is an only child. She discussed things with my sister and I at every stage, but knowing in clear terms what my grandparents wanted at the end of their lives made everything much less stressful than it could have been.