I think of Gould and his essay every time I have a patient with a terminal illness. There is almost always a long tail of possibility, however thin. What’s wrong with looking for it? Nothing, it seems to me, unless it means we have failed to prepare for the outcome that’s vastly more probable. The trouble is that we’ve built our medical system and culture around the long tail. We’ve created a multitrillion-dollar edifice for dispensing the medical equivalent of lottery tickets—and have only the rudiments of a system to prepare patients for the near-certainty that those tickets will not win. Hope is not a plan, but hope is our plan.
३१ जुलै, २०१०
"I prefer the more martial view that death is the ultimate enemy—and I find nothing reproachable in those who rage mightily against the dying of the light."
Wrote Stephen Jay Gould in “The Median Isn’t the Message." Diagnosed with abdominal mesothelioma, for which the median survival was 8 months, he lived 20 more years. Atul Gawande writes:
याची सदस्यत्व घ्या:
टिप्पणी पोस्ट करा (Atom)
पोस्ट्स
४८ टिप्पण्या:
So, as we get older, that final day beckons even closer. I didn't know that fact about Mr. Gould, nor in fact much else about him.
For something that is in fact a given, we fight against that day in so many ways. The death of a young person is very painful and can shorten the lives of survivors.
It probably comes down to each making an individual choice as to how we progress down this path. Too damned bad we don't really know what lies beyond, if anything at all. And, I do hope, and pray, there is something beyond.
Cheers to the very end; I hope.
A "plan" is good for the individual, but usually not for the group. This is the problem with government-run health care, as with so much government intervention in our lives: distinguishing between the individual and group, whether it's about rights, benefits, or freedoms.
I like Gawande's essay, but I'm on Gould's side. Health care should aim for immortality.
"Hope is not a plan"
A man could run for office on that.
Death doesn't bother me. I've seen too many and planned too well.
What's on the other side isn't a question that interests me either. If it's just the people who've gone before then that could be good and not just bad but totally fucked up because many were so torturously stupid while here.
I just think it's better to live right than to die wrong, and be glad, out of all the sperm that never met an egg, you had the chance to do more.
Advice to a patient experiencing a serious life threatening incident : Keep an intelligent family member continually watching over you as the "System" does its thing to you. Good people are everywhere, but so are the careless ones and the stupid ones. Hospitals are flawed places full of people that can over dose you to death in a buckhead second . A great doctor is a rare gift from God. Many doctors are not that great, so ask around. Death is not your friend. Death is a cruel and powerful enemy. Any person that speaks well of noble death is not a safe person.
Note the cases where the doctor was the one not ready to give up, or the children were.
Anyway, I can see a 40 year old not wanting to give up before everything has been tried. An 80 year old, not so much.
"We’ve created a multitrillion-dollar edifice for dispensing the medical equivalent of lottery tickets"
We've also created a multi-trillion dollar edifice for distracting people called the entertainment industry. We've created a multi-trillion dollar edifice for shuttling people around to places they don't need to be called the travel industry. We've created a multi-trillion dollar edifice in providing food for people who could cook at home called the restaurant industry.
We've created a multi-trillion dollar edifice for dispensing news that only a small number of people really need to know. A multi-trillion dollar edifice in electing people to political offices. A multi-trillion dollar edifice... the list goes on and on.
So, why is this particular edifice a problem?
Hope is not a plan. But hope is at the core of human functioning and creativity. Hope is not a plan. But when we hope, we might often fight for what we hope for, and in doing that nudge our hopes into becoming reality.
We hope, and we live. We lose hope, we lose life--medically or otherwise.
Atul is making a case for Death Panels surrendering us to his friend Death. That is evil.
Philip Roth calls death The Catastrophe. I agree with him.
Another New York paper is preparing us for when the government will tell us how to die.
The problem with socialism is not merely that it takes some people's money for others to use. It's that it gives others the idea that they have the right to decide how to spend it.
It's good that hospitals are examining the consequences of having such wide ranging abilities to cure disease and extend life, and that there are still diseases and lives that we cannot cure or extend. But these discussions are the business only of the patient and the doctor.
I'm with Paddy O. He said it perfectly.
The Left has been a pro-death movement for 40 years. They're just coming out of the closet.
tradguy, I agree that this might have been the author's intent here; but the article is actually well worth reading. I found this article on another blog earlier in the week.
The author makes a strong case for combining hospice with conventional care in those cases that are very probably terminal.
In the particular case that he uses as his primary example, a woman in her thirties had inoperable lung cancer (despite never having smoked) that spread to other organs and didn't respond to chemo. Her doctor knew it was terminal, but the family (understandably) wanted to try everything they could.
As a result, the last months of her life were miserable. And probably shorter, as the chemo just weakened her.
I'm with Gould too; up to a certain point. Now, this should certainly be a choice up to the individual -- don't get me wrong. But after reading this article, I might be more likely to make my personal choice hospice instead of an all-out attempt at cure, if I was in this sort of horrible situation.
I think atun is feeling guilty about wanting to keep alive people who have no chance, and hospice care came as a revelation to him.
People who are seriously ill need to prepare themselves for both possibilities.
My great-aunt decided -- for herself -- when enough was enough, and she signed the DNR order.
One thing Gawande talks about is allowing people into hospice care *without* requiring them to give up all hope of successful treatment. It doesn't have to be either/or. I thought that was a very valuable insight.
Our hostess wrote: One thing Gawande talks about is allowing people into hospice care *without* requiring them to give up all hope of successful treatment. It doesn't have to be either/or. I thought that was a very valuable insight.
Yes, that was a good insight, but I can't escape the impression that this is part of the journolist-like opinion-shaping media preparing us for government control of medical care.
Pastafarian...You simply described what is being done today with terminal cancer patients. The article pretends that there is a current abuse in that area which there is not. The next stop on Atun's railroad of lies is curtailing all effective care for those over lets say 85...80...75...70...65...60 and fat... and where next to save money? Wake up. We will all get older and slow down one day. That is not a crime. Killing us to redistribute our saved money faster is a slick crime even more criminal than the fraudulent windmills needed to stop CO2 pollution hoax.
"but I can't escape the impression that this is part of the journolist-like opinion-shaping media preparing us for government control of medical care."
Yes, I had that feeling too, and I anticipated it all along as I read. I expected it. But I do think there is less of that than you might think and that it is a subtle, thoughtful essay informed by real and serious participation in the details of the lives of many individuals.
@ Ann Althouse...That "doing both" is what happens today. The hospice run by nurses is for terminal patients on the last days before death and burial. The Hospitals run by a Medical staff are the active heroic fighters, especially in teaching Hospitals such as Emory here in Atlanta. This article starts by teaching us a falsehood about what is "Wrong" today and crusades for stopping our very effective system. Just because he is intelligent and knows the right words to express the problem does not mean he deals in truth. See, the Global Warming Scam taken seriously for those same reasons until whistle blowers pointed out that the facts were manufactured frauds even though done by intelligent men that knew the right words to express the problem. We need minds like yours and Rush Limbaugh's to keep on living and teaching so well years past the day you have some medical care needs that come with age. You are extremely valuable.
Skyler and tradguy, I agree absolutely that these decisions should be made by the individual, and not on his behalf by anyone else -- not by government panel or doctor or even family (unless the patient's unable to voice their wishes).
And it appears to me as though this author agrees with this too. But he also recognizes that eventually, we'll all, each one of us, find ourselves in this no-win situation, where the odds of long-term survival aren't slim, they're actually none. (Well, all of us who aren't mercifully hit by a bus).
And when I'm in that situation, this concurrent care program that he describes (hospice but with curative care too) sounds like a good option. Now, it turns out that if we offer this option to everyone, it will probably mean that more people will choose to give up the (often unpleasant and counterproductive) curative care and go into hospice period (because they'll find out that hospice isn't as bad as it sounds), but it will be several individual choices that lead to this group movement, not a death panel.
And monetary cost was just one of many disadvantages of curative care for incurable diseases presented here, and not the primary one. It's really a very well-written and touching piece.
Paddy-O and Skyler are pretty much on tgt, from my personal pov, but I must say that my RN wife w. 39 yrs nursing experience will tell you that more often than not it is not the aged terminal cancer patient who wants every costly, invasive, and painful procedure known to man expended on his body just to live a max of 3-6 more mos at best in painful tortured abject misery--it's the guilty children who are trying to atone for their own sins in the familial relationship by trying to buy salvation via heroic efforts to extend their dying parents life. Would that they had put so much effort and "caring" into the relationship in the years previously..
The most deceptive thing about the article is all the attention given to the case of the young mother with incurable cancer. We and the doctors have very different attitudes about her than about old patients. The struggle about fighting or accepting death feels completely different in this *less* common situation, so why is it used to frame the discussion? One answer is: It's very interesting and highly emotional. Actually, focusing on her tends *more* to orient us toward fighting death.
It's a wonderfully written article about what is already being done. But how many folks can tell that apart from a new realistic government mandated plan to relieve elderly suffering by allowing death in very treatable cases that are nowhere near terminal? The answer is you will be ordered to defer to the experts who are more educated than evil Medical Doctors...just like we were told to submit to the East Anglia "Climate Scientists" who were only faking whatever they needed to fake to get the desired results to empower destruction of the USA's economy. We need to hear the other side of this debate before closing our minds.
Didn't we used to have that preparation system and call it "church?"
Among those who are able to let go and not have futile treatments are the ones who learned early that aggressive medical care for one ailment can cause another, or sometimes be almost as bad as the disease.
The "gold standard" treatments for a disease often do not take into consideration the patient's overall health or age.
For example, my father was diagnosed with lung cancer at age 85. The gold standard treatment for his cancer -- and it was vigorously recommended to him -- is surgery that would remove half his left lung.
Gawande fails to emphasize enough how much doctors want to do what they trained for. It's not always the family that is begging for more treatments.
After a lot of thought and discussion he chose radiation. His reasoning boiled down to
*** "that will buy me enough years" and
*** "I'm old enough that I want to reserve that one last surgery I might survive for my back if it gets worse" and
*** "I'm old enough to die any day now and I don't want to spend any of those days recovering from surgery for something that's not causing me more pain than surgery would."
Two years later, he's doing very well for his age.
My mother and my 1st stepmother both died suddenly and unexpectedly. My 2nd stepmother had hospice care for 5 months after surgery, chemo, and radiation failed to subdue her cancer.
I spent 3 of those months taking care of both her and my father. He tried to do it by himself, but lack of sleep was wearing him out... hospice patients with dementia (no matter the cause) can't be left unsupervised at anytime and the sheer pressure of having to stay in the house with her was more than any of her children or his wanted him to bear.
Hospice is no piece of cake. My step-siblings hired an LPN full time to help me. I became the social director and household manager. (If you've ever lived in a small town where relatives and acquaintances consider visiting the sick a duty, you'll understand why a social director was a necessity.)
What Gawande fails to give a complete picture of is the hardship that some patients can put on whoever in the family provides care.
He notes... almost as an aside that hospice can consist of a daily phone call and a weekly visit. Um... when the patient's cancer has mestastized to the brain, that's not going to be that much help.
to be con't.
Stephen Jay Gould's entire essay is here.
Read it. It's definitely instructive. Gould was a scientist and an optimist. He did not "plan for the tail," but hoped for it. He deeply understood statistics. He went beyond the overly simplistic "mean survival time for your diagnosis is 8 months." He asked further questions: What is the mean survival time for young people in good health? He did not let pessimism take over, but you can bet that he planned for the worst as well. And he sought to "bend the curve" by getting into experimental treatment programs, you know, the kind that may well dissappear under Obamacare.
I do miss Gould. I think I'll read one of his articles tonight. Maybe this one.
con't...
My step-sister was there every weekend, my sister was there the last month, and my brother and step-brother were in and out daily. I can't imagine anyone having more support in providing care to a hospice patient than my father had.
Nor does Gawande mention the cost of any extra help. The full-time LPN wasn't much less expensive than nursing home care and not covered under Medicare or their supplements.
There was nearly two months where it seemed my step-mom would live for years being mentally 8 years old (she often thought I was her mother who had died when she was 10) and physically 2 years old. She went from this stable condition to death in 24 hours. It would be very hard on someone without the resources my father had to have gone through that time.
On the other hand, Gawande under-emphasizes the helpfulness of hospice personnel in the final hours. Our hospice nurse was present for over 18 hours before my step-mom drew her final breath. She and the co-workers she called when it was all over took care of notifying the authorities and removal of all the medical equipment and supplies that had accumulated... and probably a few things I'm still not aware of.
It's a huge commitment to undertake care for a terminally ill patient in the home. Some, probably most, are easier than my step-mom was and no one else has to meet my father's standards of care regarding daily routines such as being at the table for meals and being bathed and dressed every day. Though I do think his insistence on trying to keep her daily routine as close as possible to what she had established when she was well was in part responsible for her living as long as she did.
I hope we didn't cause her to live longer... suffer longer, than she wanted to. Her last words were "It's so hard to let go" and I wonder if we made that harder for her.
Ugh! Median survival time, not Mean survival time. I will write it 100 times in cursive: The median is not the mean, the median is not the mean, the median...
I apologise to The Professor and the other commenters for acting like I have all the answers. I don't. That is why listening to others is so valuable. I do have some experience with death of parents, good friends and clients who spent many days in Hospitals. In fact I died recently myself for nine minutes until a cute and personable African American Heart Surgeon reversed it. I think that the extreme pace of new medical knowledge and new treatments is the good news, but may be the bad news to those paying for it. Still, keeping a traditional attitude that we help the weak and helpless during infancy and during their apparent time to die is worth a good fight to preserve. We call that being Pro Life. Now about the Afghanistan sudden death syndrome....
Gawande irritates me. He gets a lot right but always, it seems to me, will miss the forest for the trees, or just ignore some really important point that doesn't conveniently align with his main idea.
Bah.
Life is precious, but Death comes for us all.
We should not rush Death and bring it before its appointed time. But when it is time, neither should one vainly attempt to avoid it.
Running away from Death, in the prospect that you might get away this time for a while, brings only a false hope. Death will come in the end, like it or not.
The only true hope, the only trustworthy hope, is the knowledge that Death does not have to have the last word, that there is Life, true Life, that Death cannot touch. But to have such hope, you must understand that this world, and life in this world, is NOT the be all and end all.
Those that have that hope are already saved.
An unusual number of interesting and well thought out responses. Death really does concentrate the mind. This year I've encountered the deaths and illnesses of several loved ones. I can't draw any moral or find any purpose in the pain that I have witnessed....I had some friends who died when I was younger. Their deaths were tragic but exemplary and sudden. Don't drive too fast. Don't smoke in bed when you fool around with drugs. You could fabricate some pretty little moral fable about their departure. ...Nowadays death comes after painful treatments and lengthy illnesses. There's no sense to any of it. I have an oppressive sense of nihilism--any act of kindness on my part is, ultimately, as futile as the breath they labor to take....I don't want any part of it, and my turn is coming up pretty soon.....I'd like to rage against the breaking of the light or cast a cold eye on death, but when it comes I'll probably just feel the discomfort of trying to suck one last breath out of the ventilator. There's no sense or moral to any of it, and it will happen to you.
Hospice care for a guy like me is frightening because they're hotbeds of NewAge. I don't like or trust those people, nor do I want to be surrounded by them when I die. It's bad enough hospitals have become "wellness centers" (a clear indication of NewAge indoctrination) but if I'm just being whisked into the emergency room, that's no big deal, but, at this point, I don't trust the nursing industry because I know it's been infiltrated by those loons and, if they know me (and some do) I don't want to be anywhere around them.
This is part of the unacknowledged problem of NewAge's grasp on our society: they're in so many places, while most people are laughing at how supposedly silly they are. They're playing for all the marbles while the rest of you aren't engaged, and don't even understand the game. This is why, sometimes, I'm compelled to damn everyone because you remind me of those who are asleep regarding terrorism and that works.
My ex-wife worked in a hospice. That homeopath she killed three people with was a doctor. It took the deaths of three people before anyone took what I was saying seriously and, to a certain extent, I'm still not taken seriously about it even now. These people are in love with death - yours and mine.
One more thing:
On my blog, you might have noticed I go off a lot on homeopathy, and assume it's because that's what I personally had to deal with. While there's some truth to that, obviously, the larger truth is that I'm not concerned that it's just water but that there's a belief system that goes along with it. It's that belief system that I never see anyone - whether on medical or science blogs - dealing with it. All they want to talk about is that it's a placebo - not why people are demanding, clamoring, getting all out of sorts, for that particular placebo. (Why is Whole Foods selling it - along with yoga gear, etc.? I ask for the billionth time) They know what they're doing but the rest of you don't - and they ain't telling - and by ignoring that aspect of what's occurring in our society, you are contributing to it's demise.
Crack Emcee -- I get it. At least partially. And it's not just one belief system because I think they make it up as they go.
You have to believe in homeopathy. Or you have to believe in reiki. Or you can believe in both and acupuncture and why not believe a chiropractor can cure cancer by twisting your neck too.
And if you can believe all that why not believe that chelation therapy will pierce the biofilm that's causing your kid's autism? You can reclaim your stolen child with that DAN! doctor if you just believe enough.
And have enough money.
And if it doesn't work, it's because you just didn't believe hard enough and let negative energy get in the way. Or went broke.
It's not a belief system so much as it is the willingness to believe any fucking thing somebody says as long as they are not a materialist and are trying to screw you out of all your relatives money.
If you're spiritual enough it doesn't matter what you're spiritual about or who does it?
The worst ones are the ones that know all this but still buy into it. That's why I dislike my current step-mother so much. She gets her homeopathy stuff from a woman that she calls her "witch doctor".
I threatened her cushy little deal if she tried giving that crap to my Dad instead of what his doctors prescribe for him. She talks up the witch's brew but still takes her blood pressure medicine... and the ativan and oxycontin and whatever else she can talk a doctor out of.
I ask my Dad every week about his medicine and has his seen his doctor recently. He knows he's being taken for a ride this time, but at least he's taking care of his own meds.
And there are a lot of people out there that you won't reach by talking about a belief system. These are the ones that have to be presented with the evidence, so don't discount what the medical and science people are blogging about.
My pregnant daughter didn't get a swine flu shot for herself or my 3 year old granddaughter because they didn't have the one without thimerosol where she lived... you have NO idea how much I tried to convince her to get it. And she's not a "believer" like you talk about, but she's not a savvy consumer.
I'm doing my best and at least she's not skipping the scheduled vaccines for my grandbabies or buying raw milk for them.
But I'll admit I do a bit of a tap dance around my daughter because the last thing I want is to not be welcome in her home.
It's actually worse than you think Mr. Emcee. You probably don't even have the "mommy" blogs on your radar... and they are a hotbed of woo and new age crap. I know I'll get some crap from a few people here, but a big part of the breastfeeding and home birth crowd are ate up with it.
And that's the problem with a lot of the new age stuff -- the starting point touches reality. Breastfeeding is best and home birth and midwives are fine as long as there is no "belief" that it's the only thing and that everyone can do it if only they believe and try hard enough.
It's a belief problem, but there's no system to it.
It's actually worse than you think Mr. Emcee. You probably don't even have the "mommy" blogs on your radar... and they are a hotbed of woo and new age crap. I know I'll get some crap from a few people here, but a big part of the breastfeeding and home birth crowd are ate up with it.
Yes! Donna is absolutely right. I'm on a moms' email discussion list where a few of the moms regularly discuss where to obtain raw milk. And no matter what studies one cites, it seems impossible to convince people that thimerosal does not cause autism. "Oh, well so and so saw a study that shows that it does." "Where?" "I don't remember, but so and so saw it."
It is now common parlance for non-nutritious food to be referred to as "nonfood," as though it were made out of plastic or industrial wastes. And the people who believe that organic produce is a necessity because regular produce will cause cancer are legion.
Among those who are able to let go and not have futile treatments are the ones who learned early that aggressive medical care for one ailment can cause another, or sometimes be almost as bad as the disease.
The doctor who treated my dad - after my dad refused further chemo - said he had a friend who had survived testicular cancer ten years ago. The doc asked the friend if had the friend known what the chemo would be like and had known he would survive before he started it, would he do it all over again?
The friend said no. He would rather have died than have gone through chemo.
If you've ever lived in a small town where relatives and acquaintances consider visiting the sick a duty
My dad was five days away from dying when a couple from his hometown dropped by his room for a visit. They had been to the hospital to see someone else. We did not know them. They were taking precious time from the family who wanted to be with my dad. As rude as it felt, I finally forced myself to take their arms and say, "Thank you so much for coming by!" as I escorted them out of the room.
Sick people do not need visitors. They need rest. Dying people need to be only with the people who are most important to them.
Donna B and Freeman Hunt,
"Crack Emcee -- I get it. At least partially. And it's not just one belief system because I think they make it up as they go. You have to believe in homeopathy. Or you have to believe in reiki. Or you can believe in both and acupuncture and why not believe a chiropractor can cure cancer by twisting your neck too."
Correct - that's why I go for the umbrella term, NewAge, because there's so many things to cover. And my ex was into all of them. The woman was practically a cartoon character: fine for a few months, and then someone would get into her head, and - BOOM! - for the next 6 months I'd have to deal with a kind of frenzied madness as she'd indulge in whatever behind my back.
I couldn't make sense of it until after my mother-in-law's death - The Big Bang - and then I found her diaries and got the scare of a lifetime when I realized what was going on at the hospice. When our marriage came apart - in less than 48 hours, 20 years of marriage were OVER - she said to me, in the most sinister manner, "We're in the hospitals - we're getting legit - you'd better 'get it' before it's too late!" and the rest (for me and my blog) is cult history.
"It's not a belief system so much as it is the willingness to believe any fucking thing somebody says as long as they are not a materialist and are trying to screw you out of all your relatives money."
There's three things this statement touches on that I think are important:
1) There ARE people who are telling them this. It's still the biggest regret of my life that, while I was married, I never investigated the question "where is she getting this stuff from?" You know, who was around her, feeding her this "information", and driving a wedge between us?
2) Once I discovered who was near by (which "friends" were NewAgers) then I discovered the larger problem - the Oprah's, Dr. Oz's, Ellen's, Rosie's, Shirley MacLaine, J.Z. Knight, The friggin' New York Times, and so many more - that's when my own kind of madness started, because I realized that's why I couldn't get any help: it's thoroughly lodged in the culture, in a kind of self-reinforcing loop, that I - "a man" as my ex's girlfriends made clear - couldn't make a dent in.
3) My favorite: "the willingness to believe any fucking thing somebody says as long as they are not a materialist and are trying to screw you out of all your relatives money." Welcome to Alice In Wonderland. Non-materialists after your money. People who aren't into politics but moved, as a unit, to vote for Obama. Non-medical people who appoint themselves as "healers". An open cultist, like Arianna Huffington, taken seriously on news programs - and no one ever asks her, "So, Arianna, how's John-Roger?" or "Those multiple murders, etc., your writers and staff committed, after going through the mandatory John-Roger indoctrination, how did that all get resolved?" or "Your pal, Bill Maher, seems to have come around to your insane view of quackery - how did you accomplish that?"
It's all just treated as normal. Nothing to question. Nothing out of place. And to the rest of us, living with the deadly fallout:
Deal with it.
wv: "cultur" - I shit you not.
Oh - and when you add in the Nazi problem, then we've really got a head scratcher on our hands, regarding what to do about it.
A thoughtful article that underlines the importance of having end -of -life conversations with our physicians, which doesn't strike me as "New Age." I took care of my mother, who suffered from first stage Alzheimer's disease, for the last five years of her life with the help of a nursing home and eventually hospice. A tough old farm girl she seemed determined to live- no matter what. At first she insisted on using all measures necessary to keep her alive, and I respected her wishes as her legal guardian. .As time progressed,however, she lost the ability to control her bowl movements, needed a wheelchair for movement and was unable to spend the weekends at our house. In her lucid movements, we discussed once again end-of- life care, and she finally agreed to let nature take its course with a DNR order asking only for comfort measures. As she deteriorated hospice entered the picture,and I saw how helpful there were in keeping a watch on her. They called me for an emergency set back, and I spend one night in the hospital with her when I though she would pass from a mild heart condition, but like a cat with nine lives in the morning she opened her eyes ready to continue. She hung on until just after her 94th birthday when a heart attack struck. From this experience, I gained a respect for my mother and her will to live, but also when, as Gawaande writes, knowing when to surrender and let "nature" run it course. And I admit that knowing when to surrender might be easier for those who have lived a long and full life, then those who are still young and fighting the odds with cancer, but in any case, I agree with the need to discuss the conditions under which you want to live, or die when facing terminal illness.
L
"A thoughtful article that underlines the importance of having end -of -life conversations with our physicians, which doesn't strike me as 'New Age.'"
RV, did anybody say the article was NewAge? So you're a condescending idiot, who can't follow a conversation, right? Am I right?
Jesus, I hate dumbshits like you. It reminds me of living in France.
Crack, the article mentions hospice in a positive light, and you wrote: Hospice care for a guy like me is frightening because they're hotbeds of NewAge, and then go off on a rip that I tired to follow as you further claim: I don't trust the nursing industry because.... I wanted to keep the focus on the main points of the article and narrated my mother's experience with the medical industry and hospice, which was generally positive because we did have that end-of-life conversation and so framed it that way. My experience in France included mis-communications but not name calling.
Well, welcome to America, homie.
Sick people do not need visitors. They need rest.
Sick people need to know that other people care about them. They don't need visitors who will drain their energy.
I don't get the sense that Gawande is setting us up for curtailing effective care for people over a certain age, as Traditional Guy claims. I think Gawande's arguing for figuring out what really counts as effective care.
. . . researchers followed 4,493 Medicare patients with either terminal cancer or congestive heart failure. They found no difference in survival time between hospice and non-hospice patients with breast cancer, prostate cancer, and colon cancer. Curiously, hospice care seemed to extend survival for some patients; those with pancreatic cancer gained an average of three weeks, those with lung cancer gained six weeks, and those with congestive heart failure gained three months.
Our family had a very good experience with hospice care for my father-in-law, who chose to stop chemo after it was clear that it was no longer effective against the cancer that was spreading.
He had several good months at home, being cared for by family, saying his goodbyes. I wish that we had known a little earlier how little time we had left, but I'm grateful for the time we had.
We held a memorial service for him Saturday morning. Family, friends, church, old missionaries who had worked with him -- it was quite a turnout.
At the reception that followed, one guest told her son that this felt more like a wedding than a funeral.
Apparently we all read into this what "suits".
Here's my takeaway. We aren't good at talking about death with those who are nearing that "life experience".
Is it any surprise that hospice workers are best at it? It's their job! I would venture a guess that priests and ministers are pretty good at it too.
Doctors and loved ones? Um...not so much. But it isn't even about them, and the "near to depart" aren't brave enough to tell them. They have enough worries as it is.
But, shhhhh, we can't talk about all these shared feelings when we are sure that "God" or "Science" or "Willpower" are on the way to save us!
Gotta LOVE humans!
When push meets shove, we are BOUND to figure it out.
As for visitors and small towns -- everyone that came to visit my step-mom was a friend or relative. It's just that she'd lived in that town all her live and there were lots of them!
I was wrong to use the word "duty" because I have been on the receiving end of that kind of 'visiting the sick' too and it resulted in me wanting to throw things at several women.
It was meant to be a gentle jab at small town life, but I blew it.
Understood it that way, Donna B.
And if we were friends? I would know to wait for your call.
From the article: Moreover, six months after the patients died their family members were much less likely to experience persistent major depression. In other words, people who had substantive discussions with their doctor about their end-of-life preferences were far more likely to die at peace and in control of their situation, and to spare their family anguish.
This rings true to me. I was privileged to take my in-laws to their primary doctor -- someone they had known for 30-plus years -- when they sat down with him to talk about end of life plans.
That visit helped articulate Dad's wishes, and helped Mom get a little more realistic about the likelihood that the doctor could give Dad a shot to boost his energy.
About a week before Dad died, while I was on duty, Dad's doctor stopped by. He looked over our med sheets and the box of prescriptions, checked in with Mom, and chatted for a while with Dad.
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