How Doctors Die
December 5, 2011 2:11 AM   Subscribe

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.
How Doctors Die.
posted by Foci for Analysis (53 comments total) 120 users marked this as a favorite
Poignant, and reminds me of this by the oft-featured-on-MeFi Atul Gawande: Letting go:
What should medicine do when it can’t save your life?

posted by Harald74 at 2:23 AM on December 5, 2011 [7 favorites]

Very moving article, having seen a loved one die after - or because of - aggressive cancer treatment. And seen another family member adamantly refuse any treatment for his cancer.

As the saying goes, the duty of a doctor is to prolong life, not prolong the act of dying.
posted by xdvesper at 2:28 AM on December 5, 2011

My father, who I barely knew and hadn't seen for over 25 years, died of prostate cancer in 2004 at age 71. He was diagnosed in 1997 but didn't begin treatment for years, and didn't agree to have his prostate removed (despite his doctor's urging) until it was obviously too late. Oh, and he was an orthopedic surgeon.
posted by Devils Slide at 2:32 AM on December 5, 2011 [2 favorites]

BTW, he had a much younger wife (his third marriage), so I wonder if he delayed treatment (particularly having his prostate removed) due to concerns about the sexual dysfunctions which invariably follow that procedure.
posted by Devils Slide at 2:41 AM on December 5, 2011 [1 favorite]

You know, it's not just doctors but nurses too. I remember when I worked on a general medical ward (which is where the majority of sick nursing home patients wind up) and we'd all have quite serious discussions about what methods we would use to kill ourselves before we became like our patients.

Similarly, I've looked after plenty of cancer patients, both palliative and not, and consider them my favourite kind of patient (honestly, there's no-one nicer than someone with a death sentence) but with that kind of exposure I don't think I'd opt for any treatment were I diagnosed with any but the most treatable cancers.
posted by Silentgoldfish at 2:56 AM on December 5, 2011 [8 favorites]

My mom is a hospice RN and has been doing this for 20+ years after beginning in AIDS and cancer care -- and also devoutly religious. She won't even go for an annual physical and as her health care proxy, my instructions are "do nothing and keep me out of the hospital at all costs."

Knowing death intimately can change you.

Her advice, by the way, is to eat more fat. She insists the way you want to go is massive heart attack, or as she puts it "4 minutes of writhing on the kitchen floor and it's done."
posted by spitbull at 3:00 AM on December 5, 2011 [49 favorites]

I've wondered about musical thanatology; the idea that if you're dying, there should be an appropriate music to go with that. It doesn't seem so wrong to me. At the end of your life you could be surrounded by people making noises that grate and go against where you are, or you could be surrounded by themes that guide and comfort you.

Death isn't such a bad thing. It happens to even the nicest people.
posted by twoleftfeet at 3:09 AM on December 5, 2011 [9 favorites]

Not prolonging miserable quality of life is quite sensible, and in fact we apply these common sense judgments to our nearest and dearest, be it witholding treatment in favor of a dignified death, or electing a less painful but swift death when quality of life is impossible and costly.

Well, at least we apply these judgments to our pets. The quest for extending life at all costs is arguably counterproductive but certainly expensive. And in all likelihood that cost could be better used on improving the quality of life of neonates, infants, children, young adults etc.
posted by MuffinMan at 3:34 AM on December 5, 2011 [4 favorites]

I actually registered as an organ donor after reading this article. Something about people not putting their house in order got to me. Wonder what else one can do?
posted by Foci for Analysis at 3:40 AM on December 5, 2011 [4 favorites]

Having nearly all of my family (except me) involved in the health-care industry in Canada, I'm always struck by this. Through pathology (e.g., cancer biopsies and autopsies), oncological psychiatry (mental health for those suffering from cancer), and urology, death is a constant presence in their workplace. And what has always struck me from as early as I can remember was my parents and siblings telling me in no uncertain terms: no heroic measures for me; if I'm terminal, give me morphine and let me go. They're especially wary of CPR, heart defibrillators, and anything that resembles chemotherapy.

But at the same time, they always have stories of tensions between them and the oncologists at their hospital, who mostly seem to have adopted a sort of party line: chemotherapy is the best and first-choice way to treat cancer, and the possibility of its success—however vanishingly small—justifies any risks and suffering occasioned to the patient. Anybody who questions the viability of chemotherapy treatments or suggests that it inflicts more suffering that it cures is a Heretic-CrazyPants-BadGuy who is violating his/her Hippocratic oath and inviting lawsuits. There's even a gallows-humour joke that goes around the hospitals where my relatives work: "Why do they use nails to shut the coffins of cancer patients?" "To keep the oncologists from starting another round of chemo on the corpse." It's the kind of joke that my folks respond to with a dark grin of recognition, rather than hilarity.

All of this is to say that doctors' true feelings about end-of-life treatment often comes out in what they would wish for themselves, but such discussions in the context of patient care are more often decided by the looming threat of lawsuits, fractional guilt, desperate hope/denial, and professional taboos.
posted by LMGM at 3:41 AM on December 5, 2011 [49 favorites]

Does anyone know the research he's using to back up his claims about the amount of end-of-life treatment that doctors receive relative to non-doctors? He's stating a lot of interesting facts and I'd like to be able to track them down.
posted by The Ted at 4:35 AM on December 5, 2011

Since this story is based on anecdotes, here's another one: Palliative Care Doctor Fought for Life. "The next day, as the doctors began to understand the extent of her underlying cancer, 'they asked me if I wanted palliative care to come and see me.' She angrily refused. She had been telling other people to let go. But faced with that thought herself, at the age of 40, she wanted to fight on."
posted by Ralston McTodd at 4:35 AM on December 5, 2011 [4 favorites]

Metafilter: 4 minutes of writhing on the kitchen floor and it's done.
posted by Renoroc at 4:44 AM on December 5, 2011 [6 favorites]

On the other hand, there was an article in the NY Review a few years ago that argued that doctors are more likely to try experimental treatments for themselves--that they believed in doing something, rather than nothing, because that's the attitude their training had given them.
posted by Obscure Reference at 5:09 AM on December 5, 2011

Fill out a living will/advanced directive NOW so your decisions will be your own, not the medical establishments/panicked or well-meaning relative.
posted by lalochezia at 5:16 AM on December 5, 2011 [2 favorites]

A friend, who was a top doctor at her hospital, misdiagnosed her own cancer for months. As it got worse, her loved ones forced her to see a doctor. She explained her diagnosis to him, and he bought it. Careful, nuanced presentation of evidence does wonders for a story.

She lived less than a month after a real diagnostic exam was finally performed.

There's no substitute for objective, professional evaluation. Med professionals, please have checkups, like everybody else.
posted by IAmBroom at 5:31 AM on December 5, 2011 [7 favorites]

Here's a good link on the need for an advanced directive and some language that you could use: A Plan for the End

The writer is a doctor, if that matters.
posted by tuesdayschild at 5:52 AM on December 5, 2011 [5 favorites]

Since this story is based on anecdotes, here's another one: Palliative Care Doctor Fought for Life.

Yeah, you see plenty of patients who do get more life. How much and how much it's worth to you are the hard bits. At 40 I'd take almost anything. I've known a number of youngish MDs who sought out aggressive therapy.

I’ve had hundreds of people brought to me in the emergency room after getting CPR. Exactly one, a healthy man who’d had no heart troubles (for those who want specifics, he had a “tension pneumothorax”), walked out of the hospital.

That is strange, and I think has to do with his patient population. Survival to discharge from CPR is about 15% nation-wide. Again, I'd take it.
posted by a robot made out of meat at 5:56 AM on December 5, 2011

It always seems to me that there are a million different doors into this discussion, and when its reported on, qualitatively or quantitatively, nothing seems to fit exactly right. There are specialties in health care that have their very own specialty of ethics, NICU, for example. There are as many different ways to sign a DNR as there are the RNs and providers that provide the informed consent for them, as there are patients and families who hear that provider's personal interpretation, in the moment, of that spiel. It's Choose Your Own Adventure on some ridiculous scale, or maybe the scale is just smaller than we think it is. Maybe it's all the same for everyone it just depends on if the story starts 6 months before the end or a few minutes.

I don't even talk to non healthcare people about my real experiences with end of life because I work in pediatrics and I've never found that out of the context of some stolen minute to weep in the quiet of the med room or to laugh darkly in the break room it even translates.

I feel like my last many comments on mefi have harped about health literacy, and it's tempting to go there now, because, yeah, informed consent on DNR famously sucks and most of us don't have working knowledge of what lifesaving procedures are really like and what it would be like to watch our loved ones undergo them. But I don't know, it's kind of a fuck-all argument to bring into it--the thing is, even though I absolutely have said, with real feeling, that if I can't walk down the hospital hallway under my own power I want that morphine bolus, I also think about what I have seen in the faces of family members at the bedside. I think about seeing that in my kid's face, or my partner's. I think about how many patients have consented to what they see in those faces, too, even when they are ready to go. Just like in life, we are willing to suffer so that the people we love suffer a little less. Kids, too. Kids, maybe, especially. Jesus.

There are a few things that get said, that I don't believe in. When I listen to a surgeon tell a patient facing some radical procedure not to worry because 'a human can get used to anything' I know that's not true. In healthcare, we visit horrors on people with our bare hands, even when it's the right thing to do. The best of us work in research as long as we possibly can stand it so that we can stop the worst of it. RNs are notable for their contributions to healthcare delivery systems, for example, always figuring out how to make something like a catheterization more tolerable--fighting the physician or nurse practitioner to change their orders to something we know is easier to bear. Even in the simple pediatrician's visit--researchers developed those combination vaccine shots not because they're faceless science-mongers trying to fill babies up with as many chemicals as possible all at once, but because they are people who once had to hold down a screaming baby getting six needle pokes at thought 'good CHRIST there has to be a better way.'

But the more I'm in this, the less I know. Even that's a dumb thing to say. I get how we don't make or keep our own healthcare appointments. I get our refusals of care. I understand why so many of us don't have wills or end of life arrangements or have unchecked tumors or expired daily prescriptions. Who ever wants to fraternize with the enemy?

All of us have our own personal boogyman: some diagnosis, some procedure, some drug, that when we see it in a chart or have to order it, it's representative of a lot of what we've come to hate in our own profession. For me, it's a particular last-ditch sort of procedure. I don't have to be around it much, especially now that I am in primary pediatric care. Recently, I found out the kid in sitting on the table in front of me had undergone this procedure, when he was a baby. He was in front of me for a cold. His mom mentioned it when I was taking history because I doubt she'll ever be able NOT to mention it. It will take her whole life to exorcise it, I imagine. Well, I hugged this kid, and he was old enough to think that was pretty weird. But his mom totally got it. She just said "yeah, I look 32, but inside I'm 80. That's how much it aged me."

At least, with my comment, if you can get through it, understand that there isn't any way any of us, when it comes to this transition only the actively dying can comprehend, know what we are really talking about, let alone what to say about it. Bond with your provider over the great mysterious ignorance of it all and do your best. Some of us cope by planning, some of us use denial, most of us change our minds. All any of us can do is keep asking each other what it is we need in the moment. Hold hands. Go easy on each other. The little dumb stuff that doesn't make sense until you're there.
posted by rumposinc at 6:01 AM on December 5, 2011 [137 favorites]

Metafilter: 4 minutes of writhing on the kitchen floor and it's done.

Reminds me of my first time.
posted by midmarch snowman at 6:07 AM on December 5, 2011 [9 favorites]

Metafilter: 4 minutes of writhing on the kitchen floor and it's done.

Or more likely, a first heart attack or stroke that leaves you seriously disabled.
posted by atrazine at 6:11 AM on December 5, 2011 [5 favorites]

Foci for Analysis: it terms of what else you can do--you can be a bone marrow donor. You can do everything from the website, and then they send you your swabs via mail. It's easy--incredibly easy. Bone marrow transplant has more and more applications for a large variety of patients and it's minimally invasive for the donor (versus solid organ donation, for sure, and most donor-patients feel like it's just a few clicks up from blood donation as far as the procedure).
posted by rumposinc at 6:45 AM on December 5, 2011 [4 favorites]

tuesdayschild's "A Plan for the End" link is fantastic. Got me teared up and thinking I better call my brother tonight. The final sentence:

There is so much more to an Advance Directive than "full code" versus "Do Not Resuscitate." Please investigate the subtleties for yourself.

And thanks, rumposinc, for that amazing comment.
posted by mediareport at 7:00 AM on December 5, 2011 [2 favorites]

Horribly cynical, but perhaps doctors know when everything possible has been tried. Many Americans are suspicious that there some treatment that is being withheld due to cost.
posted by benito.strauss at 7:02 AM on December 5, 2011 [1 favorite]

I wonder how many doctors follow their own standard advice to watch your diet and get more exercise? I know in the general patient population it is about as likely as getting attacked by a saber toothed cat.
posted by Kid Charlemagne at 7:03 AM on December 5, 2011 [1 favorite]

It isn't just money. It's medical ethics too. How many doctors do you think would volunteer to be in Ariel Sharon's spot? What is going on with that?
posted by bukvich at 7:04 AM on December 5, 2011 [1 favorite]

The link is not loading for me, but do they break it out? How do oncologists choose to fight their own cancer, for example?

(My mother is an ER nurse and she is also one of the "DNR, don't let me die in a hospital!" people. I think part of it is "I don't want to die at work" and part of it is that they only see the really bad cases where it is too late for treatment, or when someone (hi dad) chickens out on their "can't wait for my massive heart attack" exit plan.)
posted by gjc at 7:38 AM on December 5, 2011 [1 favorite]

gjc: google has cached the article.
posted by madcaptenor at 7:48 AM on December 5, 2011

Survival to discharge from CPR is about 15% nation-wide. Again, I'd take it.

Couple of interesting notes to go along with that study, though. First, it's discussing in-hospital CPR, not talking about patients who come in the door as a working code. I suspect the survival rate for out-of-hospital CPR is much lower. (So under some circumstances it might make sense to have a DNR order in force most of the time, but then revoke it if you happen to end up in the hospital in a decent state.)

Second, there's still a fairly large risk of neurological or general-function decline, which might be enough for some people to prefer no-CPR; a 14% chance of neurological decline (especially when you're talking about a 1-point decline on a 5-point scale where 1 is OK and 5 is brain dead) isn't a joke. But that's just personal preference and risk assessment.

But perhaps more importantly is the note about starting scores; only 68% and 49% of CPR patients started off as "good" on the neurological and general performance scales, respectively -- so there's a pretty good chance that if you need CPR, you're not doing too hot in the first place. Avoiding CPR might be (and I would argue, certainly, obviously is) actually a way of getting around taboos on suicide rather than a fear of CPR itself -- the fear isn't that CPR isn't going to hurt you or make you that much worse-off per se, it's that CPR is going to keep you from dying in a situation when death would be preferable anyway.

Third, when you compare the study from the 1980s to the recent one, it's worth keeping in mind the very different environment in the hospital of the 1980s, and what a dischargable patient would have constituted then versus now. I'm not sure that "survival to discharge" in a modern hospital is nearly as meaningful as it was then. Lots of patients with extremely poor prognoses get discharged into hospice or care facilities from modern hospitals (for good and valid reasons).

Similarly, I suspect -- although I've no idea how you're measure it -- that people are frequently discharged from hospitals in conditions that might leave them preferring to never have woken up, but this is not an outcome that is generally considered unsuccessful. It is in order to reduce the chance of this outcome -- a fate literally worse than death -- that many people prefer to simply say "do not resuscitate" and be done with it.
posted by Kadin2048 at 7:49 AM on December 5, 2011 [11 favorites]

Google cache (scroll down). Server needs a doctor.
posted by qxntpqbbbqxl at 8:14 AM on December 5, 2011

Is this how webpages die?

I wonder whether it will be resuscitated.
posted by wayland at 8:18 AM on December 5, 2011 [1 favorite]

Counterpoint: My mom is a former nurse who wants EVERY. THING. done and don't we dare pull the tubes. Her perspective being "What if I *like* being a vegetable?"

(Great article - I'm no doctor, but I agree quite a bit with the approach to end of life care. For myself, I would absolutely prefer quality over quantity.)
posted by sonika at 8:21 AM on December 5, 2011 [4 favorites]

Blanket DNRs are a little dangerous, because there are certain cases where the odds of coming out of a resuscitation alive and healthy are substantially better than normal. The example I know about is lightning strikes - lightning is fairly likely to stop your heart but leave you otherwise mostly intact. Of course, with lightning, you mostly depend on your first responders (who won't know about your DNR and would probably ignore it anyway) but I'm sure there are other examples that occur during hospital care.
posted by Mitrovarr at 9:03 AM on December 5, 2011 [1 favorite]

rumposinc--thank you for that beautifully expressed comment.
posted by yoink at 9:45 AM on December 5, 2011 [4 favorites]

My grandmother passed away in June, at the age of 94, sharp as a tack and living in her own home. She'd been battling severe hypertension secondary to renal artery stenosis for about twenty years, and congestive heart failure as a result of the hypertension for about two years. In the last year of her life, she had eleven heart attacks. Recovery was pretty easy for all but two of them, but even the easy recoveries left her slightly less capable than she had been.

In January of this year, she had a MASSIVE episode that required intubation and a stay in the ICU, and my mother was given the options of either doing a very risky stenting procedure, pulling the plug, or letting her stay on life support until she died of an opportunistic infection. (I'm not sure if that's how it was officially put, but my parents both work in the health care field and my mother is educated and dispassionate enough to know what's what.) She elected, with great misgivings, to do the stent, almost in the hopes that she would die on the table. My grandmother survived the procedure and in fact did really well, she got a lot of function back and was able to start working as an academic consultant again.

But only for about five months. She had another heart attack in June, and investigation showed that the stents had failed. Her doctor kind of blew her off and sent her home with instructions to call 911 if it happened again. Of course, it DID happen again, about a week later, but (thank all the gods above and below) her niece, my mother's cousin, was there. She is a retired physician, and she was able to be very direct with my grandmother.

"They are not going to do another stent on a 94-year-old woman with congestive heart failure whose previous stents lasted five months," she said. "There is no procedure or pill that will reverse or even slow the course of your disease at this point. What will happen if you call 911 is that the paramedics will come, and they will give you oxygen, and if that doesn't work they will intubate you. They will transport you to the hospital, where you will be too unstable to discharge, and they will intubate you there if you aren't already tubed, because your heart is too weak to fight your pulmonary hypertension. Once you are intubated, you will never come off the ventilator, and you will remain in the intensive care unit until you die. That might not happen on this call, but it will happen eventually.

I am very happy to call the paramedics for you. They will probably save your life. Let me know what you want to do."

My grandmother said "Ah, hell, better just call all the friends and relations," and she brushed her hair and put on lipstick and got dressed, and all her local friends came by and chatted with her for about three or four hours. And then she said "Well I guess I'd better lie down now," and she did, and she got some oxygen and some Ativan and talked with her niece for about another hour, and then she slipped into unconsciousness and stopped breathing about ten minutes later.

It was so. . . it was so OK. Not OK, of course, I miss her terribly, but given that nobody gets out alive, it was really an OK way to go. But if she hadn't had a family member there who was a doctor, who was able to be that forthright with her, it would have been so, so awful. I wish everyone could have that kind of blunt counseling, but I don't know how to make that happen.
posted by KathrynT at 10:31 AM on December 5, 2011 [129 favorites]

Let me clarify: my mom doesn't even want an *ambulance* called if she is having a heart attack or stroke.

This is a woman who has seen well north of a thousand deaths up close and intimately in her career, from little babies to centenarians, from every possible cause, from AIDS to motorcycle accidents to childhood leukemia. She loses 2-3 a week on average as a hospice nurse. And of course, someone who believes completely that something better lies on the other side.

Of course she is as strong as an ox and works 60 hours a week at age 74. My theory is that she will outlast me by decades.
posted by spitbull at 11:56 AM on December 5, 2011 [1 favorite]

My father-in-law had congestive heart failure, and he was on hospice after many doctor and hospital visits. I was giving him morphine and Ativan, and whatever else the hospice nurses told me to.

One day, he was sitting in his easy chair, breathing hard, and I said, "anything I can get for you?"

"A bourbon would be nice," he answered.

So the next day, I had my husband pick up some bourbon nips and we sat and drank bourbon together. We also had mint juleps on Kentucky Derby day. We'd taken him to the garden store and got all the herbs, and I would have him smell them when I was cooking, and he told me that was his favorite time of day, to just sit around talking while I made supper.

Then we got totally burnt out. I'm sorry, but we did. It was 24/7. So his other son took over. One day, his dad called and asked for his wine. I sent my husband out and told his brother he was coming down there with the wine. "But the doctor said he shouldn't have too much!" was his answer. I was like, wtf, you took him off hospice? Like there is any harm in some old guy who is dying having a glass of wine at 5:00 at night?

Then he couldn't do it anymore and put him in the nursing home. This time, the doctor prescribed a glass of wine for him. I was sorry not to have seen it to the end, but god love it, I was worn out. And he really wanted his sons, not me.

My husband told him he'd be seeing his wife and parents in the the afterlife. "And the animals, too?" he asked. My husband told him yes, the animals too. Then he passed 2 days later, while his 90 year old cousin was on a plane from England to see him.

He had the Advanced Medical Directive and the DNR and all of that in place, but there was never any CPR or things like that. It was more like, "no cure, go home now, and get in touch with hospice and don't bother us again." I don't know if anyone here has ever taken care of someone 24/7, but even nurses get a day off. My husband took a week off of work, unpaid, and he was bonkers by the end of that week, which is why he had his brother take over. I feel that hospice is good, but it's also a way to keep dying people with chronic conditions from going to the ER and having hospitals stays. Medicare pays for it.

To wit: my mother was in good health, then started getting weak and thus, my dad called the dr and was advised to bring her to the hospital ASAP. She went in and it was discovered that she had a subdural hematoma. They decided to take her off the blood thinners and wait and see. Then she had seizures, while my dad was visiting her, and they transported her to a hospital with a neurological unit.

They operated, and removed the hematoma and she seemed to be recovering nicely. Then she had a massive stroke a couple of days later. No bones about it, the right half of her brain was gone.

I flew out at my dad's wishes, and we all gathered there to make some decisions. No more life support. She did not have a living will, but we all understood that it was not good. Then came the waiting, and the wondering, did I do the right thing?

Then one day, we were told the hospice people should be involved. Not because she was alert and needed end of life care, but because of insurance issues. Medicare only pays so many days in the hospital, and we could have her moved (which the dr said would not be advisable) or go on hospice. It was a 100 mile trip each way, and my dad, who had a heart valve replacement 2 years ago and has diabetes, just couldn't make the trip every day to visit her.

Yet those hospice people made it seem like we should be visiting her every day and sleeping by her bedside. When they asked if there was anything we needed, I requested that they call us by noon with updates so we weren't hanging on edge. The next day, no one had called, and both my dad and I were on edge. I finally called at 2:00, only to get a call back from the hospice nurse, who said, "oh, I guess I missed my noon deadline, didn't I? Your mother's skin is warm and dry... blah blah."

So I don't have a lot of happy feelings about how great hospice workers are. I have the distinct feeling that it's a business designed to keep Medicare going when people run out of their regular Medicare insurance (stay out of our hospitals, you dying people! If not, let hospice take over because we don't want the paperwork!). In both cases, my FIL and my mother, we had supplemental long care insurance.

Then the hospice nurses had the balls to call both me and my dad on two separate occasions and tell us that they had gotten a response from her when asking if she was in pain. Bull-fucking-shit. She was brain dead. So how could they have asked her if she was in pain and gotten a response? I said, "Oh, then you're going to put her back on the IV and feeding tube now" Humanah-humanah, "uh, if anything changes for the positive, we'll let you know."

That's what I thought. She was brain dead and they were telling my poor father that she was mouthing the word no when they asked if she was in pain. The next day, they told me that she was nodding, so they gave her more pain medication. I say it was to get her done with so Medicare wouldn't have to pay any more for her hospital stay. After the doctor threatened to move her back home unless we opted for hospice, as was their policy. All of this served to make the whole dying process MORE stressful, not the love and light and "comfort care" that the hospice people promise. Fuck you, hospice people. You have fucked me over twice this year, and I will just take morphine and inject it into myself rather than have you come into my home and belabor my family if I am dying.
posted by Marie Mon Dieu at 12:28 PM on December 5, 2011 [3 favorites]

My dad was a doctor. He never went to a doctor, as far as I know. Well, until it became obvious that something was seriously wrong. He died of brain cancer six months later. He was 70.

My mom, though, given six months to live, at age 60, diagnosed with ovarian cancer, did everything to prolong her life. Best oncologists in the country, etc. She stretched it out two years, and died the morning after seeing her first daughter's baby. All that chemotherapy, the colostomy bag she had to use because of a little slip of the scalpel...all that was worth all those extra moments for her.
posted by kozad at 12:48 PM on December 5, 2011 [1 favorite]

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posted by clarknova at 1:15 PM on December 5, 2011

You can't cure death. So stop pretending that you can. That's all I was saying.
posted by Marie Mon Dieu at 2:38 PM on December 5, 2011 [1 favorite]

So I've read the above comments, and have a few things to say.
First, I've been fortunate to work at a hospital where the palliative care team is top-notch. That team maintains very open and frequent contact with our group, and we keep in touch with other groups, and everyone kinda gets together and keeps everyone else well-informed.

The hospital, as I may have joked about before, can most kindly be described as serving a population with a very poor tax base. Fortunately, the physicians and nursing that who work there, like myself, choose to work there, because hey, it's reward, we all kinda know everyone, and we feel good doing some good. Any one of us could just work at another nearby hospital, but the ties between ourselves and to the community are strong.

When you've got a good group of people together, we all talk about particular patients, and we all end up on the same page. We know what the current thinking of the patient and/or family is, and what their wishes are. Most importantly, we're all in agreement that our job is not to steer end-of-life issues toward one direction or another. We're here to educate, and by educate I mean hunker down and talk to the patient and family in words they can understand.

Which isn't to say dumb things down. Use medical terminology, and explain things in more common speech. Draw pictures and diagrams. Use hand gestures.

At other places, I've seen this strange pressure where physicians and staff try to define a "right" course of action and apply slight pressure towards DNR/comfort care/hospice/etc. This is not right. Our job is to educate all involved so they can make an informed decision.

I think this stems from a lot of things: MDs trying to get through rounds faster, or see more patients (read: some programs offer productivity bonuses, which might mean keeping a patient in the hospital longer than they have to, and is a fucked up model for staffing-- our group outright rejected this form of pay). MDs having control. MDs wanting control.

And this might be one of the reasons why we, as the medical lot, have a difficult time with end-of-life issues of our own, or for our family. Because in order to do so, you've got to give up the control, and power, and confidence, and ego, that you've been accustomed to. You've got to defer everything to everyone else. You've got to have some semblance of humility to recognize that you're probably not the best person to take care of yourself.

But we're an arrogant lot, for the most part.

Me? Having seen all this stuff over and over, and on a near-daily basis? Having seen my pop really ill and intubated, and in the ICU multiple times? I do what they say. Period. And if someone wants some goddamn fried chicken when they're on hospice, and know that they've got heart failure and this might cause problems, fuck it: I'll go down and hoark some chicken from the cafeteria or the MD lounge for them myself. There is no question of what their decision is. They made an informed decision, and that informed decision in this case was for fried chicken.

My pop? The only things he wants materially, if the situation were dire, would be a couple of cold plums, which he's allergic to (I got my Oral Allergy Syndrome from him, I suppose), which he had not enjoyed since his childhood, and a smoke.

The bottom line is that we're in a position to serve, and to educate. And education should not be happening merely in an acute setting. Everyone could be doing a better job talking about these issues, and these discussions could be happening when everyone's nice and healthy, or as healthy as they can be if they've got some medical problems. Ideally, nothing should be a surprise when it comes to end-of-life care.

It all seems to come down to the golden rule: don't be a dick. Folks in the medical profession: don't think that you know a patient better than themselves or their family. Don't press them to make a decision either way: they'll make their own decision, and it will be an informed one if you do your job right. Respect it.

Don't be a dick and rush these conversations. Tell stories. Empathize. They're patients to you, but family or friends to everyone else. There's always caring, and there's loving. And if you can't genuinely do either for another goddamn human being, you need to get out of the medical field.
posted by herrdoktor at 2:58 PM on December 5, 2011 [18 favorites]

The article is back up, looks like. For those who only got to read the google-cached version, I recommend checking it out. The comments are really great.

My father has made it crystal clear to my mother that, should the worst befall her, he will value and treasure whatever agonized and abject scrap of life remains within her, and he will take absolutely every heroic measure available to keep her alive.

My mother does not want that. She has made me promise to fight him if it comes down to it, and I will. (I'm the only child, so this will be my battle, and only my battle-- though I have great friends and a great spouse who will be there to support me, when and if the time comes.)

Maybe next we get together, Mom and I ought to go out and get matching "DNR" tattoos.
posted by palmcorder_yajna at 3:13 PM on December 5, 2011 [4 favorites]

I will always remember that nurse telling me, "oh sorry, I guess I missed my noon deadline." I know nurses have to do their rounds, and I know hospice nurses have to visit people on their schedule and then do their paperwork on the computer. Because I saw that when my father-in-law was sitting here, gracefully dying, while the nurses came.

But for that woman to say that to me while my mother lay dying. I will always remember that and I will always think of hospice people as assholes from now on. They asked me what could they do and that was all I could think of, to call us before noon. So thank you, hospice bitch. You really helped me through my mother's death, you and your lying cohorts who lied about her being responsive when she was brain dead. Thanks. Thanks so much. I spit upon you all.
posted by Marie Mon Dieu at 3:39 PM on December 5, 2011

Marie, you have my sympathy.
posted by benito.strauss at 4:19 PM on December 5, 2011 [1 favorite]

Marie, that's horrific. I'm so sorry.
posted by KathrynT at 5:19 PM on December 5, 2011

Marie, my heart is with you.
posted by seawallrunner at 6:30 PM on December 5, 2011

understand that there isn't any way any of us, when it comes to this transition only the actively dying can comprehend, know what we are really talking about, let alone what to say about it. Bond with your provider over the great mysterious ignorance of it all and do your best. Some of us cope by planning, some of us use denial, most of us change our minds. All any of us can do is keep asking each other what it is we need in the moment. Hold hands. Go easy on each other. The little dumb stuff that doesn't make sense until you're there.

thanks, rumposinc. well said, with wisdom and heart.
posted by erzulieloo at 6:54 PM on December 5, 2011

I don't think they were bad people. I know they had a job to do. That comment just struck me as wrong at that point in time. I got the call when my mom died, they were there -- they were moving her and she was breathing funny so they stayed there with her and then she died. And I took the call, which I didn't want to do, and then I looked at my dad and he slumped and the light went out of him. 56 years being married to her. He had purchased a ring and put it on a dalmatian doggie from the county fair, and put it on his collar. He gave the dog to her, knowing she would see the diamond, because he was too shy to propose. He was still paying $5 a month for that wedding set when my oldest brother was born.

Now he can't find her wedding set, the ring and the wedding band. He knew she wouldn't have worn it into the hospital, but he never thought to ask her where she put her rings. I know its somewhere on her dresser.

He just said, "now I guess we should make some calls." And he got right down to it. Then he started picking things up and he's still at it, my sister is going up there to help him go through clothes and things, but getting back to the point:

My brother died in 1988. He was brain dead and we all agreed to take him off life support. My mother was brain dead and we all did the same (which is why my dad had me fly out there, family decision). My father-in-law made it very clear, via words and legal documents, that he did not want to be kept alive via any heroic measures. He just wanted to have a mint julep on Kentucky Derby Day, a wine before dinner, and a bourbon when he was feeling shitty. And I gave it to him. The the morphine and no looking back.

I raise my glass to you all and I raise it to anyone who is going through the dying process, front or rear end. It sucks and we all will do it, but I will have a mint julep and a bourbon in my last days, and maybe a martini or two, with extra olives (stuffed with bleu cheese).
posted by Marie Mon Dieu at 7:53 PM on December 5, 2011 [7 favorites]

KathrynT, I wish we'd had a doctor relative the way you did. My dad got intubated and put on a respirator, and they told us for most of 18 months that he could get "rehabilitated" off of it. Hah. Yeah, right. The funny thing is that my dad supposedly HAD a living will...but my mom was the one with a voice and she wanted to string him along as long as possible. It kind of came out like palmcorder_yajna's situation, except it was my mom wanting him to stay alive, the rest of us wanting to let him die, but she was the only one with the power to decide it and fuck the living will. She only finally caved in when the "rehab" hospital gave him the boot and suddenly she'd have to pay $24k a month to keep him alive in the nursing home they were going to transfer him to. Even she knew Dad wouldn't be ok with wasting that much money.

The fun thing is I'm single and she's my closest relative, so even if I have a living will (and I have certainly told her verbally how I feel about this shit), she'll disregard it, and I'm not close enough with any other relatives to give PoA to them, and friendships change so who knows if that's a good idea or not. So let's hope she goes before I do because if that's not the case, my death will be long and ugly.

There definitely needs to be more education about living wills and what the results of these medical procedures are. But I'm not sure how much logic will get in there with some people.
posted by jenfullmoon at 9:11 PM on December 5, 2011

The fun thing is I'm single and she's my closest relative, so even if I have a living will (and I have certainly told her verbally how I feel about this shit), she'll disregard it, and I'm not close enough with any other relatives to give PoA to them, and friendships change so who knows if that's a good idea or not.

If you're interested in this as an applied problem, I've heard it suggested that the best mpoa just for end of life is someone you aren't terribly close to and feels the same way. I know an MD whose mpoa is his lawyer rather than his wife. It is vastly more useful than just an advanced directive, but requires that you lay down for that person what you want, preferably in writting so they'll remember.
posted by a robot made out of meat at 6:08 AM on December 6, 2011 [2 favorites]

she'll disregard it, and I'm not close enough with any other relatives to give PoA to them

You can give your Power of Attorney to an actual attorney, if you want, or someone else outside your family. I know of some people who in their advance planning have retained a lawyer with the express purpose of carrying out their medical wishes, acting as the executor of their estate, and doing all the crappy death-related paperwork (last tax filings, etc.) that have to occur and would otherwise fall to family.

That's always struck me as a fairly good solution; I assume it's not cheap, but the expense seems likely to be justified when you consider the turmoil spared your family and the otherwise-risk of having your life's savings expended on a last few months in a nursing home.

But part of the benefit of doing things that way may just be that the attorney would probably insist on having your wishes documented more thoroughly than I think most people do when they plan on having a family member act as their surrogate.
posted by Kadin2048 at 6:34 AM on December 6, 2011 [1 favorite]

There's even a gallows-humour joke that goes around the hospitals where my relatives work: "Why do they use nails to shut the coffins of cancer patients?" "To keep the oncologists from starting another round of chemo on the corpse."

Terribly late to this thread, but I hope this offhand comment in no way causes a reader who may be facing chemo to believe oncologists are just randomly inflicting it on people. It's been a critical -- and incredibly successful -- component of my treatment for breast cancer. Twice.
posted by thinkpiece at 2:49 PM on December 11, 2011 [2 favorites]

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